My letter regarding the Congressional Autism Hearings

This is a copy of what I’ve already sent to them via this link.  By the way, huge thanks to K @ Radical Neurodivergence Speaking for the kick to the rear as a reminder to do this.

Note: This is one time where any readers do not get to agree or disagree.  These are my experiences and my experiences alone.  You write your story in the comments? That’s fine.  Just don’t dismiss mine.

To whom it may concern,

When I discovered late last week that the upcoming autism hearing would include actual autistic people and that advocates from ASAN had been invited, I was thrilled.  I was so happy that for once, people like me were being LISTENED to.  It actually moved me to tears, which isn’t something that often happens for me.  I was so ecstatic to be included in decisions made about people like me that I cried.  I thought later that of course there must be something truly *off* about that, because why shouldn’t I be included?

Most of the aforementioned hearing was focused on children, as it most often is.  That would have been fine if the focus had been on education, resources for parents that don’t scream “make this child less autistic” but instead provided real tools for said child to interact with a neurotypical world when they are not.  However, the focus was on vaccines, and I was appalled at the unscientific drivel that came from several people’s mouths. I was thankful that, for the most part, the representatives from the CDC combated the lies and fabrications being offered by others.  But that is not enough.

Finally, Eleanor Holmes Norton spoke up and asked about autistic adults.  I audibly cheered at that, that a question was being asked about us — finally!

She asked about people like me.  People who weren’t in the system, maybe who were late diagnosed.  She asked about people like me.  I was diagnosed at age 30 with autism.  I was functionally nonverbal until I was 8 years old, and I still do not have the same amount of functional language that most people my age have.

When I was a child, I was evaluated for everything under the sun.  But no one thought of autism, because I was female, and oh, yes, there are still doctors to this day who don’t believe girls have autism (seen by the fact that the ratio of diagnosed boys is four times the amount of diagnosed girls).  Also, most people just thought of me as shy, but no one ever really looked into why that is.  Why was I shy? It’s because I couldn’t process all the information being thrown at me.  The sensory issues, coupled with not understanding social rules and even processing language at the appropriate rate contributed to my overall quietness.

That’s beside the point, however, because back when I was evaluated for all these things, starting at age 7 or 8 (1988/89) and ending at age 12 with a “final” diagnosis of ADHD (1993), I was still at least one year too early to have been considered for a possible diagnosis of Asperger’s.  People still had very wrong ideas about autism back then, and those attitudes aren’t gone today, not by any means.

Sadly, back then, ADHD was no more understood than autism, and many well meaning people tried to “fix” me, in similar ways to the “curebie” camp tries to “fix” autistic people.  I was not, thankfully, submitted to bleach enemas or HBOT, but I certainly did have to do bizarre patterns on the floor, and take vitamin supplements and perform weird exercises in order to improve my visual processing.  None of it worked, and I ended up feeling more broken than anything else.

What happened to me? Gratefully, I spent most of my time in good schools with small classes — all private Christian schools.  Two of those schools had disability programs, which were mostly centered on the intellectually disabled (which I am not, by definition).  The three years I attended one specific school, however, every single one of my deficits was amplified.  I ended up leaving that particular school because I could not get through a single academic class without completely shutting down, because of sensory issues, bullying, threats, executive dysfunction. All of these things contributed to my issues, and thankfully, my parents had the wisdom to enroll me in a different school, with financial help from my maternal grandparents, who were able to make up the difference between the two schools.  That school had a fabulous disability program and the coordinator understood my issues, despite the fact that I had never been formally diagnosed with autism.  She pegged me for “other learning disorders” besides ADHD, but by that time, my parents saw no need for further evaluation.

I am a college graduate.  I somehow managed to do that all on my own, without much help from the disabilities services, but that isn’t because I wanted to.  It’s because thanks to the technological age, all of my professors had email addresses and they listened to me when I typed out an email expressing my issues with succeeding in their classes unless I was able to take my tests in the testing center, or being able to type everything I turned in vs. required to handwriting it.

Today, I am an adult with two children also on the spectrum. I am married to a person in the US Navy.  This seems like I must be completely successful, because of course, I’m a college graduate and I have a successful relationship and children, so this must be the case? Actually, no.  I still need help with some tasks that seem very basic — communicating outside of text and/or email is nearly impossible for me.  I still need help managing my money.  I hold down a part-time job, but find I am overstimulated if I work more than 15 hours in a week.

This is what an autistic adult looks like.  Yes, there are those who are more successful than I, and some who have far more needs than I do.  But this is my story and I felt the need to share it, because it seemed like there were very few people sharing what it was actually like to be autistic.


More on Autism Speaks

So, it’s been awhile since I’ve written (though my co-writer has penned a few pieces since then, to my delight).  It isn’t that I haven’t been writing, because I have.  But there have been other things on my mind, many of which I’ll touch on at a later date.

Today, though, I need to talk about Autism Speaks.  

My older child attends a school for autistic children.  It isn’t that she is incapable of being in the public school system, but our insurance covers this sort of specialized schooling, and there’s no way the public school system would have given her everything she needs to succeed.  So this is where she attends.  So far, I’ve been pretty much okay with the school.  The teachers and aides are amazing, and they have all sorts of fun events and lots of parent information sessions, too.  Overall, it’s a good school.  I did, however, notice, on my daily drop off and pick up times, that a large percentage of the 25 parents whose children attend the school support Autism Speaks.  There are puzzle pieces and Autism Speaks logos plastered all over their cars, along with a few cars who bear the information “Autistic child aboard: may not respond to verbal commands” which is one of the few things I can justify as being acceptable to place on your car in case of an accident.  

