Monday, April 12, 2010

I am autism, too. Thoughts on neurodiversity and the cure



I wrote this in response to a parent's note, but on second thought, I thought perhaps I should share it more widely . . .

For many of us on the spectrum, a parent’s stated quest to “cure” autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad, and half Mom. So when Mom tells me Dad is no good, what is she saying about me? For those of you who think this is metaphor, let me assure you it’s not.

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.

I want useful help. I want to learn how to hold a conversation, how to make a friend, how to get a job. Practical skills are what I need, not moral judgments.

That’s why it is vital to embrace neurological difference. It is not going to go away, whatever a parent may wish. Demonizing the way we are only makes us feel bad.

And that’s not all. I am a logical fellow. When I consider the situation, it's obvious that autism is not evil. It’s not good or bad. It just is. There is no morality hidden inside neurological difference. It's not logical.

It’s taken a lifetime to begin to understand the myriad ways that autism has shaped me. Indeed, as an adult, it’s just one of the things that make me who or what I am. It’s easy to dwell on what I can’t do, and from there I can surely blame autism or anything else for my failure. But I know that’s not a line of thinking that leads anywhere. So I try to focus on what I can do, and it makes me feel good to to say, “See this great gift I have? It’s because I’m autistic!”

Maybe you don’t agree, and maybe it’s not even a gift in your opinion, but why not let me have my joy over that bit of being?

Life goes better for all of us if we change what we can, and accept what we can’t with some semblance of a smile.

There is nothing wrong with wanting to take away a disability. That's a great goal, and one I fully support. What's wrong is making something out to be "bad," and then failing to take it away; leaving us stuck with the "bad" irremovably bonded to us.

Moral judgement has no place in the world of remediating disability.

64 comments:

Martian said...

I don't know if it is relative but sometimes I think that now I know I am an autistic person and now I know I am strange or weird for others.. If I didn't know that I was autistic I wouldn't think that I was different. Now I know it and it's kind of making me sad. I know now why I was feeling different, that's good. But at the same time, I know now I am different...makes me feel more like an alien. I don't know. My thoughts change everyday.

Martian said...

I'm trying to say that I can't say I feel relieved or satisfied, just the opposite, I am crushed. Only my goal is reached: I know what I have to know; I have understood all that has happened to me and what I am..

John Elder Robison said...

Sometimes I feel sad too, and crushed. But before I knew about autism, all I knew was, I failed. Now, knowing part of the reason why, I have a better shot at succeeding.

But I know what you mean; it's a struggle to stay up.

Valerie Foley said...

Thank you for writing that. Just thanks.

From me, from my son (who is autistic), from all the people who may understand and consider their own words before they share them.

SewDragonDesigns Embroidery said...

I wish I knew a way to get my 16 yr old just to accept that he has Aspergers and to be willing sometimes to be a bit more forgiving even with himself.

Lisa said...

Thank you for reminding people not to put so much into thinking there is a "cure" or to change them. I as a parent of an asperger kid know all to well how easy it is to fall into that trap of people saying you need to change this and this. I look back at some of the time I wasted trying to change her to what society deems socially acceptable. I now realize how special a gift it is because without her having it she wouldn't be who she is today. I love her just the way she is!

Lisa said...

Thank you for reminding people not to put so much into thinking there is a "cure" or to change them. I as a parent of an asperger kid know all to well how easy it is to fall into that trap of people saying you need to change this and this. I look back at some of the time I wasted trying to change her to what society deems socially acceptable. I now realize how special a gift it is because without her having it she wouldn't be who she is today. I love her just the way she is!

David said...

John,

As a parent of a child with Autism, I appreciate your insight, I think in a small way it has helped me become a better father to Michael. What you said is exactly what we want for our son who is 8, we want him to make friends, get a decent education, have a job and be able to express how he feels to others. We understand how he feels but want him to be able to express that to others.

Again thanks for your continuing insights.

Melissa said...

