ABA, Regrets, and a Question of Happiness.

ABA – Applied Behaviour Analysis – is a polarizing therapy in the autism community: For some it is the holy grail of treatment, for others it is an abusive practice. When we began an ABA playgroup with our autistic son when he was three, I was largely unaware of the controversy or details; I just saw the opportunity to meet other autism parents and to learn more about my son in a therapy-based setting. Even so, there were some elements of the therapy that disturbed me.

For example, their insistence that my son not be allowed to just line up and play with vehicles in the break. My thinking was they were already asking so much of him during the learning sessions, why couldn’t he be allowed to do what he wanted with vehicles on the down time, just because it was typical autistic behaviour? The vehicles were there and visible, it seemed like a cruel tease to me that he was barred from this self-soothing and simple activity. By barring his access to play in this manner, the breaks for him would end up with tears or even meltdowns. To put that in proper perspective though, you’ve got to know that lining up vehicles was my son’s primary – and often only – form of play each day at home. He was deeply obsessive and controlling about it.

Another example, and the one this post is primarily about: My son’s happy dance. When my son is happy, he hums, flaps his hands, and bounces up and down, or runs back and forth across a room (he’ll do the running instead of the bouncing if he’s really feeling the joy). At the ABA play group, they would stop my son expressing his joy in this way, by either tapping him on the shoulder or holding the sides of his arms, or signalling that he must be quiet. The touches didn’t simply stop the happy dance though, they inevitably upset him since he really didn’t like being touched like that (he’s more receptive to deep pressure for what that’s worth). So he’d go from very happy, to quite miserable. This struck me as rather cruel and even un-necessary; wasn’t his happy dance just his own and innocent way of expressing his joy, why were they so determined to stop it..? Needless to say, we did not enforce that stopping-the-joy approach in the home environment, and I did wonder whether the approach would have ever been successful anyway, since this happy dance seemed so deeply embedded in his behaviour.

And so it was that the happy dance continued. And continues to this day. And now I deal with the unforeseen consequences of what I thought was my open-minded acceptance of his difference. Now I have regrets.

My son’s happy dance is the one strong behaviour that makes people stare at him in public, and steer clear of him in public too. If that was all it was – the staring and the steering – I could still convince myself that I was right. But there’s more. The hum part of the happy dance dominates a room. Making it hard to have a conversation with anyone else or listen to the radio or just relax. The running back and forth becomes a hazard in a smallish house of four people. The constant bouncing up and down is ruining the furniture, as my son has become a larger child (the poor couch squeaks under him and is sagging in his favourite spots). But there’s more…

My younger son, my two year-old, has picked up the happy dance as his own. He now also hums and runs back and forth when he’s happy. He used to just do it when his brother was around, which I thought was sweet – like he was in-tune with his brother’s joy and expression of joy. But now he’s adopted it as a behaviour as his own. And when other people stare I can’t say or think “don’t stare you judgmental ignoramus, he has autism,” because he doesn’t have autism. It’s just a remarkably annoying and unusual behaviour, solely picked up from another child. When both boys are humming and running in the house at the same time, it’s pretty much impossible to safely cross the lounge or hear yourself think. This is a multiple daily occurence now.

A seemingly harmless and special difference, has become a problem. And I can’t help thinking that if I’d just listened to those ABA therapists, and followed through more, we wouldn’t be in this mess. If I didn’t like the methods they were using to stop the happy dance, I should have discussed that openly with them – suggested an alternative perhaps – instead of silently adding it to my internal list of concerns about whether this was the right thing for my son. I should have openly shared my concerns with the therapists, instead of presuming that this was just how ABA was done and had to be done, I should have recognised what I had plenty of evidence for right in front of me: That ABA is personalised and receptive to the child. I know why I didn’t confront them properly; I didn’t want to seem ungrateful and so much of what they had done with him was actually working. (My son had gone from a screaming, fearful, angry child, to one who tried to take part and ended up very much enjoying his sessions with the playground. And I learnt a lot too through that group, about autism and about my own son.)

I think it’s so important that we encourage parents to voice any concerns, instead of feeling like the ignorant lesser party in therapies, because if the parents don’t full understand and support a therapy, it is that much less likely to be successful in the long-term.

You may wonder what happens now when I attempt to stop my son’s happy dance. He doesn’t cry, or have a meltdown or stop being happy. What he does, because he is a typically contrary and annoying six year-old right now, is hum louder and flap harder while staring straight at me and laughing, because he thinks it’s funny to do the exact opposite of what he’s told. He does that a lot. It’s a real problem with him lately. I’m working on it!

He still naturally happy dances every day, many times a day, and I hardly ever crack down on it if his brother isn’t around and if it’s not interrupting conversations or whatever. I still think it’s important to let him have that outlet in his own way. But I’m cracking down more now in public and around his brother, so he learns what all children must learn: Not all behaviours are always appropriate, even happy behaviours have their place. That’s life, and that’s fine, it’s what’s required in a world where we share space and time with other people.

I’ve noticed a small reduction in the happy dancing (without, I must emphasize, any reduction in actual happiness), which is great. At least it’s not getting worse or staying the same, so I’ll take the small victory for now. I’m sure I’d have more success if I tried to stamp it out completely, but as I said, I still have concerns about whether that is best by and for him. I have had no success yet in reducing the behaviour in my youngest, who loves his older brother and treats him like a role model. As my youngest gets more words and stops seeing his older brother doing it so much, it should be easier to reduce the behaviour. I very much want it gone before he starts kindergarten, I don’t want him being isolated and marked out as a target by his peers because of this. This is not part of “who he is,” this is a solely learnt behaviour from another child who has a very real neurological difference which explains that origins of the behaviour for that other child.

I do wonder if perhaps there was a “sweet point” for altering this behaviour in my autistic son: A point at which stopping the happy dance wouldn’t have been so upsetting as it was when he was three, and before it became so much more deeply entrenched as it most likely has become over the years. If there was, I think we missed it. But I firmly believe it’s never too late to take action to make our children’s lives better, which my son’s – in my opinion – would be, if I can get him to stop happy dancing all the time.

I know this post will annoy and maybe upset some people, particularly those who were so supportive a while back of my open-minded acceptance and encouragement of this aspect of my son’s difference. But I felt I needed to write this post anyway. I need to share my doubts and regrets and even continuing confusion about all of this; it is part of my journey with my son and his autism, and part of my journey as a parent. These are the judgment calls we have to make sometimes, over what may seem trivial to some (“a happy dance, so what!”), but impacts on our family life every single day many times over. I don’t pretend to have the answers, I screw up along the way, but I never stop searching for how to do the best by my son, for who he is as an individual that must find his way through this world.

So if you, on the contrary, do have the answers for me – if you can set my mind at ease, or feel you must dissuade me from this path I’m on, or encourage me to be even harder on him than I am, or do it in a different way – then I invite you to share those answers and explain to me where those answers come from.

In the meantime I shall take comfort from the fact that my home is filled by annoyingly happy children. That, at least, seems like an important success.

***

Some of the other posts I have done about ABA and my son’s happy dance:

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117 Responses to ABA, Regrets, and a Question of Happiness.

  1. Jim Reeve says:

    I’ve never researched ABA therapy before, but after reading your post, I don’t think it’s right for my son. I would never put him in something that stifled his happiness or creativity. I’m sure it’s effective for some, but it doesn’t sound right for me.

    And if you get a bad feeling from the therapy, then I say trust your motherly instinct. If you get a bad vibe from it, then dont do it any more.

    • We stopped it a while ago, but only because he started school. It was perhaps the most useful and insightful therapy for our son at the time. I would strongly recommend ABA to other parents of young autistic kids, you’ve just got to make sure you choose a trusted and well trained provider, which is true of any therapy. I’m sorry I put you off it, it really is a great thing in my experience and opinion. I just wish I’d talked more with the therapy team, and better understood the consequences of behavioural issues.

  2. Nostromoswife says:

    We’ve been doing ABA for 2 years now and I really relate to how you felt at the beginning. Starting ABA was horribly stressful and we constantly wondered if we were doing the right thing. However 2 years on and we’re relieved that we’re still going. It’s really hard to decide what’s important and what will be important 2 – 3 years down the track. After all, with autism you really don’t know how it’s going to pan out – so I wouldnt’ be so hard on yourself.

    Our son has turned out to be on the lower end of the spectrum, non-verbal etc. ABA has been the only way to teach him anything – most importantly how to communicate with PECS. I highly recommend ABA but it’s a huge undertaking for a family and you have to be happy with it and the people delivering it.

    • Excellent comment Nostromoswife, and I think you make a really good point about ABA being very stressful and hard at the outset: I had my doubts and concerns about whether my son would improve using their methods and whether he’d stop being so angry and fearful at their sessions, but I’m so very glad we stuck at it.

      I really appreciate you sharing your own experiences with it, thank you 🙂

  3. mrsstone says:

    This is such a great post. Because the thrust is about parents being part of the ABA team. And the need for open communication when things don’t sit right, if only in order to better understand the long term goal for approaching certain behaviours. I have never stopped my son flapping as like yours it’s something he does when happy. It is now reducing of it’s own accord. But I have had discussions with our service provider about certain aspects that I felt uncomfortable with, and have made it clear I am not trying to ‘normalise my son. Rather give him the tools to succeed to the best of his ability. As you know I am a big fan of ABA when it is done with joy and respect for all involved. Not all ABA providers approach their role in this way, but most that I encounter do. My favourite ABA saying is “bring the party”, which means make learning fun. With lots of positive reinforcement and praise to acknowledge how hard our wonderful kids work.

  4. þorgerður says:

    One important component of ABA is teacing a replacement behavior…there are many ways of showing joy 🙂
    My son has a habit of pacing, he needs a lot of movement. The thing is he paces when he does not know what to do , he has trouble sequencing his actions so I pull him out of it and we do movement games I teach him games that require movement.
    He is soon 7 years old and we still do ABA it has given him language and he can play now and engage in creative things as drawing and writing and music…
    sadly though it is only at home as therapists are few and far between.

    • On the replacement behaviour point, I’ve thought about that in the past and tried to replace the dancing, for example with words “are you feeling happy?” But it doesn’t seem to have worked, and I’m struggling to even come up with an adequate replacement. I’ll have to give it further thought, and maybe discuss it with his current therapy team from school when we next meet (we only meet twice a year unless there’s some sort of emergency).

    • I definitely agree with your point about replacement. You can’t expect to completely eliminate a behavior without introducing a substitute.

  5. nostromo says:

    My son sometimes does something when he’s excited that I call the Jiggly-Man dance, because he looks like a jiggly string puppet doing it!
    To my mind stims should be dealt with if they meet a criteria; if they significantly impair acceptance in social situations, cause problems for others, or if they impact upon learning or attention e.g. if the childs stim causes them to not be able to focus or attend to something. Otherwise its not too much of an issue.

    Perhaps we need to re-name your sons dance, because suppressing a “Happy Dance” sounds a bit oppressive.
    Putting a halt to a “Goober dance” doesn’t sound so bad does it? 🙂

    • Excellent point about the choice of name! Also nice summary of when stims should be addressed and why, I agree with that, and it does reinforce for me the need to address this particular behaviour. Thanks for your comment.

  6. wishihadakg says:

    My son does a similar “dance” but we call it his “YaiYai’s” as in “Gosh you really do have the yaiyai’s today”! I’m never quite sure how happy this dance actually is though. It looks joyful but as little man with huge anxieties and sensitivities, Jude has recently told me that “the world is always moving up and down except when he’s on a boat, in a car or doing his YaiYai’s.
    I hate what I’ve seen of ABA. I also understand that we all have to do things in our own ways – there is no right or wrong way. I’m not going to judge what works for others. I get what you’re saying. What is cute at 3 is not so cute at 7. We now say that the YaiYai’s are for home but only for home. He still gets his stim but with my boundaries.

  7. M.J. says:

    For what it is worth, I think you are doing the right thing. You have to give your children the ability to control their own behaviors and the ability to understand when a behavior is or isn’t appropriate. That is the job of every single parent, not just parents of children on the spectrum. This process is obviously harder in children with autism who often do not “get” the social side of their actions.

    And honestly, I have never heard an argument making that case that ABA is abusive that actually held water. I understand that some people feel that way but I have never heard a rational reason for that sentiment that didn’t boil down to basically “I want to act however I want and it is up to rest of the world to change”. And while i am all for acceptance of differences and making reasonable accommodations, acceptance should not be used as a universal excuse for anything that someone wants to do.

    ABA isn’t always going to work for every child and there are certainly times when it is taken too far but there is nothing inherent in ABA that is abusive or morally wrong. ABA can be extremely effective teaching technique for children who really need the extra help learning. And I think the advocates who call ABA abusive are actually doing an extreme disservice to young children with autism who could benefit from the therapy. They are in effect withholding a necessary, evidence based therapy from children who might benefit from it simply because they don’t like it.

    • My understanding is that research and evidence is increasingly supporting the use and official recommendation of ABA. It appears to becoming increasingly “mainstream,” and I agree that this shift is for the best.

      Thank you for your comment, and for your support MJ.

    • amber says:

      I agree with your point “You have to give your children the ability to control their own behaviors and the ability to understand when a behavior is or isn’t appropriate” I have autism and I know I put a big burden on others who don’t quite understand why i do things especially with my meltdowns but I don’t agree with when the lady said that her son was stopped from doing a happy dance at aba to me one should be able to express themselves if they need to run/ jump/dance/ whatever let them because if u stop it they’ll go into a meltdown I know this because I’ve gone through it if u want to modify excited behavior get them involved in classes that promote exercise it will release their happy steam at times I catch myself happy skipping at the store or happy dancing down the sidewalk the trick is to let them have it throughout their day next thing u know they wind up doing it less because it’s out of their system how do I know this because I live it.

    • ettinacat says:

      I don’t think all ABA is abusive, but I have seen and heard of practices in ABA that I consider abusive. Examples:
      * At an ABA gym program I volunteered with, two autistic twin boys with severe separation anxiety were bodily dragged screaming from their mother to do work across the room from her, until they earned the right to get back to her. Then they would start the whole process over again. They also lied to the kids about how much they had to do (“just four more”, the kid does three more, “just three more”).
      * I’ve heard many stories of kids who have sensory issues being forced to do something they find overloading just because it makes them look normal
      * In an athletics program I volunteered with, a boy with Fragile X Syndrome who was extremely phobic of water (to the point of gagging from fear when he saw a puddle) was being hauled into the pool and forced to stay there until swim time was over.
      * The situation described here, causing a disabled child distress because he is showing happiness in an unusual way.
      If you don’t get it, imagine treating a non-disabled child that way. Note that when ABA was first invented, it was used to “treat” gender nonconforming children. How would you feel about an effeminate boy being punished for acting too swishy when he’s excited, or being forced to do football despite being terrified of it?

