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It should be pretty obvious to my readership that I have had trouble updating this blog. Quite frankly, I have been putting my energy into other areas of my life and I just don’t have the energy to post here very often. However, it is absolutely imperative that I address what’s going on in the USA right now regarding autistic people. I need to do my part to spread the word that the United States is no longer a safe country for autistic people.

Recently, Trump-appointed US Secretary of Health and Human Services director Robert F. Kennedy Jr.* has made several concerning statements about autism. Regarding autistic people, he said in a speech:

“These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.”

He also said that autism “destroys families” and called it a tragedy. Basically, all the same disgusting rhetoric autistic advocates have been fighting against for decades, but now being spewed from the federal government.

These statements were so egregious that the Autistic Self Advocacy Network and Autism Speaks both put out statements against it. Read that again. ASAN and Autism fucking Speaks (who, ironically, are the progenitors of a lot of RFK’s disgusting rhetoric) are on the same page with this one. That’s in the same category of absurd as Donald Trump and Bernie Sanders coming together to stand in solidarity on an issue. Hell has frozen over. That’s how bad RFK’s statements were.

Of course, the statement quoted above is factually wrong. Many autistic people were quick to come out and clarify that they have done those things. I am autistic, with a formal diagnosis, and I have done all of those things. And before you defend the statement as somehow only referring to “low functioning” autistic people (despite being used alongside the rising diagnostic rates that reflect all autistic people), please be assured that I am personally acquainted with people who have very high support needs (some nonspeaking) who have done those things as well.

Autistic Americans are doctors, lawyers, engineers, and scientists. We are actors, musicians, and authors. Autistic people have helped see America through our greatest moments and helped pull us out of our lowest of lows. RFK didn’t just land on Earth in a spacecraft from Mars. He is certainly aware of this. He just won’t let the truth get in the way of peddling his brand of conspiracy nonsense.

But here is where things start to get very scary. Yesterday, RFK announced he will be launching an “Autism Registry” to track Autistic Americans. Supposedly this will be used to try to find the reason behind the “autism epidemic” (that doesn’t exist because we know why autism diagnoses are rising – it’s due to better diagnostic techniques). Of course, following the antithesis of the scientific method, RFK thinks he already knows the answer. He thinks that by throwing taxpayer dollars at it he’s going to prove once and for all that vaccines cause autism, an idea which has been thoroughly debunked thousands of times. This is a bit like a flat-Earth conspiracy theorist being appointed head of NASA and then directing millions to trying to prove once and for all that the Earth is flat.

Wasting millions of taxpayer dollars on trying to accredit conspiracy theories is bad enough. But might I remind you that RFK has also proposed sending people with psychiatric disorders to “wellness farms.” The same man who wants to imprison people with mental health problems in forced labor camps has now directed the creation of an autism registry. The man who almost certainly thinks autistic people are better off dead than alive wants to identify and track autistic Americans. Now, autism isn’t a psychiatric condition, it’s a neurodevelopmental disability. But forgive me for assuming that the man who has proven he is willing to ignore reality to further his agenda would just conveniently forget that little fact.

If you’re an autistic American and you’ve ever had a formal autism diagnosis, ever had an IEP at a public school, ever received government assistance, or ever been prescribed medication under the broad umbrella of “autism” you are now wearing a yellow Star of David, useful for discrimination and even government persecution. And that is why the United States can no longer be called a safe place for autistic people, if it ever was. And it won’t be as long as this lunatic is within 20 feet of a federal building.

So here’s my message to autistic Americans or anyone with an autistic American relative: you need an exit plan. You need to be prepared to flee the country if need be. Start saving money if you can. Stay vigilant, watch the news for further warning signs, and be ready to go at a moment’s notice. Yes, it’s a very scary thought. But this is what’s necessary to protect yourself should the worst come to pass.

I’m not advising anyone to panic. Thinking rationally, I think the most likely scenario is that everything in this arena is going to be fine, at least eventually. There are lots of barriers that have to be overcome before anything tragic happens, and that starts with the judicial system. Perhaps needless to say, using medical records to compile a list of autistic Americans is of questionable legality, and the Judicial Branch (designed to be a check against the power of the Executive Branch) has so far been standing firm against illegal actions taken by the Trump regime. Additionally, one of the benefits of living in a federal system where states operate in many ways like independent nations themselves is that state governments can stand up against an overreaching Executive Branch and offer sanctuary to those being persecuted (as we’ve been seeing with immigrants and transgender Americans). So internal migration to safe states is also a possibility.

Personally, I haven’t changed the general outline for my future plans. At least not yet. This fall I will be starting as a PhD student at the University of Chicago, and I am hopeful I will be able to weather this dark time and graduate in the next five years. Our country has made it through dark times before, and I am confident the work of patriotic activists can pull us through again. But the fact that I even need to have an escape plan has broken my heart. I never thought I would ever have to contemplate the possibility of being a refugee from the United States, a nation that is supposedly a developed first-world democracy with strong protections for human rights, and yet here we are.

This is also why I have been fighting for over five years now to combat this sort of harmful rhetoric against autistic people. Because when you let such a cancer fester it opens up the opportunity for real people to face real harm. And now it has made its way all the way to the US federal government. God help us.

I am going to leave you with this excellent Tweet from Senator Elizabeth Warren, because she absolutely hits the nail on the head here. I am not endorsing any candidate for future elections right now, but let me just say that this is the type of rhetoric autistic Americans deserve from our government. Not the harmful lies being spread by RFK Jr. And any future candidate who wants my vote better be taking notes.

*I’d like to note that RFK Jr. has zero training in medicine, biology, pharmacology, epidemiology, biochemistry, psychology, or any other field that would be relevant for his position. I, 23-year-old Quincy Hansen with a Bachelor’s degree in Biology, am more qualified for his position than he is.

Preface: The “Lost Continent” of Madagascar

To an evolutionary biologist, there is little more on the entire planet earth that is more exciting than isolation. When a population becomes split off from its kin, natural selection and genetic drift are free to work independently, generally creating organisms and whole ecosystems which exist nowhere else. The lifeforms created are often astounding compared to the rest of the world’s norms: look at cave salamanders or vampire squids, isolated in inaccessible caverns or by the crushing depths of the oceans. Although it can occur in many ways, islands are the most prominent sites of biological isolation, as water acts as a strong, though not impenetrable, barrier to migration by land plants and animals. The unique fauna of the Galapagos islands served as a critical source of data for Charles Darwin and other scientists as evolution by natural selection was being discovered and tested for the first time, and the uniqueness of island fauna continues to inspire and puzzle biologists to the present day.

However, about 440 kilometers off the coast of Mozambique in the Southern Hemisphere portion of the Indian Ocean lies what I would argue is the world’s most special island: Madagascar. The island of Madagascar is a veritable Lost World; a natural laboratory where evolution after the extinction of the dinosaurs took a different path. Many different kinds of biologists make their careers on Madagascar. It’s a place to test hypotheses and make unique observations for ecologists, zoologists, botanists, geneticists, evolutionary biologists, conservationists, and paleontologists (the fossils organisms are just as weird as the living ones) alike. Over 56% of its birds, 81% of its freshwater fishes, 85% of its plants, 95% of its mammals, and 98% of its reptiles are endemic, meaning they are found nowhere else on the planet1,2 (extremely high endemism in invertebrates, particularly insects and arachnids, is also present but unfortunately woefully understudied).

