Autism's Couture

For the last ten days the world of autism has been abuzz with Suzanne Wright's call to action for a national plan dealing with autism.

Autism groups and parents everywhere have met Ms. Wright's letter with scorn and offense, saying that Ms. Wright's claims of suffering of both people with autism and their families doesn't encapsulate autism.  In particular, neurodiversity groups have gone on full range assault stating that millions of autistic people have succeeded and are happy, in spite of their challenges.

Don't even get me started on all the criticism of Autism Speaks.

While this debate, and many others on autism rages on, beautiful moments like this one are happening.  Kids (and adults) on the spectrum are finding their gifts, becoming successful and finding a place to belong.

I must say that while I have opinions on all of autism's debates and at times, when I am feeling particularly feisty will sometime engage in tearing someone a new one civilized debate, at the end of the day what truly matters is our particular brand of autism and how I can help my daughter be the best she can be without killing off her joy in the process.  Besides,  autism looks different on just about every person on the autistic spectrum, therefore there cannot be one point of view, one organization, one form of treatment that can address all people on the spectrum.

Ultimately, there is room for all these points of view.  Just because I have a child with autism doesn't mean that I know what is best for someone else's child.  Hell, I am not even sure that I always know what is best for mine.

And that's the thing about autism.  There is no buying off the rack.  It's designer all the way.

It's a custom made enterprise, with lots of different designs, fabrics and colors.  You have to go through a lot of try-ons before you find something that fits.  Sometimes you need to throw out your stylist and go for a new look.  On some, it looks wonderful, and enticing, on others you end up looking like Bjork in a Pelican dress.  Sometimes the one that looks beautiful on one, looks like a burlap bag on another.

For some, it seems like nothing will ever fit like a glove.

So, while Autism Speaks is not my favorite organization out there, and I sometimes have a problem with the stand neurodiversity takes, and I am not a GFCF advocate,  I think it is good that we have all these different types of organizations out there because our autism probably doesn't look like yours and what we need is different than what others need.

Autism's Salad Bar

We've been on our journey with autism just a hair over five years now.  Maybe it is because it is a new year, a time where it is inevitable to sum things up, take stock and start anew, but it feels like an opportune time to think about where we are and where autism is.  

Well, at least where we are in relation to where autism is.    

Like many parents, when my child was diagnosed, I set out to learn as much as I could about autism.  And, just like a visit to Smithsonian Institution or the Louvre, the amount of info was overwhelming, literally just like spending weeks gazing at master works and sculptures and exhibitions without ever feeling like you have seen everything there is to see.  

Still, like any good tourist, I got in line, got out my camera and tried to capture as much as I could.  I  Googled, I logged into discussion boards and forums.  I started reading blogs and started my own blog, I've tried to connect with others in both smaller and larger ways on their own autism journey.  

Like everything else in the world, politics, religion, child rearing,  guns or anything else, the world of autism is a polarized one.  Each side clings firmly to their beliefs and the belief that anyone who doesn't think like them is just wrong.  There are a lot of people who are not at the extremes, but we live in a time and an era where the extremes get the attention and those walking the middle ground, although maybe greater in numbers are mostly eclipsed by those who claim the more petulant view or are a least more obnoxious petulant in their comments.  

Personally, this is the main reason I've been reluctant to embrace any one of the main schools of thought on autism, mostly because those that support those various ways of thinking seem to do so with an all-or-nothing type of mentality and they seem to require that others join them in their absolution.  

It's a turn off.


After 5 years of reading, researching and living with autism, I have found only one absolute truth about autism.  There is just too much we don't know and too many unanswered questions.  Therefore, this idea of boxing yourself into one way of thinking about it seems short sighted to me.  

Autism is a complex disorder, one which looks vastly different on each person with a diagnosis.  Within that, of course there are some things which may speak louder to some than to others.  I am convinced that you or your child's particular situation is the biggest dictator in what you will believe.  If your child has medical problems in addition to autism, if your child has gut problems, if your child's biggest challenges are social, sensory or academic, if your child cannot function without medication, if your child is violent or aggressive, all of these factors will largely dictate which of autism's truths you will embrace.   People often talk about truth and base their arguments and reasonings on truth, but truth is both subjective and relative and I have stopped pretending like truth is some kind of objective criteria.    

More and more though I must say that I find myself feeling a certain symmetry toward neurodiversity.

I know that neurodiversity has a lot of detractors, a lot of people who say that believing that autism (or other neurological disorders) are trait-like characteristics, not to be corrected but accepted by society is polarizing in its own right.   I get that.  If your child is suffering physically, cognitively, emotionally, it's hard to embrace the source of that as a character trait and not try to address it somehow, to try and ease your child's suffering, to try and help your child to fit more into society's expectations of what is acceptable.    

What I like about neurodiversity is the idea that their basic premise tells people, you are okay exactly as you are.  Neurodiversity at its core, to me, is about acceptance.  A lot of our autism journey has been a journey of acceptance -- acceptance of the diagnosis, acceptance that Maya is not like other children, acceptance that we are dealing with a situation where the most likely outcome is that Maya will not have every possibility open to her, that her autism and her cognitive difficulties will make certain opportunities out of reach for her.

Our approach to therapy has been acceptance and this idea that we should slow down, not overload Maya with therapy, give Maya the room to follow her own natural rhythms as much as possible while slowly trying to influence her behavior and her desire to try things in a different manner.  We haven't enrolled her in every type of therapy under the sun, because I firmly believe this is not the right course for our child, it will only pressure her more and when she is under pressure, she never progresses.

This has worked for us, Maya has made steady progress over the years.  It's not that I don't think there aren't some wonderful therapies out there to try but I don't want my desire to help my daughter, my desire to be doing something to give her the message that she is not okay, that she is not wonderful just as she is.  I don't know where Maya will end up in her life but I feel like if I put her in every therapy under the sun, if her childhood is a series of do it this way, do it that way there is no way she is going to grow up feeling good about herself.  How can you feel good about yourself if you are getting a message all the time that what you are, what your natural inclinations are is not okay?

This is what speaks to me about neurodiversity, this idea that Maya is okay just as she is.  I don't necessarily agree with the extreme views of the neurodiversity movement, which call for a total absence of therapy and corrective measures, but like anything else, there is a balance to things.  

I don't have to agree with all of neurodiversity.  I don't need to be an absolute, a true believer.  I can just believe the parts that make sense for us.   I can treat autism the same way as I treat a buffet, because the world of autism is not a world of absolutes, despite the evidence to the contrary.  I have the option of taking a plate and selecting what dishes look good for us and just because we may like macaroni salad, it doesn't mean we can't also eat cucumber salad or try the chicken curry.  When the macaroni salad isn't appealing, doesn't do anything for me, than maybe I will try the prime rib.