Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

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Autism Speaks Hasn’t Really Changed Anything


A millipede at the Antietam Battlefield. It’s coming right at you! Photograph copyright 2016 by Sparrow Rose Jones.

You can’t have missed it. It’s everywhere you look: the announcement that Autism Speaks has dropped the word “cure” from its mission statement. It’s being lauded as a great sea change in the organization’s approach to autism and a sign that Autism Speaks is finally starting to listen to the activists who have rejected the cure mentality for so long and called on Autism Speaks to reject it, too.

Except it’s not a sea change. It’s not a change at all. Autism Speaks hasn’t changed a damned thing except their wording.

Look at their  mission statement. The cure mindset is still front and center:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

from: https://www.autismspeaks.org/about-us/mission

Allow me to unpack this shining new mission statement.

Autism Speaks is now promoting solutions instead of cures. Except that one of their definitions of solutions is not only synonymous with what “cure” actually meant, it is even more chilling with the new wording. But I’m getting ahead of myself; you’ll see what I mean further on in this essay.

“Cure” was code language — something called a “dog whistle” because it’s language meant to only be truly understood by certain people just as dog whistles can only be heard by certain ears.

To the general population, “cure” sounds great. When you hear the word cure, you naturally think of an alleviation of suffering. You think of a cure for cancer. You think of the cure for the common cold. You think about kind-hearted, humanitarian scientists coming up with ways to soothe the discomfort and fend off death. Who could possibly be against a cure, right? Cures are good and make people happier and healthier.

But what does a cure for autism look like?

Autism is a difference in the structure and function of the brain. All the behavioral differences you see, all the perception differences we experience are informed by differences in neurological structure and function. The brain is the seat of our individual human identities. Autism is the ownership of an autistic brain. Curing autism would mean changing our brains.

Maybe it could be done carefully and someone could cure the pain and nausea I experience when I hear certain sounds without removing the musical parts of my brain. Maybe I could be cured so that I could listen to a soprano singing without my whole body trembling in pain but would I still have been able to learn to read sheet music at age four and play Chopin sonatas on the piano and compose and record my own music? Maybe.

Maybe I could be carefully and precisely cured so that I don’t regularly lose the ability to speak. It would be nice to not have to type to communicate sometimes. People aren’t very patient when I can only communicate by typing. They talk over me, they ignore what I tell them, they ask me five more questions while I’m still typing the answer to their first question, overloading and overwhelming me. Maybe I could be cured so that I never lose speech again without removing the parts of my brain that make me a skilled writer. I am as skilled with the written word as I am because it is my first language and the spoken word is my second language. Maybe I could be cured so that I could speak all the time, reliably, without losing my writing skills. Who would I be if I weren’t a writer? It is such a deep part of my personal identity, crafting written words. Anyone who has met me, heard me present, watched my YouTube videos knows that I speak well but I write so much better than I speak. Maybe my intermittent mutism could be cured without destroying my writing. Maybe.

You can see where I am leading you, right? There really isn’t a cure for autism. Once my brain was wired this way, my life trajectory was always going to be divergent from the bulk of life trajectories around me. Once my brain was wired in an autistic configuration, a cure would mean untangling my neurons and pasting them back together differently. Curing my autism would quite literally mean giving me a different brain. Giving me a different brain would quite literally mean erasing who I am. A “cure” for a living Autistic person is impossible because once you make such major changes to a person’s brain, you haven’t cured them; you’ve removed them and replaced them with a different person who might (or might not) share their memories. If you enjoy reading science fiction, read Elizabeth Moon’s novel, The Speed of Dark, for an eerily realistic example of what a cure for autism might look like.

So now I’m hearing some people praising Autism Speaks for removing the word “cure” from their mission statement, but has anything really changed? Let’s look at their new word, “solution,” adn see why it’s much more frightening to me than “cure.”

“Autism Speaks is dedicated to promoting solutions” …. let’s enumerate those solution goals:

1. across the spectrum
2. throughout the lifespan
3. for the needs of individuals with autism
4. for their families
5. through advocacy and support
6. increasing understanding and acceptance of autism spectrum disorder
7. advancing research into causes for autism spectrum disorder and related conditions
8. advancing research into better interventions for autism spectrum disorder and related conditions

And, for comparison, here is the old mission statement:

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder.”

1. Across the Spectrum

If these words mean what are claimed, this would be a sea change worthy of advertising. I am suspicious of all the focus on the removal of the word “cure” when “across the spectrum” is a much bigger change. Why is no one talking about this?

For years, those of us Autistics who could communicate using words, whether spoken or typed, were told to sit down and shut up. Autism Speaks wasn’t talking about us, we were told. They were only talking about those ‘poor unfortunates’ who could not speak for themselves. Sure, we got counted whenever Autism Speaks wanted to share the huge numbers of millions of Autistics they needed funding to help. They wanted us to be counted as warm bodies for fund-raising purposes. They just wanted us to be silent warm bodies. Shut up, Autistics, you’re getting in the way of us helping.

If Autism Speaks is truly committed to offering solutions “across the spectrum,” they need to look at how many of us are homeless and hungry. They need to look at how many of us are slipping through the services cracks because there’s nothing out there for us. They need to look at holding universities accountable for the accommodations Autistic students need to succeed and thrive in an academic setting. There are massive unmet needs among the Autistics that Autism Speaks has traditionally told to shut up. If we really are part of their mission statement now, are they going to make good on that? Or are those just words designed to shut us up yet again. “There, we mentioned you in our mission statement. Now sit down and shut up.”

Put your money where your mouth is, Autism Speaks. And by that, I don’t mean the $1,167,786 spent on catering.1

Autism Speaks likes to make you think they are giving a lot of direct financial support to Autistic people and their families by rolling several categories together in their pie charts. They told us they spent $24 million on “family services, awareness, and advocacy”2 because that hides the specifics.

It hides the actual amount that went to family services: $4.6 million

Versus the amount that went to advertising: $52 million

It hides how much of that advertising, “awareness and advocacy” was spent on promoting programs like MSSNG that teach the world that Autistics are “missing pieces.”  Notice what they chose to leave out of the word “missing”: We Autistics are missing “I” – identity, humanity, self.

And what are the missing pieces that the MSSNG is discovering? Autism Speaks is sequencing thousands of genomes. “The best research minds in the world are going to mine this database of DNA so we can uncover and understand the various subtypes of autism. Then we can get to work developing customized treatments and therapies so we can improve the quality of life for so many people who need help.” – Liz Feld, President, Autism Speaks.3

Customized treatments and therapies? This would be great news for everyone, Autistic or not, if that’s what they’re actually doing. One-third of Autistics have epilepsy, so people with epilepsy would rejoice because those customized treatments would help them, too. As many as three-quarters of Autistics have clinically significant sleep disorders and that means the 25% of the general population with sleep disorders would rejoice because those customized treatments would help them, too. If MSSNG is really doing what it claims to be doing, the entire world should rejoice because the things we Autistics suffer with are not autism-exclusive things. Every treatment or therapy customized to our genetics will help thousands of non-autistic people who suffer those same things.

Except I’m not convinced. What are you developing, Autism Speaks? Will I be able to go get a genetic test and get targeted treatment for the digestive distress, neurological circadian rhythm sleep disorder, dyspraxia, anxiety disorder, and connective tissue disorder that are my genetic hitchhikers, the traveling companions of my autistic genetics? That would be a dream come true — not just for me, but for the millions of other people of all neurological profiles who also suffer these conditions and may share the particular genetics related to them.

I think MSSNG is more likely to be part of that “cure mentality” Autism Speaks claims it has jettisoned by changing the wording of its mission statement. I think MSSNG is a way to detect autism in the womb. I think MSSNG is a way to provide a “solution” to autism….. I think MSSNG is a way to make most future Autistic children be as missing as the estimated 80% of Down Syndrome children who are not born, thanks to genetic testing.

Prove me wrong. Fix my digestion and connective tissue and my sleep patterns that are too messed up for me to be employable. Please, do prove me wrong.

I am part of that “spectrum” you now speak of reaching across. Show me the solutions.

2. Throughout the Lifespan

This is another “I’ll believe it when I see it.” The entire world still thinks of children when they think of autism. They think it so much that we don’t ever really grow up, we become “adult children.” If Autism Speaks has a new commitment to “solutions” throughout the lifespan, let’s start seeing the word “adult” appearing more often. Alone, as a noun. Not as an adjective to modify the noun “child.” We grow up and we need help.

What are you going to do about the 10%+ of Autistic adults who end up in the penal system? what are you going to do about the 10%+ of Autistic adults who end up homeless? What are you going to do about Autistic adults who are deemed “too high functioning” to get services but “too low functioning” to be helped by Vocational Rehabilitation? What are you going to do about the Autistic adults languishing in sheltered workshops because no one cared enough to introduce supports to help them into the mainstream workforce with real wages? What are you going to do about the Autistic adults stashed away in institutions who could be living independently in the community with adequate supports?

