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.
But I know what you mean; it's a struggle to stay up.
From me, from my son (who is autistic), from all the people who may understand and consider their own words before they share them.
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.
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.
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.
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.
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.
NEURODIVERSITY- I like 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."
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.
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.
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.
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 : )
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.
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.
"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.
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.
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!
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.
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.
My younger child, a girl, has recently been diagnosed with autism, is now the subject of such suggestions as well.
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.
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.
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
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.
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.
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.
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
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
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.
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.
We live... We learn ... We start over and We try again. There is no perfect individual born on this earth... Not one.
Your analogy is ridiculous. Firstly, even benign brain tumors aren't that benign - they grow slowly larger in an area without any spare room, so they cause progressive degeneration. Secondly, if brain tissue is compressed for too long, it dies, so removing a tumor that's stayed the same relative size since birth would gain you nothing because the tissue it was compressing is now dead. And neuroplasticity would have reshaped the brain to make it work without that function - that's why someone who was born Deaf doesn't benefit much from getting a cochlear implant as an adult, because their brain can't make sense of sound.
But most importantly, my strengths and weaknesses can't be split up like that. The same trait that makes me ruminate on upsetting thoughts and burn my cookies because I was focused on something else is also the trait that made me read medical journals for hours when I was a teenager. Why would I risk losing my strengths, when I can look for work-arounds instead?