One of my eleven year-old triplet boys is very high functioning, but still, he has Asperger's and kids realize he's "odd". His brothers are "neurotypical". We're lucky that we're in a school system that has special socialization/counseling groups for Asperger's kids. He's made a few friends, not many, but a few. The teachers love him - he's brilliantly bright and has lots of great ideas to offer in class. He makes straight A's and reads voraciously at a college level. All in all, he's doing very well. We always encourage him and tell him that Asperger's may make him odd and it may make some things more challenging for him, but it also makes him very special, because he is. He is convinced that one day he will do something outstanding with his life and has aspirations to become a scientist. We'll do what we can to help him make this a reality for him. I understand that parents of children that are not high-functioning may want a cure - I think that what they really should be fighting for is a treatment to help them "reach" their children. I think those parents have a much different road to travel that the parents of kids with Asperger's. Of all the kids with Asperger's that I know (and we know quite a few) none of them seem to me to need a "cure". They are all great kids in their own ways. Perhaps one's parents may want their child to stop perseverating by flapping or stop the tendency to lie down in class and refuse to participate or like in my case, I'd like my son to stop with his know-it-all tone much of the time. However, none of these kids are in need of a cure in my eyes, they're all cool kids. Since these kids have been diagnosed at early ages and will have lifelong awareness, they will not ever have to feel crushed or alien, except maybe while in the few years of Jr High and High School when we all feel like that for various reasons.

Jannalou said...

Martian,

I know exactly what you're talking about - how you say you feel about being autistic is how I felt for a long time after I was diagnosed with ADHD in 2005. I was 28 when I got diagnosed, so I had a lot of living with the differences and no explanation for them. I thought having the explanation would make me feel better, but it didn't really. I can tell you that it does get a little bit easier in time. And, of course, there are good days and bad days. Sometimes I wish I didn't have ADHD and I feel broken; other times I'm neutral about it; and other times I am really happy to have such a random mind.

Shannon said...

I grew up with Autism a huge part of my daily life. My sister falls into the "severely" Autistic category, and now my son has Asperger's syndrome. And I cannot tell you how hurtful it is for people to use negative connotations and attach them to Autism or any ASD. It angers me almost. Autism is not a disability. There is no normal. I think people can be so intimidated by what they don't understand that they will spend mass amounts of time trying to change it. Instead of seeing it as a disability, or a disease, or disorder...why not see it is a gift? My son has an understanding in some subjects that I cannot even begin to understand. He has the ability to fix things that I would struggle to plug in. He knows music and the different instruments used better than any other seven year old I have encountered. I don't try to cure him...I try to help him. He wants to be able to socialize, I search for tools to help. He wants to understand emotion, I seek help for him. There is no cure, to date. So we should embrace the differences, embrace the growth, and search for more proactive and supportive ways to take this on. Thank you for your post.

Kimberly said...

Bravo John - well said. I particularly like your next to last statement/paragraph.

Kimberly said...
This comment has been removed by the author.
Bradley said...

Sometimes I wish that aspergers weren't necessarily classified as a "disability". I have many quirks because of it and have been told that they are "issues" that I should get help for even though they don't really have a detrimental affect on me or anyone around me. For example I have a very selective diet but I do get all my nutrients, the only thing different is that I like less stuff than most people. I didn't even think to get diagnosed until it started hindering my grades in college. Most of the time I try to think that I am just different and not disabled because I am just as capable at living my daily life as others are, even with my quirks.

John Elder Robison said...

Well, Bradley, you are not necessarily disabled by Asperger's. You always have that difference, but whether you are disabled by it depends on your ability to develop coping strategies, and also to a large extent, the environment in which you live or work.

crazymom said...

My son has Asperger's Syndrome and I spend a lot of time talking to him about the gifts he has because of his Autism. He is even proud of being Autistic, even though he realizes that there are things that he has trouble with due to his Autism, such as understanding social rules. He is such a wonderful person and I am proud of him, and wish everyone could see him as I see him.

m.a.collins said...

I am a 42 year old man who has spent my whole life struggling with the fact that I was "different" and didn't know why until a few years ago when I found out that it was Asperger's syndrome. I have been in and out of college off and on throughout my life, and I have taken a lot of Psychology classes trying to figure why I was different, and I wasn't satisfied with the varying diagnoses by Psychologist and Psychiatrists. Because of your work and the work of Dr. Temple Grandin, Asperger's syndrome finally has been taken seriously by the medical community. Thank you. -Mark

jonathan said...

None of the parents who want to cure their children of their autism are making moral judgements. They only want a better life for their children who do have an impairment which prevents them from having a decent life.

If anyone is making a moral judgment it is you, who were able to get married twice, have friends, get an engineering job that paid $100,000 a year or more, and were able to start their own successful businesses and write a best selling memoir. These are accomplishments that at least 99.9%of those on the spectrum, myself included will never be able to do. Who are you to judge parents of these children whom you don't know. Who are you to judge someone like myself who can't get married, never held down a job where I could not even make a third of what you made and never really had a full fledged girlfriend. Others with autism have it quite bad compared to me though.

