What follows is a letter I sent to the Health news desk at the Huffington Post. There may be updates to this blog post if there are updates to the case in question.
I am the Director of a human rights and disability rights firm specializing in autism called Autistic Reality. You can find it here: http://www.nothingaboutuswithoutus.net/ I have autism myself, and within the last few days I joined a social network that claims to be in the best interests of people with autism. There are even some other autistic members. It is called My Autism Team. You can find it here: https://www.myautismteam.com/
Earlier today, I found that I could not access the website. I then found I had received an email. Here it is, inside the brackets:
Thank you for contacting MyAutismTeam!
Unfortunately at this time, only the parents of children on the autism spectrum are allowed on our site. While we appreciate your interest in our site and your enthusiasm to help the autism community, the privacy of our members needs to be maintained so your profile has been removed.
I was absolutely astounded at the blatant denial in letting the autistic community represent themselves and their own concerns. I returned their email which you will find here, inside the brackets:
I find this policy to be quite bigoted. Are you saying that if there were a community for folks who are black, only white caretakers would be allowed? Are you saying that because I have autism, my judgment is automatically impaired? That I am less than a complete person? You mentioned that protecting privacy is the reason why you took me off the site. Are autistic people inherently not trustworthy?
So let me get this straight: your websites policy is that we do not have the right to self-determination, that we are not trustworthy, that all of our decisions have to be made for us, and that we are lesser beings? Great to know!
As you say, "Best",
Without Fear: The First Autistic Superhero
Je suis prest
(Translation: I am ready)
—Motto of Clan Fraser of Lovat]
The website is positively littered by people who say they represent the best interests of the autistic community. Some of them even say that they know better than the autistic people in their charge. Would we allow only people in North Carolina to govern the United States? I thought that would make just about as much sense. We are allowing a group that is limited in their scope to represent and in some cases even make decisions for a group which they do not represent. I have a bachelors in political science, a Masters in disability studies will be awarded to me in June, and I have 20+ years of experience out of my 29 year life in disability advocacy and self-advocacy. I believe in letting parents, educators and caretakers have their valid say in our affairs. However, to absolutely ban us from the website makes me beyond furious.
I hope that you can get a decent story out of this. I really love your publication. It is an issue regarding basic human rights.
Without Fear: The First Autistic Superhero
Update 1: It looks like they are tied to Autism Speaks. If this is true, then they really are going out of their way to discriminate. Lovely.
Update 2: Yup. They are run by Autism Speaks...which is refusing to let us speak.
Update 3: A woman posted this to my Facebook page (in brackets):
[Alec, there are many forums for "parents only". You could call it discrimination against "non-parents", but "non-parents" are not a protected class, so it's within their rights.
I find it admirable that you would want to offer your help and experience to parents of kids on the spectrum. If I were a parent of a kid with autism I'd be thrilled to learn from someone like you.
With that said, I think you took it too personally. That looks like a standard letter they send out to everyone who doesn't meet their criteria for membership. If you sent them a letter explaining what you want to use their website for I'm sure they would gladly oblige.]
She is right that non-parents are not a protected group...when you are talking about something that pertains solely to them. However, MyAutismTeam is a site dedicated towards running the lives of people with autism. It has many categories to list yourself under. AUTISTIC INDIVIDUAL IS NOT ONE OF THEM!!!! Remember "no taxation without representation"? Not about, without. Nothing about us without us. You seek to govern us and make decisions for us. In this exact matter, the fourteenth amendment to the constitution says that you CANNOT exclude us if you receive public monies. Autism Speaks receives boatloads. This is unconstitutional. Either incorporate privately, or let us in. There are no other options.
This blog posting is both the personal opinion of Alec Frazier, and the professional policy of his advocacy firm, Autistic Reality. If you oppose it, please screen grab it! We are very proud of this opinion!