Category: Uncategorized (Page 2 of 2)

My web host is as secure as a block of swiss cheese. I’m in the process of switching hosting but it is agonizingly time-, energy-, and money-intensive. In the meantime, I comb through my posts for the spam links and delete them. I change my password regularly. And I apologize to you.

For the record: I do not accept advertising on this site. I do not embed advertising on this site. If you see a spam link woven into one of my blog posts, I promise you I did not put it there and I will be removing it as soon as possible.

Predators are taking advantage of me and my blog. Please do not click the links that are obvious advertising and, for the love of all that’s important in this world, please do not buy something from one of those links (the redbubble t-shirt links are mine. Feel free to buy a sticker or t-shirt if you like them.)

Thank you.

This is a transcript of a YouTube video I published six years ago.

 Hello. This is my last video from where I’m at here in Maine because next week I start heading south again. It’s gorgeous here. I’m sure you can see what a beautiful day it is. Today I came out in the bright sunshine to talk about a dark topic suicide. I am a survivor of multiple suicide attempts, and before you worry, I’m fine right now, but I wanted to share that because I read an article this week by m Kelter of Invisible Strings.

I will have the link to that down below. And in that article, he mentions that two-thirds of autistic adults are suicidal. I’m just pausing for that to sink in two-thirds, and today I want to talk to that two-thirds.

The thrust of the article was that you should be very careful what language you use when talking about autism. Because we’re listening, we’re reading. I wanna be vulnerable today because a lot of people have told me they read my writing and they feel … they … they view me as so strong and powerful and proud.

And yes, I am all of those things, but I’m also very vulnerable and weak, and I struggle with depression and anxiety, and I want you to know you’re not alone. You’re not alone. It’s really, really hard to be an autistic person in this world. It’s hard to be anyone in this world today, but there are days when I am convinced that the world hates me and everyone like me, and it doesn’t take much convincing when there are people out there talking about stamping out autism and early detection.

So, you know, what does early detection mean? It means let’s, let’s detect the autistic people before they’re even born. Let’s make a world without … I’ve actually seen organizations in their mission statement say that they are fighting for a world without autism, and that’s horrific to me because a world without autism is a world without me.

There’s another article that I’m also gonna post down there in the comment box below this video. You’re not alone. It can get better. It does get better. Don’t leave us. We need you. We need you. How can we have a full understanding of autism without your voice? We need you. Don’t leave us.

So number one, you don’t over-commit.

Now, that’s a huge thing. You say, no, that’s hard. You make boundaries. You fight guilt and pressure and internalized shame. It’s okay to have boundaries. It’s good to have boundaries. Don’t feel guilty for saying no.

People will try to tell you, you should be doing more than you’re doing. ‘You’re not living up to your potential. You’re not doing enough.’ You’ll tell yourself that. You’ll think I only got one thing done. I got nothing done today. Nothing done today. I’m worthless. Believe me. I have those days. I have a lot of those days. The thing is, you’ve got to remind yourself that you’re working with a different processor, you’re working with a different neurology.

Number two, don’t be afraid to ask for help.

This is easier said than done. I have a really hard time if I ask for help. You know, I’m really in dire straits because I just don’t do that. I learned over the years that it was pointless. I wasn’t gonna get help anyway. I was just gonna get blamed for my problems. I was gonna get told to try harder. So I just gave up. Don’t give up. Learn how to ask for help.

Find someone you trust and ask them to help you learn how to ask for help. Just know you don’t have to do it alone. Whatever it is, life. You don’t have to do life. You are not alone. We’re here, ask for help.

Number three, find happiness within.

Don’t go chasing happiness thinking it’s just around the corner, just over that hill in that person, in that job. Find it inside yourself. And a really great tip the article gave was to make a happiness list. I think this is a marvelous idea. I’ve done it myself.

When you’re feeling good, write down everything that makes you happy. It doesn’t matter whether it’s something big like travel. Or something small like smelling a puppy’s tummy, which makes me really happy cuz they’re so fuzzy and they just smell so puppy.

You know? I mean, if it’s running your fingers through the water coming out of the faucet, put that on your list. That makes you happy. Put everything on your list that makes you happy. Star Trek is on my list. Let me tell you a few episodes and I might not be happy yet, but I’ve pulled out of the funk I was in because Star Trek really makes me happy a lot.

Music. A really great thing to do is make a playlist that starts with music that matches the mood you’re in and it goes through shades of mood and ends with music that makes you feel really happy.

Like, I know it’s cheesy, but R.E.M.’s “Shiny Happy People”, you know, it’s just the right beat. I’ll get up and dance. I’m really happy, but I can’t go straight into it. I have to work my way there: if I’m not feeling it, that song just pisses me off.

Don’t compare yourself to others. This is number four. Don’t compare yourself to others.

And, yeah, because especially don’t compare yourself to people who aren’t autistic because they’re not autistic. They’re not, I mean, they’re like you because we’re all human beings, but they’re not like, you don’t even compare yourself to other autistic people. You know, if I sit around and compare myself to John Elder Robeson, and Temple Grandin, and Leanne Holiday Wiley. I mean, really, I don’t mean to insult these people, I’m actually praising them. These are really successful people. And Lynn Soraya. really successful people who are autistic. And if I’m feeling bad and I start comparing myself to them, I’m gonna feel like crap.

Because Lynn Soraya writes in Psychology Today, and John Elder Robeson has his own business and Temple Grandin, she gets to hug cows every day for a living. I mean, come on. What a life, you know? And I need to only compare myself to myself. Like right now, I’m sitting on this amazing grass hill with these trees behind me, in Maine.

I’m in Maine. Maine is glorious, and it’s sunny today. It’s gorgeous, and I’m so grateful to be here. You know, when I compare my life to my life, it’s pretty great.