Granted, a cure is not realistic in the short run, but it is a goal that hopefully sometime before humanity ends could be accomplished. Interestinly it is the stated goal of the organization you are currently on the science board of.

I also see no difference, morally or in terms of making a child feel bad, between telling them their disability needs remediation and a cure.

eerie said...

Martian,

I too have felt that feeling of now knowing, more than I was aware before, how different I am. I have moments of thinking about how odd I must have seemed to different people at different times and not even realized. Sometimes it makes me feel a bit sick to my stomach to think about people laughing at me and me not even knowing.

But what I'm realizing is that knowing I am autistic while it does make me realize how different I am from most people also is beginning to make me feel like there are others like me. I never had that before. I'm even struggling a bit with not feeling as unique but that's a whole other story(o:

So what I wanted to say to you was, Yes, you are different from some people, but not all people. You are the same as some really amazing ones. We are not just many different individuals apart from the "real" people. We are our own tribe of people, just as real as any other group.

John, Thank you for writing this. Though Autism Awareness month I've been thinking about this alot and you helped pin point why it has been painful.

S said...

People who are very high functioning I feel can't speak for very severely impacted people any more than I can-there is such a huge range in autism like many things. I worked with a boy with an untreated seizure disorder and autism and he was always slamming his head at every opportunity into hard object he could. I tried to stop him from hitting his head but wasn't always able to in time. I have a high functioning autistic son who isn't Aspergers who may never marry, has only a couple of friends and may not be able to have a job. He himself is a gift, but his autism is a disability-he is not autism, he is himself, he has autism,it isn't him. We work around it the same way as if you have any problem, it doesn't make the problem bad, but to say it's not a problem is not always realistic for everyone. If I have diabetes, it's a problem, if I have ADD(which I may)or depression(I do), it's a problem, anything that makes things more difficult for me is a problem. It's not judging,it's just a fact. Disability just means it's harder to do some things and some may not be doable, some will. We see daily what is possible that day:)Sally

bigesqt said...

Tammy Reynolds via John Elder Robison: Thank you for this comment. My son has Autism, it is not who he is. I don't want to "cure" my Ben! He is an amazing child! People only wish they had a handsome, smart, funny, quirky, tender child like mine. It might take him longer to get things sometimes and we might have to go about it in different ways, but usu...ally, eventually we get there. And if we don't then we make do without and figure a way around it. Having a child with autism has made me a better mom. I love my Ben and I am so sick of people's reactions to Autism. I've even had people ask me if I would change things if I could. Really? Have you met my Ben? I wouldn't change him for anything! He's perfect the way he is! And because we have embraced Ben and worked with him he is doing amazing! So much so, that people have come to observe him in the classroom because they can't believe all that he has accomplished. Really? You don't know my Ben then!

eerie said...

I agree that we can not speak for others, we can only speak for ourselves.

I do not agree that anything that makes life harder is bad and must be abolished. I can not tell you what is happening inside of someone who can not speak. I can not be sure that it's awful in there. I know that for me the most difficult things I have ever struggled with have ended up being my greatest gifts and for me I do not want any part of who I am or who my sons or husband are cured.

Would I feel different if I was different, if they were different? very possibly. But for my time and energy I will be putting it toward exploring the amazingness that is who people are now and what could help them reach the goals and greatness (even if that doesn't meet someone else's idea of greatness)they are capable of.

Alex Bertrand said...

I completely agree. I'm a 16-yer-old Aspergian, and for years it always puzzled me why I reacted to and comprehended things differently than my peers. Hearing about the autism was big for me.

Debra said...

Autism is not something we will die from but something we will live with. I feel we don't need a cure as much as we need a definition. We need to understand what it is. We know the characteristics and the behaviors. We have the effect but not the cause. That is what I hope research will tell me. My son would agree with you John..you don't need more stuff to feel bad about. An autistic way of seeing things is so unique. Autistic minds have so positively made an impact in this world. We need people who see things and approach things differently. That's how discoveries are made. It takes neurotypical minds and autistic minds working together.
NEURODIVERSITY- I like it.

Anteater82 said...

Well stated, John. I agree with your points completely.

James said...

I agree fully with what you've said John. I guess my parents and I discovered I had Asperger's fairly early (right around my freshman year of college) but I am still glad I have it. I admit that it would have been nice to actually have some best friends or be able to participate in social gatherings (ie. parties), but as for the fact of the matter, I am going into a career field that I love specifically because I am very good at it.

