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.

Separating Autism from Autistics

Many people believe that you cannot separate autism from autistic people.  They say it no different than gender or race.  Last time I checked, it was still possible to get a sex change operation and Michael Jackson sure tried to change his race.

To me autism and autistic people are very different things.  To me autism is no different than any other neurological disorder.  In many ways, I think autism is a lot like bipolar.  There are some real perks to bipolar for some.  A lot can be accomplished in a manic episode.  But there are some serious minuses as well.  People with bipolar are at a greater risk of suicide.

So I decided to go to the autism expert in my house and I had the following conversation with Joe last week.

Mom: "So, Joe, if someone would come up to you and say 'I really hate autism.' would you think this meant they hated you or some of the things that autism makes you do?"

Joe (AKA Mr. Literal):  "If they said they hated autism, I would think they didn't like some of the things about autism.  Like my friend, Harris -- sometimes he can really annoy me but I still like being friends with him.  And Alan is OK as a brother but it sure would be nice if he could talk like me."

That made a lot of sense to me.

I read a blog awhile back where the mother said that her child was autism and autism was her child.  All I could think was how sad and limiting that is. 

I think my boyz are so much more than their autism.  While some of their personality traits have probably developed in response to having grown up with autism, some are just there.  Alan can't begin to tell a joke, but he has the funniest sense of humor.  Joe genuinely wants to be helpful.  Alan cleans up all the time and has since he was a toddler.  Joe is wise beyond his years but so unbelievably naive.  They are some weird little conundrums!!

When someone says you cannot separate autism from autistics, I want to say that is like saying you cannot separate red from the rainbow.  You can.  Maybe it makes the rainbow less pretty, but then again, if you have too much red it can overwhelm the other colors and make them much harder to see. 

I just want a little better balance in my rainbows.

I never wanted autism

I never wanted autism. 

There I've said it. 

Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.

Still it is true.  When I was pregnant I didn't think "I hope my older son has a hard time making friends.  I really hope my younger son still talks in single words at 15 years old.  I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules.  I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees.  I want to still be explaining basic idioms to my 18 year old.  I want to stop taking family vacations when Alan starts having meltdowns on the beach.  I want to stop certain fun family traditions because my 14 year old won't go out in the dark." 

Does anyone think these things?

But as soon as I say "I hate autism" people jump all over me. 

I really find it hard to believe that anyone wants this life.  Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it.  I would discuss the options with Joe at length.  I think he would chose to take it, but if he said "no" that would be that.  Of course so much would depend on side effects that even discussing the possibility is sort of foolish.

But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure.  Maybe they don't.  But I do.  I want to unlock the mystery inside of Alan's brain.  He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand.  I try.  I come up with all sorts of interpretations, but I just do not know what he wants some days.

Trust me, I get that life isn't fair.  DH and I regularly joke about that.  Most of the time, I laugh about our life.  After all, it is inherently funny to watch some of Alan's climbing activities.  But when he is wrecking our house and trying to climb on the electrical fixtures and the heater because we aren't letting him outside to climb, it is a little less funny.  When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.

I am terrified quite regularly when I think of the future.  I have a child that will need life long care.  What happens when I am not around to provide it?  My older son cannot care for my younger one.  Both DH and I are the youngest in our respective families.  That means all aunts and uncles are older than us.  What happens when Alan is a 30 year old adult and everyone around him is 60+?  He can already overpower me and he is still (marginally) smaller than me.

When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized.  Someone said that anyone that thought like that didn't want an autistic child.  That in fact, they wanted a neuro-typical kid.  Um, yes.  Actually I do want a neuro-typical child.  Two of them would be nice.  I love my boys with all my heart and soul, but I don't want them to have all the struggles they do.  If some people believe this makes me a bad parent, then so be it.

I've never claimed to be perfect.  Far from it, as a matter of fact!  The popular expression is "love the sinner, hate the sin."  Well, I love my autistic kids but I hate their autism.  That is just the way it is.