Torn

I’m really torn about my advocacy work. I know many people have bought into a certain organization’s legitimacy as “spokesmen” for Autistics. I don’t want to offend those people as I’ve seen so many different attitudes and different treatment approaches in the last 18 years that I’m of the opinion “if it doesn’t hurt your kid and you’re ok with it, have at it.” So, not on board with bleach as a cure/treatment. If you want to try acupuncture, diet, essential oils…that’s your call.

But when  you throw your support behind an organization that has no Autistics in leadership positions, paints totally negative pictures of life with Autism and consistently ignores Autistic voices, I get a bit peeved.  When you pretend that Autistics aren’t capable of understanding what you’re saying, you hurt the very people you claim to be helping. When you send an organization’s leadership to the Vatican (imagine how much therapy/respite care could have been paid for instead) only to have the person describe how there is no hope without a “cure,” what message are you sending to both Autistics and their loved ones about their lives.

Behavior is communication. What does yours say about you?

https://www.facebook.com/ColorTheWorldAutism

https://www.facebook.com/thoughtsfromafemaleaspie

https://www.facebook.com/pages/Diary-of-a-Mom/310066991936

https://www.facebook.com/pages/Invisible-Strings/639580906071399

It’s Cool

This week brought several stories about Autistics into the news. I’ve read so many comments on social media about Autism that my head hurts. Why? Because people are arguing and judging things they don’t understand. While none of my contacts has said anything to me, I wonder if some of the commentary applies to me.

Jerry Seinfield stated in an interview he thought he might be Autistic. This has sparked huge debates about diagnosis and “attention seeking” behaviors. Some people seem to feel that the only “true” Autistics are those who are diagnosed by medical professionals and have severe impacts in their lives. Um, yeah. It’s called a spectrum for a reason.

I’d also like to point out that until recently (about the last 15 years), Autism awareness was pretty low. Unless you had classic Autism, with all the severe behaviors associated with classic Autism, you weren’t Autistic. Many people over the age of 35 are just now figuring out why their lives are what they are and it isn’t because of more stringent or even looser diagnostic guidelines. It’s because we’re becoming more aware.

Some of the commentary by non-Autistic “experts” indicates that people who self diagnose are wrong and trying to grab the spotlight. One BCBA flat-out said it should be illegal to self-diagnose. Illegal? I self-diagnose all kinds of things including colds, stomach bugs and other maladies. Thanks to the information that is readily available 24/7/365, people guess at their conditions all the time. Are they wrong? Are they doing something illegal? I think not.

John Elder Robinson is recognized as an Autism expert. He also has Autism. Mr. Robinson was the lone Autistic voice in an organization supposedly dedicated to helping Autistic people. He left that organization in 2013 because of their stance that Autism needed to be cured. Well, and the fact that the big line item in their budget is advertising, not helping Autistics.

In a piece on the blog Psychology Today, Mr. Robinson elaborates on the polarization of the Autism Community. Read the full article here: http://www.psychologytoday.com/blog/my-life-aspergers/201411/jerry-seinfeld-and-autism

Assume you actually clicked out to the article, wouldn’t it be nice if we could just embrace people and not rip them apart? I’d love to know why people are so suspicious of motives when public figures share information. Then I think about me. Here I am, writing this arguably small blog. I’ve outed myself on several topics. I have received comments like “I never would have guessed!” What is my motive? To help people become more aware.

So, there you have it. The more you know, the broader your view of the world. It’s so easy to isolate ourselves. Quick, name 5 of your immediate neighbors! I know I can’t.

It’s cool. We all are busy with our lives. My passions are not your passions. I appreciate people taking the time to read this little blog. I hope you’ll learn something. I hope you won’t judge me too harshly. Most of all, I hope you’ll understand that people are people…deserving respect for their journeys even if you don’t understand their path.