“Rethinking Autism” and Demonizing Parents of Autistic Children

Mother and Child by Mary Cassatt

Image by cliff1066™ via Flickr

There’s a video doing the rounds in the autism blogging community, which is getting a lot of positive feedback. The video is by “Rethinking Autism”. You can find the video here. I thought the video content was ill-thought out, unhelpful, and potentially quite damaging to the well-being of autistic children and their families. Clearly I was in the significant minority though, so I decided to give the organisation the benefit of the doubt, and looked up their web-page. After that I was no longer unsure about the message the video was trying to give: It wasn’t a mistake that it was demonizing the parents of autistic children, that was its aim.

They unequivocally state as much on their web-page: “Up to this point, celebrities and parents of autistic children have dominated the media with their miracle cures and unsubstantiated theories on causation. This exploits autistic people, their family members and the public.” You may notice the inherent contradiction already. The statement that parents are exploiting the families of autistic children, is a non-sequitur. That is the least of the problems, though it does hint at how ill-thought out their project is. I did note that on another video they did, they start quoting the same paragraph I took the sentence from above, and removed the reference to “parents of autistic children” being part of the problem. Yet it is clear from both their website and subsequent videos that this is still at the heart of their message. Perhaps – at least for that earlier video – they realised that demonizing the very people they are trying to get their message to, is pointless and ridiculous.

If the aim of this organisation, and their videos, is to stop the violence done to autistic children’s bodies and minds, by unsubstantiated treatments, then they have my full support. Indeed they expressly state they are against using chelation, special diets, and restraints. Surely though, the attack should be made on the use of those methods by the people making money off and promoting it – the “professionals”. Parents get sucked in by the marketing and the false promises, they are being effectively being lied to and stolen from. They are victims too (though lesser victims than their children of course). Why further victimise them?

I am going to quote from the main video doing the rounds, and explain the problems with the message it sends. I will use some editing of the text, but I will not add any words, or subtract anything important (for example, when I quote about the mother thinking of chelation, I’m not going to include the bit about it being cheaper in Mexico). The setting is a parental help-group, with a bunch of mothers and fathers sitting in a circle:

  • A Mother: “So, we’re thinking about chelation”
  • Adult autistic woman (who speaks each time but goes “unheard”): “Can’t you die from that?”

No concerns from me about the dialogue yet, adult autistic woman is correct.

  • A Father: “He threw a fit, started screaming in the barber shop, it was so embarrassing.”
  • Adult autistic woman: “Why did you let the barber touch him without asking?”

OK, what just happened there? The parents of autistic children are primarily concerned about the embarrassment, not the fit? At this point it’s looking like a parody of how parents react and what parents worry about. I’ve never met a parent who complained about the “embarrassment”, they worry about their child, and yes they get concerned about everyone judging them – because other people do stare and make ignorant comments. The word “embarrassed” distorts and trivialises the entire experience from the parenting perspective.

And her response, what the hell? “Why did you let the barber touch him without asking?” In my experience (surely I’m not the only parent having these experiences), the parents of autistic children go out of their way to do everything thinkable to make such experiences positive for their children. They use rewards, they use social stories, they may even just cut their child’s hair at home for the first four years of their life – small pieces of hair at a time, across many days – to avoid the child getting upset *cough*. I’m reminded of the child I saw at the special needs school I visited who had an entire class session dedicated just to preparing him for his first ever hair-cut, because his parents have never been able to get him a barber. Never. Because they knew how upset it made him. That is the typical parent of an autistic child, not someone who forces their child to a hairdresser then complains about the embarrassment.

  • A Mother: “I feel like she’s trapped somewhere in there.”
  • Adult autistic woman: “But she’s right there in front of you.”

Parents want to understand their child. They want to know and understand their thoughts, their feelings, their desires, their dislikes, etc. Whenever I’ve heard a parent say their child seems trapped inside, they’re referring to the frustration of not being able to access those thoughts and feelings, not (as this video dialogue suggests) that the child they really want to have is nowhere to be seen.

  • A Father: “So sad how we can’t have birthday parties, she’s too afraid”
  • Adult autistic woman: “Who are the parties for, you, or her?”