Also, maybe I am fairly high-functioning because I am able to hold down a relationship (although there are awkward moments) and a job (as long as it doesn't deal with people) but I do know that I struggle getting myself to do things that I don't want to do.

I cannot speak for someone on the lower end of the spectrum, but I can understand where "gift" becomes "disability."

BlogStalker said...

Good grief, I am one of your biggest fans, but you are breaking my heart here. Yes, you are autism too, but you are in a small percentage near the top. If the idea of cure offends you, by all means, if/when one is developed, DON'T TAKE IT!!!!

But please don't tell me that it's a bad idea for me to want a cure for my child's seizures, head banging, gut discomfort, inability to use a bathroom by himself, and complete lack of concern for his own safety! He runs off at any opportunity, not because he is BAD, but because his autism doesn't allow him to develop his natural instinct for survival. And if he's lucky enough to be found by the cops, he can't tell them his name or his phone number.

I feel like you are the one making a moral judgment against me. Hip hip hooray if autism has turned out to be a gift for you. What about the ones for which it is pure misery, and that's not because anyone is telling them it is. They live it. They know it. No one has to make them feel bad about it, they already do.

I love him, I celebrate him, I accept him, I accept you - but please don't be a road block in helping him have a better life by saying he doesn't need a cure. You are in a position now to influence such things. And you have that power BECAUSE of your autism. So sure, it's something you can feel good about. Please, use that power responsibly.

Silk

princess1710 said...

I feel crushed for my son; but at the same time I feel that "look what I can do!" He is very very good at computers; in that he can repair and take apart and put together virtually any type of computer and people in the family and now branching outward are rejoicing to him how wonderful he is at this task! (my son was diagnosed at 12...) However he has had this wonderful "gift" of being able to have no fear of taking these complicated machines apart since he was 9 or 10! (before that we had to tie everything else in the house down! Remote control cars...anything that had a motorized component to it..) so, yes, this is showing the world, "HEY LOOK AT HOW GOOD I AM AT THIS!!!" and be proud of it!!

John Elder Robison said...

Blogstalker, Jonathan and others . . . I think you are misreading the message. I agree with your desire to make your kids or yourselves better. Any reasonable person wants their kid to be the best he can be.

My issue is really with parents telling kids autism is a bad thing that has to be cured, when there is at present no way to effect such a cure.

What that does is leave us (the kids) bad and unfixable.

I suggest it would be healthier for our kids to avoid this talk and focus on making improvements which do not cast moral judgements that lower our self esteem.

forsythia said...

Personally, I think we need to thank those with Aspergers for many of the advances that have made life better for all of us.

Tom Caruso said...

What a wonderful blessing you give to all beings, not just those labeled as autistics. You have been given a gift: a view of the truth of our being that we are no different from one another, and that everyone has something to offer.

You are not who others tell you you are, nor are you what you think you are. You are that being that can not be thought about, but you experience it in your being, as do all of us, and in that we are the same, and in that we are equanimous with all that occurs to us in life.

Queenbuv3 said...

Thank you for saying this. Our son is considered severely Autistic and low functioning but we have always accepted and loved him and focused on what he can do. I find that the parents that hate Autism and want to "cure" it are the ones that are more concerned with being burdened with a disabled adult child, care too much about how other's see their child and had/still do have a vision of what their child was going to be before they were born. We have never expected our children to be anything other than who they have turned out to be.

People think I'm crazy for accepting my son's Autism and that acceptance means doing nothing. He has had early intervention since he was diagnosed at 18 months and been in school full time since he was 3. He has made tremendous gains. How can parents say they hate Autism but still claim to love their child? You can't throw the baby out with the bathwater. Love is unconditional. When you love someone you accept them as a whole. You encourage them to be the best that they can be but accept that they are never going to be perfect. When you love someone you respect their RIGHT to be an individual and have certain quirks, preferences, likes and dislikes.

I truly believe that our constant love and acceptance of our son has done just as much as all his therapy and schooling to help him make the amazing amount of progress that he has made.

Thank you for continuing to be an amzing and outspoken advocate for the rights of people on the spectrum : )

Annie D. said...

John, we are at the very beginning of our journey through Aspergers, and this is truly how I see it, a journey.

