I have a depressing, socially-isolating disease

That subject line got your attention, didn’t it? Nope, I’m not talking about being Autistic. Autism isn’t a disease and what’s depressing and socially-isolating about it is the way others choose to react to it. I’m just fine with being Autistic.

But if you want to cure something, could you cure celiac disease? Now that’s a depressing and socially-isolating disease. If you could cure my hypernychthemeral syndrome while you’re at it, that would be just grand.

See, I’m staying with a very lovely family and I’ve barely had any human contact in days (And I want to make it clear that none of my current struggles are their fault! They have been nothing but wonderful, gracious, loving, generous hosts!!)  because whenever I live indoors, the hypernychthemeral syndrome (also known as Non-24-hour Sleep-Wake Syndrome or Non-24) kicks in and sets my sleep-wake times spinning around the clock. I showed up on my typical outdoor schedule: sleeping around midnight and waking before nine. That’s what my body naturally does when I live outside and stay away from light other than the sun or some firelight in the evening. It’s not a perfect schedule, but it’s stable and I’m very grateful that sleeping outdoors lets me stay in one spot on the clock like that.

Once I’m sleeping inside a house, with artificial lights in the evenings and walls between me and the sun, that little timekeeper inside my brain, the suprachiasmatic nucleus (SCN) doesn’t get enough of the right signals to function properly and my entire body becomes desynchronized, with all my body systems getting more and more separated from the others.

Think of it as lots of clocks – in my pancreas, my heart’s timing mechanisms, my blood cells, everywhere in my body – that aren’t so great at keeping time themselves so they regularly talk to my SCN to  make the little tweaks to their own clocks so we’re all running on the same schedule.  When I’m living indoors and the light signals are confusing my brain, the SCN doesn’t know what to tell all those other body clocks anymore and they all get farther and farther off course until something breaks. The thing that breaks is different for different people with Non-24. For me, it’s my metabolism that breaks first. I have diabetes that lays dormant when my SCN is getting the right signals to keep everyone’s clocks properly set and rages out of control when I get desynchronized. I carry around insulin but only need to use it when I’m living indoors.

That’s pretty socially isolating. I have to choose between living outdoors with a small pool of people to choose from (Sam’s Club has estimated that a million Americans live full-time in RVs. Those folks, plus the short-term friendships of recreational part-time campers, are my community as a person who has to live outdoors to preserve my circadian rhythms and health) or living indoors with rapidly-declining health in order to be close to the people I had already chosen and the people who have chosen me. I’m the only Autistic person I know who currently lives outdoors, so I get kind of lonely out there for more people who are more like me.

And, as it is, I’m indoors and socially isolated right now anyway because the Non-24 currently has me going to sleep at seven am and waking at one pm — off-kilter and not even fully rested. I am groggy from sleep as the family comes home from their day’s activities and by the time I’m fully awake and really ready to socialize, they’re all heading off to bed. At least I’m spending those long and empty nights quietly finishing the draft of my upcoming book, The ABCs of Autism Acceptance, so that’s a good thing.

And, fortunately, I’m not stuck at this point on the clock. My body will continue to drift later and later. I have estimated that I should be sleeping around five pm and waking around midnight when AutCom comes around. That’s good, because I have lots of work to do there and I will be awake during the time work needs to be done. But it’s still socially isolating because I will be falling asleep when the socializing starts and waking up to wander around, ghost-like and alone, in the small hours of the morning. Depressing and socially isolating, that’s life with Non-24.

And life with celiac is no better. I spent the last few days feeling pretty awful. I thought I was being so good about avoiding gluten, but I learned something new about celiac this week.

I’ve been doing food solo for years, so it was pretty easy to avoid getting “glutened” accidentally. I run a tight ship and I know what my body can handle. There are even some foods that are officially gluten-free but still give me nasty symptoms as if they did have gluten in them (I’m talking about you, Spam!) and I’ve learned to avoid those, too.

It was so wonderful to join in family meals here. Having eaten alone for so long, I didn’t really understand all that literary and religious symbolism about sharing food. It all sounds nice. I know how to draw upon the metaphors in my writing. But I didn’t really feel emotionally connected to those ideas until I started on this nomadic journey back in May and began to have opportunities to “break bread” (so to speak) with others.

My celiac didn’t flare up at my cousin’s houses or my parents’ house. Others in the family are gluten-free, too, so there’s a lot of familiarity among family members with the way I need to eat. But gluten-free eating is a new thing to the wonderful folks I’ve been staying with. They’ve really worked hard to learn what I can eat and cannot eat and I love them for that. But I got sick anyway and had to do some googling. I learned that I can’t eat from cast iron or Teflon-coated pans that have cooked gluten-containing foods. I learned that a grill doesn’t burn off the gluten stuck to it. And, most depressing of all, I learned that if someone dips mayonnaise out of a jar, spreads it on bread, then dips the knife back in, the whole jar is no longer safe for me to eat from.

I’m not eating with the family any more. That makes me sad.

