Can we all get along?
Just this morning I was reading a post on Autism’s Gadfly, and it made me think about the tremendously different wants and needs of people at various points on the autism spectrum.
His motto is, We don’t want no stinkin neurodiversity! We need a cure.
In my writing, I have said, I don’t need a cure; I just want compassion and understanding.
Those statements seem pretty opposite to me. Yet we are both adults with autism. How can our views be so different? That is the essence of the problem. We have the same diagnosis, but we are impacted very differently.
Too much of anything isn’t good for you. Maybe a touch of autism makes some of us creative, and gives us advantages that outweigh the components of disability. However, the fact that I am high functioning and only mildly impaired does not mean that all autistic people are like me.
I do not have speech impairment. In fact, I have unusually good speech. I don’t have digestive issues, or growth limitations, or other autism-related health problems. Yet autism has still shaped my life, in many fundamental ways, and that continues today.
I have participated in several experimental studies that measured brain parameters that correlate with autism, and I match people with far greater impairment in many key ways. So I may be less impaired but our brains still share certain essential differences.
That tells me that folks like me and Jonathan may have a lot in common neurologically, but our thinking may be miles apart based on the different ways autism has shaped our lives. When Jonathan describes the way autism affects him, he sees many disabilities and few if any offsetting gifts. I see some real components of disability in myself, but also some great gifts.
Seen from my perspective, Jonathan’s desire to cure his disability is perfectly reasonable. At the same time, I hope he can agree that my desire to live as I am and seek acceptance is reasonable too.
I look at mothers whose kids are on the spectrum and see the same thing. Kim Stagliano wants more than almost anything else for her kids to talk. She might call that a cure. Kyra Anderson is more like me, in that she wants to help her child fit in and find acceptance.
Samwick writes in to my blog, taking me to task for portraying Asperger’s as less of a disability that it is, in his eyes. Yet I don’t want to understate the potential for growth we all have. And my stories do reflect my own life on the spectrum.
All of us in the autism community should keep in mind the tremendous range of impact autism can have. When one person talks of a cure, and someone else talks neurodversity, we should recognize that those individuals may be coming from very different places.
One man’s cure seems like another’s poison.
Autism is a condition that can leave one person totally disabled while making another an eccentric genius. The problem is, the totally disabled can’t speak for themselves, and high functioning people like me can make autism appear less serious than it is, for those more impaired individuals.
When the less informed public looks at me, and thinks, “There goes a successful guy with autism,” it may create the impression that anyone on the spectrum can be equally functional. That is simply not true. Everyone can grow and improve, but some people always go farther than others.
If a person has serious speech difficulty as a consequence of autism he’s going to have a much harder time making it in American society. If he does not progress as far as someone else, that does not mean he’s lazy or stupid.
It’s very hard to maintain a balance between recognizing latent potential in people, giving them hope, while still being cognizant of the fundamental limitations autism may impose.
I just wish people could discuss these issues without the bitterness and hostility that breaks out.
these are emotionally charged issues to be sure. raw and often battered nerves can make it awfully difficult to see anyone else's view.
but once we delve below the hurt and the anger and start not only talking at but listening to one another, we might just find some level of understanding.
some time ago, i wrote the following .. i thought it was worth repeating here ..
‘As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.
I’d hate to see any of us spend what could be useful and productive energy tearing people down.’
One of your best blogs and one of the best statements on Autism Spectrum issues I've ever read.
The term "neurodiversity" is relatively new to me. But I embrace the term and what it means.
Getting others who are "neurotypical" to accept the term and concept would go a long, long way to helping AS citizens to be accepted without the stigma of what others attach to the lives and situations because they are 'different.'
They don't need to be shunned or showered with sympathy. They do need to have their medical conditions cared for and accomodations made so they can lead a useful life as they see it.
My 24 year old Aspie son will be a sophomore at Arizona State next month, and is doing fine with some accomodations for tests.
This is a terrible, touchy subject that can end friendships in a heartbeat.
In addition to the disagreements about AS and how to deal with it, I know that among mothers of children with autism, there is something of a "survivors guilt," where those of us whose children are higher functioning feel as though we should be apologetic that are children don't have the same issues as others.