Make another list, an achievement list. I know you have achievements. I don’t care who you are. You have amazing achievements. Look back at yourself five years ago, 10 years ago. Look back at what you were like when you were four or five, and think about yourself. Now you have amazing achievements. You do. I promise you do. And don’t give up on your amazing achievement list until you’ve put amazing achievements on there.

You know, when I’m sitting there with my car broken and no money, and I’m trying to work up the gumption to ask someone for help or do some other kind of problem-solving, it helps to look at my amazing achievement list. Don’t compare yourself to others. Make your own list of amazing achievements.

Number five, don’t second guess your decisions.

You have an inner wisdom. You have an inner truth. You can make the right decisions. You might need to ask for help. You might need a mentor.

Trust that you can make decisions. Don’t let people convince you. That you aren’t competent to make your own decisions and your own choices in life, you may need support achieving what you’ve decided to achieve. But don’t second guess yourself. You have wisdom. Do yourself. Don’t let other people tell you who you are.

That’s that’s your choice, who you are. Don’t let other people tell you what you can and can’t do. You know what you can and can’t do? Don’t you know what you can do? You know what will crush you and what will uplift you. Don’t let other people tell you who you are and what you can do and what you can’t do.

Number six, don’t feel guilty about taking me time. I mean, seriously. Everybody needs time for themselves. Especially autistic people. My goodness, we need time to recharge our batteries. Even really outgoing, really people oriented, autistic people need time to recharge our batteries. You have to put your own oxygen mask on first.

You have to take care of your own needs first. You have to don’t feel guilty or ashamed or let other people pressure you not to take the time you need. To rest, to restore yourself, to get your wits back about you, to, to recollect your spoons and your energy. And you need that. Don’t let people take away your me time.

Um, if you have kids, it’s really hard to get me time. But carve some out. Find somebody who will watch your kids. Somebody you can trust to watch your kids while you have some time away. Everybody needs me Time. You need to have time for yourself, time to do your own thing, time to do nothing. I take time to just stare at the wall or a tree or the sky or whatever.

I take time to do absolutely nothing, and that’s, that’s very important. And everybody needs that. Everybody needs that.

Number seven, don’t beat yourself up when you make a mistake. And now this one is really important because a lot of times when I get really depressed it’s because I feel like I did something completely stupid and sometimes it was completely stupid. I’ll be honest with you, sometimes I really screw up. I just really screw up and then I beat myself up over it.

I just, I dwell on it. I. Can’t let it go. I chew on it. I chew on it and chew on it, and I need to, I’m processing it. My brain needs, I don’t process things as fast as other people. Sometimes things that people process in a minute or less, it takes me days or weeks or years. So don’t let people tell you that you obsess over things too much because y sometimes you just need to chew on things, but don’t let you get yourself in a funk.

By beating yourself up over something you did or said. You can’t take it back. You can’t undo it. But what you can do is frame how you chew on it. And I have these things I say to myself, I, I like when I’m really feeling bad and I’m saying, God, I’m so stupid, I start right there because I’ve learned that I can’t, you know, those, those, those, um, what do they call them?

Those statements of affirmation when I’m really feeling down a statement of affirmation, you know, I’m good enough, I’m smart enough, and gosh darn it, people like me. That’s just bullshit. Excuse my language. But when I am depressed, when I’m suicidally depressed, I can’t pull myself out of it by talking about how great I am because I don’t believe it.

So I start with where I am. I start with, God, that was stupid. That was stupid. Oh, I can’t believe I was so stupid. And from that I move into, I was stupid Sometimes everybody’s stupid, but I’m still a good person and, and every time I feel those bad feelings come up as I chew on what I did, I say, yeah, I’m stupid, but it’s okay.

I was still a good person. Yeah, I’m stupid, but I’m gonna get past this. It’s gonna be okay. Everything’s gonna be okay. It’s okay that I’m stupid. Everybody does that sometimes and, and see, that’s manageable. That’s a bite. You know, I’ve, I’ve bitten past that really deep self-loathing and I’ve entered a, a, a, a lighter period of self-loathing.

And from that, I, I moved to, Um, for, I moved from, I’m stupid to, I said something really stupid, but I’m not gonna do that again. Okay. Maybe I will do it again because I’m stupid. Nope. I’m not stupid. I’m not stupid. I made a mistake. Everybody makes mistakes. It’s gonna be okay. I made a mistake. Now I’m in this lighter level of self-loathing where I’m almost now of self-loathing.

Now it’s it. I’m not stupid anymore. I made a mistake. I made a mistake. It’s gonna be okay, and it may take me hours to get to this point, but it, it’s about framing. I. What you’re chewing on and, and taking bites that you can swallow. You know, if I start out with, oh, it’s okay cuz I’m a great person, is this, I can’t swallow that.

I need a bite. And I need to chew through it. And so I made a mistake, but I learned I can learn. I learned from my mistakes. I’m learning from my mistakes. God, this sucks. It sucks to learn from my mistakes. I wish I didn’t make mistakes. Everybody makes mistakes. It’s gonna be okay. I’m a good person. Good people make mistakes.

I’m learning from my mistake because I’m a good person. If I weren’t a good person, this wouldn’t upset me so much. I’m upset because I care. I’m a caring person. I care about whether I hurt other people. I care about what other people think about me. I’m a good person because I care about people liking me, being good to people, and having people be good to me.

I’m human. It’s okay to be human. Humans make mistakes. Humans say things that are wrong.

People can forgive me. I can forgive myself. I forgive myself for being human. It’s good to be human. It’s real. To be human. Being human gives me compassion for other people. Having compassion for other people is how I help others.

When I make mistakes, I learn and I can help other people. I can understand other people, I can forgive them and empathize with them, and that’s what I’m trying to do today. You’re human. You make mistakes. You’re different. People won’t always understand you. It’s a cruel world. People say and do harsh things.

It can be hard even just to keep yourself fed. It can be hard to find a space in life where people aren’t taking advantage of you. It’s hard. I know. I live it too. I’m there with you. You’re not alone. We can be human together. It’s a good thing. I love you.

Love yourself.

