Not Okay: Autism Speaks Owes Kassiane Sibley More Than a Public Apology

by Kim Wombles

The number one search term for Kassiane Sibley and Autism Speaks is a pdf file that was supposed to be removed, was removed in 2012 after the autism community lit up in justified anger that a major non-profit was violating copyright as well as the author's wishes.

Whiting it out while leaving the text in the file so it would still get hits was an offensive move. Restoring the original whitewashing with a new url sometime in 2013 (according to Alyssa) is nothing short of a dick move.

Despite deep reservations about the organization, for a short time I tried to work with it in my city, since at the time they were the only way autism families got to meet each other. I felt the former president, who I had met and talked to, genuinely listened and wanted to improve the organization. I knew the people in my city who worked on the walk were genuine, real, and invested in making autistic individuals feel welcome as they were and in providing support for them and their families.

I was able to live with the cognitive dissonance for two walks. I felt the volunteering done by my family and students to make the walk happen was good work for the local community and I gained many friends in the process. I also saw some things at the paid worker level and in the organization itself that troubled me deeply. It was all about raising the most amount of money with the least amount of help from the larger organization. It was push, push, push.

I also witnessed a failure to recognize the families' concerns and interests.

I walked away from the organization quietly and when I finally did publicly announce I couldn't support it, people who had treated me like a traitor wanted to welcome me back like I'd just suddenly seen the light.

I don't like agendas nor people whose interactions with others arise out of their agenda.

I came online looking for community, for my tribe, for people who would understand my kids and me. And I was very blessed to find numerous kindred spirits, people who have become my closest friends and my strongest supporters. I found controversy and hate along the way, which I have no interest in, and it's amazing when you don't want to incite rioting and vitriol how much more supportive the people in your life are.

I know that there's a true autism community online and in the real world as I experience it every single day of my life. My facebook friends are autistic individuals, parents, the whole gamut, and with a diversity of beliefs, but the one thing we share in common is our desire to be there for each other in the good and bad times and in all the in-between.

We have thousands of people represented on this directory, from those who despise Autism Speaks to those who still support it. And I wouldn't dream of going on any of their pages and deriding them. I'm here to support at the individual and family level.

What you will no longer find on this website, though, is any link to Autism Speaks.


Over the years, their actions have varied from somewhat hopeful to downright evil. Some of their rhetoric approaches, if not reaches, hate speech. They incite fear of autistic people, and they make families think that their lives with their autistic children are doomed.

Raising autistic children, much like raising children, is not easy, but it is an amazing experience, even when it is a difficult, painful experience as our hearts break for our children's struggles.

I love my autistic children and my BAPpy husband and extended family, and I also happen to love my BAPpy self. I didn't meet people like me till I found the autism community. They made me realize I wasn't alone and that there were plenty of people who got me, got my obsessive interests, even appreciated them.

Kassiane wrote a lovely post in November that I recommend highly, that is by far the best response to Suzanne Wright's horrible op-ed.


Autism Speaks, you owe her more than a public apology for profiting off of her work without her permission, for disrespecting her as a published author with the right to say no to having her work appropriated without permission, despite making it clear she wanted her work and her name nowhere near your stuff.

You owe autistic people an apology for making them into caricatures to profit off of.

Putting Our Money Where Our Priorities Are: Our Children Deserve Better

"Good teachers are to education what education is to all other professions—the indispensable element, the sunlight and oxygen, the foundation on which everything else is built." --Lowell Milken

This is especially true when it comes to teachers for children with disabilities like autism, ADHD, and dyslexia, among other common learning and/or neurological disorders. I wouldn't be surprised if most if not all parents of special needs students haven't run up against teachers whose education was inadequate to the task, especially when are children are mainstreamed with regular education teachers. Even the National Council on Teacher Quality notes that "To ensure that our children receive a world-class education, their teachers need to be world-class. Sixty years of research and the experience of nations whose students outperform our own have proven that we can only achieve this goal by raising the bar of admission to teacher preparation programs."

According to the US Department of Labor, "[s]pecial education teachers in public schools are required to have a bachelor’s degree and a state-issued certification or license. Teachers in private schools also need a bachelor’s degree, but may not be required to have a state license or certification." Is a bachelor's degree really adequate? Even for regular education teachers? 

How much training do teachers receive for teaching? At the secondary level, education courses generally begin in earnest during the junior year, and the average semester hours needed for secondary education certification are 30 hours or around 11 courses varying from 1, 2 to 3 semester hours. The average teacher has had one 1 hour course on exceptional needs student. 

Teaching children, readying them for the future, is too important to rely on bachelor's degrees where they only spend one short class on exceptional needs students, especially given the reality that 13.1% of U.S. students are disabled.

According  to Martha L. Minnow,  "[p]roviding better training, support, and satisfaction for teachers is critical to improving both special education services and education for all students. Allocating funds to training programs, salaries, and class size reduction will help; shifting paradigms of instruction to provide continuity within the classroom for students as well as teachers will do as much."

It is imperative for our children's futures that the local, state, and federal levels of government recognize that competence in both our students and teachers requires the commitment of funds for research into best practices, to increasing teacher and staff pay and training, and to giving all students the individualized attention they need in order to succeed.

Pass it on..

  I don't know how many of our readers know about The Autism Channel-a channel devoted to all things autism. It is a FREE streaming channel that has over 27000 viewers. The line up of shows is excellent and inclusive.  Many of the shows are hosted by people on the spectrum. That's pretty wonderful-especially in a world where the voices of autistic people are often overlooked.

Right now, they are asking for help on Indiegogo. Please click on the link and learn all about the channel, the shows, the producers and what they are trying to accomplish. If you can help out-wonderful. You could also take a moment to share the Indiegogo post! You can go on over the their Facebook page-scroll down and catch the latest episode of the Autism World News.   Please just take a moment to look-and if you like what you see, spread the word, share this information.. Thanks.