Philip is four years old. My determination is to teach him his unique qualities are to be celebrated, not "cured." He is amazing the way he is. As Philip's Mother and guardian, I take my job very seriously. Many people have come out of the woodwork with advice on how to make him "better" with various adjustments in diet or whatnot.

Maybe people need to slap the hope of a cure on those who are supposedly "ailing." That is not how I feel. My son has a weak social muscle, so I strengthen it with help on imaginary play, detailed explanation of his emotions or mine or his sisters or his dad's. We are joining an Asperger's group, I'm reading any book I can get my hands on, we have a Dr. we work with, and are enlisting an OT and a SP.

It is my JOB to make Philip's world comfortable just the way he is. I celebrate that he is four and ready for second grade. It's to be celebrated. Not cured.

Lettershead said...

Thank you for posting this. I have always had issues with the concept of a "cure" because I see the incredible gifts of the people I know with ASD, and I don't want them to change, only to be happy and fulfilled. Last week my son asked if he has autism - I was never sure if he would become aware of it because his level of functioning varies wildly, but now I am trying to figure out how to help him understand where the concept of having autism fits into his life, how it makes him different and special, and how he can overcome its challenges and exploit its gifts to become an even more extraordinary person than he is now. Your writing has been so helpful - thank you again.

CarleyAdamson said...

Thank you so much for writing this. I agree completely that my son does not need a cure. He needs help developing coping skills, social skills, fine motor skills even, but not a cure. I always knew that Jordan was different. He never slept as an infant (he still doesn't!). He couldn't walk or talk by 1 year of age like most kids. But by 3, he could walk through a parking lot and name every car make and model that he walked by. He would line his little cars up in the window sill of our house for hours, being careful to not disturb a color pattern that he would create with the cars, or sorting by name. We learned of his Aspergers almost 4 years ago after a very dilligent group of teachers suggested it may be what's going on with him. Sure I wish he could have friends that wouldn't turn on him when he cries during a fire alarm. Sure I wish he could write like a fifth-grader does so he wouldn't feel bad when his teacher can't read his writing. Sure I wish he didn't *feel* so different all the time. But his Asperger's has made him an amazing child! I wouldn't wish for a cure for him! He's not broken! I knew when I decided to have children that my children could be born with anything! Asperger's has been a challenge at times, but always, always a blessing. He has down days where he wishes it away, sure. But it's my job as his mom to remind him that while life is tough sometimes, it's his Asperger's that allows him to read on the level of an adult. It's his Asperger's that allows him the understanding to be able to design video games and working robots in his Tech club at school. And it's also his Asperger's that has caused him to feel pain from others and know that he can't do that to someone else. He is the sweetest child I could have ever wished for and I would never wish to "cure" him. Help him to cope, help him to get through life, yes. But a cure? Never. I will search for ways to help him and I will love him unconditionally, which is what he needs.

John, thank you for all of your writings. It has truly helped me understand what is going on his mind sometimes. Keep doing what you do.

Bonnie said...

Well said Queenbuv3. Everyone needs love and acceptance, especially from us mamas! Our goal has always been to increase independence, build on strengths, but not to stamp out our son's wonderful personality. At the end of the day we are parents and our children, are just that our children. They need our love, encouragement and acceptance. If we don't celebrate who they are who will?

sewswedish said...

John, I read these 2 quotes somewhere (don't remember where now) and I really liked them:

"There is no cure for Asperger’s Syndrome, nor is there a need for one. It is not a disease or an illness; it’s a unique set of traits which may be the catalyst behind some of the greatest human achievements."

"Asperger’s is the ability to create something different to standard thinking since it allows the expansion beyond social acceptability."

My 20 year old son has Asperger's and was diagnosed at age 16. I don't want a cure for my son. He is perfect the way he is and I couldn't imagine him being any other way. What I do want is understanding and tolerance from others for those who are considered to be "different".

My son was recently dismissed from his college internship because he was perceived to be disinterested and bored. This assessment by his supervisor was based solely on my son's lack of facial expressions, due to the Asperger's. My son's graduation will be delayed by 3 months because of this ignorance and intolerance. My son felt that he had failed. We have assured him that it is not his failure, rather it is the failure of society.

Dana Meijler said...

Thank you for this post. It is difficult for me to express how much you have touched me with this. I think the same things about my daughter all the time but could not express it very well.

