How I get #autistic accommodations (in White America)

Thumbs up, thumbs down

Updateautistsix just raised an excellent point that this situation could be cultural. And I agree. It is cultural. It’s White All-American, not All-American in general. Let me fix that in the text below.

Woo hoo! I just checked my Social Security statement, and it looks like I won’t necessarily be destitute when I get to my 70s. Now, this is assuming there actually IS a U.S. Social Security Administration and money – which is not a safe assumption, these days.

But I’m pretending that all the money they’ve removed from me over the years is going to be there when I need it. Let’s just pretend. For the sake of taking the pressure off.

But enough about that. I want to share a little thing I learned about how to get accommodations for autistic myself, when things are rough with me.

I can get pretty marginal at times — intense pain, off-balance, terrible sense of where I am in space, slow processing and reaction, a sharp temper that explodes out of nowhere, highly sensitive to light and sound and touch.

Times like those, I need to get accommodations and relieve some of the environmental pressures that are making everything worse.

The problem is, I can’t actually ask for them.

When I tell White All-American people I’m having trouble — even with my spouse — they get defensive and frightened. Something about my vulnerability triggers them big-time, and they not only start getting antsy, but they treat me like I’m less intelligent, less with-it, less capable, overall. As though an upward spike in my needs turns their world upside-down.

I’ll spare you my rant about how immature and “snowflake-y” that reaction is. That’s just how things turn out, at times. Especially with White Americans, who seem to have this zealous, almost religious devotion to the myth of self-sufficiency and fierce independence. Don’t get me wrong, I’m White, too, and I am fiercely independent. I’m most comfortable being self-sufficient. But everybody needs a little help, every now and then. And that includes me.

What to do?

Well, I just turn the tables, and rather than being a victim in need of assistance, I position myself as the master of my own situation, who’s managing my life pro-actively and being positive and masterful and ever-so-in-control, so I can “knock it out of the park”. As much as I hate sports analogies when it comes to living my life, and I detest using action verbs to describe a relatively blah, ordinary activity (like saying “jump on a call” for making a phone call)… well, that’s the vernacular of my environment, so I guess I’ll defer to the conventions.

White Americans seem to respond best to pro-active and positive spins on things that make me look like I’m “on top of things”. (I hate that expression, too, by the way — it messes with my literal mind — but I’ll use it nonetheless… vernacular and all.)

Here are some examples that work really well for me:

  • Rather than saying, “Oh, ouch! That sun is so bright and hurts my eyes!”, I put on my sunglasses and strike a pose with my back to the sun.
  • Rather than shrinking away from others when they reach out to touch me, I take the initiative and make contact with them first, before they can get to me.
  • Rather than asking for shorter working hours at the office, I schedule calls first thing in the morning, so I have to take them at home — or I block off time at home to work on things that don’t require me to be in the office — and I organize my daily schedule around my own needs.
  • Rather than dreading being interrupted and startled by someone talking to me when I’m not ready, I get pro-active and address others before they talk to me. If I get ahead of it, I set the stage for the interaction, for the exchange. And I get to set the tone of the conversation, which All-American neurotypicals just love. They love to have something to react to, so I give them that. I “run” the conversation, so they get to be part of a social interaction — and I do it in a way that lets them be successful. Oh, how they love following a leader — so I play that role, and they really respond well. I don’t always get what they’re saying in response to what I say, and our exchanges don’t always make any sense to me at all(!), but at least I can complete the interaction successfully.
  • Rather than telling people about how exhausted I am, how I can’t think straight, and I’m in intense pain, and I just need to collapse in bed in a completely dark window, I tell them I’m prepping for a big day tomorrow, and I’m going to get some extra sleep so I’m at my absolute best. Nobody needs to know how vulnerable and absolutely beset I am by everything. If they do find out, they get way too nervous for my comfort. They don’t know what to do. Ahem… Uh… Ahh… Er… So, I spare us both the awkward situation and spin it in a different direction that makes me look good.

When I actively reframe my vulnerabilities as points to pro-actively manage (with the illusion of CONTROL), and I assertively do just that — manage them — it puts me in a positive light and it also sets me up as the kind of person that others can depend on. I set the tone of the situation, which White All-American neurotypicals respect. And I get to dictate the terms of my demands.

Don’t get me wrong – I have no problem with my vulnerabilities. They don’t embarrass me. They don’t horrify me. They are what they are — weaknesses, deficits, vulnerabilities. But I’ve learned from a lifetime of hassling with clueless people who spook easily, that I can get accommodations much more easily and more effectively, if I frame them as demands I’m making in order to operate at peak level, rather than just making do to barely get by.

