Why I’ve stopped using autism as an apology or explanation to strangers

My seven year-old son is autistic. This is a piece of information I once nervously shared with absolute strangers when they watched and judged me while I struggled with my son; I felt I had to let them know that my son wasn’t a bad boy and I wasn’t a bad mother, it was autism causing what they were seeing. Without the information about his diagnosis, I wasn’t sure how I was meant to explain what they were seeing.

By exfordy

Now, when my son does or says unusual things that make people look at him or me as if there’s something wrong with us, I no longer use autism to explain or apologise. Not because autism is no longer key to understanding my son and his actions. The reasons I no longer reveal this vital piece of information – even when it would make his and my life easier at the time – are three-fold. Before I get to them, I want to give two examples where I recently actively chose to bite my lip and not say what I once would have said.

The first was when my son was in a bouncy castle. He was having a great time, when a much younger child, of about two or three years old, hopped into the castle too (under the less-than-watchful eye of his parent). The younger child roughly attached himself to my son, and everywhere my son went this toddler kept throwing himself at my boy. At times he tried to sit on my son’s head and ride on his back. I wanted to tell the other parent that their son was being too rough and to please be more gentle because my son has special needs and struggles to know what to do and how to defend himself in these situations. Instead I simply asked my son if he was OK, and he said he was fine, and that “the boy likes me!” (which the little boy clearly did). My son was enjoying the rough-and-tumble, even if it was awkward and looked painful at times, so I let him cope with it himself.

Eventually it got too much but it was my son who called a stop to it by shaking the boy off and saying it was enough, and leaving the situation, at which point the other parent finally told his own son to be more gentle.

A second example was today at the hairdressers. The hairdresser was asking my son what Santa got him. My son said Santa was pretend. This woman gave me a look like I was some sort of devil for allowing him to believe Santa wasn’t real; she didn’t ask if my son was a different religion, she didn’t ask if he’d ever believed in Santa or wanted Santa to be real, she simply assumed a seven-year old boy must believe in Santa. I wanted to tell her he was autistic, that he was very literal, that pretending Santa was real is a confusing notion for him and he’s quite happy knowing the truth; he needs truths. Instead I kept my mouth shut and quietly judged her back for being so presumptuous.

Because I hadn’t intervened, she went back to talking to my son about whether he’d got any presents for Christmas (now that she’d got past the shock of hearing that Santa hadn’t got him any), and he happily told her he did get lots of presents. Later during the haircut she commented on how very quiet he was being and said her own seven-year old son talks non-stop. My son was being quiet because he finds haircuts a bit upsetting and was focusing on trying to be calm, but I didn’t explain, I just left it to see what my son would do. He looked to me for reassurance that being quiet was OK, I just gave him a big thumbs up and he smiled and continued in his focused silence.

Later on the way home he asked me if it was OK that he had been quiet. I told him he had been very well-behaved and it was OK to be quiet when people aren’t asking you questions, if you want to be. That not everyone has to talk all the time at the hairdressers. He was happy with that answer.

Returning then to the three reasons that I no longer use autism to explain or justify my son to strangers (some of the reasons should be clear by this point).

First, my son is old enough now that he needs to start finding ways to engage with others who don’t understand him and who can’t quite figure him out. He has adequate language and social skills to interact and problem-solve. Both children and adults still find him unusual and confusing, but I no longer step in to ease the path for him, so he is having to find new ways to make himself understood and welcomed. I don’t intervene unless he is in real physical or psychological danger (though I’d intervene in such situations whether he was autistic or not, that’s plain good parenting).

The world is not always going to embrace him, and I’m not always going to be there to force them to; I would much rather he got used to what people are going to say and do while I watch and listen from a safe distance, than when I’m not there at all to help him understand what went right (or what went wrong) after the interactions.

Secondly, I no longer accept the close-minded restricted views of “normal” that the average stranger carries around with them. Just because my son says or does the “wrong” thing, doesn’t mean he deserves stares and I deserve criticisms; in fact, as I see it, their quick and ignorant judgment of my family is something they should be utterly embarrassed by. They are the ones at fault for expecting everyone to conform to their idea of ideal interactions. I do not owe them an explanation or apology for my son’s words and behaviours (again, unless he was physically or psychologically attacking other people, but this is (a) simply not the sort of behaviour my son engages in, and (b) if it was, my interference with such behaviour and words would again be in accord with basic good parenting, so it should surely go without say).

If I tell them my son has autism, they may show more tolerance and acceptance for this “special instance,” but they should be showing that higher tolerance and acceptance regardless. If I give them this reason at this time to be better people, then they may think they otherwise had good reason to be so judgemental. Disability and difference are around them all the time, they aren’t owed labels and explanations in order to allow them to otherwise continue being jerks. I will not pretend that their attitudes and expectations were perfectly fine but for my son’s autism.