And all that celiac anxiety is set on high right now. After I get gluten-sick, I get really weird about food. “Food is dangerous. Food is toxic,” my thoughts roll around, obsessing about food and dishes and utensils and crumbs in the bottom of silverware drawers and who might have touched what with what. I have food-related nightmares. I alternate between not eating until I get light-headed and rummaging around for something sealed and safe.

I miss family meals together. I am feeling depressed and socially isolated. And all my stomach-soothing medications are gone, so I’m doubly afraid to eat until I can go to the store again because I have run out of the stuff I need to help me out if I get sick again. Depressing and socially isolating.

The next time you feel tempted to pity me or someone else because we are Autistic, remember this: being Autistic makes me happy. Having celiac and Non-24 makes me feel depressed and socially isolated. There are a lot of people out there who try to scare you by describing autism as some sort of life-ending tragedy. Autism Speaks is the biggest culprit but they are by far not the only ones out there talking about us as if we are empty shells of depressing nothingness.

I am here to tell you that there are tragically depressing diseases that need cures and autism is not one of them.

If you want to cure something, find the cure for celiac so I can enjoy emotionally bonding food sharing with others without fear and the very real risk of illness. If you want to cure something so you can improve the quality of people’s lives and help them to be better able to connect with others and be self-supporting, cure Non-24.

Non-24 and celiac are huge burdens in my life. I can’t feel safe eating with others. I can only remain healthy if I sleep outdoors for the rest of my life. If you want to cure something, I’d be very grateful if you started with those.

But if you really want to help Autistic people, we don’t need a cure. We need supports. We need accommodations. We need acceptance. We have a lot of unmet needs and a “cure” for the way our brains are wired is not one of them. The only way you can “cure” the way a person’s brain is wired is to get rid of the person. That’s not something I want to happen to me or to any of the Autistic people I love.

Understand us. Help us the ways we need to be helped. Ask us what we want, what we dream of, what we hope for, what our goals are. Don’t rush in to “help” without knowing what we want and need. It’s not helpful to force things on us that are contrary to our own best interests. Don’t assume you know what our best interests are. Outside of things like not letting people run into busy traffic or stick forks in the electrical outlets, “for your own good,” is not for you to decide.

So, yeah, I have two depressing and socially isolating diseases and neither of them is autism. The things I really need help with  — food and sleep — aren’t in any way connected to the notion of “curing” autism. So listen to the Autistics around you as they communicate their needs, whether with words or in some other language. Don’t assume you know what we need. Help us meet our goals, not yours.

Early Intervention

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.

V is for Vulnerable to Violence and Victimization

V This is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June and July.

The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!

V is for Vulnerable to Violence and Victimization

It is ironic that so many people fear us when Autistic people are much more likely to be subject to violence and abuse than to perpetrate it against others. I’m not saying that we are incapable of being harmful or abusive. Yes, there have been abusive Autistic people and Autistic people who have a difficult time controlling anger.  But violence is less common among us and we are so vulnerable and, in some cases, so naïve that we can be easy targets for predators and abusers. In fact, I’ve discovered that there are some predators who single us out intentionally, because we are Autistic and thus easier to manipulate, more likely to have a weak personal support system to protect us, and more likely to have gone through compliance training that teaches us to accept abuse as a normal part of life.

Now, I know I’ve already talked about bullying, but when I talk about violence and victimization, I’m talking about something more sinister. There are predators out there who seek out disabled children and adults specifically. A free booklet discusses “disability trolls”– people who have sexual fetishes for disabilities and make fake profiles to try to get close to people in wheelchairs, amputees, and other physically disabled people. What makes things less clear when it comes to Autism is that there are some predators who specifically seek out Autistic people and others who seem to have a radar for vulnerability so a large percentage of the people they prey on are Autistic, but more as a coincidence, due to Autistic people having a tendency toward more vulnerability than the general population.

A study by Sobsey and Doe (1991)  found that not only are people with disabilities sexually abused more often than the general population, but that the abuse tends to be repeated again and again, chronically. Sobsey and Doe found that 49% of people with intellectual disability will experience sexual abuse or assault 10 or more times in their lives. Sullivan and Knutson (2000) found that people who are multiply disabled (for example autism and epilepsy, autism and intellectual disability, autism and psychiatric disability, etc.) are at greater risk of sexual assault and abuse. The types of disabilities most likely to be abused, according to Sullivan and Knutson, were those with intellectual disabilities, communication disabilities, and behavioral disabilities — all three are labels that are frequently attached to Autistic people. In short, disabled people are well over three times more likely to be assaulted and abused than the general population and Autistic people, particularly Autistic women, are among the most assaulted and abused of all disabled people. Sobsey and Doe found that 83% of their study sample of women with developmental disabilities had been sexually assaulted at least once in their lives.