People ask me all the time as the parent of an autistic child if I wish she weren't autistic. Like most parents, of course I wish that my child didn't have problems or didn't have to struggle for things. But also, she is who she is, a beautiful, joyful, fantastic child who just also happens to be autistic. It is difficult to separate one from the other. She is just my child. Do I wish everything could be easy for her? You bet. But do I wish her to be different than she is? No way.

Thank you soooooo much for this post.

Queenbuv3 said...

It really warms my heart to hear other parents express the same thoughts and feelings we have about their childs Autism. I feel like I belong to a minority, story of my life, but an amazing minority of people who are motivated by the purest form of love for their child. I truly beleive that everything happens for a reason, even though I am an extremely logical person that loves order, patterns, routine and facts, that there is a God and he/she doesn't make garbage. We all serve a very important purpose and some things are not to be messed with too much.

My son has taught me to be patient, understanding, empathetic/sympathetic, inventive, positive and strong. I have been on the outside looking in my whole life and am just now coming to terms with my own "quirks", sensory issues, desire to be alone, social skill deficits and that I am probably on the spectrum somewhere. My husband and I have Autistic traits and think that is probably a huge asset in helping our son and being sympathetic to his needs, feelings and sensitivities.

People on the spectrum usually have at least one area of strength that can be developed into a skill and also used as a natural motivator as a reward. I know that no matter how "severe" and "low functioning" (hate those labels) my son may appear to the world when he is compared to NT people his age that he has skills and abilities that NTs don't have.

Where would the world be without all those special people? We wouldn't be on the beloved internet sharing our thoughts and feelings with each other because only a "geek" could have invented it!

Stimey said...

I think this is wonderful. I think my son with autism has many wonderful gifts and deficits, just as any child does. As with other children, I will teach him to work with what he has and to compensate or work around what he doesn't. Work with him may be more intensive than with my other children, but it's cut from the same cloth.

Lorien said...

My big sister (in her 50s) was just diagnosed with Aspergers. I always loved her unique outlook on the world and her amazing creativity. She was a huge influence on me growing up. I don't know if this diagnosis will help her function better in the world, but it certainly won't change how much I love her.

Sycha said...

I totally agree, and think it is very important to share these thoughts. I will resume your post on my french blogue with a link to yours. This is the way I see my teen Asperger boy who always amaze me with his bright and tender spirit.

Simon said...

A very sensitively stated point, John. As an aspergian, I agree with your points entirely.

Simon
Book publisher

cath c said...

as a parent, i completely appreciate this post. i don't want want to change my son, i just want to help him to help himself through this world.

i am not a special dieting, medicating, etc parent. i want to understand how info processes through his brain and comes back out. i want to help that info come back out in a way that we can all process on an interactive basis. it's that interactive bit that's the toughie.

Ray said...

Thank you for this John.

While I may have suffered from depression because of my eccentricities and oddities growing up, knowing now why I was the way I was has not so much made me feel better but indeed took a large weight off of me. It doesn't make life easier, but understanding the reasons behind it makes it manageable.

We have not been corrupted by a malevolent demonic force, nor or we victims to pity. We may have to struggle a little longer and work a little harder -- but that's what makes our achievements that much more special.

smauge said...

People who are constantly suggesting a "cure" for my son's apergers make me want to commit homicide. What on EARTH makes them this I would want to change him in any way??
My younger child, a girl, has recently been diagnosed with autism, is now the subject of such suggestions as well.

Paulene Angela said...

Bravo, excellent post.

blogger1442 said...

This is such a tricky concept. My son has Asperger's and he doesn't react to situations like other kids. Sometimes it's scary. We occasionally find ourselves in a situation where we have to tell someone "My son has Asperger's. He needs you to..." How could that not make him feel bad? And we try and avoid it, but there are times when there isn't any other choice. Like at Airport Security once when we had a full pat down and he was very scared, almost ready to bolt and hide.

But I love the concept of Neurodiversity. Having worked with engineers and non-engineers alike, it's interesting to see how people segregate themselves by neuro-differences, just as they do in neighborhoods by economic differences. Not that segregation, driven by our own need for comfort or by any other forces, is good, but it happens and it is one of our baser instincts that we always have to work against.

I think the idea of Neurodiversity is important to reaching a "cure" for Autism. It really helps us better define what we want to achieve. Which is basically what you said, you want to be able to communicate better. Parents with autistic kids all want to be able to communicate better with their children - to touch them and reach them and help them touch and reach others. Our goal isn't 'normalcy' we can't define that. It's understanding. It's high functioning. It's acceptance and happiness. And part of that 'cure' has to come from the greater population having empathy for Neurodiversity.

