Wednesday, February 06, 2008

Beyond THE FUTURE: Autism Vox and The National Autistic Society

Kristina Chew, Ph.D. advocates for people with autism through her blog, Autism Vox. One of Kristina’s recent posts not only addresses important findings from The National Autistic Society on adults with autism, but features very personal insights regarding Kristina’s own ten-year-old son, Charlie.

Based in the U.K., the NAS has just launched I Exist, the second phase of its Think Differently Campaign. The I Exist program has been developed to raise awareness of and campaign for “better support and services for adults with autism.” Through its I Exist survey, the NAS has found that most adults with autism are “isolated and ignored.” “A lack of recognition that autism affects adults, a lack of understanding of people’s needs, and a lack of suitable services means that most adults are prevented from realising their true potential,” the organization states.

These findings strike a chord with Kristina and, I’m sure, most parents with children with autism, especially as those children grow older. “As Charlie has gotten taller,” Kristina writes, “his shoulders stronger, his shoes bigger—eyes gets averted. People…walk on with a studied look of ‘I am minding my own business.’ Of course, people will do what they need to in public but sometimes I get the feeling that Charlie is rendered invisible by those gazes aimed the other way.”

This struck a chord with me because of the stories I’m currently writing and because of comments on the January 25 “Rate Your Bliss” post on Patry’s blog regarding people who so often feel invisible. One comment on rating emotional pain especially stood out; it’s from Chosha, an Australian blogger at A Little East of Reality: “Invisibility, for me, would sit somewhere above loneliness (because it is loneliness imposed) and somewhere below betrayal.” I find it amazing that such a simple statement can be so thick with layers of meaning. What a powerful way to describe emotional pain as something that can be caused and experienced in an immense variety of ways, including invisibility as “loneliness imposed.”

Kristina, for her part, refuses to accept that children with special needs necessarily grow up to be ignored, invisible adults. As a college professor, she’s glad to see students who struggle to fit in and succeed in her classroom; she considers them evidence that despite various obstacles and challenges, all people deserve the chance to realize their true potential, regardless of what others might think or even prefer they do. Kristina notes she’s aware of the challenge as a teacher to “make my classroom suit their needs…to get creative and teach them differently (so they can thrive)…just as Charlie has thrived because his teachers have thought differently, tried different things, and never given up.”

While results from reports such as the NAS I Exist survey raise awareness of the needs of all people with autism, I always learn much more from the advocates, parents, and teachers like Kristina Chew who provide the personal insights that put such findings into perspective. As Kristina states, people with autism exist, they are here, they’ve “got places to go and things to do and learn and we need to help to make that possible.” There’s no reason any person should have to suffer through loneliness imposed, yet so many do.

Photo © Eastern Michigan University


Blogger Niksmom said...

Karen, this is yet another thoughtful, thought-provoking post. Thanks. :-)

9:30 AM  
Blogger Sustenance Scout said...

Niksmom, you surprised me with a comment while I was still proofing the post! Thanks, as always, for stopping by. K.

9:34 AM  
Blogger kristina said...

Thank you so much for the kind mention of Autism Vox---alas, on a day when the servers and software were down! I am hopeful that, by Thursday 7th of February, all will be well-----thank you again!

11:07 PM  
Blogger Sustenance Scout said...

No trouble visiting today, Kristina! Love your post about taking the time you and Charlie need. Hugs from Denver, K.

9:02 AM  
Blogger Susan said...

You're right. Kristina is a national treasure, in my opinion. Thank you for this lovely, thoughtful post!

12:06 AM  
Blogger Lisa said...

A wonderful post, Karen.

11:00 AM  
Blogger Sustenance Scout said...

You're welcome, Susan!

Lisa, thanks for stopping by and great seeing you yesterday at LLL. Sorry I had to skip out early and quickly...had to get back to pick up the kiddies. Glad I went! K.

12:22 PM  
Blogger Marla said...

I read Autism Vox all the time. I love her blog.

5:54 PM  
Blogger Ello said...

Good post. I understand also that there are theories about too much metals in children's diets and so possibly chelation would help autistics function better. I don't know all the details but i was fascinated when I heard about the theory.

3:04 PM  
Blogger Sustenance Scout said...

Marla and Ello, thanks for stopping by! Ello, there are so many theories about possible causes of autism. Feel free to check out my list of links for blogs by parents of children with autism if you'd like to read more about the issues that impact their families. K.

1:18 PM  
Anonymous Adoption said...

thats good to know that there are blogs on autism... my cousin is autistic and a lot of times trying to deal with him can take a lot of nerve :/

2:25 PM  
Blogger Marla said...

I love Autism Vox, one of my favorite sites.

2:29 PM  
Blogger Sustenance Scout said...

Adoption and Marla, not sure why it's taken me so long to see your last two comments here! And yes, Marla, Kristina's blog is a gem (and so is she!). Autism Vox is high on my list of favorites, too. K.

7:34 AM  

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