  8. blogginglily says:

    I have a tough time with any of the therapies Lily receives. How much is therapy and how much is just natural development?

    Whenever I think about stifling flapping behaviors I think about Julia Bascom’s “Quiet Hands” post. It really got to me. Have you read it? http://juststimming.wordpress.com/2011/10/05/quiet-hands/

    I also question myself on striving for . . . “indistinguishability”. Like how can I call myself an accepting loving father if I’m pushing my little girl toward this weird goal of hiding all her differences to appear “normal”, where “success” is defined by her ability to mask her SELF and pretend to be like all the other drones?

    I get the annoyance factor, the destroyed furniture, the shouted conversations. . . I’m just really conflicted by it all.

    • Hmm, see, I think there’s a difference between holding flapping hands, and trying to reduce a behaviour that is actually harmful for the child’s wellbeing and / or those around them, and I think the endless running around and humming I’m talking about isn’t in the merely-flapping-hands category. But I do understand your point. Nostromo’s comment above was very helpful I think, about making such distinctions.

      The question about the difference between natural development and therapy, in terms of outcome, is why it’s so important to do two things: Look at the existing research, and keep a regular diary of the individual’s improvement under various therapies. I do an ATEC score each month for my son, and keep track of whether the introduction or removal of therapies impact on him on the scales the ATEC measures. It’s not fool-proof of course, but it’s my effort to track these things. It’s important to try to track them in some objective way, at the very least.

      ABA itself does good tracking in my experience; measuring where the child is at and working towards improvements, then looking to see evidence of those actual improvements, and adjusting approaches where improvement isn’t happening or the child isn’t responding well. I still have some of the original ABA charts done up for own son, it’s amazing how far he’s come since they were first done up.

      I don’t think behavioural interventions are simply about a child appearing normal or indistinguishable, except where “normal” is short-hand for “can interact meaningfully with other people and the world around them” (or similar). I think there is a fine line there sometimes between what is trying to appear like everyone else, and what is the persuit of simple functionality (being able to focus, to interact with others, etc). Again, it’s a hard thing to distinguish at times.

  9. Sunshine says:

    Honestly… very thought provoking. Reading in the beginning of your post, I was thinking how throughout my son’s professional ABA treatment, we haven’t really concentrated on stopping harmless behaviors… I guess I’ve considered these sort of consequences, but I’ve always assumed I could explain it to him “when it mattered more” or something… I’m really sort of kicking myself right now for not giving enough thought to it. Thank you. This was incredibly meaningful to me.

    • Thank you Sunshine.

      It is one of those divisive and at times confusing aspects of behaviour therapy for autistic children, I think it’s made all the more challenging when as parents we are still getting our heads around what autism is and what it means for our young children. Even years later I still find my views on it shifting around, but I am increasingly of the view that politics and rhetoric aside, I must do what is best for the individual that is my son, in the world he happens to live in. Figuring that out is hardly a walk in the park either though of course!

  10. nikwesgro says:

    blogginglily’s comments are on point with mine. I, too, often think about Julia Bascom’s piece. My son gets ABA therapy, and so far it hasn’t really crossed any lines for us. Once, the therapist tried to make him stop clapping and shouting out loud every time he finished a maze (he was doing a whole book of them) and he completely crumbled. I quickly let her know that that was not okay with me. If he’s in the comfort of his own home, and that’s how he wants to express his happiness, then so be it. I do, however, want him to be aware of how his actions affect other people. Sometimes if he’s happily yelling in my ear, I’ll tell him it’s too loud and hurting me. He’s still young though…and I don’t know what will happen when he’s a little older and the “public” is more aware of it. My wish, of course, is to educate them on acceptance and atypical forms of communication (i.e. hand flapping to express happiness). But that’s easier said than done, and of course there’s no way to fully prepare everyone you encounter for how awesome your kid is, stimming and all. I really appreciate your honesty in this post.

    • Thanks nikwesgro.

      I noticed that you spoke of ABA done in your home environment, and how that impacts on your views of what your child should be allowed to do during the ABA sessions. I think that’s an interesting point, since our ABA sessions were all done away from home, with smaller sessions with other carers only sometimes done in the home enviornment. I agree that what we do at home – as for all people – fits slightly different rules and expectations than what we do in the general public. I wonder if it is perhaps better in some regards then to do ABA away from home to maintain that division of life sectors and expectations..? At least when it comes to classically autistic expressions of behaviour (obviously most other ABA skills are relevant and important in all sectors of life)..? However, the logistics of that are of course easier said than done, when so many of our kids struggle with changing environments and various costs are involved. Just a thought I had anyway from what you shared in your comment. Thanks for sharing your views and thoughts.

  11. Are you talking about ABA or DTT? Most therapies are ABA when you really look at them; and if a program isn’t tailored to an individual’s needs then why would you try it?

    I used a range of therapies and providers when my son was younger and all applied elements of ABA but none were marketed as such. We found OT especially helpful with his sensory-seeking behaviours, and any that we’re harmful were redirected; for example I bought him a crash mat so that instead of running into the wall he runs into the crash mat.

  12. Argh. Stupid auto-correct on my iPad! Putting in apostrophes where none are needed…

  13. Dr Rob Coates says:

    I’m a recently retired doctoral level school psychologist that used to work with autistic kids. I agree completely re ABA and I’ll be blunt…it’s abusive nonsense! What the behavior analysts completely ignore is the emotional life of individuals w autism. From 30 years of working with autistic kids I learned that one of the central features of the disorder is anxiety. Many symptoms one sees in these kids are attempts by them to deal with their anxiety and somehow control their environment. ABA can make them more anxious. In my opinion, it’s cruel and redicuolus circus training. Applied behavior analysis is based on obsolete thinking from the 1930s that posited individuals are like little black boxes that only behave based on stimuli from outside and one doesn’t have to be concerned with anything internal in the individual.

    • In my expereince and knowledge – which I readily accept is far more limited than your own – whether ABA is abusive or wonderful or respectful or cruel, depends on who is running the sessions, as is true of most therapies and interventions. If someone is acting like the child is meant to just rote-learn responses and appear normal, that is pretty damning; but if rather the focus is on teaching foundation skills of listening, following instructions and engaging with others, it’s more clearly in the best interests of the child.

      I suppose it becomes a question of what is inherent to ABA in itself, and at what point a different approach and focus by those using ABA makes it something other than what we think of when we say “ABA.” I don’t know enough about it to know where to draw that line.

      I still find myself wondering how much ABA added to the therapies my son was already engaged in, and whether the ABA itself was what caused the improvements we saw in my son’s responsiveness and behaviours at those sessions, or whether it was some other incidental aspect of those sessions (ie, that was not a necessary part of the ABA itself).

      Either way, I appreciate you sharing your experience and insights. Thank you for your comment.

    • nostromo says:

      I do not see see why ABA in itself is abusive or cause anxiety. When I went to school, I had teachers and situations that caused me anxiety and others that didn’t. It wasn’t ‘teaching’ that gave me anxiety! Same with ABA, it’s how it’s done.

      The other issue I have with critics of ABA is that they almost never present an alternative, and when they do it’s one thats completely unworkable with an LFA child who has an intellectual disability.

      That said, I would agree with you the more I read and understand that Anxiety is a central feature with Autism, and really to be avoided as much as possible.

    • Common Sense Revolution says:

      Thank you, thank you, thank you for that accurate assessment of ABA therapy. ABA therapy only became popular in the last couple of decades because governments were looking to fund programs that were “outcome” based. Or in other words, fund therapies that could provide some sort of record or data to justify the government paying for a service. Once the word was out that there was government funding for ABA therapy, so many Psychologists jumped on the bandwagon of a previously dead therapy and suddenly became experts in the field. And out of the woodwork popped ABA Behavioural Therapists and Interventionists??? Parents and Governments are being taken to the cleaner by paying the exorbitant cost of this excessive therapy.
      I couldn’t agree more with the anxiety aspect of Autism and how much ABA therapy can increase the individual’s anxiety. There are many more common sense ways to assist a child who has autism. Reducing their anxiety and increasing their methods of communication are two important factors. As a parent of a young man who has Autism and having worked in the field for 25 years, I sincerely appreciate your insight.

      • nostromoswife says:

        I don’t think that’s an accurate assessment at all. Here in NZ, there is absolutely no govt. funding for ABA used in early intervention. The exorbitant costs you speak of are actually just what you pay for a quality person to spend one on one time with your child doing something productive. It’s the one on one attention that is actually crucial , it you leave it to the Govt. the kids get minimal attention and no intervention that’s tailored to them.

        ABA has most importantly, given our son a method of communication and in turn that has hugely reduced his anxiety because he’s able to make some of his needs known. Not only that, his ABA therapists and supervisor are some of the most special people in his life.

        And don’t forget ABA is just a set of scientifically proven principles for behaviour and learning – to me, what people are actually criticising is not ABA, it’s specific early intervention programmes and they can only be as good as the people delivering them.

      • I think nostromoswife makes an excellent and otherwise overlooked point here, and one that matches my own experience with ABA and my son: ABA, rather than simply causing anxiety, can ultimately reduce and help to control anxiety in our kids. Expecting our children to move outside of their comfort zone and learn new skills can increase anxiety in autistic people, just like it does in most people, that in itself is not a reason to abandon the process. Thanks for your reply to the commenter nostromoswife, and for pointing out the situation in NZ.

    • Bessy says:

      Hi, Dr. Coates. You have a strong position. Can you share what treatment/s have you used in your work with children with autism, and what is the underlying assumptions of those approaches?

    • amber says:

      U r right “Many symptoms one sees in these kids are attempts by them to deal with their anxiety and somehow control their environment. ” I have autism and this is exactly me even as an adult with autism

  14. Lordreid says:

    I have tried ABA twice for my highly verbal, very bright but very anxious child with Asperger’s. Each time the very experienced, highly recommended therapist confidently predicted they would offer solutions to simple problems my son found difficult. However, what they did was ignore my son and an individual, dismiss anxiety as a ‘label’ and look at teaching him ‘compliance’.

    My son is highly compliant, he just can’t cope with classrooms or large groups of children. He doesn’t need to be taught compliance.

    Neither of these therapists spent time taking to my son about his needs or worries, but were content to suggest all the things they could do to make him ‘look the same’ as everyone else.

    All at great cost.

    I think ABA has its place and is very effective for some children. But these therapists only have one method of working and it is mainly based on teaching non-verbal children to be less different.

    I don’t think it works with HFA or AS.

    • I was surprised to read that it was being used for a HFA / AS, in my experience I’ve only seen or heard it be recommended for those at the lower-functioing end. So yes, on what I understand, it is far better suited to those with more extreme challenges, where more classic verbal instruction and problem-solving and executive functioning interfers with normal learning modes.

      I disagree that it is aimed at simply making children seem “less different,” unless you redefine “less different” to mean can function at a higher level, to that more similar to their peers, in which case it is an admirable aim.

    • Sally M says:

      Hi Lordreid,
      I tend to disagree. My son is high functioning. ABA is like anything else. The quality of what you get matters. When he was a little guy the ABA was pretty extensive and his language started off limited, but his therapist was great. Now he is almost 7. Most of our programs and data collection have morphed into something more “typical”. We have a schedule on the wall and check off each item as we complete it for our morning and night routine. When more challenging behaviors arise we try different programs with him. We slowly increase times in between rewards. Which do not have to be food obviously. I will not claim that ABA is for everyone on the spectrum, but that is because I have not worked as a therapist nor have I had enough experience with children on the spectrum. Its like the saying goes ” when you know one child with Autism, you know one child with Autism” no two are the same. ABA is a concept I am comfortable with myself. I do not think there is anything wrong with teaching good behavior and rewarding it. I would rather reinforce good behavior then constantly punish bad behavior. (I do not consider hand flapping bad behavior but have provided my son with replacement behavior of jumping on a trampoline , instead of jacking up his calf muscles with the tense body jumping and hand flapping) I think one of the challenging part in the carryover with ABA as a parent is remembering to reinforce “good” behavior that we have been brought up to see as typical. For instance by son used to have a lot of aggressions towards me. I found it somewhat odd to compliment his good behavior when he wasn’t hitting me and ignore him when he was , but it worked. We even had “good hands” programs running at school as well. The aggressions subsided fairly quickly. Every once in a while we have an episode but I still do the same – just ignore it and later talk with him about his feelings and why he was frustrated. We will talk and then come up with some solutions to his frustration that don’t involve hitting. Then I will compliment him for coming up with a different solution (which just took some brainstorming) We will talk about it being wrong, he will apologize and then I will compliment him for coming up with a “big boy” solution. I will tell him I really like how he used language to tell me how he felt instead of hitting. The compliment is the reinforce. And maybe the following time is frustrated and catches himself before having an aggression, I will remember to compliment his skills. Its so consuming sometimes, but for us it works.

    • danalyn says:

      I am the parent of a (now) 18-year old HFA and a 10-year old AS. My oldest was diagnosed with Autism at 2 1/2 and received intensive ABA until he started Kindergarten. The program then shadowed him through school until he no longer needed an aide in 4th grade. The program evolved based on the child’s needs and as he progressed it focused on his social deficits. We worked on pragmatics and body language in more detail at the end of our time with the program. In relation to the original blog entry, we made a decision to curb his “stim” behavior while he was in public and allowed him time to do it at home when he was with family. We had visual gestures to remind him and he knew to redirect. He now paces if he is anxious or needs to soothe himself, which he has chosen as a socially acceptable substitution. This was a key component to his program, but, of course this may not be an option for others. He is now functioning at as NT attending a community college and working part-time. Although we have not done formal ABA with my younger son, he has been in a behaviorally based therapy program which has incorporated many of these principles.

  15. grahamta says:

    We did ABA for a little over a year…now I just homeschool her on gut instinct, borrowing the best from therapies, and Floortime. There have been many books written by Aspies…they talk about sensory needs, why they did things as a child, etc. Because it is real and these are human beings with feelings and a different neurology, I feel you must put full effort into understanding why the behavior occurs or else you will never understand the child. Unfortunately, ABA typically does not do this, and this is when the problems occur. If anyone would have held my kid’s hands down, I would have fired them on the spot.

    • kay says:

      Many people with Aspergers have written that this takes away from their expression and ways to interact with their world. While this may be the case, I agree with the poster, they need to learn what is appropriate and when – just like any child. Especially at 6, and non-verbal, it may be difficult to reach the child to tell them that “no, you cannot wildly gesticulate right now, you might hurt somebody in the store.” Or “no, you can’t touch the buttons on this computer right now, someone is using it.” (I actually had a child playing with the touch-screen register in a fast food chain, and when I tried to stop him to lock the screen to prevent the report I had up from being modified while his mother was ordering, he ran out the door.)