And the victimization is not just sexual. A 1992 study of disabled people using a third-party payment system (disability benefits being sent to someone other than the disabled person themselves, typically a caregiver or financial manager) and found that 20% of the third-party recipients were victims of crimes ranging from larceny to murder and “slave trading,” a practice where disabled people are bought and sold from payee to payee, getting little or no actual care and being valued only for their benefit check.  Additionally, the victimization of disabled people is greatly downplayed. It is often reported in the system and in the media as “abuse and neglect”  instead of as the actual crimes that occurred, such as rape, assault, or murder. Crimes against disabled people often go unreported altogether due to being committed by people upon whom the disabled person depends for survival. As bad as the situation appears — and the appearance is quite bad enough — the reality is much, much worse.

Those who have read my previous book, No You Don’t, or the title essay from the collection know that I have had a long history of victimization spanning decades. At this point in my life, I have learned most of the ways predators enlist victims and am, thankfully, able to avoid the kinds of abuse and exploitation that marred my childhood, teens, twenties, thirties, and parts of my forties. But I am still vulnerable and I had a run-in with a predator just a few years ago.  I am skeptical, a quick learner, and a reflective thinker, but I have some difficulty with generalizing knowledge. My classic example from my life is that I have known for many years not to accept a package from a stranger in an airport or bus station but I didn’t generalize that to “don’t take a package from a stranger anywhere” and I didn’t realize a classmate in my university class counted as a stranger — after all, I saw her in class three times a week, even though I never spoke with her, so how could she be a stranger? But I accepted a mystery gift she gave me, claiming it was from someone else I had never heard of before. It turned out to be a humiliating joke that I opened in front of everyone and immediately regretted.

I think this is one factor in the repeated victimization of those of us with developmental disabilities. While difficulty generalizing situations is not universal among us, I’m not the only one who struggles with it. It makes it harder for me to learn how to avoid being victimized because if the approach happens in a different way or a different place or even something simple is changed like the gender or age of the predator I can fall for the same thing all over again, feeling foolish afterward when I make the connection and realize that I missed seeing something that I had already learned before. There are many other factors to re-victimization. A few of them include: not being able to figure out how to break out of a repeated “script,” being too afraid of offending or making someone angry to resist, lacking strong boundaries (often due to the abuses of ABA “therapy”), being lonely and having little social experience to raise skepticism about offers of instant friendship.

My predator from a few years ago was hard for me to spot, in part because I have grown accustomed to predators who want sexual attention from me or who want my money (meager though it is.) This predator was harder to spot because they were looking for something else. I’m not entirely sure what they were seeking, but it involved attention, validation, admiration, and control over others. When they made their first overture to me — offering to mail me a present — they seemed safe and trustworthy because we had 62 mutual friends on Facebook. The huge overlap of our friends’ lists made them seem legitimate and a trusted member of the autism/Autistic community. I had never noticed the person before so I don’t know how long they had been in community, but it is easy to slip in to the Autistic community on Facebook since many people follow the same policy of accepting a friend request from anyone who has at least a few friends in common. (I no longer follow that practice, having been burned by my predator. I now will not accept a friend request from someone unless I have at least talked to them a little. And I periodically “purge” my friend list of the people who “friended and forgot” because they rapidly become an unknown stranger on my friend list if they don’t interact with me.)

It took me a while to figure out what I had gotten into with this predator. They seemed so safe in the beginning. But sending me a gift meant they knew my address. They quickly wormed their way into my life and started trying to plan it for me. It was all “dangling carrots” sort of control — every time they learned about something I wanted or wanted to do, they would say they could help me get or do it and then start manipulating me with all their offers of presents and “help.” Before I knew it, I was caught up in a big plan that included coming out to where I lived and throwing all my stuff into a moving van and taking me to live with them and their spouse (who they spoke disparagingly of and who they also manipulated and controlled.)

They had high demands of my time and energy. They wanted me to video Skype with them for hours every day. I protested, because it was taking up all my time and energy and leaving nothing for me. I couldn’t get housework done, I couldn’t write, I couldn’t just rest and stare at the wall — a favorite pastime of mine, similar to running a defrag program on a hard drive. I became frazzled and stressed. They wouldn’t take no for an answer. They grew more and more demanding. Just as I was about to pull away from them, they started saying they thought they might be Autistic, too. They wanted my help and advice. They pulled me back in. Their demands got larger — I was going to move in with them and go into business with them. I could see that they wanted me because a diagnosed Autistic person would add an air of legitimacy to their business. They were using me as an object, not treating me as a human being.

It all came to a head when my electricity got shut off temporarily due to a clerical error and a lost payment. I was relaxing in the dark. I was stressed. I was naked. There was a knock at the door. I ignored it, as I always do when I’m not expecting anyone. They said they were the police and I froze in fear. They broke down my door — it turned out that my predator had gotten frustrated at not being able to reach me for a Skype visit and sent the police to my door for a welfare check. I don’t want to go into all the results of that welfare check, but I will leave you to just imagine how it went. How would you expect the police to respond when sent to an apartment by a frantic sounding person telling all sorts of wild tales? What would you expect their response to be when they knocked, heard movement, broke the door, and found a naked person, incapable of speech, sitting in the darkness in an apartment with no utilities? It did not go well.

