Autism: Functioning Labels Don’t Work — What Does?

Autistic people have been saying for a while that we don’t like functioning labels. There’s been an ocean of electrons used up in blog posts, podcasts, Twitter threads, and Facebook rants about it. I’m not going to recreate the wheel.

But folks who like using functioning labels (who are mostly parents and autism activists but also a minority of autistic people) have one good point. Not every autistic person is the same and the experiences of, for instance, a nonverbal autistic person and a hyper-verbal autistic person will vary widely.

The problem is that those are often the same person. I, for instance, can be both hyper-verbal and nonverbal depending on the situation and my current mental load.

(Mental load is a me-term, by the way. I use it to refer to how much my brain is trying to do at any given moment. High mental load means my brain has a good chance of running out of processing power and ‘BSOD-ing’ (blue screen of death-ing). That moment where your brain just freezes up and you can’t think, even to answer a very simple question like ‘what’s for dinner?’)

Becoming nonverbal seems to be one of the ways my brain copes with high mental load. Processing power is re-routed from the verbal parts of my brain to other, more critical areas. Or at least, that’s the metaphor that best describes what it feels like.

That’s not the only thing that can have me ‘going nonverbal’. Hopefully, it gives you some idea of what I’m dealing with and why you can’t assume I’m ‘high functioning’ because I manage a single conversation well. Or have an active Twitter account.

Do We Need Labels at All?

In spite of how autistic people’s functioning is much more varied than the terms ‘high’ and ‘low’ functioning make it seem, it really would be helpful to have a way to discuss the needs of Autistic person A, how they compare to the needs of autistic person B. Because if you can do that, you can say ‘this therapy/support/treatment will be most helpful to people who experience autism like Autistic person A, but is not very helpful to people like autistic person B.’ And getting appropriate help will be a lot easier.

Amazingly – there is a way to discuss that. A way that is much better than the binary ‘high’ and ‘low’ functioning.

Even more amazingly, it’s part of the official diagnostic criteria. As in, this is what doctors and researchers actually use to differentiate autistic people’s needs. Or should. Because despite this ACTUALLY BEING IN THE DSM, we still see research papers about ‘high functioning autistics…’

Sigh.

Now, the DSM isn’t great. In fact, I have a whole rant saved about how not-great the DSM criteria for autism spectrum disorder are.

But this is something the DSM got right. Or at least, closer to right than anyone else has managed.

Before we get into that though, there is something I want to get off my chest.

There is no such fucking thing as ‘autism level 1’. People talking about ‘levels’ of autism are distorting the DSM’s supporting needs system and don’t know what the fuck they are talking about. ANYONE who is using ‘levels’ of autism needs to sit the fuck down with someone who ACTUALLY FUCKING UNDERSTANDS AUTISM AND THE DSM. Learn how they are taking a really decent idea and fucking it up for everyone.

Ahem.

With that out of the way… let’s take a look at the best system I’ve seen for classifying different autistic experiences and the needs of autistic people. Even if it is from the fucking DSM.

Support Needs Levels

For folks who want to check it out, the not very readable official chart from the DSM is down at the bottom of the page. (The ideas are decent, the presentation not so much.)

But here’s the basic idea:

This system focuses on support needs.

Support needs are better for individuals than attempting to establish ‘functioning’ levels. 

How much support do I need to do the things I want or need to do in my daily life? Well, I live in a small town with next to now public transportation. So I need to either be able to drive or a way to get around town. If I lived in NYC, I wouldn’t need support to get around, because buses and subways are a thing there. But someone else who can drive fine but can’t understand subway maps might need support in the city, where I don’t.

That’s support needs, in general.

Now let’s talk about autistic support needs.

Autism is officially considered to cause problems in two main areas: Social communication and restrictive, repetitive behaviors. As anyone who actually has autism knows, these categories are entirely inadequate. But they are still better than anything else going, so we work with it.

This is why I say there is no such thing as ‘autism level 1’. It’s ‘level 1 support needs in…’ In what? Which category? Or both?

Severity levels run from level 1 (least severe) to level 3 (most severe).

