December 16, 2008

When Autism Grows Up, How Prepared Are You?

I couple of months ago, I blogged about wanting to learn more about autism… from the perspective of an adult who was living with it; a self advocate.

There isn’t enough awareness about Autism Spectrum Disorder and Asperger’s Syndrome in… adults.

What happens to our children once they’re all grown up?  Who will represent them?

Lisa Jo,’s Autism Guide, brought up an interesting topic the other day that gave me pause.

Although, her post spoke of Autism Speaks (because it is viewed as “the voice” of our community), the gist of her post was this… is the adult autistic community being properly represented within organizations that were founded to “help” the ASD community?

Here’s an excerpt from that post.

Some suggest that it’s unreasonable to expect Autism Speaks to include autistic adults in their organization because most of the best-known, most articulate adults with autism are not supportive of a “cure.” And, after all, they say, Autism Speaks is all about curing autism.

But of course not all articulate adults with autism are “anti-cure.” And even if they were – Autism Speaks is NOT all about curing autism. They are now involved with advocating for insurance for families with autism; providing grants for community programs for people with autism; providing diagnostic tools for parents and doctors. In fact, they even have a large portion of their site dedicated to education for people with autism.

Who knows more, cares more, or is more invested in financial, medical, recreational, vocational and educational programs for people with autism than – people with autism?

I italicized the end to make a point.

I know I don’t know what’s it like to be “autistic”.  My experience with autism has been as a parent to a child living with autism.  In addition, I’ve yet to meet an adult on the spectrum, so I’m clueless about spectrum life once puberty or adulthood has been reached.

At times, I feel ill-prepared for what’s-next.  Yet, I know that if I keep doing what I’m doing for HRH, everything will be okay.

I also know that I’d feel this way if my son was NT.  I’m a parent, and it’s my job to second-guess my abilities.  {wink}

Last night,  I was told about an award-winning documentary, Autism: The Wall That Knows No Limits, that was produced by a young man on the spectrum.  His name is Mike Peden.  Cool cat!  Love his energy!

This is what Mike had to say about autism and his work.

Autism is a mental disability that impairs a person’s central nervous system and how it operates, particularly in sensory awareness. In effect, autism impairs a person’s social awareness and communication skills.

However, it’s also a complex disorder, meaning no two cases are alike, and because it can’t be physically detected, is often ignored by unaffected humans. Although boys are four times more likely than girls to have autism, it knows no social or ethnic boundaries.

What was originally a project for my electronic art class became my first television program giving viewers an overview on what autism is, how it affects people, how other people respond, and the attitude taken towards it.

I hope this program enlightens you on one of the most prominent disabilities today.

Listening to Mike, I got a glimpse of how an adult male has learned to live with autism.  Like most people on the spectrum, Mike looks “normal”.

And like most adults on the spectrum, Mike has made great strides partly because he is the one who made the decision to take control of his diagnosis, and he stopped letting it control him.

Definitely a mentor for today’s spectrum youth!

Before I go, ponder this if you will…

  • As a self advocate, do you feel you are properly represented, not just in society, but within the community?
  • As a parent advocate, what are you currently doing to ensure your child(ren) are properly represented once they reach adulthood?

I also welcome your thoughts on the documentary.

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