That gave me the courage to break off the interactions with my predator. I was fortunate that the victimization never went past the level of emotional manipulation, but if they had swooped me up and moved me to their home, who knows what would have happened once I was isolated and under their control? And “swoop” is the right word here — the entire “relationship” went from innocent-seeming gift to police breaking down my door in less than two weeks. It all moved so fast and was so overwhelming. I was always several steps behind in understanding what was happening. They took advantage of my Autistic traits and used them against me to corral me into a completely untenable position.

Autism acceptance means presuming competence, but it also means building a community that helps Autistic people defend ourselves against predators. The standard education children get about “stranger danger” is not enough. So many times, the predator is not a stranger or they are very skilled at convincing their target that they are not really a stranger. Predators try to overwhelm us by moving things along fast. Autistic people need to know that it’s okay to slow down, to take our time, to think things through. People who demand instant answers and instant actions from us should be questioned. If they are truly on our side, they will accept a slow response. Demanding that we keep up their fast pace is a “red flag” that can help warn us that a person might not have our best interests at heart.

We need to learn how to locate mentors in the community who we can turn to for sound advice. A mentor could be a parent, a teacher, a trusted therapist, a friend — anyone who has a proven track record of helping us to make decisions that are good for us and come from our own choices. If a new person comes into your life and wants your address, your phone number, wants to make grand plans to uproot your life, wants to push you to a more intimate friendship than you are ready for — anything that makes you uncomfortable — it is good to be able to talk it through with a mentor. It can be a dangerous world and we Autistics are vulnerable. There are people who know that and seek us out to use, exploit, manipulate, and more. We need to be careful and autism acceptance recognizes the risks while working to protect our autonomy and dignity. A person can be competent yet operating under incomplete information. Presume competence, but help us steer a safe course when we ask for advice. Help us steer our own course — don’t choose for us. But help us see the potential obstacles and learn how to avoid them.





Help a Disabled Writer Be Happier and More Productive

Update: Thank you everyone who helped me out! You have improved my quality of life more than I can measure!

My goal has been met, but you might have wanted to help me anyway? If that’s the case, there are still ways to help:

No matter what you choose, thank you so much for your support. It means so much to me. I’m trying to change the world — it’s exhausting! And expensive: I’m going to my first autism conference this September and I’m quickly learning that it isn’t cheap. If you support my work by buying a book and/or spreading the word to others, you are helping me change the world into a place that is welcoming and healthy for Autistic people to live in. Thank you so much!


As some of you already know, I am traveling around the country to meet other Autistics, go to conferences, promote my upcoming book, and live a happier, less stressful life. I have two unmet needs that I have set up a GoFundMe campaign to help me with. Please read and share my campaign. Thank you!


U is for Unity

UThis is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.

The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!

U is for Unity

“The point in history a which we stand is full of promise and danger. The world will either move toward unity and widely shared prosperity – or it will move apart.” – Franklin D. Roosevelt

Which direction have we moved since Roosevelt’s warning?

I look around me and see a world that is struggling to move toward unity but which still has a long way to go toward that goal. Compared with that point in history at which Roosevelt was speaking, we have made much progress in unity among people who are racially diverse, who adhere to diverse religions or no religion, who have different genders. We have passed ADA and work daily to enforce it. We have taken steps to address class and income diversity. Yet we see racial conflict daily and the United States is still a place where white people benefit, mostly unconsciously, from institutionalized racism. We still see battles between adherents of different religions, mistrust and discrimination against people based on religion — particularly discrimination directed toward Muslim Americans, mistrust and fear directed toward atheists (an academic study of public opinion found that more people would trust a known rapist than would trust a known atheist), employment glass ceilings for women and those of minority genders, ableism and abuse of disabled people both in institutions and homes, sheltered workshops where disabled people are paid pennies for their work, and the income gap is wider than it is been at any time since the Great Depression.

Autism acceptance demands joining the struggle toward unity. When I call for unity, I’m not saying that everyone should be the same as everyone else. I am talking about the kind of unity composer Felix Mendelssohn spoke of when he said, “the essence of beauty is unity in variety,” or the unity of George Herbert Mead’s  declaration that “society is unity in diversity.” I am calling for an understanding of our interconnectedness coupled with a respect for human diversity in all spheres of our being, including, of course, neurodiversity.

In my experience, Autistic people and our allies are too often isolated from the larger disability community. Ari Ne’eman, co-founder of the Autistic Self-Advocacy Network (ASAN) and the first Autistic person to serve on the National Council on Disability spoke of this separation in a roundtable discussion in 2012, saying:

I think we have a tremendous amount to learn from the larger disability world, and I fear this is something that autism does not do a very good job of. No one who had absorbed the lessons of Willowbrook and Pennhurst would think it was a good idea to build special “Gated Communities” to house autistic adults and others with intellectual and developmental disabilities. No one who knows the history of the Jerry Lewis telethon and the objections made by people with muscular dystrophy to being portrayed as pitiful, “half-people” by its star would ever conceive of something like the “I Am Autismvideo. No one who knew the names Ed Roberts, Judy Heumann or Justin Dart and the history of all they accomplished for people with disabilities would ever doubt the meaning and importance of self-advocacy by and for us, instead of on our behalf. Yet, these are not things we think about or have even heard of in the autism world.