      I do agree with you, getting to know the child and why they are flapping and running and loudly humming is good. I disagree in that teaching a child with autism basic manners (in as much as possible) in different situations is bad… Allowing the child to flap and run at home is one thing. Allowing them to do it in a store is quite another, and possibly dangerous…

      Don’t get me wrong, I’m not doing the equivalent of calling a meltdown ‘just a tantrum’ – though it might sound like I am. I’m also not saying that they will be or even have to be the perfectly mannered little boy (or girl). I am saying the equivalent of ‘just because a child has severe Cerebral Palsy doesn’t mean they don’t need to learn their letters since they’ll never write with a pencil.’

    • (To grahamta:) But it is behaviour analysis at its core, it’s right there in the name! If an ABA therapist is not attempting to analyse and respond to the purpose of the behaviour, they are obviously failing a major part of their job! I don’t think it’s fair or accurate to dismiss a therapy, based on misapplication of its core principles.

  16. grahamta says:

    So, I have seen many ABA therapists in action. I would say my daughter’s was the most respectful of the therapists, and I used the techniques I learned from him. But it only got us so far and then we stopped making progress. Only in following my child have I figured out what was truly going on (long story there, refer to my blog if interested). I am not dismissing all of ABA, I do you some of the things I have learned. But to have it be a way of life did not work for my daughter or for us.

    As for flapping being dangerous…really? I have let it go and this is what I have learned. High rapid flapping at face level for my child means she is either a) sick, b) in pain, or c) has to have a BM. I am not kidding you, it actually meant something (as other adults with autism have said)! I also teach her manners (after i quit ABA I went against the “just ignore it” advice and did stern warnings, time outs, and taking away privileges and the kicking, hitting and biting stopped; I make her say sorry; I make her say thank you; we are working on wiping with a napkin; she is potty trained despite severe body awareness and motor planning issues; on an on), but I don’t believe stopping her from flapping at this point is about manners. It is her form of communication and since she cannot communicate that issue any other way, why would I stop it?

    • kay says:

      I’m not talking about flapping her hands infront of her face, I’m talking about wildly flapping where the child knocks things (like glass) off of shelves, etc.

      I would have a tough time saying ABA is for all children. Even sources I’ve found show that it’s not for every child. (http://verbalbehavior.pbworks.com/f/ABA%2520after6.pdf – specifically page 2, where you can see most children made significant gains in standardized testing, however, there were a couple that didn’t.)

      If you found something better for your child, that’s awesome; I’m absolutely not saying it isn’t. 😛

    • Flapping can serve different purposes for different kids, obviously. For my son, flapping is only done when he is extremely happy, not when he is sad or anxious, so replacing it with a less intrusive and alienating option makes sense. He also has words to communicate with. If a child flapped for other reasons or had no words, one would obviously consider responding differently. I think we have to be careful about telling parents they are bad or ignorant for trying to control flapping and other stims, considering the huge number of variables in the function and other skills of the child at issue.

      • Kay says:

        Sorry for the belated reply – finals and such got crazy.

        I did not intend to call anyone bad or ignorant for any reason!

      • Kay says:

        Oi – ignore my comment, I need to learn to read ALL of the posts before posting. 🙂

      • grahamta says:

        I hope you get this….fast forward a couple years and….the flapping ramped up! It evolved slowly over time. It really seemed out of her control though, and I have read where people say it is just that for them (like a reflex). The amount of flapping is not easily tied to happy, sad, stress, etc. now. Recently I noticed when she has anything on her body, heavy or very light weight coat, it is almost non-existent. My child now craves her rain coat (very light weight) and wants it on all the time. And whens he has it on, nearly zero flapping, easier to re-direct, and more focus. I have no idea why this is the case…a little something on her arms helps her fell her arms, the sleeves touching her hands does something, who knows.

        • kay says:

          I believe what she is craving is often called “deep pressure,” and is one of the things that many (if not most) people with autism desire. Dr. Temple Grandin came up with her human cattle squeeze and built the machine multiple times because she wanted / needed it that badly. (She also apparently did some research on it much later, http://www.grandin.com/inc/squeeze.html & http://www.ncbi.nlm.nih.gov/pubmed/10200837 – I’ll have to read these in a bit!) I’m not her doctor, I’m not even *A* doctor yet! So please take my advice for the potential grain of salt it may be worth.

          I can’t tell you why it works for kids with autism, ADHD, etc. (I’m not an expert… yet! I was just accepted to a Special Education Ph.D program with emphasis on autism next Fall!) But there are some theories, such as if they’re overstimulated, they can focus on it to block everything out which is calming. If they are understimulated, it provides a comfortable and “safe-feeling” stimulation without having to stim. It’s often used to treat sensory processing or anxiety problems. I’ve read that there is simply not enough evidence to be called a “research-based therapy / strategy,” but they were fairly old articles, so that may have changed. I will have to look into it. (Particularly with my wish to research the incorporation of technology for the benefit of people with autism.) It’s possible that if she had a “deep pressure vest” or shirt (which looks like it can be hidden under clothing), that this might be a more invisible replacement for the raincoat. http://funandfunction.com/sens-ational-hip-hugging-tee-long-sleeves.html

          I do know I LOVED heavy blankets, hiding under things, hammocks, etc – and if I ever had a hammock swing, I’d never come out. I also (and still do) rocked as a child. Most of the time, I don’t even realize I’m doing it until many minutes later. (As a child, I almost never noticed until someone pointed it out to me.) I wasn’t diagnosed with autism, but I was a child of the 80’s, and if you weren’t on the low-functioning end of the spectrum, (assuming your doctor had even heard of autism) you were usually diagnosed with ADD / ADHD (which I was, and which is now ADHD-I (impulsivity) & ADHD-H (Hyperactivity)). I don’t know WHY it works – for me or anyone else – but I do know that I found it both “comforting” and “comfortable.”

          Thank you for this post, I’m considering options on what to do for research, and it has given me food for thought!

        • grahamta says:

          Thanks for the comments! Actually, she has never liked the heavy blankets and weighted vest didn’t work thus far. She craves a lot of things, but not that. I think there are a range of things these kids crave, and if your child doesn’t respond to weight many are at a loss how to help. I follow her lead and we now have a box of sensory tools. She craves smells, pressure on certain joints, oral, many things. Recently we discovered a light coat calms her…she feels safer in it and requests is all the time, then won’t take it off.

        • Kay says:

          It might be an association between the thing itself, or the type of material. If it’s a raincoat, does it make noise or crinkle?

          I wish you luck with her! Keep us updated, you’ve peaked my curiosity. 🙂

        • grahamta says:

          Played around with it a little bit…my best theory…likes the inner polyester material and something touching her hands….the sleeves are long. Whatever the case, the raincoat is going with her to school and will be in her school education document!

        • kay says:

          So, it’s been over a year now (seriously, where does the time go?) – how have things been? 🙂

        • grahamta says:

          Kay: update…she likes a light, long necklace to calm the flap on outings. light blanket on couch while reading or watching TV. something sticky to play with (stickers and window gel clings) also replaces the flap. She led me to these discoveries. A long road, but I am happy I just didn’t say stop and block, as suggested by the school. It needs to be replaced by something that feels equally calming from her point of view.

  17. grahamta says:

    So, I thought about all the above, and it is a very good discussion. It is helping me clarify my thoughts too and I am very sorry if I offended. I didn’t intend to and was only sharing MY experience.

    My kiddo flaps when happy too. My kiddo is fairly verbal. BUT when she is in the slightest bit of distress, the words are harder to get out, and that is when the flapping can be very informative. And if I would have stopped it, I would never have known what she was trying to say. Also, when she had ABA, they kept redirecting her flapping and other stims, and it is how she relaxes, so she started getting constipated and that lead to huge issues. In my experience, flapping can have upsides…relaxation and communication. I agree that everyone needs to do what they need to do, but please consider my experience too if you are reading this and trying to figure out what to do about flapping (that it might be informative to roll with the flapping for awhile, see where it leads…try to understand what it means).

    I am not saying anyone was bad or ignorant….God knows this is the hardest problem I have every encountered…knowing what to do with a child with autism. All my friends do ABA, and it is fine with me. And as I said, I still use some of it and it is helpful. Everyone needs to make their own choices and we don’t have all the answers and every child is different.

  18. lucy says:

    Its hard to take in a new systems when you see your child so small trying to adapt, and the parental instinct kicks in. You don’t want to see your child hurt. So as a parent, we become defensive, not knowing that “we” may be doing more wrong than good. When children with autism are small, its a lot more easier to nurture the child, but we forget that they will grow up and what they do now (if we don’t try to correct) will hurt them and us in the future. In my case with my husbands son, I always have to remind my husband, that the corrections that we do now will benefit his son in the future. He is growing up and what used to be cute at one time, its annoying today and can be later in his future and society will not be kind to him. We keep working on Tim each day to adapt more into our society because we are not always going to be here for him to take care of him. Its not easy but we keep on working with him. The small, sweet, laughing, running, flapping child he was at one point and that people did not mind is gone because he is no longer 2,3,4,5 or 6 but 10. And the older he gets the more work we have because all those things he used to do aren’t cute anymore and people don’t like it. Our work has paid off. He does them less only because we continue in correcting and working with him. We love him very much and treat him less like his condition. Then again, each child is different.

    • I’ve come to see things in much the same way as you Lucy, as time goes by and my son gets older. He’s almost 8 now, and as you say, what once was considered cute and innocent, starts to be seen by others as annoying and unacceptable. It is hard trying to figure out what needs work, what can be worked on, and what is best left alone or can’t be addressed. I do think it’s important that these things are worked on – if possible – while the child is young before behaviours become so entrenched that addressing them later becomes that much harder for the child; not trying to teach them can itself be the long-term hardship.

  19. Olive says:

    If your son is so happy he’s dancing all the time, well, you must be doing a whole lot right. Don’t worry; you’re fine, dancing is fine, I do it too. 🙂

  20. Wife of Jack says:

    We have noticed the repetitive styles of other autistic children being observed and incorporated into our son’s repertoire. Bouncing excitedly on tip toes is the latest acquisition. We have been attending therapy with another child recently and this was copied. We have had a few different styles of minor stimming occur over the years and because it has never impacted too much on social or educational functioning we have just mostly ignored the issue. I guess others might notice but it’s not a big concern for us. The constant humming that he had a strong need to do when he was little was a much more worrying habit. I would have challenged any therapist to alter that to be honest, it was very ingrained. I can relate to your feelings about a young toddler being forced to refrain from an activity that is as hardwired as breathing. I would have felt the same feelings of discomfort if a therapist had suggested we try to stop the hooting and humming as at the time it was one of a very limited group of styles he had to express himself. Fortunately he stopped this habit when he was able to communicate more clearly. I guess if he was still doing it I would be feeling some regret now as in a classroom it would be very annoying for the other children. In fact no therapist suggested trying to alter this habit, perhaps because they had high expectations that he would be able to talk eventually.
    The latest happy bounce will eventually extinguish itself we hope, as have other styles of self stimulation, our son seems to be in a constant state of reinvention.

  21. Madison says:

    The therapist should probe an appropriate replacement for his behavior. For ex, clapping when he is happy. And it should be done by means of differential reinforcement until they fade out his usual behavior and replace it with a new one. Its a long road, and you have to always seek an outlet

  22. Pavel Kasprzak says:

    Hi, I live in Poland and my one year old son has just been diagnosed. As to my knowledge, ABA is not available here, but Early Start Denver Model is. My point of view is quite specific and I share the attitude presented here to just respect the world of autistic child and his right to focus on what he chooses to focus. I also find many things in proposed therapies cruel. Or sometimes counterproductive. What I very much like in your attitude is what you describe as teaching your child what every child should learn – that certain behavior is not appropriate in just any circumstance. I do not want to say anything critical about ABA therapy, but I think you were very much right sort of boycotting their efforts to eliminate your son’s dance of joy.

    Most of the therapies I read about are behaviorist. That is understandable for at least two reasons. First of all we do not have the slightest idea, what is going on within that mind, which is so much different from ours – we are sort of forced to concentrate on behavior. The other reason is “institutional”, so to speak. Patterns of behavior can be named. The strengths and frequencies can me measured. So the effects of the therapies may be put in numbers that no one can doubt. That simply pays.

    Well, this does not eliminate the most important issue – even though it perhaps must remain unsolved forever – what is really going on within that little, somewhat “twisted” mind. The radical behaviorist point of view is that because “mind” is inaccessible and “behavior” is, we do more that just focus on accessible part of the problem: we say the inaccessible part does not exist or at least does not interest us. This is what makes me fear. Human beings are not just behavior – they are a lot more. But that is a philosophical approach – this is considered immaterial when it comes to hard reality of therapies that are badly needed.

    For me though, it is like teaching mathematics. There is a school way of doing so. It is – worldwide – pretty much about forcing kids to know the Archimedes’ original formula about a sphere’s volume. Every pupil on Earth has to know it. Why? There is not a single practical reason – nobody needs to calculate spheres in his practical life, even engineers. So why again? Sphere’s volume formula has its’ very practical meaning at school – it is very useful in schoolbooks problems to solve. But they are primitive, schematic, not really teaching anything, to name understanding at first place. And they also do not have anything to do with any real problem of a real life. Well, apart from the fact that Greek mathematics is (or should be) a part of a culture we belong to, sphere’s volume is a perfect task for autistic mind – by the way. Archimedes, as far as we can judge now, must have been autistic, provided his famous “dance of joy” (he performed naked) and the well-known fact that he got killed studying circles drawn on sand not even noticing the threat. The thing that might make sphere’s volume formula interesting and important part of human education today is of course about understanding why this volume is this and that (can’t type the math symbols here properly – sorry). No school today tries to teach kids this – every school require kids to memorize the formula with no understanding where it comes from. The reason is obvious – we know how to check things on simple tests and we do not know how to check and measure understanding. School is today about memorizing things and mastering some very basic skills and not about facing intellectual adventures whatsoever.

    Therapies dealing with autism are pretty much the same. They focus on eliminating what is considered bad, not proper and sick. I am not trying to say we should tolerate various definitions of “normality”. Of course we should, but this is not a point, especially when it comes to raising kids – it is then our job to tell them what is proper and what is not. Full respect for their rights, sure, but it is still our job. The thing is how we achieve this. We can train the kids as Pavlov did with his dog and we can let them develop and understand. Pretty much as it is with math at school – there is a world of difference between just remembering the formula and understanding why it is correct.

    My one-year-old son has not yet developed those typical autistic features. I see him enjoying communication but I see twists of his perception that make it hard and sometimes impossible not only to communicate but to tell us, parents, from the background noise he clearly perceives and finds annoying. I know that if I fail to reach and help him somehow, he will become autistic as autism is most often described – a social disorder. Because so far he is clearly not socially impaired. He will be. Therapies dealing with behavior do not help us with that at all. On the contrary – what they offer by reducing “bad behavior” and replacing it with an accepted one, in fact develops autistic features. Contractual vs. empathic communication being on top of that. Remember, homosexuals were once “cured” with electric shocks – and it worked!

