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Should we cure autism? asks the September 11th Guardian. Writer James Randerson notes that autism researcher Simon Baron-Cohen brought the “cure question” up today at the British Association Festival of Science:
He believes the condition should be recognised as an atypical form of development, like left handedness, but not cured.
That goes against many well-funded and high-profile groups who want to encourage research that will ultimately lead to ways of preventing or treating autism. Their names – Cure Autism Now [which is now affiliated with Autism Speaks] and Defeat Autism Now – speak for themselves.
The Cure Question—the “c” word—-has come up regularly here, in a post about what qualities does the parent of an autistic child need and in an earlier post about acceptance vs. cure, from which I quote:
…. proponents of “curing” autism seek a cure in the hope of turning an autistic child into some idealized—non-autistic, not-disabled child—”normal” child.
Acceptance of autism is, indeed, the opposite. It involves acknowledging, appreciating, and seeking to learn one’s autistic, disabled, “different” child on her or his own terms. I accept my son Charlie’s autism even as I acknowledge the specific challenges (in his learning and otherwise) and also, even more, seek to nurture his special strengths. Acceptance, I think, is often understood as a much more passive stance to assume than the active, aggressive, “fighting autism” attitude implied in curing, defeating, etc. autism. But acceptance can be active too, and even more active than attempts to cure one’s child of autism: Acceptance involves a parent, a person, changing her or his own ways of thinking, acting and being in the interest of what is best for an autistic person. To me, helping Charlie requires changing myself to live in an autistic world, as much as I can.
After ten years of life with Charlie, I tend more and more to think that “should we cure autism?” is not a question that will lead us to the answers we and autistic persons most need, and that is not, indeed, the right question. I wonder if, when people talk about wanting to “cure autism,” they are echoing how we talk about other kinds of diseases and illnesses, such as cancer or muscular dystrophy. It is certainly possible to help my son better cope with his neurological “wiring” and his difficulties using language to communicate and his tendency towards obsessive thinking. But helping him deal with these is not at all tantamount “curing” Charlie from autism, which manifests itself in how he thinks, in how he perceives the world and its sensory information. Teaching Charlie to talk means that we have given him the tools to communicate the way he thinks, and this is something different from many people (and something I look forward to learning more about every day).
Just in the past week, two people on two separate occasions have assumed that Charlie is not autistic: One was an autism mother who went sailing with us, another was a teacher at Charlie’s school who, on seeing Jim walking Charlie from the parking lot, smiled and called for Charlie to enter one door; Jim was taking Charlie to a different door where his teacher and aides were waiting, and said words to the effect that Charlie was in a special ed class.
I think it is something about Charlie’s self-possession and the way he holds his body that leads people to think he is not autistic—-or maybe a better way to think about this is that it is time to change and expand our ideas of what “disabled” and “autistic” mean, and to put aside the Cure Question as beside the point. Charlie walks likes Charlie.
thank you, mel—-it’s a message that more need to be daily reminded up.
To all, to All and To All–my love,
I had a really good and interesting time reading the back and forth commentaries, and I would like to thank and love you all for your bold words. One thing that I have noticed is that this is a cruel, humorous world, that, if it can’t throw you for a loop one way it will hit you in another.
The most noticible children are those who “suffer” from severe problems. But those with mild autism, for the most part, can go unnoticed. My son behaves quite often as any ten year old child does, and he gets picked on at school. My best friend, who has the typical 11 year old boy, says he gets picked on at school. There are things to be done to hinder these antics, but the best thing to do is just to help your child cope with society…by love, and Love, and more LOVE. Because pretty soon, “we autistics” are going to out number them!
To me, autism brings about a different, and exciting view of the world, one most people don’t see until they have had an autistic child lead them to it. I don’t see a need to cure ASD, but a need to cure others from their bigotry.
There probably should be a cure for the concept of normality, or at least it should be expanded to fit more people.
1387 days ago
[...] decided not to post the comment (it was on this post, about the cure question); I do have it saved, along with some others of its ilk. As more than a few autism bloggers and [...]
WOW Cliff! just wow. and thank you.
I understand, athina, your position (as much as one can be said to understand the position of another), and have a deep and full respect for those in your position. I don’t remember if you said how old he was (a year out from diagnosis, if I’m thinking straight), but I know it is in that early phase. So let me tell you a little personal story.