You, Autism Speaks, are vacuuming up all the money from all the local communities, to the tune of $122 million per year and you are giving back only $4 million of that in actual services. You can change the wording of your mission statement all you want, but until you start helping the thousands of Autistic adults who are homeless, hungry, or imprisoned because there was nowhere for them to go and no services for them (because there was no money to help them, since it all ended up going to Autism Speaks) then your new mission statement is nothing but words designed to provide a louder and more elegant “sit down and shut up” to the inconvenient Autistic people who actually need the help you love to pretend you are giving them.

3. For the Needs of Individuals With Autism

Oh, yes. About our needs.

We need schools to accommodate us, from pre-school to university level. We need the supports and accommodation to attend school within the community, not segregated. We need programs that understand that our academic needs and our social needs can be on radically different levels and that both those needs must be addressed or you have failed us and, by extension, all of society.

We need to be spoken of in respectful terms, not called a tsunami or a public health crisis. Not to have our beautiful brains compared to cancer, AIDs, and diabetes. Not to be called a disease. Not to be used as inspiration porn. Not to be portrayed as the haunting menace that will destroy families, society, the economy, and all of civilization.

We need real access to healthcare, not to have our co-occurring conditions dismissed as “that’s just what autism is like” and not to be subjected to quack treatments like bleach enemas, worms, chelation. We need medical professionals who will take the time to understand our healthcare access barriers and work with us to overcome them. We need to have it understood that having spoken communication does not automatically erase our support needs and we need to have it understood that not having spoken communication does not automatically erase our intelligence and autonomy.

We need safe places to live, access to people we love, adequate healthy food to eat. We need to not be isolated from the community. We need to not have our autonomy overrun. We need help with employment for those of us who can work and we need help with financial support for those of us who cannot. All of us need support for the activities of daily living, and we need to have our support needs recognized, understood, and respected even though they can look very different from one person to the next.

And all that’s just for starters. Can you address this baseline, Autism Speaks? It’s in your mission statement now. We’re waiting.

4. For Their Families

The number one thing our families need is to see us provided for. Our families need the peace of mind that comes from knowing we will be okay when they have passed on. Our families need to see us being educated appropriately. Our families need a level of social understanding of autism that lets them not get harassed by neighbors for living with us in their homes, that lets them go shopping or to a restaurant with us without being judged as bad parents, that lets them hire a sitter to watch us for a reasonable price.

Presenting us as terrible burdens does not help our families. Calling us a public health crisis does not help our families. Encouraging traumatizing ‘therapies’ that create anxiety problems and PTSD in us does not help our families.

5. Through Advocacy and Support

Yes, what kind did you have in mind? We don’t need any more of that ‘advocacy and support’ like the “I Am Autism” video. We don’t need to be told we’re “MSSNG” (the two Is that are missing are the ones they are trying to pull the wool over.) We don’t need to be called a tsunami or called lepers or have it said that we are so pure and innocent because we don’t care about money. (I can show you an awful lot of Autistic adults who care an awful lot about money because they don’t have enough to pay the rent.)

How do you intend to advocate for us now? Is your support going to change? Are you going to spend more than the pitiful 3% of your income you currently spend on services for us and our families? Do the people who lovingly volunteer their time and resources to organize your fundraising walks realize that only three cents of every dollar they raise is actually going back to the community?

You’ve got to do much better in your advocacy and support than your track record, Autism Speaks, for anyone to take this new mission statement seriously. Where are your solutions that come through advocacy and support? What are you planning to solve?

6. Increasing Understanding and Acceptance of Autism Spectrum Disorder

This is where your alleged solutions start to sound like little more than buzzwords, Autism Speaks. You have latched on to the word “acceptance” without understanding what it means. I know you don’t understand what it means because you never would have listed this as one of your solutions if you really understood “acceptance.”

Yes, we have been calling for acceptance. We have been calling for acceptance of Autistics! You are calling for acceptance of Autism Spectrum Disorder? Seriously?

Accepting Autistics means accepting that we often look and sound and choose differently than other people but we are no less worthy of dignity and respect. Accepting Autistics means working with our patterns of strengths and struggles to help us find our way in this fast-moving and chaotic world. Accepting Autistics means making room for us at the table. We deserve to live independently in the community, with whatever supports we need to accomplish that. We deserve a chance to work, to go to school, to have a family, to shape a meaningful life — meaningful from our perspective and our needs and desires, not meaningful according to your judgment of how you think we should live.

You are calling for accepting autism spectrum disorder. What does that even mean? How does that help us? We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us. If you have real solutions, they will be about accepting us, not about accepting a disorder.

7. Advancing Research Into Causes for Autism Spectrum Disorder and Related Conditions

Here! Here! Here! This is it right here! This is why your new mission statement is far more terrifying than calling for a “cure.” This is why your emphasis on “solutions” is so chilling to me!

You want to study the causes of autism? You are dedicated to promoting solutions related to finding the causes of autism??? If you find out what causes autism, what solution are you planning to implement? Why do I keep hearing the word “final” every time I think about your solutions for the causes of autism? This is why I do not trust your shiny new mission statement. This is every bit as much entrenched in the cure mentality as your old mission statement. This is a piercing dog whistle for pre-natal testing and abortion.

This is why I read your new mission statement and I still see a huge organization draining all the money from local communities — money that could have helped us, our families, our schools, our vocational aspirations, our future — and using that money to research how to kill us before we are born.

This is why I say you have not changed a damned thing. You have slapped a fresh coat of paint on the same terrifying eugenics agenda you’ve always had, Autism Speaks.

You only took the word “cure” out of your mission statement. You did not remove the hatred of our existence. You might have fooled some people, but you aren’t fooling me.

8. Advancing Research Into Better Interventions for Autism Spectrum Disorder and Related Conditions

Meet the new torment; same as the old torment. Are these the better interventions that strip away our autonomy more efficiently, leaving us even more vulnerable to predators? Or is this more support for “treatment centers” that use electric shock on us? Or are these the better interventions that prevent us from being born in the first place?

No thank you, Autism Speaks. You have to do more than draft some buzzier buzzwords for me to trust you.

In fact, I think I agree with my friends who have said that the only thing you could possibly do at this point to win our trust is completely dismantle and donate all your money to other organizations that are Autistic-led and doing the real work to make our actual lives better.

Who cares what causes autism? What good can it do Autistics to learn why we exist? We are grossly under served — all of us, “across the spectrum and throughout the lifespan” are not getting what we need to thrive and you are taking the money and volunteer time that could help bridge that gap and throwing it at research designed to eradicate us.

No. You have not changed a damned thing. I still don’t trust you. I still don’t trust those who support you.

All the carefully worded mission statements in the world will not change that.

1. https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf
2. https://www.autismspeaks.org/sites/default/files/docs/annual_report_9-11.pdf
3. https://www.autismspeaks.org/science/science-news/autism-speaks-launches-mssng-groundbreaking-genome-sequencing-program

Autistic Inertia: An Overview

Mason Dixon Line

Image description: a photo of the Mason Dixon line from about 20 miles away, taken by Sparrow Rose Jones at the Maryland/Pennsylvania border near Clear Spring, Maryland on October 4, 2016

This is a re-blog of a post originally made on January 2, 2013. It has been slightly edited for grammar, clarity, and availability of external links, but not for content.

Autistic Inertia: An Overview

I was talking with my boyfriend yesterday about autistic inertia. I was describing how it affects me and bemoaning the fact that it’s so clearly a real thing that exists but I never see researchers or educators talking about it — just us Autistics. We know it exists, we know it’s a real thing, but it’s not in the official literature and no one is researching it.

After I described it a bit, my boyfriend remarked upon how similar it sounds to what people with Parkinson’s experience. Upon reflection, that didn’t surprise me too much since Parkinson’s is linked to dopamine and I’ve read autism research that talks about irregularities in dopamine and seratonin in the autistic brain. He did a little searching and found a study using Parkinson’s medications on autistic people that reported little improvement. But he also remarked that if the researchers weren’t specifically looking for improvement in autistic inertia, they may have missed some of the effects of the medication.

I promised my boyfriend that I would send him some links to things fellow Autistics have written about autistic inertia. At the same time, I realized it’s been a while since I updated my blog and so I thought I would just share the information here in case it’s helpful to more people than just myself and my amazing boyfriend who is always so willing to go out of his way to understand me better.

The first thing I ever read about autistic inertia was Anna Sullivan’s handout from her presentation at Autreat 2002: Inertia: From Theory to Praxis. Sullivan talks about the different manifestations of inertia and her descriptions make it clear that inertia is not one single thing. From what I can see, there are elements of executive dysfunction, of low energy/hypotonia, and of being out of touch with one’s body and emotions. And this is just the beginning, from what I can tell. One thing Sullivan doesn’t mention, though, is the idea that inertia is a difficulty in “changing gears.” You will see the professionals talking about “gear changing” issues sometimes and that’s a part of inertia, although not all of it.