Madagascar is a land of giant hissing cockroaches, giraffe beetles, and otherworldly spiders. It’s a land of giant chameleons, flamboyant Phelsuma geckos, and the strangely shaped leaf-tailed lizards. A place where many native plants look like they should be growing on the dunes of a planet from Star Wars instead of the planet Earth, and a place called home by tiny hedgehog-like mammals called tenrecs whose closest relatives are actually elephants. Dogs and cats, staple carnivores everywhere else in the world, are lacking from Madagascar’s native fauna. Instead, the forests and deserts are stalked by a unique group of carnivores found nowhere else in the world called the euplerids: a family most closely related to mongooses yet including members like the cryptic fossa, the world’s only carnivore which specializes in hunting primates. This is to say nothing of the island’s most charismatic fauna: the lemurs. Lemurs are a very diverse lineage of ancient primates who fill an inordinately wide amount of niches on the island and are what most people think of when they envision Madagascar. Although lemurs do have living relatives in the bush babies from mainland Africa and the lorises of Southeast Asia, you won’t find a wild lemur anywhere else in the world but on the island of Madagascar.

In addition to its unique fauna, Madagascar seems to break every rule of biogeography, or the expected distribution of species based on their ancestry. Madagascar is the only place outside of the Americas where you can find a member of the cactus family thanks to a plant called Rhipsalis.3 Unlike just about every other species of cactus, Rhipsalis grows as an epiphyte around the trunks of other trees in humid rainforests. The traveler’s palm, a national symbol for Madagascar as a nation, is most closely related to plants which grow in South and Central America.3 And the only places in the world you’ll find Boa genus snakes living in the wild is South America and Madagascar.3 Seeing families of plants and animals on Madagascar which otherwise only live on a continent on the other side of the world is tremendously strange, and to this day leaves biologists scratching their heads (the most common line of thought is that these families used to be more widespread millions of years in the past, only for them to go extinct everywhere except the New World… and Madagascar).

It is common for islands to have unique species of plants and animals. It is significantly more rare for islands to have entire unique families of life, of which Madagascar has no shortage. Both the long history of Madagascar’s isolation and its size contribute to this anomaly. Madagascar has been isolated as an island for over eighty million years, allowing ample time for unique lineages to evolve and for refugees of ancient clades now extinct everywhere else to persist. Madagascar is also a rather large island. It covers more area than every country in Europe except Ukraine and Russia and every state in the USA except Texas and Alaska. Tack on the fact that Madagascar is surprisingly mountainous, and you end up with a variety of climates and habitats. The north and east coast of the island is composed of humid tropical rainforest. The west coast features dry forest and the famous towering baobab trees. In the far south you’ll find dry desert scrub and strange thorny plants. Madagascar’s size and long history of isolation means that its patterns of endemism and species distribution is much more similar to an entire continent than to an island.3 It truly is an entirely different world.

And although my specialty does fall within the realm of biology, I cannot in good conscious go without discussing the uniqueness of Madagascar’s culture and peoples as well. Madagascar’s culture is unlike any other, with a mix of influences from both Southeast Asia and East Africa. It is thought that the island was not populated by humans until around 2,000 years ago, about the same time as the birth of Christ, which is shockingly recent given its richness of resources and proximity to mainland Africa.3 Nonetheless, Madagascar features 18 distinct ethnic groups sharing a common language unlike any other.3 Unfortunately, a history of aggressive European colonialism has been disastrous for the country’s development (Madagascar only became independent from France in 1958), and it remains one of the poorest nations in the world.

Opportunity Abroad

If you read through that first section, thank you very much and I hope you found it intriguing. Just last December I graduated from Colorado State University with my Bachelor of Sciences degree in Biology, so now that I have some sort of official credential it feels good to be able to utilize it, even if that is through educating internet friends and strangers!

Now, you’re probably wondering why I just wrote a short essay on why Madagascar is so interesting. It’s not because that’s my new special interest, nor is it because I’ve been taken hostage by King Julian and coerced to write or else “Move It Move It” for eternity. Instead, I am writing because this last July I had the truly once-in-a-lifetime opportunity as a student at Colorado State University to take part in a study abroad program in Madagascar in order to study the island’s lemurs and other fauna and learn field research skills in wildlife biology. The opportunity to study abroad is a relatively common and highly sought-after experience for many university students, and it was an idea that I toyed with throughout my time as an undergraduate student. Studying abroad is a fantastic way to enrich one’s educational experience, allowing oneself to develop cultural awareness, network globally, and learn skills that can only be learned in specific places. For these reasons, it was important to me to study abroad as an undergraduate student.

However, as an autistic student I face many additional barriers to studying so far away from home than many other students. I rely on a close-knit support network which would not be as readily available overseas. Keeping up with social expectations is already difficult at home, and would be even more so in a place where the culture is foreign. I have specific sensory needs that could be difficult to accommodate in another country. While I believed these challenges could be overcome with careful planning, being disabled was a serious consideration when planning to study abroad.

For many semesters I had been considering studying abroad in the Sydney area of Australia, as Colorado State University has an exchange program with Macquarie University and the autistic community in that region fantastically supportive and one I am very acquainted with (via organizations like the I CAN Network and Reframing Autism). However, the multi-month length of stay that would entail made me very anxious, and I hoped to find a shorter-term program.

In March of 2024 my wish was granted when I learned that the Biology department would be taking a group of students to the rainforests of eastern Madagascar for a wildlife field biology course centering around lemurs, Madagscar’s most charismatic animals. Students would embark on a three-week trip to study lemurs, rainforest conservation, and research skills within the field of wildlife biology while having the opportunity to stay at a research station in Ranomafana National Park. This opportunity seemed right up my alley, and I quite quickly put in an application and was accepted into the program.

Studying abroad in Madagascar is one of the most rewarding educational experiences I had as an undergraduate student, and I consider it to be a truly once-in-a-lifetime experience. However, it was also one of the most challenging. Despite the fact that this program seemed nearly tailor-made to my interests, studying abroad as an autistic student still comes with unique challenges, particularly in a nation where many of the creature comforts I rely on to ground myself were often unavailable. Nonetheless, I managed to complete my travels, pass the course, and learn more about myself and the world around me in the process.