    • kay says:

      There was a child in a 6th grade inclusion class of mine this past semester. He also had processing difficulties in screening stimuli. I don’t know what other therapies he’s had, but in school, he uses a hearing aid with a sound-field device (basically, a microphone that the teacher talks into, which gets piped into his and a few other kids’ hearing aids. (Or something like this: http://www.phonicear.com/sf.aspx)

  23. Robbie says:

    My view is that every child diagnosed with ASD really needs to do 6 months of ABA. This equips the parents with the tools too raise their child in the way they see fit. There is nothing more convincing than to you see your own child behaviour change before your own eyes. I think it’s ok to let some behaviours lapse, but you need to be able look objectively and step in when you, the parent, consider it to be a problem.

  24. Bessy says:

    The original post concerning the “happy dance” brought tears to my eyes. Children with autism are children first and the things that they do are so cute and amazing. I can understand why a parent may not want them to stop. You have the right to choose to use ABA or not to use use ABA. I think some of the posts here are making presumptuous claims about ABA being unethical. ABA is very ethical. It is the most ethical therapy for children with autism. ABA professionals work hard to provide the most effective interventions for individuals with special needs regardless of their level of functioning.

    So many of you have heard negative things about ABA and have made statements based on propaganda. For example, one mom, Pavel, states that she finds many things in ABA cruel and counterproductive. She claims that she has no experience with ABA. I can only assume that her statements are based on what she has heard. Her son is enrolled in the Early Start Denver Model. I believe that she will see good results from this program. However, I must note that the Early Start Denver Model is a behavioral/ABA based program.

  25. Sally M says:

    Isn’t teaching kids “compliance” something every parent does , regardless if they are on the spectrum or not? No matter who you are , as a parent , you are teaching your children to be the way you think is “right”. Nobody said to stop there. Its your job as a parent to also teach your child how to think for themselves, but how can this come if you haven’t laid down a foundation for them to build on. My son who is on the spectrum wants very much to fit in with his peers. Didn’t you? Or did your parents just say ” To hell with it honey, do what you want, act how you want. People “like that” don’t matter” . Maybe they did say that , BUT only after they taught you what was “right” or “acceptable” by their own standards, undoubtedly somehow influenced by society and its views. Many people with Autism go on to marry and have families of their own. Maybe your son with Autism will marry some day. Should you not have taught him that eating dinner while staying seated is a good family tradition? Or should you just let it go because he is unable to sit at the table. Should you not be identifying where the difficulty lays for him in order to provide a socially acceptable replacement behavior. Should you not be reinforcing good behavior while he is seated, just because you view it as training an animal? Do you not think he will be rewarded by a happier wife and kids if he joins them for dinner? What about that meltdowns he is exhibiting when he is frustrated or anxiety has set in during certain situations . Will you just dance around whatever gives him melt downs or anxiety instead of doing anything about it? Is bringing him to a place where he may be provoked and then teaching him a skill to handle it so bad? No, I am not saying be “compliant” to an unfair person. I am saying teach him a skill he needs to function. One that doesn’t involve having a meltdown. Don’t you wonder what that will look like at age 40 with his wife and kids. Or better yet the fun part, when he is still a teenager in your house. Wonder what that meltdown will look like. ABA is not just training, its providing a foundation to build on. A foundation that is lacking in many people on the spectrum. Once these skills are taught and behaviors decreased the object becomes to apply these skills to every day life. I understand that some of what I am saying may be out of touch depending on how affected one is by Autism , but for many kids the biggest difference you can make in their life isn’t just by getting 40 hrs of ABA. It is first the understanding that what comes naturally to you , may not to them. They may need you to show them. To “train ” them. One can only reasonably conclude that would mean we need to teach differently. Its neglectful to disregard the part where they need you to teach them things that came easy to you and then throw them into the world full of expectations. Something as simple following a multi step direction from his/her boss could and probably will be a struggle for them if we neglect to accept the fact that they need to be taught things come naturally us. Maybe the ABA of him throwing a piece of trash away and getting an m&m isn’t as ethically wrong as you think it is. Maybe if he learns how to follow a multi step direction he will be rewarded with higher pay at his job. Everybody is so busy always thinking they know what is best for their kids just because they are parents they forget to remember that you only know as much as you have been taught. If your child does not learn appropriate table manners the way you did, then its up to you to teach them. If your child does not socialize appropriately and make friends as easily as you did then you need to try different ways. Don’t scrutinize parents or organizations that are trying to help their children. If ABA doesn’t work and you are so set against it then you should be trying desperately to find other ways to help your child. I am not an advocate of ABA , but certainly if you find something else that helps our children and is ethically acceptable in your opinion (not one based on upbringing and society’s views of course), please share it.

  26. MelissaM says:

    Thank you for this post. At first I was with you on not suppressing the “happy dance” but then I changed my mind when I read about the outcome you are having. Any updates on how he is doing?
    My son is 22 months and about to start ABA. I definitely want him to be happy and be himself but I think his happiness will be compromised if he’s not accepted by society. I think the previous poster is dead on. I had some ASD traits when I was a child and I remember being forced into an acting class and having to learn to have more affect and not retreat socially. And you know what? It worked. I’m now a successful doctor. I do feel like I’m acting everyday but I think I am happier than if my parents had let me just withdraw from the world and read books like I wanted to. I have also learned how to stim without attracting negative attention though sometimes I still jump and flap at home but I mainly pace. I hope that I can teach my son to cope similarly and if ABA can get him there I’m all for it.

  27. Sarah says:

    Hi there, I came across your blog when researching ABA in NZ as we’re trying to figure out if it’s something we should do or just stick with Speech and Occupational Therapy for our 20 month old son who has Autism. I have no idea if he’s low or high functioning yet as he’s not even 2 but I’ve had it drilled into me quite a bit that ‘early intervention’ is the key for Autistic kids and I’ve been told if we do ABA then he’ll eventually hopefully be able to talk, which is my number 1 goal! God it’s so confusing. ABA is so very expensive and we’d be fully putting everything on the line in order to do it but if we don’t are we sentencing our child to a lifetime of failure?

    I guess my question is, how do you know which therapy to do? How do you know which is best? Apologies if this isn’t the right forum for my rant/questions 🙂

    • Hi Sarah. I think I can help you – I hope I can help you.

      First off, your child can learn to talk without ABA, whoever told you (or implied) that it was necessary or that it would guarantee the ability to talk, was being highly irresponsible and is simply incorrect. ABA is a helpful but completely optional approach to autism, and it can be counterproductive if done poorly, so be very careful who you choose to work with your child. Do not – do NOT – put yourself in financial hardship just to access ABA, you have many other free and extremely helpful options available to you in NZ, that includes occupational therapy, speech therapy (PECS is a fantastic communication system that was key to our son learning to talk in sentences and to be more meaningful with his speech, do ask your speech therapist specifically about PECS, they’ll be familiar with it), physiotherapy, educational psychologists, all of this is FREE in NZ. You want to know what therapy to use, go with what your son’s specialist advises, they are the experts on autism as it affects your specific child – listen to them and follow their advice.

      One more general point – yes, early intervention is very helpful, but for some people it doesn’t matter how much and how intensive the intervention is, there is a limit for what some can achieve often because of other coexisting conditions that may include intellectual disability. As your child ages you will get a better feel for what they may be capable of – 2 is such a young age and I’ve often read that you can’t tell how majorly autism will affect a life long term until around the age if 7 – god knows that was so true of my own son who went from rather severely autistic to quite mild between the years of 3 to 7 years old. There are just no promises in autism, it is very personal, you do the best for the son YOU have, and for that you must listen to your own son’s specialist. You’re at the start of a huge and very individual journey, I wish you and your family all the best, and please feel free to come back any time to ask any questions at all.

      • Sarah says:

        Thank you so much, I really appreciate you taking the time to reply back to me!

        We already do Speech Therapy once a week and are increasing it to 2 sessions a week and adding 1 x Occupational Therapy session a week as well. These are all private as I wanted to get him started immediately and I understand the public system takes forever.

        I was told that I wanted to get him into therapy ASAP whilst he’s still young so we have a better chance of him becoming mildly autistic, the specialist put him at moderate – severe as he wasn’t talking or gesturing at all. After 2 months of speech therapy he now says 5 words (only copies but it’s a start) and waves and points to things in books so it’s a huge improvement! Hopefully more sessions will help.

        ABA looks intensive but in order for our family to achieve the necessary 20 hours a week they advise (as a minimum) I have to work full time, but in order to actually DO the ABA therapy I’d need to be with my son for the 20 hours a week with the therapist so it’s a bit of a two edged sword really. We’ve figured out it doesn’t really work for our family practically speaking but I’ve had it engrained into me that it’s the only way to ensure he is ‘only’ mildly Autistic. We don’t believe our child has an intellectual disability at all, in fact we’re pretty certain he doesn’t.

        Thank you so much for challenging that thought and I hope to god it turns out to be correct for us and thanks so much for writing this blog! 🙂

        • nostromo says:

          Hi Sarah, I have a son who is nearly 8 and who does not speak. He does regular ABA about 12hrs a week.

          My first comment to you would be DO NOT PANIC!
          My second comment would be do not listen to those who put fear into you by saying you need to get him into therapy ASAP or talk about ‘windows of opportunity’ etc. It is BS and fearmongering. I have no doubt those telling you this DO actually believe that message – but I would say they are wrong.
          ABA will not make your child any more or less Autistic. It is not a panacea.

          Also do not buy into the message that you must do X amount of hours a week (and bankrupt the family). If they are not flexible on this look elsewhere.

          I would however recommend ABA in general as a TEACHING method for some children with Autism.
          In my opinion the most important thing my son learnt through ABA has been the skill of ‘attending’ I.e. the ability to be able to sit and focus and engage when requested, and to respond to requests. Prior to that he would ignore us. The second most important thing (and something that derived from the first thing) was learning basic PECS and then iPod useage for simple AAC. Important because it gave him the ability to tell us what he wants and that made a massive difference to his happiness, lowered his anxiety and removed his self injurous behaviours.

          Your son will be able to learn at any age. It is true that some things will be easier while he is younger, but I don’t believe is as important as it is made out, and indeed it seems many autistic people are late bloomers.

          Also this post appeared on Emma’s hope book yesterday, I do not agree with Emmas parents on absolutely everything (most things) but I think it would be well worth your while reading as it speaks of exactly your situation.

          http://emmashopebook.com/2014/07/24/alone-frightened-worried/

        • Sarah says:

          Thanks so much Nostromo, appreciate the reply and thanks for the link. It’s very much like our situation! I think we’ll just stick with SLT and OT and reassess in another year. He is making progress, however big or small that is and he’s such a happy wee child so I am happy with that.

          Thank you again 🙂

        • Kay says:

          Respectfully, I disagree with certain points, Nostromo. There are many (MANY!) studies done with children that started therapy (usually ABA, but it wouldn’t surprise me if there were others) at different ages, and for the most part, the results are the same: The earlier the child starts, the better the outcome.

          I do agree that fear-mongering is not the way to go, that ABA is not a cure-all, and that promising speech or a more mild form of autism from Early Intensive Behavioral Intervention (EIBI) is irresponsible (as noted by Autism&Oughtisms), but it is more than that they “DO actually believe that message,” it has been shown to be true in the vast majority of scientifically researched cases. (IMO, it sounds like they are using scare tactics to promote something that has been proven, which is not great.) No, the research cannot take the same particular set of children and both give, as well as deny, therapy at the same time to assess the outcomes of the same child given their age. (For obvious reasons! lol) However, with the amount of children in these studies, it is statistically unlikely that the amount of children that started therapy around the same baselines but at different ages and did better if they were younger after an elapsed time is simply “wrong.” (I hope that made sense… I just woke up, and am still a little foggy of mind.) I can link some of the studies I looked at for classes (and am referring to here) at the end. And the link you posed seems to be from a victim of just such a bunch of “therapists” – those who ‘forgot’ to analyze the child & their behaviors! It is called Applied Behavior ANALYSIS (not “get the child to do / extinguish this thing at any cost”) for a reason. It does happen (increasing therapy hours but not taking the child into account), and it is usually detrimental. That is the therapists fault. If you do not see results in a timeframe you feel comfortable with, definitely try something else and go elsewhere!

          In sum (or TL;DR, lol), I agree that EIBI is important, but I disagree with how they seem to be promoting it to Sarah. Because of the promotion, I would also advise to look elsewhere. It seems they (both, your blog-link and Sarah’s specialists) solely want you to pay them as much as possible and will use any tactic they deem necessary to get you to do so, which is morally reprehensible.

          @Sarah – without an Intellectual Disability (ID), it is very likely that he will be less severely affected (or less severely autistic) regardless of age / type / amount of therapy than if he did have an ID. It is one of the things that psychologists call a “buffer” factor for autism (and many other disorders). Basically, it means that, when the factor is present / absent, the effects will usually be more mild than if it were the reverse (IE: if the child had a lower IQ, the effects of autism would be more severe for that child in any situation, regardless of anything else than if they had a higher IQ). My lay-person’s guess is that the child is better able to figure out how to work around the problems caused by the autism.)

          Also, ABA does not have to be done by a specialist! If there are free services in NZ (I’m from the US, so I don’t really know), then that may be a good way to go for you. Learn from the professionals during these services and apply them at home. The consistency and reinforcement between home and school has also been shown to help tremendously, and can be a tremendous monetary savings! And I agree, AAC (sign language, PECS, iPod / iPad apps (free or paid), or any other form of communication that the child picks up) has actually been shown to help the child speak verbally (if they are able), as opposed to fears that children that learn alternative communication forms will completely disregard spoken speech.

          Lastly, no one should have to mortgage fiscal security for their child’s future… I’m glad it sounds like there are other options over there! No one can expect a parent to do more than the best they can. It will all work out. As my mother always told me, if you do what you think is right, it will always sort itself out. 🙂

          Peer-reviewed research on EIBI that I was referencing for Nostromo:
          http://www.icbsr.ie/List%20of%20Studies%20Supporting%20the%20Efficacy%20of%20Early%20Intervention.pdf
          (I’ve not looked at this closely, it was just something that came up listing other articles when I was looking for a link to a title, so the articles listed may not be as reliable (IE: not up to the standards of the stringent peer-review process). The rest are articles that I read for classes and are.)

          http://www.behaviorpedia.com/wp-content/uploads/2013/01/Peters-Scheffer-2011-meta-analyse.pdf

          https://www.researchgate.net/publication/230750559_A_meta-analytic_review_of_the_effectiveness_of_behavioural_early_intervention_programs_for_children_with_Autistic_Spectrum_Disorders

          http://www.auburn.edu/~lal0011/autism/eldevik.pdf

          https://www.researchgate.net/publication/24422642_Meta-analysis_of_Early_Intensive_Behavioral_Intervention_for_children_with_autism
          (Sorry, looks like you have to sign up for this one, but it should be free here. A lot of the articles I saw I got for free through my school, so hopefully the links I’m giving you are free to access versions.)