And there we have it.

Advertisements

Welcome Letter to Freshly Minted Autistics – now in paperback

When I wrote Welcome to our world – now it’s your world, too, there was a whole lot of positive response. And I thought it would be kind of cool to have a paperback book version of it. It might be something that people can give to their loved-ones who have just been diagnosed, or it could be a gift for someone who’s just realized they’re on the autism spectrum.

I’m a big fan of books – they’re tangible, tactile, and they don’t need to be booted up, upgraded, or shut down when you’re done with them.

So, I went ahead and converted the post into a little pocket book and made it available here

Welcome to Our World – Now It’s Your World, Too

By Visual Vox

Paperback: 48 Pages – with pages in the back for personal notes
Dimensions (inches): 4.25 wide x 6.88 tall
Price: $2.95
Prints in 3-5 business days

Welcome to Our World - Now It's Your World, Too

Book Description:
Realizing you’re on the autism spectrum can be both exciting and confusing. Many of us feel elated at discovering there is an actual reason for how we feel. For many of us it’s very exciting.
At the same time, so much is said about Aspergers Syndrome and autism, and a lot of it is inaccurate or driven by fear and misinformation.
How can you know what lies ahead of you? How can you figure out how to live your life the best way, with all this new information?
This book is written by a woman on the autism spectrum who realized she’s “a total Aspie” in February of 1998. This is her personal message to newcomers to the spectrum – words of hope, words of warning, and always – always – words of encouragement.
If you are new to the autism spectrum (officially assessed or self-diagnosed), or someone you love is seeking answers or newly diagnosed, this book is for you. It’s for them. It’s for all of us.

Of course, the original post is still up there. It will stay there. I just thought it might be nice to have a book version, as well.

So, the Aspergers/Autism assessment went well

Picture of rewards card with "AS" on it, with half the holes punched out
Gettin’ my AS membership card punched 😉

For the past several days, I’ve been wrapped up in prepping for and participating in an assessment to see whether I’m on the autism spectrum. I’m exhausted, frankly. It was an arduous process for me, that involved collecting information from my past, digging up old school pictures (which prompted a lot of bittersweet memories), asking family members to write up descriptions of my personality, including my strengths and challenges, and (perhaps most difficult of all) composing a list of all my strengths, gifts, talents, and abilities. It was a lot of work over the weekend, and yesterday was a whirlwind of activity — on a few less hours of restful sleep than I’m used to getting.

It was totally worth it, though. In the end, I haven’t gotten a formal-formal diagnosis (that letter is forthcoming at a later date), but it was pretty much a foregone conclusion that I’m smack dab in the middle of the spectrum. I showed so many signs and indications — even a bunch that I had not realized were there, which showed up on my old school pictures and my report cards from first grade. It was quite the experience. And even if I came away with a result that indicated I’m not actually on the autism spectrum, that would have been fine. Because it would have been substantiated in fact, rather than ignorance and bias.

That fact piece is critical to me. No surprises there 😉 I’ve been 98.738% convinced that I’m on the spectrum since February of 1998, but I’ve never been able to get official confirmation of that from a trained professional. I don’t really feel that it’s essential for me to get a diagnosis, in order to live my life effectively, but there’s always been that nagging thought in the back of my mind. And really, the whole reason why I couldn’t get a diagnosis was because of money, time, and expertise. No one I investigated could meet me in the middle on any of those. So, I’d just given up on the idea — bagged it, because the costs were outweighing the benefits for me.

That changed in the past six months. I got involved in a local AS organization, and I actually got some support around diagnostic options. I went down a couple of unproductive paths, before I finally connected with someone who really worked well for me, in terms of time, money, and expertise.

I’m not going to name any names, because everybody needs to find their own way, and I don’t want to point anyone in any certain direction. It’s a good exercise, in any case, to take the initiative to get that diagnosis — if, in fact, you feel you need one. There are people you can reach out to personally to get insights and pointers. That’s what I did. So, you just have to look around, be creative. Keep pressing on, till you get what you need.

That’s what I did, and that’s what I got. Mission accomplished. And after years of telling myself that I didn’t need an autism diagnosis to live my life fully, it feels a little surreal to be one step closer to having that “certification”, if you will.