I am one of those mothers, because just like you, my son has never had a speech impairment. He actually has quite the opposite - he has always spoken with the vocabulary and articulation of a 40-year-old professor. And yet, that doesn't mean he doesn't have AS.
However, I can empathize that, under different circumstances, I might feel differently. I would never love him less but if he were unable to communicate and experiencing severe frustration, I might fall into the "cure" camp. I try not to judge.
Thanks for your insightful posts!!
There are some therapies and medications which can hopefully aid an individual if needed. No one should have any issue with someone that needs assistance obtaining it.
The issue is about acceptance. Accept the diagnosis and the situation then see what can be done to help the individual. Some of the problem that goes along with an ASD can be dealt with but the person will always have an ASD.
If there is a correct diet, pill, therapy, etc., then fantastic. Let's investigate and prove them scientifically. But enough with the vaccine nonsense which has tainted the whole discussion.
Since I have not been professionally diagnosed with Aspergers it is difficult for my family to consider it to be true. Since my older son (25) likes to argue we have had some good discussions about this. One thing he said was that by calling myself Autistic could stigmatize me in people's eyes. I think it doesn't matter, since I think that people know (at least instinctively) and I have always been stigmatized.
I don't care what people think of me. In reality a classification of Aspergers/Autism narrows the reality of who you are. Yet, it does help to focus on the issue. Maybe that is why I am content to being the only one who is sure about who I am. In looking at the Autism Spectrum I have been able to look at myself as if in a mirror when I look at different aspects of what defines someone with Autism.
After 54 years I have learned to look at life in a more positive perspective (and it was a difficult lesson since I tend towards the dark and negative). I would rather look at the way I am by seeing the positive aspects. The thing is that if I didn't look at it in a positive point of view I would find it hard to want to live. I have a few things I want to do and not living will severely hinder that prospect.
I can totally understand someone who wants to change from being autistic. Yet, by the time I looked at Aspergers and saw that this might be my experience I was glad to be me. I guess if there were a cure I would say no thank you (would that then make me more unique?)
it is tough, on all of us who deal with autism every day.
i still hope for the best possible outcome for my son, an independent life as an adult. it may take him longer to get there, but i think it's possible for him. i know others are not so lucky to be able to consider the possibility.
much is sensitive around the topic of autism. thanks for your point of view.
And if you want to read more, take a look at Samwick's thoughts in response to my "schedule of appearances" post. He too makes some worthwhile points, and I tried to address them here.
Well, actually, I do not know any such kids but I know they are out there.
Do I know what to do about it? I am not sure how to answer that. It sounds deplorable, but it's more a child custody or kid management problem than an AS probelm. At least that's how I see it
Isn't it ironic that we lack understanding of each others positions and conditions when we seek the understanding of the rest of the world -wether we want "acceptance" or "cure"
Seems like a good time to tell you that my father died in January at age 80 - the last book he read was Look me in the Eye. He found it "most interesting" and read it eagerly and commented that he was "trying to finish it"
As he was clearly preparing for his end I understood hid eagerness to finish. It made sense to him. It made sense about who his grandson is, about who I am, and most of all it was the final word in helping settle his mind about who he was. I believe he died very peacfully and most importantly at peace with himself, knowing finally why he was who he was and knowing we would be okay too.
Knowledge is power.
While I'm coaxing my girls to spend a little more time in my world and a little less in theirs it would really help if the world would be a place they would want to be in.
This morning a severely autistic boy, the son of a friend, said "Manda help seat belt" because he couldn't get his belt done up in the car on the way to holiday club. I'm walking on air and grinning from ear to ear. He said my name to get my attention. Nothing beats the feeling!
Your post is spot on.
Thank you so much for writing your book. It is helping me understand my brother better. He has never been "officially diagnosed" but has always been in a world of his own. He is very bright, a robotics engineer, does very well with machines and repairing and building things but has difficulty in relating to and dealing with other people, preferring they leave him alone.
He has very few friends and I worry about him. At least I feel like I understand more now. Thanks again.
We could use a friend, and Alex could use a mentor.....