Things are slowly changing since Ne’eman made these observations, but still so much of the world of autism is isolated. Mainly it is Autistic academics and activists who are venturing beyond our borders, but the larger Autistic/autism community is opening to wider unity all the time. We are forging close alliance with others with developmental disabilities, particularly people with Down Syndrome and Cerebral Palsy, but our connections don’t stop there. The larger disability community has battled an internal schism for years and the time is ripe for Autistic activists to join the fight against internal ableism. For so many years, many of those with mobility disabilities and other physical disabilities have said things like, “my body is impaired but my mind is strong and good.” This is a very understandable thing to say, but it created a climate unfriendly to those with neurological and psychiatric disabilities. The larger disability community is strongly challenging those attitudes now, though, and as a result there is increased unity among people of diverse disabilities, increased solidarity, increased ability for all of us to work together for the rights of all of us.

It is time for Autistics and our friends, families, and allies to join the larger fight. It is time for us to turn our attention outward and work to help others as we allow them to help us. We are all connected through the shared experience of disability. Our disabilities are different — just as each Autistic person has their own, individual experience of autism — but the stigma and social barriers we face are strikingly similar. Autistic people and the rest of the disability community have much to offer each other. But I think many Autistic people and their supporters shy away from working within the larger disability community because of fear of that word, “disabled.” That fear points to an internal division within the Autistic/autism community that needs to be mended as well.

Within the Autistic community, there is a schism not terribly different from the brain/body schism the larger disability community is working to heal. Within our community, there are those who insist on only portraying autism’s strengths, who fear words like “disability,” who cling to the label “Asperger’s” which is no longer a diagnostic category and is in the process of fading into the past as a piece of medical and autistic history, not unlike other terms such as “dementia praecox,” “manic-depression,” or “sexual inversion.” Now that all forms of autism have been united under a single label, the main purpose (other than historical) of the word “Asperger’s” is to draw an “us vs. them” distinction within the neurotribe of autism. It is a “dog whistle” that speaks a code of “functioning labels” and  supremacy. It is a way to say, “don’t mistake us for those people who wear adult diapers and a head-restraining device.” It is a way to maintain division within the community.

And division will not move us closer to unity.

And Autism Acceptance demands a call for unity.

Autistic people who say “different, not disabled” need to stop and think about the message they are putting forth. Because of their fear of being considered less-than, because of their fear of taking on the stigma fellow Autistics  live with every day, because they are hovering at the fringes of activism and advocacy, trying to “pass” as non-autistic and focus only on Autistic strengths while often diminishing or dismissing Autistic needs, they are actively working to increase division in the community. Those who don’t have the privilege of passing, even for a short time, are left out of their description of Autism. In insisting that autism is not a disability, they drain the compassion of those who would otherwise want to assist and accommodate us. In insisting that autism is not a disability, they help make the overall movement of autistic advocacy and self-advocacy look like a game or a collection of lies — anyone who knows or is an Autistic person who cannot pass and requires accommodation can see right through that game and can see the harm it does to the larger Autistic community.

Autism is a difference AND a disability. Disability does not mean “incapable of anything.” It does not mean “less than.” It simply means having some condition that contributes to some limits in a person, both inherently (such as not being able to speak or not being able to recognize faces) and socially (such as being passed over for jobs because of a cultural lack of belief in the competence of a particular category of people.) When Autistic people face challenges such as difficulty in face-to-face conversations and social limitations such as only 15% of people diagnosed Autistic having full-time jobs at the level of which they are capable of working, autism is undeniably a disability. Arguing against the disability of autism is arguing against a united voice that advocates for the needs of all of us. Arguing against autism as a disability is arguing against our unity.

It is not just unity within and unity with the larger disability community that we are called to support. We need to seek unity with all marginalized people, all people who face oppression. We need to seek unity with People of Color, with people of all genders, especially transgender, non-gender, intersex, and other minority gendered people. We need to seek unity with everyone who suffers discrimination for who they are. It is in this way that we fight against a society that holds up a monolithic notion of “normal” and “perfect” that is oppressive to everyone, but especially to those who fall outside society’s “circle of virtue.”

It is only through seeking unity that we can protect other vulnerable and marginalized people and, in fairness, hope for them to protect us. Many people in our own neurotribe are multiply marginalized, so supporting the rights and needs of impoverished people, People of Color, people of diverse gender expressions and so forth, we are supporting and protecting our own Autistic siblings as well as reaching out to the larger community and working toward a realization of that interconnectedness all humans share. Seeking unity with all people helps build that just and prosperous society Roosevelt dreamed of. Seeking unity makes us all part of the solution, not part of the problem.