Gillian said...

I just saw this post and the corresponding responses. It comes at me at a perfect time for me. My son has struggled the past two school years and I had finally figured out why this past week. Three years ago he had a teacher with which he flourished. She emphasized and constantly reminded ALL of the children how to make good choices and of all the good things they were capable of doing. This year and last year he has been with teachers who are constantly talking about and reminding students what their bad habits are. The result in the atmosphere in the classroom is amazingly negative. The impact on my child has been horrific.

John, I agree whole heartedly with your message of focusing on what our children capable of. It is something we need to remember for BOTH our NT's and Aspergians.

Sensory Mom said...

I am personally sick and tired of many people, Jenny McCarthy, (for example), talking about a window of time to "CURE" and autistic individual.. "Just do a little this, and PRESTO!!! All better!!! There is no known cure for Autism, like it or not.. Rather, we have AWARENESS,EDUCATION, EARLY INTERVENTION, and ACCEPTANCE.. Was I sad when both my boys were diagnosed with Aspergers? Nope.. I accepted it, and deep down in my gut, I knew. Was life hard growing up for me with Aspergers? Yes.. For my hubby? Yes.. Its' still hard at times... But I thank God everyday that I have the knowledge to understand and say, "Oh, that's why I/we did/do that, or was treated that way, or whatever." It is nice to know...Without Autistic people, the world would not be the wonderful place it is.. Their/our unique minds, contributions, personalities, curiosities, etc., make the world a better place..

Jennifer S. Florida said...

I completely agree with you, John. Autism isn't necessarily bad or good. It just "is". In our home, discussing my 8 year old son's autism is just like discussing my other son's red hair and freckles. These things just "are". It's not something we want our family feeling bad about. We just live with it and talk about it and do what we can with what we have. Now my son is happy to talk with me about autism and asks frequent questions about AS. Every one of us has uniqueness and in our home all of it is okay. Yes, sometimes dealing with autism can seem weird, but in my own personal opinion, weird can be very very good too.

Jennifer S. Florida said...
This comment has been removed by the author.
Martijn said...

I completely agree with you John. but this does not mean i will not look for ways to help my son in his struggle to understand the world.
For this we have now a Labrador dog which works great with our son. It calmes him and it is a loyal listener to his stories about computer games :-)
Another thing is that we try to structurize and visualize a lot.

Martijn vann der Kooij
Creator of Picto Selector - www.PECSforAll.com

Ice Goddess said...

Having my daughter and her eventual diagnosis answered a lot of questions about myself and why I just didn't fit in. It seemed no matter what I said or what I did that it ended up being wrong, often with my foot in my mouth over blunt observational comments or obsessing over little details that couldn't wait for a more appropriate time in which they could be addressed.

I've often pondered in the past whether or not it would have been better if I were born "normal", but now that I have a grasp of my own mind, even with all of its flaws, I don't think I would say the same thing now. Sure, many view me as odd, but I've learned to get along just enough to hold down a job and now I'm getting paid to return to school to obtain my masters degree. I am raising two children with PDD-NOS and married to a wonderful husband who also received a diagnosis of Asperger Syndrome last year. The people that matter-- that is, people who are kind-hearted individuals-- respect me for what I've been able to accomplish, laugh with me when I fumble, fidget or stammer. They respect that I don't expect the world to pity me while I cry in a corner, but rather I have built upon that which was given to me and found my identity and place in this world, no matter how strange a place that sometimes can be.

Autism is a part of me and my whole family. Like you said, it isn't bad and it isn't good. It isn't my whole identity, but it is a big part of it. When something encompasses everything you say and do, it's impossible for it not to play such a large part.

Madmother said...

I think I will leave it up to the words of both my children to explain how they feel:

Boy 1 (then aged 9) when queried about his differences "I have Asperger Syndrome. You do know you need to be awfully smart to have it."

Boy 2 (then aged 8) when asked about his brother "Well he is going to be a scientist so he has to be a little nutty."

We have never called it a disabilty, but rather differing abilities. I want to ease the way for BOTH my kids, help them in their battles, but not fight them for them. Try and make them the best they can be, all quirks intact.

vsheehan said...

Lets say ASD was a tumor in your brain. A tumor that you had all your life and it only hindered you as much as ASD has so far would you leave it in your brain? The operation would have no other negative effects accept allow you to lose some of the negative effects of ASD especially the anxiety. Do you leave the Tumor in? Being Gay is Neuro diversity, no negative effects caused by the neurological make up it self. ASD with symptoms that hinder your ability to live life fully Hmmm.

