Testimonial from Paula Durbin Westby


#BoycottAutismSpeaks-Autism Acceptance Day Support


“Many people have a negative reaction to criticism of Autism Speaks.  These are the testimonials of people that have been hurt by the work that Autism Speaks does in the name of good.  Reading personal accounts of people that live with the repercussions of the negativity, fear mongering, and hate will help you to gain an understanding of this movement.” 

This is my testimonial, which goes back to June 2006. 

Autism Acceptance Day got started to counter negative rhetoric in April. Autism “Awareness” at that time (2011) was largely geared toward “doom and gloom” about autism. Much of that negativity was put out by Autism Speaks, the largest fundraising organization having to do with autism. Autism Acceptance Day will be in its 4th year in 2014, and many organizations and people have signed on to the concept. 

My personal story about not liking Autism Speaks starts in June 2006. That summer, I was indexing a book and came across the term “PDD-NOS.” I did not know what the term meant, so looked it up. The first site I checked was a wikipedia site that simply stated that PDD-NOS meant “pervasive developmental disorder- not otherwise specified.” OK, I had my definition, and that was all I needed for my work. I was about to close the link when I saw another hyperlink that looked intriguing. I clicked on that and read a definition of autism. Because the definition described me exactly, and because I did not understand what the BIG DEAL was, since it was… just a description of what I was like (!), I started reading a bit more, mostly trying to find out why people thought a person like me was so problematic.

I immediately (of course) found Autism Speaks. At that time they had a “In Their Own Words” column, which was partly by Autistics and partly by parents and others. The article I saw that first day was by a young man, aged 17 I think, who decried his autism (Asperger’s) and, although he said a few positive things about himself, spent a lot of time regretting his characteristics (which he may have called “symptoms”).

One of the things he regretted was his use of “big words.” He called his Asperger’s “nefarious” and then commented that using words like “nefarious” was part of what was problematic about himself.

That comment stopped me in my tracks. I will come back to why, but first I will say that I immediately started looking at the rest of the Autism Speaks site and was dismayed to see that it was mostly negative, dire statistics, not only about “classic autism,” but about “high-functioning autism.” Yes, I just used a functioning label, but this was how I was looking at it on the VERY FIRST DAY I had ever done any reading about autism. So… Autism Speaks did not seem to “like” people like me, or like the young man with the “nefarious Asperger’s.” I found some other entries by Autistic people, mostly about how hard it was to be Autistic, which is OK as there certainly are difficulties or autism would not be a disability, but I found nothing much in the way of positive self-assessments. I would think some good could be posted with the “bad.” Most of the articles were by parents and others, not by Autistics. I went back to the first article and re-read it. The young man seemed likeable enough, and like maybe someone I would have gravitated toward when I was a teen. He said that having a big CD collection and talking about his CDs was part of his “disorder.” I thought he seemed like a teenager talking about his “record collection” (we had *records* when I was a teen, and we all talked about them, and not just me, but all my friends). What was Autism Speaks doing, labeling really rather typical, even if a bit more intense, teenage characteristics and interests as “disordered?”

I also was quite alarmed by the idea that using “big words” was a problem. I am hyperlexic, which means I started reading without being taught, at a very young age. I was reading on a “gifted third grade level” when I was four, according to one assessment I had done as an adult. Words, words, words, words. I am now an indexer. I read books for money. I write indexes. Words! Books! Words! I had been teased as a child and teen for “using big words.” Other kids thought I was doing it to “impress” people, including the teacher. No, those were just the words that came to mind. In about 8th grade, I started doing a thing – thinking of a “big word,” then cycling through a list of synonyms in my mind so that I could find a “littler word” to substitute so that I would not get teased. I did this so often that it became second nature and I did it almost without thinking, and was still doing it sometimes, and had done so for decades.

Then my child was born. All the baby and young child picture books used “controlled vocabulary,” yet I knew from reading (and I read a lot, with my indexing!) that people had not always used controlled vocabularies, and that children in some earlier eras and situations had quite large vocabularies, and that children nowadays were at least as innately capable of learning many words as they had been in the past. I also noticed that I was doing the same thing with my child, cycling through and finding little teeny words. And then…. I realized what I was doing. I was keeping the richness and variety of my native (word-based native) language from my own child. I did not want to do that. I had to force myself to use ALL THE WORDS. It was hard at first. What I did with him was to use whatever my “big word” was that came to mind and then to provide a definition, so that sentences like “That just exacerbated the situation, which means that made it really hard!” were a standard sentence construction in our home. I made this change when my child was about a year old.