So, what changed my mind? Well, first and foremost, I found someone who could work with me in terms of time, money, and experience. I wasn’t just flinging darts wildly into the dark, hoping to hit the board — which might or might not be there. The person I worked with actually knows about women on the autism spectrum. And her costs were less than half of the charges of one counselor I was going to work with. AND — most importantly — she did it in two different 2-hour sessions at a time I could actually accommodate without having to take time off work.

On top of that, I felt I needed an autism assessment for the following reasons:

  1. I needed an autism-specific conversation with a professional. I’m 51 years old, and I’ve been living with what I consider “spectrum-y” experiences my entire life. I wanted to talk to someone freely about those things in the context of the actual autism spectrum. I’ve usually talked about them in more general terms — which opened the door to all sorts of other “interesting” diagnoses and assessments. Everything from being shut down emotionally, to being unwilling to engage, to having been mistreated by my parents, to the possibility of repressed trauma that I haven’t been able to face, out of fear and anxiety. I’ve wasted so much time, going down those roads — or fighting people who wanted to take me down those roads — when I could have been just living my life on my own terms.
  2. I wanted independent corroboration of my beliefs. It’s just good science. And it’s good practice for me, because I can spin up all kinds of interesting scenarios in my head, and despite my honest-to-a-fault inquisitive nature, I can get clued into a certain piece of things that skews my vision otherwise.
  3. I wanted to finish up the quest I started in 2008. I don’t think I ever got over the repeated dismissal of my suspicions, and I needed to have someone with actual experience with autistic women to weigh in on my findings and beliefs. I was actually fine with the idea that I’m not completely autistic, that it might be something else — if that’s actually the truth.
  4. I’d like to have that little validation “in my back pocket”. So, when I discuss my experiences and people start to take exception to my statements about autism and the autistic experience (as they will — they always will), I can say, “Dude, like, I’m #ActuallyAutistic. Back off.” Not that it’s going to change anybody’s attitude about my beliefs and approach. They’ll find another way to discredit me — like say I didn’t get the right kind of diagnosis, or that I’m using the wrong criteria, or whatever. But at least (if the assessment comes back positive) I’ll have this additional thing in my favor. It’s like getting my frequent-customer ticket punched. It may not entitle me to a free cup of coffee, but at least it’s a step in that sort of direction.
  5. It may come in handy later, if my life gets unmanageable. If I ever get into trouble with my cognitive-behavioral repertoire, and I need to see additional help, a positive autism assessment can help me have the conversations I need to have with providers who can be of more help. Given that autism awareness within the #ActuallyAutistic population can serve to help us mitigate, even bypass, the troubles that usher us into the Klaxon-level danger zone, I think it’s actually less likely that I’ll need advanced help, once I have a formal diagnosis on paper. But I have to think of my advanced years. There may indeed come a time when my needs outstrip my own capacity to serve those needs, and having something on record that places me in a recognized more-help-needed group, is a kind of insurance against the awful things I see happening to people in their later years.

So, those are my Top Five Reasons for getting assessed. I’ll reiterate that an autism assessment by a professional is NOT something I feel I need, in order to live my life fully and successfully manage my issues. But it is something that could come in handy later. And with any luck, the next time I approach a medical or doctorate-level clinician about Aspie-style issues, I’ll have an official diagnosis to present to them, rather than a stack of printouts of criteria I meet, test results from the past 10 years, and a level of familiarity with autism and Aspergers that far outstrips theirs and makes them uncomfortable, intimidated, and downright unhelpful.

Anyway, it’s a plan. And I’m all about my plans. I can rest now… just let it sink in… and stop having all those pointless, exhausting arguments with other people about whether my spot on the autism spectrum is imaginary or real.

For the record, I will continue to vociferously defend the validity of self-diagnosis, I will never, ever insist that another person (especially women) be formally diagnosed by a board-certified medical professional or Ph.D clinician in order to belong to the autism community. I will not cast aspersions and doubts upon others’ perspectives on their autistic lives, because they “lack” a formal diagnosis.

There are too many hurdles in the way of diagnosis, for just anybody to be able to walk out and get a diagnosis. Those hurdles need to be lowered, for sanity to suffuse our discussions. Those hurdles need to disappear, in fact. They need to not even be issues.

But regardless of whether or not hurdles to diagnosis continue to exist, I will continue to write and share and advocate for a wider, more comprehensive understanding of what it means to be autistic in a world that is anything but… a world which wishes we were either completely different, or we didn’t exist at all.

And let’s not forget compassion. That, too. I’ll be advocating for that, as well.