So here I am, finally ready to share my experiences with my audience in a series of blog posts. By blogging about my experience here, there are several things I hope to accomplish:

1. Teach readers about Madagascar. It truly is one of the most unique and fascinating places on earth, but also one of the most imperiled and misunderstood. Although I think most people have heard of Madagascar, it seems few people know much at all about it. I think this is highly unfortunate, and I’d like to help change that.
2. Share about the challenges I faced while studying abroad, in particular those that relate to autism. I hope that I can help autistic students learn a bit more about what to expect when studying abroad, and tips for how to make the whole experience go more smoothly.
3. Encourage other autistic university students to study abroad. Education abroad truly is one of the most transformational experiences one can have in their education, but the prospect can seem daunting, especially for those whose brains work differently. However, I strongly believe that autistic students should be able to access these experiences as much as anyone else. By sharing my experiences and what worked for me, I hope I can encourage other autistic students to pursue education abroad.

This will be a multi-part blog series. In each part, I hope to open with a brief introductory “lesson” of sorts about Madagascar using information I learned as part of the class. Then, I will share my experiences in narrative format, highlight challenges along the way and how I was able to overcome them, as well as interesting anecdotes and tips for those looking to pursue education abroad or travel to foreign countries alike. This is the first time I have done a multi-part series like this on this blog, and I have a lot to share. So, please take your time when reading through!

I’m excited to share with you this journey! I hope in some small way I can take you back with me to the amazing island and nation of Madagascar and inspire you to travel, pursue education abroad, and learn more about the world around you. Tongasoa (welcome!) to this series, and misaotra (thank you) for reading. Alefa (let’s go)!

My travel to Madagscar was made possible in-part via scholarships offered by the Boettcher Foundation and the Benjamin A. Gilman International Scholarship Program. This blog series will serve as my follow-on service project as required by all Gilman Scholarship recipients. University students in the United States interested in studying abroad are encouraged to apply to the program at www.gilmanscholarship.org.

Citations

1. Antonelli et al. (2022). “Madagascar’s extraordinary biodiversity: Evolution, distribution, and use.” Science, vol. 37B, issue 6623. https://www.science.org/doi/10.1126/science.abf0869
2. Goodman and Benstead. (2005). “Updated estimates of biotic diversity and endemism for Madagascar.” Oryx, Vol. 39(1). https://www.cambridge.org/core/services/aop-cambridge-core/content/view/85CD78816E9A2E1718DC2FCA8F615C1C/S0030605305000128a.pdf/updated_estimates_of_biotic_diversity_and_endemism_for_madagascar.pdf
3. Tyson (2013). Madagascar: The Eighth Continent. Bradt Travel Guides. ISBN: 9781841624419

One aspect of autism that I find particularly interesting is that it’s almost always a package deal, a nifty little giftbox filled with little quirks and tied up with a bow. What I mean by this is that autistic people almost always have co-occurring conditions and diagnoses in addition to autism, and frequently it’s these co-occurring conditions (rather than autism itself) that makes living a challenge for autistic people. In fact, co-occurring conditions are so common with autism that these conditions are often erroneously conflated with autism in a fallacy called diagnostic overshadowing, which I wrote about way back in 2019.

In today’s post, I’d like to focus on one particular diagnosis that’s made much more frequently in autistic people than in the general population: Ehlers-Danlos Syndrome, or EDS for short. Ehlers-Danlos Syndrome affects the structure of the proteins comprising connective tissues, quite literally altering the structural integrity of the body. What makes the connection between autism and EDS so interesting is that autism refers to a difference in neurological development while EDS impacts connective tissue. Most of the conditions which co-occur with autism relate to the nervous system, which makes a certain degree of sense, so why does EDS show up so much more frequently in autistic people? (I will not answer this question in this post, but there are several interesting hypotheses out there if you have a biology background and would like to do some research on your own).

Of course, EDS and autism are separate conditions and you can certainly have one without the other. However, since so many autistic people also have EDS I’ve thought for a long time that it would be useful for my readership to learn a bit more about it. The thing is though, I do not have EDS myself, and so following the principle of “Nothing About us Without us” I would not feel comfortable writing about it on my own. So for this post, I reached out to my friend Haley, who does have Ehlers-Danlos Syndrome, to share her perspective on EDS and disability advocacy in general.

I met Haley last June at the University of California Davis during the American Arachnological Society conference where we were both presenting research we had been involved with. Haley is not autistic, but identifies as having ADHD and of course Ehlers-Danlos Syndrome. I was so excited to meet another neurodivergent undergraduate my age who was also working on arachnid research, and I was even more excited when I learned that Haley was also interested in fossils and paleontology, so some sort of friendship was inevitable I think. Plus Haley’s just an all-around awesome person who is a pleasure to talk to.

Here’s what Haley had to say about her experience living with Ehlers-Danlos Syndrome:

My questions will be shown in italics and Haley’s responses will be given in regular text. Text in [square brackets] was added by me for clarity.

So what is Ehlers-Danlos Syndrome? Can you describe it in your own words?

Ehlers-Danlos Syndrome is a connective tissue disorder. There are different types, (I’m not sure how many actually) but I think the most common type is type-3, which is Hypermobile EDS. The diagnostic criteria for it are that basically there’s a scale where you are assigned points based on what things you can do. Those things are things like being able to fold your thumb back to your arm (that’s one point), being able to bend your pinky backwards more than ten degrees (that’s a point), being able to touch your hands to the floor while keeping your knees straight (that’s a point). You can do more of those things when you’re young, clearly I’m aged at the ripe old age of twenty-one, so I’m not as flexible now. The way I got diagnosed was because I had “slippy joints,” meaning I’d have a lot of subfluxations, which is basically just a partial dislocation, and that’s kind of a very good clue [that one has EDS].

You mentioned already joint dislocations. What are some other ways that having hypermobility (EDS) affects you day-to-day?

What aspects of EDS affect you differs from person to person. I think pain is definitely one that affects me. For instance, getting in and out of my car can lead to dislocations, which are painful. Or if I step wrong my ankles are very unstable. When most people walk their ankles remain stable, but mine wobble every I take a step. That means I roll my ankles a lot, I sprain my ankles a lot, so it means existing in the world is a little more precarious. When I was a kid I’d just fall down the stairs all the time because I was clumsy.

Are there any ways that Ehlers-Danlos affects you which are not obvious? Ways that a person may not think about if they had only heard the definition of the disorder?

Yeah, so the hypermobility point isn’t really what affects me most. Ehlers-Danlos comes with a lot of co-morbidities because you have connective tissues in every part of your body. I have heart issues, I have to be monitored every few years by my cardiologist. I have something called SVT, which means my heart starts beating really fast sometimes (which can be kind of scary). I have something called gastroparesis, which I’m not sure of the exact prevalence, but Ehlers-Danlos can certainly be a cause for gastroparesis. This can affect my life in really negative ways. I can’t eat or drink anything without being really nauseous because it causes my stomach to just not be able to digest food as fast.

Something that’s been really deeply impacting my life recently has been migraines. People with EDS have a higher number of migraine days and their migraine symptoms are a lot more severe. I actually had a really terrible migraine all day today, and I have midterms that I have to finish and I just couldn’t do it because I had to lay in bed all day. It’s debilitating.

There are so many other things too. I’d be really curious to see what the prevalence of ADHD is in people with Ehlers-Danlos syndrome, because if you say there seems to be a higher prevalence of EDS in autistic people, I mean there’s got to be some connection there.

