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I am autistic, leave me alone
This blog has recently considered the ethics of deaf parents who want to engineer a deaf child. The politics of identity is surely one step in the logical chain of existential philosophy, where only we define our reality and only we can act out in authenticity living in the identity we construct. This blog has also considered what it means to call oneself a man when one is a woman. The sweeping revolution has now moved on to another hot subject of the day: autism. There is a movement, it seems, for autism to be accepted as normal. I know very little about it, but the posture of the following passage is quite provocative.
The first person to articulate the autism-rights position, Jim Sinclair, has produced only a few page-long essays. In his seminal invective, “Don’t Mourn for Us,” from 1993, he wrote, “It is not possible to separate the autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.’ Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”
This is a pretty cogent little excerpt that might be a good defense for why parents shouldn’t drug their children with Lithium to keep them in line, but I’m not sure about autism. If you have autism in your family, or if you’re concerned about the excesses of identity politics, you might enjoy this long treatment of the issue from New York Magazine.
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Jim Sinclair’s position is analogous to saying that parents who wish that their children disabled by cerebral palsy could walk, and who work diligently with physical therapy to help them walk, do not love their children as they are.
Ridiculous! And even more important, damaging to the millions of children impaired by autism, who need all the the help they can get to overcome this monster that can doom them to a lonely, unhappy life dependent on others for basic necessities.
Although autistic, Jim Sinclair and the other autism activists are obviously quite high-functioning, unlike many afflicted with autism, whose experiences would be much less positive than theirs. Thus, they cannot presume to speak for all autistic individuals. In my experiences as a physician and with my own autistic 6 year old son, I strongly believe that autism is to be battled, like cerebral palsy would be, rather than embraced as just another manifestation of the glorious differences found among individuals of the human race.
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Yesterday, I read about a five year old autistic boy who was “voted off” the kindergarten class because he was autistic. (It was on Fox news.) I don’t know if it’s still there, but it was a horrible thing for a teacher to do to a student. She said she was trying to change his behavior, but she asked the others kids to say what they didn’t like about him and had them vote on whether he should stay in the class.
They aren’t “normal,” and to deny that is just unrealistic. This is wishful thinking. We all have weaknesses to deal with, some more obvious than others, and while autism is a hard one, they will have to find a way to cope. If I had a child with muscular dystrophy, I couldn’t separate the child from that either. Why wouldn’t a parent want a cure? It doesn’t mean the child is unloved.
What we can do is teach people (evidently adults as well as children) about the problem and make them aware that these people understand what’s going on around them and that they have feelings. We have to teach respect.
(And that teacher needs to be fired.)
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They aren’t “normal,”
No one is. Normality is a myth.
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NJLawyer–I read that too. Can’t imagine how the teacher was so insensitive as to do that publicly.
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Spinoza, I don’t agree with you on that. To deny “normal,” is a typical liberal response. It’s what liberals often use to excuse their bad behavior.
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I wonder what aspects of his behavior Jim Sinclair has been criticized for. (I’m not taking time right now to read what HSK say is a “long treatment.”) Just the title of this post makes me think of the tendency of many people with autism to shun contact with other people. If Jim Sinclair feels that people think he should want to be with people more, I can identify with his feeling that they don’t want him to be the person he is.
I don’t have autism, but I am an extreme introvert. I got the message, growing up, that being introverted was a defect. No doubt I had character defects as well that caused me to prefer my own company to that of my peers, but being an introvert is a basic aspect of my personality that isn’t going away. If people treat it as something that needs a cure (and I have been in churches that seemed to treat it that way, except they would have said repentance rather than cure), I am going to feel that people don’t want me as a person. I was so relieved, as an adult, to find out that being an introvert is just as “normal” – but less common – as being an extrovert.
That’s not to say autism is normal. I know two boys who have autism who would much prefer not to. One of them is my younger son, and the other is the son of my small group leader at church. Both would be considered “high-functioning,” but both have a lot of trouble dealing with unexpected change, other kids not doing things the way they think they should be done, and not being able to do something they’re trying hard to do. (Not that other kids don’t struggle with those things also, but these boys, 2nd and 4th or 5th grade, react in ways typical of much younger children.)