If you enjoyed this, I don’t know why. I’m cutting that. If you enjoyed this video, click the subscribe button below. Follow me. I try to make videos every week. Try to be here for you. Open, vulnerable, sharing my life as I travel, and make mistakes and be human. Have a great day because you’re a great person.

This week I ended up in yet another conversation with someone who wanted to defend ABA. He repeatedly asked us not to demonize ABA and kept dismissing discussions of the origins of ABA by saying that Lovaas is a long time ago and we can’t compare ABA to where it came from. Along the way, he used a racist analogy that I won’t repeat here.

He kept insisting that there are abusive ABA practitioners and good ABA practitioners so we shouldn’t vilify the entire body of ABA based on those bad apples. After several rounds of that, I wrote this and decided to polish it and share it here in my blog as well. Thanks for reading!

My problem is bigger than ABA. I have a strong issue with the entire field of behaviorism from which it springs. (I know, I know. You have some analogy about how I shouldn’t judge roses unfairly because they grew from manure. Now we can skip past all these analogies. You’ve been heard there.)

Before behaviorism, psychology was concerned with mind. Psyche. It’s hard to translate from the Greek, but you usually get soul, mind, or spirit. The whole field of psychology was concerned with interiority.

Along came Skinner with his boxes and his pigeons and his scientific revolution. You can’t question a pigeon about her interior existence or enact the talking cure on her. All you can observe is her behavior. And so behaviorism was born, by studying animals and later transferring the methodology to humans.

Skinner didn’t originally want behaviorism to be applied to humans. Read Steve Silberman’s excellent history in the book Neurotribes for more details about Skinner’s concern and eventual yielding to those who wanted the theories of behaviorism to enter the field of human psychology.

This is why so much ABA looks like animal training: that’s where it came from. Watch anyone training a bear to do tricks and you will recognize the methods. (Any readers who have been traumatized by therapies should not watch videos of bear training. It gave me nightmares for weeks.)

ABA has a fundamental flaw because Behaviorism has a fundamental flaw. It’s a psychology cul-de-sac that people cling on to because they don’t know how to access the interiority of those who do not speak so they don’t know how to do any psychology other than animal training when faced with non-speaking clients.

And since Behaviorism rapidly became the gold standard for addressing autism, the toxic viewpoint and theories blanket nearly all autism projects, programs, theories, therapies, and classes. Most insurance will only pay for something named ABA, so everyone jumps into that name because it’s the only game in town. And the organizations certifying people as officially qualified to perform ABA are perpetuating everything that’s wrong with Behaviorism while veiling it in soothing words – often, ironically, Behaviorists use wording lifted from the Neurodiversity Movement but stripped of their intended meaning and context. It’s insidious and it’s awful.

And some good people slip through. Some people give lip service to behaviorism, knowing in their heart it’s the wrong approach, get their certification, and then get out into the world and practice with genuine compassion and help people.

And a lot of those people don’t have the resources to set up their own practice, so they go to work for someone else and are forced to do things they feel very wrong about if they want to keep that job. Those who don’t have the resources to quit and go work someplace else end up with PTSD over time because of what they are economically forced to perpetrate. I feel for them. I’ve met some after they quit and recovered somewhat. It’s a very real trauma they’ve experienced – the trauma of causing trauma in others. It’s a hard thing to deal with.

I never did make that flaw in Behaviorism clear, did I? That flaw is the Black Box. Behaviorism is external. Behavior. What you observe.

You say ABA cares about internal things? Motives? Preferences? Aversions?

True, but it’s designed to be able to glean all that from observing behavior, not from social-emotional bonding between client and professional.

You can talk all day long about practitioners who do care about their clients, who do bond with them socially and emotionally, who do care about interiority, etc. You and I both know that they exist. I have met some BCBAs that I really liked, who were genuinely good people.

But … in order to present ABA as something beneficial for ALL Autistics, it has to be something that can be done with non-speaking Autistics and show documentable results.

That’s the number one argument I hear from those who support ABA: “it works. It’s documented.”

I’m not denying that. ABA works for all the same reasons that bear training works. My argument against Behaviorism is that I don’t want my people viewed as or treated like animals. We are human beings. It harms us to be viewed as or treated like animals and that is what Behaviorism encourages from its practitioners.

Behaviorism, at its core, only cares about the exterior reality of a person. And until professionals start learning how to access interiority with non-speaking Autistics (it can be done. I know parents who do it every day with their non-speaking children) Behaviorism and ABA will always be the order of the day because ABA is easy and documentable and no therapist ever has to return 15 to 20 years later to clean up the mess when the trauma they started finally comes to full fruit.

Every oppressive system has many, many good people in it. People get caught into systems in so many different ways. I will never deny that there are good people out there practicing ABA. But there are far more people out there damaging children because they are working from within a system that, by design, damages people. In the end, the good ABA therapists don’t matter. I mean, they matter as human beings and I feel for the struggles they will face if we manage to get rid of ABA and they have to re-certify in something else.

But it doesn’t matter that there are good people doing good work in ABA. The system is so flawed and so damaging those few good apples aren’t worth taking on the whole rotten barrel.

A friend showed me an article today: Study: Drivers With Autism Just As Good As Other Motorists. My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)

A 2018 study found that “Drivers With Autism Just As Good As Other Motorists”. A friend pointed out that if you’re driving with autism, autism is your co-pilot. Now, most Autistics I know don’t drive, but if you’re one that does drive celebrate by putting this sticker on your vehicle, letting the world know that, hey! you’ve got this driving thing down. After all, you’re with autism!

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After getting their permission to “steal” that brilliant idea, more ideas kept coming. There are so many ways to be with autism, after all.

You’ll need someplace to store and carry that autism you’re with:

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Autistic people can go about our lives without a care, but the moment someone insists we are really a “person with autism” we have to figure out where to put our autism so we don’t accidentally leave it behind at home. Enter the autism bag. A clear label warns others to stay away from your autism while sturdy straps allow you to carry your autism along everywhere you go. The stylish accessory every person (with autism) needs.