Has having EDS ever affected your interpersonal relationships with either friends or romantic partners, and if so how did you work through that?

You know, I was just talking about this with someone. Having days where you are really negatively impacted, like you can’t go out and you can’t see people, really impacts me. My gastroparesis makes it really difficult to eat sometimes, and there are perceptions that if you don’t eat people will think there’s something wrong, I get a lot of people who say things to me like ‘certainly you must have an eating disorder.’ That’s not the case, but it’s created a lot of anxiety about being around other people for long periods of time. If I get sick or if I get nauseous that’s a lot of anxiety. People have really impacted my decision to get things like mobility aids on days where I really have difficulty walking, or days where my nausea is so bad that I can’t stand for long periods of time. I wish I could say that I was impervious to other people’s judgements and other people’s ableism and the fear that seeing me, twenty-one years old, with a cane would impart some sort of judgement on me has been a very real anxiety.

What strategies have you used to overcome these anxieties relating to how other people perceive you?

A lot of education. A lot more people are being diagnosed with Ehlers-Danlos than there used to be. It used to be considered an under-diagnosed illness. When I got diagnosed when I was fourteen nobody knew what it was, but now I can go up to someone and explain ‘oh, I have Ehlers-Danlos Syndrome’ and if they don’t have it I’ve found it’s very likely that they know someone else who has it. The most prevalent group that gets diagnosed is young women around my age, and so I think there has been an increase in solidarity from that standpoint. But at the same time I think you see the same sorts of things with increases in autism diagnoses and increases in ADHD diagnoses. A lot of people are like ‘oh that’s fake, everyone’s getting diagnosed with that nowadays’ and people think that doctors have been a little frivolous with their diagnoses, and so I think that’s been something that’s been tricky to navigate.

What do you think is the state of Ehlers-Danlos awareness or Ehlers-Danlos acceptance? What sort of advocacy work do you think still needs to be done regarding the condition?

I think it’s really difficult to look at it just from the standpoint of Ehlers-Danlos, because disability in general is something that isn’t talked about very often. At any point in someone’s life you could become disabled, and that’s a really scary process. That’s something I’ve had to come to terms with, that I’m going to have to live like this for the rest of my life. I think that awareness of what we would consider invisible disabilities has really taken off in recent years. On my college campus at least I’ve been seeing a lot more people my age using mobility aids, and I think that has made me consider using one whereas two years ago I would never have even considered it out of fear of ‘what’s that twenty-one year old doing with a cane?’ you know?

There’s probably a reader (or more likely, several readers) out there with EDS. Do you have any words of encouragement or advice for them?

I think you’ve got to put your comfort first, and that’s something that’s been hard for me: learning to put your needs above school, above your friend’s wants. This semester has been a practice in sleeping enough, drinking enough water, eating enough, and every single doctor tells you to do those three things, but actually doing them is really difficult when you have multiple disabilities. Just remembering that while it can’t be cured it can be managed, and some people can manage it so well that they may not be symptomatic at all, but even if you can’t get to that point it’s about being mindful to live as much as you can with what you’re given. I think that that can be hard, especially when you’re living with disabilities. It’s hard to be inspirational because it sucks a lot, and you sort of just have to go with what you’re given so you can go on to have a wonderful and fulfilling life.

Hello, dear readers! I am very excited to announce that my book Shake it Up! How to be young, autistic, and make an impact was released just yesterday and is now available for purchase. I am so very excited to finally see this book, after multiple years in the making, finally be released to the world. I hope that this book will make a huge difference in the autistic community and will go a long way in inspiring the next generation of autistic advocates.

What is Shake it Up?

Shake it Up! is a first-of-its-kind advocacy guide written specifically for autistic teens and young adults. Because of our unique and fantastic brains, autistic people are in a prime position to be advocates and activists. We often care deeply about the world, have intense empathy, are passionate about what we believe in, and can offer unique perspectives on issues we care about. And yet despite this, there are few resources out there which cater to helping autistic young people find our voice. Shake it Up! aims to change that, by providing insight, advice, and encouragement for autistic teens and young adults who’d like to make a difference in their community. Oh, and I can’t forget to mention that Shake it Up! includes interviews and case studies from eleven young autistic advocates and activists from around the world, providing all sorts of unique and fascinating insights and advice from the world of activism as an autistic young person.

Why should I read Shake it Up?

Obviously this book is aimed at autistic teens and young adults, and if you fall into this category (or know someone who does) then this book is perfect for giving you a starting point to make a difference in the world and bring about change that you wish to see. Shake it Up! is also a great read if you have an interest in autism or advocacy in general or want to hear about the activism that autistic young people from around the world are taking part in. Additionally, much of information in the book is applicable to non-autistic aspiring young activists as well, so although this work is written for autistic people it’s certainly not exclusive to us either.

Where can I buy Shake it Up?

Shake it Up! How to be young, autistic, and make an impact is available from Amazon (in both paperback and Kindle editions), the Jessica Kingsley Publishers website, and most likely whatever other online retailer you prefer to buy your books from (in the US it is available online from Target and Barnes and Noble among other retailers, for example).

The preliminary feedback we’ve been receiving for Shake it Up! has been phenomenal. Everybody I’ve personally talked to who has read the book so far has had nothing but positive feedback. The press reviews have been glowing and the book boasts a perfect five star rating on four reviews from NetGalley. Here are some of my favorite excerpts:

I would recommend this for any autistics looking to make a difference in their chosen advocacy field, whether that be related to their autism or not! The sheer amount of accessible information and not action throughout this book is outstanding, well done to Hansen.

Dorothy G.

The writing in “Shake It Up!” is notable for being beautiful, right from the first paragraph – that’s not something you expect from a non-fiction book… Honestly, this is flawless – I really hope it’s widely read, appreciated and understood.

Dearbhla M.

I can’t wait to hear what my readers think of the book, and I hope that this work can be an important resource for young autistic advocates for years to come. Let me know in the comments what you thought of the book after you’ve read it. In the coming few months I will be doing book readings and even perhaps some giveaways, so stay tuned! I do most of my announcements through Facebook these days, so if you haven’t already liked my page make sure you do so you don’t miss out.

Thanks so much for all of your time and support, it really means the world to me. I hope that in some small way I will be giving back to the community that has supported me through this book.

It’s March 1st, which means it’s once again the International Disability Day of Mourning. This is a day dedicated to mourning the losses of disabled people who were murdered, usually by parents or caregivers, because of their disability. It’s a solemn day for the disability community, and should be a solemn day for anybody who knows what it is.

I know I’ve been pretty quiet on here lately (I’ve a super busy patch at the moment), but I intend to keep my promise of publishing the names of people murdered just because they were autistic in the last year. Grim, I know. But I want to keep memorializing these people, both as a way to pay my respects and a way to demonstrate to readers the seriousness autism advocacy. The way that society views and treats autistic people matters. It is literally life or death. We as a global community urgently need to step up.