The other boy has a medical bracelet that explains he has autism. I heard that he once tried to get rid of the bracelet, thinking that if it didn’t show he had autism that would get rid of the autism itself. I only told my own son a few months ago about the autism, trying to help him understand both this other boy’s behavior, and his own behavior that makes kids or other adults get upset with him – or that gets him so upset with himself. All in all I think he and the other kids deal pretty well with it – he tends to cry easily when he is frustrated, but they don’t make fun of him and he doesn’t give up right away and quit. But I know he would much prefer not to get so upset to begin with. (The teachers and I work on that with him, and in the past year such episodes have decreased.)
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Regarding “normal” –
Most behavior exist on some kind of continuum, such as from extreme introvert to extreme extrovert, from low intelligence to high intelligence, etc. For each one, some fairly broad area around the middle is generally considered “normal.” That’s how most people are.
But because we’re complex beings, with so many characteristics, hardly anyone is going to fit in the “normal” range for every characteristic. As long as a person can function reasonably well in society, that’s OK. I happen to be towards the high end on intelligence, but very low in athletic ability – and, as I mentioned above, an extreme introvert. All of those things can make it difficult for me to fit in, and if it weren’t for some good friends along the way I could easily be a real social misfit – or have committed suicide by now.
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I would agree with you, Pauline, that normal is a continuum, but there’s that place in the middle of the range where the vast majority of people function. We are very similar, except that I’ve learned to be more extroverted in public (law school rewired the brain, but that’s what it took). Today no one would call me shy, but it’s still my nature.
From your own description of autism and what your boys go through, it is evident that they know they aren’t in that middle “normal” range. This Mr. Sinclair seems to be unable to accept that he’s different, so he wants to redefine “normal” to include that which is not. It’s okay to be different. It’s not wise to deny it.
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The problem is that we tend to think of normal as good or superior and abnormal as bad or inferior.
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Pauline,
I know what you mean. My husband is very extroverted and so are all of my three kids. I’m the only introvert in my family. Recently, the mother of one of my daughter’s gymnastics teammates was talking to my husband and me, and somehow it came up in the conversation that all our kids are very social and extroverted. Her response was something to the effect of how wonderful that is, as if extrovert tendencies are self-evidently superior to introvert tendencies. She, herself, is very outgoing, friendly and extroverted, and as I said, so is my husband, and both have qualities related to their extroverted nature that are definitely to be admired. It clearly didn’t occur to either one of them, though, that there are other valuable human qualities that are more prominent in introverts. I didn’t say anything at the time, though, because even though something didn’t sit right with me about the exchange, it took me about a week before it dawned on me that they were, quite unwittingly, insulting me. When it did hit me, it surprised me to realize how much I’d unconsciously adopted the same mindset.
In regard to the OP, I agree with you as well. Autism has a wide spectrum, and for high-functioning, highly intelligent autistic people (like the author of that quote), their autistic tendencies, although limiting in some senses, are also responsible for some amazing qualities and achievements. Speculation that Einstein may have had Asperger’s seems quite plausible, and maybe even probable to me.
NJLawyer,
I don’t see in that quote that Jim Sinclair is saying that autism is “normal.” I understand him more to be saying that “normal” isn’t necessarily preferable, and I think, as Christians, we can affirm that. It’s often the most radical Christians whom we most admire and want to emulate. Exceptional is, by definition, not normal, and often those with the most exceptional problems develop the most exceptional character.
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Kyle beat me to the punch. Amen, Kyle.
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I agree with you Kyle. Sinclair should appreciate that he is different. Why would he deny that? Why can’t he embrace it? Who knows what he can accomplish by being different? So, he’s different. So what?
You wrote: “The problem is that we tend to think of normal as good or superior and abnormal as bad or inferior.” I tend to think of “normal” as “average.” It’s middle of the road. Just look at the continuum or the bell curve, however you want to describe it.
Just read his last sentence: “This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.””
That’s quite an indictment to lay on one’s parents. He’s telling parents that they don’t love their children and they want them to CEASE TO BE! I don’t agree with him. I think these are the words of someone who hasn’t come to terms with being different. For a parent’s perspective, reread Post No. 1.
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Just read his last sentence: “This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.””
That’s quite an indictment to lay on one’s parents. He’s telling parents that they don’t love their children and they want them to CEASE TO BE! I don’t agree with him. I think these are the words of someone who hasn’t come to terms with being different.
