Monday, June 1, 2015

On Verbal Speech

By Kit Mead

I worry about being taken seriously if I write about certain things non-anonymously. Today I decided to write about them. Verbal speech tends to be a pre-requisite of society, and what would people say outside the disabled community if they read this and know that speech isn't all that great for me?

Anyone who has seen me talk out loud knows speech is not, perhaps, my first language. My first language was writing cat stories about a fictionalized version of my first kitten, Tabby, lost in a world of written words. I was in third grade and this is what I liked to do: Write and write and write.

My speech works best when I can read off my laptop, or if I've typed it out in advance. It's why my conversations with friends about activism tend to be with my laptop open. I'm telling them about the posts I already wrote and quoting, and also paraphrasing with words that make me sound slightly angry. I don't have the access to prettier out-loud language.

Okay, sometimes I actually am angry, but usually not as angry as I sound out loud.

Someone once told me I was more expressive than this other autistic person they knew. I wish they knew that my real words come down on paper or Word documents. They spill out faster and with more clarity there than I could hope to achieve out loud unless I have prepared over and over again in advance.

And I don't want to prepare over and over in advance unless I'm actually giving a presentation. Because I need people to accept me with my slightly stop-and-go conversations with words hacked into pieces and sometimes losing their meaning. I need people to know that I don't always mean what I say because I can't always have words out loud.

Tuesday, March 17, 2015

On Being An Unexpected Kinesthetic Learner

I start to rediscover that I’m a kinesthetic learner, and it’s odd.  It’s so contrary to everything I’ve ever been told about myself, and it feels so good.

When we started learning about multiple intelligences theories, kids who were described as kinesthetic—as learning most naturally through movement or action—were dancers, naturally talented athletes, the class clowns, physical actors, the kids who could never sit still.  Kids who were always in trouble for not being able to stay in their seats, likely to pick up a diagnosis of ADHD somewhere along the way.  High-energy, daring, uninhibited, and loud.

And I was very quiet, very still, very inhibited.  I was always in trouble in PE for not knowing what in the world I was doing or being totally unable to keep up with the rest of the class.  I was badly coordinated and nowhere near fast enough for any team sport.  I never placed in any event in Field Day.  I failed out of gymnastics.

Kinesthetic learners were generally thought not to do well in school because of their need for activity and movement.  I sat quietly in class and got all A’s. I had a photographic memory.  Teachers were always scolding, “You can’t expect to only study the night before and do well on this test!”  But I could.  I got into the gifted class and kept my hands rolled up in my sleeves.

But all the while, I just ached to be taught how to do things.  I clawed my skin off from having not enough to do with my hands.  And I could feel the terrifying void that existed between the fact that I knew about a lot of things, but I didn’t know how to do almost anything.  The scrutiny of other people was literally paralyzing.  I resented more than anything as a kid when we’d be told that we were going to learn how to do a really cool thing, but then what we actually got was obviously a fake, dumbed-down version, of making gingerbread houses or uncovering fossils.  People told me a lot about how I was never going to make it in the real world, but nobody seemed to want to teach me anything real.

But writing is movement, too, and I was better at that than most people.  So is beading.  So is loading electrophoresis gels, and my biology classmates marveled at my dexterity at that.  

As a child, making tuna salad or cutting up fruit for myself, people try to take knives away from me, sure that I’m going to cut myself, but I never do.  (They do.)  I never fall on steep hills or icy sidewalks when adults are sure I will.  I never sprain an ankle toe-walking.

I could feel that if I could know a thing in my body, in my joints, in my bones, in how it behaved in my hands…anything I could make a physical habit out of, was a thing I’d always be able to do, that I could never really lose or forget, the way I’ve forgotten calculus almost entirely from disuse, and chemistry, and how I’ve lost my photographic memory to other cognitive demands.  (That one makes me mad.)

I start stealing opportunities to do that.  Time without a well-meaning adult hovering over my shoulder was time to steal fire.

We have typing class in 9th grade, and once I start learning, my fingers twitch constantly, ghost-typing out any sequences of overheard words against my thigh.  I had no idea what was wrong with me, why I couldn’t stop.

I was in high school, and may’ve been listening to a lecture from my grandfather about the difference between people who work with their minds and people who work with their hands, and thought silently, “If I don’t work with my hands, I’ll go insane.”

My acting teacher tells me to get my hands out of my sleeves.  I turn out to be good at acting.