Great news about the #Autistic Adults over 50 years of age survey

Last week, I ran into one of the organizers of a survey of adults over 50 who are on the autism spectrum. Their participation level, as of last week, was twice what they originally expected. AND the participants are about 50/50 between men and women.

This is significant! Women on the spectrum have been woefully under-represented, as well as misrepresented to such an extent, that we have literally been blocked out of recognition and access to supports we desperately needed for so many years. The same holds true for men who are atypical and don’t display the stereotypical traits assigned by researchers working 70+ years ago, but for women especially, this is a big friggin’ deal, because it exposes us to heightened risk of domestic abuse, assault (sexual and otherwise) and a host of other social predations which we are culturally trained to just . let . happen … without saying a word about it. So, we are just a few steps closer to being able to talk about women on the spectrum — and other atypical autists — at a more advanced level than ever before.

If you are an adult over 50 years of age who’s on the autism spectrum, and you haven’t yet joined in, please follow this link and contribute – it’s a long survey, but it’s worth it. It’s so important!

We still have a long way to go, but this is at least a start.

The survey asks you about your past – how things were when you were growing up, how you did in school, how you did with friends, if you believe that Aspergers / autism affected your experiences. It asks about how you have been doing in life, where you have needs, where you have had those needs met — or not. It’s very comprehensive, and it took me more than a few hours to complete. Apparently a lot of people took the considerable time to contribute, which is so, so important.

One of the things the organizer said, is that many responses came from the U.K.

And that’s great. Because the U.K., for all the difficulties it has with providing timely diagnoses and supports, is decades ahead of the U.S. in terms of just understanding the autism spectrum. Some days, I wish I lived there, instead of here… but no matter where you go, it seems supports and resources for Aspies / autistic folks leave a lot to be desired. And frankly, the bullying that seems to be part and parcel of British life is more than I care to take on.

So, I’ll stay here. And visit when I can. If I ever can…

Anyway, the survey is still ongoing – I believe till the end of the year, so please spread the word and let people know, so they can take part. You can be officially diagnosed, or self-diagnosed. You just need to be over 50 years of age.

Thanks for reading, and thanks for sharing this important message!

If  you’re an autistic adult over 50 years of age, and you would like to help move the world of autism research forward, please follow this link and contribute – it’s a long survey, but it’s worth it. It’s so important!

Taking a more positive direction with my work / writing

3-dimensional rendering of a building interior with high walls and arches
My plans only look confusing from the outside. Inside my head, they are all very well structured and interrelated.

I’ve got a number of projects in the works.

The main writing project I’ve got going is Into the Deep (tentative title, which I’ve changed a number of times) – a memoir of a sensory day, wherein I describe my amped-up sensory experiences and overload… which ultimately culminates in a meltdown. Sorry for the spoiler, but knowing how it ends up is actually an important part of the entire book leading up to it. It dates back to circa 2008, when I was diving into my Aspergers and sensory issues with gusto. My focus, over the years, has been on describing the stresses and strains that accompany extreme sensitivity, coupled with environmental and logistical demands of just living your life.

I’m also working on compiling criteria for assessing the prevalence and impact of Aspergers / autism in a person’s life. I’ve compiled hundreds of different criteria from a number of well-known and trusted sources, and I’m in the process of grouping them into meaningful categories which pertain to the AS experience. I was full-speed-ahead with that one for weeks and weeks on end… then I ran out of steam, lost focus, and I’m getting back to it again. I’ll produce several different tools out of this — a spreadsheet with some calculations, so I (and others) can record and also chart issues in childhood, teen years, adulthood, and elder years… as well as an online version that will generate better-looking charts and have the ability to print out what’s been entered.

I’m also refining the AS “Spot Check” tool I built a few weeks back. I have a number of features I want to add to it, and I can think of additional ways it can be tweaked.

I’ve got some other writing projects in the back of my mind — especially relating to how women (and non-stereotypical men / non-binary) folks experience and present when they’re on the autism spectrum.

And of course, there’s always my own self-assessment work, which I’m doing partly to console myself about not having access to an Aspergers assessment, partly to get clear on my situation so I can manage my life more effectively, and partly to prepare for an eventual assessment which I will definitely be pursuing, as soon as I can get the money together and spend it without jeopardizing my health and welfare.

It only looks like a lot if you’re not in my head. Inside my head, everything fits nicely into an overall schematic that’s like the blueprints of a large and sprawling building. It’s very 3D, this schematic in my head — no, 4D, because it involves the passing of time, as well. I can literally see how things will evolve and develop over time, expanding from a framework of ideas into a real and literal thing. It feels awesome to have a clear view of what I’m doing and how it’s evolving and what it may eventually be (with some modifications, of course).