I don’t agree with him either when it comes to his interpretation of the sentiments of the parents of autistic children, and perhaps this unnuanced thinking is a consequence of his autism. But when he talks about how certain ways of speaking make him feel, he’s not wrong. He knows what he feels.
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Reg. “normal”–
Normal implies that there is a certain norm, a “way things are supposed to be.”
There is no “way things are supposed to be” as far as personality or temperment (excluding the results of the Fall, of course), so I’ll go with Spinoza and say “normal” should not be applied to human beings.
“Typical” is perhaps better, since it implies a relation to the majority. “Usual” would also work.
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Has anyone read the story about a teacher who encouraged students to “vote out” a mentally handicapped boy from the classroom? I came across it on http://detentionslip.org.
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I am a parent who has prayed for years for my autistic son to be healed. Yet I have often wondered just how strange and different it would be for him to suddenly not have autism.
Autism is different from other medical disorders, in that it does profoundly affect personality and emotions. However, my son does face alot of struggles because of his autism. He still struggles just to say one word.
So I do pray for him to be healed, just as I do that he’ll also be healed of his epilepsy and encephalic cyst. However, I hug him frequently every day and tell him that he’s my boy and I love him. I hope if he ever gets to the stage that he can understand that I pray for him to be healed, that it’s because I only want to see him free of some of his hardships; and that no matter what I love him completely just as he is.
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Joanneb,
I will pray for you and your son. Your story touches my heart. There is nothing so painful as a child who has struggles which you describe in your post. GOD bless you all.
How old is your little boy? I don’t mean to ask questions you don’t want to answer, please ignore my questions if you feel you don’t want to answer. I am a very private person, who rarely gives out personal information, so I understand if you feel the same way.
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Ahh, JoanneB…thank you for posting your story. What a mommy’s heart you have!!!
My son is borderline. What does that mean? He doesn’t quite “get” the social interaction thing as quickly as others. We have only now (at four) moved on past major pronoun reversal FOR EVERYTHING and the typical tantrums over botched routine have subsided. He still has inappropriate responses to things (socially) but we are blessed that it isn’t as bad as it could be. He loves “crushing” his mommy (hugging) and it a happy boy.
But, to deny the problem causes confusion to so many parents struggling to make sense of a heartbreaking situation as is. What, are they now not to try dietary changes and holistic treatments in hope? Should they never hope?
About normal: without digressing into the realm of semantics, the “word” is functional and should be. Although we should be clear about defining and avoid misinterpretations. I think words like “typical” are helpful, but, I do fear that (like someone posted above) liberals too often dismiss normative behavior in order to condone sin.
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Of course, he knows what he feels. But his last line — “strangers you can love will move in behind our faces” — indicates to me that he doesn’t think his parents loved him. And for all I know, maybe they didn’t. Maybe they couldn’t handle autism. But you can’t legislate love. When I read a post like JoanneB’s, or HSMomof3Blessings’s, the perspective of two parents, we hear the other side of the story. They very clearly love their children. From those posts, I conclude that Jim Sinclair’s view of things, whether imposed on him by virtue of his autism or not, may be somewhat skewed.
Jim Sinclair is not alone in feeling “mom and dad didn’t love me,” but that’s not a problem about autism “rights.” It may be real, it may be imagined, but it’s not a “rights” question. What legislation would you pass to accommodate his problem? Pass a law that parents must love their autistic children? What remedy would you give him?
If I were the parent of the child who was “voted off” the kindergarten class, I’d be raising holy you know what. That was beyond insensitive. There was a real opportunity to teach the other little kids to be kind and loving, and what did the teacher do? You can frame a remedy for that. But how do you frame a remedy for Jim Sinclair’s view.
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Victoria, thanks for caring,
My son is 8. In some ways his autism isn’t as bad as most, he loves to be touched. He loves hugs and finds them very comforting. He has bonded really well with his Dad, something alot of autistics miss out on. He has a great visual memory, his understanding is really increasing.
However, partly due to his encephalic cyst, his ability to speak is severely limited. I think I’d be glad if he could just get to the stage of echolalia, or pronoun reversal. He has never used a pronoun, mostly he says nouns, with a few verbs. He can read and spell a couple of hundred words already.
I am blessed to be able to homeschool him, all of his ‘classmates’ love and understand him.
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