Thursday, April 12, 2018

Dear child with a disability

Inspired by a good friend's heartbreaking post about their child.

Dear child with a disability: 

Hi. My name is Kitt. I have a disability.

What is 'disability?' That's just a word that means that the world we live in is made in a way that might be tough for you, even if it seems easy for others. You might find yourself working harder to do certain things than the people you see around you.

Dear kid, I know you are trying your best. That's so important. That's a really big deal. I'm very proud of you. 

You know, friend, lots of things take practice. It's okay to need time to get the hang of it. In fact, you don't even have to be good at everything! We all have things that we find easy or have a gift for (have you ever met someone who was such a creative storyteller? Someone whose smile made you feel all warm and fuzzy? Someone who was a good listener? Someone who just gave the best hugs? What's your gift? It's okay if you don't know yet.)... We also all have things we find extra hard (maybe numbers are a tough one for you, or spelling, or walking).

I actually have a few disabilities, myself. 

•I have a disability that makes me feel lots of things really big, and it makes it hard for me to express my feelings in healthy ways.
•I have a disability that causes me to have a hard time with numbers and math.

 have a disability that makes it hard for me to pay attention to things.
•I have a disability that makes it hard for me to put my thoughts into words in ways that other people will understand.
•I have a disability that makes my whole body hurt, and makes me very tired, and sometimes it's hard for me to walk or stand. Sometimes I move really slowly.
•I have disabilities that make it hard for me to remember important things that I'm supposed to do.
•I have a disability that makes my body do lots of different movements when I don't want it to.
•I have disabilities where sometimes my brain thinks thoughts that aren't invited and aren't welcome.
•I have a disability that makes the world seem really big and loud and overwhelming, so sometimes everything seems like just too much, or it all gets mixed up and just very confusing. I think so fast that sometimes I overwhelm my own brain, but I can be very slow to understand things.
•Because of one of my disabilities, I sometimes can't talk.
•Some of them make it too easy for me to worry a lot,  and I feel panic sometimes and need to calm myself down.

But all of these disabilities help me have special gifts, too. I have a very big heart. I'm good at telling stories. I make nice sculptures, and I draw cool pictures, and I notice things other people don't notice and remember things other people don't remember. I can see so much beauty in the world around me that it fills my heart until it overflows. I think in unique ways that others don't. It's very easy for me to learn new languages. I have all these special gifts because of my disabilities. 

I want you to know that it's totally okay to have a disability, it's totally okay to be different (we all are!), it's totally okay to need help with things, it's totally okay to find some things hard. It's okay to need breaks. It's okay to take time to get the hang of it.

Having a disability doesn't mean anything bad about you! It doesn't mean you are missing anything, or aren't enough. You are enough! You are exactly who you are supposed to be.

It just means you might need different support (that means help) than some other kids. That's okay! You might do some things a different way than others do. That's totally okay! In fact, it's awesome! How cool is it that we are all so diverse? (diverse means that we all have different things that make us great and special)! I think it's pretty cool.

You might hear people saying things about you or your disability, or someone else and their disability, and those things might sound really hurtful. Those people don't understand how great and special you are. Some people don't know how to be patient, or know how to let people just be themselves. That is not your fault. You are not the reason other people are mean. They are just that way for their own reasons. No matter what they say, you can just keep being cool and shining bright. You don't have to change who you are. You are your awesome self, and that is that.

So keep on doing your thing, doing your best, taking breaks when you need to and being kind to yourself (this can be tough for some people too, but now is a great time to start practicing). You and I, one day, we're gonna show the world just how awesome people like us are.

You got this, kid. Keep shining.

Much love, 

Sunday, February 25, 2018

Chronic pain, fatigue, autism, trauma, homelessness, in prosetry






I simply *can't* do a lot of things.


But my life right now doesn't allow "can't."


So I have to do the things anyway, even though I CAN'T do them. This contradiction is as painful as it sounds.


It feels like I am my corpse running on the energy I stole from my would-be future self, a ghost cheating physics and metaphysics by somehow still piloting this shell far longer than I should have gotten away with.

Can't isn't an option. Even though can isn't an option either.

I hope better than this for others.

Sunday, May 29, 2016


So many autistics don't even know what our real personality is.

Like, we know who we are as people, we just don't know how we're supposed to express it.

I have had to navigate different ways of expressing it until I found one that was a mix of "I can pass as NT" and "this feels comfortable and natural enough that either I've just gotten used to certain mannerisms or maybe this is something like what I'm supposed to be like."