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But I hadn’t quite captured the full zeitgeist of person-first language. There needed to be a t-shirt that acknowledged the autism accompanying a person. And here it is:

Are you an Autistic who keeps getting called a person with autism? (Is being with autism like being with child?) Tell the world that you are here with autism. Autism is evidently right next to you. “What, you can’t see it? How can that be possible? I am clearly a person. With autism.”

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In case it’s not clear, all these designs are satire, meant to snark a little bit at person-first language with its assumption that autism can be sifted out of a person and set off to the side as something incidental that “just happens” to exist but “doesn’t define” the person who is carrying it around like a pet or an accessory.

The following is a guest post from Noah King, a review of the film Spectrum. Enjoy!

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Spectrum: A Story of Mind
a review by Noah King

Spectrum is beautiful. Never before have I seen such a story that can simultaneously educate and emulate autism as a subject so well. It’s everything I could have asked for, as someone diagnosed on the autism spectrum myself.

To think that a video like this could be constructed, and shown all over the country, is astonishing to me. As recently as a few decades ago, autism as a subject was still very much misunderstood and isolated – defined as an explicitly incorrect way of living life. To see the strides we’ve made as a population in such a relatively short amount of time is uplifting, enthralling. In a way, this video is a culmination of the suffering endured by those under autism’s great umbrella of coverage and influence – individuals such as Temple Grandin, featured in Spectrum, who grew up in such a whirlwind of sensory issues and miscommunications, what have since sufficiently climbed the ladder of society, the hard way. It’s these individuals that have spurred forth the research and development of treating and working with autism, as well as several other mental conditions, including ADHD and ADD. Spectrum is, in essence, our story, and our answer to the question, “What do you mean, you don’t think that way?”

And this is where Spectrum is given its true strength – empathy and understanding. I have to give congratulations to the amazing editors, musicians, artists, sound designers, and other technical staff who worked on this film, for how they’ve helped to demonstrate autism to neurotypical persons. Autism is a sensory kerfuffle, a nebulous and omnipresent shifting of sights, sounds, smells, tastes, and feelings. And so too is Spectrum – we have bizarre animations, startling imagery, heightened and disturbing sounds, bizarre movement, the list goes on and on. All of this, featured between footage of persons with autism – the type of people usually dismissed from an off appearance, or a noticeable difference in intelligence or social skills. These are the experiences these people endure for most of their lives.

Most important is a breaking of stereotype – the people shown all exhibit widely different forms and variations of autism. We have developing children, and we have adults holding successful jobs. We see communication disorders, lack of eye contact, a severe response to stimuli, inability to speak, and, most importantly, we have people who have broken the mold – people like the martial artist featured in Spectrum, who have utilized their autism in their career. We have the potential to become so comfortable in our own skin, the line between the neurotypical mind and the divergent mind will blur. This is what Spectrum concludes on – having journeyed from developing children to adults of various dispositions, various careers. The effect is all at once demonstrative of autism, as well as demonstrative of how much we’ve come to learn about it.

This movie was phenomenal. It’s an excellent primer concerning autism and autistic people for those unfamiliar with it. I’m happy to see it – the movie is proof of how far research on the Spectrum has advanced over the years. If it were up to me, Spectrum ought to be shown in all classes dealing with mental disabilities or development.

This is a re-post of an essay that originally appeared on Unstrange Mind November 10, 2015.

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I have many heroes, living and dead. These are people who are role models to me, people who have changed my life for the better and motivate me to work to change others’ lives for the better in return. Paul K. Longmore is one of those people who has paved the way for me to have a fuller and more fulfilling life. Longmore worked to make the world a better place for disabled people and his work has had a direct influence on my life. One reason I work so hard to make the world better for other disabled people is so that I can pay forward the great debt I owe Paul K. Longmore.

I learned about Longmore’s work shortly after I self-published my first book, No You Don’t: Essays from an Unstrange Mind. I had worked hard to write my collection of memoir-flavored essays about my lived experience of autism and my hopes for the children currently growing up Autistic. Not only did I write, revise, and edit all the writing, but I laid out the typesetting for the print version, designed the cover, and created the Kindle version. I spent many hours in front of a computer tweaking images by a pixel here or a pixel there and shuffling words around to prevent awkward widows and orphans (isolated bits of words at the top or bottom of a page, disrupting the visual flow of pages.)

The book released very successfully, considering what a small fish I am, and I dutifully reported my income from it. Social Security rules for earnings while living on SSI are designed to help disabled people transition from living on benefits to being self-supporting. A small initial amount is exempt and then SSI is reduced fifty cents for every dollar earned. So I expected my checks to be reduced by a small amount, but imagine my shock when my checks were slashed so dramatically that I couldn’t pay my rent anymore. (I had already spent the royalties I’d received in that first burst of sales on life necessities, assuming that I would still get nearly a full SSI check later.)

When I contacted the Social Security Administration (SSA) about the problem, it turned out that they were considering my income under the rules for “unearned income.” These rules are more draconian: one’s check is reduced dollar-for-dollar. This is why I never bothered to go get utility assistance: if an agency gives me money to pay my winter heating bill, that money is unearned income and my SSI check would be reduced by the exact dollar amount two months later. So all utility assistance does for a person on SSI is shuffle their expenses but it doesn’t actually help them in any way.

It took me months to straighten out my money situation with Social Security and I am grateful that my landlord worked with me during that time because otherwise, I might have become homeless in the middle of the battle. The SSA was applying the rules for royalties that come from things like mineral rights. If you are on SSI and strike oil on your property and sell that oil to a corporation, the money you are paid is called royalties and it is considered unearned income. I have no problem with that because selling mineral rights on one’s property doesn’t require a lot of effort on the seller’s part and the oil that is pulled out of their land is worked by someone else. That income pretty much is unearned.