Also, Sullivan doesn’t mention that inertia in autistics is not dissimilar to Newton’s inertia, in that not only do we have difficulty starting things if we’re stopped but we also have difficulty in stopping things if we’re started. As I told my boyfriend yesterday, when I start researching for a paper, I have a hard time stopping the research and starting the writing. So I will end up with enough research material for seven papers before I ever manage to make myself stop researching and start organizing my material and writing it out. It does mean that my papers tend to be really good since I know far more than I end up putting in writing. But it also means that it doesn’t matter how early I manage to start working on a paper, I will always be scrambling to finish it at the last minute.

Something very important that Sullivan points out is the unevenness of skill sets in autistics. That is, an autistic person might be able to do something easily one day but run up against severe inertia with the same task on another day. Autism isn’t something constant and steady-state but rather something variable, more like multiple sclerosis, fibromyalgia, or lupus. What we can do one day, we can’t do every day. What we can’t do one day, we might be able to do on another. This, in my experience, has been one of the hardest things for people around me to grasp. People seem to expect some sort of constancy and consistency in the people around them and I’m just not able to provide that steady, constant level of skill and ability. Some days I easily “pass” for non-autistic while other days I am quite obviously Autistic, no matter who you ask.

Sullivan ends with a suggested reading list. Since the article is older, one item on the list might be supplanted with a newer book. Sullivan lists “Punished by Rewards” by Alfie Kohn but I might recommend also reading (or reading instead) “Drive: The Surprising Truth About What Motivates Us” by Daniel H. Pink.

Sullivan mentions a posting from Kalen and it’s really good so it should be on the to-read list as well: Inertia: by Kalen. Kalen writes about inertia from a more Newtonian perspective, including both getting stuck within a task as well as getting stuck trying to do a task. Kalen also mentions how disabling inertia can be in a person’s life. It was a relief for me to read someone else describing inertia that way because it has certainly prevented me from doing many things I really wanted to do and it’s hard not to feel lazy or inadequate about one’s own inertia without the proper understanding of what it really is and what it really means.

Kalen describes inertia as “a combination of attention shifting and motor planning difficulties” which definitely resonates with my experience. There are times when I am only able to act by willing my body to perform and just as many times when I cannot get my body to perform, no matter how much will I exert. When I lose the ability to speak, I can think about the sounds that I want to create. I can think about the ways my mouth and throat and lungs move when I generate those sounds. But I cannot will my body to speak. It is as baffling to me as it is to those around me, but I can think the words — I can even type the words — but I cannot speak the words when I am in a state of “speaking inertia.” Just as there are times when those around me feel I might never shut up, there are times when it seems I might never speak again.

Kalen offers a few suggestions for how to work with or around inertia, warning that not all suggestions will work for all people, nor will a suggestion that works sometimes for someone work every time or in every situation for that person.

Aspergia Jones writes about the idea that autistic “special interests” might actually be a form of inertia in her blog entry on her site, Letters from Aspergia. She talks about inertia as a sort of “stuckness” and mentions how much more we Autistics tend to get overtaken by “ear worms” — music stuck in the head. Or movies stuck in the head. Or anything stuck in the head. I have gotten stuck on a word or phrase and ended up repeating it over and over. In my opinion, yes, “stuckness” is inertia, whether it’s being stuck on a special interest or stuck on song lyrics or just stuck.

In the original version of this blog post, Aspergia Jones posted a comment:

Thanks for the link! You’re right, very very little is written about autistic inertia, even though it really is A Thing – personally, it can be more disabling than the social stuff. I think the research tends to concentrate on the things about autism that are a problem for or seem weird to neurotypical folk, like stimming and differences in social interaction. Things that affect us deeply but don’t affect those around us – like sensory/motor stuff and inertia – get a lot less press.

Although, just as with every other aspect of autism, it is easy to assume that all difficulties trace back to an autistic trait even when they don’t. On LiveJournal, ChaoticIdealism writes about Autistic Inertia & Sleep in a way that makes it clear to me that they are living with Non-24-Hour Sleep-Wake Disorder and assuming it’s actually a manifestation of autistic inertia. I can really relate to that since I originally thought that my own Non-24 Disorder was actually Autistic Burn-out. (That’s a whole different blog entry, but you can read about autistic burnout in Amanda Baggs’ excellent essay Help! I seem to be Getting More Autistic!)

Ali/Eliot writes about inertia and perseveration as two sides of the same coin in his blog entry, Stare Up at the Sky. He talks about how difficult it can be to make decisions — everything from big decisions like buying a new laptop to little decisions like what to eat for lunch. He talks a bit about how his partner, Kitty, does thing to make it easier for him to eat regularly and make other decisions.

This blog entry is no longer available. In the original post of this blog entry, Ali wrote a comment:

The post you’re referencing of mine is a couple of years old, and my thoughts haven’t drastically changed so much as refined a little. Inertia and choice paralysis (which isn’t a term I used in that entry but I think is self explanatory?) also happen for people who are perfectionists–and I’m that, too. The basis is entirely different, at least in me. Autistic inertia is most of what I listed in the post originally: needing external or internal prompting to begin or end a task (or part of a task), where task is a value-neutral word for any possible thing you could be doing. The perfectionist inertia is more about the choice paralysis: you can’t pick which option because one of them will be the wrong option or at least not optimal, so until you have all the data ever you’re stuck. I think my long example in the post about laptop purchasing is actually more related to perfectionism than to autism.

There’s overlap between the two, but thinking about them as separate things has helped me sort out what I can consciously change (the perfectionist stuff) and what I can’t or find very difficult to change (like remembering to eat if I’m distracted). And it’s been almost like there’s inertia about my inertia: when I can handle the perfectionist stuff, it makes it easier to brain together some of the physical inertia or get the song I’ve had stuck for over a week out of my head.

Andrea has a few tips on how to battle inertia in her blog entry Coping With the Inertia of Task Paralysis. But, as a commenter points out: “Great ideas, Andrea, but how the heck am I going to remember to do all that? I have a hard enough time remembering to remember and now I’m supposed to remember the reminders for remembering? Help! I’m trapped in an infinite regress!”

I’m sure there is much more out there on autistic inertia, but the above is a fair introduction to the topic. Please do discuss this in the comments! I really want to hear from anyone and everyone about inertia, whether it’s personal experiences or scientific (or even pseudo-scientific) theories. This is a topic that needs to be understood much better than it is and right now we are the ones hashing the ideas out. It’s up to us to figure out what’s going on and what to do about it.

Thanks for reading and I look forward to hearing from you all!

Autistics Are at Greater Risk of Trauma

Wolf Lake

[image description: a photo of Wolf Lake in Sebring, Florida, taken by Sparrow Rose Jones. It has nothing to do with either autism or trauma, but it’s pretty and the author enjoys including an image with their writing.]

I am at the 2016 Association for Autistic Community (AAC) conference. During Kit Mead’s excellent presentation, Autism, Awareness Campaigns, and the Mental Health System (slides), several people mentioned the need for research supporting the idea that Autistics might be more easily traumatized. I mentioned that there has been a small amount of research in that area and others were eager to know more. Since multiple people wanted that information, I decided to make a brief annotated bibliography in a blog post to more easily share it with as many people as would like to see.

As you might imagine, the bulk of the available research (and there isn’t a lot of it yet — I definitely agree that we need more research into multiple aspects of autism and trauma) focuses on the role of the amygdala in stress and trauma imprinting. There are two main aspects of showing an autistic predisposition for trauma: showing the role of the amygdala in sustaining trauma, and showing the ways that the autistic amygdala is different in structure and/or function, thus exacerbating that brain structure’s role in trauma. Some of the following research is of one type or the other, much addresses both halves of the equation.


Some assessments of the amygdala role in suprahypothalamic neuroendocrine regulation: a minireview

This article has little to do with autism specifically. I am including it in this annotated bibliography because it does a good job of explaining the role of the amygdala for those who don’t have a neuroscience background and thus may not instantly know why the amygdala is important in considering the autistic risk for trauma. As the abstract says, “The amygdala plays a key role in what has been called the “general-purpose defense response control network” and reacts in response to unpleasant sights, sensations, or smells. Anger, avoidance, and defensiveness are emotions activated largely by the amygdala.”

The Basolateral Amygdala c-Aminobutyric Acidergic System in Health and Disease

This research review article from 2016 is the main “smoking gun” I was referring to when I mentioned that there has been some research already that has found a higher risk of trauma among Autistics.