Thirdly, saying “he has autism” only ever raised more questions than answers, it rarely functioned well as an actual explanation. The vast majority of people don’t know what autism means for a child, and those who do know something about it almost always only know the myths and extreme stereotypes (like violent non-verbal or miraculous savant). So what’s the point in telling them something that means nothing to them? A fair few even took their children away from my son after I said he had autism, like it was a disease or a warning of some kind.

These reasons of mine for not using autism to explain or apologise, only apply to strangers. People who my son regularly interacts with, such as teachers and family members, are better off knowing about autism, and have the opportunity and interest to learn more about what it means, and what it means for my son.

Maybe years from now I will feel differently again; maybe I’ll make a t-shirt proudly telling every stranger that I’m a mother of an autistic child. But for now, this is the right thing, for him and for me.

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24 Responses to Why I’ve stopped using autism as an apology or explanation to strangers

  1. nzpam says:

    Yes, this sounds very similar to our journey. I enjoyed this post – a lot. Thanks.

  2. Sunshine says:

    I love this!! I think it must be wonderful to witness your son handle those situations so well. Gotta say, the Santa one seems pretty strange to me- isn’t 7 about the age that children often start questioning Santa, anyway? Anyway, not that it matters. You’re right; we need to stop catering to the assumptions of others. I have heard people say before “Oh, I’m sorry, I didn’t know!” in response to finding out someone they were judging like 5 seconds ago has some sort of disability. Um, yes, exactly. You didn’t know, and you made assumptions, anyway. Why should we even dignify that with an “excuse”?

    I also agree that this is an approach for strangers. I find being open with friends and family has been so beneficial for all of us. but strangers can just go on thinking I’m a clueless mom- they have no idea!

  3. I really enjoyed reading this post and I agree with you completely. I am a teacher of autistic students and see far too many parents making things much worse for their children b making excuses for them. You are absolutely right and it was great to read that he dealt with the situations so well. Children constantly surprise me with their capabilities, despite the assumptions other put upon them!

    • I’m a little wary of the conflation between the explanations and apologies I was talking about, with your use of the word “excuses”: those are very different ideas. But maybe that’s not what you meant, it’s so easy to be misunderstood in written communications. Regardless, I get the gist of what you’re saying, and I’m glad you liked the post ๐Ÿ™‚

  4. Amir ali says:

    Nice post, I agree that telling people that your son has autism , can raise more questions than answers. The problem is my son is often very loud, in the hairdresser situation he would have been loud and silly if he was nervous. In the bouncy castle situation he may have resorted to violence, not using autism merely makes us look like we’re really badly behaved and I don’t care!

    • I totally understand what you’re saying, which is why I said that one of the main reasons I no longer tell people is because he now has adequate (if unusual) language and social skills to find ways to handle these situations. When he was more severe it was a different type of situation; it wasn’t so much difference as it was something scary and confusing (though not dangerous) to others. My attitudes and views have definitely shifted alongside the severity of my son’s autism. I am always very aware of that, always very aware of the journey we have been on with my son and how his changing autism has changed some of my attitudes to autism. I appreciate your comment Amir ali.

  5. Wife of Jack says:

    We have been easing off on the compulsory explanation of diagnosis lately as well. Perhaps it arrives with a more confident and relaxed attitude from ourselves as parents. A superficial interaction with my son will not reveal anything needing an explanation. He “passes” pretty well. Of course our trained eyes spot instantly the squealing, excited arm flapping or the sensory exploration that seems more appropriate for a younger child. In addition to the nappy always threatening to poke above shorts revealed by too short T-shirts as he never stops growing. Despite what is obvious to us, his parents, with strangers he gets along pretty well with appropriate but delayed language. During his early years daily explanations and discussions about modifications from normal parenting were very useful. Despite this I intend to ask his new school next year to keep this information as discrete as possible. It is no longer necessary for other parents to know unless I think it would help my son. In a school environment the fewer parents that know of his differences will help to emphasize his similarities to other children. He is perhaps a very naive and sheltered child, but I do adore his innocence and protect it like a lioness!!