I have a classic autism diagnosis. My mom (god bless her) left her job temporarily to take me to UCLA to the Lovass program, directed by Lovass and those directly under him. In basic words, I got the best teaching a kid could hope to have, and I will never forget it.
It wasn’t so much that I have a light autism diagnosis but that I got the best training that I have learned to act nearly normal. People are surprised (if not shocked) to learn I have an autism diagnosis, especially of the variety which I have. In fact, considering I have a letter saying I no longer present as autistic is even complicating to the point.
So it could be said that I could skate over much of the predjudice by choice. I could completely ignore the diagnosis, get a regular job, work up the ladder, and nobody would know. It would be hard, but possible. But I wouldn’t consider it for a second.
Why? It’s because it puts my mind in context with those around me in a way that people can understand. I simply understand and think about the world differently. No amount of teaching will change that, ever.
Here’s a prime example; I’m a non-medium thinker (or at least a very unclear medium). Autistics are known, on some occasion, to attach to different mediums and perceive the world differently for them. Temple Grandin, for example, wrote about her thoughts through a visual means (in pictures), and others have had thoughts in mathematical concepts.
I have none of the above. I used to think I thought in colors, but really colors are the simple association to bundles of thoughts. I have no “voice in my head” of any kind. In fact, I’d find such a presence disturbing. I mean, do you all ever get away from that? It’d be way too noisy for me.
No, my thoughts are completely my own, without the baggage of language or visuals or mathematics. They’re completely within a different construct of my own (the nature of which I have yet to discern). I couldn’t really identify anything in the physical world that really replicates them, though (very interestingly) the closet I’ve come is a feeling similar to electrical tension (as opposed to muscular tension) in the face.
This difference is so interwoven with my thoughts and understanding of the world that I would never consider myself the same person without it (and my experiences would be very different). And it’s directly related to my autism. I think differently, and uniquely, for it. And I would walk to hell and back to keep it, again and again, because I value it so very much.
Aside from the fact I would find a voice in my thoughts deeply disturbing (or a picture, or a number), it’s allowed a completely different outlook on my life. My thoughts, my understandings, and experiences, in the past and forever forward, are affected deeply by this. It’s not so much that it creates me in a “pure” or “sacred” state as it puts me in a very natural position with the world around me, without having to be above it for the medium of my thoughts. I don’t have to create a separate “mind” to define my existence (for my thoughts could be directly physical, though it’s hard to tell). I also have a grip on myself that exists outside of language, and the removal is something that I appreciate (though I can’t really convey why in language, because it’s outside of language).
Is it easy or simplistic in terms of living my life? Not really. My dad jokes that English was my second language, the first being god-knows-what. I have real issues translating all of my thoughts into language (especially where the syntax is lacking). And they have tendencies that are stylistically odd, but true to my thoughts; I find that the simple active (such as in thinks) doesn’t work well when describing mental qualities, where a participle with the verb “to be” does (such as is thinking). Needless to say, this sounds odd to people who don’t think this way.
This is only one of numerous differences. My senses, for example, aren’t distorted, but different, if not more open to the world (to the detriment of the part of my mind that has to process everything that I sense). And having an active, thought-based connection to people is helpful when understanding social understood people tend to assume. The list goes on, it’s all because of autism, and it’s all part of me.
I suspect that this is true of your son, as well. His existence will be colored by autism. It’s largely choice to consider that a good thing or a bad thing, but I’ve come around to liking the differences at a basic level.
It’s true that my mental differences are somewhat at odds with the world I live in. My mind is not something people easily relate to, but that doesn’t necessarily devalue it. It’s a practical concern, but I wouldn’t put practical concerns over a unique and interesting life anytime.
I would also say that I have the complete faith that your son is more than ready for the challenges the world will present him. It’s clear (just through the language you use) that you are going to be a great, compassionate parent, and a true asset in his life, and I think he will learn and grow with the experience. Is it easy? No. Is it rewarding? Looking back at much of it, I can say so with certainty.
Oh, and the very fact that it’s a digital hug makes it easy enough to include you as far away as Greece. It makes the experience all the more rewarding, anyway.
Cliff
Dan,
Thank you for your flattering comment. It also took me some time to choose tha words but in the end it really depicted the ideas in my mind.