Back to 2006. I was being confronted with writings by people like me, on a site that was about curing a preventing autism, who did not like the way they were because someone had told them it was part of a “disorder” and not good! I stopped liking Autism Speaks on that same day. “Speaks” seemed sort of odd for an organization that was complaining about using words! I had worked too hard in this life to like myself for who I am (something I think every human being has a basic right to do) to “go back.” My language use was my business, not anyone else’s “symptom.”

I went back to the original page where I had found the Autism Speaks link. I found another link to “Autistic Rights Movement” on wikipedia (somewhat changed from 2006).http://en.wikipedia.org/wiki/Autism_rights_movement At that point I found a home, for a lot of things about me, and from that point forward, I have always been ACCEPTING OF AUTISM. ALL autism, by the way, not just “high functioning,” whatever that means. (It usually means “we are separating you out- you don’t get to “talk” about autism— but we do, even though we are evenfurther away from being Autistic than you are!”) I found Autism Network International and autistics.org and some online groups, and that was the start of me moving even further away from teasing, being told not to use “big words,” and all that.

Currently the Autism Speaks “In Their Own Words” is archived. The last page ends in 2010, although what I read was posted in 2006. Maybe they have retired all the posts before 2010. The link (linked through donotlink.com, is here: http:/blog.autismspeaks.org/category/in-their-own-words/page/18/

Also currently, Autism Speaks has started a “new” blog, called “In Our Own Words,” which is going to be by Autistic people (and which will be edited by Autism Speaks for “political correctness,” which any organization would do, of course). The other “In Their Own Words” had this to say about their selection process:  If you have a story you wish to share about your personal experience with autism, please send it to <>. Autism Speaks reserves the right to edit contributions for space, style and contentI noted the content caveat (which means warning….) in 2006. It was a red flag for me, considering the kinds of things that were being posted- “devastating disorder” was the phrase of the day back then. The first article is someone who helped a mom feel more comfortable about her child’s autism. That is a good thing, but Autistics do that all the time, and Autism Speaks has take way too much in terms of money, time, energy, lost opportunities, and the rest, from Autistic people and those who care about them.

So, in a way, Autism Speaks has ended up being the impetus for Autism Acceptance Day. A$ has even tried to co-opt the words “autism acceptance” (which phrase has been around since before Autism Acceptance Day), but without much success and with very little convincing that they are about “acceptance.” 

Please add your story to  Boycott Autism Speaks testimonial page, and join the boycott! Add your name to the petition (below) and contact Autism Speaks’ sponsors. We are making a difference with the sponsors, already. Several of them have said they will consider our position. Even a bit of education can make a difference.




“Twitter Bomb” December 9, 2013. Use the hashtag#BoycottAutismSpeaks and @boycott_AS


2 thoughts on “Testimonial from Paula Durbin Westby

  1. Paula C. Durbin-Westby

    I always end up adding things to my blog entries. I added two points that I think are important, that I will summarize here: First, “Note that I have boycotted Toys R Us since 2006. I have a child who is 11. That’s a lot of toys…” And, also very important, “My initial reaction that June day, to finding out I was Autistic, was- happiness! I wanted to tell everyone! Not “Now I know what is ‘wrong’ with me,” but “Now I know why I am the way I am! It’s pretty cool!” After reading the Autism Speaks page, I actually got frightened. Would I be discriminated against, laughed at even more? “…”Fear and disease-based rhetorics dominated at that time, and the leader of the pack was Autism Speaks, with its funding base and media access. Fear-based rhetoric still dominates, whenever Autism Speaks is involved, such as Suzanne Wright’s infamous “This is Autism” post”..” In a world where disability was spoken of respectfully and accurately, much could be done toward helping people who are Autistic and disabled, without harming us as a “side-effect.” ” More at http://autismacceptanceday.blogspot.com/2013/12/boycottautismspeaks-autism-acceptance.html

  2. Pingback: On “big words” | ischemgeek

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