It is worth paraphrasing Martin Niemöller’s famous poem about Word War II Germany and persecution under the Nazi regime:

First they oppressed the People of Color
and I did not speak out
because I was white.
Then they oppressed the Transgender People
and I did not speak out
because I identify with the sex I was assigned at birth.
Then they oppressed the Psychiatrically Disabled
and I did not speak out
because I was not diagnosed with a mental illness.
Then they oppressed those Autistics Who Needed Round the Clock Care
and I did not speak out
because I was able to live independently.
Then they came for me
and there was no one left
to speak out for me.

This is our lesson, this is our mission, this is our clarion call: unity.





Autistic Pride Day 2015 – Letter to Myself as a Child

Celebrate NeurodiversityI have been wanting to write a letter to myself as a child for a while now and Autistic Pride Day seemed like the perfect day to do it. As I thought about what I would say to myself if I could reach back in time, I realized that there is not one single “me as a child.” So this is a letter to many of my past selves over time.

I have tried to write in ways I would have understood at different ages. If I could only give one message to myself at any age, it would be this, “stop taking the blame for the bad things other people do to you.” I was so hard on myself. Why? Because others were hard on me. How ridiculous is that? Over and over, I punished myself for what other people did to me. So I got punished twice. I want to apologize to myself for making everything even harder than it had to be. And I want to forgive myself, too. I was just trying to survive a difficult life with the “tools” I had.

Dear Sparrow at three-years-old:

You are such a good girl! I love it when you are happy and singing. I see how hard you try to always do the right thing. Always remember that I love you and that you are such a good girl.

Dear Sparrow at seven-years-old:

I am so sorry about how school has turned out for you. I remember when you were four years old and so excited on your birthday because you were finally old enough to go to school. Going to school was almost all you could think about. And then it happened and it didn’t live up to your expectations at all. The teachers are teaching things you already know and the other students don’t treat you well. Sometimes the teacher doesn’t treat you very good, either.

I will tell you a secret: those other students are treating you badly because they don’t understand you and that scares them. I will tell you another secret: don’t tell the other students that you know that! Whenever you know something that helps you put up with how hard life is, don’t share that with the people who are making your life hard because they will just make fun of it and find ways to take that away from you. Knowing that they are treating you mean because they don’t understand and are afraid is like having a secret shield to protect you from feeling as bad when they are mean. Don’t let them know you have that shield.

Sometimes people you trust are telling you that the bullying you are getting is your own fault and that if you could act more like the other kids, they wouldn’t bully you. Don’t believe that it is your fault! It is not your fault that you are being bullied by others; it is their fault that they are bullies! There are things you don’t understand and what do you do? You try to learn more. You don’t turn into a meanie about it. So you know that the other kids could stop being bullies if they wanted to, but they are choosing the lazy way of staying afraid and not learning about you. Isn’t that sad for them? This is your secret shield to help you stay strong when they get mean. Never tell them, but just know inside yourself that they are being mean because they are too lazy to learn a better way to be. It’s okay to feel sorry for them. Feel sorry for them in secret. It’s part of your shield.

Yes, you really are different from the other students. That doesn’t make you wrong. It doesn’t mean you should try to change who you are. There is nothing wrong with being different and hopefully some day those other students will learn that. Right now, I want you to learn it. Being different doesn’t make the bullying your fault. Being different is not “bringing it all on yourself.” And those people who say you “insist on being different” or are trying to “show off” are wrong You are different because you were bon that way. Never be ashamed of being different. Be proud of who you are!

Just pay attention to the things you have control over. Try to be a good person. Try to do your school work as well as you can. And remember your secret shield and stay strong behind it.

Dear Sparrow at twelve-years-old:

Your life is changing so much! Everything is going to be different in middle school. Try to talk to an adult you trust about the things that are hard for you. Tell them how much it hurts to write with a pen or pencil. They ‘know that your handwriting is really bad but they don’t know that it causes you pain to write. You haven’t told them because you didn’t realize that the way writing feels to you is not the way it feels to everybody. Tell them that it hurts. And if they don’t hear you or don’t understand, tell them again. You have a condition called dysgraphia and that’s why you have been having a hard time getting your school work done. If your parents and teachers can understand that you have a handwriting disability, they can get you help. Or maybe they will start letting you type your school work like you’ve been asking to do for so long. They just have to understand that it hurts and they can’t understand until you tell them.

Middle school is going to be harder so you need to get ready for it. You need an IEP plan. You can’t be expected to know what that is, but if you tell your parents and teachers about the things that are hard for you and try to tell as much detail as you can, they can work for you and get a plan in place so that you can get help with the hard things, like handwriting. Tell them how the other students treat you. It’s just going to get harder for you next year, so you need to make sure the adults understand right now what is happening. No adult is with you in every class, every minute, so you have to tell them about the things they weren’t there to see. They don’t know what is happening when they aren’t around.

