Monday, February 25, 2013

AutismExperts: Transcript and Summary of TweetChat

Unstrange Mind has a summary of last night's TweetChat, hosted by Autism Women's Network

"Sunday evening, I attended an excellent tweetchat — a conference held through Twitter — on the topic of Autism Experts. The chat was hosted by the Autism Women’s Network and featured author and activist Paula C. Durbin-Westby. Paula was there to talk about her newest project, #AutismExperts." Read more here:

Saturday, February 23, 2013

#AutismExperts TweetChat with Autism Women's Network Feb. 24

Guest: Paula C. Durbin-Westby will discuss #AutismExperts, a new initiative she's working on   which highlights the real autism experts, Autistic people. Sunday February 24th 7pm EST, 6pm CST, 5pm MST, 4pm PST (12am UK, 11am Feb. 25th in Melbourne, Australia). Hosted by Sharon da Vanport and Ibby Anderson-Grace.

Join the conversation! After you sign in to Twitter click on the following link to go to AWN's Tweetchat forum: -- Click sign in then click authorize app. Once signed in, turn the speed down 5-6 seconds during the chat.

(AWN Twitter: @Autism_Women --

NEW: Transcript for the entire TweetChat is here, thanks to Sharon da Vanport.

Thursday, February 21, 2013

Autism Experts: "Perseveration" Is a Learning Style

Many Autistic Autism Experts are joining the chorus of voices that caution strongly against trying to dissuade Autistics from what are variously called "perseverations," "special interests," "obsessions," and other names. 

Evidence* is mounting that these intense focuses on areas of interest are part and parcel of Autistic learning styles. 

Perseveration can be, but is not limited to, when we get really really really interested in something. It is often considered an impairment, and can have its challenges, but on the other hand, often it is a way that we learn, by focusing on one thing to the exclusion of others, or focusing on "parts" of things, aka details, or learning as much as we can about something, or not being able to STOP learning about something.

Links to blog entries and articles follow:

"Today, I tell you that you do not have to be afraid. You do not have to redirect your child or try to hide all the strings in your house. Perserveration is a learning style. "

"I never know when the next obsession will happen but during that time, for as long as it takes, I’ll learn everything I can until I’ve learnt enough."

Related articles about "perseveration" and some of its POSITIVE uses can be found here:

*Evidence, as defined for purposes of this post and for much of this blog, is:

Shared experience of many Autistics, whether or not supported by research utilizing the "scientific method," randomized controlled studies, or other peer-reviewed journal articles, (to name a few). See the Evidence page on the tabs above for more about this. Autistic experience, especially when shared and reported by many Autistics, is evidence.

Friday, February 15, 2013

Autism Experts: Science Writing- Ten Things to Consider

This blog post is directed toward researchers and scientists (and others) who write about autism. And, it is also directed toward the general population who read such writings.

Writing about autism science? 10 things

Willingham's list of ten things starts with this all-important consideration:

"Interview an autistic person for insight whenever possible. If you need suggestions for leads, feel free to contact me. If you were writing a piece about any other human condition, would you talk only to parents or relatives of people with that condition if the people who have it could communicate for themselves?"

Read the rest of her ten points at the link above.

Note: The "study" below violates many of the considerations Willingham outlines. Readers should stop to think for themselves how likely it is that introducing bacteria into Autistic people will elicit a "cure." Please note that a "reduction of symptoms" in mice does not say much about autism in humans, and it really does not say much about autism at all, since the researchers are using stereotypes of Autistic behavior to come to their conclusions. Oddly, they give the mice the flu, then note that the mic have different bacteria in their "gut." Really. I am typically less social when I have the flu, too.

Autism Experts: Autism and Inflammation Studies Debunked

Science writer Emily Willingham has painstakenly and repeatedly debunked questionable assertions that autism is caused by (and, in a variant, "cured" by introducing) bacteria. She also debunks the dangerous myths behind current "research" that introduced worm eggs (with the subsequent hatching of actual worms) into Autistic children.