At a new job, I initially panic when I learn that my nightly duties will involve moving pianos by myself.  But I quickly get a sense of the individual moods and idiosyncracies of the Hamburg, the New York Steinway, the Fazioli—their resistance and center of gravity.  They almost have individual wills, like baby elephants.

I get told at a meet-up that I have very loud hands, and it makes me so happy.

I start teaching myself a little ASL to make up for the apocryphal childhood gesture language I was trained out of, that I have no conscious memory of, and it feels like breathing air instead of doing complicated sorcery.

Tuesday, February 3, 2015

Do You Believe In Your Children?

Sometimes a parent of an Autistic child will dismiss what I have to say about autism. One would think that 47 years of living Autistic would give me some measure of insight, but they say, "you're not like my child. You are so high functioning. You drive a car. You have university degrees. You write so clearly and articulately. My child's autism is severe. My child will never do those things. You're so functional, I can't even think of you as having autism at all."

I've written a fair bit about how painful those kinds of statements are to me. I've talked about how dismissive it is of me, my experiences, my struggles, my failings and my accomplishments. Telling me I'm "not impaired enough" to even call myself autistic reduces me to a static snapshot of this moment in time -- worse, of someone else's perception of this moment in time. There is so much of me they cannot see in plain text on the internet. They have looked at one facet of me -- my facility with written communication -- and reduced my entire being to that single detail.

But today I want to talk about how harmful those statements are to someone else. Yes, they are insensitive and hurtful to me, but what is infinitely more important is that they are damaging to the child to whom I am being compared.

A child -- any child, not just an Autistic one -- is a work in progress. By this I don't mean that they are a someday-person. Every child is real and authentic and fully human in this moment, perfect just as they are. But they are also a sort of seed of the adult they will hopefully grow to become. And, to extend this analogy, think for a moment about how plants grow. If you could only see the seeds and bulbs and spores and had no idea what plants they would become, wouldn't you think an iris bulb held so much more growth potential than a sunflower seed? Yet, given time, the sunflower will tower high above the iris blossom. Tiny acorns grow into massive oaks, but before oak trees scrape the sky, that even smaller bit of dandelion fluff will take over the entire meadow, filling it with sunny yellow flowers.

The seed is not the plant. The child is not the adult. And children are such mysteries when compared to seeds. The experienced gardener knows how much harvest she will reap from a row of radish seeds, provided no accidents such as drought occur. A parent can give birth to a dozen children and still only have rough ideas of how that twelfth child will turn out, given no accidents that sway the course of the child's growth or cut it tragically short. Parents see things, many things, but not everything.

My sister (who happens to not be Autistic) was very gifted with mathematics in her teens. There came a point, in middle school, when my father could no longer help her solve problems, despite his degrees in chemical engineering. My sister was calculating problems involving things such as trains traveling through spiral tunnels. It seemed obvious to all of us in the family that she was destined to be a scientist or mathematician when she grew up. Her aptitude in the STEM fields was tremendous.

Imagine my parents' shock when my sister declared art history as her major in university. She went on to work for a non-profit protecting historical architecture before marrying and becoming a stay-at-home mom to two delightful little girls. She was an acorn that grew into a daffodil! I say that not to devalue what she has done. Hers is a well-lived and splendid life and daffodils have intrinsic value. But they are a shock when one expects an oak.

Children are unpredictable. Their life trajectories are hugely unpredictable. And, in many ways, Autistic children are even more so. Although I believe that autism is nothing new and Autistic people have always been among us (though unrecognized and called by other names) a clear understanding of what autism is and what the autistic lifespan looks like is still to come. These are uncharted paths that are in the process of being discovered by researchers, by parents, by Autistic people ourselves.

So . . . what is it that you are actually saying when you look at my life and say that I am not like your child?

In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change. You are not just reducing me to a static snapshot. You are doing the same to your child.

Maybe you look at me driving long distances and then look at your 16-year-old who wants to drive but is not ready yet. You don't see that I was not ready to drive at age 16, either. I didn't get my license to drive until I was 25 years old. And even then, I was shaky and unsure whether I was making a wise decision or not.

Maybe you look at me writing detailed descriptions of my inner thoughts and understanding and then look at your 14-year-old who is writing surface descriptions of things and can't even explain why she does the things she does. You don't see that I was not able to begin to explain my actions or seek help for internal suffering until my twenties -- and not really in any meaningful way until my thirties. You see my blossoms and don't recognize that they are late blooms.