But the royalties that come from a creative work of art are different. As I said, I worked hard for a long time to put that book together and I continue to work all the time to market that book. I continue to work, writing more essays and books and promoting them in various ways. The royalties I earn from my book are, indeed, earned. I haven’t yet earned enough royalties to compensate at minimum wage for the hours I put into creating the book. My task was to prove to the SSA that I had earned that money and deserved to have my income considered under the earned rules instead of the unearned rules. And when I set out to do the research to prove my case, that’s when I discovered Paul K. Longmore.

Longmore was a history professor and a disability activist. In 1953, at the age of seven, Longmore developed polio and lost the use of his hands as a result. He needed expensive medical care for the rest of his life, due to post-polio syndrome, and so keeping the medical benefits that come with Social Security disability was very important to his survival.

Longmore wrote an award-winning book, The Invention of George Washington, by holding a pen in his mouth and using it to type on a keyboard. It took Longmore ten years to write his book. I do not tell you of his writing process and the length of time it took him to write as some sort of inspiration porn. I tell you because it underlines how much the royalties from his book were earned income, not unearned in any sense of the word. Longmore worked hard on his book and it is a highly regarded book in its own right.

But the SSA did not share this view and Longmore was suffering as a result. The fact that they took away every penny he earned was bad enough, but he could not accept awards for his book if they included a cash prize and his healthcare coverage was at risk. Longmore burned a copy of his book on the steps of the SSA main headquarters in Washington, D.C., an act of protest that he wrote about in an essay included in his collection, Why I Burned My Book and Other Essays on Disability.

Longmore’s protest and subsequent lobbying lead to a change in the late Eighties to the SSA rules governing earnings from creative works, colloquially known as the Longmore Amendment.

This is just the beginning when it comes to learning about Dr. Longmore’s contributions to disability activism and I highly recommend reading his books and learning more about his life. Sadly, Longmore died unexpectedly in 2010 at age 64, but his legacy lives on. He is one of my heroes and I think he will become one of yours as well. Thank you, Dr. Longmore, for fighting for our rights.

When I took my information to the SSA — information about the change in rules and direct citations from the SSA’s own rulebook — my meeting was almost anti-climactic. My caseworker barely looked at my evidence and changed my earning status with no fight at all, treating me as if I were engaging in overkill by bringing in documentation (despite the way I had been treated earlier without documentation, even to the point of being lectured that SSI is “need-based” as if I shouldn’t even want to have a higher income let alone have a right to work for a higher income and a chance to transition off benefits, becoming self-supporting.)

My reception was irritating, but I got over it pretty quickly when I saw the results: I don’t have to report my income month-by-month. Every year, I submit my tax returns and estimate my next year’s earnings. My check is adjusted annually, based on projected earnings. I am free to focus on working hard to build my business of writing, speaking, and trying to help shape a future world that has a place for people like me.

I owe much of my continuing success to the work of Paul K. Longmore. I hope my work pays tribute to his memory. He is one of my heroes and role-models. Thank you, Dr. Longmore, for fighting for all of us disabled folk who are trying to build careers and touch the future through our work.

Many of you have heard of Darius McCollum. He is the fifty-year-old Black Autistic man in New York City who has been jailed over 30 times for driving trains and buses illegally. He drives them safely and probably has more skill and knowledge than any official MTA employee, but because of ever compounding life circumstances, innocent driving that was secretly supported by MTA employees has escalated to a life of repeated criminal charges and years in prison.  At one point McCollum tried working in a transportation museum where he was very happy and his knowledge served the community well. When the museum director realized who he was, however, he was fired from that job as well.

McCollum’s lawyer is asking for letters and donations to try to save Darius McCollum’s life. McCollum is facing a judge who will decide whether he can finally get treatment for his impulsive nature — treatment he has never been able to get ever before in his life — or whether he will be locked forever in a prison for the criminally insane. That prison might as well be an execution because it would mean the end of the line for Darius McCollum’s chance at having a happy or fulfilled life.

If you would like to donate to his legal defense or write a letter to the judge pleading for treatment rather than imprisonment, visit the #FreeDariusNow website:

Free Darius Now

Below is the letter I wrote to the judge. Do not copy my letter. The judge will notice duplicate letters and, as a result, take our words much less seriously — if considering them at all. Write your own words and your own thoughts if you choose to send a letter. I am including my letter to help others understand the intense importance of McCollum’s case and to inspire others to write letters as well. The more sincere and carefully thought through letters the judge gets, the more chance we have to weigh in on Darius McCollum’s fate.

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Your Honor,

I am an Autistic adult, a writer and public speaker, and an advocate for Autistic people. I am writing to plead Darius McCollum’s case with you. It is my firm belief that Mr. McCollum does not belong in prison or in a facility for the criminally insane but rather in treatment that permits him to be part of society.

Mr. McCollum loves the transportation industry. He was fortunate enough to learn his passion at an early age and blessed to find acceptance and community for a time among the MTA workers who embraced and respected him. He proved himself motivated and responsible by sweeping trains and helping MTA workers with mundane tasks. Mr. McCollum is no irresponsible joyrider but a disciplined man who, through being misinterpreted and misunderstood, has missed his calling: a lifetime of service to the people of New York as a transportation professional.

The biggest criminal action in Mr. McCollum’s case is how life circumstances and the prejudices of those around him prevented him from following that calling. How many people sincerely wish they knew where they belong in this world? Mr. McCollum has known nearly all his life where he should be — serving the city of New York as a transportation professional. But his ambitions and dreams were thwarted every step of the way until we have come to this crisis point where the judicial system — where you, Your Honor — decides if the balance of Mr. McCollum’s life should be discarded forever to a grim punishment or rehabilitated.