“This Review discusses the anatomy, development, and physiology of the GABAergic system in the BLA and circuits that modulate GABAergic inhibition, including the dopaminergic, serotonergic, noradrenergic, and cholinergic systems.” That’s a lot for those of us who are not biochemists, but I’m going to try to boil it down a little bit. The article says that Autistics, along with a few other categories of neurodivergents (Alzheimer’s, TBI, epilepsy) have hyperexcitability in our amygdala. That means the neurons in our amygdalas are firing much more often than neurons in the amygdalas of the general population and that this increased amygdala function leads to anxiety and “the development of neurological and/or neuropsychiatric diseases.”

In Autistics, GABA metabolism is reduced and certain GABA receptors are delayed in their maturation. The authors point out that a reduction in GABA-mediated synaptic inhibition (a reduction in ‘less neurons firing because GABA “calms them down”‘) is linked to an increase in anxiety. The hyperactivity of the amygdala not only increases anxiety but greatly increases the risk of developing PTSD. The review goes on to say that benzodiazepines (which are commonly given to people experiencing anxiety and/or PTSD) may not be effective in Autistics because their mode of action relies on the same GABA receptors that take longer to develop in Autistic people than in the general population.

The authors are careful to point out that they are not arguing that hyperactivity in the amygdala results in PTSD but simply to point out the role of GABA in PTSD and the action (or lower action, as it were) of GABA in the autistic brain creates an environment more likely to result in PTSD and other anxiety disorders. They suggest the need for research into deeper understanding of the role of GABA and the possibility of developing therapies that increase the growth of interneurons that could reduce the excitation of neurons in the amygdala.

The Result of Traumatizing Events on a Child With Autism

Although the 2016 GABA review is new, knowledge of the role of the amygdala in autistic trauma has been around for a while. This is a 2008 statement by Dr. David Larson Holmes who, unfortunately, does not include citations when he writes, “Recent studies have confirmed that children with autism have very active Amygdalas; the center of the brain that stores traumatic events. This center is directly connected to the brain stem [reticular formation] which is the area of the brain stimulated during potentially threatening conditions and places the child in a ‘fight or flight’ condition. […] Upon further analysis of the brain activity of children with autism it has been found that the Hippocampus, the center of the brain which stores pleasant experiences, is actually much less active than the children’s Amygdalas. This has resulted in a supposition that children with autism are affected more from traumatizing events than pleasant events and that the traumatizing events have greater robustness; thereby maintaining a greater degree of panic and fear in the child than what would be found in typically developing children.”

Amygdala and Hippocampus Enlargement During Adolescence in Autism

Strictly speaking, this 2010 study doesn’t indicate anything about increased risk of trauma. I’m including it because it’s an example of a structural difference in the amygdala between Autistics and the general population. The authors are unsure whether the increase in the size of brain structures causes emotional differences or whether the “increased emotional learning” Autistics go through when compared to the general population is the cause of the structural changes.

Amygdala Subregional Structure and Intrinsic Functional Connectivity Predicts Individual Differences in Anxiety During Early Childhood

This article is not about autism or Autistics, although the lead researcher, Vinod Menon, has conducted other research that does focus on Autistics. This 2013 paper ties in with the uncited claims above of Dr. Holmes, as well as the 2010 study directly above about amygdala size increases in Autistics during adolescence (an emotionally difficult time for nearly anyone of any neurological profile.)

The study found that the larger the amygdala, and the more connectivity between the amygdala and other neurological structures, the higher the anxiety rate in children and the greater the risk of anxiety disorders developing later. In addition to the human study upon which this article was based, “Studies of laboratory animals placed in an environment causing chronic stress have determined that the animals’ amygdalae grew additional synapses and that synaptic connectivity increased in response to the resulting persistent anxiety.” This suggests that what the authors of the 2010 study were calling “increased emotional learning” in adolescence was actually a burden of chronic stress and anxiety, causing the amygdala to grow larger than non-autistic controls.


All of this information is pieced together and none of it is so clear cut as the 2016 GABA minireview, but taken together, they paint a strong portrait of the greater trauma risk Autistics face and the great need for further research into the nature and causes of trauma in Autistics.

The Fruits of Damaging Childhood Therapy

Hudson River

[image description: a photo of the Hudson River, taken by Sparrow Rose Jones. A bank of clouds hangs low in the sky. The river looks inscrutable and the way to it is mostly inaccessible, due to scrubby weeds and aging concrete structures.]

I cannot go to a therapist.

It’s not that I don’t have the money to go. I currently have some amazing insurance through Florida Medicaid. I pretty much have my pick of therapists, but I can’t go. This is going to be difficult for me really soon because I need to go to a gender therapist to prove I’m “stable” enough to be allowed to medically transition. I am concerned.

I am concerned because Kayden Clarke was killed by the police during a suicidal episode triggered by being told he could not have access to medical gender transition until his autism was “cured” (which, as you already know, translates to “never.”) I fear facing similar barriers in my own efforts to get my medical and psychological needs appropriately addressed. I am required to go to therapy; I cannot go to a therapist.

The reason I can’t go to therapy is because I am living with the C-PTSD that has resulted from years of iatrogenic damage resulting from childhood therapy. I’m going to unpack that sentence now, because it probably has some terms you aren’t familiar with and because I just put a decade of pain and a lifetime of aftermath into one sentence. Bear with me, gentle reader. It is impossible to talk about these things and almost as difficult to write about them.

C-PTSD is Complex Post-Traumatic Stress Disorder. It is not yet officially in the DSM, but there was strong debate during the shaping of the DSM-5 and C-PTSD was included in a subsection under PTSD. Childhood therapy is not my only source of C-PTSD, but it was a strong contributor. I encourage you to do some reading about C-PTSD and reflect on the symptoms carefully. The symptom picture will probably look familiar to you. I believe that recognition comes from the large overlap between C-PTSD symptoms and descriptions of autism. I believe that large overlap comes from the amount of trauma that so many Autistic people grow up with.

The Summer 1998 issue of The Communicator, the newsletter of the Autism National Committee (AUTCOM), includes a quote from the book Learning to Listen (1996) by Dr. Herb Lovett:

People who have been hurt in the name of therapy may not understand their plight any differently than survivors of cult abuse or sexual abuse. A common feature of post-traumatic stress syndrome is the flashback in which a person acts as if a memory is present reality…. every time they recall their previous maltreatment, unless their panic and rage are recognized as a function of stress, they are likely to be further stigmatized as “impossible to serve.” – from Can Aversives and Restraints Produce PTSD in People with Autism?

In addition to the trauma of being helpless and subjected to difficult therapies, Autistics have an extra obstacle when it comes to trauma, due to having a nervous system that is different from that of the majority of people and living in a world where we are “neurologically outnumbered,” as Carol Greenburg so aptly puts it. Just living in this world, with its sensory content that leaves Autistics overloaded and underfed in varying patterns and to varying degrees can be filled with trauma-triggering events that seem ordinary to people with nervous systems tuned more to the keys found in the majority of people. Ariane Zurcher has already written about our very active amygdalas and the risk of trauma. Rather than “re-invent the wheel,” I invite you to read her essay on Trauma & Autism.

I don’t believe that all therapists are bad. I don’t believe that all therapists who work specifically with Autistic children, teens, and adults are bad. I believe there are good therapists and helpful therapists. It wouldn’t be so upsetting to me that I can’t go to a therapist if I thought they were all bad and unhelpful. I would love to find a good therapist to help me work through my issues. I would especially love to find a good therapist who can help me with my medical gender transition.

I am not telling people to give up  on finding a therapist for their Autistic child. If your child needs help with one or more aspects of life, there’s nothing wrong with looking for a trained professional to help. What I am saying is that therapy should center around what your child needs and should serve your child’s best interests. I have experienced trauma in childhood therapy and it still haunts me and overshadows my life. I have witnessed Autistic children traumatized by bad therapy and the suffering was real and very visible. The entire family suffers when a child is traumatized by careless or harmful therapy, but the child suffers the most, of course. It makes me heartsick when I see it and I would give anything to save children and their families from those experiences.

Iatrogenic damage is damage that is caused by medical examination or treatment. What I am saying when I call my trauma iatrogenic is that it was directly caused by years of therapy. This is not as radical as it might sound. The mental health field acknowledges, albeit quietly, that therapy can lead to iatrogenic damage. Boisvert and Faust (2002) write that, “Iatrogenic symptoms may originate through the over-reliance on a belief system within which therapists interpret, reinterpret, or label clients’ characteristics or distress as pathological. Therapeutic communication that emphasizes pejorative language may introduce clients to this belief system.” This ties directly into the message of autism acceptance — so many Autistic adults (including myself) have told the world how harmful pathologizing language is.  These researchers have written an academic article that backs our claim up.

The evidence I’m sharing here is mainly about mainstream psychotherapy. It’s pretty intense data: Dr. Allen J  Francis estimates that as many as 15% of psychotherapy patients worsen with treatment. When you add in the special situations that arise in autism therapy, how much does that estimate rise?