Did you know there are people who live for a Long time with stage 4 cancer? I bet they want a cure even though they can live with the cancer. The people do get positives from the cancer, a new out look on life, a better understanding of what they really need in life ect. Everything in life has Neg. and Pos. consequences at what point do the Neg out way the Pos?

I tell my son ya you have ASD that's why you react differently then others. Need to learn other skills people get naturaly while you get other skills naturaly others need to learn. I tell him his lucky that he gets to learn how to jump hurdels when he is young while others never learn and fall. That it gives him positives and Neg. that with extra work he can overcome those neg while highlighting the positives.
Like Written Expression Disorder a part of ASD for some people. My son has overcome it with a lot of NEEDED INTERVENTIONS . His teacher actually asked him last week if he downloaded his last essay of the net it was that good. So in our family that is a sign that he has beaten that part of ASD. HAPPY DANCE Now the anxiety ugh.

志源 said...

I love readding, and thanks for your artical. ........................................

Joe said...

I discovered I had Asperger's two years ago when I was 45 yo. I have to say it was a HUGE relief. For so long I thought there was something wrong with me. That was was somehow responsible for being "not right in the head." Now I know it isn't my fault. I know it doesn't make any sense. How can I think I'm a bad person just because I don't understand what is going on around me WRT the rest of the human race? But, it doesn't matter how rational you are. This kind of stuff never makes any sense.

Adoption of Jane said...

I too am not fond of the "cure" hoopla! Thank you for your post it inspired me to do and write about this:

http://knottyawetizmmama.blogspot.com/2010/05/terror-retires.html

JDellinger78 said...

ohn,
Your insight into Autism has been a blessing for me. I am the mother of an 11 year old boy with Aspergers. He is incredible. He exhibits many of the same traits that you talk about. I have never seen him as bad but "it is just the way he is." BUT I have never understood why. Why isn't such an important question, except, I don't always know that I am saying or doing the right things for him. He is an incredibly gifted young man. Due to his social differences, he has been the target of bullying. You halp me help him in a more positive and productive way! Thanks again

Ashley said...

i was surprised to see autism speaks listed as a resource at http://www.johnrobison.com/resources.asp, as this is an implicit endorsement of them, and i had yet to see any person on the spectrum endorse them. i'm even more surprised after seeing this wonderful post.

John Elder Robison said...

Well, Ashley, Autism Speaks has certainly alienated many autistic people with some of the things they've said. Having started as a parent organization they do have a different view than a self-advocacy group.

That said, I have met many of the key players and I believe they want the same things I do and their hearts are in the right place. I think you just have to look a little deeper than some of those messages.

Autism Speaks funds a lot of good research, and I hope to steer future research in a direction that provides more tangible benefits to today's autistic population

Brenda said...

Absolutely LOVED your book and happy to discover your blog.

Have you heard about Aspiritech? We are the first company in the US to leverage the unique strengths of autism to provide adults with Asperger's and HFA training and work in software testing.

We are a non profit located in Highland Park, IL. We got our first billable work in March and our first seven trained testers did an outstanding job. Best yet they received their first paychecks in April and May!

Lack of seed funding in this economy has only slowed us down. The management is all volunteer doing the best we can. Pease help us get the word out to people who could be of help.

Check us out at www,aspiritech.org.

Brenda Weitzberg
brenda@aspiritech.org

fiona said...

i suspect my 39 year old now ex-partner has aspergers..there are others in his family diagnosed with asperger and autism, but in trying to get him a diagnosis so he could receive more health care, support etc, his family have turned against the issue and said he'd be treated as a retard or handicapped..he got a negative result from an assessment, but he was under the influence of cannabis on the day and self medicates with alcohol when stress/meltdown/breakdown occur..i feel he has received a 'false negative' result due to the involvement of drugs/alcohol but doctors wont take this into account and re-assess, and so nothing has changed or improved for him.
he continues to struggle with accomodation, stress,depression,social,rage,money,employment problems,people using him etc..i find it really difficult that due to the so called 'negative' result, he is still believing that his so called 'failures' in life, is due to his lack of commitment or hardwork, when in fact its probably due to undiagnosis aspergers..
his family dont want to help him and dont want anyone else to help him either,its a sad, lonely and difficult extistence for him..and thats HIS description of his life, not mine.