Cliff,
It’s true that life is not meant to be easy and it’s the challenges we face that make it interesting and even worth living it. I also agree that a person can use difficulties to improve himself/herself and acquire the essential strength to cope with life in general. Don’t you agree though, that it is unfair for autistic people to be judged and mis-judged for things that are beyond their control? I think you know what I’m talking about. One can benefit from the challenges s/he faces when s/he is capable of dealing with them (and I don’t mean the easy way). When circumstances occur that are too much for a person to cope with, the effect is exactly the opposite. And that goes for non-autistic people, too. I want you to know that I admire you for the person you managed to be and I hope that when my son grows up will be able to see his autism as a part of himself, like you do. I say that only because I know that he has to live with autism. But, I still think, that if there was a way for him to get rid of autism, I would be willing to spent all the money I have and everything I possess, even give up my own life, in order for him to achieve that.
Finally, I hope this “digital hug”, when it occurs, will be large enough to include me in another and far away part of the world, Greece.
Only one thing to add to what Cliff just wrote. Jerks will always find something to tease others for. I grew up in a place and time where my mongoloid (rather than caucasoid) features stood out, and were cause for taunting from the day I started school, into my late 20′s. During that time, I did not know of any non-european lineage, and was often angry that I was being teased for something I was not.
Not to fault my parents, but they had not set me up to feel ok with my looks, so I was certain I was really an ugly gook (pardon me Kristina, but you may know the sting of that as well). Now the whole wide world is much closer. Plus, I learned that the Mongols mixed with Poles. I can better accept that I indeed have oriental “blood”, but I still wish that I had been given a solid base of self-esteem.
That’s my main objective for my sons. Know they are different, yet beautiful, smart and lovable. So, when that day comes, and someone tries to build himself up, by knocking them down, they won’t take it as truth. That’s my theory anyway. I’m sure I’ll be looking for that cyber hug nonetheless.
It is true that a child is not autism, and autism is not a child. But I would say that autism is part of a person, much as a tendency for caring for children or a particular desire for better in the world.
I understand the desire to eliminate all the obstacles in one’s life. But, really, though the phrasing could be better, humans really do grow and thrive on conflict. Let’s take someone earning a PhD (extend this to any activity that you feel is personal to you, as you desire). Did the student work hard for the PhD. Yes (hopefully, anyway). Might the student, in the moment, wish there was less work. Yes. But, looking back, would the person find all that work important in valuing the outcome (the PhD or whatever you chose) and in developing personally as one who has a PhD. Yes.
That’s not to undermine the challenges autistics face; being an autistic, it’s a whole lot more to deal with than becoming a doctor. But, even with bouts of depression, severe stress, numerous daily challenges, and the adknowlegement that it may well never be easier than my worst moment, I wouldn’t miss any of it, and I wouldn’t miss what I had. I grew so much because of it all, and I’m proud of it.
In fact, people and society at large seem to value having come through conflict a better person. If that weren’t true, a whole generation would be without horrible “I walked uphill in the snow to school both ways” variations. If that weren’t so, the whole “challenging environment” value for schools wouldn’t exist. Heck, the whole puzzle industry would go under.
On the other hand, moderation is nice, especially with the extremes that autistics tend to face. That’s why some therapies exist for people, not just autistics, and why people often take classes to learn how to manage their lives (on a tangent, martial arts, and particular Tai Chi, have done wonders for me). And people should have a break. But if life was only relaxation, it would, at a minimum, be a very uneventful world, and the highs that people experience wouldn’t really exist, and highs really do come out of, by overcoming, a conflict.
And, yes, I want to participate in a digital group hug.
Cliff
Please do organize that digital group hug, even sooner than later—-it’s something many of us need, more often than not.
Athina,
I tip my hat to you for brevity! You said in a nutsthell, what I’ve been wearing out a keyboard in expressing. Bravo.
Like you, I know the day is coming when my boys will feel the sting of ‘rejection,’ and probably sooner, when my daughter will sense it on their behalf. That will be a bad day for me, I know. Someone will intentionally hurt my kids, and there won’t be jack-sh__ I can do to prevent, stop or lessen the impact…other than to continue to love them, build up their esteem in good (and valid) ways, and try to steer them towards people and places where they’ll be met with acceptence. (For one thing, I think I’ll come back here and try to organize a digital group hug to get through the day!)
Regards,
Dan
Well, the way I see it autism doesn’t define who my boy is. Yes, he is autistic but this is not who he is. I just wish he could get rid of all these obstacles that hinder him from revealing his wonderful personality and his unlimited capabilities to the rest of the world. He is still very young to realize his condition, but I guess it will be in no time that he will feel the rejection from other “normal” people for something that he is responsible for.