I’m asking you to avoid therapies that teach your child that they are lesser or broken in some way. I’m asking you to avoid therapies that teach your child that the ways they move or communicate are wrong when those ways do not harm anyone and are being changed because they “look odd”  or make others uncomfortable for non-harmful reasons. I’m asking you to avoid therapies that take away your child’s ability to set boundaries and enforce them.

And I’m warning you about the life-long damage that can come from inappropriate therapies. I actively need to go to therapy and cannot because of the damage I have sustained in childhood therapy. I enter a therapist’s office and start crying uncontrollably and can’t stop until I leave. Therapy is dangerous for me because therapists see that reaction and, understandably, want to have me committed on the spot. My ability to benefit from therapy has been stripped from me, leaving me with fewer tools for coping with life and fewer mentors trained to help me thrive. The damage inflicted in childhood can last a lifetime. Approach therapy with caution and always keep your child’s best interests foremost.


How to Wage Love


image description: a deer, visiting my campsite to eat the nuts falling off the trees. She is standing just across the road from me, looking at me with fearless curiosity. She stands in the grass and behind her are trees, poised at the cusp between summer and autumn.

Enough with the war on autism. Enough with the war on Autistics. Enough with the war between adult Autistics and parents of Autistic children. Enough with internal bickering and blame. Enough.

It is time to wage love.

Autism Acceptance demands love.

The world is starving for love and your pantry is full.

The same oppression that is visited upon a marginalized minority from without is enacted within that same marginalized community. I’ve seen it again and again. Every group yearning to breathe free eventually eats its own. No group of oppressed people is immune to self-immolation.

Do not mistake the oppressor as “them.” the oppressor is always “us.” The oppressed are always us. Take this knowledge and convert it to a stance of inclusive love from which to call for justice. Wage love. Always wage love.

When you can see the mass of humanity as one heart wearing many faces, you are ready. Assert your boundaries. Protect the vulnerable. Press for justice. But do not fool yourself into thinking you are battling them. There is no them.

Wage love, for there is only us.

Is Everyone “a Little Autistic”?


How do you like these apples? Just as apples can be different yet all be apples, people can be different yet all be fully human. You can’t support someone’s differences by pretending they don’t exist.

(Originally posted December 5, 2015)

You’ve heard someone say this before, right? “Oh, well, autism is a spectrum and I think that means that, really, everyone’s a little bit autistic.”

Now, I can see why someone might say that. I said something in my first book, No You Don’t: Essays from an Unstrange Mind, that might seem to support that idea: “And if you aren’t Autistic, don’t be surprised if you recognize pieces of yourself in here, too. Because autism is a difference of intensity and frequency but above all, it is a slice of the human condition. If you are human, you will recognize yourself in some of the things I write.”

This passage does not say that everyone is a little autistic. It says that Autistics are human beings. As my book says a couple of pages later, we are not “a different species, an alien creature, a changeling, a robot, a freak of nature.” We are human beings and so much of what we experience is fundamental to the human condition. Our autistic nervous system affects how we experience our humanity — our experience is often heightened in intensity and colored by our different perspectives on life. But it is humanity we are experiencing because we are fully human.

The converse of “all Autistics are human” — “all humans are Autistics” — is not implied and does not hold. When I say all Autistics are fully human (which, in case you were doubting, we are!) I am in no way implying that all humans are autistic . . . not even a little bit. People see that Autistics are human and that we often experience very intense versions of basic human experiences — anxiety, for example. We often carry a lot of anxiety and we get stressed out and we meltdown from high stress.

Since everyone has felt anxious at some point and everyone has felt overloaded with stress and everyone has “lost their shit” at one point or another, some people get mixed up and decide that sharing such a common experience as a stress and anxiety meltdown means that they are “a little autistic” too. But that is not true and it is a diminishing thing to say, particularly to Autistic people.

If everyone were a little bit autistic, Salvation Army bell ringers would be illegal. If everyone were a little bit autistic, nothing ever would have strobe lights. Ever. Fluorescent lights, sirens, shirt tags, sock seams — these wouldn’t exist. There would be a strong social taboo against dragging a chair across the floor and making that horrible scraping sound with it. Perfume and cologne would be outlawed as hazardous substances and every school and workplace would have a quiet zone for recuperation. How we handled turn-taking would not involve long lines of people standing scrunched up close to each other. In short, if everybody were a little autistic, our whole society would look a great deal different than it does.

Experiencing a taste of what we live with does not make someone autistic, not even a little bit. It would be like me saying that, because I sometimes lose the ability to speak and need to type in order to communicate, I completely understand the lived experience of being an Autistic who never communicates with their voice. I can guess at the experience, but I do not live it. I have intermittent mutism and that does not make me “a little non-speaking” any more than someone who hates standing in lines or even someone who lives with daily anxiety is automatically “a little autistic.” The struggles I face are not the struggles others who have never spoken experience. The struggles non-autistic people face may have some surface similarities to struggles Autistics live with but that does not make someone “a little bit autistic.”

The only way I know to communicate how dismissive it is to say something like “we are all a little autistic” is to shift the whole idea into the context of some other disabilities:

“Sometimes I am looking for something and it’s right in front of me and I just kept missing it even when I was looking right at it. We’re all a little Blind, aren’t we?”

“The other day, I was sitting funny and my foot fell asleep. When I stood up, I almost fell down from the pins and needles. I guess we’re all a little paralyzed, huh?”

Those are ridiculous things to say. But so often I hear people saying analogous things, and not just about autism. How about, “I have to keep my house so clean and everything put away. I am so OCD!” Or “I am completely addicted to Sudoku puzzles!” Have you heard, “I can’t make up my mind. I just keep going back and forth I’m so schizophrenic.” Or, just as bad, the words are applied to something inanimate: “Rain, then sun, then rain, then sun. The weather is so bipolar today!”

Don’t do this! When you use someone else’s disability as an adjective for your quirks or otherwise reduce it to a one-dimensional descriptor, you are making light of their entire life. And when you say everyone is a little bit autistic, you are trivializing what it actually means to be Autistic.

I understand that some people have good intentions. They want to highlight the humanity of Autistics. Be careful — this is how person-first language arose: through an overzealous urge to bludgeon others with a disabled person’s humanity for fear that no one could see it otherwise. Others may be saying they are a little autistic in order to show solidarity with people they view as “fighting the good fight.” I’d like to show solidarity with People of Color but I would never dream of saying we’re all a little bit Asian or everyone is Native American inside or I’m a little Black. So don’t try to appropriate my disability just to show solidarity with me. I will appreciate your support just fine if you just try to pay attention and be sensitive. You can’t support my differences by pretending they don’t exist.

Autism and the DSM 5: Part 10: Development and Course: Part 4

picture of book pages

DSM 5? I’m an open book about this book I’ve opened. [image description: photo of the pages of an opened book]

Autism and the DSM 5: Development and Course: Part 4
originally published October 26, 2013

Part 1: Losing Your Diagnosis? 
Part 2: Diagnostic Criteria: Section A
Part 3: Diagnostic Criteria: Section B
Part 4: Diagnostic Criteria: Section C
Part 5: Diagnostic Criteria: Section D
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: Development and Course: Part 1
Part 8: Development and Course: Part 2
Part 9: Development and Course: Part 3
Part 10: (you are here)

After a pause to blog about other things, I’m back with some more examination of the DSM-5 diagnostic criteria for autism and related discussion points. I’m still working my way through the Development and Course section, which has seven paragraphs. Today, I look at paragraph four:

Deafness may be suspected but is typically ruled out. During the second year, odd and repetitive behaviors and the absence of typical play become more apparent. Since many typically developing young children have strong preferences and enjoy repetition (e.g., eating the same foods, watching the same video multiple times), distinguishing restricted and repetitive behaviors that are diagnostic of autism spectrum disorder can be difficult in preschoolers. The clinical distinction is based on the type, frequency, and intensity of the behavior (e.g., a child who daily lines up objects for hours and is very distressed if any item is moved).

The reference to deafness is based on our reputation for not responding to our name when it is called out. I think the most common reason for this is that we can get so focused in on what we’re thinking about or looking at that we close off the senses we aren’t using. Or, if we’re using our hearing to focus in on something, it’s hard for something else to break through to us. We tend not to have the same kind of sensory filters that non-autistic people have, so many of us don’t have the “cocktail party effect”  that makes voices stand out to us against a background of other sounds. I have seen research that tries to claim that human voices are “less important”  to us than other sounds, but I don’t think that’s a completely accurate interpretation for how we respond (or don’t respond) to voices.