Now, remember the goal of support needs is to identify what support we need to be able to live our lives. Someone who has support and doesn’t seem to have problems still has support needs. They may look like they don’t, but a duck also looks like it’s just putzing along while its legs are pumping a mile a minute under the water. Just because you can’t see it doesn’t mean it’s not there.

Now, most folks who can pull off the duck routine are going to be in a level 1 situation. If you need significant supports, those supports are likely to be obvious and/or are likely to be not fully adequate.

With me so far?

Okay, last point and the most important one – remember my example about driving and NYC? Support needs can be situational. There was a time a few years ago when my Social communication would likely have rated support needs 3. Or high on level 2. I carried a tablet or phone with me everywhere to type because very often I couldn’t talk. I didn’t interact with strangers unless I absolutely had to and rarely interacted with family and friends.

It turned out, I had a B12 deficiency. A pretty massive one. Plus postpartum depression and a bunch of other stuff going on. When I got the other problems treated, my ability to communicate and handle social stuff improved immensely. These days I’m level 1 social communication.

That’s an internal situation affecting support needs. But there can be external situations too. If I tried to go back to school, for instance, I’d likely end up back at level 2 within a few weeks. And if I managed to keep going, level 3 by the end of the semester. The added mental load (from constant socializing, from needing to adhere to a schedule that didn’t suit my life and needs, from the actual school work) would result in severe burnout and ‘regression’ within a month.

I do as well as I do because I have had significant help in structuring my life to that end.

Using the DSM Support Needs Levels

The support needs severity levels run from level 1 (least bad) to level 3 (most bad). For reasons I don’t think HAVE a reasonable explanation, everything that isn’t social stuff, they through into restrictive, repetitive behaviors. So sensory issues (for instance) count in the restrictive, repetitive area. 

Often, only one support needs category will apply. For instance, I frequently see questions about autistic people and our need for routines. That’s a restricted and repetitive behavior question. A person’s communication needs won’t impact their need for routine. It may impact what their routine is, but that is another matter.

Now, not many folks know about support needs levels. But with how common that ‘level 1, 2, 3 autism’ thing has gotten, most folks will probably understand. “I’m autistic/my kid is autistic with level 3 social needs, how can I/they find a job?”

See how by phrasing it this way, the person looking for help has made clear what their situation is without making assumptions about anyone else’s situation? And they will likely get more useful help that if they just said ‘low functioning’. Answers will focus on the social aspects of jobs like managing interviews or finding a job with minimal social interaction. Instead of “try for x, y, or z jobs. They are very repetitive and that works better for many autistic people!” This answer may be correct, but it isn’t as likely to be helpful as a more socially-focused answer.

This went a lot longer than I’d planned, but I hope folks found it helpful. As promised here is the official chart, and you can find the full diagnostic criteria here.

Table 1 Severity levels for autism spectrum disorder

Severity level Social communication Restricted, repetitive behaviors
Level 3 “Requiring 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. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches. 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.
Level 2 “Requiring substantial support” Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication. Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1 “Requiring support” Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful. Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

 

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My Autistic Sexuality, Part 1

I’ve never seen anything, anywhere, about being sexual as an autistic person. And I’ve noticed (as a frequent reader of romances and sex blogs) that the way other folks talk about sex is very very different from my needs and experiences. My sexuality is different from anything I’ve heard of. And it’s time we start talking about autistic sexuality.

MY Autistic Sexuality

This is my autistic sexuality, okay? Not necessarily anyone else’s. A lot of it relates to tactile hypersensitivity. So autistic folks who are mainly hypersensitive in, say, their hearing or smell, and hyposensitive to touch will have very different experiences. But when I mentioned writing this earlier today to a friend who is also autistic and hypersensitive, we shared a ‘Hell yes!’ moment. So it’s not JUST me.

I originally started writing this for my partners. Because talking about sex is still really hard for me (partly for reasons covered below). Friday, I was reminded of my old (and sort-of-ongoing) desire to get into sex blogging. How I wanted to talk about my sexuality in hopes of connecting with others who shared it and sparing folks the years of ‘what-the-fuck-is-wrong-with-me’ that I went through figuring all this out.