Oh for god’s sake. The parental concern is about the child’s anxiety reaction to change, crowds, noise etc. The adult autistic woman’s reaction is again to belittle those concerns and cast them as if it’s a selfish response. If this was a genuine help group, the follow-up would be to give the father methods to help the child adjust to such situations, because life is (after all) full of such situations (crowds, noise, change) and he needs to learn how to help his daughter cope with that. Yes, the daughter might turn out to prefer not to have parties, and that’s fine. But if there’s a chance to provide her with the skills to cope with – and even enjoy – parties, then there is nothing wrong with trying to achieve that. Plenty of parents stop trying to give their autistic children parties, or change the types of parties, for their children. In fact, many parents isolate themselves and stop throwing any parties – even for themselves – because their children can’t cope with the situation.

  • A Father: “What about school, he just doesn’t get it!”
  • Adult autistic woman: “Accept that he learns differently.”

Parents know this, and the vast majority of parents fight tooth and nail for their children in the education system, because they understand this so very well. That agonizing choice of whether to send your child to mainstream school with (never enough) support, or a special needs school, or even to homeschool them. Parents of autistic children don’t just dump them in a class then complain about how the child doesn’t get it! They spend their time and energy trying to make sure the school gets it. Again, instead of attacking and casting the parent as the ignorant selfish one, look for the real problem here – the education system. (Just like the attack about the false treatments should be laid at the feet first and foremost of the practitioners, not the parents who are just doing the best they can.)

  • A Mother: “He never tells me that he loves me…”
  • Adult austistic woman: “Every time he touches you he’s saying that he loves you.”

Well that sounds nice doesn’t it. But considering that many autistic children struggle to even touch people, let along hug or kiss their parents, and considering how often the only “touch” you get as a parent from a low-functioning autistic child, is a hit or a bite, it’s a bit too simplistic (and wrong) to say every touch is a sign of love.

Maybe that’s the problem here – I am speaking from the perspective of a parent trying to raise a not-high-functioning autistic child. But I do not presume to speak for high functioning autistic people or their parents. I don’t even presume to speak for all parents of low-functioning autistic children, I wouldn’t be so bold, ignorant or arrogant. I present my experiences, my perceptions, and try to inform people about what it’s like living with an autistic family member. The video though does not distinguish between high versus low functioning autistic people, in fact it openly suggests it’s speaking for those who cannot speak for themselves (which classically incorproates those who are “low functioning”).

The therapies I have provided to my child, the therapies so many parents try with their children, are not at their heart about denial or change of autism and the child’s essence, but about providing their child with the ability – the freedom – to choose what they want from their life. Giving them the skills they need to get a job, should they so choose. To talk, should they so choose. And if – after everything is said and done – the child becomes an adult who wants to accept, embrace and retain autism as the centre of who they are, that “without autism, there would be no me” (a statement made at about the 2 minute mark on their video here), then so be it. That is their choice as a free thinking, capable adult. But it is up to us as parents to help them reach that point where they can make that decision. Just because my son loves maths, doesn’t mean I’m not going to make sure he also learns writing and art and biology. In every part of his life, I am giving him options. I am giving him freedom. In so doing, I am not depriving or destroying him. Quite the opposite.

It is so important to remember that supporting a parent of an autistic child, is to support their child too. These parents are stressed and under-resourced, desperately trying to learn about autism, and to help their child. Like many such parents, I’ve been through hell trying to help my son find joy and pleasure in his life, instead of miserably crying, afraid of anything new or different, and unable to communicate his ideas and thoughts. The therapies we’ve used with him, have worked, and he has become a happy and thriving little boy. The therapies have not stiffled or hurt him. He still faces significant challenges because of his autism, and yes I would wipe out every single one of those challenges if I could. I would wipe out his anxiety, I would advance his speech, I would make him as physically able in both fine and gross motor skills as his peers (and better if I could). I would not pay any price to achieve those things though, as I have said in numerous previous posts where I have spoken out against unscientific and disproven therapies (such as here, and here). There is nothing implicit in wanting the most and best for your child, that leads a parent to using dangerous and unproven treatments.

What parents need is information; not to be called selfish, and be belittled and demonized for their concerns. It’s fantastic that adult autistic people want to be part of the discussion about what is best for autistic children, but being autistic doesn’t make them experts on what is best for children, and neither does not being autistic mean a parent doesn’t know what is best for their child. I will always be interested in autistic view-points, but autistic people are always still individuals, with their own politics and preferences and desires. There is no “one” autistic voice, and even if there was such a thing, I doubt it would go around telling parents how evil and pointless it is to try to give your child every option and advantage in this world. It would surely say “thank you for sacrificing so much for me, but please make sure those sacrifices are based on good humane science”. That is a message worth hearing.

