Sunday, November 17, 2013

When Does "Awareness" Stop Being Enough?

Autism is a complicated disability. Even within the same functioning labels, there are great variations. There is a rift within the community because many people feel their autism, or their child's autism, is THE autism. Anyone not affected by their specific brand isn't really autistic, and doesn't really get the challenges that come with the diagnosis. The real diagnosis, that they possess. 

This is how it feels to me, anyway. There might be talk about how functioning labels are inaccurate, or how "if you've met one person with autism, you've met one person with autism", but the truth is there are those who hold tight to those labels. Who believe the variations in the disorder are because most individuals diagnosed aren't really autistic. Not like their kid. The struggles other families face can't compare to their struggles. If there was an award for most affected by autism, they would win.

We can say we wish the divide within the community would close, but until there is acceptance that all individuals, and all families affected by autism are, well, affected by autism, things will never change.

We say we want autism awareness, but at what point do we move on from that? 

We say we want acceptance from society, but how can that be achieved when those within the community can't even accept that what autism looks like in their child doesn't have to be what it looks like in someone else? 

We say we want services and support, but only rally behind whichever services and support we feel benefit our own kids.

Insurance reform is great, unless you choose Floortime for your child. Or any therapy beyond ABA. 

Reaching out to the newly diagnosed is great, unless your kid is turning 18 with no place to live, and no educational or vocational support. 

Walking around a track for autism awareness is wonderful, until you realize all the money you've raised isn't really helping your family. Or any family. Not those on the ground who need real, tangible help. Not if you don't care about a cure, and just want to make sure your kid is alright after you're gone. 

Slapping a magnet on your car is all well and good, until you spend your life savings on fighting a school district over your child's education, because all the awareness in the world doesn't help people understand what your kid really needs to succeed.

And all the awareness in the world doesn't prevent our kids from being thrown in seclusion rooms, or restrained, or treated like 2nd (3rd? 4th?) class citizens in the classroom.

When do we stop kidding ourselves and realize the kind of awareness some people/organizations spread is based on fear, putting autistic individuals in jeopardy? The message society gets is that these kids, these adults, are burdens no one can bear. Broken human beings who must be cured, or eliminated from the gene pool. Who don't deserve a full, happy life. Not when their sole purpose on this earth is to destroy families, and hemorrhage money. 

When we will wake-up and realize we can't have it both ways? We are living in a fairy tale if we believe using this type of language doesn't negatively affect our kids. 

There cannot be peace where there is fear.

There cannot be love where there is hate.

There cannot be acceptance when all people want is a cure.

We have failed our kids when awareness becomes enough. 

When one type of therapy becomes enough. 

When one view of autism becomes enough. 

When we silence those who live with the disability, and listen only to parents, or researchers, or teachers, because we don't believe, really believe, those affected have anything to say. 

When we write off people based on test scores. Verbal ability. Physical appearance. 

At the end of the day there are those who think only they know autism, and only their message needs to be shared. Only their therapy needs to be covered by insurance. Only their desire for a cure needs to be talked about in mainstream media, or their view of what awareness is needs to be funded. When autism is the Big Bad, the worse we make it sound, the better. 

Except when you don't see it that way. But then, who is there to support that view? 

I sound like a broken record, but I cannot say this enough. We need to be honest, really, truly honest with ourselves about what we are putting out there. What we are telling the world. What our message means for our children now, and as they get older. 

We also need to decide if the good any one organization does outweighs the bad. We have to ask ourselves, are we driven by our comfort zone, or the changes we want to see moving forward, even if things get sticky?

It's for everyone one of us to decide, individually. I think sometimes we just get stuck in what we know, and fail to look beyond that.

Do you have to agree with me? No. Do I hope all of you take a few minutes to think about what you believe, who you support, and why? Yes. Just like anything else in life, I want everyone to think independently, and decide their truth. Not based on popular opinion. Not based on any one blog. Just based on what feels right in their heart. 

I know taking time out to really think about what I believe has brought about serious change. It's never easy, but always worth it. 

Just like our kids.

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