I can’t write about sex on a regular basis (again, partly for reasons below). But I could take this writing, that I need to do anyway, and share it.

Part one is about arousal and the before-we-get-to-sex stuff (mostly). Part 2, which I will hopefully be able to write in time for next week’s post, will be the actual sex stuff.

So here you go.

Part 1: My Autistic Arousal (mostly)

  1. I live in near-constant dissociation. This is how I handle my hypersensitivity. But it often makes me oblivious to stuff going on in my body. Stuff like arousal. For whatever reason, my mind interprets the physical signs of arousal as itchiness. If you see me scratching my crotch, I am likely aroused and either unaware of it or don’t feel I can do anything about it.
    My arousal almost always starts in my body. But it’s started by my brain. Words. Okay, touch never makes me aroused. I think it’s because of how hard I disassociate but I’m not sure. Pictures and books are the most common instigators. Sometimes my own writing or thoughts. But if I’m not aware of being aroused and I don’t feel aroused? I just get itchy. It takes an active effort for me to release the disassociation and feel the arousal.
    Maybe. Or it may be that I don’t have instigators for arousal as-such, and it’s just that I’m interested in pictures/books/etc when well…
  2. I seem to get aroused on a schedule, probably hormone related. About every two weeks, I get aroused, and it gets stronger over time unless I do something about it. If I don’t do anything it seems to fade after 3 to 5 days.
  3. Being aroused and being in dissociation usually triggers anxiety. It can lead to panic attacks but…
  4. If the anxiety goes long enough, usually the arousal ‘gets bad’. I think this is hitting some residual trauma stuff, but it might be a hypersensitivity thing — over stimulation. Or both combined. I don’t have the right words to describe what it feels like in my head. But any skin-to-skin contact starts to feel bad in a very specific way. Erotic contact is worse. And my arousal starts to feel bad in that way — like, if I make the effort to drop the dissociation and let myself feel the arousal, it feels bad in this way.
    Whether or not this problem starts from trauma, it will definitely pull up trauma stuff if it goes on long enough.
  5. If I can dissociate myself heavily enough and get busy doing something that distracts me, the badness will usually go away. Sometimes it just stays til the arousal goes away. Which (see above) can take a while.
  6. Sometimes things can start to ‘go bad’ during sexual activity. Still haven’t fully figured this out, but overthinking is definitely a sign it’s coming/trigger. Usually can’t come back from this but recently Michael has been able to pull me back from the ‘bad’ so we can continue. I don’t know how she did it.
  7. If I realize it’s starting to go bad before it does, sometimes pain helps bring me back.
  8. I can’t stop being aroused except for positive sexual activity. Once the arousal hits, especially the hormone-induced arousal, there’s nothing I can do but ride it out. No cold shower or equivalent that can make me stop being aroused. Doing sex will stop the arousal, at least temporarily. The better the sex, the longer the arousal stops. Sometimes it’ll be just a few hours, especially if things ‘go bad’. If I’m lucky, it’ll be good enough to shut down the arousal until the hormone period passes.
  9. If I’m lucky, because while I do like sex as a thing, it gets REALLY FUCKING ANNOYING to have my body demanding sex whether I’m healthy enough, in the mood, have time, have privacy, etc etc. and if I don’t do something my mind will punish me for it.
  10. Like, the first time each round, I’m usually excited and into. After the second or third time, I’m ANNOYED and want it to be over so I can get on with my life.
  11.  I’ve seen a couple of places selling tiny dildos, like fit-inside-you-and-disappear things. And that’s like my holy grail of dildos, because when the itching starts, I could put it in and it would give me just enough stimulation to pulling me out of dissociation without overwhelming me. That would keep the anxiety from kicking in (see point 4), hopefully long enough for good sexy times to happen.
    1.  Just as a random, completely  irrelevant note, my birthday is coming up. 😉

So yeah, that’s it for now. Hopefully I can follow up next week with the sex part of my autistic sexuality.

