Why the cure analogies are invalid

Most of the time, when someone expresses a desire for a "cure" to the autism community, one of the neuro-diversity (ND) folks says, "If you want to cure your child with autism, you are no better than the religious extremist parents who try to pray away their child's homosexuality."  I have a few problems with this.

First off, a homosexual can have a rewarding and fulfilling life whether or not they are "cured".  Let's not get into salvation here, folks, I am talking about their life here on earth.  They can hold down the job of their choice, live independently, and do almost anything they wish -- except get married in some states, but that seems to be changing as well. 

Many autistics (especially those that are leaders in the ND movement like Ari, JER, Temple, etc.) also live fulfilling lives.  Wonderful.  Do I think they should be forced to take a "cure"?  Hell, no.

But what about the autistics on the other end of the spectrum?  What about the non-verbal folks or the ones with debilitating co-morbids?  Can they live rewarding and fulfilling lives?  Many of those folks will need long term care and cannot ever hope to live independently.  Is this a full life?  Not so much.

Secondly, the religious extremist is in conflict with the homosexual child.  One wants the condition while the other does not.  In the case of my older, verbal son, we are both opposed to the autism.  He has told me repeatedly that he wishes he didn't have autism.  So we are NOT in conflict.  While I have no idea what the younger son would say about this (as he is non-verbal) he is the one that will have the most limitations on his life. 

So if I do not consider a cure, aren't I dooming him to an institution some time in the future? 

Isn't that almost child abuse?  It certainly seems neglectful to not even consider the possibility of a cure.

The other analogy that is usually thrown out is that it is like you are saying you want a totally different child -- a non-autistic one.

OK, I get this one, but it isn't accurate.  If a parent were to say "I would do anything to get rid of my son/daughter's autism" then I would be right there with the ND folks to condemn them.

But I have NEVER said that I would do "anything" to cure my child(ren).  I refuse to put either of them through anything that I feel would harm him.  If a cure is never found, I will continue to raise and love these two quirky young men I have been given.  Their autism is only one aspect of their personality.

Would they have the same personality without their autism?  I actually think they would.  It has been formed.  But I do want to know what my 16 year old is thinking when he giggles for no apparent reason.  Do I care if he toe walks or flaps or makes eye contact or whatever?  Not so much.  But I would like someone to find a cure for the unnecessary violence and communication problems.  In my opinion those are not co-morbids they are the autism.

So yes, I am still hoping for a cure.

Awareness, Acceptance, Accommodations and ....

Autism Awareness ... Acceptance ... Accommodations ... and

I was recently reading a great blog post by Meriah Nichols called Coming to Terms with Disability in my Life and it got me thinking about all the buzz in the autism community about whether we should be trying for "Autism Awareness" or "Autism Acceptance".  Personally I have always said "both" but after reading this blog post, I got to thinking that we need to add at least another one -- "Autism Accommodations".

First off, we DO need to be aware that autism is out there.  Despite all the fanfare and promotions that Autism Speaks provides (personally I have some issues with them, but still think that they have done some good) there are still a LOT of people out there that are not aware what autism looks like or how different all those folks are from each other.

For this reason, I do not think promoting Autism Awareness is wrong.  I think it is still necessary.

And yet, so many higher functioning folks out there just need to be accepted as they are.  They have learned to cope with their brain wiring.  Temple Grandin has said that she would not get rid of her autism if she could.  I don't blame her.  She has come a long way and accomplished so much with her gifts.  For her, autism has been a gift.  Albeit she had some serious difficulties to overcome, but she did overcome them.  Why should she change?  She should be accepted as she is.

For this reason, I applaud the Autism Acceptance folks. 

I still think a lot of the neuro-diversity (ND) movement is inherently wrong.  I don't think that just having autism insures that you are "gifted".  For every Temple out there, there is at least one Joe (who struggles to find a minimum wage job with a coach just so he can have a modicum of independence) and probably one Alan (someone who will never be able to live independently and will need round the clock care from someone or most likely several someones).

For this reason, I think we need to add Autism Accommodation into the mix.

Joe needs accommodations.  For him, this will most likely mean a coach to help him get the hang of a menial job.  But once he gets the hang of this job, he will probably do it happily and without assistance for years to come.  We need menial labor.  Like it or not, a society that is composed entirely of college graduates unwilling to do menial labor will not survive. 

Even if ever single one of those college students works as a dishwasher/busboy/waiter/clerk/bagger during school, there will not be enough.  And there will always be those that financially do not need to do the work or are unwilling or unable to work in those type of jobs while in school.

But what about the Alans out there?  What about those kiddos that cannot hope to live independently?  Can we hope for more than accommodation for them?  Is it so selfish on my part that I still want a "cure" for Alan. 

• Note that I use the term "cure" in quotes.  I do not believe he is diseased, but I do firmly believe that there is some fundamental bad wiring in his brain.  I use the term "cure" because it is easier than typing out "correcting whatever is wrong with Alan's brain through whatever medical or therapeutic or pharmacological means become available in his lifetime" every time I want to express this feeling!!

What can we use for a buzzword for the Alans out there?  We need something for them too.  They are the ones that suffer the most with autism.  But because they can't get online and blog about how they feel when they can't express themselves, adult autistics assume the Alans of the world feel as they felt growing up.  How can they be sure?  I am pretty sure Joe doesn't think about his autism the same way Alan thinks about his.  I can't be positive of course, but considering that I think about my childhood differently than my siblings and we were all "neuro-typical", I think it is safe to say that two boyz with similar but not identical diagnoses will think about things differently. 

So why are folks in the ND movement convinced that they know what my child is thinking better than I do?  I am the first to admit, I have no clue what Alan is thinking most of the time.  I know that he is thinking.  I know he is processing his environment and trying to adapt it to accommodate his wants and needs. 

There is so much that needs to be changed to accommodate him that I can't help but think it would be easier to change him.  Not to mention, even if we could change every aspect of his environment to accommodate him, it still wouldn't be enough.  He cannot live alone and I can't help but think that is a very lonely way to grow up.  If that means that ND folks think I am trying to change the essence of him, then so be it.  I don't completely understand why the ND folks are so convinced that because I want to "cure" him, it means I don't love him.