"Thinking Person's Guide to Autism (TPGA) is the resource we wish we'd had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals." -TPGA Editors

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_{November 2012 Newsletter}

Has it really been two years since it all began? Yes! It seems like only yesterday when autistic self-advocates Kathryn Bjornstad-Kelly, ASAN Communications Assistant, and Corina Becker, Vice-President of Autism Women's Network first proposed a day for people on the autism spectrum to counter a Communications Shutdown on Twitter and Facebook.

Communications Shutdown was proposed by a group in Australia as a day to stop online communications in order for non-autistic people to understand the communication challenges of people on the autism spectrum; sort of like asking others to walk in the shoes of an autistic person for a day.

I've heard that what makes me different
Also makes me wrong or bad
That just because I'm different
Means that I should be sad.
But I am here to tell you
That different's not all plight
That this thing which makes me different
Is the reason why I write.
Without my brand of different
I might not have a voice unique
Rather than express myself via keyboard
I might be prone to speak.
Now, there's nothing wrong with speaking
Please do hear me through
I just happen to love typing
Each day sparks my mind anew.
Next time you might curse different
Clothe your cursing in this shawl
That it's not so bad, this different
It can be beautiful, after all.

Most awareness campaigns have little to do with supports to benefit autistic adults, and it's become increasingly difficult for many self advocates to breathe through April's superficial autism frills. Is there anything to look forward to in the month of April? 

Within the autism community, April has always been known for it's one buzz word, "awareness." Not anymore. Now you will see a new kind of confirmation which helps many in our community not feel the dread of the empty campaigns that hold little value toward helping autistics and their families. What is it? One word. ACCEPTANCE. On April 2nd, and continuing throughout the month of April, autistic advocates and their allies will be spending their time making a new kind of difference by communicating about acceptance, not tolerance and pro-neurodiversity. 

There could really be a hundred or a thousand of these, but I've decided to choose just fifteen for the sake of brevity and not imploding anyone's browser. All of these things have actually been said to Autistics, children and adults, and some of them are unfortunately very common. Some happen more often over the internet, and some happen more often in person, but they're all phrases or questions that can be incredibly hurtful. Sometimes people who say these things are well-meaning, which can make the impact even worse. Especially in those cases, people might not understand why these can be so offensive and hurtful, and occasionally insist that what they're saying is a compliment, even when it's not.

1. "So is that like being retarded?"

Factually speaking, Autistic people in many cases do not have an intellectual or cognitive disability, and many people with intellectual or cognitive disabilities are not also Autistic. There are some Autistic people who also have an intellectual or cognitive disability. Nevertheless, the word "retarded" is often very hurtful for Autistic people, as it is frequently used as an insult to dehumanize people with developmental and intellectual disabilities. The r-word is often used to express hatred for people with disabilities. Please don't use it. 

2. "You should be very proud of yourself. You seem so normal. I couldn't tell that you're Autistic."

While this is rarely said to Autistic people whose disability is very visible, it is very frequently said to Autistic people with much more invisible disability. It's insulting because it suggests that because the person doesn't appear to be disabled or doesn't fit preconceptions of what Autistic people are supposed to sound or act like, that person must therefore not have a disability or be Autistic. It also suggests that "normal" is the standard to which anyone should aspire to appear or act (and that "normalization" should be the ultimate goal of therapies or treatments for autism rather than pragmatic coping skills to navigate a world where Autistics are a minority), and therefore that it's not good to act or speak in ways commonly associated with being Autistic, even if those behaviors don't actually hurt anyone. This is very dismissive of a person's disability and experiences. 

3. "You must be very high-functioning."

Many Autistic adults take issue with the "high-functioning" and "low-functioning" labels for a variety of reasons. Some people have received both labels but at different times in their lives, and many Autistics have very uneven skill levels -- some people who might be able to articulate their ideas very well at a conference may be unable to travel alone or cook for themselves, while some people who are unable to communicate with oral speech might be able to live independently. That debate aside, this is also very dismissive of a person's individual experiences with disability. Unless you know someone very, very well, you have no way of knowing what specific adaptive functioning skills or life skills a person has or what his or her needs and challenges might be, and it's not possible to acquire that information simply by looking at a person.

Early April 2011 began with Rethinking Autism releasing their newest PSA: Autism Support Group. It was really great to see actress, and autistic advocate, Tammy Klein starring in the newly released Public Service Announcement. What an amazing message and rockin' video coming from Dana Commandatore and Michael Broderick's camp again! 

During the month of May we saw the release of one of the most widely acclaimed and honored autism documentaries, Loving Lampposts: Living Autistic. The film's director, Todd Drezner captures the diversity of autism, the community, and the many voices therein, by simultaneously shining a light on the many angles of autism and neurodiversity.

Then there were blogs, blogs and more blogs! In 2011, the autism community made an about face from years past when this year it insisted that blogging positive was the way to go for autism advocacy's future. The shining stars whom the autism community praised as 'getting it right' not only did so due to their authentic approach, but because of their honest style, and their insistence on hurting no one in the process. 

Perhaps the most buzzed about blogs are those of autistic advocate Rachel Cohen-Rottenberg's, Journeys with Autism: "Autistic Blogs" and "Positive Autism Parenting Blogs." Rachel explains, "The divide between autistics and parents can feel very deep and wide, but I’m determined to help bridge it by highlighting blogs that I feel do an excellent job of balancing the challenges of parents with respect for autistic people." 

Autism and Empathy: Dispelling Myths and Breaking Stereotypes is Rachel's other blog where she posts a variety of contributions from other bloggers as well as personally blogging herself in this richly vulnerable and honest format which lays bare the many colors of truth encompassing the autism spectrum via empathy, tolerance, and loving acceptance. 

New to the blogosphere is autistic advocate, and sex and disability blogger, Lindsey Nebeker. Lindsey's blog at Naked Brain Ink includes a recent post with an informative slideshow addressing the barriers which disabled people oftentimes face, and why sexual rights and disability advocacy matter.

In the Autism communities, the terms “high functioning” and “low functioning” are used quite a lot. However, when asked, the communities are unable to agree upon defining criteria for each. This has led me to look for a clinical description for each, specifically for Autism. However, I was only able to find the Global Assessment of Functioning (GAF), which is not Autism specific but can be applied to all diagnosis in the DSM-IV-TR. 

The GAF does not use the terms “high” or “low” functioning, but uses a numeric scale from 0 to 100, based on a person's overall and cumulative rating in social, occupational, academic and psychological functioning. While it does include communication, it is not completely based on one's ability to speak. 

I recall that some of the community definitions used speaking and some used IQ as the defining criteria for functioning. However, there seems to be problems with that. For one, there are critics of IQ test results who say that IQ tests are only for measuring learning, not for assessing ability. Researchers have been critical of IQ tests towards Autistics since a lot of tests are language and cultural reference specific, and results are inaccurate. As for using speaking as a defining criteria, it has been noted that the ability to speak does not indicate ability to communicate and articulate, nor does it accurately represent abilities in other functioning areas.

Autistic Research Participants Needed: Fleur Wiorkowski, an autistic PhD dissertation research student is seeking to bring the voices of those on the autism spectrum into the research conversation regarding higher education. 

If you are:

• - an adult on the autism spectrum
• - have attended college/university (at any time in your life - you don't have to be enrolled right now)