Unfortunately, I do not have the time to do a longer write-up on the significance of the International Disability Day of Mourning. But if you would like to read more, at the end of this post I will link to the previous three posts and name lists I have done on this day as well as the International Disability Day of Mourning Website.

Please take a moment of silence and contemplation as you read these names. Here is the list of autistic people murdered by their caregivers since last year:

Hezekiah Pettiford – Age 15

Peter Cuacuas – Age 7

Name Unknown – Age 16

Jax Ponomarenko – Age 5

Name Unknown – Age 9

Brian Cotter – Age 15

Liam Husted – Age 7

Darren Henson – Age 9

Hallen McConnie – Age 15

Chelsea Hill – Age 18

Connor Hill – Age 18

Mason Weston – Age 11

Richard Wix Jr. – Age 30

Kendrick Lee – Age 8

Nicole Hall – Age 8

Cara Broyles – Age 27

Ashton Yap – Age 11

Ethan Yap – Age 11

The list is longer this year than it was last year, standing yet again as a sickening reminder that we still have a long way to go. Lives stolen simply because of neurology. Let these names never be forgotten. Let the flame burn on.

Links:

Disability Day of Mourning 2019

Disability Day of Mourning 2020

Disability Day of Mourning 2021

International Disability Day of Mourning Website and Memorial

Set off the fireworks, everyone! Happy New Year!

And of course, it’s time for another Year in a Review, where I’ll list the ten most-read posts from 2021 so that anyone who happens to find this page can go see what all the buzz is about.

But first, I have a couple announcements to make, one exciting, and one more grounded.

To start with the exciting news, I am ready to finally announce an official release date for my upcoming book Shake it Up! How to be young, autistic, and make an impact. Completing the manuscript for Shake it Up! was probably my biggest achievement of 2021, and I am very excited to be bringing such resource to the world to inspire the next generation of young autistic advocates. Around this time last year, I had estimated that Shake it Up! would be released sometime in late 2021 to early 2022. What I didn’t know when I made those estimates was that publishing companies don’t just shove a book out the door as fast as they can once production is completed; instead they do a market assessment and pick a specific window to release the book in to maximize sales. So Shake it Up! will see a summer 2022 release, specifically, the second week of July. But this is an official release date, not a guesstimate, so mark your calendars! Follow this blog or its associated social media pages for updates, and when the time comes you can order your copy at jkp.com. If pre-ordering becomes available, I will announce that as well.

And now for the second bit of news, I have something a bit more personal and local. There was recently a devastating wildfire that destroyed a good portion of the northwest Denver metro area parts of the Boulder metro area in Colorado. 1,000+ plus families are spending new years without a home due to the Marshall Fire, which has turned out to be the most destructive fire in Colorado history in terms of property damage. Entire neighborhoods ablaze. Such an event is unprecedented, as though wildfires are very common in Colorado they tend to occur in isolated parts of the mountains and only threaten a handful of homes. This fire devastated a suburban area, and so has impacted many more lives. It is also highly unusual to see a fire of this magnitude in December, but was a product of the incredibly dry winter we’ve had so far. There was an unspoken consensus among Denver-area residents that living near the city meant safety from wildfires. This unfortunately has proven not to be the case.

Thankfully my family and I live in a different part of the Denver metro area, and the fire was roughly ten miles from us at its peak. I do however have former high school classmates who had to evacuate, and some are likely still unsure whether or not their homes survived the blaze. No matter where in the world you live, your thoughts and prayers are appreciated. If you are in the area and need assistance, since we are local and I know a few readers who live in the Denver/Boulder area, my family and I would like to extend a personal invitation for help if you need it. Please email me and we will see what we can do.

So with those bits of news out of the way, it’s time for the list. The ten most-viewed posts of 2021:

1. Sensory Eating is not Picky Eating
2. This April, go #RedInstead for Autism Acceptance!
3. Why You Should Not Support Autism Speaks
4. Task Initiation, Executive Functioning, and Autistic Inertia
5. The Double Empathy Problem – A Paradigm Shift in Thinking About Autism
6. Understanding Shutdowns and Autism
7. Why I can’t remember your name as an autistic person.
8. The Fallacy of Functioning Labels
9. Embrace all of your interests!
10. Understanding Meltdowns and Autism

I wish everyone a very loving, happy, and safe 2022, and I hope that wherever you are and whatever your situation is, the next year will be better.

According to the Miriam Webster online dictionary, “consent” is defined as “compliance in or approval of what is done or proposed by another” or as “a voluntary agreement.”

These are simple definitions of a common-knowledge seven letter word. And yet consent is perhaps one of the most important concepts for people of all ages to grasp. Consent is a fundamental guiding principle regarding how we treat other people, forms the basis for many ethical standards, and is something that I believe all people should be taught from a young age as something that applies to all interpersonal interactions and relationships.

As you can tell, the concept of consent is important to me. And I believe that consent applies to all people. This is why it concerns me whenever I witness people giving away very sensitive information about the autistic people in their lives away on the internet, often times tied to identifying information like a name or picture, without first asking the person in question if it’s okay.

To be fair, posting about people (particularly children) on the internet without their permission is something that happens to people of all neurotypes, not just autistic people, but it’s especially prevalent and egregious within the broader “autism community.” You see it so often. Parents share videos of their kid’s meltdowns and panic attacks publicly to YouTube and Facebook. People write blogs detailing very personal, often embarrassing, information about their autistic relatives while including real names and/or pictures. And this sort of sensitive-information-sharing happens to autistic adults sometimes as well, not just children. I’ve noticed that it’s becoming more and more common as “autism parent” blogs and YouTube channels are increasing in number, but these avenues are hardly the only culprits for this sort of posting.

Very often the people who do this defend these practices by claiming that it’s “for awareness.” But that doesn’t make it okay. Would you be okay with someone posting compromising information about you publicly on the internet, available for future employers, significant others, and friends to find later on? For stalkers and predators to even potentially find? No? Then why do you think this is alright to do to someone else?

Could you imagine Google searching your name only for a front-page result to be a blog your parents authored where they detailed all of your personal challenges for the world to read, complete with pictures and names? I know autistic people who have had this exact experience. No, their parents didn’t think to ever tell them.

Sharing about somebody’s personal details, including challenges and diagnoses, in a public setting requires that you obtain that person’s explicit consent to do so. This applies to people of all ages and abilities, by the way. I’ve heard people argue that it’s okay to share about someone without their permission because “they’re too young to give consent” or “they’re non-speaking, so they can’t communicate.” Ignoring for a moment that non-speaking does not mean non-communicating, I just want to point out that that’s not how consent works! You don’t assume that you have permission to do something until you don’t – instead you seek consent before you ask. And yes, this means that I am advocating for not sharing personal details about young children on the internet, and I absolutely stand by that. Stop posting compromising or potentially embarrassing personal information about anybody, especially autistic people, online.

Now, I understand there can be circumstances where it’s helpful to share information that could be personal or compromising to seek support, including online. The key in these situations is to anonymize the information – post anonymously, don’t give names or other identifying pieces of information, and don’t include any pictures that includes anybody’s face. Once it’s on the internet it truly is immortalized, so don’t post anything that you would be embarrassed to have shouted from the rooftops about if it were about you.