***

If you disagree with what I have written in this post, then I openly and honestly invite you to say so. I am passionate about this topic, but not so much that my mind cannot be changed with good arguments and insights. I invite you to show me the errors I have made, and defend this video and organisation if you so wish, but do it respectfully and politely, and I will reply in the same manner.

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11 Responses to “Rethinking Autism” and Demonizing Parents of Autistic Children

  1. nostromo says:

    There is often an assumption in the Autistic community..a fear almost, that parents are trying to make their children neurotypical in behaviour. That may be true in a small minority but it would be a small minority.
    For most of us its about quality of life, and future life.

    I have these arguments on WP a bit, ABA is another favourite; often misunderstood.

  2. KWombles says:

    “That is their choice as a free thinking, capable adult. But it is up to us as parents to help them reach that point where they can make that decision. Just because my son loves maths, doesn’t mean I’m not going to make sure he also learns writing and art and biology. In every part of his life, I am giving him options. I am giving him freedom. In so doing, I am not depriving or destroying him. Quite the opposite.”

    Yes! Your post is well thought out.

    We need to avoid caricatures and sweeping generalizations and seek ways to achieve common goals of helping autistic individuals learn the skills they need to have in order to successfully navigate the world while working to make society more aware of and accepting of diversity. Acceptance of diversity doesn’t mean anarchy, though, which I think a small number of folks tend to think it does: no need to follow rules, to accommodate to societal rules.

    Accommodation is a two way street, something too many forget.

  3. mamafog says:

    I think I’m on the fence regarding this. I agree with what you have written. It does seem like they are blaming parents. But I think that there is value in understanding their viewpoint. It is very possible that what we see as helping our child, or even venting about our concerns is perceived by others differently than we intended. People with autism, even high functioning autism very likely have first hand experience with many of the things we are doing with our kids, even if they are lower functioning. Most people, even without autism tend to process what we hear and read based on our own memories.

    I agree with you that some of the comments attributed to parents, don’t seem like something we would actually say. Perhaps it is more a representation of how the author/s of this website hears what others are saying.

    Perhaps when this person with autism hears her mother say “I feel like she’s trapped in there somewhere.” The person with autism really does not get it, maybe they wonder just who their mother is looking for, and feel sad that their own mother seems to think she is not there. I don’t mean to discount the mother’s feelings, I’m just trying to understand how they are perceived. I think this website is giving us some clues about how some people think.

    I think the message on that site could be presented differently, but I will admit that it made me think. I do appreciate your thoughtful and rational post.

    • And I appreciate your comment mamafog, and I think you’re quite right: The video and web-site do give an insight to how parent’s comments might be misunderstood, particularly by the very people the comments are about. I agree too that it’s vitally important to hear the voices of people with autism – I absolutely want to hear what they have to say. But when what they have to say is about parenting motives, attitudes and activities, and I can see good reason to disagree as such a parent, I too will put forward my voice (but you and I have no disagreement there either).

  4. Thank you for your thoughtful post. I would also like to thank you for pointing out a flaw in my message. My message is that “certain” celebrities and “some” parents are responsible for exploiting their children. I will make sure to change it on the site.

    Also, I got most of my caricatures from the parents over at AgeofAutism.com and other sites like it.

    Sincerely, Dana

    • Hi Dana,

      I am no fan of Age of Autism and their attitudes and misinformation re autism, so I completely understand your reaction to what you have seen and read there.

      I appreciate that you took the time to read what I had to say, and have given it further thought.

      I wish you all the best with improving the futures of children like my son.

      Sincerely,

      Linda (Autism & Oughtisms)

  5. I see the benefit of what the director of the video is trying to unearth, at least for some parents. It is the value of letting go of old dreams and respecting your child for who they are and what they offer without using the “neurotypical” measuring stick by which to compare. However my experience is that Linda (article author) is right on the money when it comes to most autism parents that I know.

    I agonize over when and if and how to help my child with supplementation or alternative medicine. Ive spent years pouring over research, talking with Dr.s and parents, reading medical journals from all over the world and take great care in making medical and nutritional decisions regarding my child. Almost every other autism parent that I know does the same.

