Autism is not

Rubik's Cube

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(All of these misunderstandings about autism, are ones I’ve had to personally deal with, most of them in face-to-face conversations. I recently had to deal with a bunch of these over a phone call.)

Autism is not the inability to speak; the fact my son can say words does not mean his diagnosis was wrong. Your cousin’s child is not the prototype of all autism.

Autism is not the inability to make eye contact; the fact that he can now look you in the eyes and smile does not mean he’s recovered from autism.

Autism is not of fixed severity. Some children get more severe, some get less severe, some stay at the same severity. If it doesn’t change or gets worse, it is not proof of bad parenting. If it does get better, it is not proof of good parenting. Just because my son has improved, doesn’t mean I can “fix” your friend’s child too. And while we’re on it…

Autism is not evidence of bad parenting; abuse and neglect doesn’t make a child autistic, and excellent parenting won’t protect your child from autism. How convenient for you that you can pronounce your parenting superior to my own, by virtue merely of my son’s autism. How nice that I could serve that purpose for you today.

Autism is not always accompanied by savant abilities or genius; no my son cannot solve your Rubik’s Cube. No it’s not amusing to think that his autism could be the source of you winning big in the casino.

Autism is not the alternative to catching measles; don’t ask me whether I would have preferred one over the other, as if your question is insightful and thought-provoking. The only thoughts you’re provoking are ones you wouldn’t want me to share.

I know you mean well, I know you care and you only say these things because you’ve heard them somewhere from someone at some time. And you think you might be able to save my son or improve his life, if only I knew what you knew…

But all you’re teaching me is how little you know, and how little you think before you speak. As it turns out…

Autism is not your area of expertise. So please don’t act and speak as if it was.

Thank you.

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20 Responses to Autism is not

  1. nostromo says:

    Thats why I don’t bother saying he has Autism in casual conversation when discussing him with strangers, but say ‘he hasn’t learnt to talk yet’ and other descriptions of what he can and can’t do.

    • Fair call too nostromo. I largely learnt that lesson the hard way. What I didn’t mention in the post though, was the phone call where I recently had to deal with a lot of these claims, was with another parent of a special needs child, who expressly asked me what my son’s condition was. Also, it’s not just strangers who have said these things to me – it includes family, friends and even carers my son has had!

      • nostromo says:

        Another time we were on the ferry and there was a young foreign couple lying on the ground sleeping, this looked nice to my son so he lay on top of them for a cuddle, my words then were “Sorry, he doesn’t know what he’s doing” before picking him up and high-tailing it out of there!

      • lol, that’s very sweet 🙂

  2. Bill says:

    I am endowed with Asperger’s Syndrome.

    The autism community will continue to suffer from the movie “Rain Man” for years to come, a movie which has created really stupid misconceptions about autism. A movie inspired by a man with a congenital defect of the Corpus Callosum, the main nerve connection between the two halves of the brain. Obviously a MAJOR brain connectivity problem; yet only very indirectly related to the actual causes of genetic and fetal trauma autism syndromes this community actually deals with.
    Another gross bit of misinformation out there that I am particularly frustrated with is the notion that we suddenly have an explosion of autism. I look at several generations of my family, and it is obvious that at least for my family’s genes, the tendencies have been around a long time. My children, my siblings, my father (I think), his brothers (I suspect), his father, the engineer (I suspect). Saying that autism has just suddenly appeared from nowhere is an indictment of every parent; it implies you did something wrong to cause autism- you are guilty without a trial and without evidence. Obviously I am guilty of passing on my genes; so be it.
    Most really bad genes don’t get passed on, because the carrier dies or is weakened or doesn’t breed. Obviously the genes which cause autism have been around a long time, and will continue to be around a long time, and the fear of them didn’t stop my son from recently creating my first grandchild.

    • sharon says:

      Bill have you read Roy Grinker’s ‘Unstrange Minds’?

      • Bill says:

        I’ve never heard of it. Are you implying I should read it?
        (I am currently unemployed, but when I am employed, I tend to work 60-80 hour weeks, not counting the ten to twelve hours of commuting, so my reading time budget is slim- given a choice between current events or a book, I usually pick current events. I watch at most only an hour of television a week.)

  3. Aspergirl Maybe says:

    Oh, so frustrating! I am often reminded of the saying about how a man with a hammer thinks every problem is a nail – people love to share what they think they know, even if it doesn’t really apply to the situation.