As a small aside, this also somewhat applies to sharing of diagnoses in public. I’m particularly thinking of those shirts that proudly proclaim “my child is autistic.” I know that I certainly wouldn’t want everyone who walks by me on the street to know that I’m autistic, and I would be mortified if it were broadcast to everyone in the general vicinity via a shirt. Diagnoses are private pieces of information that not every stranger needs to know about, not the least of which because it opens the autistic person in question up to potential abuse.

I choose to share my own personal journey and experience as an autistic person. This doesn’t mean that everyone else has the right to share it for me without my permission. Autistic people deserve privacy and to give consent to their personal information being shared publicly. Please consider this before you post.

When I was little my grandpa would call me “Whirling Dervish.” It’s because I was always spinning around in circles: spinning in place in the yard, spinning while pacing, spinning in my seat, spinning through the air as I skipped. As time has gone on my age has changed and the nickname has lost its grasp, but the movements have not. My body almost always wants to be in motion. I need to pace, to jump, to spin, and to skip. Sometimes I’m literally all over the place. I’m really big on pacing, and I’m pacing just about all the time, including in public places like in stores and waiting rooms and such. I sometimes think about myself as having a “loud” body – loud with movement.

This can be very frustrating sometimes. Sometimes it’s hard to sit still for more than a few minutes, which keeps me from getting things done, including things I would enjoy like watching TV or reading or playing video games. Other times it’s easier, I can manage to stay more still and stay seated. I’ve learned to sort of just go with the ebbs and flows of how my body wants to move at any given moment instead of trying to force anything, which wouldn’t help and would just make me more anxious. It’s like when you’re snowboarding and you come up on a patch of moguls you can’t stiffen up and try to ride straight down the slope. That’s a great way to lose control and fall. Instead you have to loosen up and follow the path of least resistance.

When my body is cooperating and I’m not stuck in loops of movement, which fortunately is the case a good portion of the time, I try to take advantage of it. When that’s not the case, I just go with the flow and come back later, or alternatively seek accommodations when this is not possible. I distinctly remember having a high-movement-body-day (wow that’s a clunky phrase, but I don’t know what else to call it) when I was taking the ACT my senior year of high school. I would get up and move after every few questions or so, something I could do because I was in a room with only myself and the proctor, approved as an accommodation. Usually I’d answer a question and then impulsively get up, slowly spin around as I walked towards a wall, touch the wall, and come back and answer another question or two. The test proctor knew me well enough and was understanding enough that she got what was going on. And this strategy of going with the flow seems to have worked given that I had an astounding overall score of 34 and had a perfect score in two sections. If I were in a normal test taking situation in a room full of people I would have had to put an enormous amount of conscious mental energy to stay seated, which is energy I cannot then apply towards revising paragraphs, solving math problems, and interpreting science diagrams. Letting my body move when it needs to, letting myself stim when I need to, is important for my overall functioning, even if it can sometimes be frustrating.

Often times I have very little control over my impulsive movements. This is something that even I hadn’t totally grasped until recently because it’s not something that’s often talked about, presumably because most neurotypicals have little trouble simply telling their body to stay seated and still and so most people have a hard time imagining what it’s like for an autistic person or someone with ADHD or similar to have a body on the move. But when I get up to pace, when I spin as I walk, when I jump up in down when I’m listening to music, these movements are essentially automatic and reflexive. I have little control over these things much of the time. This doesn’t mean that I feel as though I’m under the influence of some invisible force which is causing me to move against my whim as if I were possessed, however. These movements simply happen in the same way that you reflexively flinch when you are startled, or how you reflexively pull your hand away from a hot stove, or how you reflexively scratch an itch without thinking about it. They’re natural movements for sure, but they’re ones that simply happen and I have to put a lot of effort into stopping them. Sometimes I don’t even notice my movements. I’m too lost in my own thoughts.

Whenever I’m on the subject of what autism actually is on a biological level, I always explain that autistic brains have trouble interpreting, processing, and integrating incoming sensory information. Every single facet of autism can ultimately reduced down to differences in sensory processing and integration. This means that autism, despite the way it is often framed, is not a behavior disorder or a social skills deficit. It’s a neurodevelopmental thing – there are physical differences in the ways that neurons in autistic brains connect to other neurons vs in non-autistic brains. This sensory aspect of autism is becoming more well-known, but what has often missed the spotlight is what should be one of the most obvious outcomes of differences in sensory processing: motor differences.

The brain works on many trillions of feedback loops in which sensory information is taken in and processed, and then this sensory information triggers a resulting motor pathway. It is no wonder then that a difference in sensory processing and integration would result in motor differences as well. Motor differences in autistic people have been known about for decades, usually in the form of clinically identifiable motor apraxia, which is something that I have by the way. In order to coordinate movements, your body relies on input it receives from multiple different sensory systems, and so if your brain has trouble integrating and processing sensory information then of course you’re going to have trouble coordinating your movements.

But I think that motor differences in autistic people go beyond just coordination. I think that motor differences also exist in areas such as motor planning, initiation of movements, and the ability to stop impulses and, generally, control your body. I think that it is very likely that executive functioning challenges (which are pretty much ubiquitous with autism) are if not entirely largely the result of motor challenges involving difficulties with ignoring impulses and the motor planning involved with starting a new task. This is just one example where motor differences can be used as an explanation for a common autistic trait that many people struggle with.

Especially over the last year or so, I have come to realize that a big thing that autism means for me is that in some ways I have a lot of trouble controlling my body, controlling, initiating, and delegating motor movements and impulses. Perhaps in many ways this is a good thing. With my brain in a constant sensory craze I am glad that I naturally re-regulate myself through my ever-moving body. But ultimately, it makes me more sure than ever that we absolutely have to move away from a behavior-centric view of autism and instead take a sensory-motor view. We have to work with the understanding that autistic people have trouble processing sensory and emotional input, and that as a result we may not be fully in control of our bodies and our movements.

I just realized that this post has almost the same message as my last post, only told in a different way. But that’s OK. This is something that I’ve been thinking about a lot lately. And I hope that something in here was useful or informative to you, as usual.

For more information on this topic, I highly recommend the following article at Neuroclastic: “Sensory Processing is Only Half the Story: Movement Differences in Autistic People”

That’s right! I’m finally writing a blog post again, after several months of silence!

To be fair, the headline is a bit misleading since I never actually went anywhere, I’ve just neglected to post anything here. I’ve been rather busy working on a few different things both personal and related to my advocacy work, not the least of which is finishing up the manuscript for my book.

If you don’t happen to be following me on any social media, the manuscript is now complete! Shake it Up! How to be young, autistic, and make a difference (provisional title, but looking like it will become the official title) is a first-of-its-kind advocacy guide written specifically for autistic teens and young adults who want to make a difference in their communities, also featuring interviews and case studies with eleven young autistic activists. The preliminary feedback I’ve gotten from the publisher is that this is going to be a fantastic book, so I’m so super excited to be able to get it out into the world here soon. I’m so glad I could finally write something directly for autistic young people like myself.