But I still can't even tell when I'm running a neurotypical "script" all the time anymore because I do it so reflexively and so seamlessly now. I don't even know when I'm being "real," or as real as I can be, and when I'm just blending in. I can't tell the difference anymore.

I mean, sometimes.

It's just hard. It's just so second nature.

It's just so seamless.

"I wouldn't have known if you hadn't told me, you're not like any other autistic person I've ever met" isn't a compliment. Noticing the ways in which I am autistic and celebrating them for surviving would be a compliment.

Acknowledging what I am instead of trying to minimize it would be a compliment

But I minimize it so well myself, don't I. Seamlessly.

A classmate, in the bathroom at my college, told me she hoped she hadn't offended me. What she hoped hadn't offended me was when, in class that morning, she had answered my "I'm autistic" with "I know, I could tell."

I told her it makes me happy when people notice.

Very few people notice.

But I minimize it so well. Don't I?



*I know I don't pass 100% of the time in 100% of the ways. But you have to talk to me for a long time, or multiple times, before you notice it by my social skills. My faux pas are far fewer. I've gotten better at hiding how little I still comprehend about social situations and people behavior. I've gotten better at keeping quiet "as an NT" instead of communicating as an autistic. I've gotten better at faking just the right things. Covering. I can pass as a talkative NT. A talkative, excitable, enthusiastic, eccentric NT.
  My willful, proud stimming, anxiety, coping skills and difficult time doing lots of things without help are what give me away. But socially, in conversation, I can pass if I want to. Most of the time. Mostly who picks me out is other autistics or people who know tons of speaking autistics. (also, I can have an entire "conversationally passing" conversation while stimming up a storm as I talk and emote and gesture roughly like an allistic/NT.)

**that was the longest footnote ever

***I'll have a follow up, of sorts, to this post at some point. Technically, I've already written most of it. I wrote this, all of it, in the last like half an hour or so.

Saturday, November 8, 2014


Your child reciprocates your affection.

Feels. Feels affection.


Look for more than words. Look for more than responding to hugs. That can be so much sensory input for your child that they can't respond.

Don't look only for things you would do.

Don't look only for things that look exactly like your expression of love.

Look for more than words.

Just look.

Look for love.

Tuesday, September 16, 2014

Healthy Living Advice for People with Autism

Earlier in the year, I was contacted by Maggie Danhakl from Healthline asking if I would be willing to take a guest post from them. Over the next few months, Maggie and I exchanged emails. We decided on a practical topic that many Autistic people might benefit from.

During this process of exchanging emails, we talked about language and cognitive accessibility, putting identity first and avoiding pathologizing language. Maggie and Adrienne were refreshingly willing to work with me to create a piece tailored to Autistic readers. I am so thankful to them for their time, effort... and patience! When sending me the final draft, Maggie said, "I've done my best to review it through the lens of my friend who has Asperger's. He has taught me a lot about communicating, spoons, and being very literal." 

I am proud to present to you my first guest blog, Healthy Living Advice for People with Autism, by Adrienne Santos.

Healthy Living Advice for People with Autism

Poor eating habits and inactivity are bad for everyone and we could all use some help stepping up our game in these areas.  The following are tips for healthy living geared at Autistics that can you can use to help you feel your best.

Physical Activity and Autism

It can be difficult as an Autistic person to keep a regular exercise routine. Autistic teens and children are not often encouraged to exercise, and grow up to be adults who do not exercise regularly. Not exercising can put you at risk for obesity, type 2 diabetes, heart disease, and other health problems. [1]Studies show that physical activity lowers the risk of obesity and chronic disease. Exercise can also help Autistics improve motor function, and it can help some Autistic people self-harm less often. Physical activity has also been shown to improve self-esteem, make you feel happier, and can create social opportunities for both Autistic and non-Autistic people. Even with all of these benefits, starting and sticking to a program of regular exercise might be especially challenging as an Autistic person because of difficulty communicating, sensory issues and difficulty trying new activities.

Each person is different with their own set of special requirements and challenges, so offering a one-off solution just won’t do.  The following advice offers a good start:
·         Enlist the help of a family member, a support person or a physical/occupational therapist to help you find an activity that will work well for you based on your own needs.
·         Consider an exercise class or joining a leisure sports team since this allows you the opportunity to be active while enjoying the company of others. Exercising in a group environment also offers a little extra support, encouragement, and direction.
·         Set up a schedule for physical activity and if needed, have someone help you make the arrangements needed so that you stick to a routine.
·         Try an activity that involves repetitive behaviors like swimming or running. Some evidence suggests that such activities are similar to stimming.
·         Work towards a goal, like improving your distance or speed so that you can participate in an organized walk or run. It doesn’t need to be a lofty goal like running a marathon! Start slow and steady. Having a reward at the end helps to keep you focused on your routine.