What Is Etiquette? — Autistic Guide to Etiquette

As promised, I’m starting a side project writing about etiquette for my fellow autistic folks. Before I get into it, I want to thank Judy (An Autism Observer) for pointing out two other etiquette guides by-autistic-people-for-autistic-people. Real Social Skills is no longer updating, but there is some good stuff in the archives. Improve Your Social Skills by Dan Wendler has solid advice on navigating different social situations, even if he really needs to hire a new web designer.

What I’m doing here will be rather different from what you find on either of those sites — or most etiquette guides. Instead of talking about what to do in different social situations, I am going to talk about the hows and whys of etiquette. When we’re done, I want you to understand why of most social situations.


What Is Etiquette?

To start us off, we’re going to take a few minutes to talk about what etiquette is. I’m willing to bet you got a lot of ‘look people in the eye’ and ‘don’t interrupt’ and other rules of etiquette that drilled into you. But I doubt anyone ever sat down and explained what etiquette is.

Truth is, most of the people trying to teach you ‘how to behave’ didn’t understand either. They learned etiquette the way they learned to walk. They never needed to stop and think, “Okay, I need to maintain my balance on one foot while moving the other foot forward. So tighten this muscle and relax these muscles and make sure I shift my center of gravity /this/ way…”

They don’t understand how they walk. They don’t understand how gravity affects walking. They just do it.

And they don’t understand how they socialize or the etiquette rules they follow.

Okay, I’m rambling.

Etiquette Is Social Custom

Etiquette is basically the customary way people interact. If you are following etiquette, you are behaving in that customary way. If you don’t behave in that customary way, you violate etiquette.

Why does etiquette matter?

Etiquette gives everyone a ‘playbook’ for social interaction. Everyone following the same etiquette is like a group of people playing baseball together. You can only play baseball if everyone uses the same rules. If someone runs out and yells “Fore!” the game screeches to a halt. No one else on the field knows what is going on and how to respond to it.

(Yes, I grew up in a sports family. How could you tell?)

Etiquette is different everywhere

Because etiquette is simply customary behavior, it is different everywhere. And it changes over time. What is polite today would have been rude 50 years ago. What is polite in the US is rude in the UK or Japan or Nigeria.

So I’m going to be talking about etiquette in the US. But even in the US it varies.

When I was a kid, I read the book ‘Shiloh.’ I noticed that, like in a few other books I had read, the main character called his parents ‘Sir’ and ‘Ma’am’. I figured this must have been another one of those rules everyone else knew and I didn’t and resolved to start calling my parents ‘Sir’ and ‘Ma’am’. That resolve lasted less than half a day. The first time I called my mom ‘Ma’am’ I got in trouble for ‘mocking’ her.

I’m sure you’ve had your own introduction to the idea that what’s polite in one place is rude in another.

Etiquette experts can lay down “rules” for the socially inept. However, these “rules” change all the time as culture and society change.

Cultures create customs.

This includes etiquette. According to pop culture, propriety was the key to etiquette in Victorian England. Anything could be done as long as it was done properly. A similar concept from Japan is on or face. In the shogunates of Japan, all interactions were built around not damaging each other’s face. In the US today, the key concept is equality.

The idea that everyone is equal is the foundation of day-to-day etiquette. This is why in the movie Titanic we liked Molly Brown, who doesn’t look down on Jack. Instead, she treats him as her equal, helping without condescending. Unfortunately (in my opinion), this focus on equality has evolved into a need for same-ness. Drawing attention to another person’s differences is among the heights of rudeness. A custom many immigrants and international visitors are baffled by.

But how does ‘equality’ become a set of customary behaviors?

By combining respect and friendliness.

People are only both respectful and friendly with those they see as equals. Respect is offered to an equal or a superior. It isn’t offered to an inferior. Friendliness is offered to an equal or an inferior. Friendliness implies closeness, a connection with the other person. Offering friendliness to a superior is seen as rude because you are presuming a closeness to someone who is ‘above’ you..

So putting respect and friendliness together implies equality.

*For the not-sports inclined, golfers yell “Fore!” when the hit the ball to warn anyone ahead of them on the course to get out of the way. Why “Fore”? I have no idea.


Okay, that’s it for now. As I said, this is a side project so it’ll update irregularly. See you next time!