  4. sharon says:

    Boy aint this the tuth. This really gets me going. Where the hell does anyone who hasnt even read one friggen pamphlet about Autism get the nerve to offer opinions about the vailidty or otherwsie of my sons diagnosis. Or treaments.
    Because Harri is so young and appears to be quite normal to casual observer, I have people in my life questioning his diagnosis. This pisses me off to the point of distraction as it implies I’m some crazy Muchausens-by-proxy mother who is dragging my kid to Drs and Psych’s and spending a fortune on therapy just for the f#$%ing attention. Aaaahhhh. Touched a nerve today.

    • I felt that way so often over the years – that frustration that other people think they know my son better than me, and know his “true” disgnosis better than his developmental pediatrician. It’s a lot better now that he’s at school, because it’s a special needs school it’s a lot harder for them to dismiss the reality of his condition; otherwise why would the government sink such scarce and expensive resources into him. Though of course the decision to send him to such a school in the first place brings its own attacks on me too. You can’t win.

      It’s hard enough raising an autistic child, all this hating from people who go around sharing their unresearched wisdom, makes it all so much harder. Somedays, it really does get to you.

  5. Matty says:

    🙂 !! HELLO, I find here from a link someone click to my website.

    Your post remind me of this http://mattyangel.com/2011/05/14/i-am-not/

    🙂 Things I am not.

  6. Well said! I totally agree and feel your frustration and anger simmering away. I share that with you when faced with “helpful” people’s observations!!
    I’m amazed that the most hurtful comments I’ve ever received about J’s autism have been from family, friends and – staggeringly – another mother of a child with ASD!!
    Great post – thanks for sharing that xx

    • Your comment reminds me of something “Wife of Jack” said on my previous post:

      “Sometimes it’s easier to tell complete strangers the brutal truths about your life. The really hard, prickly stuff that is impossible to express to someone with a vested interest. Complete frankness with strangers has no real danger, there are very few fanatics in our society and you are less likely to come up against someone rude enough to express religious or moral outrage.”

      It’s that “vested interest” that I think often drives our family in particular to speak their mind before thinking it through. I also suspect that family and friends know we will (try to) forgive their out-of-line comments; they don’t realise how much it can hurt and how long it stays with us as parents fighting everyday for the best for our children.

  7. nostromo says:

    I have to say I have never really had negative or judging comments about my son other than from my mother. I get the odd funny wide eyed look at some odd behaviour, but I think people can immediately tell ‘somethings up’ with my child.

    And I think thats an important distinction. I’ve said this before, but perverse as it is I’m pretty sure acceptance and understanding of the childs condition becomes incrementally less likely the more functional the child is. Especially a child that talks.

    An obviously impaired child is more acceptable in a way, people may shy away from them or be scared, but they know its real, its looking them right in the face and they can’t not accept the reality of the situation – they can’t doubt that its real.

    But a child that talks, and looks normal, well then it stands to reason that child must be normal; full speed ahead with the doubting and judgement of the child and parents.

    • Jack (Wife of Jack) says:

      I was told “don’t use that label” by a family member. The shame in that statement was tangible. It made me in one moment experience so much doubt and embarrassment about all the worrying and advocating I had done. It made me feel like I was some sort of attention seeking parent reveling in the reflected focus falling upon my son. If it were only that simple, if I could just sweep it under the rug, he would just learn to talk and everything would be perfectly normal. That is the problem having having a little boy who manages to keep it together (with help) in public, his hurdles and challenges are often quite hidden. “He will learn to talk soon and then everything will be fine” or “But he is only very mild surely?” “Are you sure it’s Autism?” Yes minimizing for our family what is a life changing diagnosis sure is helpful, thanks for that. The only people who can confidently make an assessment about his level of impairment are his parents, we observe every little problem like hawks. So don’t tell me how to feel about it all. “You shouldn’t feel sad he’ll be fine” (less than a month after diagnosis) is not really that helpful or particularly thoughtful on your behalf. I have quickly learned to not expect too much of people. It’s not even on most people’s radar so you have to expect very disappointing attitudes at times. Your allies will quickly reveal themselves an of those you only need a few.

      • Aspergirl Maybe says:

        Another comment that drives me crazy is people asking if he’s “grown out of it” – he has grown and developed, yes, and he has also worked very hard in therapy to learn skills that weren’t coming naturally to him, but no, he hasn’t grown out of it. Ugh!

  8. Great information about the misunderstandings people may have about autism. Thanks for helping to raise awareness.

  9. Sheogorath says:

    From the article: Autism is not the alternative to catching measles; don’t ask me whether I would have preferred one over the other, as if your question is insightful and thought-provoking. The only thoughts you’re provoking are ones you wouldn’t want me to share.
    Whenever someone mentions MMR as a cause for Autism to my mum, she always states the fact that I got my Autism from her (she’s an Aspie) and she never had that jab. Then she adds that she’d rather have an Autistic son than a dead one anyway.

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