You have such a bright future waiting for you and an adult life where you will not be stuck all day with people who treat you badly. You will have a life where you can make choices for yourself and the more you are able to get help right now with the things that are hard for you, the brighter your future is going to be. Stay strong. Remember your secret shields. Get trusted adults to help you with the things that are hard.



There are things I would like to say to myself at fifteen-years-old, but it starts getting too intense and too personal at that point for me to feel ready to share with others. If I were to give enough advice and encouragement to myself before that point, maybe my teen years wouldn’t be so hard anyway. Who knows what my adult years would look like?

At 48 years old, I’ve finally managed to carve out a life that makes me happy. It doesn’t look very much like the American Dream. But it suits me well. If I could send these letters, and so many more, back in time to my younger self, maybe I wouldn’t have had to wait this long to figure out where I fit in this world.

But there is no time machine hidden inside a mailbox. This is my life and I am happy with where I’ve ended up. Would I have wished for other things? Yes. Yes, the life I wanted is so different from the life I have. But I’ve found a happy place in this life and I’m grateful. I can’t really send letters to my younger self, but I can write them. And she’s still here, inside me. She’s reading these letters. She’s healing every day.


T is for Toe-walking, Trauma, and Truth-telling

This is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.

The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!

T is for Toe-walking, Trauma, and Truth-telling

This is not quite the grab-bag of topics it might appear at first. There are connections among these three things.

Toe-walking is a very common trait among those with developmental disabilities, particularly autism. While walking around on tip-toes all or most of the time can also indicate other conditions such as cerebral palsy or congenitally tight Achilles tendons, it’s become associated most with autism. All children walk on tip toes sometimes. Most children stop doing it much or at all somewhere between the ages of 2 and 5. Autistic children tend to keep toe-walking a lot. Plenty of adults still toe-walk and I used to be one of them, but I trained myself to stop doing it over the course of the last ten years because I am trying to cope with the physical damage caused by 40 years of toe-walking.

Toe walking has always seemed natural to me. I remember being reprimanded often in my pre-teen years whenever I was seen toe-walking. I honestly tried to stop doing it, but as soon as my attention wandered away from my feet, I’d be right back up on my toes again. I remember my mother taking me to a doctor to discuss the options. He talked about surgery or putting casts on my feet. My mother felt those options were too extreme (and I tend to agree with her) and tried to just help train me not to do it anymore — a task that sounds easier than it actually was, because toe-walking was comfortable for me and so it was a deeply persistent trait.

What I’m about to say may not be popular. I’m not so happy about it myself, to be honest. But many times I see people who support autism acceptance (which, as you know, I deeply support as well!) saying things like, “why do people get so upset about toe-walking? Let people be their Autistic selves!” If you’re talking about hand-flapping, I agree. Lack of eye contact, I’m fine with. Twirling around, jumping up and down, all kinds of stims are totally fine and should not be suppressed. They are part of who an Autistic person is.

But toe-walking is a bit different. I put it more in the category of things like head-banging. Head-banging is not safe. It can lead to permanent brain injury. When someone is banging their head against hard things (and I speak as someone who has done this plenty, myself) it is important to help them find a different way to express their emotions and fill their needs. It is important to find out why they bang their head (are they trying to communicate something? Does their head hurt and they’re trying to relieve or express the pain? Are they frustrated or feeling overwhelmed by emotions and banging their head soothes them?) and try to help the person find a different way, a safer way, to fill the need that head-banging was filling.

Likewise, I have learned that toe-walking up to middle-age is dangerous. My tendons have shortened and I get injured more easily. In fact, I have been nursing a foot injury for well over half a year now. I sleep with foot braces that hold my feet in a position that helps stretch my Achilles tendons. I limp a lot. I am in pain nearly constantly. It is because decades of toe-walking will re-shape your feet in many detrimental ways. Because of those changes and the injuries I’ve sustained, I’m sometimes forced to take a few steps on tip-toe as I “warm up” and stretch out the tendons for flat-footed walking or else I couldn’t walk at all.

So here’s the first connection: toe-walking can cause lasting trauma. But in addition to the physical trauma I have from decades of toe-walking, I also live with the psychological trauma of being repeatedly corrected for toe-walking. It’s a tricky thing. All the times I was told to stop toe-walking made an impression on me and kind of melted in with all the other times I was corrected for all the other things that were either beyond my control or so deeply ingrained that I often felt that I was spending every ounce of my focus on remembering not to do the countless things I was always being told not to do. It was overwhelming!

I don’t have an easy answer to how to help steer an Autistic person without making them feel traumatized by feeling like they are always being told that they are doing everything wrong, but here’s a good place to start: don’t try to “fix” everything. Hand-flapping? Not a problem. Work on educating the rest of the world that hand-flapping is a harmless motion that some people engage in for various reasons. Don’t try to normalize the person; normalize hand-flapping. My boyfriend hand-flaps sometimes in a loving imitation of me when I’m excited. I find it charming. He is not put off by the ways I move and it is a dear way for him to show how “normal” he finds it.