    • M.J. says:

      @Sarah,

      Just to add my 2 cents worth – the answer to your question about how you know what therapy do is that you don’t know. There is no way to know whether your child will or won’t respond to a specific therapy until you try it. And even then the outcome of a specific therapy is highly dependent on the specific therapist and how well they can adapt their specific therapy style to your specific child.

      As a general statement, ABA is one the best therapies that you can provide for your child with autism. It doesn’t work for every child but it has the potential to help the majority of children with autism. But you have to be careful how you structure it and what form of ABA you use – there are many different styles of ABA and different ways of approaching the programming. The therapist should adapt the ABA programs to your specific child rather than force your child into a specific ABA programming style.

      To give you some examples, I have three daughters with autism – a set of identical twins and their younger sister.

      I can say with absolute certainty that the twins would not be were they are today without the almost eight years of ABA they have had. We have mostly used a style of ABA called DTT with the twins and it is perfectly suited to how they can learn. The programs literally taught them how to how to talk, to read, to spell, and and how to better regulate themselves. It hasn’t (yet) brought them up to the level were they are able to have a conversation but it has enabled them to stay somewhat on the same level as their peers.

      Now, my youngest daughter is a different story, she has had ABA for about five years now and it has helped her somewhat. But she absolutely hates the repetition of standard ABA. She will do a program once, maybe twice in a row before she refuses to do it again and, as a result, we have had a harder time finding therapists who can effectively work with her. Some of the therapists that did an absolutely excellent job with the twins absolutely failed when they tried to work with her.

      And when I say their absolutely failed I mean she broke the therapists – they tried to push her and she pushed back to the point were she won the battle and they had to back down. There are few things funnier than watching a very young girl with autism outsmart a master’s level clinician at their own game.

      But when we found therapists that could adapt their thinking to work the way that she wanted to work the results were excellent. As strange as this sounds, ABA has taught my youngest daughter imaginative play skills. It has taught her how to better interact with people. These are not the standard outcomes you hear about from ABA.

      However, having said all of that, your child is not doomed if you don’t do ABA. This might be an unconventional view, but it seems to me that as long as you do some form of therapy your child is going to be better off than if you nothing. All of the research on all of the different styles of therapy seems to point to the idea that the reason that early intervention makes a difference is that you intervene and try to push your child to learn.

      It doesn’t matter as much if you use speech, OT, ABA, floor time, Son Rise, the Denver Method, or what other form of therapy is currently in vogue. The benefit comes from taking an active interest and finding therapies that work well for your child rather than using a specific therapy such as ABA.

      The trick of treating autism is to find therapies that you are comfortable with, that don’t break the bank account, and that your child responds to. And unfortunately the only way to find these therapies is trial and error.

  28. Mommy Soleil says:

    My son is high functioning and was not diagnosed until he was five and in school. The school had their own version of ABA and it made my son’s behaviors worse. He was aware enough to know they were trying to change him even at such a young age. It was extremely damaging to his self-esteem to be constantly corrected and then to have a laundry list of complaints expressed to me every single day when I picked him up. He was under a microscope, and it was killing my highly anxious, highly self-conscious boy. He lost his joy for life. There was no more twinkle in his eye, he began to hate learning, and he never smiled or laughed anymore. We pulled him out of school half-way through 1st grade. I would not let them torture my baby anymore. That was 4.5 yrs ago. He still has an aversion to learning and still HATES being corrected. He smiles and laughs now, though. There is SO MUCH more to the story than I can share here, but my point is that ABA is not for every autistic child and that, in some, it can be incredibly damaging.

    • Dr Levinstein says:

      If you want your story to be told, please contact me- I am working on an anthology of Human beings harmed by ABA – really want to get the word out there before more people are tortured.

      • autismit says:

        With respect my son is not being harmed by behavioural analysis, in fact his life has been measurably improved by it. That’s not say there aren’t unethical practitioners out there – there are in every profession unfortunately.

        • Dr Levinstein says:

          I am very glad that your child has not been injured or died. I would not wish this horror on anyone. With numerous paraprofessionals beginning this practice prior to obtaining syndrome and IQ unfortunately there has been large preponderance of PTSD as well as numerous injuries and deaths. In addition, those of us with Autism are taking a stand against the disrespectful nature inherent in the practice,and questioning both the validity and the ethics in it. Hope you will support ABA suvrivors and the families of those people with Autism who have died to tell our stories. It is imperative in order to save lives and to cease neurocentrism.

      • Heather Coppola says:

        My daughter with HFA started ABA at 3. The very first session the therapist blocked my daughter in a chair with her legs. Was two inches from my daughter’s face asking her the same question over and over. My daughter screamed for me to pick her up and I watched nearby as my daughter expressed extreme distress. I have to learn to forgive myself for not throwing the therapist out of our house and getting my daughter away from her. She is now 4 and is still very suspicious of any one who comes into our home. I immediately looked into the Son Rise method. We have used it for a year. We have seen an amazing little girl emerge and now know the only way to teach autistic children is with love and respect. Not only do we let her stim, we stim with her. Try joining your children, it is the best feeling ever. Lots of smiles and laughter.

  29. Dr Levinstein says:

    I am an Asst professor at the University of Michigan with Autism who is working on an anthology of people harmed by ABA either physically or psychologically. My own son died on April 1, 2014 from an ABA related injury. Anyone who would like to tell their story for the anthology, pls contact me at levinst@umflint.edu. I am hoping to out law this pseudo-scientific disrespectful practice in my lifetime

    • I am so very sorry for your loss Dr Levinstein. That is horrific. I wish you the best with your studies, and I hope people do reach out to you with their stories – stories like that need to be heard, considered, and understood.

      • Dr Levinstein says:

        Thanks so much-hoping to hear from people and get this work out before there is continued trauma and additional lives are lost, so that my son’s death and the other ABA related deaths will not be in vain..

    • M.J. says:

      Dr. Levinstein,

      First all, let me say that I sorry for your loss. I can’t even begin to understand what it must be like to lose a child.

      However, there is no form of modern ABA that I am aware of that is likely to cause any significant physical injury let alone a fatal one. I don’t really want to get into a discussion about whether ABA is good or evil but I am curious, possibly in a morbid way, what someone did in the name of ABA that lead to a child dying.

      • Dr Levinstein says:

        My son had a 20 IQ- but as the paraprofessionals who did the ABA were not appropriately trained and hence did not know that there are 250 syndromes that cause Autism and that it is vital to identify this prior to beginning ABA . Thus, they developed the the same tx plan w/ my son as they would with a child with one of the syndromes that have an accompanying normal IQ. As he had a 20 IQ , he was incapable of ever responding to the demands of the ABA trainer, and thus became frustrated’ , hit his head, forming a blood clot and almost lost his eye. The blood clot traveled to is lungs and killed him on April 1, 2014. We attempted to cease all ABA after the initial injuries- but we were too late to save him. This is why I am attempting to save other people’s children- it is too late for my own. Lovas- after attempting to cure “feminized boys” of their gayness via electroshock, then moved on to “curing Autism” after his initial experiments were outlawed. Unfortunately, the large number of parents are unaware of the less than proud or scientific origins of ABA.

        • M.J. says:

          So he died as a result of an injury caused by a SIB? Like I said, I don’t want to get into a long discussion about ABA but, based only on the little you just wrote, it sounds like you are blaming ABA when ABA really isn’t the issue. Maybe his ABA programs could have been designed in a way to reduce frustration or maybe not. But frustration is hardly a unique property of ABA or even an integral part of what ABA is. Yes, ABA can frustrate a child with autism but so can walking through a doorway.

          It sounds like the real issue was the SIBs. As I am sure you know, SIBs can be triggered by any number of things or sometimes by nothing apparent at all. We went through a long person of SIBs with one of my daughters so I actually can relate to what it is like. Frustration did trigger her SIBs but that wasn’t the major trigger nor was it the “cause” of her SIBs. We eventually figured out what was going on and adjust her environment according. During that process the behavior side of ABA was absolutely invaluable in helping to rule out causes and to develop compensating strategies.

          But, god forbid, even if she had caused herself serious and lasting injury I would never blame the trigger but would instead blame the SIBs. Like I said, I don’t want to get into a long discussion and I am only basing my comments on the little you wrote. But what you wrote makes it appear that you have decided to unfairly blame ABA.

          I really am sorry for your loss.

        • Dr Levinstein says:

          I am hopeful that instead of trying to make Autism invisible through ABA or planning to exterminate Human beings with Autism (the present rate of termination of Down Syndrome pregnancies is 92%- the expectation is that the termination rate will be even higher with Human beings with Autism) that we learn to appreciate and respect people with Autism rather than trying to make them look typical. Death is the worst result but there are many levels of suffering related to ABA on the path to death. I am hoping that more people with Autism speak out before it is too late for us……

        • My own son too had many self-injurious behaviours, but none of them emerged from or particularly occurred during the ABA he took part in. We battled each variation at home, figuring out the function of the behaviour and how to address it, where possible, or just finding ways to limit its impact on him otherwise. I did see other children injuring themselves at ABA sessions, but in talking to their parents I was told it was nothing out of the ordinary for the child, and nothing new. I think we do need to be careful about identifying what has lead to such horrendous outcomes as death in such a situation, because if we want to avoid those outcomes happening again, it is vital we target the real cause and not place the blame on something incidental or non-essential. As MJ says, we haven’t heard your full story, so I with-hold any judgment one way or the other, but if these stories are shared then we can see what may have caused the outcome and find ways to help avoid it in the future for other families. To that end, I hope you find the answers you’re seeking.

        • M.J. says:

          Hmmm, based on what you said I am guessing that this is your profile on LinkedIn.

          http://www.linkedin.com/pub/dr-kathleen-%22kelly%22-levinstein-phd-lcsw/95/960/1a9

          The name, current occupation, and autism rhetoric on the profile matches information that you provided and what you are saying. If this is your profile then I would guess that you are about 50 years old. If this is not your profile then there is someone who works at the same place with the same name and the same title.

          If this is you then I have a question for you. If your son died on April 1, 2014, how old was he when he died?

        • Dr Levinstein says:

          He was 22 but he had sustained the numerous injuries from ABA when he was younger,prior to us being successful in ceasing the practice. But, by then the damage was done. He had a blood clot on his brain from one of the injuries, but it was recommended that we not operate as it could kill him immediately. Eventually, the clot traveled to his heart. Unfortunately, as my research continues in watching thousands of ABA sessions and continuing to speak to survivors, I know that ABA is done exactly the same way today- I also authorized care for the nation’s largest insurer for 5 years, so unfortunately, I know that no IQ or syndrome are EVER located prior to tx planning. If this was done, and people with a syndrome with an accompanying normal IQ were given ABA, the injuries would decrease greatly. It would still be a disrespectful practice,but the injuries would at least lessen. The vast majority of injuries are occurring with people with below normal IQ’s

        • M.J. says:

          So the “ABA” related injuries happened more than a decade earlier and you still blame ABA and write things like this?

          “We attempted to cease all ABA after the initial injuries- but we were too late to save him.”

          Also, did the clot hit his lungs or his heart? You said both –

          “The blood clot traveled to is lungs and killed him on April 1, 2014.”

          “Eventually, the clot traveled to his heart. ”

          And you “know” that it was a blot clot caused by a SIB caused by ABA that was the problem?

          “… became frustrated’ , hit his head, forming a blood clot and almost lost his eye. The blood clot traveled to is lungs and killed him”

          I happen to know a thing or two about blot clots, how they form, and what problems they can create. And I know that what you are saying doesn’t make any sense. I’m guessing that you are either confused about the details, which can easily happen in situations like this, or you are doing something else. I’m going to assume that you are just confused about the details.

          Look, if your son died from complications caused by a blot clot you really do have my sympathy. But twisting his death into an anti-ABA talking point? That’s just, well, I don’t even have words to describe what that is.

        • Dr Levinstein says:

          “Twisting his death into an anti-ABA talking point?””.. Are you really serious??? Dr. Fredda Brown’s research (2008) really is true- look no further….. Interesting that my contact info was blacked out so that survivors are unable to contact me with their stories.. What are you so afraid of if you are so sure that ABA is not dangerous?
          Survivors and families, please feel free in spite of this obstruction to contact me at the University of Michigan where my research into ABA abuses is being funded. Also interesting that you have no response to my assertion that there is a void of genetic information given to families prior to the ABA “treatment planning” and the many thousands of hours and decades of ABA” treatment” beginning. Is your silence a verification that it is important for parents to seek this information prior to shelling out millions of dollars , flying through their lifes’ savings and mortgaging and( re- mortgaging) , sometimes losing their homes, because they are told by ABA trainers that they have only one chance for their child to be cured and that they better do whattever it takes before it is too late, preying on their grief and desperation? If parents are informed when their children are 2 that they have below a 40 IQ, they are NOT ABA candidates. (This is why ABA trainers always tell parents that it is “too early” to obtain an IQ. By the time the poor parents find out the IQ ,all their lives savings are gone and their children still do not speak, toilet, etc etc etc- because they never had the innate capacity to do so to begin with).Tragically, there is often then no money to leave the child in a trust as it has been drained through ABA.
          The fact that survivors are speaking out against this multi-billion dollar corporate cottage industry is threatening I am sure. Tremendous amounts of money are being made on the desperation of parents and their lack of genetic information. Instead of allowing parents and Human Beings with Autism this information instead, you choose to attack a parent who has lost her child- very low, but of course expected.
          We will speak however, regardless of how vicious and personal your attacks sink. Let me ask you again, what is your fear in having parents see a Geneticist to find out the syndrome and accompanying IQ of the child prior to beginning ABA? Why is it that parents are never counseled to do this? Who has something to lose by this taking place?

          I have a great deal of research to complete, injury to prevent and lives to save , so my time is valuable . In addition, it is a David and Goliath situation as I am battling- as stated earlier -the multi-billion dollar corporate ABA industry, thus I plan to use my time wisely and continue to research, and teach rather than wasting any further time or energy on this discussion. Parents- see a Geneticist.- an MD with an actual degree prior to handing out any money to paraprofessionals with no degrees . If yoru child has below a 40 IQ consider vestibular activities such as swinging, a trampoline swimming or music therapy. If your child has above a 40 IQ, this is your ethical decision. Trust your gut But please be advised. Autism is a lifelong neurological disorder/difference that will not be cured by ABA any more than ABA was able to “cure” Lesbian and Gay people before its use was outlawed with this population.. Most of all, please read strength based perspectives on Autism,both from degreed professionals, as well as people with Autism (sometimes, as in my case, they overlap). Autism is not a death sentence as Autism Speaks advises that it is. There are many gifts that Autism brings . Please contact Human Beings with Autism through ASAN (Autistic Self Advocacy Network) or this author. We will be happy to share information with you and save you hundreds of thousands of dollars that you will then have available to take care of your child and to leave to them in a special needs trust when you are no longer here,rather than being left penniless,with no progress having been made.