Maybe you look at me sitting in university lectures and passing exams and making the dean's list and then look at your 7-year-old who needs a one-on-one aide to be allowed to stay in a classroom at all. You don't see that I was hiding under the table and biting people in my first grade class and the teacher protested until I was removed from her classroom. I was still quicker with blows and bites than words at age 15. It has taken a long time and a lot of work to become a person who can deal with stress and conflict without exploding and lashing out. I dropped out of high school. I tried university at age 22 and had to drop out. I got my first university degree at age 40. I dropped out of graduate school. My trajectory has been anything but smooth.

So if you really do think that I'm not like your child, you should stop and remember that I am decades older than your child. And you should stop and ask yourself why it upsets you that I do think I am like your child.

I think I am like your child because I can see a kindred spirit in your child and because a doctor put the same word, autism, on my different way of interacting with the world as a doctor put on your child's ways. I think I am like your child because when I look at your beautiful child, I see a person but also a seed of the person to come after. I see potential in your child and I think it is magical and wonderful that your child is still being formed -- still forming herself. I see a million different paths your child's life could travel down and it is mysterious and I feel like holding my breath as I watch her grow.

If you think I am not like your child, I ask you: do you believe in your child? Do you leave the possibilities open? Do you nurture your child so that he feels safe to grow into the adult he is germinating inside himself?

If you believe in your child and you believe in your child's possible futures, I ask that you also believe me when I say that I am like your child. I am like your child and I think she is wonderful beyond the telling. Please, will you believe in her wonder and possibilities, too?

Sunday, December 7, 2014

Ability is more than the sum of savant skills.

A lot of the time, when I ask parents and teachers to consider a neurodiversity perspective of autism, or to look for what their children’s strengths may be and not only their deficits, people will retort, “My child doesn’t have any savant skills!”

And so I wanted to address the relationships between what we commonly think of as “savant skills,” and communication, expression, and the deficit model of autism.

Autism is commonly conceived of only as a set of serious deficits, except for when it confers spectacular, miraculous-seeming, but isolated savant abilities or splinter skills. 

This is a problem.


I was kind of already thinking about these things when I ran across this post, about splinter skills as simply very specialized expressions of things that are otherwise just called talents, and this paper, which describes savant skills as specific perceptual strengths for which the time and tools necessary for reinforcement are available.  (Note: the paper is in very dense, abstract, and academic language.  It's a rewarding article to read, but it is not written in accessible language.)

I’ve always presumed myself not to have a savant skill.  I certainly don’t have any of the stereotypical, conspicuous ones like card-counting, calendar calculation, or photorealistic drawing.  But I’m not totally sure anymore that’s true.  Or at least, what my actual core strength is, is fairly ultra-specific and manifests in a relatively narrow band of tasks.

And I think it’s something related to perception and filtering of information about time.  (How’s that for obscure and specific?)

This thing about timing is something I feel like I’ve always had as a primary perceptual bias. It’s an entirely non-verbal perception, and yet it can have expression in verbal contexts.

Whether or not I have any way to express it, on the other hand—to make it apparent as a strength at all—is incredibly context-specific.  That’s happened twice—in scholar bowl—where in my first student vs. faculty rounds in middle school, I was so fast at pulling answers about subjects I’d never studied out of thin air and hitting a buzzer that it had my teachers scrambling to discover how I was cheating.  And in stage management—what I now do for a living.

People are still surprised to hear that calling a show—that is, the act of reciting from a script all the light, sound, and entrance cues in a show so that they happen exactly when they should—is my favorite part, and the easiest part to me.  I was confused the first time I was asked in an interview, with some skepticism, whether I like calling shows.

I love it.  Nothing else feels so mentally close to flight.

And I was just good at those things, the first time.  I got even better with practice, but they were things that just intuitively clicked the first time I did them.  But I was fairly old before I had any way to demonstrate this as a pattern of skill, and even older before I had the language or pattern of experience to recognize and identify it for what it is.

The counterintuitive part is that even though it’s a strength, even though it’s an enhanced perception compared to what most people experience…it can also be disabling.  It’s intimately involved somehow with why speech and initialization of movement are difficult.  It’s related to why participating in group conversation is hard, because other people are using an entirely different set of cues to direct and understand the flow of conversation.