So I staged a sort of passive-aggressive protest.  I ordered magnets from Cafepress that say “Support Neurodiversity”, “Cure Ignorance, not Autism”, and one that says ASAN (which stands for the Autistic Self Advocacy Network) and bears their logo.  All three of those now adorn my car.  I’ve received one nasty look from a parent in the parking lot, but no additional commentary.

I thought all was well.  Until Monday, when I checked my daughter’s backpack and saw this:



I knew this walk was coming up.  Someone on Tumblr posted a photo of some Autism Speaks merchandise in the autism and actuallyautistic tags that were from the Florida Mall.  I’ve since discovered (obviously) that the walk is on November 10th.  And I’d already determined that I would probably protest it.  

Then, today, I received another flyer in my daughter’s backpack about the Autism Speaks walk.  And I’m just furious. I know I shouldn’t be.  I know that most of the world does not understand that Autism Speaks doesn’t speak for autistic people.  I know that even some of you who are reading here might think that is the truth, as well.  Which is why I’m adding a few links to the post so you can research this information for yourself – don’t take my word for it.

I’m not something to be fixed.  My children aren’t something to be fixed.  Stop buying the stereotypes of our lives as tragedies and support us instead.  There are a number of different organizations who ARE out there to help us, to legitimately support us.  They offer service dogs, and AAC devices for the nonspeaking among us.  They offer therapies and respite for our parents when needed (and yes, I believe this to be a need, 100%).  

Here, have some links:

ASAN’s printable pdf  “Consider the Facts”

An Autistic Speaks about Autism Speaks

Illusion of Competence: Don’t Support Autism Speaks

Illusion of Competence: Self-Advocacy during Autism Awareness Month

Autistic Hoya: Say No to Autism Speaks

Autisticic Hoya : How Autism Speaks Must Change

Mama Be Good: You can’t hate autism and expect acceptance


So what am I going to do? Well, as we speak, I am currently printing out as much information as I can to present to the school.  I haven’t decided whether I’m lucky or not that one of the people who is toward the head of the administration is a friend of my mother’s.  This may play to my advantage.  It might backfire, however.  We’ll see how well she responds.

In any case, I can’t sit back and be silent. I’ve done enough of that.  


More on Joe Scarsborough’s autism comments

First, if you haven’t read what Joe Scarsborough said earlier this week, you can read more here.

Also, some good responses, including a not-great-but-not-terrible one from Autism Speaks (and a really fabulous one from Ari Ne’eman) can be found here.

My thoughts are this – in the end, it doesn’t matter whether or not James Holmes is autistic. Maybe Joe Scarsborough is right. I don’t know. It’s certainly possible. It’s equally possible that he has a mental illness or is perfectly neurotypical. The issue for me is that none of that matters. He took the time to plan and commit a horrific crime.  Please, let’s not demonize autistic or mentally ill people and make our lives more difficult because of speculation, of preconceived notions of what it is to be autistic or mentally ill. There are many people who are both or either who manage to live their lives, who have a support system, and who aren’t dangerous to a single person. Does there need to be a lot more support for autistic people and those who are mentally ill? Oh, absolutely! I won’t doubt you there for a second. I realize (based on Scarsnorough’s non apology) that is what he meant to say, and in that case, he’s right. There isn’t a lot of support out there for us, and there should be.

None of that is what people are going to take away from this, however. They are going to hear autism=violence, which makes it all the more difficult for autistic people. It’s going to be more difficult for our voices to be heard, more difficult for us to obtain gainful employment and accommodations. The consequences of his careless words are far reaching.

I wish he hadn’t opened his mouth.

Why I am Against Autism Speaks

Autism Speaks is by far the most well-known charity that exists in the USA regarding autism. Just because they have the most media coverage and celebrity support does not mean they are a good organization.

  • Autism Speaks does not have a single autistic member on their board.
  • Autism Speaks only spends 4% of their budget on “family services”.
  • The majority of Autism Speaks’ money goes toward research, and the majority of that research is to find a way to rid the world of autism, and thus, autistics.
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel but can still be found elsewhere.
  • Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film comparing autism to cancer, AIDS, and blaming autism as the reason why marriages break up.

In short, Autism Speaks makes it much harder for those of us who have autism to be taken seriously. Autism is considered to be a child’s “disease” (which isn’t really accurate at all, as a disorder and disease are two different things, but Autism Speaks treats it as a disease), and you will often hear people say “where are all the adult autistics?” Well, we’re right here in front of you. We may have been misdiagnosed with learning disorders, mental retardation (now referred to as intellectual disability) and other mental illnesses when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now (there are also a few variants of autism or autism-like disorders that I don’t mention here, like Rett’s, but these are far less common). We vary in where we fall on the spectrum. Don’t make assumptions about us because we can use a computer.

For further reading, here are a few resources about Autism Speaks:

Why Autism Speaks is No Good for Autistics.

Autism Speaks Does Not Speak for Me.

I’m Autistic, But Autism Speaks Doesn’t Speak for Me.

An Autistic Speaks about Autism Speaks.

Chart regarding Autism Speaks’ funding allocations

ASAN flyer about Autism Speaks