        • autismit says:

          What genetic information are you talking about? and how would an IQ test help? my son would test very low – mainly because he would have no motivation to take part in a test. But through doing ABA it turns out, he’s actually pretty smart. We’d never of known that if we hadn’t done ABA and possibly no one would’ve though it possible for him to learn to communicate with his device. I have a problem with people relying on IQ tests for those who’re nonverbal and autistic – too easy to assume that they are severely intellectually impaired whereas the truth is we may not have figured out the best way of teaching them.

          Personally I don’t care if he never speaks, I just want him to have a method of communication and ABA has been the only way to teach this critical skill. Obviously you’ve experienced some bad ABA practitioners – our providers would never claim to ‘cure’ autism or expect us to mortgage our home. That’s just ridiculous.

        • M.J. says:

          Dr Levinstein,

          Ok, you really just need to stop it. It is one thing to have a difference of opinion about ABA – even though the available evidence supports that it is an effective treatment for autism. It is quite another to do what you are doing. The “my son was killed by ABA” line is misguided at best and quite sick at worst.

          You seem to have the delusion of being attached –

          “you choose to attack a parent who has lost her child- very low, but of course expected.
          We will speak however, regardless of how vicious and personal your attacks sink. ”

          I did not attack you, I questioned what you were saying because it made no sense to me. I asked you to explain what you were saying and your explanation made no sense either. If you feel like you are being attacked when someone points out the inconsistencies in what you are saying, well, that’s your choice.

          But since you can’t even stick to one explanation of what you think happened and keep going on and on about how terrible ABA is I’m starting to doubt your entire story.

          You also seem to have some delusion of persecution –

          “Interesting that my contact info was blacked out so that survivors are unable to contact me with their stories.. What are you so afraid of if you are so sure that ABA is not dangerous?”

          When nothing of the sort is happening. What contact information do you think was blacked out?

          “it is a David and Goliath situation as I am battling- as stated earlier -the multi-billion dollar corporate ABA industry”

          What “multi-billion dollar corporate ABA industry” do you imagine exists? If you think it exists then start naming these massive companies that provide ABA and exist to milk the masses. Because almost every program in my area is run by non-profit organizations that barely manage to make ends meet.

          I said at the outset that I didn’t want to get into a discussion about ABA because I learned a long time ago not to engage the fanatics when they are having a good rant. So no, my silence is not agreeing with you, my silence is an unwillingness to engage with crazy.

          However, lets talk about some of your rant because other people reading this might not recognize how wrong some of what you are saying is.

          You are apparently ignorant of the genetic testing that is routinely done now. You keep going on and on about genetic testing and some nebulous group being “scared” of it but don’t seem to know that genetic testing is commonly done BEFORE the diagnosis and the current guidance from the American Academy of Pediatrics and other similar organizations is to screen for mutations using a microarray or similar method afterwards. It wasn’t common 20 years ago but it certainly is common today. Most of the families I know – at least in the US – are routinely screened for genetic mutations that can lead to the behaviors of autism.

          But none of that has anything to do with ABA. ABA is a specific style of treatment that should be used along side others, such as speech or OT therapy and done in parallel with investigating other possible underlying medical issues. By your logic someone applying for speech therapy should submit a complete genetic profile with the request to approve the therapy? We already have to submit an absurd amount of paper work to the insurance companies to get treatments approved, do we really need to submit genetic testing results as well?

          Besides, the underlying point is invalid. There is no evidence linking any specific mutation to some level of effectiveness of ABA one way or the other. ABA is a teaching technique that can work regardless of what genetic mutation a person has. By your logic full genetic testing should be done before a child enters the school district to make sure that the teaching methods used in the school work for the child.

          I won’t even get into how unreliable IQ tests are when given to a child with autism or how unreliable IQ tests themselves can be when you get to the extremes of the ranges. If someone gives your child an IQ score of below 40 your first step should be to get a second opinion. If you have an IQ test done on a non-verbal or semi-verbal child with autism you shouldn’t put too much faith in the result. It is going to be lower than their “real” IQ because the impairments of autism will get in the way.

          Nor will I get into the lack of evidence surrounding a relationship between effectiveness of ABA and IQ. A successful ABA program should raise the IQ as reported by an IQ test because it should teach the child how to communicate and respond to their environment.

          ABA – when done correctly – is nowhere close to torture. The current mainstream version of ABA will barely even use the word “no” instead favoring redirection, errorless teaching methods, and the like. The current mainstream version will very rarely use restraints and then only the bare minimum that is required. ABA doesn’t deprive a child of food or water.

          In actual fact, instead of whatever you are spouting, ABA is not a violation of the Geneva Convention on torture but instead is one of the few evidence based treatments that has been proven to have to improve the core symptoms of autism.

          it won’t work for every person with autism, there are certainly people out there who don’t use it correctly, and it isn’t the one and only hope to “cure” autism. However, when it works it can make a major difference.

        • Dr Levinstein says:

          As advised earlier- I am quite busy- Last word on the topic- The Geneticist will examine the child or adult with Autism and will test for 3 or 4 likely syndromes- then a blood test occurs to identify syndrome No IQ test needs to take place as the syndrome will give an accurate IQ range. Once the syndrome is identified the accompanying IQ will also be identified and parents will then be able to make a decision as to which route makes the most sense. I am not interested in engaging in your attacks and arguments any further.

        • M.J. says:

          OK, now you are just talking complete and utter nonsense. No blood test can give you “an accurate IQ range”. At the very best it can identify a mutation that might imply a condition and that condition will have a general range of IQ values. But you actually have to test a child to see what exact impact a mutation may have on their IQ.

          And I noticed you went from 250 things to test for to 3 to 4. Care to name the 3 to 4 conditions that you think preclude using ABA? Or are you too busy?

        • Dr Levinstein says:

          What is your degree by the way and do you work for a living? And if by chance you do are you an ABA trainer or do you own an ABA company?. I have already disclosed that I am a PhD researcher with Autism and that I research and teach on abuses of the Autism population at the University of Michigan. What exactly is your affiliation?
          You seem to be a concrete thinker and are not really comprehending the information so I will try once again.. There are 250 syndromes in total- however, testing for each one would be tremendously expensive and is unnecessary. The geneticist instead examines the genitalia and the ears of the child or adult with Autism, which then leads her/.him to be able to hypothesize which 3 or 4 syndromes the child/adult possibly has. In order to save time and money this narrow down allows the testing to be enormously specific When the exact syndrome is identified,the parent will have a highly accurate IQ range and will then know for instance, if their child will develop speech, toilet etc- saving the need for hundreds of hours and millions of dollars in ABA for each child. I will not be responding to future posts of yours- so please feel free to make an appt with the University of Michigan Genetics dept or the Genetics Dept at Mt Sinai and they will be able to answer further questions for you

        • M.J. says:

          Yes, you found me out, I am a shill for the evil ABA corporate borg.

          Not.

          My affiliation is irrelevant although I would stop flaunting your affiliation with the University of Michigan if I were you. I kind of doubt that the University would appreciate you constantly using their name to make what you are saying more credible. Do I need to give your dean, Laura Lein I believe, a call tomorrow and ask her if you have permission to be using the University’s name in connection with your comments?

          I am not “comprehending the information” you are providing because you aren’t actually providing any information. You actually seem to be quite confused about it yourself.

          Is it a blood test to test for 250 syndromes, a blood test for 3-4 syndromes, or examining the child for dysmorphic features? None of these items can give you a “highly accurate IQ range”.

          Nor are these tests “tremendously expensive”. Most of the standard and routine testing is cheaper in time and money then getting in to see a geneticist who is qualified to judge dysmorphic features. And even after the looking for dysmorphic features they are going to run genetic testing and other blood work anyway.

          So no, going to see a geneticist is not the inexpensive option.

          Besides which the vast children don’t have dysmorphic features or rare mutations because these mutations are, in fact, rare. A recent large study of rare mutations in about found mutations that might possibly have some relation to autism in only 3 to 4 percent of cases over a very large study population.

          I think what you are having a problem with is that I actually have a clue about what I am talking about while you seem to be rather confused about the whole topic.

          P.S. I noticed you didn’t name the three or four conditions.

        • I’ve just read through the above discussion. Dr Levinstein, I understand you feeling defensive considering what you’ve been through, but you need to know that the questions being put to you by MJ are ones many others would have asked too, because the views and understanding you’re putting forward about ABA raises a lot of questions and indeed contradictions with what others have experienced and understand about ABA. As an academic, you are surely used to having to explain and clarify yourself, it’s part of what you do for a living. I know your time is precious, we all have endless demands on our time as parents of high needs kids, but please don’t feel that taking the time to answer his questions is a waste of time – I and others are genuinely interested in your responses. Thank you to both you and MJ (and autismIT) for taking the time to engage in this discussion, I for one appreciate it.

  30. Dr Levinstein says:

    Prior to beginning any ABA treatment, see a geneticist and find which of the 250 syndromes that your child has that have caused her/his Autism with accompanying IQ. This will tell you whether your child has the capacity to obey the commands that will be barked at them by the ABA trainer. Even if your child has a 200 IQ- please ask yourself if physical restraint, seclusion, food ,water and sensory deprivation and overstimulation of light, and sound are ethical or whether in fact they meet the Geneva Convention definition of Torture
    Part 4 (c) C- Outrages against personal dignity including cruelty, degradation and humiliation.

    • Kay says:

      I would also like to ask what this “250 syndromes that cause autism” is… I’ve done plenty of Googling, and I’ve taken multiple classes, but this is the first I’m hearing of this – or at least phrased in this way. Do you mean Rett’s Syndrome, classical autism, infantile autism, regressive autism, etc? (None of which are in the new DSM-V anymore…)

      None of those CAUSE autism, so I don’t know if that is what you mean, they’re different TYPES of autism. If this is not what you were referring to, can you point me toward a source for further reading? (Preferably peer-reviewed.) I haven’t found anything on these causes you mention…

  31. Dr Levinstein says:

    The following quote is from one of the ABA survivors in my anthology- “At the Expense of Joy”–again, any survivor wanting to tell your story, please contact me-

    “My biggest concern with ABA is that it is unethical. It is like telling a person in a wheelchair that they can have dinner but that the food is on the 3rd floor and they have to get there to eat. I find it terribly disrespectful. The entire effort is spent trying to make people with Autism look typical, instead of ensuring that we are happy. I do not see the point of forcing us to be normative, other than the discomfort of the typical population. I always remember a Twilight Zone episode where there are only 2 people left on earth and they speak 2 different languages. One of the characters says “It is my job as the most intelligent to learn to speak your language”. I feel this way about neurotypical people. As they have the most power, I think it is their job to learn to speak our language and not the other way around.”

  32. Skye says:

    Hello, how are you. Have you tried having him squeeze his hands? Or having a designated spot where he can happy dance? For example draw a square on the floor where when he is excited he can go there and do his happy dance. Or having a break card where when he hands you the card he can do the happy dance? That way he still can perform this behavior but it is under control and soon it could become under his control? I have worked with children with autism (including aba therapy) ages 2 -24 and I understand completely what you mean by it gets harder as they get older. I had a client whose family did not want to address the issue of him running on the couch because they felt he would outgrow it. He is now a very large 18 year old, still running in the couch. As an ABA therapist I never wanted to take away their current happiness, but I also am constantly looking at their happiness in the future because I know ( just like the parents do) these kiddos have a future. I want to make it the happiest, and most independent future I can.

    • Hi Skye, thanks for your input and suggestions. Yes, we have tried limitations and replacements, neither with much or sustained success. What we have found is working is the fact that he has increasing self-awareness and self-control, and is increasingly able to control the excesses of the behaviour when reminded or required. I doubt the behaviour will ever be “extinguished,” but I don’t think we need to stop it entirely either, just make sure he can be aware and in control enough to adjust it when required. I’m just happy of the progress at this point.

  33. kasprzakoff says:

    I think an update might be of interest here. Last time I posted here, my autistic son was one-year-old, today he is two.

    I do not want to go into questions whether or not ABA is the right approach, do they have or have not conformed results etc. (after all a lot depends on what we consider a result). But ethical questions seem justified from where I now stand. I do not mean semi criminal accusations like ones brought here by Dr Levinstein, but the term “torture” he used seems appropriate in a sense. What I do with my son is probably an eclectic mixture of ABA based Denver Model, Son Rise approach and perhaps some other things.

    What I saw in my son from the very beginning were numerous evidences of some severe perception disorders. I once saw him touching glass door of a fireplace – he burned his fingers heavily, which he did not even notice. The therapists nodded their heads making expert faces and saying: “no deep pain feeling – typical” suggesting some severe neural damage. I learned pretty soon he actually does feel aches of course, but sometimes he simply gets either so much focused on something or – on the contrary – he sort of switches off to avoid some disturbing stimuli (like noise he could not stand then) so effectively, that he simply “pays no attention”, which should be known and understood by neuro-typical persons, who sometimes happen to have similar episodes. Well, at least I have. The latter “switching off” situation is perhaps the best to illustrate “the torture” of some therapeutic strategies. The noise or other stimuli the child wants to cut off happens to be so harmful that the pain of burning may be unnoticed. The noise can hurt more than being burned – this I cannot know of course, but I feel justified to suspect so.

    Now picture an autistic kid doing something typically autistic. Some sort of stereotypic gestures, like flapping hands or something. The strategy then is to try and switch the kid’s attention to something else (Denver Model approach – more “traditional” ABA guy would rather hold the kid saying “no” instead), hitting the drum or doing something else, but most often making noises – they do speak awfully loud at their sessions, do they not? But what if the flapping hands ritual is the one the kid developed as a defense from irritating stimuli or ones that literarily hurt? Imagine having a huge hangover, headaches, dizziness, perhaps fears, cold sweats and the likes and then someone wants to “resurrect” you by playing drums awfully loud – this is perhaps the same, only way more painful.