It’s a major source of anxiety, because this thing that my whole sense of the world is patterned on, is undermined and disrupted by most other people most of the time.  It’s part of what makes transitions so hard to navigate for the same reason.

It’s the very same trait that can be a strength or a disability depending on the context in which it occurs, and sometimes even both at once.  It’s the same trait that makes speech and gross motor planning hard, as makes me able to run a complicated show practically as easily as breathing, depending on my environment, the expectations of people around me, and the tools I have access to.

People who have a recognized savant ability or “splinter” skill are only the ones who have a readily available medium for it.

What’s most alarming to me is how dependent on access to technology and educational resources my chances of even getting to identify and make use of this have been.

If I hadn’t had the language capability I do, if I hadn’t been considered a gifted student, if my chances of going to college were undermined instead of supported, if I hadn’t had access to theatrical training—all of which could so easily have happened if I’d remained non-speaking.  Or if I’d even been diagnosed correctly.  I would likely have been denied access to the very resources that are most necessary to expression of my most central abilities, based only on prejudices about what my inabilities meant.  (Which weren’t not there anyway, they were just not acknowledged or presumed to be willful on my part.)

There is no reason why acknowledging disabilities, deficits, and need for supports should mean refusing to recognize strengths, or why recognizing strengths should mean refusing to cope with deficits.  Humans don’t have only intrinsic strengths or savant skills or disabilities.  Not only are none of those things mutually exclusive…they can actually be intimately related.

It positively frightens me to think about how many kids could be in a situation in which their strengths are denied because they don’t fit a limited stereotype of what “savant” abilities look like.  Where their families and teachers have been taught to see only grave deficits as consequences of autism.  Who haven’t been given any way to know or communicate what tools they need or what kind of environment would best allow them access to their abilities, which may not resemble what most people think abilities look like at all.

How many are being written off as being without abilities, even without awareness, because they don’t have the medium they need for expression?

When I ask “What are this kid’s strengths?” the answer may require looking for something that is also at the root of their disabilities.

I want to be totally clear:  I’m not saying that all autistic kids have some hidden, magical savant skill, but that people are in danger of having their abilities and competencies ignored when they don’t look like what people think savant skills look like, and believe that a limited repertoire of savant skills are the only true abilities that an autistic person could have.

[Image is of a Clear-Com headset sitting on top of a stage manager's calling script, with lots of cues and timing notes written in.]

Wednesday, October 29, 2014

Small things matter: hunger, meltdowns, and coping skills

By Aiyana Bailin

Let me preface this by saying that I don't have a formal ASD diagnosis (just various mental illness labels), and am unsure whether or not I'd qualify for one. What I can say is that, throughout my life, I have had various small but very significant gaps in what is considered "normal" functioning for someone of my age group. Many of them are common among autistic people. Some of them were easily overcome or managed, others not so much.

I want to talk here about one that caused me quite a bit of grief before I learned how to cope with it, but which was actually quite easily accommodated once I understood it.

I'll begin by noting that I struggle with eating sometimes. My appetite varies wildly according to numerous factors from stress level to time of the month, and I can easily forget to eat altogether for the better part of a day, or more. I've been known to faint before realizing I was hungry.

I was lucky to grow up with a mother who put food in front of me three times a day, so I ate quite regularly as a child. The downside was that, when I became a teenager and began spending more time out of the house, I didn't yet have the ability to notice for myself when I needed to eat or take appropriate steps to acquire food before I collapsed.

And here we run into the real problem, which is that sometimes, when I haven't eaten recently enough, and especially in the morning before my first meal, I cannot function. I don't mean I am grumpy or groggy or poor at making decisions. I mean that, intellectually and emotionally, I revert to essentially the same level as a tired toddler. I can't make the simplest choices. I burst into tears at minor frustrations and then can't stop crying. I'm very nearly helpless, particularly if anyone asks me to do or think about anything that I can't do on autopilot.

My mother and I really discovered this shortcoming on my college tour trip. We had stayed overnight at a hostel, and in the morning we dressed and set out to find a place to eat breakfast. My mother asked me what I wanted. I wasn't sure. She questioned further, trying to get a better idea or a decision. I became mildly hysterical. I have a vague memory of standing on a sidewalk in tears, wailing "I don't know! I don't know!" over and over while my mother looked on in shock and confusion at her college-bound, nearly-adult daughter going entirely to pieces over the question "what do you want for breakfast?" I was completely out of control in what I now recognize as a meltdown.