Eating Well

Just like with exercise, nutrition plays a major role in keeping us healthy. Eating a proper diet helps to keep our immune system strong so that we’re better able to fight off infection and illness, and for those with Autism, a good diet can also help give you extra spoons so that you’re better able to tackle day-to-day activities and challenges. If you suffer with GI issues, like a lot of others on the spectrum do, then a proper diet could help to eliminate your discomfort.

With Autistics, eating a well-balanced diet is often a challenge. For some it can be difficult to set limits on the amount of fatty and “junk” foods, while for others it’s a challenge to get enough food at all. Both can wreak havoc on your health by increasing the risk of obesity or malnutrition. So what’s a person to do? Well, ideally healthy eating habits should be encouraged right from childhood, but for those who’ve grown up with some unhealthy habits, there are things that you can do to help get on the right track.

For starters, keep only healthy foods in the home. You might have to enlist the help of a friend or loved one—who wants to throw out a perfectly good cake or bag of chips, after all?? Buy only healthier versions of your favorite snacks and foods so that’s what you’ve got when you’re hungry.

Cooking can be a challenge, so together with the help of your friend or loved one, choose healthy recipes online that appeal to you and work together to make them. Doing the weeks’ worth of cooking in advance and freezing it lets you have healthy meals that you can just heat up when you’re hungry so you’re not tempted to reach for bad foods in a pinch.

If you’re really stuck on ideas, you can get advice on what to eat for your specific needs from a nutritionist or dietician. Talking to a professional about your diet is an especially good idea if you take medications since some medications have certain dietary restrictions.

You can learn more about diet and fitness by clicking here.

Adrienne is a freelance writer and author who has written extensively on all things health and fitness for more than a decade. When she's not holed-up in her writing shed researching an article or off interviewing health professionals, she can be found frolicking around her beach town with husband and dogs in tow or splashing about the lake trying to master the stand-up paddle board. You can connect with Adrienne on Facebook at

WARNING: Autism Speaks is cited as a source below. Because I had already taken up enough of the Healthline staff's time asking for edits, and because the information itself is not objectionable, I did not ask them to go out of their way to find another source. However, I do not endorse Autism Speaks in any way and I do not encourage anyone to use them as a source. I have removed the hyperlinks to Speaks' site.


·         Edelson, Stephen M. Ph.D. Physical Exercise and Autism. Autism Research Institute. Retrieved May 16, 2014, from
·         Dawson, Geraldine Ph.D., Rosanoff, Michael MPH. (February 2009). Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism. Retrieved May 16, 2014, from
·         Rudy, Lisa Jo. (December 2011). A Winning Match: Fitness and Autism. Autism After 16. Retrieved May 16, 2014, from

[1] Dawson, Geraldine Ph.D., Rosanoff, Michael MPH. (February 2009). Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism. Retrieved May 16, 2014, from

Tuesday, August 5, 2014

Nonspeaking. Real. Self-advocates.

I left a comment on a thing and I'm sharing it here because it's everything I am always wanting to say to people who pull the "high functioning self-advocate" card.

This post was made on Facebook not long ago by a very popular page. It is an image of a tweet from someone who calls themselves "God." (the idea behind this is to make common-sense statements about humanity and how it keeps mistreating its members and making terrible choices as a species.)

The text reads "Some people think autism is a disease that needs a cure. It's not. Autistic people don't need to be cured, they need to be accepted."

Of course, the comments that followed were all about "My nonverbal son who has a low IQ and needs constant care because he blah blah blah and the kids I work with are lower functioning than the self-advocates who say that they are just different and blah blah blah real autistic people don't have a good quality of life and they're aggressive and they are unable to blah blah everything because they can't anything..." 

...and lots of other dismissive, deficit-themed things that completely insult the way many Autistic people live, with many needs and struggles, some of them embarrassing, none of them shameful but all of them being used to dehumanize my fellow Autistics into incompetent, helpless tragedies (people are not tragedies. they are people.) But I'm getting a little ahead of myself. You'll get to read my rant a little further down the page here.

One woman named Mia even wrote "Dear God, my son is autistic. He cannot talk. He will never in this life have full use of his intellect because he is now too old to develop language skills."