    To get closer to understanding the therapy’s desired results. My son once had his typically autistic stereotypical ritual. He would press his ear against his raised arm while making unnatural poses with his palm, rotating it slowly in weird sequences. As literature puts it – the gestures have no meaning and no sense whatsoever, they are just another evidence of severe neural damage. Well, it is us who do not catch the meaning – nothing can be said of the meaning to the kid. I could easily say my son would do this dance to cut the noise off. When I tried to hug his ear with my own hand, he would grab it and hold pressing firmly. He would then look straight into my eyes (rare moments then) and we could sit like this for hours. No one would say “unnatural” about this – clearly for just anyone it was a picture of genuine tenderness, a mutual one. Touching an ear was the easiest to understand – perhaps the very touch mattered, perhaps the white noise that can be heard then. The palm dance was harder to explain – probably it was all about physical stimuli from bones and muscles twisted to the extremes. Looking closely though I found three different “choreographies” the kid would then apply – very elaborate ones repeated carefully and gradually developed to be more and more complex. A dance, a genuine piece of arts. I learned to love and admire his “dances”, but someday they vanished. I felt anxious because I knew I could not be sure if the noise became not disturbing, familiar and understandable or the kid just became deaf to it. The latter is probably true.

    Soon afterwards we were at an airport. I was just feeding him; we were looking into each other’s eyes when the alarm siren went off – the noise was sudden and frightening, and unbearably laud. No reaction whatsoever, I could swear he did not hear it at all. Most of all – for me this is how autistic personality develops and not what autism is all about – because it is probably about perceptual disorders that make it hard for the kid to get oriented within the sea of stimuli noise. The rest, including social imparities, are just effects. But the point I am trying to make here is that those two things that could have possibly happened with my son’s “dance” – one that he permanently cut the disturbing noises off and another that he learned to deal with them without this kind of “sick” behavior – are two different kinds of therapy results. The surveys cited here a lot about ABA’s measured effectiveness clearly relate to only one kind of results. This is easy to understand – after all we cannot measure in surveys what we do not understand at all.

    Last year a research was made on an 8-year-old non-speaking autistic girl and her neural reactions were measured to human voice vs. electronic beeps, which was then compared to typical children brain reactions. The results were as could be expected – the weird thing was though this was just the first attempt to look into things like that! And all therapies I hear of – with few exceptions, which are not confirmed and cannot be considered serious – completely ignore that side of the problem. The treatments recommended may then easily turn out counterproductive in the deep neural nature of the problem, even though the behavioral effects may seem satisfactory.

    One day my then one-year-old son watched a cartoon on the computer screen. We did not expose him to such things often – this time we had to calm him down to be able to cut his hair off. The kid would stare at the screen in a typical autistic manner – motionless face, no visible reactions, just staring. It was at the beginning – he would never look at us, he would never react etc. Then an obvious thing crossed my mind – I grabbed a camera and filmed my wife talking, laughing, making faces, jumping into the frame and do other “silly things”. As the cartoon finished I played this video. The reaction was shocking. The kid would look right into his mom eyes, laugh out loud, make faces, clap his hands – as if at last seeing his long no seen mom… Then “the real mom” showed up again, sat down next to the screen (some 10 degrees angular), doing exactly what she did on film – the kid would never even gaze at her… I tried several things – I set up a puppet stage with screens narrowing the kid’s field of view and placed real mom in it, I put a glass shield on it. The only thing that seemed to work somehow was when we get mom’s voice a bit distorted with a cheap set of microphone and loudspeakers.

    I told this story to the therapists suggesting that there may be tricks that aid the kid’s perception. After all I do not care – I may use Skype to talk to the kid, I want to be able to talk at first place… Something causes that the kid does not see us, cannot tell us from the background noise or whatever. If it is easier on the screen, why not use it to just help him? The therapists would say things like “this is not real mom” over and over again, completely ignoring all that I was saying – no other piece of video triggered such reaction: it was mom who triggered them. They would only warn me, the kid would get addicted to the ease of video screen.

    I was right, they were wrong. After a week of watching mom on video – once a day – the kid stared to do the same in real life. I use iPad programming to teach the kid to point at things and it works. The skills do translate to “real world” situations and objects. I wish I knew more about autistic “twisted perception” and I was faster in developing tools like that – experts here in Poland though are not interested at all.

    One of the therapists insisted on teaching the kid to point at things he desired, training him to master the concept of giving things – getting them and giving back. He would repeat “give” over and over again, say “let’s help him a bit”, while forcibly pulling the toy from out of his hand, bending his fingers and so on. Of course I tried to practice at home. There was a double effect. First off the kid learned to smile sort of nervously all the time, because he learned instantly that the smile is required to succeed in getting things. Sort of a smile implant printed at his face. Once he would grab something, he would keep it hysterically, realizing that the fight would soon start again.

    Another effect was on my side. I got convinced that whenever I say: “give” I have to be consistent and I have to force him to give the toy really. It took me several months to quit. My son loved to throw round objects and watch them spin. Well, I am better at spinning things. I would then do it in front of him. He would grab them and run away, I would say: “give” which he would ignore. Then I would catch the thing, he would not let it go, so I would give up, but grab the thing and spin it again each time he would drop it. Finally – within a single day – he decided to let the thing go. I threw it, he grabbed it, ran away and then returned, put it in my hand with visible hesitation, but did not decide to let go. He ran away again, returned and tried to give it again. We did it all day long and finally he learned to give and enjoyed it very much. The next day we practiced “generalizations” – giving other objects as well. It worked – up to the next therapy session.

    I know go to the therapies to learn what they think is important to develop and how they do it. Not to follow their methods. Sometimes I do and sometimes I decide to be much “less friendly” than they are. Something similar to this “dance of joy” described in the original post above. My son would flip the chairs at home – along with lots of other “destruction” he makes. None of the “redirecting attention” things made any sense here. I would just hold him or the chair, or both saying: “no”. I could accept this behavior but I was thinking of what will come next and what when he grows enough to be able to throw such chair through the window perhaps. It took long – over a month – and he never does it now. Sheer behaviorism, but this is what we do with “typical” children as well.

    Orthodoxy is what we, the parents, should avoid. Observe, feel, be on the kid’s side and most of all think hard. Because it is not an easy thing. ABA so far seems the only approach that work. I myself do not accept the results definition. Son Rise seems more convincing, but ABA is definitely worth considering and learning from. This does not mean blind obedience. The sad thing is that most of the therapies (at least here) blindly follow their rules. They are orthodox, alas – well, the more we, parents, should not.

    • M.J. says:

      “we were looking into each other’s eyes when the alarm siren went off – the noise was sudden and frightening, and unbearably laud. No reaction whatsoever, I could swear he did not hear it at all.”

      My twin daughters both did the exact same thing. They simply did not respond to sound consistently to the point that they failed multiple hearing tests. It took a procedure called an ABR to establish the fact that they had a normal ability to hear – at least as far as the pathway from the ear to the brain.

      After the signals hit the brain they apparently were under-sensitive to sound. It wasn’t that they were tuning out the sound but rather that the signal wasn’t strong enough to get noticed.

      You hear a lot of talk about over-sensitivities in autism but there is far less coverage of the flip side, under-sensitivities, that I think are pretty common in autism as well. So when a child with autism doesn’t seem to be responding to their environment you have to ask yourself whether they are tuning out harmful sensory input or just not noticing sensory input that falls below some threshold.

      Just to be clear, I’m not saying or implying that your son is doing that. I’m only mentioning it because it isn’t often that I run across someone who has had the same experience with their child tuning out even extreme sounds.

      I also mention it because my daughters had an underlying biological issue going on that was apparently interfering with their ability to process sound. Once the issue was addressed the results were rather drastic. The point being that it is worth looking closely at behaviors to see if there is some underlying issue that needs to be addressed, not that there is some magic cure for sensory issues. You can do all of the behavioral techniques that you want but you won’t necessarily get too far if there is something else blocking the way.

  34. Dr Levinstein says:

    I want to make sure that everyone is aware- the request for accounts of injury for the anthology of ABA survivors is now full , but I will make sure that each and every one of your stories is told- there will be anthologies Part II and III, and however many are necessary until each story is told. A heartfelt thank you once again to the University of Michigan for their support and funding, as well as for their commitment to Human Beings with Autism and our civil rights, I could not be doing this important work without them and I will be forever grateful for their forward thinking on this topic.

    Just to be clear because ,some bloggers have had a great deal of confusion … there are not 3 or 4 syndromes underlying Autism- the point is that the Geneticist WITH EACH INDIVIDUAL case will identify the 3 or 4 MOST LIKELY syndromes for that individual person and will then test for those in order to avoid having to test for the full range of the 250 syndromes . My own 3 children with Autism had 3 different syndromes and accompanying IQ’s of 181,105 and 20 respectively.They were all given the same ABA tx plan as if they all had the same syndrome.The one with the low IQ as stated previously, sustained numerous injuries and is now deceased.

    I m taking alot of heat from bloggers who only identify themselves by their initials and who refuse to identify their affiliations with ABA, trying to question my right to research and speak about these matters from the Autistic point of view.. As a person with Autism, I am used to a lifetime of demeaning treatment. It appears that allowing ABA survivors to speak for the first time is something that is highly threatening and that questioning the efficacy of the $3,380,000 projected cost of ABA training per Human Being with Autism is also something that raises alot of anxiety and fury. These are questions that I will continue to research, regardless of the anonymous bullying. I am devoting the rest of my life to ensuring that your stories are told and that these questions are able to be asked.
    Thank you sincerely and deeply for those of you who have offered support and enouragement. I will not let you down.

    • M.J. says:

      I want to make sure that everyone is aware – do not listen to what Dr Levinstein is saying about genetics or genetic testing. If you have questions or concerns about what sort of genetic testing you should do you should direct your questions to a professional who is qualified to speak to such matters.

      “My own 3 children with Autism had 3 different syndromes and accompanying IQ’s of 181,105 and 20 respectively.”

      Really, three different syndromes in your children? If all three children have the same biological parents then it would be extremely unlikely that they would each have a unique syndrome that caused autism.

      Then you add in a child with an IQ of 20 and a child with an IQ of 180, the chance of having them both in one family is extremely rare as well.

      Add both of those ideas together and you have a set of circumstances that is absurdly unlikely. I guess it could happen but when combine this with what you said above, well, how do I say this nicely, I don’t think you are being completely honest.

      But start to prove my suspicion wrong, what are the three different syndromes you claim your children have/had?

      “I m taking alot of heat from bloggers who only identify themselves by their initials and who refuse to identify their affiliations with ABA, trying to question my right to research and speak about these matters from the Autistic point of view”

      No, I’m not questioning “your right” to speak about the matters. I’m simply pointing out that some of what you are saying is nonsense. As A&O pointed out, if you are a teacher or professor you should be more than qualified to deal with some basic questioning of your ideas.

      And really, I already told you. I am a part of the evil ABA corporate borg. Now if you excuse me, I need to file a report with my evil ABA masters and await further instructions.

      P.S. That last line is sarcasm just in case it wasn’t clear. You missed the point the first time so I want to make sure that you don’t miss it again.

      P.P.S. I hereby declare that I have no “affiliations with ABA”.

  35. Heather Elise Liner says:

    I so appreciate this article. I am currently trying to decide what approach to take with my 10 year old son. He was just diagnosed with ASD. I have feared there was something “wrong” with him since he was very young. He was always delayed behind his older sisters and had a hard time with fine motor skills. He had a rocking motion he did as a baby, that sometimes involved hitting his head against a wall. Our pediatrician said it would stop by thetime he was 3. It didn’t. I asked the school, maybe we should look at why he acts out all the time, seemed overstimulated, and frequently shut down. I watched him fail for years. They diagnosed him in the school district as dyslexic and ADHD. I knew there was more.

    I pulled Seth from school. We home schooled for 2 years and I began researching. I realized if I wanted a properdiagnosis, I would need to go outside the school and fork over the money. There was a slew of issues he was diagnosed with, but finally I had answers. There was nothing wrong with Seth. It was everyone else’s expectations for him. We all wanted normal behaviors, and chastised fits and unwanted behaviors. Now I live with that guilt.

    I will continue to research and see what routes we decided to use as therapy, but I will tell you the one thing I can teach you. Seth is 10. He is the fourth of 7 kids. The younger kids have picked up on all of his bad behaviors and fits. My 6 year old shuts down exactly as Seth does when doing homework or reading. Mind you, Seth has all 3 learning disabilities and autisim, and a slew of other issues. Payton is an average boy with no learning differences or any spectrum issues. However, if this is what big brother does, why not mimic him? My life has been made more challenging trying to figure out which kids are acting out, due to lack of redirection or knowledge of problems, and which have learned these behaviors. We have an 11 year old and a 12 year old with other issues. (Sensory, hyperthyroidism) and they have their own ways of acting out. But ALL my younger ones imitate Seth. I just encourage all parents out there with younger children not ASD symptomatic, you might want to curb what you can, when you can. I can’t tell you what it is like to go out in public and have 3 rocking children, when only 1 “should be”.

    I commend you for being an awesome mom. I encourage you to meet with your therapists through the district before 6 months. In Texas we can request them at any time, if parent requests. We are back to public school again, but still unsure of if that was best….

  36. Laura Paris says:

    Wow! It took me well over an hour to read this post and all the comments last night. I’m on the search for help with behavior for our HFA (learned that acronym here) 10-year-old son. I also learned here that his happy character which he calls “the Meeper,” must be what qualifies as a “stim,” I think. The Meeper has been around for a few years, has a particular facial expression, dance moves, and a developing language. My son T thinks this character is “soooooo cute.” To me it’s never been particularly cute, but it seems to make him happy so we’ve tolerated it.

    Last week when I chaperoned a group of five boys (!) on a field trip, I learned that T’s peers of spectrum or otherwise nerdy boys actually dislike the Meeper character and are starting to do mean things to get away from him – which T is totally clueless about. Makes me sad. It follows in the wake of losing his first ever seemingly real friend, J, who is a very sweet boy, probably somewhere on the spectrum, but shhhh don’t say that to his parents. J and T shared T’s Minecraft PERSERVERATION, which they talked about incessantly, and acted out on the playground as well. Apparently this year in fourth grade J got tired of T always talking about Minecraft, and since he didn’t know how to deal with it, he started covering his ears when T approached, and running away from him saying that he had rabies. All of the other boys in the geek squad understood that J was trying to get away from T, and joined in, but again, T was clueless about it. Then the school approached J’s parents to have an SST for J, and the parents flipped out and blamed all of J’s school deficiencies on T. Then T was banned from trying to be friends with J.

    Since then (late September), he’s become a totally different person. One that we haven’t seen in about six months – enormous defiance, tantrums, meltdowns, arguing. My theory is that losing his download-about-Minecraft-anchor at school friend was the trigger. But in any case, all of his support team is trying to help by reducing triggers, and helping with self-regulation strategies. Plus we increased his medication.

    However, he still is exhibiting gigantic difficult behavior at home. This past weekend was incredibly exhausting dealing with nonstop arguing and tantrums. Lots of items were destroyed in the house. I’ve been attending “Love and Logic” parenting workshops because they are offering them for free at his school. Some of the techniques apply, some backfire. It’s not designed for neuro-atypicals.