In his 2018 book, Lost Connections: Uncovering the Real Causes of Depression and the Unexpected Solutions, author Johann Hari tells a story about a rice farmer in Cambodia who lost a leg when he accidentally stepped on an old land mine left over from war. The farmer was fitted with a prosthetic leg but fell into a deep depression. His neighbors recognized that the farmer was in pain, was struggling to continue his physically strenuous work, and lived in fear of stepping on another mine. The neighbors pooled their resources and bought the rice farmer a cow so he could become a dairy farmer instead. His depression lifted as a result.

The story of the cow highlights the importance of community in treating mental illness. Mr. McCollum does not belong in a prison for the criminally insane. He belongs in treatment and he needs his community to step up and “buy him a cow.” Mr. McCollum’s distress and mental illness is situational: it is caused by his community rejecting him and then repeatedly punishing him for following his dreams and pursuing the one career he found he could excel in. Even when he helped authorities make the subways secure after the tragic acts of terrorism on September 11th, 2001, he was punished for sharing his extensive knowledge and working to make New York safer.

All his life it has been Mr. McCollum’s dream to serve the people of New York and he has demonstrated his loyalty and devotion again and again only to be slapped down and punished again and again. Who among us would still be alive after decades of such a life? Mr. McCollum is a strong man and instead of punishing him I feel he should be helped in the hopes of ultimately permitting him to serve the people of New York or some other metropolitan area. With therapy to help Mr. McCollum address his impulsive nature and social services to help him adjust to life in the community after spending so many years behind bars, perhaps Mr. McCollum could graduate to working as a transportation professional — if not in New York City, in some other major city. If not as a driver, perhaps in a related capacity such as museum worker or service technician. His transportation skills and his deep passion for the machines of transportation and for serving the community are Mr. McCollum’s “cow.” Can’t we do everything in our power to build Mr. McCollum up rather than close the final jail door on his life?

Thank you for your time and consideration.

Maxfield Sparrow

This is an edited re-posting of a blog post that originally appeared on June 9, 2014.

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The saying goes, “if you’ve met one Autistic person, you’ve met one Autistic person.” That was really hammered home for me today as I watched a short video in which an Autistic man explains why Autistic people flap our hands . . . . and pretty much nothing he said matched up with my own experience. A few of the things he said even bothered me.

My intention is not to erase what he said, however. His view of why he used to flap his hands is just as valid as my view of why I still flap my hands. There are many ways of being Autistic.

(Since the video was not captioned, I took the time to make a transcript of it for those who can’t hear or understand it. That was fortunate as the original video was removed from YouTube.)

The video explains, “It comes down to repetition. When we, as people with Asperger’s, are in a really unknown situation or we’re in a situation where there’s a lot of anxiety […], there’s a lot of stress, the way that we manage that, is because generally it’s overwhelming we do repetitive motions, because then we at least know, hey, if I do this I have complete control over it. And I know that whatever I do, I have complete control and it’s going to happen the same time every time. Therefore, I get a little bit of comfort from it.”

This does not even begin to describe why I flap my hands or make other “Autistic movements.” If I were to do that, I think it would be fair to say that we would be here for a while. This is something that I just do and is what I always have done.

All of these have been known to help people relax and calm down when they are experiencing emotions that are out of the ordinary, something that I have to deal with frequently, which is where you will start to see the hand movements. So, yes, I flap in stress. I flap in overwhelm. I flap when I get hurt. The video presents hand flapping as if it only occurs as a result of stress or anxiety, however, and that is not at all true for me.

I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.

There are plenty of things I do to try to increase the amount of control in my life, but flapping my hands is not really one of those things. I don’t flap my hands to have something reliable and constant in my life. I fill that need with other things, like small stuffed animals I carry in my pocket or ritual ways of doing certain things. For example, there is a little ritual to how my boyfriend and I say good night in the evening and that ritual comforts me, gives me a sense of stability and predictability in my life, and helps me to make the transition from visiting with him to being alone again. I do other things like always removing the ice cube trays from the freezer in the same order, always putting the same number of ice cubes in my glass, always walking or bicycling the same route to get places, always brushing my teeth for the same number of minutes every night, and so on.

These things serve my need to have a predictable, orderly world that is under my control as much as possible. The more I am able to feel a sense of control over my life, the calmer and happier I am. I suspect this is true for most or all people, but it is quite extreme in my case. Something small, like not getting my usual seat, or having the water turned off for twenty minutes in my apartment building in the middle of the day with no warning, can make me feel like my world is coming to an end. I am always fighting back the forces of chaos. But I do not wage this war with hand flaps.

The most common reason for me to flap my hands is that I am very happy and excited about something. My boyfriend told me that he loves to see my hands flap because there is a lovely joy that goes along with it that is fresh and appealing, without guile or artifice. If I recall correctly, he used the word “childlike” and meant it in a beautifully loving and respectful sense. Over the month of December, we went through a Jacquie Lawson advent calendar together every morning right after having breakfast together and he got to see lots of hand-flapping on the days when the calendar surprise was a steam locomotive or a peacock spreading his bright tail feathers or a mansion kitchen staffed entirely by giant teddy bears.

I’d see these things that made me really happy and excited and there would go the hands. By the time I was aware that I was flapping my hands, they’d already been going wild all on their own without my awareness. My hand flapping is so often an expression of sheer, unadulterated joy — pretty much the exact opposite of what is being taught in the video. Asperger Experts says, “it’s basically a giant signal saying, “hey! I’m not comfortable right now. Things are too much pressure or too much, just, overwhelm of sensation to the point that I need to do something to feel better about it.”

Yes, I can feel pretty overwhelmed by joy! But the kind of flapping I do when I’m not comfortable and suffering is another kind of hand flap. It’s a whole language of flaps and twists and shifts and strokes and claps. My hands speak my emotions so clearly, but only to those who are willing to learn what they are saying. My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.

As an alexithymic, I’m not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I’m experiencing. I am “blind” to my emotions — I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues. My hands are always telling me what I am feeling. Without my hand flaps, I would not be anywhere near as connected to my inner life. Without my hand flaps, I would struggle so much more every day, just trying to understand what my body and spirit were experiencing. My hands are my teachers and they educate me about my deepest self every day.