The Spoony Rainbow

A couple weeks ago, Dr. Arlene Taylor shared an infographic that I’ve come to think of as The Spoony Rainbow. Dr. Taylor called it ‘Escalation Curve Dynamics’, which is a very descriptive title, but not at all catchy and way too many syllables for me when I’m having a bad day. So I call it the Spoony Rainbow.

Dr. Taylor presented the Spoony Rainbow as being for autism, but like Spoon Theory was created to describe lupus, but had much wider application, the Spoony Rainbow also has applications way beyond Dr. Taylor’s original goal.

Okay, before I go any further, here is

the Spoony Rainbow.

(For some reason WordPress isn’t letting me set a description for this image. My apologies to folks using screen readers. Ten rectangular boxes in paired colors, starting in blue at the bottom, then green, yellow, orange, and red at the top. In the left box of each pair a description of how an autistic person will be acting at this level, in the right box of each pair an assessment of what this means in terms of how they are doing and if they need help/how much help they need. I don’t have the spoons to type out the exact words. My re-phrasing is below.)

You get it right? It’s a rainbow for spoony people. Each color is a different level of able-to-cope-ness. A different measure of ‘how many spoons do I have left?’ ranging from ‘plenty’ all the way to ‘NEGATIVE SPOONS! DANGER WILL ROBINSON!’ But better — it’s not just a descriptive tool for spoony folks. It’s a guide for our friends, family, and caregivers.

Blue/Level 1: All is good, don’t worry!
Green/Level 2: Working on getting back to blue, help appreciated.
Yellow/Level 3: Having some problems here, help me get back down please!
Orange/Level 4: DO NOT ADD ANYTHING TO MY PLATE DON’T YOU FUCKING ADD ANYTHING TO MY PLATE. A LITTLE HELP HERE?
Red/Level 5: … [yeah, you gotta fix this, I’ve checked out for the day]

Here’s Dr. Taylor’s twitter thread exploring and explaining how what other people do impacts what level autistic people are at and knowingly doing stuff to raise the level is just plain shitty.

I meant to say more about this, but spoons are a thing (I’ve been bouncing between yellow and orange with occasional bounces to red for the past week+), and I’m not sure more really needs to be said? Like the best infographics, it’s pretty self explanatory.

Though if someone can leave a proper description in the comments for folks using screen readers, that would be awesome?

New Project: Autistic Guide to Etiquette

I know better. I really do.

But, but, but, but…

Honestly, I haven’t felt really ‘grabbed’ by a nonfiction topic in years. This is the same feeling that drove me to start Polyamory on Purpose in the first place. There is this thing that no one is talking about and should be and why is there nothing on this!?!?!

Talking with some friend-type people on the Fediverse led to the realization that there are no etiquette guides for autistic people. (Or if there are, I haven’t seen or heard any hint of it?)

Like, for all the talk about how bad autistic people socialize, you’d think someone would have written an etiquette guide or two for us?

Except that I wouldn’t trust an allistic person to write a useful guide for autistic people.

So… I have a new project. Sort of. I’m still figuring out how to handle this.

Starting in January I’ll be blogging… maybe on a schedule? I mean, that would be nice, if I could have a schedule? Right? (I mentioned I’m still figuring this out, yes?)

Anyway, I’ll be blogging on how-to-etiquette for autistic folks. As best I can.

When I’ve got enough for a short book, I’ll put it all together in one file and throw it up on Amazon and D2D for the folks who prefer the convenience of a book and/or want to make sure I get some payment for my work.

This is, absolutely, going to be a side project for the foreseeable future. My writing plate is full plus some. But while I’ve gotten a lot better at saying ‘no’ to other people, I still kinda suck at saying ‘no’ to myself.

So I’m doing this. And… we’ll see how it goes.

Wish me luck.

Special Interests: Autistic Acceptance Month Day 5

Personal opinion: There is no difference between autistic special interests and allistic special interests. Autistic folks just one-track more so we get deeper into our special interests than the rest of you distractable folks 😉

Anyway, some of my special interests:

Polyamory (If you know me, this one is obvious.)

Polyamory on Purpose

Autism (New-ish, in the last year)

A rainbow infinity sign, popular symbol for autism among autistic people.