The article I linked to claims we aren’t “motivated” by human voices. I think they are mixing up cause and effect and the truth is more likely that we aren’t as “motivated” by voices because we don’t hear them as well. On top of everything I mentioned in the previous paragraph, many of us also have some amount of CAPD (central auditory processing disorder) which seems to most strongly affect cognition in the range of human voices. I know that I can listen to music with a finely-tuned musician’s ear and hear every little nuance of sound but someone speaking can get very garbled very quickly. I’m not so good with telephones but can usually do well in a one-on-one conversation on Skype with a headset because the sound quality is better and always coming straight into my ears. In the open environment of a room, my hearing ability quickly degrades, especially if there are multiple people speaking at once or a noisy environment like  a restaurant with lots of piped in music, dishes rattling, etc.

I have surprised people when I have been sitting in a restaurant and started pointing out sounds to them — naming the song playing over the speakers above (“I didn’t even hear music at all!”) the sizzle of the grill in the kitchen (“oh! I hear it now that you point it out. But it’s so faint! How did you hear that?”) — yet I struggle to understand the speech of my dining companion sitting right next to me. I have no auditory filters — I hear EVERYTHING, all at once — and I have CAPD, so speech gets mixed up. (Think of CAPD as being something similar to having dyslexia of the ear.)

So, yeah, I probably have less neurological “pleasure reward” from voices, too. Even though I love the rich, chocolate sound of my boyfriend’s voice. Even though I can often identify people by their voice alone (a nice compensation for being blind to faces.) I’m not less motivated by voices, I just have a really hard time hearing and understanding the darned things!

So I suspect the actual issue with appearing deaf and not responding to hearing our name called is simply that we really don’t hear it. Some people seem to have a hard time understanding how our sensory perceptions work. It’s hard to fault them for that, since that ” how”  is actually a very individual thing. There are some commonalities, yes, but the overall pattern of hyper-sensitivities, hypo-sensitivities, changing sensitivities? That is excruciatingly individual. Every single thing I ever say about how my senses take in and interpret the world? There are Autistic people just like that and there are Autistic people not like that at all. Take me as a general guidepost but not a perfectly representative map.

Again, we see a mention that autistic behaviors can become more apparent in the second year of life. This is significant because it correlates with some vaccination times and could cause confusion in people who believe that autism is caused by vaccinations. The amount of change can be really dramatic, though. Some Autistic kids gradually reveal their autism as they grow and don’t make milestones on the same timetable as their age peers. Other Autistic kids really do change a lot, though. I’ve seen the video and photographic evidence: before age two (or so) the child is speaking, smiling, laughing. After age two (or so), the child no longer speaks, no longer smiles, and exhibits a marked loss of emotional affect. Science still has a lot of exploration to do before it begins to understand the development and course of autism.

When I look back at my childhood photos, I see myself laughing and smiling at age one and two but mostly deadpan, sullen, mournful afterwards. In my case it’s really hard to determine what’s what, though. I definitely became less bubbly when I started school because of the stress of it. The further along I got in school, the more stressful it became and the more my default affect became that of a dog that’s been kicked one too many times. I also had a brother who spent most of my childhood dying and completed the task just before I turned seven. So it’s impossible to look at my childhood facial expressions and determine what might be a sign of autism and what is just a general sign of a miserable childhood.

I find it interesting that now that I am an adult, I frequently get asked what I’m angry about or what’s wrong when I’m feeling calm and peaceful and happy. I am definitely a sufferer of “Bitchy Resting Face.” Either my face developed the habit of looking unhappy all the time (except when I’m laughing or when I’m paying attention to making my face look pleasant) as a result of years of suffering or I really do have affect issues and my default, relaxed, no-affect face looks gloomy to others who are so accustomed to all faces having stories written on them that they are still trying to read mine even when it’s just a blank page. Or I could just have, you know, Bitchy Resting Face.

Another point the DSM-5 makes is that many of the repetitive practices of autism are common to all small children. This is an echo of what I (and many others) are often saying: that autism is not so alien. The things we do are mostly things all people do. We just do them more often and with more intensity. My sister is not autistic. When she was about two years old, she memorized every commercial on television. She is quite bright so she only needed to hear them once to have them completely memorized. She would gallop through the house on all fours, pretending to be a horse, singing commercial jingles at the top of her lungs. If you said something that had two or three of the words of a song from a commercial in a row, she’d start singing the whole jingle.

My sister was deeply obsessed with television commercials and repeated them all day long. But for a two-year-old, that is normal behavior. I used to know an Autistic boy who behaved the same way at age twelve. He memorized commercials and entire television and movie scripts. Almost everything he ever said was a line from a movie. The technical term is echolalia, but when you read about echolalia, so much of the literature claims that the people engaging in it are not making sense and are just randomly speaking nonsense. In my experience with “Kyle,”  that was not the case at all.

Kyle was always communicating when he repeated movie scripts. If you looked past the fact that someone else had written the words he was using, you could clearly see that they were his words — he had made them his own. And he was always matching quoted phrases to the situations he was in. For example, if you were serving him at Thanksgiving and asked him if he preferred breast meat or dark meat he might answer by quoting Freddy Krueger from the horror film, “Freddy vs. Jason”:  “How sweet! Dark meat!” (In the creepy Freddy voice and everything!)

Not everything Kyle said was so easy to interpret as that, but every quote he recited had meaning for him, regardless of whether those of us around him could accurately interpret it or not. All I can say about researchers and other professionals who claim that repetitive movie quoting is random and pointless is “what we have here is failure to communicate — some men you just can’t reach.”  And, in case I’m not being clear the failure is on the part of the professionals. The “echolalic” is doing just fine . . . for anyone who is willing to really listen and presume competence and communication.

So there’s my take on paragraph four. I’ll be back with the next paragraph and on through the rest of the DSM-5 entry. I will probably be be returning to this DSM-5 topic (with interstitial side-tracks on other topics, including the upcoming Autistics Speaking Day and Autistic History Month essays) throughout the rest of the year because there’s so much in there and it’s so fascinating to me. I hope these ramblings are helpful to you, too.

Autism and the DSM 5: Part 9: Development and Course: Part 3

picture of book pages

DSM 5? I’m an open book about this book I’ve opened. [image description: photo of the pages of an opened book]

Autism and the DSM 5: Development and Course: Part 3
originally published October 8, 2013

Part 1: Losing Your Diagnosis? 
Part 2: Diagnostic Criteria: Section A
Part 3: Diagnostic Criteria: Section B
Part 4: Diagnostic Criteria: Section C
Part 5: Diagnostic Criteria: Section D
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: Development and Course: Part 1
Part 8: Development and Course: Part 2
Part 9: (you are here)
Part 10: Development and Course: Part 4

I’ve really been enjoying writing this series. It’s given all of us a chance to look more closely at what’s in the DSM-5, it’s given me a chance to explore related themes that are very important and interesting to me, and it’s given others a chance to process some of the things going on in their own lives. I encourage everyone to look back at the comment sections of previous entries in this series where there are some great discussions of diagnostic issues and issues related to living with autism or helping a loved one with their experience of living with autism.

The last entry has an especially interesting discussion in which a reader shared her concerns for her dear son who has gained and lost speech skills twice now. I would love to see more people enter that conversation with words of support or shared information or similar experiences. I love it when all of you come together and help each other. It makes me feel really good to facilitate a place where those kinds of conversations and connections can occur!

Today I’m going to look at the third paragraph in the Development and Course section of the Autism Spectrum Disorder discussion section of the DSM-5:

First symptoms of autism spectrum disorder frequently involve delayed language development, often accompanied by lack of social interest or unusual social interactions (e.g., pulling individuals by the hand without any attempt to look at them), odd play patterns (e.g., carrying toys around but never playing with them), and unusual communication patterns (e.g., knowing the alphabet but not responding to own name).

When I look at descriptions like this, my first instinct is to think back on my own childhood. I’m sure that’s a first response for my readers who are also Autistic (and maybe some who aren’t) and I’m assuming that parents of Autistic children immediately think about their own child’s early development when they read a paragraph like that one.

Most of my symptoms didn’t really get noticeable until I went to pre-school because at school there were a lot of other children to compare me to. Also, school was much louder, more chaotic, more crowded, and generally more disturbing to me than life at home. But while things didn’t really get serious for me until I was four, there were earlier signs.

I did have social interest — I doted on my older brother. I don’t remember unusual social interactions in my early years but that doesn’t necessarily mean anything because I’m often told that something I did or said was strange or disturbing now as an adult when I had not realized that I was doing or saying anything out of the ordinary at all. So I’m not sure whether I would recognize unusual social interactions from my early childhood. I remember a lot of what, looking back, were very unusual social interactions from age 4 on, but I don’t have a lot of context for understanding earlier behavior. (However, the description does say “often,” not “always.” Similarly, it says “frequently” with respect to delayed language development, but we know that the former diagnosis of Asperger’s that has now been rolled together with PDD-NOS and other former diagnoses into the single category of ASD was noted for having no noticeable language delay.)