This is one of the problems with therapies that seek to make us “indistinguishable from our peers.” If you try to stop us from doing anything that looks Autistic, you will be constantly picking at us to stop almost everything we do and we will feel overwhelmed and traumatized. So pick your battles. Hand-flapping is fine. Focus on things like not hitting siblings, keeping body waste inside diapers or toilets, not biting others, not banging one’s head against hard things . . . and toe-walking. Don’t worry about it at a pre-school age. Every pre-schooler toe-walks some amount, often a lot. But gradually work on flat-footed walking. If your child is receptive to verbal reasoning, explain to them what will happen if they spend too much time on tip-toes. It’s not too different from what happens to women who wear very high heels a lot (although it can be more damaging. Imagine if women started wearing high heels every single day at, oh, age seven or so, when their feet are still forming and growing), so it shouldn’t be too hard to find some information and other first-hand accounts of the long-term damage toe-walking over the course of many years can cause.

Already you see the connections: toe-walking is a body-truth and trauma can be caused both by decades of toe-walking and by trying to correct toe-walking too vehemently (especially while trying to “correct” everything else, most of which does not need correcting.)

Trauma is a big deal for autism acceptance. I believe that many of us Autistics are more easily traumatized by some things than other people are. I also think that many of us Autistics have had to endure things that are more traumatizing than a childhood (or adulthood) ought to be. And I think trauma often puts us at odds with ourselves when it comes to truth-telling.

There is a myth that Autistics are incapable of lying. It’s wrong. We can lie. Many of us aren’t very good at it. I hate lying for several reasons but one of the biggest reasons I hate it is because I’m just so darned bad at it. It’s stressful to try to keep up with a lie. It’s stressful to get caught out when lying. It’s stressful to feel bad because I’d rather not be lying. Chavisory commented on my blog that one reason she loves the story of Donald Triplett, the first person diagnosed with autism, telling others how many bricks were in the façade of a building is because he admitted later in an Atlantic Monthly article that he had lied and made up the number. She loves how that busts the stereotype of Autistics as being incapable of lying. Triplett knew that the people asking wouldn’t check to see if he was right and because they were so interested in seeing if he knew (and he was so eager to win their admiration) he lied and made up a number. And got away with it. Autistics can lie. We are more likely to tell the truth, even if it’s an uncomfortable or angering truth. But we can lie.

Trauma can rob us of the choice to tell the truth. For example, if we are traumatized enough about a particular aspect of our behavior, we may resort to lying in order to avoid getting reprimanded yet again. But, for many of us, lying is traumatizing in itself. So trauma can re-traumatize again and again by forcing us to lie. Truth-telling and trauma are linked. If you always get shouted at or even hit for doing something that you can’t help doing, you start to get sneaky and learn ways to hide it. Or lie about it. And pretty soon, you start feeling like your whole life is a lie and all you are doing is trying to maneuver around the trauma spots and not get caught. This is not just Autistics. Anyone forced to live a lie can come to feel traumatized by the constant requirement of pretense. It doesn’t matter if it’s a gay teen trying to hide their identity from judgmental parents who might kick them out of the house, or a Black person who has to be constantly aware of how they move, look, speak, walk, and so on in order to not be accused of shoplifting or worse, or an Autistic struggling to not flap their hands, pretend to maintain eye contact (but not too much eye contact!), and speak in ways that other people expect them to. Living a lie is stressful and traumatizing.

Encourage the Autistic people in your life to be truth-tellers — not by threatening punishment if they lie, but rather by setting up an environment where it is okay to be who they really are and where even dangerous actions like toe-walking and head-banging are met first with an attempt to understand why they need those actions, then by helping to find alternatives and lovingly mentoring the Autistic to be the best, safest, healthiest, most free, and truest Autistic they can be.  Recognize how easy it is to traumatize someone by outlawing everything that is natural to them and don’t compound trauma by pushing them so hard to be someone they aren’t that they are forced to lie about things, especially things that are so much a part of who they naturally are.

Autism acceptance means helping, mentoring, guiding, but never trying to re-shape an Autistic person for no good reason beyond the comfort of others. If you accept Autistic people, you will accept that we often move differently, communicate differently, and think differently. Autism acceptance does not mean just letting us “go wild.” We need mentoring just like anyone else. Autism acceptance means working to understand why we do things and carefully judging before you try to change our behavior: do you want to change it to help us be healthier and happier? Or do you want to change it because you think other people will not accept us the way we are?

If you think people will not accept us because we look, think, and communicate differently, do not  try to make us into people we aren’t. If you think we will not be accepted, you must work to change the world into one that can accept people regardless of neurology, color of skin, religion, or any other of the myriad things that contribute to the glorious diversity of human beings.

Do not traumatize us in the name of helping us fit in.

Do not try to make us smaller; work to make the world’s heart bigger.


Get every new post delivered to your Inbox.

Join 1,142 other followers