While I feel as if my three-dimensional experience of hand flapping is described in a very one-dimensional way in the video, that’s not what really bothered me about the message. I was bothered by the way hand flapping was presented as something bad, undesirable, ridiculous looking, and mainly restricted only to small children. The video admitted that hand flapping is necessary, but presented it as something annoying and embarrassing that should be substituted as quickly as possible with something less visible, like repetitive thoughts.

“You shouldn’t just try to stop it because then they’re just going to find some other way of gaining comfort. […] All of a sudden, they might gain a tic, like [clicks tongue several times] and then that’s just even more annoying.”

No.

You shouldn’t try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? Or tucking your hair behind your ear? Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

(And when I say “we” and “us,” I mean those of us who do flap our hands or otherwise naturally move in different ways from the rest of society. Not all Autists move in the same ways and that includes the fact that not all of us rock or flap or spin (although the vast majority of us do) so don’t assume someone is not Autistic because you don’t see them moving in different ways. Or they speak. Or hold a job. As I always say, there is no one way of being Autistic.)

This video presents hand flapping as a necessary evil — something that is annoying but has to be tolerated because we do it to soothe anxiety and might end up doing something even more annoying if we’re forced to stop. In my opinion, hand flapping is a fundamental manifestation of the native nervous system of those who flap. It is how we are built, it is what we do. The focus should not be on whether it “might look ridiculous” or whether it’s better to “[transition] into listening to the same song over and over again, [or] say the same thing in [one’s] mind over and over again.” the focus should be on building a society that understands that we don’t all move our bodies the same way and that’s okay.

“You know, you don’t see many people that are forty doing this [waves hands].” I am fifty and I flap my hands. Many of my friends who flap their hands are older than me. I know people in their twenties, thirties, forties, and fifties who flap their hands and even someone in his seventies who flaps his hands. It’s okay to move differently from others. It’s okay to have a different neurology and it’s okay to be who you are.

There is a much worse risk that comes from trying to suppress hand flapping than developing an “annoying tic.”

When I was a child, I felt like there was no place that was safe, no place where it was okay to be who I am, no place where I could just relax and be myself. Everybody was trying to give me the advice of “just relax and be yourself,” but when I would actually do that, I would be yelled at, criticized, punished, bullied. I lived in fear and anger because nothing I did, no matter what, was ever right or good enough. At school, I was bullied by the students and even by many of the teachers.

At home, I was blamed for the bullying and told I was bringing it on myself. In a misguided attempt to shape me into someone who would not deserve to be bullied so much, all my mannerisms and stims and quirks were under attack. I felt like I was constantly picked apart for behaviors like walking on tiptoe, clearing my throat, flicking my fingers, spinning around, talking too loudly, grunting instead of talking, and so on. I spent . . . wasted . . . so much energy and focus on trying to make my body and face and voice do all the proper things. But no matter how hard I tried, I kept always doing something wrong and getting called out for it.

As a result, I was filled with so much anger toward everyone around me and so much self-loathing. I felt like nothing I did was ever right and I had no place to relax – school was filled with bullies and home was filled with picking apart my stims. I grew to hate everyone and often would lose myself in bitter daydreams with imagery I don’t care to re-visit now. My whole life was torment and I was in agony. This is the reason to let Autistic people be, not the fear that they might develop new behaviors that are even more annoying to the people around them.

The video’s reason for tolerating hand flapping was all about what makes other people feel okay or uncomfortable and had almost nothing to do with what the Autistic person wants and needs. Hand flapping almost had to be defined in that very one-dimensional manner, because if hand flapping is nothing but a comfort for excruciating anxiety, it is easier to decide to tolerate the “annoying” and “ridiculous” behavior, but if hand flapping is something that can be a sign of happiness as well as of more difficult emotions it’s harder to justify allowing people to be “annoying” just because they are happy.

But the problem is not with the hand flapping. The problem comes when the decision has been made that hand flapping is annoying or weird and not natural and adorable (which happens to be how it appears to me. I love to see people hand flapping! It makes me happy to see someone making a happy hand flap.)

The makers of the video may be Asperger’s Experts, but they are most surely not Maxfield Experts, because I’m not at all like what was portrayed in that video and I have many Autistic friends who are similar to me. Of course some Autistic people must resemble the portrait that was painted by the educational video purporting to explain hand flapping because that is how those two young men experienced their own Autistic movements. I don’t want to erase their voice when raising mine. But I also want to make sure their message is not the only one available to people.

So, as I said, the lesson here is that if you’ve met one Autistic person, you’ve met one Autistic person. There is not just one way to be Autistic. I’m sure the makers of the hand flapping video were expressing the truth about what being Autistic is like for them. Just be careful to remember that no one (including me!) speaks for all Autists. It is a pretty safe bet that there are also Autists out there who aren’t like the description in the video but aren’t like me, either.

So when you see someone flapping their hands, don’t make assumptions about what it means. There are some meanings that are more likely and some that are less likely, but better than guessing — better even than statistically-backed guessing — is getting to know the individual Autist and learning what hand flapping means for them. Engaging with humans is almost never a one-size-fits-all scenario. We Autists are individuals — it’s good to learn general autism data, but “at the end of the day” there is no substitute for learning the language, including the body language, of the special person in your life. Or of yourself, if that’s how it’s all playing out for you.

But no matter what the flaps mean where you are, I do hope you will take one thing seriously that I said: don’t hate on the flaps, don’t be afraid of them, don’t judge them so harshly. Learn to live with the hand flaps because they are a good and useful thing for Autists, no matter what purpose they serve for each individual Autistic person. And, who knows: if you don’t already, there may come a day when you begin to see the beauty in hand flaps. Hand flapping and other Autistic stims are quite exuberant and lovely if you remember that they are a person’s heart and spirit made visible in time and space for all to behold.

This is a re-post of an essay that originally appeared on my old blog on September 3, 2015. It is reproduced here without edits or changes from the original form.

