The Autism Wars

Today, April 2nd, is World Autism Awareness Day.

On this day (and every day) I refuse to get drawn into the wars between those who search for a cure, and those who despise the search for a cure.  I refuse to get drawn into the wars between those who would desperately want to “fix” their children, and those who wouldn’t want to change a thing.

Here’s how I see it.  Basically the “cure” and “no cure” folks fall into two camps, and what it boils down to is the level of severity of the autism they experience.

If my child is mainstreamed completely, or mainstreamed with a classroom aide, if they are able to keep up academically with their “typical” peers, if I have no doubts about their ability to function one day as an independent, self-sufficient adult, if my child is happy and secure in themselves – then I wouldn’t want anybody telling me I had to “fix” my child.  I would be angry with those who viewed my child as somehow “not good enough” or “broken.”  I’d be angry with those who highlighted my child’s disabilities and imperfections instead of how amazing and beautiful they are.  And I’d be right.

However…

If my child is a non-verbal teenager who can’t tell me when they’re sick or hurt, if my teenage child is still in diapers, if I live in constant fear of my child’s wandering, if my child will NEVER be mainstreamed in any way, if my child’s IQ falls in the “poor” range, if my child regularly beats their head against the wall, or sometimes even beats ME, if I wonder despite all my hard work and legal planning for the future what will become of my child when I’m no longer around, if I get the sense that my child is sad, depressed and overwhelmed with LIFE – then I would fight till my last breath to find a cure that would bring my child out of the darkness in which they live.  I would use all the energy in my being to raise funds for research so that this doesn’t need to happen to other children.  I would be angry with those who said no cure was needed.  I would feel left out by those who described my child’s condition in life as “beautiful,” when all I feel is tired and scared.

Both of these scenarios are autism.  I personally see both in my own community.

What I don’t understand is why the two “camps” are constantly AT each other.  I am thrilled for those with autism who are independent, capable of interacting joyfully with their environment and are able to celebrate their differences.  And I truly feel for those who struggle with autism’s serious challenges and REAL fears every day.

Why can’t we support research for a cure for those who are severely disabled and celebrate the successes of those able to overcome autism’s challenges at the same time?  Why can’t we support research AND funding for services at the same time and also recognize that some children are fine just the way they are?

Why do we FIGHT against each other when our better energy could be spent SUPPORTING one another?

There is a phrase, “When you’ve met one person with autism, you’ve met ONE person with autism.”  It’s true.  So why must we in the autism community feel the need to say “you’re with us or against us?”  Why don’t we use the same “spectrum” our kids are under, and allow OURSELVES the same kind of “spectrum” in how we respond to autism?

I refuse to be drawn into the wars.  I’ve said this before so you know where I’m coming from – I love my daughter and I would take away her autism if I could.  But I also respect you if you love your child and joyfully celebrate the autism that is theirs.  Don’t judge me, and I won’t judge you – let’s just love our kids – and on this World Autism Awareness Day try to make the world a kinder, more accepting place for us all.

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2 thoughts on “The Autism Wars

  1. It’s not the case that people with more intense or severe autism are on one side of the war and those will fewer real challenges are on the other. Plenty of non-speaking people with intense support needs, and their families, have fallen into the acceptance/anti-cure camp. Some of them, who I recommend looking up, include Ariane and Emma of Emma’s Hope Book, Amy Sequenzia, and Henry Frost. Because autism is just as much an intrinsic part of how they work and how they experience the world as it is for those perceived as less disabled.

    Likewise, there are “high-functioning” appearing people who hate being autistic and wish for a cure.

    We can’t say that one group of people should be “cured” and one shouldn’t, because there’s actually no reliable way to gauge which is which…the way autism works is that you can’t tell by the external challenges what somebody’s strengths might be, the things they understand about the world that you can’t even see, their internal life, the things they value about themselves…and because I will not say that people like me are valuable just the way we are, but people like “them” are not. Nope. Nope nope nope. We are all valuable just the way we are.

    • I realize my analysis of the “wars” are a generalization – I certainly don’t mean to label anyone – I’m just speaking from my overall experience and people I know. I also don’t mean to suggest that people with autism are not valuable. My daughter is priceless. I would just like there to be more respect and less judgment between the two “sides.” I have an online friend who was accused of not really loving his son because he wished for a cure – that’s just uncalled for. The dialog can be more “adult” than that. I appreciate the resources you shared – I’m familiar with Emma’s, I will certainly look up the others.

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