Tell that to Carly, who didn't even begin typing to communicate until she was like 12 and now she's going to college independently. Oh, and Emma, who I think was even older when she started typing to communicate and who's that going to college? --oh, that would be Emma.

Of course, these comments have managed to make me feel hopeless, helpless, anxious, and frustrated. They make me want to cry or panic. They make my brain scramble for the words to be understood but my brain is so anxious that I cannot grasp all the whirling thoughts with my chest so tight and my brain constricting. Instead of thinking too much about the negative comments, or getting drawn up into an ill-fated argument with each and every commenter like I am unfortunately prone to doing... I opened up a comment box and I let loose with every passionate thought that I had and explained, as neatly as I could, exactly what my opinion is of people who talk about my friends as though they are hollow sacks of not-person who got stolen and replaced by bad terribleness.

The final product is as follows.

Philip Reyes. Tito Mukhopadhyay. Emma Zurcher-Long. Emma Studer. Henry Miles Frost. Amy Sequenzia. Tracy Thresher. Larry Bissonnette.
 Guys, educate yourself on the number of nonverbal/nonspeaking neurodiversity advocates there are, and there are quite a few, before you make offensive comments about how "low" their quality of life is just because they need extra care. The stuff you people are saying is really offensive to my friends. 

Read any of Amy Sequenzia's essays1 on how insulting it is when you talk about her "low" quality of life and use pity language to talk about her. And then read "Two Houses" by Henry Frost because seriously. You are being told right from the horse's mouth, as it were, how your paradigm makes Autistic people feel and you still aren't listening.

Your attempts to invalidate us by saying that we are all high-functioning "quirky" Aspies and then listing everything that you think is wrong with your poor "severe" kid's life is insulting not just to me and my very real challenges, and my so-called "high-functioning" friends who were speech delayed as children, who endured ABA therapy, who have frequent meltdowns, who have been constantly kicked out of school and sent to the principal's office, who have pronoun impairments, who have faceblindness, who have sleep disorders, who have movement disorders, who have seizures, are motion impaired, balance impaired, spatially impaired, who struggle with self injurious behaviors like biting and head-banging, who wander or elope when it's not safe, who have been institutionalized, who have been homeless and jobless, live in adult foster care, need support workers to help them perform ADLs and IADLS, and usually can't get the services they need, who have been accused of acting out, manipulating and throwing tantrums, who suffer from sensory overload and burnout, who struggle with selective mutism, who have been abused, taken advantage of, manipulated, used, assaulted, restrained, secluded, neglected, tortured, beaten and raped because of their disability -- but to all of my nonverbal or verbally nonfluent brothers and sisters who are fierce self-advocates and do not need your pity and your condesplaining. And I will defend them tooth and nail until people stop painting them as incompetent, helpless victims.

Oh, and Mia: My friend is in his mid-20s and he is learning to type. It is never too late.

Okay, guys. Rally.

Peace, love,


1 Amy's essays:
It is About Respect

Non-speaking Autistic Activist Responds to Suzanne Wright of Autism Speaks

We Are All Part of One Spectrum

Beyond Stereotypes

The Presumption of Competence

I Feel Tired

A Message to Suzanne Wright

My Friends Are the Real Thing

Monday, July 14, 2014

Broken Street #EducateSesame @sesameworkshop

Reposted from Educate Sesame.
My contribution to #EducateSesame flashblog.
Reposted here to reach my own readers.

Broken Street

A sign. A street.

The sign hangs crooked, bent over with age. The green paint fades into the white letters. Nobody knows what it used to say. Three-foot-three, she drums her fingers repetitively against the steel.

"Quiet hands."

Her hands slump from the sign without a word. Not that she has any words to slump with.

There are no words on this street anymore.

Her tip-toes toe what was once a hopscotch board, now a faded, dusty frame. She scratches the sores under her shirt, puckered "o's" where the electrodes were stuck.

On the left. three fat steps descend to the sidewalk. The paint on the door is faded. The sign above the door reads "A Hopeful Place." She can read the sign. Everybody thinks she can't.

Lots of places like this have moved in on the street. Some of them have classes where kids get held down until they look into a pair of eyes, or where their hands are shoved into painful things like paint and water. Where a gummy bear means a positive behavior. Where you get drilled on the same things over and over because your body does not report what you know.