    Most of us go to great lengths to avoid public tantrums, but not because of how “embarrassed” we will be, but most importantly because of how seeing our child struggle in terror or frustration breaks our hearts in a million pieces. Secondly, I may not actually be able to physically manage to get him to a safer, quieter place without help (and no one in public is going to help, understandably) and while I’m trying to manage and/or waiting for my husband or someone else that I have called, its a very real possibility of the police getting involved. A CPS investigation can be easier to catch than a cold when you have a child with autism that can occasionally struggle publicly. I’ve helped another mother with getting her child into a car seat while others stand by and write down licence plate information while talking on their cell phones to whom I can only guess. (Note: I’m sure many observers have good intentions but don’t understand what is happening. More public service education messages would help) And lastly, I am aware of and concerned for the other patrons of any public establishment and their ability to enjoy the experience without having to listen to or watch a child scream for minutes and minutes on end. It is low on my list of priorities, but my sense of civility requires that I try to be as considerate of others as possible while first trying to help my child. This should in no way be mistaken as “embarrassment” but rather as somewhat apologetic in nature.

    I have changed the type of parties that we have for our son so that it is what he will enjoy them more but I also understand that, especially in the beginning, letting go of the dreams we’ve had of what our child’s life would look like is difficult. Perhaps this is what the video director was trying to get across. Although we had to cut out large birthday parties for a couple of years, we kept exposing him to them little by little after a while and now (age 6) he is able to attend an entire party. I don’t presume to know or suggest what other families should or should not try regarding experiences that seem to be challenging to their children. I feel that parents intuition is best.

    It seems that some of the message and perhaps the entire idea of the celebration of neurodiversity may be divided along high vs low “functioning” lines or more specifically, severity of detrimental behaviors. Although I believe that in most cases there is little if any real difference in cognitive or intellectual functioning between what is considered high or low functioning, there is a real difference in the ways each of these types of families function and the level of community assimilation they can assume.

    In one of these videos, the person with autism states something to the effect of “If you take away my autism you take away who I am.” That seems appropriate for someone who accepts or possibly delights in the uniqueness and talents that autism has given them. However, I believe that if you asked (and were able to hear from) the person with autism who spends 15 hours a day banging their head against a wall or scratching their skin to shreds or who cant find peace unless they are biting themselves or those around them, they certainly might consider the eradication of their autism a gift as well as a deliverance from physical pain, social humiliation and psychological torture. Similarly, the parents of such a child might be willing to go to different lengths (within reason) to try medical treatments or supplemental therapies in the same way that a parent with a child suffering from a severe medical condition might try an experimental treatment. If history (or even the bible) has taught us anything, its that most parents will go to almost any length to heal their child’s severe suffering.

    If I were trying to reach parents in the autism community the LAST thing that I would do is judge a parent for trying to ease their child’s suffering, or for being concerned about the potential consequences of public outings, or for wishing that their child could even acknowledge that the parent exists much less saying I love you.

    Sometimes I can become so entrenched in the many things that I do for my sons autism that I don’t always pay as much attention to the person he is at that moment. It is always nice to have that reminder; something that helps us to enjoy our kids for what they are is priceless and welcome. However, this video feels like an admonishment to parents who are quite possibly the most vulnerable parents in the world when it comes to self doubt, self admonishment, feelings of worthiness and confidence that we are everything that our child needs. It felt like a kick in the stomach, then the self doubt “Maybe I am ______ and doing _____” etc. It is too easy for us to feel that we’ve screwed up yet again and that we are a failure of epic proportions as a parent when in reality, we are accomplishing super-human feats every single day.

    Yes we could use reminders to slow down and enjoy our children for what they offer. However, there needs to be intelligent sensitivity executed when dealing with parents of children with such a broad range of behaviors and challenges, especially when we may already be sufficiently “beaten up” by some in our community, government, family and even ourselves. Lets try this again.

    • Wow. Excellent, well-thought out, well expressed comment. You’ve made quite a few very important points there.

      Thank you for taking the time to share your perspective and experiences.

      • You are so welcome. I am so appreciative of your courage and insight on this commercial. Its not always easy to be the one with the unpopular opinion. I was still trying to make heads or tails of my own thoughts on this until I read your post on it and then my thoughts solidified and I could put them into words. Thank you for that.

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