Friday, July 04, 2008

Joining the Wellsphere Health Bloggers Network

A couple of weeks ago I received an offer on my blog email (which I must confess I don't check very regularly) inviting me to join the Wellsphere Health Bloggers Network. I thought about it and decided to join up. You're thinking "So?"

The reason I decided to accept was that this offers a potential opportunity to discuss autism with a wider group of readers outside of the autism community. When I first started this blog, I expected that most readers would be from the community of those touched by autism. While there is a wide spectrum of opinions within this community, there is - to really stretch a point - at least some common basis of knowledge and understanding about ASD. Outside of this community, this probably does not exist.

Unfortunately for the Bear, she lives in a society that not only does not understand her, but one that is often exposed to extremely negative perceptions about ASD and therefore - by implication - her. What society often sees is snippets of information - often inaccurate or incomplete - that suggests ideas such as 'autism is worse than cancer' or that autistics lack some of the features that make us human (um, then what does that make them?), or - my personal favourite - that "Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite." That last one was actually written in a major Canadian newspaper by a respected columnist, quoting someone from F.E.A.T of BC, and accepted without question or critical comment.

Even within those who work with autistics and would hopefully know better, misunderstandings and misperceptions are not exactly uncommon. As an example, in the case of Carly Fleischman, I was disappointed by the amount of surprise, and especialy the amount of initial skepticism and/or disbelief of some who worked with her. I'm also disapointed by the unwillingness of some who should know better to consider that if Carly is an isolated case, then this may be due to lack of opportunity rather than lack of potential. I'm a believer that expectations influence results, and low expectations will often be met.

To be clear, I'm not suggesting that society should be sheltered from the trials and tribulations of ASD. I also understand - although I strongly disagree with - some of the excesses spoken by 'autism advocates' to paint a bleak picture to gain support for autism services. But how does this negative advocacy help society to accept my bubbly, smiling, happy little girl for whom she really is and is in the process of becoming?

As I wrote elsewhere,

"I believe that one of the things we need to work towards is ensuring that autistics are ‘just another group’ towards whom tolerance and acceptance is extended, accepting autistics for who they are now and for whom they will become. Regardless of whether one takes a neurodiversity perspective, a ‘cure’ perspective, or is within the great swath of opinion in between, we all have an interest in having society accept autistics, and accept and endorse the right of accommodation where required."

To my mind, the way that we will get there is through a greater understanding of ASD and autistics. As such, I decided to take the opportunity to potentially reach a wider audience, and to offer a more balanced point of view. I know that many within our community do not share all (or any?) of my views, and I am no more than one voice among many. I will be clear that I am not a spokesperson for autism, but instead am offering an opinion. But I will take this opportunity, for the sake of my daughter and others like her. And if you disagree with my posts, well, that's what comments are for.

5 comments:

Maddy said...

Hear that bell curve ring! Ting a ling!

Best wishes

Anonymous said...

I've read your blog from the beginning but never commented. Enjoy your daughter. Sincerely, dianeG

farmwifetwo said...

I think Carly's the norm and we're not teaching them to communicate.

It's easier to assume they cannot. Little boy is mastering "writing w/ symbols" and this fall when my funding gets redone at the top of our "to buy list" is a laptop, a cheap one, for our W w/ S (currently on the house computer), and he and I are going to "talk" on it. Speech is difficult for him... so we're moving on.

Part that annoys me most, is that instead of "complimenting" the children on their abilities and growth... the school's still slap at what's not correct...

My school is going to get a "be careful what you b*tch about, it just might bite you in the A$$" lesson. Behavioural is coming, I've got names, and paperwork lined up for the last week in Aug... guess instead of complaining, they'll have to do the programming.

I did "eye roll" the "without ABA the kid will be a failure... " comments in the article... b/c we've being "without ABA now for 2 years" - YIPPEE!! And I know that.. to be lies. Although my T's tried to tell me otherwise....

Ian Parker said...

Hi All,

Thanks for stopping by and commenting.

Maddy, I'm used to benefiting from the bell curve, but hopefully I can raise the knowledge of others.

DianeG, nice to hear from you, and I'm flattered that you've found my blog interesting enough to continue reading. I'll take your recommendation - "Go Bear!". She constantly amazes me, and then I'm disappointed in myself for this, in that it means I continue to underestimate her. Like Carly, I can see that she understands everything (or at least pretty close - she is five, after all), and I blame my underestimation on her age, not her autism.

Farmwifetwo, you wrote "I think Carly's the norm and we're not teaching them to communicate." It would be impossible for me to agree more with this statement than I do now! I'm glad to hear that little boy is doing well with W w/ S.

I was checking out the reaction to Carly, and came across a comment on a blog that laid out the full path from PECS through augmented communications, and then stated that it was routine - but for a condition entirely unrelated to autism. The commenter wondered why this was not routine too for non-verbal autistics?

We need to make Carly's example routine, and we need to raise expectations accordingly. At least in our case we're lucky that we have the support of our IBI provider and our local public school in following this path towards full communications. We'll do what it takes to follow it. I'm glad to hear that you're moving in the same direction.

Maddy said...

Oh dearie me. I saw your URL and I thought that maybe you had updated........ah well, I suppose real life has taken over.
Cheers