    Whenever things get this bad I wonder if we should get some behaviorist help from someone who is certified/expert/qualified, probably in-home. There is an ABA agency here that has a fairly good reputation and in California private insurance is required to fund it. What we are afraid of is that it will backfire, it will be damaging, it won’t fit our child, or that he’s too old – that it’s too late.

    Most of his therapists over the years have always said his anxiety underlies most of his behavior difficulties. Most of them have advised against ABA, or any system that includes negative consequences, as consequences seem to backfire and make things worse. His long-term psychotherapist since age 3, who is a Floortime teacher to other therapists, says that positive rewards are the way to go. And it has been true that instituting positive reward systems have worked. But it seems like we don’t keep them up. I don’t know why. Perhaps because it’s exhausting? Perhaps because it’s not necessarily our nature to be so highly structured constantly?

    What complicates this is his deeply rooted screen addiction. Not TV, but mainly Minecraft on the computer. He’s incredibly bright and advanced with this game, way beyond his typical peers. He spends time watching YouTube tutorials about this game. It’s a really creative game and I don’t have a problem with it, nor with screen time. It makes him so happy, and it’s relaxing for me. However, it does tend to be the source of a good deal of the arguing. Of course getting off is difficult. The weekends are rough because every minute he is not on the screen he is begging to be on it or watching the clock or rushing through other activities to get back to it. Any minute offscreen is like torture to him. “I’m so bored… What the F am I supposed to do?” And literally, he doesn’t know what to do with himself. He “requires” constant attention from one of us to mirror or help whatever he is doing – which could be composing music, drawing about minecraft, inventing imaginary minecraft realities, all self chosen preferred activities that are very one-sided, yet seem to require an undivided audience. And then suddenly he’s bored. Any activities that we suggest or require are “boring” or “too hard.”

    And then if the computer is slow or glitchy, beware of the tantrum, full of lots of swear words, and a likely meltdown! We do feel lucky that he has an interest in music (something other than Minecraft), he is an accomplished drummer after two years of lessons, and is now starting guitar. But of course he wants to play things that are way too advanced – more meltdowns – and practicing the materials from his lessons, which I just ask for five minutes of, is like pulling teeth. Yet these music lessons are one of his favorite activities, and one that I support for many reasons.

    I’m sorry for the long-winded post. The gist of it is that I’m looking for advice about the difficult behavior. He is definitely HFA with a lot of ADHD and anxiety and big moods, yet behavior systems for typical children don’t seem to apply or work. Plus there’s this screen addiction to navigate, about which the therapists we work with don’t seem to have much to offer in terms of help or advice. I’m open to any input (except from Dr. Levinstein). Oh, at around age 4, his OT suggested in-home ABA training with a man that really helped her with her moderate to high functioning ASD son. We met with the man, but didn’t like him. I wanted to try it anyway because I really wanted to do early intervention, but my husband was against it. I believe he was influenced by his mother, who is a very empathetic child psychologist, who thought it would be bad for his anxiety. They kind of overruled me, and since I wasn’t sure myself, I let them. Since then I have established boundaries with the mother-in-law and she stays out of it. My husband has become an OT himself, and works with physically disabled children. He is much more open to any type of intervention now, but he shares my fears.
    thank you!

    • Kay says:

      Doh! The post ate some of my formatting in the previous version. A&O, can you delete the other one? 😦 I had a few things in brackets, and WordPress didn’t like that much… (It’s how I usually designate options, I won’t do that again, promise!)

      First – you may be correct in the belief that losing his Minecraft-buddy is one cause (possibly of several causes) of the behavior changes – even if T doesn’t quite understand what happened. He sounds highly verbal, is it possible to talk to him about his classmates (including J) and “The Meeper?” It may be that he is aware of the change in J (and his classmates in general), but doesn’t know how to articulate, process, or fix it. Would it be possible to have him talk to a counselor (one that is aware of the social deficits of HF autism) to help him process the school problem and help him gain social strategies (like keeping The Meeper at home) to gain friends? I will preface this post (which quickly became a book… sorry!) with a note that my experience is mainly with children that do not have aggression or defiance behaviors, and are usually lower-functioning. I have seen ABA used with a student that had HFA, but it’s a bit different. (I’ll explain in a bit.)

      As far as ABA and negative consequence systems, this doesn’t necessarily have to be the case. I have observed many different types of systems in place for various students of a variety of ages over the past two years (I observed grades 1, 5, and 6 and in both inclusion & self-contained classrooms for my Master’s), and most of them were positive, rather than putative. (Give a reward when (task) is done.)

      There are a few that are more negative – for example, one boy had a 10 button chart and he would lose a button for whatever infraction they were working on at the time (not doing his schoolwork, running around the room instead of sitting with peers, etc), however, when I asked my professor what they were supposed to do when he ran out of buttons, she said they were actually doing it wrong! It’s supposed to be implemented where instead of having the possibility of losing all of his buttons for running around the room several times during class (thus he couldn’t bring his toy to lunch, for example), they were supposed to take one away for each set amount of time (IE: each minute) that he was running around. Once he was seated and working again, they were supposed to give buttons back. (This avoids the teachers’ problem of “Well, now I’m out of buttons and he’s running around the room again, so… now what?”) What they were doing was more on the punishment side, but the actual system (when used correctly) is sort of both.

      Another girl earned buttons for each 30 seconds of Quiet Mouth (during work-time), and if she had an outburst (usually to avoid work), she just didn’t get the button. She was explicitly told when and why she didn’t get the button, and that she could try again. (After 5 buttons, she would gain a treat.) A different girl would have an 8 minute timer, and if she stopped working, the timer was paused. Once the 8 minutes of working was done, she was allowed to play with a preferred toy for a set amount of time. These again are sort of both positive and putative. Choices were always given (except for the 30 second timer one, because it really is just too short to do this with!), “do you want to keep the timer stopped, or do you want to work and start the timer?” and the students generally started their own timers. In this way, the student feels that he/she has some control over what is going on, in addition to choosing their preferred reward. Most children *want* to do the right thing, so their choices typically reflected that. (This type of redirection apparently works very well with children that have defiance as part of their behaviors – either through AD(H)D or ODD (Oppositional Defiant Disorder), or so says the research that I had read for class last year. Apparently, research has shown that negative and punishing redirection or behavior systems just don’t work for children with anger management deficits.)

      I most DEFINITELY understand not being able to keep up with complex reward systems! One thing that I’m learning in my program now (which is very family-centered, though is a birth – kindergarten program), is that if it doesn’t work for the family, it simply won’t work. Period. For the girl with the 30-second timer (5 buttons on that chart, she got an edible treat), she also had a 2 minute working timer (5 buttons there, and she got to play), and a “quiet body” 10-minute timer – all running simultaneously. And that’s in addition to all the other timers in the room for 3 other kids! In a self-contained classroom, where there was 1 aid per child (plus the teacher), this setup was doable. For a parent that has other responsibilities and possibly other children, this would be *incredibly* difficult.

      I guess this was a long way to say that: there are many different types of systems, not all of them have to be punishment-oriented nor complicated – and if you are not comfortable with the system, there are definitely a multitude of others that can be tried! These are just some systems that I’ve seen used, and there are probably many more that I just haven’t seen yet. (I’m still quite new to the field, as a career-changer.)

      I noted above that ABA is different between students with LFA and HFA – mainly because what I’ve seen were “Discrete Trials” (DT; which is one form of ABA). Each attempt in DT is a “trial” and the student either earns a button or doesn’t. (As an example, setting three cards out and asking the child to “point to cat,” or the 30-second timer. Each attempt, successful or not, is rewarded or corrected, and the child tries again for a set amount of time or times. It is very structured, right down to therapist voice inflection and words used.)

      In the case of the student with HFA that I had observed, it was much less restricted. He read his social story (basically, a story tailored to him – which noted he had to stay with his class and how to ask for things before taking them, etc – useful for both students with LFA or HFA) in the morning and before lining up to leave the classroom and generally earned his reward without a timer or bunch of buttons. More of a “First: do math, then: read book (his preferred activity)” kind of a chart.

      (One side-note thing that may be useful for T, I saw a social story for one child that would get frustrated. It described that “Sometimes I get mad. When I am mad, I can pretend to smell a flower and blow out a candle (a picture-version of take deep breaths). We can practice this now!” This was over-simplified, because it was tailored to her needs. In this case, if he liked Star Wars, you could say “I can breathe like Darth Vader” (I have no idea if there’s a character in Minecraft that “breathes heavily”) or “I can squeeze my squeeze ball, ask mommy for a hug, use my words to say why I am upset, etc.” Then, when the girl started to have a tantrum (she was non-verbal), she was shown a card that had the prompts (“smell a flower,” “blow out a candle,” “smell a flower,” “blow out a candle” printed 5 times. The teacher would show her the card and she would do this until she had calmed down enough to use her device to communicate what was wrong.)

      What the school did (banning the friendship) was incredibly counterproductive – for *both* boys. I think given some time and appropriate social interventions and mediations, the situation may have resolved itself for the better – and both boys would have gained a new skill-set. T will have to learn that not everyone wants to always talk about Minecraft. It is a hard lesson to learn, but it just is. J will have to learn that it is not appropriate (and is hurtful) to run away screaming that a peer “has rabies.” Neither of these things have anything to do with a disability – I see typically developing children do both of these all the time in elementary school – and their teachers generally have to tell them how to handle the situation, using their words. (“What do we say when we don’t want someone touching us right now?” “What do we say when we want a turn?” “What do we say when we don’t want to play a game right now?” In each case, they have been given choices on what they can say in a given situation. Depending on the level of mastery, the teacher may simply prompt them with the question above, or she may prompt them, then give them their (appropriate) choices (which is what I see in my pre-K room right now).) For kids with autism in particular, this has to be explicitly taught, which it doesn’t sound like he is getting right now. If there isn’t anyone at his school that can deal with the emotional/behavioral part of this particular situation, I might suggest going outside of the school if at all possible. (I have no idea if the psychologist can then go to the school to try to work with them on a plan of action regarding the friendship. Particularly if J’s grades have continued to slip without “interference” from T.) This may also be a way to aid with the anxiety – if the psychologist can ferret out what the specific anxieties are, s/he can give him strategies to better deal with them. I’ve read that many children with autism have severe anxieties, but I’m not remembering offhand good ways to actually deal with them.

      In terms of ABA backfiring, some things will, some things won’t. If a behavior system isn’t working, it can be changed. If a therapist isn’t working, they can be (and should be!) replaced. It’s not anything personal towards that particular person – they might be perfectly lovely and competent people. But as I’ve heard from other parents, they often say that they eventually learned: if the person they had currently wasn’t working out (for any reason what-so-ever), they asked the agency to send someone else. I also look at it this way – just because they weren’t a good fit for this particular child, they now have the availability to better benefit a different child.

      I am not sure what you mean by damaging – ABA is not about physical restraint or punishment (and if someone is doing this – get a new person!) unless self-injurious behavior is involved and they need to prevent him from hurting himself. (And even then, it should be done by teaching him to go to a padded place or placing a pillow under his head, etc. Unfortunately, for kids that bite themselves, restraint is kind of the only way through that.) It IS about learning about your son, and tailoring the intervention to him. It SHOULD be about utilizing his strengths to bring up his deficits. Most of the “damaging” stories that I have heard about ABA were from therapies given where the therapist disregarded the needs and strengths of the child, and did whatever fit the needs of the classroom or themselves, instead.

      And it’s never too late or too old. Yes, studies have shown that the earlier the child with autism is put into ABA, the better the outcomes. However, that doesn’t mean that no good comes of it after a certain age!

      Also, I don’t know as much about FloorTime. However, be careful of mixing ABA with other “student-lead” therapies like FloorTime or Son Rise – they can be confusing for the student. For a child with HFA and average / above average intelligence, it might be alright (he might need to know that the expectations are different with his ABA therapist than with his FloorTime therapist), but I know that for a child with LFA and/or below average intelligence, I have seen the combination highly not recommended.

      Lastly, for a meltdown, there is usually a period of “rumbling” (likely the tantrum and swearing). Intervention or redirection can be given during this period – is there a sensory input he enjoys? (Squeezes / hugs, feels (IE: touching or squeezing feathers, stress-balls, stuffed animals (of Minecraft characters?) or furry clothing), listening to music, going in a covered swing (hard to describe – basically a sheet hanging over a pole, like a swinging cave), etc.) During this period of glitchy computer, is it possible to redirect him? “The computer isn’t working right now, we can either (activity one) or (activity two). Which would you prefer?” (This is slightly different than “how about we (fill in the blank)” because the child can opt to respond with “no.” In the other case, “these are your two choices, and no isn’t really one of them.”) For kids with aggression and defiance, from what I’ve read, you never really want to give them the option to choose to refuse to do something – because they will! This might be harder than I make it sound (I haven’t worked with a high functioning child that has severe aggression just yet), but might make the battles a little less severe once he understands that these are his options, and “that’s that.”

      That’s about all I can think of right this second – and I apologize if I am confusing at some points. (I’m in the middle of my doctorate at this point, so between classes, work, and practicum placement, I’m a little less rested than usual right now… lol) If you have questions, I am more than happy to clarify or explain! 🙂

  37. Pingback: Election 2014: 4th District (Hennepin County) Court, Judge 61 | Will Tell Stories For Food

  38. kategladstone says:

    Hmmm … if you regret not having followed the ABA therapist’s recommendation to stop your older son’s “happy dance” even at home, does that now mean that you will have an ABA therapist use ABA to extinguish the behavior in your younger son? Or is ABA something to use only on autistics? (I’m an autistic adult who never had ABA, and who wants to know.)

    • Kate, the post and views you are referring to are over two years old. My sons’ behaviours, my views about those behaviours and my views about ABA have changed somewhat since the writing of this post, so my response to you is beyond the scope of a comment reply. I have been contemplating writing a new ABA / stims issue post, it would take something of that length to give you a meaningful reply, but still thank you for your interest.

  39. Billie says:

    Hi!
    How old were your children when they started ABA therapy? What is the right age to start? Can a child with moderate to severe delay do ABA therapy even thought they have not been diagnosed with autism? I tried researching on the subject but couldn’t find anything. Thanks

  40. Marianne Cooper says:

    My son, too, has autism and ABA therapy. Firstly, do not look back. When you made your choices they were made out of love for you child, and that is never something to regret. As for your son’s self-stimulating “happy dance”, please know that any self- stunning behavior when removed will be replaced by a new self-stimulating behavior. Therefore, if you choose to try and stop the “happy dance” you are going to need to first come up with a new, more socially acceptable behavior that will meet his needs. His needs being, what service does his happy dance provide for him (such as pressure, motion, etc.) that will be met affectivelt with the new more acceptable behavior.

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