Thoughts on neurodiversity and the cure by Elder Robison

[Guest guest]

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.©

2007-2010 Elder Robison

[Guest guest]

I stopped thinking about a " cure " for autism a long time ago.  To tell you the truth, in my son's case, I don't believe in " autism " really.  My son was diagnosed with heavy metal intoxication by the age of three.  I believe this is what happened and this is what it is.  I believe it is iatrogenic.

I am not saying this is the only cause of autism, certainly there may be many causes or triggers, but at the root of all of them, I believe, is toxic assault upon immature, developing body systems.  This could range from the toxins in vaccines to the environmental toxins, and other toxic assaults.

I accept my son for who he now is, having mourned the child I lost who I knew and loved also --nonetheless, that was a different child, and I had to mourn for the loss of him.  I love them both.  There was the child who in the first fifteen months of his life rarely got sick after his initial bout with hyperbilirubin.  His immune system must have been okay at that time because there was an RSV epidemic going on, and all at the hospital were concerned that Ethan would catch it, but he never did.

After that, the only thing we had problems with were colic a finding a formula he could tolerate to supplement breast feeding.  He was a very confident, determined baby.  He was determined to turn over early, to crawl early, and he no sooner crawled that he stood.  He no sooner stood that he took his first steps at ten months and said his first word , and  he had several words by twelve months.

Besides the bilirubin, in the first fifteen months, the only other illness he had was the common cold.  We took him to get professional pictures when he was ten months.  My son had a laugh that was just infectious.  It was delightful.  While he was in there, the photographer started squeaking a toy.  My son giggled and squealed with delight and just would not stop. It delighted him. The laughter attracted the attention of all in the waiting room, and soon everyone was getting up to peak into the room at him.  He just giggled and giggled, and soon, everyone was laughing too.  Joy spreads.

Then at fifteen months, as soon as the shots were administered, he began to descend.  He had lost his " voice. "   The laughter was no more.  Often he stared blankly into space.  He no longer answered to his name.  We thought perhaps it had also made him deaf.  He started to get sick all the time, and then pneumonia occurred for the first time.  He suffered daily screaming spells and could not tell me where it hurt.  Once, at three in the morning, I called the physician who said, " Just let him scream.  he's eventually exhaust himself and pass out. "   Now there's a " cure "   mainstream style. 

He began to suffer repeat ear infections and ruptured eardrums.  He now had debilitating constipation, and we wound up in the emergency room several times for impacted bowel.  He had also developed OCD.  He would turn everything he could get his hands on " off and on; off and on "   over and over and over. He would spin round and round until he got so dizzy that he fell down.  It was a compulsion.  He would run fast down the hall and throw himself up against the linen door so hard he fell down.  Sometimes I'd find that he had removed his pull up and pooped on the floor.

I couldn't go anywhere without a big row.  Every change and transition brought  tantrums.  Meltdowns were common.  While he gave some acknowledgment of the existence of adults, he looked right through children as if he never saw them. 

If a child were struck by a car, there would be many things broken.  Would any parent say, " Ah, what wonderful gifts this car wreck has given us " ?Does the car wreck define the child? NO. Do the parents love the child less for getting hit by the car? NO, if anything they love the child more --tragedies wake us up and teach us to appreciate those little things we take for granted.

Will the car wreck affect the child's life long-term and change the child forever?  Probably.  Will the parents accept those changes? Yes.  Will the parents do Nothing to try to bring the child back to functioning as well as possible? Of course, they will do everything they can to help the child.  It is not the child's heart and soul the parents wish to " cure " ; it is the damage done by the car wreck.  The car wreck has the potential to change the child's perceptions of the world and even his thought processes.  Can a parent eventually come to see these aspects as gifts?  I think so.  But if the child's legs were broken in the wreck, would parents decline the means to fix the legs?  Hardly. 

So there are many things that come with " autism " that impede quality of life.  Anything done to improve quality of life is not evil.  If I had listened to the medical mainstream and taken all their words to heart, I highly doubt my son would have ever talked.  They sure didn't seem to think he would.  They told me to start looking for an institution when he was three. His neurologist called him a " loss " and apologized for thimerosal being in vaccines.

" Autism " per se is not what has drained us; it is all the medical issues that have come with what mercury did to his body.  That is the part I want to heal.  Do I want to change the essence of who he is? No!  I love who he is --all the intricate parts of who he has become, but would I have had this gift if we had not healed him so that he could communicate his thoughts and feelings?  No.  I doubt I would have been able to really " know " him.  How could he have imparted the essence of himself to me if all he did was stare blankly into space, and I can't imagine being a mother who would not want to change that.

And the horror for us was knowing that inside this seemingly catatonic state was a boy dying desperately to get out.  A couple of times during surgery, I have awakened, or at least I thought I was awake, and I felt the surgeon CUTTING on me.  I screamed, " Stop! You're hurting me!  Stop! " But the surgeon didn't hear me.  And so then I realized that it was an awakening of the conscious mind, and though I thought I spoke, the words weren't really coming out of my mouth.  I think it was this way for my son when he was young.  He thought he was telling me where it hurt.  He thought he was telling me what he wanted, and he did not understand why I wasn't responding to his words.  I couldn't because they were inside and I couldn't hear them, and so he would get very frustrated and melt down.

So I began to do what I could to heal his body and allow his voice to come out.  We were blessed that he did learn to speak again, but had he not been able to, we would have found other ways.  I taught him signs first, and he picked these up quickly.  Whatever way works for any particular child is the way to go.  I find nothing wrong or sinister in trying to give a child a voice.

He rarely gets stomach pains anymore.  This is a good thing.  Will we continue to try to heal his immune system.? You bet.  But do I want to change the fact that he has a photographic memory?  No.  Do I want to change his ability to find places using a map better than I can?  No way!  Do I want to change his creativity and his love for designing buildings?  No.  Do I want to change his love for taking pictures and making videos?  NO.  Do I want to do everything I can to make sure he proceeds toward post-secondary education, independent living, and employment?  You bet!  Do I want to do everything I can on the social level so he can get married someday?  Yes --not because that is what I want, but because he tells me he wants to get married someday.  Do I want to do everything I can to help him fulfill his dream of becoming an architect?  A resounding yes! 

We have done what we have done not to " cure " who he is or  how the triggering event changed the essence of who he is.  We've done what we've done to heal the physical damage caused by it that makes his life difficult.  We do things to improve the quality of his life.

We took the road less traveled, and that has made all the difference.  Was it the easiest road?  Gifts give something to a person.  Those gifts given to him are worth keeping, but there are parts of this, like the car wreck, that have taken too many things away, and those parts are not gifts.  I think to have had pneumonia eight times since one was two years old is a tragedy. The trigger was not of God's doing; it sprung from greed, but I do believe God has the power to make all things work together for good, and so He is has, He is, and He will.