The delivery date was delayed by one month, but it’s finally in and we’re taking the project to the next steps. There’s still more work to do, including both fun things like cover design and marketing and more mundane things like copyediting and typesetting. I’m really looking forward to pushing forward with the fantastic people over at Jessica Kingsley Publishers! Last year when the book was commissioned I guesstimated a release date of the end of this year, and though this timeline is still hypothetically possible, I think that an early 2022 release is more probable. I will receive an official timeline from the publisher soon.

I worked really hard on this book, but now that the brunt of my work is complete I suppose it’s time to start writing here again. I have a few ideas for blog posts lined up, so stay tuned.

I’ve also been doing relatively decent in my personal life, just going with the crazy flow. I’m still enrolled as a student at Colorado State University, but I’m not taking classes this semester because I had a pretty sucky time last year due to COVID stuff, and since some of those restrictions are still in place I’m just going to wait it out until I can have a fulfilling in-person experience.

On some more upbeat notes, I had a fantastic fossil hunting season over the summer. I had so much fun last summer chasing down old dead animals and plants that I had to do it again, which culminated in a multi-week expedition across Colorado, Wyoming, and Montana, collecting on six different geological formations ranging in age from the Jurassic to the Oligocene. Didn’t find any T. rex skeletons or really anything of any real value either scientific or monetary, but I got to add a bunch of neat little finds to my mini-museum. I like being out in open ranch land looking for prehistoric treasures in the rock faces. It makes me feel connected to the earth and its history, plus the ranchers themselves are just about the friendliest people in the world.

I’ve also been occupying my time by being engrossed in the TV series Breaking Bad (unusual for me because I rarely watch TV), and I was so impressed with how well the Denver Broncos played in their opening week victory against the New York Giants that I’m excited about a professional sports team for the first time in many years.

But ultimately it’s time for me to get back into a flow of writing in here and making a difference in whatever small way I can. I know this wasn’t a “real” blog post in my usual style, but I promise that’s coming soon.

I’m back, baby. Throw the confetti and set of the fireworks (actually don’t do that last one, it’s a sensory disaster)!

I turned the piece of glazed ceramic around in my hands a few times, noting the mosaic of colors of the DIY adornment and its distinctive tennis-shoe-print texture. The roughly four centimeter diameter circular piece of painted hardened clay was attached to the end of a piece of string which had been threaded through a half dozen or so multi-colored plastic beads and then tied at the ends into a necklace.

What I was holding in my hand was a 1st grade art project, created well-over ten years ago. Our class had rolled clay into a ball and then stepped on it to flatten it. We poked a whole near the top of the clay disk and then painted and glazed it before the art teacher fired them in a kiln. A little bit of thread and decorative beads and voila, we had made necklaces. While I had made one at the time and I even still know where it is at home, the necklace and clay adornment I was holding was not made by me, but rather a friend who was in my first grade class. I was over visiting and noticed this particular elementary school art project hanging near his desk, which had brought a flood of memories of the time back into my head.

I turned to my friend and asked if he remembered making these in art class in 1st grade. He replied that he did not, and had very few memories from elementary school. This is reasonable, after all a lot of people have trouble recalling their childhoods. But what continues to haunt me to this day is the reasoning he gave next for why he thinks he can’t remember much of it: trauma.

My friend had experienced so much trauma, so much pain, and so many bad memories that his brain had pushed them so far out of his consciousness that he couldn’t recall them. Though honestly, I’m unfortunately not surprised. This friend is autistic as well, and I know first hand the sort of trauma that autistic students go through at school because I lived it too. In fact, I don’t think I’ve ever met an autistic person who went to in-person school and doesn’t have some sort of lingering trauma from the experience.

The fact is that our schools are failing their autistic students. Though some places are better than others, this isn’t a problem that’s restricted to just one country or region. It’s occurring the world over, and the worst part is that it almost seems like society is just sort of OK with this. Autistic students are being traumatized by their experience at school, and facing a higher rate of both dropping out and, even worse, suicide as a result. If this were occurring within the general population of students it would be called a crisis and immediate action would be taken, and yet with autistic students it’s almost looked at as if it’s just the expected norm, or at least there aren’t enough people saying or doing anything about it to suggest otherwise.

I was almost a victim of the school system, but I managed to escape thanks to the efforts of a small private high school. Unfortunately, many people are not as lucky and privileged as I was in this regard. But having gone through a lot of school trauma myself, in addition to the insights I’ve gained speaking with other autistic students, I think that there are many factors that are causing the trauma that autistic students are facing. However, if there is one thing that needs to change, one factor that I think is having the greatest negative impact on autistic students is rampant behaviorism.

The biggest blunder that educational systems across the world have made in regards to their autistic students is to treat autism as if it were a behavioral disorder. “Behavior” is one of the big autism buzz words in education; you’ll hear people talk about “managing behavior” and “challenging behaviors.” Autism is often times summed up as just a list of “behaviors.” Teachers post in forums about stopping this or that “behavior” from an autistic student. Autistic students are described as being “noncompliant,” and when an autistic student is having trouble with an activity they are sometimes said to be “refusing” to do X or Y or Z. When I was in elementary and middle school every autistic student had a “behavior plan,” and IEP plans for autistic students generally focus on extinguishing certain “behaviors,” with this being framed as providing “support” for the student in question. Some people consider the highest success an autistic person could reach is to become totally indistinguishable from a non-autistic person.

The problem with this line of thinking is that autism is not a behavioral disorder. Autism is a neurodevelopmental disability, it is characterized on a biological level by differences in how individual neurons connect to and interact with other neurons. To way oversimplify things, the autistic brain processes incoming information very differently than a non-autistic brain because our wiring is literally different. On a more practical level, for autistic people this results primarily in differences in sensory processing and motor apraxia. Almost everything that we associate autism can be reduced down to one of those two differences. Autism is not a jumble of disconnected “behaviors.” Autism also really isn’t a “social skills deficit” when you get down to the heart of it, even though we’ve been defining it that way for decades. It is the result of a physical difference in the way that neural connections develop in the brain. When an autistic person cannot do something it is not because we are choosing not to, it is because the neural pathways in our brain necessary to perform those actions simply do not exist. We don’t say that a blind person “refuses” to see or call a wheelchair user “noncompliant” when they can’t go up a flight of stairs, and yet for some reason this sort of language is commonplace when it comes to autism.

The way we should be supporting autistic students is through accommodation: changing the environment to make it more accessible for people whose neural inputs and outputs are different. We already do this for most disabilities. Accessible parking spaces, wheelchair ramps, braille signage, and sign language interpreters are all examples of how we have made our environments more accommodating for people with various disabilities. But the way that most schools currently handle “support” for autistic students would be as if they placed a person with a mobility disability into hundreds of hours of excruciatingly painful physical “therapy” so that the person might be able to slowly drag themselves across the ground unaided instead of simply allowing them to use a wheelchair.