  6. Ben was always so keyed into my attitude. To be laid back about his reality and handling of it can only be helpful. It IS other people’s problem. I will never forget the old biddy poking me in the back at church because he was squirming. Ben was 3 years old and it was a special mass which included the handicapped. Must really suck to be her with that attitude…

  7. Zoe says:

    I agree completely with this post, it is so beautifully written. I have a son with a learning disability which, when he was younger, displayed itself with tantrums and sensory overload meltdowns. I felt like I needed to explain to people who were staring and making judgements about him and my parenting but now my son’s behaviour is so obviously different from most children his age I feel less inclined to explain to total strangers why he is different. It’s none of their business. I am proud that he can now handle a shopping centre without a meltdown and I don’t want him to hear me telling people he has a disability because only society disables him, at home he is just our son, who learns at his own speed, no disability about it! If only society would grow up and acknowledge that we are all different and accept difference ๐Ÿ™‚

  8. Gail says:

    Hi,

    I have a 3 yr old who has severe autism. Developmentally, he is about a year old. He is non-verbal, not toilet trained and not interested in anything but visually stimming on objects close to his eye, while screaming loudly at the same time (vocal stim).

    I was thrilled to note that your son now speaks, and is able to communicate very well with you indeed. It gives me hope that my own child will eventually get there, even though it all seems highly unlikely and very discouraging right now.

    Please, could you tell me what therapies you did in order to help his language develop ? I think part of my son’s problems is his frustration at not being able to communicate with us or with others in order to get his needs met or his problems addressed. I truly believe that he would behave much better if he could only talk.

    ANY help or advise that you could give me in this regard would be very helpful to you. We are about to start him on VB/ABA, and on bio-med interventions, too.

    Thanks !

    Gail

    • Hi Gail,

      The son you’re describing at three years old is very similar to the son I had at three years old, so I do understand your frustration and despair. I will answer your question as best I can.

      I also strongly believe that language / effective communication, is the key to reducing much of the severity of autism. I had this instinct backed up by the charts I kept tracking my son’s progress each month, which showed that each time he had a leap in communication ability, there was a later corresponding betterment in behavioural issues; the two were clearly linked, and the link makes sense on multiple levels.

      So then what gave our son the ability to communicate. For our family, PECS was central, that’s the Picture Exchange Communication System. It is a step-by-step system that aids a child to link ideas with pictures, and build on that towards even being able to express a sentence using pictures. We had a speech therapist support us to implement the system appropriately and correctly.

      Once our son started to communicate more, his frustration (and ours) greatly reduced, tantrums and violence and upset were gradually replaced with words. Eventually he would be able to use it to also let us know about his sensory concerns in a more direct sense than we had previously.

      On that point, I found the insights of an occupational therapist were invaluable. She was able to help us make sense of our son’s sensory issues and gave us ideas for how to reduce his anxiety but at the same time encouraging him to try new things.

      For all this though, I have to say a sad truth. From what I understand reading recent studies and reviews of the literature, it is a small group of autistic individuals who shift from being as severe as my son was, to the reasonably high functioning boy he has become. My son’s progress has even shocked his developmental pediatrician, who never thought his future could be how it has turned out (and she lectures in this area as well as practices in it). There does not appear to be one consistent factor that predicts the huge improvements in terms of therapies or interventions, but it has been noted that (as you already know) finding a way to communicate was key.

      So I say this in summary: Use the guidance of the experts in your son’s life and throw yourself into making those therapies work. Stick to the known and tested therapies, avoid quakery and untested approaches even if the anecdotes pull you in, because those untested and unproven approaches can make a child worse or damage the child in other ways that you then have to fix. Sometimes it will all feel like two steps forward and three steps back while you’re doing interventions, but we always found things got a lot worse just when they were about to get better, as if our son had to process the new information and techniques we had given him before he could effectively use them, so don’t lose heart. And keep track of any and all improvements in a diary so you can see what’s working and what’s not; use a tracker like ATEC to map progress. One last thing: Don’t try to solve every single problem at once, it will confuse your son and drive you crazy; choose what matters most right now (maybe two or three aims) and work on that.

      I don’t know if all or some of that helps. I can only otherwise wish you the best, and I encourage you to let me know if there is anything else I could help you with. You are not alone. It is not hopeless.

      • Gail says:

        Hi, thank you so much for your response.

        Could you tell me if you tried ABA, and, if so, what “flavor” (ESDM / DTT / Verbal Behavior etc) and how many hours per week ? We are having trouble with PECS because he does not have the focus or the attention to use it appropriately. It is a struggle but we will slog on…

        Also, how did you keep your child occupied after school, during vacations etc

        Thanks !

      • We did do ABA, but I have no idea what type it was. It was only once a week through a preschool group for autistic children, run by a woman who had been trained in the States in ABA and was training people here too. ABA was very useful for teaching us techniques that we expanded into the rest of his daily life, and he had a few very special breakthroughs in that group. He went from a screaming, lashing out miserable child, to one who eventually started going on the playground equipment there and miraculously even trying to join in sing-along action songs (which was just huge). Each of the therapies we tried with our son just gave us more tools and insights, ABA was just one of many useful therapies, not the main one for us.