Languages (Including linguistics and conlangs)

A word cloud made of "why" in several dozen languages.
by Maierstrahl

People (Psychology, Sociology, Archeology, Anthropology)

(Yeah, I couldn’t find an image I liked)

Reactions to Coming Out: Autistic Acceptance Month day 4

What sticks in my head the most are the number of people who responded to my saying “I am autistic” with “Oh, I knew that.”

Apparently I’ve been surrounding myself with people who are either autistic or have autistic family members without realizing it. And several of them saw the signs and symptoms in me and all, independently, just decided not to say anything.

For the most part, this is perfectly understandable. You don’t randomly walk up to the new member in your synagogue and say, “By the way, are you autistic?”

I’m still a bit miffed at my sister.

Don’t get me wrong, I love my sister, and I understand why she didn’t say anything. My biological family really got into the whole “don’t label people thing.” The problem is that labels aren’t always bad things.

When labels become boxes, that’s bad. But sometimes labels are road maps. Guidebooks.

They show you how to find the information you’ve needed but never knew how to find or even if it existed.

My sister, when I told her I’m autistic, said she realized that almost as soon as she met me. And I nearly screamed at her for the decade of trouble I might have avoided if someone had handled me that road maps just a little bit sooner.

I didn’t. Instead we talked about labels, and how sometimes they are good things. And she admitted that our brother, diagnosed as a child with Asperger’s feels the same way I do.

I admit, I’m a bit more amused than miffed at this point. And a bit envious. She seemed to assume it was obvious to me that I wasn’t neurotypical, so there was no point in saying anything. And she was sort of right. I always knew I wasn’t like the people around me, that something was different about me. For her, the important thing was being supportive and accepting of my differences and treating me like an individual. Because that is what the family she grew up in DID.

It would never occur to her that being different would seem like being broken, being wrong. To her, it was just being different. And god I envy her that.

But still, 10 bloody years, sis. I love you, I thank you for your support, the next time I see you in person I may just strangle you a little, and thinking of you and this right now, I can’t stop smiling.

This post is part of the 30 Days of Autistic Acceptance and Appreciation posting challenge.

Please help spread the word about Autistic Acceptance.

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My Autism Discovery Story: Autistic Acceptance Month Day 3

I remember the special ed classes. I don’t remember why I was in them or what I was being taught. But I remember being pulled from my regular class every day to go to a dark little room and the confusion about why I had to do this when almost no one else did.

I remember being a safety at school, so sixth grade, “monitoring” the empty hallway, and taking a moment when no one was around to spin and spin and spin for the sheer joy of it.

I remember my parents gripping my chin telling me to LOOK THEM IN THE EYE when I talk to them.

I remember walking up to some classmates who were talking and trying to join the conversation, only to get shot down because I violated some unwritten, unspoken rule of socializing.

I remembering family holidays surrounded by aunts, uncles, cousin’s grandparents, where I’d sneak off to someone’s bedroom and borrow a  book from their book shelves and just relax away from the noise happy that my family THERE but not needing to be engaged with them to be comforted by their presence.

I remember the lectures on the way home about how rude I was, how inconsiderate, how people wanted to see me and talk with me and how could they do that if I never took my nose out of a book?

I remember sitting down at our old IIGS apple computer, with my newest book, a catalog of different types of cetaceans, creating a database of all their stats and info. Even then I knew there was something weird–something wrong–that I was more interested in putting that information into a database than reading the detailed descriptions and history of how they were discovered.

I remember twitching my fingers, back and forth, back and forth, and the doctor who medicated me for OCD.

I remember the teacher who realized that I really was trying and instead of berating me for not doing more, sat down with my parents to talk about ADHD.

I remember the doctor who said that everyone is a little ADHD.

I remember the cousins who accepted my eccentricities and the aunts and uncles who said “that’s just the way she is.”

I remember sitting in a psych office, an adult with children of my own, desperately trying to explain to my adoptive parents WHY I can’t “just do” everything that comes so easily for them, from cleaning, to waking up in morning.

I remember opening an article on aspergers, because my nesting partner said he had aspergers, and the more I read the less I’m thinking of my partner and the more I’m thinking “This is me, this is me, this is ME!”