Open AAC access, sensory supports, modified instruction, and just a little bit of respect, acceptance, and understanding for the different ways that we move, think, and feel can go a long way in supporting autistic students, and yet so often these supports are discouraged or even flat out denied. Or worse, used as bribes in a Pavlovian behavior modification scheme (“You can have your chewy necklace after you finish this worksheet.” “You can stand up from your desk in ten minutes if you stay focused the whole time.” “You can have your communication device back after you speak the word “apple” clearly and with the ‘correct’ tone of voice.”). If an autistic person is having specific troubles in an area, they can be addressed with speech therapy for communication needs, occupational therapy for executive functioning and related needs, and physical therapy for motor needs (and by the way if your “therapy” is causing stress and trauma then you’re doing it wrong). But of course, this is rarely the approach that schools take. Nope, usually what happens (especially in the United States) is that the student is stuck in Applied Behavior Analysis and put on some sort of “behavior plan,” despite the fact that autism is not a freaking behavioral disorder! Meet the need, stop focusing on the “behavior.” And might I add that if you actually work on supporting an autistic person in a way that works for them a lot of those “problem behaviors” will go away. “Challenging behaviors” in autistic students, such as meltdowns, are generally simply autistic responses to extreme stress and trauma. So stop traumatizing autistic students with your attempts at “support” through a behavior-focused view of autism. Not to mention the fact that I guarantee you that the student in question isn’t learning much when their brains are in a constant state of fight-or-flight and panic due to an inaccessible environment.

When I was in middle school many of the “supports” I received did absolutely nothing to help me. I had one on one “social skills” sessions where I was supposed to name the emotion on a cartoonish face and we sang songs about how it was important to have empathy. They told me that the reason nobody liked me was because I was a bad friend and that more people would be friends with me if I didn’t talk about insects too much. I was constantly told to stop “overreacting” and was locked in an isolation room in the office for hours on in when I would involuntarily do things like run out of the classroom when I was overwhelmed or was being “disruptive.” In first grade I had to sit out for most of our field trip to the Denver Botanical Gardens when I got distracted by something in the distance and ran towards it. In the fourth grade I was sent home from a field trip to the Rocky Mountain Arsenal Wildlife Refuge because I stood too close to someone while talking too loud by accident, which the teacher interpreted as me being “aggressive.” That same year both my teacher and the school counselors tried to prevent me from going on our next field trip to the Phoenix Mine on the off chance that I might “misbehave” but was luckily bailed out by another fourth grade teacher (and I did perfectly fine on that trip, by the way).

None of this was “supportive” in any way. All it did was cause me additional stress and trauma. I wanted so bad to be “good” but it felt like everyday I was spinning a slot machine and at any time I could land on a spot where I’d get in trouble for something I didn’t even know I did or for something my body did which I had no control over. What I really needed help with was the fact that I was drowning in emotional soup every day. I was in a constant state of angst because my sensory inputs were never regulated. I was never able to turn in homework because I simply forgot about it most of the time and I lost the planner the school provided us within the first few weeks. I couldn’t finish math tests or writing assignments on time because I had trouble getting the right grip on my pencil, then I was called lazy because my handwriting looked like a kindergarteners. I remember in elementary school never getting past the “add one” pop quizzes not because I didn’t know how to add 1 to another single digit number, but because I physically couldn’t write out all the numbers in sixty seconds.

I truly think that behaviorism is the biggest reason why schools are failing their autistic students. It stems from the fact that most people, even people supposedly educated on the subject, don’t actually know what autism is beyond a bunch of “behaviors.” There are self-described “autism experts” out there who don’t know what autism is.

The behavior-centric view of autism is a root cause for much of, if not most of, the inaccessibility that plagues schools around the world for autistic students. Ableism, seclusion, othering, and discrimination is often what results when schools try to address autistic students as if they were essentially just neurotypical students but with behavior challenges.

You know what would have made the biggest difference for me in school? If I were reached out to with empathy, compassion, and love in order to support my erratic brain and body and help me be the best me I could be. But instead, like most autistic students, I was looked at as a kid with a bunch of “behaviors” that needed to be extinguished or deficits to be “repaired.” And I suffered for it. It’s hard to be put through an emotional and sensory hell every day and expected to just “grin and bear it” while at the same time being expected to learn and remember dozens of mostly arbitrary classroom and social rules. It’s hard to go to school everyday with a seething underlying anxiety that you’ll get in trouble for something your body does without you thinking about it (or often having any control over it). It’s hard to face exclusion and harassment from fellow students and then be blamed for it.

The results are of course a high incidence of school-based trauma for most autistic students who are not lucky enough to have been homeschooled from a young age. This undoubtedly contributes to the significantly higher rate of suicide and unemployment that autistic young adults face. Something has to change. The way that autistic students are understood and supported in school environments has to undergo a major rethink. This cannot be ignored any longer.

Ultimately, what we need is a paradigm shift in the way that we understand autism. This is not something that just happens overnight. However, one person at a time everybody involved in education can start to make a difference in their own classroom or school. Here are some things that I’d like to see:

• Embrace the Neurodiversity paradigm. Stop seeing autistic and other neurodiverse students as being broken neurotypicals. Embrace differences in neurology within your classroom rather than expecting that neurodiverse students change themselves to appear neurotypical. Expecting autistic students to try to “mask” their autism and appear as “normal” as possible is widely accepted as being a contributing factor to low self-esteem and even suicide among young autistic people.
• Recognize that behavior is communication. Stop focusing on “how do I stop the behavior” and start asking yourself what is being communicated and what needs are not being met, if applicable.
• Recognize that generally “challenging behaviors” exhibited by autistic students are simply autistic responses to stress and trauma. If a student is having daily meltdowns this isn’t because they’re being naughty or making poor choices, it means their brain is literally in an emergency shutdown because it can’t handle the input it’s been receiving. This is a problem, and it is a sign that something in the environment or routine needs to be changed ASAP. This is just one example, but I assure you that if you focus on the need rather than on the behavior you will have much happier and less stressed autistic students and many of those “challenging behaviors” will go away on their own.
• Stop punishing autistic students for their neurology. Stop putting students who can’t sit still at their desk in time out. Stop excluding students from field trips because they might be “difficult.” Empathize and work one-on-one with students when they have emotional trouble, don’t throw them in isolation rooms. And please, if you do nothing else, stop calling the police on autistic students (yes, this really happens)!
• Drop the reward charts and behavior plans in favor of accommodation. A student has trouble holding a pencil? Let them type their assignments. A student can’t focus while sitting still? Let them pace in the back, or bounce on a ball at their desk. A student has trouble speaking? AAC to the rescue. A student is overwhelmed by the hallway, lunchroom or classroom? Sensory accommodations such as headphones, sunglasses, chewlery, and comfortable clothes can make a big difference.

Now obviously this is a much more complicated and nuanced problem than I could possibly sum up in a blog post, and the solutions in practice are far from straight forward or even easy. But hopefully I’ve gotten the discussion started. Schools are failing autistic students, and we need to do better. It’s time to start now.