I did have odd play patterns, but only odd in retrospect. They seemed normal to me — after all, why would I engage in play that *I* found odd. I lined my dolls up a lot. I did name them all, but I couldn’t remember their names so at one point I wrote their names on slips of paper and attached each name to its corresponding doll so I could remember what I had named them. (Naming one’s dolls seemed very important to me because that was always the first question an adult asked when they saw one of my doll’s: “what’s her name?” so I was trying very hard to be able to have the right answer. I was very concerned with having the right answer for every question.)

After my diagnosis, I spent a lot of time looking back over my childhood, initially with the hope that I could find enough evidence to disprove the autism diagnosis. I didn’t want to be autistic and I fought hard against the diagnosis for a long time before I accepted it. One of the things I hit on was the thought that I had, indeed, been engaging in imaginative play so I couldn’t possible be autistic. After I thought about it for a few more years, I finally understood that what I had thought was imaginative actually wasn’t.

My prime example for imaginative play was that I build an “island home” in my play corner. I built a hut by attaching a sheet to a bookcase and to a toy chest so it angled down like a lean-to. I hauled some baskets in there. My father gave me a beautiful abalone shell that I added to the set. But what was I actually doing? I was making a life-sized diorama. I had read Scott O’Dell’s award-winning book, The Island of the Blue Dolphin, and was captivated by the story of an island girl who had to survive alone after her village moved to the mainland, accidentally leaving her behind.

I reconstructed Karana’s home from items around the house. I tried to emulate as many elements from the story as I could. I would sit in my “whalebone hut” and think about things that happened in the book. But I never made new adventures for Karana. I never imagined new things. My “imaginative play” was entirely imagined by Mr. O’Dell.

My daydreams were the same. I loved the show Gilligan’s Island and I would imagine episodes I had watched, inserting myself into the story. Today, there’s a name for a character like that. People who write fanfic (fan fiction: stories set in a pre-existing fictional universe) who include themselves (or a thinly-veiled version of themselves) into stories are said to be creating “Mary Sues.” I was the queen of the Mary Sues as a child!

People might well have wondered what I was thinking about when I sat, quietly daydreaming. I had many different thoughts, but a common daydream themes were Mary Sues: me on Gilligan’s Island. Me on Bewitched. Me on Lost in Space. I never made new stories — they were always established episodes I had actually seen. My presence never changed the plot or the outcome. I was simply inserted into a pre-existing story, whole cloth.

It took me a long time to understand what “impaired imagination” meant or to accept that I do actually have a different type of imagination from most people. I bristled at the idea that my imagination could be impaired. I am one of the most creative people I know. I knit, crochet, write, compose music, sew. I follow patterns or tutorials and I create new things. I see ways to rearrange things into new configurations that are different, not merely derivative.

I do have a much more difficult time writing fiction than non-fiction (not something shared by my fellow Autistics. I know several Autistics who write terrific fiction.) But I really didn’t like thinking of myself as someone “lacking imagination” at all.

I have since learned that, while I may not be “lacking” something (I am whole and complete!) I do have a different sort of imagination than people who have more mainstream neurologies. The breakthrough for me in understanding the differences in my imagination came when I was learning more about alexithymia (which is a label for a cluster of different but related states, all sharing the trait of having difficulty identifying one’s own emotions.)

I found an imagination self-test when reading about alexithymia and took it. It looks at two types of imagination, spontaneous and constructed, and analyzes whether the test-taker has both or predominantly one or the other. I got an extremely low numerical score, indicating that my type of imagination is almost entirely constructed, not spontaneous. That answered a lot of questions for me . . . but only about me, not about autism in general, because it turned out that many of my fellow Autistics got different scores. I have not yet figured out if my low score and my moderate alexithymia are a correlation — I haven’t had a chance to compare others’ scores on the imagination test to their levels of alexithymia.

When I googled just not to find the test again, I discovered that my friend, Cynthia, wrote a blog entry about taking the imagination test on a different web site that gives statistics for tests based on how many people have taken them and whether the takers are Autistics or not. Her thoughts on the test are quite interesting (and I was excited to see that she used to daydream about Lost in Space, too!) and I recommend taking a look at her blog entry on the topic of autism and imagination and the alexithymia imagination test.

I hope no one is disappointed that I explored this paragraph from the DSM-5 solely in relation to my own life experience as an Autistic. I really didn’t have much to say about the paragraph otherwise (and it’s been a tiring couple of days so I may have missed something obvious I could have talked about.) I’d love to see comments and discussions of this paragraph in light of how *you* or *your children* fit or don’t fit into the traits described.

When I start writing on one of these snippets from the DSM-5, I’m never sure where it’s going to go. This one went to reminiscing about my own life. I also never can predict where comments and discussions are going to go, so if this entry moves you to talk about something entirely different, please feel free to share that, too! As always, everyone’s comments will be approved (although sometimes there’s a time lag) except for anything that is attacking or abusive. You don’t have to agree with me or with anyone here, but you do have to play nice. Thanks!

Autism and the DSM 5: Part 8: Development and Course: Part 2

picture of book pages

DSM 5? I’m an open book about this book I’ve opened. [image description: photo of the pages of an opened book]

Autism and the DSM 5: Development and Course: Part 2
originally published October 4, 2013

Part 1: Losing Your Diagnosis? 
Part 2: Diagnostic Criteria: Section A
Part 3: Diagnostic Criteria: Section B
Part 4: Diagnostic Criteria: Section C
Part 5: Diagnostic Criteria: Section D
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: Development and Course: Part 1
Part 8: (you are here)
Part 9: Development and Course: Part 3
Part 10: Development and Course: Part 4

I’ve been very tired the last couple of days and generally having a hard time, so I apologize for taking so long to get to this post. Don’t worry, I’m still very into this series and very excited to be writing about this topic.

Paragraph 2 in the Development and Course section of the commentary in the autism spectrum disorder entry of the DSM-5:

The behavioral features of autism spectrum disorder first become evident in early childhood, with some cases presenting a lack of interest in social interaction in the first year of life. Some children with autism spectrum disorder experience developmental plateaus or regression, with a gradual or relatively rapid deterioration in social behaviors or use of language, often during the first 2 years of life. Such losses are rare in other disorders and may be a useful “red flag” for autism spectrum disorder. Much more unusual and warranting more extensive medical investigation are losses of skill beyond social communication (e.g., loss of self-care, toileting, motor skills) or those occurring after the second birthday (see also Rett syndrome in the section “Differential Diagnosis” for this disorder).

I think this paragraph is especially interesting because there has been a lot of debate in the autism community about whether regression actually occurs or whether something else is going on, for example, a developmental delay causing slower progress that only starts getting noticed when a significant number of milestones are missed.

I also think some people have a lot invested in the “regression vs. slower development” argument because of how it feeds into the vaccine argument. Regression is often seen as evidence to support the vaccines-cause-autism theory because the typical age of regression and the age of lots of vaccines and boosters tend to coincide, making lots of parents feel that their child was just fine until s/he got the vaccines.

But with the DSM-5 declaring that regression is a genuine thing that actually occurs, it weakens the vaccine argument because so many of those children who appeared to be having an abnormal regression when they got their shots turn out to have been having a normal (for autism) regression that just happened to be at the same time as the shots.

For a long time, I was undecided as to where I stood on the issue of autistic regression as far as whether it was something that actually occurred or something that appeared to occur because a child was developing slowly and it took a number of months before the divergence of the Autistic child’s development was noticeable in comparison to the non-autistic children’s development trajectory. (I never accepted the vaccine theory, even before Wakefield was discovered to have lied about his data and lost his license to practice medicine as a result of it.)

What convinced me that regression is a real thing was getting to know two different Autistic people who have fallen into the category described in the last sentence of this paragraph: regression after age two. Both people I know had significant autistic regression in their teen years (and both were repeatedly accused of being frauds because regression after age two is so rare. So I am glad to see the DSM-5 acknowledging that late regression can, indeed, occur and hope this helps my friends when they are criticized for not being able to do as adults many of the things they could do as pre-teens.)

There is scientific evidence of late autistic regression before the DSM-5 and it is probably some of that research that informed the committee that made the decisions for the ASD entry and commentary in the DSM-5. The big one I always come back to is a 2000 article by Lorna Wing and Amitta Shah in The British Journal of Psychiatry. The article is titled “Catatonia in autistic spectrum disorders” and it discusses a phenomenon the authors observed — a small percentage of Autistics develop increased catatonic behavior and apparent loss of skills around age 10 to 19. Some of those who fit this profile were previously diagnosed with Asperger’s Syndrome, indicating that the change in observed behavior can be quite large in these cases.

The two people I know who fit this profile (and fit it uncannily well, I should add) do not like the word “regression” to describe their observable changes. I agree with their reasons for displeasure with the term, but will continue to use it for this blog entry because it is the word used in the DSM-5 and I don’t want to cause confusion by changing terms. But do be aware that many Autistics find it painful to be described in those terms.