I remember standing in a parking lot with my adoptive mother as she tells me that someone, somewhere, advised her to get me evaluated for autism, but she didn’t.

I remember telling my caseworker, and my other caseworker, and my counselor that I thought I might have autism, and their support.

I remember calling my bio father to ask if autism sometimes made it so you couldn’t speak, because I was going aphasic more and more often and didn’t know what was causing it.

I remember the burnout that took 3 months to recover from. Months where I couldn’t talk more often then not. Months where I slept on the couch because the noise of the fan in the bedroom was sensory overload and showered in the dark (when I showered at all) because the lights are tied to the fan in the bathroom and the shower was sensory overload enough with the fan added to it. Months that convinced me that yes, I am autistic because nothing else explained the burnout and the sensory hell and the constant aphasia and rocking and repetition and, and and…

I remember finding the autistic community and #ActuallyAutistic and two straight weeks of “Wait a minute, all this time I’ve been dealing with that and that’s been autism?” “You mean that’s autism, everyone doesn’t do that?” “If I’d know this was part of autism I’d have realized I was autistic a heck of a lot sooner!”

I remember Rosh haShana in the middle of the burnout, when someone asked how Moses could not talk and then talk, and saying “I’m autistic, sometimes people’s ability to talk changes. I’ll probably be unable to talk by the time I leave here. Then later I’ll be able to talk.”

I remember a little while later trying to say something in the discussion and my stuttering, stumbling barely coherent words.

I remember during a break in the service a synagogue member coming up and saying he knew I was autistic the first time he saw me because of the rocking and inviting me to an autism support group 2 hours away.

I remember telling my bio sister that I realized I’m autistic and nearly screaming when she replies me, “Oh, is this a surprise? I knew it when I met you.”

I remember telling my doctor about how I have trouble with creams and gels because I have sensory issues.

I remember my doctor asking if I am autistic.

I remember asking my doctor for a referral to a shrink so I can get an autism diagnosis.

This was two months ago.

I don’t remember the appoint with the shrink. It hasn’t happened yet.

This post is part of the 30 Days of Autistic Acceptance and Appreciation posting challenge.

Please help spread the word about Autistic Acceptance.

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What I Love about Autism Is….: Autistic Acceptance Month Day 2

This one is a hard one for me, but not for the reasons you’d expect.

I just don’t know enough. I mean, there are things about who I am and the way I am that are clearly the result of autism. And then there is stuff that clearly ISN’T the result of autism. And then there is the majority of stuff that I can’t clearly say whether it is related to autism or NOT.

And then there’s the stuff other people tell me is because of autism but I don’t see it.

Like, my cousin’s talking about football and the NFL draft pick for an hour is normal and not autism, but me talking about linguistics and how words are made and languages evolve for an hour is a “symptom” of autism. Why? Because their passions are common and mine are unusual? I don’t get it…

So… there are things about myself I love.

I love my passions. I love my ability to focus down and lose myself in a project. I love how precise and “nitpicky” I can be. I love how schedules and routines are comforting and empowering and motivating all at the same time.

Are these autistic things? Are they related-to-autism-but-not-directly-caused-by-it things? Are these unrelated-to-autism things?

I mean, given how neurotypicals go on about them and how “weird” they are, I guess they must be related to autism some how. Just don’t ask me how.

This post is part of the 30 Days of Autistic Acceptance and Appreciation posting challenge.

Please help spread the word about Autistic Acceptance.

Did you learn something? Please support my work.

Intro Post: Autistic Acceptance Month

This month I’m going to try for 30 Days of Acceptance and Appreciation.

If I can pull it off, you’ll get a post a day about autism and autistic acceptance.

Like with my Polyamory on Purpose blog series, as I put up each post it will get a link here, so at the end of the month you’ll be able to come here and get a link to all the Autistic Acceptance posts.

Day 2: What I love about being autistic

Day 3: My discovery story

Day 4: Reactions to coming out

I also have a blog post here where other autistic folk and allies can put links to their autistic acceptance posts throughout the month.

Please help spread the word about Autistic Acceptance.