        The problem you’re describing for getting going on PECS was the same we faced, which is why the speech therapist spent months building our son’s ability to maintain joint attention. It seemed tedious and pointless at the time – we were desperate and impatient for real help and real results – but creating basic joint attention skills to begin with is absolutely vital. After that he could respond to the start of the PECS program, and it took off from there.

        We were never able to put our son into after school or vacation care since he had such high needs and was so difficult to handle. I hate to say it, but I just did it all myself. It was exhausting, it was soul-destroying at times, but I learnt that other people couldn’t handle him and often made his problems worse, so I felt I had no other options at the time. I did occassionally get in someone to help by playing with him while I was in the home too, so I could help them deal with any meltdowns (that gave a break of sorts but I was always on-call of course, so not quite the break I emotionally and phsyically needed). The meaningful breaks only started once he had a dedicated carer with him at his kindergarten, and then of course school is a huge break each day. I just kept hanging in there until the school years, but that must still feel so far away for you now. Is your son in any care away from you, giving you a break, or does he go to any sort of kindergarten?

  9. Gail says:

    Hi, yes, he goes to a preschool 5 days a week, 5 hours a day, so yep, I get a BIG BREAK. It helps me prepare our meals, clean the house, take a breath… LOL ๐Ÿ™‚

    Thing is, it is through the local public school, and they are VERY, VERY, VERY NEGATIVE about his prognosis. I know he has severe developmental delays, it is not that I am in denial, but they basically told me he has “intellectual disability” (the New Age, politically correct term for good, old fashioned mental retardation) and it bothers me a LOT. Part of it is that they claim that he got a lot of early intervention services through our county, and it still didn’t get him “up to speed”. That is the most ridiculous thing I have ever heard because it was not as intensive as it seems on paper. The staff were incompetent and the provider has had multiple issues filed against them, but whatever.

    My son has excellent gross motor skills and is getting better at adaptive living skills. The real problem is with fine motor (which we work on) and language (the lack thereof !)

    He gets the concept of PECS, but what he does is randomly reach for pictures in order to “co,,indicate”. If I respond by giving him whatever the picture represents, he then grabs another picture and hands it to me and keeps going until he gets the “right response” from me. So, it is as if he is training me, not the other way around. Our speech therapist told us to not entertain more than 2 responses, and if he gets it wrong the second time, he does not get another shot for another 5 minutes. This, she says, should motivate to look at the pictures and make a conscious choice as opposed to randomly throwing PECS at me. Sounds good in theory but good luck dealing with the tantrum that comes from the “5 minute break”.

    He is also a HUGE visual slimmer and that is all he really wants to all day long – unless he is at a playground. But it is physically impossible to keep him at a playground 24/7. So, I try to redirect him, but I really dont know how to engage him all the time, so he does end up stimming for the better

    TBH, I was in an AWFUL position until last month. December, I made my peace with my situation and I told myself that there is NO rush. He will speak when he is ready, he wll function as much as he can, and he will fulfil whatever destiny he is given to fulfil … I need to accept it and cope as best as I can because that is the only way I can keep my sanity. I am not giving up on him, and still work with him, but the despair has sort of softened since realizing that his progress will come in HIS time, not mine.

    His language is my biggest fear. He has been heard to use a total of 6 words APPROPRIATELY
    Many times over the past year, I was fooled into thinking that he was starting to use words… And, just as I open the champagne bottle to celebrate, he stops and goes back to being mute. It is this start-and-stop constantly that confuses his entire team. We just don’t know why he just won’t keep adding words to his vocabulary and keep using words… Million dollar questions, all.

    Autism is the most exhausting, depressing disability out there… WHEN my son makes it out of this (because I know he eventually WILL get there, it just takes him MORE time than most kids), I am going to celebrate and never complain about ANYTHING in my life ever again. Autism has taught me how GOOD my life was before it entered the picture.

    • It’s a hard journey, no denying that. It comes with no promises, no miracle cures, you just do the best you can each day and keep going cause we love our kids to bits and see the potential that others barely glimpse.

  10. Aaron says:

    Well writtent – I enjoyed this. The anecdote about the hairdresser resonated with me. And it made my a day a little more bouyant.

  11. Very well written. Thank you :). Come check us out at autism sparkles ๐Ÿ™‚

  12. I’m currently trying my absolute hardest to stop doing the same thing. When my daughter was first diagnosed I used those words as a tool to make myself feel better in uncomfortable situations – they were always only uncomfortable because of other peoples reactions, NEVER because of my daughter’s actions. I too have stopped using these words and the instances when I do have dwindled immensely. Sometimes I find myself going to say those three words that used to “save me” from the social awkwardness of the situation but I now think better of it. Thank you so much for your words! I’m so happy to see this in writing!!

  13. Pingback: Not telling strangers | lovenlearning

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