Somehow, Mom got me calmed down and into a cafe, and I managed to order something. Within minutes of starting to eat, it felt like I returned to awareness after having been only dimly conscious of myself. I still felt shaky, but I was suddenly rational again, able to control my emotions, to think, to focus. The feeling of panic and overwhelm was gone.

"I think," I said, eventually, "it may be best if, in the future, you don't ask me any questions until I've had something to eat. You can choose for me next time, ok?"

"That sounds like a very good idea," said my mother, who was a bit emotionally exhausted herself by the ordeal.

It wasn't quite as easy as that. She's forgotten this rule sometimes, and I'm usually in no condition to remind her of it when that happens. Sometimes she doesn't know I haven't eaten recently until I melt down over something minor and she thinks to ask. Sometimes there are questions she needs an answer to before breakfast. Often, I'm fine up to a point-- I can answer certain questions better than others, or I wake up energized and am ok for a while before the need to eat sets in. Then it takes everyone, myself included, by total surprise when I suddenly break down.

I've become more adept at managing this over the years. I make breakfast plans the night before. I warn lovers and traveling companions about the hazards of questioning me before I've eaten or at least drunk something with calories in it. If we plan to dine out for breakfast (not a common occurrence), I eat a granola bar before leaving home.

Over the years, my primary tactic has become a lot simpler. Now there is always some kind of snack food on my bedside table. Usually, I admit, something with a fair bit of sugar in it-- a single-serve packet of cookies, for example, or a candy bar-- something I'm not likely to turn down even if I don't feel the least bit hungry. So I get some sugar into my bloodstream before I even get out of bed, and I find it helps me be more alert and functional in general (I've been tested for hypoglycemia, by the way, and I don't have it-- or any number of other metabolic abnormalities that have been suggested. Ultimately, though, in this case it hasn't been a diagnosis that made the difference, just finding a coping strategy). I'm sure plenty of people, including my mother, would disagree with me from a nutritional standpoint, but it works for me. And some days, it truly makes a world of difference.

Small things matter. Individualized coping strategies matter. Identifying needs and triggers can mean the difference between a horrible day for everyone and the complete opposite. It does no good to blame someone for going to pieces when they can't handle something, and it doesn't really matter why they can't handle it, either-- you just have to accept that they can't and work from there. Abilities can vary a lot with context. This story is the very simplified version-- lots of ups, downs, and variations actually occurred before this all ran smoothly. And my coping strategies still fail me at times, particularly if something interrupts my regular routine. But such failures happen less often now than they used to. Years of practice helped. Hang in there. Keep trying things until you find what works for you.

Sunday, August 10, 2014

The Unrecovered (response to the New York Times's "The Kids Who Beat Autism")

I have had a lot of reaction in the past couple of days to that Times Magazine article concerning “The Kids Who Beat Autism.”  Here’s about all I have left.

The parents, the teachers, the therapists and researchers without a clue who are celebrating “recovery” because in their heads they’re defining autism as a fixed set of permanent inabilities—

-Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.

-Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.

-Are not the developmentally disabled women who suffer a sexual abuse rate of over 90%, no thanks to the compliance training that teaches that allowing others to control our bodies is desirable behavior.

-Are not the kids pulling themselves through school without disability accommodations.

-Are not the kids getting their supports pulled out from under them when they lose a diagnosis.

-Are not the kids getting chided and belittled because their challenges and oddity are now seen as choices of defiance or misbehavior.

-Are not the people being lied to about who they are.

-Are not the people who are going to wake up one day 20 years from now with no idea who they are or how they got there.

-Are not the people who will spend a year and a half having a meltdown with no idea of what’s happening or why.

-Are not the kids being taught that accepting yourself as you really are and as you really work, would be the worst possible thing.

-Or that the “best outcome” possible for you is to spend the rest of your life pretending to be something you’re not.

-Are not the people who are going to have to re-learn where they belong in space and time and how to live there.

-They will not be the people giving these kids a community and a support system years from now.  They will not be the ones who know what to do when they start having breakdowns and burnouts.
They will not be the ones supporting their kids in learning self-acceptance when all their passing skills fail because they are actually incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this article, for joy and authenticity.  This article could’ve come with a spoiler alert; we know the end of this story.  We know it many times over.

It’s just not that these kids live out their lives as non-autistic people.

(Crossposted from Chavisory's Notebook.)