Autism, immunity, inflammation, and the New York Times

One thing to note about all these questionable studies is that they often come with the rhetoric of "leaky gut." Rather than using more scientific terminology, these studies posit a "gut" that leaks, and then blame the entire range of Autistic characteristics and traits on this supposed fault in the gut. 

The hygiene hypothesis, when examined closely, does not contain even a kernel of fact. It is premised on nostalgia for the "good old days" when, presumably, we were somehow "germier," maybe because we were working on farms or getting dirt under our nails, or drinking unpasteurized milk (even though some people have a strong belief in a "milk causes autism" theory.)

Please read Willingham's excellent article before you jump on the bandwagon and feed bacteria, worm eggs, or whatnot to your kids or yourself.

A post by Autism Expert Paula C. Durbin-Westby is here:

Albert Einstein College "Treating" Autism with WORMS?

Autism Experts: Autistics as Researchers- Expertise Recognized

One of the most important research initiatives involving Autism Experts, that is, Autistics, is the Academic Autistic Spectrum Partnership in Research and Education, AASPIRE. 

AASPIRE's mission is concrete, rather than speculation-focused. Team members actually do work together as equals (I participated on the team for a short while and observed the process that was developed to ensure that all members have access to information in ways that they can understand, sensitive attention to communication differences between members, and a focus research projects that will make a difference in people's lives). AASPIRE's mission:

-To encourage the inclusion of people on the autism spectrum in matters which directly affect them.
-To include people on the autism spectrum as equal partners in research about the autism spectrum.
-To answer research questions that are considered relevant by the autistic community.
-To use research findings to effect positive change for people on the spectrum

From AASPIRE's website: "The Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autism spectrum. Our partnership adheres to the principles of Community Based Participatory Research (CBPR or PAR), whereby academics and community members serve as equal partners throughout the research process."

In addition, "...there has been little focus on how to improve the lives of adults on the autism spectrum. Adults on the spectrum are not usually included as resources or partners in autism research, despite having a wealth of information, experience, insight, and skills to offer."

To learn more about AASPIRE, and how you might get involved, please go to the AASPIRE website.

Sunday, February 10, 2013

Autism Experts Recommended by Parents

Many parents are beginning to realize that the expertise they seek is more often than not found in the adult Autistic community (with some new and important writings coming from Autistic children and teens!)

Quotes are below the links.

"My last post helped me to meet this fabulous group of autistic adults.  And you will be hearing a lot about what they say, and what they think when I have their permissions to share.

THEY, the adult autistic community, are the experts.  And THEY should have everything to do with developing therapies and education for autistic children.
If you’ve never been afforded the opportunity or worse taken the opportunity to get to know an autistic adult, this might seem outlandish to you.
If it does, YOU are so DEAD WRONG."

"This woman articulated so many of my feelings about Evie’s autism–giving them credibility and reason coming from a woman who has autism."

"When I speak with autism parents I hear a lot of questions about the how to handle certain traits or behaviors of their autistic children. Here is my attempt to help parents find answers to some of those questions by reading the words of autistic authors speaking about them."

"Let's be clear.  This research is not studying anxiety in autistic children.  It is studying parents' perspectives of anxiety in autistic children.  That's different. <>  If they want to know what parents think are the behaviors caused by anxiety, then ask parents. ,.<> But do not claim you are developing tools for measuring anxiety in autistic children."

"4. Find autistic adults to talk to or to read their writing. 

One of the best ways I've learned a more complete understanding of autistic lives is by reading the works of autistic persons, by meeting them in person, or by communicating with them on the internet. Talk to autistic persons.  Read what they've written  Get to know them."

"And then…  what happened?  What changed?  Everything.  I began to question the “truth” about autism.  I began to question the dogma.  I began to question the “facts.”  It was inevitable, I suppose when you read as much as I do.  But the single biggest change occurred because I found Autistic Adults like E." 

Resource List from Mama Be Good