Amy,
I’m with you about ‘public education.’ Is it just me, or does the combination of “free” and “compulsory” strike anyone else as odd? Almost Orwellian.
My quirkiness (how does one conjugate the verb “to quirk?”) probably is responsible for this, but I loathed school, as I experienced it up until college. I hated it so much, I almost went into teaching. (Idealism: thinking you change a teaching institution’s mind/heart/direction.)
My grandfather taught me “mental math,” and in high-school, I was considered a genius for it. And, I wasn’t really very good at it. But, the standards were already starting to slip 20-25 years ago. Not sure what a math ‘concept’ is that doesn’t involve multiplication, divistion, addition, subtraction (paranthesis, powers, etc.)….Not sure if I’d bother. But, kudos for the “no-calculator” rule. May I suggest that at least one term paper be written long-hand? Or would that shock the educational system too much?
Regards,
Dan
amy, I’m completely out of the loop about the teaching of math! I used always to avoid calculators—-I wanted to do it by myself.
athina, we’ve a lot to do to change the world to make it better for our kids—we have had so many difficults moments with strangers that I have acquired something like blinders. (not that that is for the best.)
Cliff, thank you for your writing in here—-being around 5 feet tall myself, I would say I like to use shortness to its every advantage.
Hey, I’ll throw my hat in again.
Indeed, Dan, we seemed to just miss each other. I thought your post was well-written, and while I don’t agree entierly with the it, I really enjoyed reading it. I don’t as a matter of principle believe in “editing” people, perhaps only because I sometimes have found that I once would say that I didn’t like some part of me, only to find that I really appreciated it later. Sometimes it depends on what’s being said. For example, some people who aren’t as tall as their friends desperately wish they were taller, only to find through thought and experience that they really see some advantage and uniqueness in being short. The embrace of things originally percieved as deficency, only to find in introspection and experience that it creates something that would be considered positive in your worldview, is something I’ve been inclined to believe in.
On the other hand, there are lots of technical details to sort out when dealing with someone who doesn’t percieve social ques, especially when they do things that are potentially life-threatening. And it’s not an easy road, for anyone involved. But there’s a whole lot of my life I really now would retain that’s directly because of autism, even if it means accepting the larger consequences and details.
On a sidenote, these comments have been a goldmine. I hadn’t head “autie” before. It’s cute. I have no objection to it (even as much as I’d find it weird to have it attributed to me, but that’s probably the inner sixteen-year-old). So go ahead and use it as you like. And I now have a new read.
As a final note, to athina, I would say that I would say that the world isn’t even really aware of your son as a real person yet. They don’t understand him, so that reaction isn’t so much about your son as it is a public image. Also, if it means anything, your son may not particularly care about how the world views him in that regard. There are ways to cope with the differences caused by autism; it’s often something of a learning experience. I’m ultimately glad I’m an autistic, and I would suspect that your son might, in time, find himself thinking similarly.
It’s been a year and a half since we got our son’s diagnosis and, although I feel more relaxed about it now (I don’t cry everyday!), deep in my heart I still hope and live for the day that he will be cured from autism. I very well know that this day will never come, but it still helps me get through the day. My son has mild autism and uses communicative language, although not as good as he should at his age. People often don’t realize his condition and I’m not willing to talk about it. Even a family friend who happens to be a psychologist who works with children with similar conditions was very surpprised to hear that he has PDD. Anyhow, I’d love to offer him a cure, if this was possible, as this would mean to help him cope with life, everyday challenges and a really cruel world where being different means you are a second or third class citizen, as I have experienced so far. I don’t want to be misunderstood, I love my son’s “special” personality. I know that the rest of the world doesn’t, though.
1700 days ago
[...] word – cure – was back in my mind this week thanks to Kristina Chew’s post The Cure Question earlier this week. By way of introduction (for those who don’t know me), I thought it [...]
…I may be in error, but I’m never in doubt!
Unless you’re Descartes, who knows that he exists because he knows he is doubting—–I find a little doubting keeps me honest!
Okay, I loved the responses here! But before I read them, this entry made me think about a book I read a couple of years ago. It was written by a mom with an autistic kid, and it is science fiction. The ending is bitter sweet:
http://www.amazon.com/Speed-Dark-Elizabeth-Moon/dp/0345481399/