Monday, July 28, 2014

I am autistic

We Are Like Your Child is pleased to host a guest post from Heather E. Johnson today!  Heather blogs at And here are my words...

I am autistic
okay, that may be a “duH” thing to write as a headline but it seems many of my Facebook friends fail to remember that. I don’t know how. I exhibit many of the symptoms. It seems to be that it is because I type well.

Well, I don’t recall that being listed as a thing when the changes were being made.
Here is the DSM-V diagnostic criteria on severity and levels. I know I should be shot for using an Autism Speaks source but they were the top search engine return that fit my need!

Okay, so based on this new criteria, here is how I was recently re-labeled. (recently as in days ago). I use excerpts from the cited website above and from my doctor’s notes on his findings. (I always get a page by page copy of my medical records to keep on hand. They have come in handy, in particular for cases such as this evaluation.

“Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history:

Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.”

From my doctor’s notes: ” Ms. Johnson shows deficits in social-emotional reciprocity. She fails in social approach (based on documented medical records from birth to present day) and failure of back and forth conversation. She often stares in a state that makes her look like she’s daydreaming while someone is talking with her, including this physician during our interviews. She reports that she “zones out” when trying to converse with others after her interest in what that person has to say wanes. Ms. Johnson does seem to have improved in recent years in her desire to initiate and respond to social interactions but has not been able to follow through except in online contexts.”

”Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.”

From my doctor’s notes: “Ms. Johnson has deficits noted in her medical records which were provided to this physician and covered from birth to present day. She does not consistently and successfully use nonverbal communicative behaviors in social interaction. As observed by this physician, she presents with a total lack of facial expressions at times and does not seem to understand nonverbal communications used in many contexts. She probably succeeds more in her online social interactions because nonverbal communication is not used in that form. She makes minimal eye contact with others, as observed by this physician, and often uses  a coping skill of looking at a person’s nose rather than their eyes.”

“Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.”

From my doctor’s notes: “Ms. Johnson is an adult at present and some of the observations come from her previous medical records and some from this physician’s personal observation. Ms. Johnson states she can only recall two incidents where she initiated “making friends” with another person. A first grade teacher provided a report to a military physician in 1984 that Ms. Johnson, as a seven year old, “does not seem to play well with others and prefers to play alone or alongside her classmates. This is not developmentally where she should be.” Ms. Johnson stated that she lost contact with her sister for 10 years and only realized she missed this sister when she came into contact with her again online last year. Ms. Johnson further stated that she has always felt “if my friends were out of sight, they were out of mind” and she does not actively seek to stay engage in her relationships. She waits for her friends to call her or message her on Facebook, a social media website. The only exception seems to be her biological father.”

“Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history
Stereotyped or repetitive motor movements, use of objects, or speech” and
“Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior"

From my doctor’s notes: “Ms. Johnson does present with repetitive motor movements also known as “stimming”. She moves her hands in a manner that could be described as “flapping” or “trying to clap with one hand only” while waving the arms around. Ms. Johnson does carry a co-occuring diagnosis of Obsessive Compulsive Disorder and therefore also shows repetitive patterns of behavior, interests and activities as a part of that condition. It is unclear which diagnosis is the cause of that behavior at present. Nor is it clear at present which disorder causes the inflexible adherence to routines and ritualized patterns. For instance, she does things so that they are done an even number of times, often repeating phrases so that a phrase is said an even number of times. She once refused to sit in an office when it had three chairs instead of an even number of chairs.“

"Highly restricted, fixated interests that are abnormal in intensity or focus”

From my doctor’s notes: “Ms. Johnson has a varied amount of interests and states that she “collects” interests to obsess about. However, this physician has noted that her interests are abnormal in intensity and focus both from observation and in documented history. Ms. Johnson reports that she “cycles” through her interests. She will spend days or weeks focused on one interest and then move to the next and so on until she is back into the original interest. This method of cycling is part of a ritualized behavior as she starts with the same interest and moves to the next interest in the same pattern each time.”

“Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment”

From my doctor’s notes: “Ms. Johnson has both observed and documented in  history of hyper and hyporeactivity to various sensory input. She has exhibited a high pain tolerance in documented history. There is documentation that she has failed to wear weather-appropriate clothing when allowed to dress herself as a child. She reports that presently she often leaves the house without a coat even during winter months. Again, with her OCD diagnosis, it is difficult to distinguish the behaviors between autism and the OCD. She reports that she routinely spends time sniffing the air while taking a tour of her home, to check for smells of something burning. She often touches the walls as well to make sure they are not hot. Ms. Johnson does exhibit an unusual fascination with visual stimulation. She has documented history of poor visualization skills and this may account for her fascination.”