Some of them are clinics where children are fed pungent solutions, some that leave them with debilitating pain. They have tubes put in their arms. Sometimes the kids come out with their faces covered in a sheet, their bodies not moving anymore. Inside A Hopeful Place, there are tables and chairs with straps on them. When she was inside this building, she was strapped to a table and burned by the electrodes that they stuck to her body to make her learn. Because the street is a place of learning.

She has made rapid progress since she walked through those doors. 

She no longer talks like herself. She talks like the other kids on the street now. Crisp, clear sentences, full sentences, pronouns. Without repetition, without free-form cadence. With her mouth, not her hands. But her words don't mean anything anymore. They're just a script, a routine that she's learned to act out. This is how she survives the street.

She no longer moves like herself. She moves, like every other child, in predictable gestures, straight lines up and down her arms and legs and back. She moves with quiet hands. She moves pieces of herself as far away as she can. She locks them out. This is how she...

She no longer gazes at the trickle of a faucet. She no longer stares at the creases of her hands. At the glint of a bracelet. Now, she cements her gaze onto pairs of eyes, lets them invade her, tries to understand their speech sounds while the eyes and their emotion commotion fill her head with static. She can never remember their words, but the eyes are all that matter on the street. She doesn't remember the A's, B's, and C's that they recite while she is staring into their eyes.

She can recall the words they used to say around her. "Independent " (she will never be.) "Intelligence" (there are no signs of.) "Functioning" (she is low.) "Career" (she will never have.) "Comprehend" (she does not.) "Severe." "Finances." "Divorce." "Competence." "Behavior." "Manipulative." "Willful." "Failed." "Fault." "Suicide." "Depressed." "Give up." "Lost." "Stolen." "Missing." "Empty."

"Hope" (that she will become something they can be proud of.)

The words she hears now threaten to put her in past tense. Relegate her to an Autistic yesterday. "Recovering." "Progress." "Healing." "Improving." "Indistinguishable." "Typical." "Reduced." "Acquired." "Reclaimed."

She has walked through the faded doors. She has stepped back onto the street, subjugated, jaded into compliance. She has been trained to subdue herself. The shocks cease when she learns to suppress what comes naturally. Her song that is not good enough for anyone else to accept.

She does as she was trained to do. She does it so well. So she is released to the kindness of the street.

The kids on the street accept her now, because they look past what she struggles with. They do not look at what she struggles with. They do not look at her. They pretend that she is someone who they can accept, someone who is just like them.

It's okay to like her because she is just like us. Elmo told them so. Elmo told them that she was just like them. Big Bird told them that there was hope for her. Grover told them that she could get better if she got special help.

Special help from those sun-bleached brick buildings. Special help from A Hopeful Place.

She does not want any more special help from those faded doors and those big, blocky steps. The colorful signs that hang from the bricks, advertising hope.

With her quiet hands brushing the fabric of her skirt, she watches her feet step-by-step-by-step down the cracked sidewalk, her shoes sending tiny rocks skittering with each step. She drags her heavy legs sadly past Mr. Hooper's empty store, past a cracked and sagging doorpost that has seen too many sunny days, bone-white and splintering off in pieces.

All the color has washed out of everything on the street. A long time ago, people here used to celebrate all the different colors that make the world so wonderful. Now, the people's claims of tolerance and diversity have ceased to have meaning to the children of the street.

Now, everything is faded.

The once-sweet air blows loose and swirling dust through the store's open windows. Friendly neighbors' doors are all closed, and windows are boarded up. Fear of life's vibrant color locks the friendly neighbors captive inside. Nobody wants to meet where the color is brilliant and the doors open wide to children's minds. Instead, clouds obscure the many shades.

Clouds cast everyone in uniform gray.

Puzzle pieces adorn the street. They drain away all the colors of the children, leaving only dust and splintering boards.

This is a pretend-nice place.

A brightly colored top in a patch of grass distracts the eye from the listless uniformity of the people. Even the chalk-rainbow on the next sidewalk square has been washed away.

Ernie slouches his way down the opposite sidewalk, a watery half-smile sitting atop his chin. He lifts one hand kindly, but his shoulders droop under the heavy clouds that cannot be chased away. Cracked sidewalk rises to carry his feet through the quiet. Rust reaches out to him from broken pipes, trying to stain him with surrender.

This is the street. The street is broken. For Autistics, it will always be. Broken. Because this is what Sesame Street has said to us.

You can be fixed. You can be just like your friends. We can help you. You are welcome on our street... if you learn to be someone else.

A sign hangs crooked in the background. It once said "Sesame."

A hopscotch board, with no numbers, only labels.

This is the street.

It is broken.