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.

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12 thoughts on “My letter regarding the Congressional Autism Hearings

  1. I wish that those representing autistics would stop demonizing the “curebie” camp, which I am glad to be in. I am diagnosed on the spectrum, suffer from numerous impairments, and lack necessary skills, so I don’t want rigorous research into causes and curative treatment to be undermined.

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    1. Honestly, then, you need to send your own letter. But with only 1% of the research going toward how to improve things for autistic adults, that isn’t enough.

      I have never ever been against finding treatments for people who do feel severely affected by their symptoms and wish to lessen them. That isn’t what the curebie camp is about, however. The curebie camp is about trying to find the “normal” child inside of the autistic one, by stripping away a child’s autism. That isn’t possible, and the ways that the curebie camp DOES this is downright abusive and dangerous.

      I do believe that research extensively into a cure, however, is walking a very dangerous line. There are already autistic people who are forced into therapies, treatments, etc. that they don’t want, because people believe that being autistic means that they do not deserve to have an opinion about what happens to them. That may not affect you, but it does affect some people, and I’m not okay with an actual cure, a rewiring of a person’s brain because of that. Because many of us will not have a choice. It will be placed in the hands of caretakers, and legislators and social workers, and those people already abuse people like you and me.

      I respect your opinion, and by all means, submit your own letter. But this is mine, and I stand 100% behind it. There needs to be more understanding and tools for the people here today, both educationally, medically, and in regards to job training and support. I’m not going to deny that so that we can do what — give half a percent more research toward a cure when we already have nearly 99% going that way? No thanks.

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      1. Cure will improve things for autistic adults who would otherwise have impairments. I wanted a life beyond relying on others to care for and complete things for me. I am not able to reliably work or do many other things due to my disabilities. Your characterization of cure isn’t true. Rewiring has nothing to do with this. I have been forced into a disability I didn’t want. Removing funds from cure research won’t do much to fund services, as money for services is needed in much larger amounts than amounts that fund research.

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      2. You no more know what the future holds for me than I know what the future holds for you. Speaking in absolutes regarding what a cure will and will not do is unproductive. However, I can tell you what abuses are being administered to autistic people like me now, without an FDA approved cure. I can tell you treatments autistic people are forced into. I can tell you that there are people out there who see autistic adults as something other than children but not quite “real” adults. To pretend that a cure, if it did exist, would be optional for all is laughable. If you don’t believe that a cure would rewire the autistic brain, feel free to read Emily Willingham’s thoughts on it (she’s an actual scientist) or Yesthattoo’s (at blogspot). I am all for treatment for people who want it. But to pretend like the 99% of funding that is being directed is not enough is gross, and if you don’t mind me saying, downright selfish.

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      3. I didn’t speak in absolutes. Cure is a goal. I didn’t say the funding wasn’t enough. Its funding doesn’t have to be stopped to fund other things. I’m not trying to prevent funding of other things. I didn’t condone fake dangerous treatments, and they’re not comparable. Impairment itself isn’t a choice. It has been forced due to circumstances, even though it is unwanted. Cure would be available for those who want it to reverse/prevent their impairments. “Rewiring” of a brain is not a scientific term. The science on autism doesn’t show that the impairments within autism are due to a problematic pattern of wiring. It has lots to do with connectivity within the brain.

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      4. If you think a cure wouldn’t be mandatory for many, I’m sorry, but you’re deluding yourself. Again, I never disapproved of treatments that would help with troubling symptoms for related conditions – overwhelming sensory integration, seizures, digestive issues. But that is not a cure. A cure, as we understand it, isn’t something that will be available anytime soon. I don’t anticipate it will be possible in my lifetime, to be quite honest, because I think it’s more complicated than you think it is. Science, to the best of my knowledge, has its limits and it will be very difficult to take something which permeates the way the brain works in its entirety and completely change that. You may not use the word “rewire”, but that is, indeed where it is. You are arguing for more funding? Why not just take it away from the pseudoscience bull that is pervasive in the curebie community? Direct it away from proving (or rather, disproving for the umpteenth time) that vaccines cause autism. The income that Autism Speaks gains in a year is extraordinary. Stop the “autism is a tragedy” PSAs, stop trying to find a prenatal test for autism, and help people who are here already, which CAN lead to helping people who will be autistic in the future. How is that asking for too much?

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      5. I don’t think one should choose and limit which treatments others may get. Again, disability is forced and not chosen. You can’t prove that cure will be mandatory, but some want to make it mandatory that curative treatments won’t be available, which would force many to keep suffering the consequences of severe impairment. Cure needing time to be made doesn’t make it less legitimate of a goal. Science and the technology that enables it are continually advancing. The things they do today would have been considered sci-fi decades ago. Cure isn’t a complete change of all aspects of the brain. “Rewiring” has not been concretely defined, so arguing against that is a strawman. I am arguing for funding for what you want. You don’t have to remove funding from real biomedical research to do that. I don’t know why that keeps getting implied. Autism Speaks wastes a lot of money, but that isn’t an excuse to delegitimize cure research, which has been defamed by saying it’s for prenatal testing.

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      6. I’m done engaging with someone who has a serious case of internalized ableism, clearly has a lack of understanding about the real world in which we live and how it operates and has yet to produce a shred of evidence about real biomedical treatments that are actually helpful and not harmful. I frankly don’t have the time or energy to argue vague concepts such you refuse to define.

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  2. “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.”

    You got patterning? I read about it in the book No Time for Jello. That was a weird theory, wasn’t it?

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