Severity is based on social communication impairments and restricted, repetitive patterns of behavior 

“Level 3Requiring very substantial support"

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others

Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.”

From my doctor’s notes: “While Ms. Johnson is able to verbalize her communication, it does appear to come at a cost to her.  As the first hour-long interview came to a close, Ms. Johnson appeared more tired and less aware of surroundings than when first started. She was confused and was unable to navigate her way back to the exit on her own and required assistance in finding her way. Ms. Johnson reported on the second interview that she found it hard to “function at all” after the first interview was conducted and she returned home. When functioning does become difficult, she prefers to go to her bed and retreat from the world around her. Ms. Johnson receives daily care from up to three caretakers in a given day. It is this physician’s belief that if Ms. Johnson did not receive such substantial support as she does from caretakers, friends and family members, she would  ultimately be institutionalized or at the minimal, in an assisted living facility or group home. She is unable to act on a prescribed budget and make sure her expenses are paid in a timely fashion, she is unable to remember to eat on her own, or to take in liquids. She is unable to leave the house on her own much of the time, requiring an escort. Ms. Johnson has many physical, biological, and neurological conditions that contribute to her depressed functional abilities; however, it is this physician’s opinion, based on observation, interviews with patient and others, documented history, documented testing and results, that Ms. Johnson should carry the diagnosis of Autism Spectrum Disorder, specifically, Level 3.”

So, what does this mean? Well, it means, dear concerned parent of a child with autism, I am not “high functioning autistic”. Not that I find it to be an insult, mind you. There’s nothing wrong with being labeled as such, despite what some of these parents seem to think. It means I am more like your ‘severely autistic’ child than you think. In fact, I bet your child and I carry the same diagnosis.

I want to take this moment to also point out how unfair you are to your child. I am now 37 years old. How old is your child? Five? Three? And you want to compare his current functioning level to mine?? I have had YEARS of maturing and growing and learning.. decades! Our arc of maturity may be longer than a neurotypical person’s but that by no means should suggest we ever STOP.

I work with my sons’ therapist all the time. When he notices we are attempting to teach one of my son’s a skill that I have yet to acquire, I teach myself first and then my child. Much like a parent who doesn’t “get math” will first try to understand his or her child’s homework assignment and then assist that child with a problem. So, I am always improving. Always adapting. So will your child. Please, though, stop comparing your children to the autistic adults you come across.

Please, stop accusing us of being “high functioning’ as a way to mean that we’re not “as autistic” as your children are. Please, stop believing that even if we are not as severely autistic as your child is, that we do not know some of the things your child experiences or that you cannot learn from us.

Oh, don’t get me wrong. There are some autistic adults that are as “bad” as these parents I’m currently talking to. It’s okay to say that parenting a child on the spectrum is HARD. Why? Because parenting a child, period, is hard. I don’t know any different though as both my sons have a form of autism. However, I recently adopted a 17 year old male who does not have autism. And in the 3 weeks he has lived in our home, he has become a member of this family, and I treat him like I do any of my sons. Just because he’s neurotypical doesn’t mean he’s any harder to deal with than my other children. I love them equally. :D

Seriously tho, folks. Stop it. Just stop it. Stop assuming you know my severity level because I can type 108 wpm, on average, sustained over a five minute timed test.

As my father pointed out yesterday… I may have much knowledge gained from memorizing books but it doesn’t mean I can apply it effectively. Just because I can type doesn’t mean I can talk. Just because I can type, doesn’t mean I don’t also wear adults diapers (because I do). Just because I can type, doesn’t mean I’m able to, on my own, pay my bills on the day they due (not because of lack of money but because of lack of thought). Just because I can type, doesn’t mean I can get organized and clean my house on my own. Just because I can type, doesn’t mean I don’t have executive function issues. Just because I can type, doesn’t mean that my autism is any less pervasive than your child’s autism. Just because I can type, doesn’t mean I don’t have challenges that come with autism. I have overcome many of them and some I overcome daily in order to interact with you. Why? Because I do care about your children. I care about my own children. I want their world to be a more accepting and less judgmental place when they grow up and enter it.