And never assume that an Autistic doesn’t hear what you say around them. There have been cases of Autistics who were uncommunicative until they were in their 30s and were accidentally left near a typewriter, at which point they revealed that they could communicate, that they had somehow picked up written language with it never being taught to them, that they had heard and remembered everything that had been said to or about them, and that a lot of the assumptions people were making about them were very damaging.

So assume that everything you say is heard and understood and try to remember that some ways of referring to people hurt. Calling an Autistic’s change in observed behavior “regression” can make a person feel like their growth is not recognized, only their deficits. And it can carry undertones of a message that the individual is not what they should be or what was desired from them. These may seem small nits to pick, but if you are the one who is being misinterpreted and talked about right in front of you all the time, issues like the words and concepts that are being used to describe you are huge.

At any rate, back to the idea of regression in later life. Because I know two people who have experienced this, I was already well-placed to accept what the DSM-5 has to say about the existence of regression. If I know people who “regressed” in their late teens, why shouldn’t I believe that some autistics “regress” at age two or so? The development of an Autistic person is not a linear progression and our severity levels, as mentioned earlier, can be quite fluid. So I fully accept this paragraph of the Development and Course section of the ASD discussion in the DSM-5 and I am pleased to see a mention of later regression. While the discussion doesn’t make it clear that this later regression can occur in one’s teens (or in one’s thirties or forties, I should add. I have seen Autistics lose skills temporarily in the wake of a life tragedy in their middle age years) It does explain that this loss of skills can happen after age two and that’s going to be very beneficial for the many Autistics who don’t precisely fit the standard narrative.

To take this from a theoretical level to a personal level, I have lost skills at different times in my life. Regular readers will already know that I, like many other Autistics I know, sometimes lose the skill of speech (although I am still able to write or use ASL during times when I am unvoiced.) That is my most frequent encounter with shifting skill levels, but I do have times when I stim more and times when I stim less. I have times when I forget how to cook or even forget how to stay on task enough to eat. I frequently forget how to get from point A to point B (a state worsened by my topographical agnosia in which familiar places can look foreign, especially if I am approaching them from a direction I usually don’t.) I have times when my self-regulation of emotion skills drop out. I have times when it is practically impossible for me to understand human speech and other times when I have problems with understanding spoken language but the problems are small. I also, though I do not have and have never experienced catatonia as described in the Wing and Shah article, have days where my sense of balance is completely obliterated and I fall down several times in the course of living a normal day (and other days when my balance is strong enough to do yoga asanas.)

My skills are uneven and they can come and go and I’m not always aware of the triggers. I’d like to see a discussion in the comments of “regression”, both temporary and apparently permanent. Did your kid “regress”? What age and how? (And I’m sorry for any pain you feel from watching your child experience those changes. As much as we don’t like being described as “regressing” I am aware of how stressful and painful it can be for a parent to watch us go through these things and similar things Autistics regularly experience.) Have you “regressed” in your autism? How do you feel about it?

I think this is an important topic and I’m glad to see the DSM-5 team opening the discussion of autistic regression. Thank you for reading and I’m looking forward to any discussions that crop up in the comments for this entry.

Autism and the DSM 5: Part 7: Development and Course: Part 1

picture of book pages

DSM 5? I’m an open book about this book I’ve opened. [image description: photo of the pages of an opened book]

Autism and the DSM 5: Development and Course: Part 1
originally published September 30, 2013

Part 1: Losing Your Diagnosis? 
Part 2: Diagnostic Criteria: Section A
Part 3: Diagnostic Criteria: Section B
Part 4: Diagnostic Criteria: Section C
Part 5: Diagnostic Criteria: Section D
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: (you are here)
Part 8: Development and Course: Part 2
Part 9: Development and Course: Part 3
Part 10: Development and Course: Part 4

Okay, I’ve had a nice rest and I launched my new book (so exciting!) so it’s time to get back to the DSM-5. I know I’m skipping around a little bit, but I want to go through the commentary section about Development and Course of Autism next. This section has seven paragraphs and I’m going to take them one by one. So here’s the first paragraph in that section:

The age and pattern of onset also should be noted for autism spectrum disorder. Symptoms are typically recognized during the second year of life (12-24 months of age) but may be seen earlier than 12 months if developmental delays are severe, or noted later than 24 months if symptoms are more subtle. The pattern of onset description might include information about early developmental delays or any losses of social or language skills. In cases where skills have been lost, parents of caregivers may give a history of a gradual or relatively rapid deterioration in social behaviors or language skills. Typically, this would occur between 12 and 24 months of age  and is distinguished from the rare instances of developmental regression occurring after at least 2 years of normal development (previously described as childhood disintegrative disorder).

First sentence: yes, age and pattern of onset are important. Age is crucial, since autism is a congenital condition (in other words, something you’re born with.) As we talked about here before, though, autism often goes unnoticed in earliest life. The commentary attributes that to the severity or subtlety of the delays and symptoms, but for those from my generation there is another element to that. My symptoms were quite noticeable. I spent most of my childhood in therapy. It was quite obvious that *something* was going on. If I had been born 40 years later than I was, I surely would have been diagnosed Autistic in childhood.

But many in my age group were not recognized, even when our symptoms were not subtle, because there wasn’t as much knowledge back in the Sixties and Seventies as there is today. Yes, obviously some people got diagnosed properly back then — for example, Temple Grandin or Daryl Hannah. But most of us were just confusing to our parents and the professionals who examined us. This is because the understanding of how autism manifests was more limited back then, not the full spectrum we have today. For some examples, see this British article from 1966 or this 53 minute documentary from 2003 about parenting a child with autism in the 1950s and 1960s. (The documentary needs a trigger warning to Autistics for talk of a child being “gone” or “lost” after signs of regressive autism appeared. And also a trigger warning to parents of Autistics for accusations of parents as causing their child’s autism.)

Half-way through the 2003 documentary, we meet a clearly Autistic adult whose mother says that the doctors refused to diagnose him back then because the family was African-American and not upper-middle class and highly educated. Fascinating. The way you see autism depicted in the 1960s will be very familiar to you but you will also recognize that it’s only one aspect of what we understand autism to be today.

The documentary will also show why people of my generation did sometimes get diagnosed but their parents rejected the diagnosis — since autism was blamed on the parents back then, particularly a “Refrigerator Mother.” So, often, a person my age who was struggling and was diagnosed with autism ended up removed and brought to a new therapist in a sort of “diagnosis shopping” enacted by parents who couldn’t bear to accept the blame that was so unfairly being leveled at them for their child’s difficulties.

Something else interesting to notice with the Refrigerator Mother documentary: the children were all very similar but the adults they grew up to be are so different. I find that fascinating and I think it indicates how much more study we need into autism across the life span so that we can understand outcomes better and maybe even eventually predict outcomes.

The rest of the paragraph: I have talked to parents who claimed they knew “something was up” with their child (who later turned out to be Autistic) from the day the child was born. But most children aren’t spotted until they are a couple of years old. Some slip through the cracks a little longer but almost all of us displayed clear symptoms by the time we were school age.

One last thing to note: the commentary says that it is rare to appear to regress after age two, but it does happen. I have noticed that the loss of skills, ability to cope, and functioning can happen at any age. All those who regress show signs of autism from the beginning, but some people go through a so-called regression as children, some at puberty, some in mid-life, often due to the stress and burn-out associated with a life-time of struggling to “fake it” as much as possible. The goal of normalization seems great on first glance — the goal of making an Autistic person “indistinguishable from their peers.” But what more and more people are starting to realize is that normalization comes at a price.

It takes a great deal of effort to keep up a façade of normality and it wears on a person over time. I have lost some of the function and coping I used to have in my twenties because of the exhaustion and burn-out of trying to “hold it together” all these years. I have struggled to try to “look normal” in public for so long now that it’s a habit. I work to suppress my more unusual behaviors and only let loose when I am alone and can rock, pace, tic, spin, and otherwise stim as much as my body needs me to.

Trying to hold it together is hard work and I have depleted myself over the years. I find it very difficult to go out in public at all and hard to stay out in public for long stretches of times. To some, I might appear to have become slightly “more autistic” than I used to be and it might even be seen as a regression, but the skill, coping, and energy losses are solely due to the great toll that attempts at appearing normal have on me.

I think many of the cases of what is called “late regression” are just as likely to be cases of “burn out” where a person had tried to function like everyone else and finally couldn’t hold the act any longer.

So there’s the first paragraph of the development section! I’ll be back next time with a discussion surrounding the contents of the second paragraph of that section. There is still a lot of DSM-5 material to work through, so I think this blog series will be going on for quite a while. With that in mind, I hope you all are still enjoying it! I know I’m enjoying thinking and writing about these things. Thank you for reading and thank you in advance for any comments.

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