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We were discussing early diagnosis/identification and early intervention/therapy over on the Facebook forum for this blog and a reader, Megen Porter, made a deeply insightful comment: “It’s almost like early identification is important so you can intervene on yourself as a parent.”

What a brilliant way to put it, Megen! Thank you!

The standard meaning of the phrase early intervention is to jump in with hours and hours of therapy to try to get an Autistic child to be “indistinguishable from peers” as quickly and as thoroughly as possible. This means extinguishing Autistic behaviors, even absolutely harmless ones that are beneficial to the Autistic person but embarrassing or off-putting to onlookers, the classic example of which is hand flapping.

But Megen put a lovely spin on things by pointing out that it is the parents who need the early intervention. When autism can be recognized and identified early, the parents have a golden opportunity to begin working to understand the child they actually have. They can now learn about autistic neurology and stop interpreting their child through the wrong lens. Their child will be happier, healthier, and feel more love and acceptance for who they truly are once their parents’ fear and confusion has cleared away. Parents can avoid shaming their child for being different and can come to understand that their job is not to try to shape their child like a lump of wet clay but to celebrate who their child is and work from there.

Of course there will be some kinds of specialized education. All children get education at home and at school, and identifying children who are neurodivergent in various ways means that those children can get more targeted education that works with their brain, not against it. Autistic children might need extra mentoring in coping with processing sensory input. All children need to learn how to self-soothe — none are born knowing that. Autistic children often need extra mentoring in that area. Later, it might be extra important that an Autistic child gets academic directions in a written form in addition to or instead of a spoken form. Or an Autistic child might need help with finding a method of communication that works well for that child since speaking isn’t always the optimal choice. These kinds of interventions are very important.

But the most important early intervention — and the earlier the better! — is for the parents. Let’s all work to help parents of newly-identified Autistic children with their early intervention program. What can you do to help?

When someone tells you that their child was just diagnosed, don’t say “I’m sorry.” Say, “that’s great! Now you know what is going on. I’m so glad you have that information.” If you’re a hugger and they’re a hug-liking person, add a hug in there. Be friendly, encouraging, upbeat. If they are telling you this because your child is Autistic, there are other things you can say as well. Talk about the ways that it was helpful to learn about your child’s autism. The newly-aware parent is probably feeling overwhelmed with all kinds of emotions. Emphasize what is good about getting the diagnosis to help that parent get a good start on this new phase of their life. Remind them that their child is still the beautiful, magical, wonderful child he or she has always been. Let them know that the only thing that has changed is that there is more information now, to help them understand their child better.

We should all be as supportive of one another as we possibly can — parents, children, adult Autistics, professionals, everyone. But let’s all try to be extra supportive of the newly-aware parents among us. If you are the parent of Autistic children, don’t white-wash your life but do spend a little extra time talking about the good things. Spend a little extra time talking about great solutions you found that made your child’s life better and, by extension, the whole family happier.

Remind the newly-aware parent that *all* parenting is challenging. This is especially important, because parents whose children are not Autistic cannot say something like that. A parent who does not have an Autistic child is offensive if they remind others that all parenting is challenging because they are not speaking from the same set of experiences, but if you are parenting an Autistic child, please do take the time, when it feels appropriate to you, to remind others that all parenting is challenging because it help to put the struggles of families with Autistic members into perspective. Too often I see *everything* blamed on autism. Other families say “it is hard to transition from one grade of school to the next,” or “that first day of kindergarten is so hard because so many kids get upset when they realize they’ve been left there without mom and dad,” or “the hormonal changes of pre-teen and teen years can be so chaotic!”

Remind that newly-aware parent that they get to say those things, too. Of course it is different with autism because we Autistic people experience and think about the world differently, so we add our own individual flavor to every challenge of growing up and living life. But we are not off in our own world; we live in the same world as the rest of you. We are struggling with the same things everyone is: learning, growing, changing. Our life stories are unique, but just because everything we experience and do is “autism colored” doesn’t mean that everything about our lives that is challenging for those around us is “all the fault of autism.” Gently help that newly-aware parent to realize that blaming autism for everything difficult is the same as saying, “my child’s worldview sucks.” Gently remind them that children are not very good at separating the ideas of “my brain is different and that is a horrible thing” from “I am a horrible thing.”

And, honestly, I think the kids got it right. Any time I try to set my autism on one side and heap all my troubles over there with it and set “me” on the other side and heap all my joys there, I get a massive cognitive dissonance headache. It can take a long time to get there, but help those newly-aware parents learn that autism is not something their child has; it is something their child is. Help them shift their perspective so that they don’t fall into the trap of hating autism and loving their child because that’s a Gordion knot that gets harder to cut through the longer it is being knotted together. If you try to stick a sword into that, you’re inevitably going to cut your child because it is impossible to find the place where autism ends and the child begins. Because that place isn’t there. There is a reason the medical books call autism “pervasive.” It is in every part of a person — there is no part of me that is not Autistic. My brain is an autistic brain and everything I know, see, taste, hear, think, remember, hope, wish, feel, and do comes from that autistic brain. Help the newly-aware parents understand that if they love their child (and you know they do!) they are loving an Autistic child and that’s a good thing.

Early intervention is so crucial for future success. The faster we can get to those newly-aware parents, the more quickly we can soothe their fears, lead them to acceptance, help them to see the joy that they are inheriting from their children every day. Sure, it will be hard — all parenting is. Yes, there are things they can do to increase their child’s chances of success. But they need to be canny and learn as quickly as possible that not every professional has their child’s best interests at heart. They can be choosy and only take those therapies and lessons that help their child to grow strong and healthy. If we can get to those newly-aware parents as quickly as possible, we can save their children a lot of suffering and the parents a lot of grief and guilt. As Megen said, “early identification is so important!” And it is because we have the best chance when we can all help newly-aware parents with the early intervention they need so badly in order to thrive and to help their children thrive.