Something has been missing, though. And I realize that I’ve been paying far too much attention to the Aspie “issues” I’ve been dealing with, at the expense of the really wonderful things about being on the autism spectrum. There is so much joy, so much light, so much brilliance and enjoyment that comes from uniquely autistic living, why get bogged down in the issues? It’s not like I’m looking for services or assistance. It’s not like I need to prove my Royal Aspieness to anybody else. I’ve learned how to “pass” in the NT world, while knowing all along that I’m nothing — but nothing — like the people I’m emulating. And that’s okay. It’s like being fluent in a foreign language, so you can comfortably live abroad for six months out of the year. It doesn’t make me less of who I am. It makes me more, actually.

So, yeah. I’m letting go of the intense need to have an official diagnosis for Aspergers, and I’m just getting on with my life. And I’m reconsidering the approach I’m taking with my writing and other projects.  I want them to be more accurate, more truly reflective of what my experience is like on a daily basis — which is not the kind of continuously excruciating that I hear others discussing.

It’s awkward, yes, at times. And it’s lonely. It’s confusing. It’s consternating. But that’s life.

The “flip side” (imagine a record being flipped over on a turntable – if you can conjure that image from the dusty, distant past) is that I have so many wonderful, blissful, ecstatic experiences of unbridled joy, richness, intuition, grace, and just plain fun, that it totally, utterly cancels out the pain and frustration. And it does it in ways that make me never, ever, ever want to forfeit my Royal Aspieness.

Cutting the pain of autistic separation from the “allistic” world (I learned a new term in the past few days — “allistic” which equates to “neurotypical”, from what I gather)… solving the problems of Aspergers by reducing my autistic tendencies… it’s just not worth it to me. I’d rather have the pain, if it means I get to keep the joy. To be honest, the joy far outpaces, outsizes, outstrips the pain — a thousand times over.

I’ve written before about wanting to bring out the joys of Aspieness. But that’s not entirely true. What I want, more than anything, is to be 100% honest and show the full spectrum of Aspie life. Not just the struggles which are detailed to justify funding. Not just the problems that are raised in hopes of crafting solutions. Not just the ways we are put down, disadvantages, and disabled by societal norms. But the flip side of that, as well — the parts of my / our life that are so vibrant with irrepressible life, that we wouldn’t trade our autism for all the money or social acceptance in the world.

“Spectrum condition” is right. There’s far more to tell. So, in a sense, back to the drawing board, to chink the proverbial gaps in the structure I’m building in my life.

Aspergers assessment — too rich for my blood, actually

abstract colorful artwork from of lines and shapes
How I’m feeling, right about now

So, my Aspergian keen attention to detail, coupled with a completely lack of far-reaching oversight has stumped me, again. If I’d been looking at the big picture, I would have realized that my plans to get an Aspergers assessment were ill-advised. I simply don’t have the time and money for it.

I had an appointment lined for an Asperger’s assessment at the end of September. The cost was about $1,300 (give or take), and it will last for 5 hours, with a lunch break in between. My partner will need to be there, to corroborate my data, and at the end, I’d have an official diagnosis that’s valid and recognized — except for government support (which I don’t need, yet). If I plan to apply for government assistance, I need a medical or psychiatric or psychologist’s diagnosis.

I thought it was going to be fine, even though the person doing the assessment isn’t in my insurance network – and even if they were, I wouldn’t want insurance involved, because it can work against me on down the line and mark me with a “disorder”. Ah, the joys of “managed” healthcare.

But when I stepped back and looked at my finances, shelling out $1,300 for an assessment (while better than the $3,500 I’d have to pay for a medical/psychiatric one), is still too rich for my blood. I have been living paycheck-to-paycheck for years, now, given that I’m the sole provider for my household, and we had a bunch of medical bills and issues about 10 years ago that completely wiped out my retirement fund.

My retirement fund / safety net right now is about $3,300 — that’s taken me a full year to build up to. There’s other money in the bank, but we have a number of house repairs to do, and frankly, having no financial safety net at all (including no retirement savings) is something I need to remedy.

Do I slash my household’s safety net by nearly half, when I’m not even going to get anything from it other than possibly peace of mind and a way to cut to the chase in my discussions with mental health providers? Do I potentially jeopardize our health and safety and what tenuous security we have, just to have someone else in an official position tell me something I’ve been 98.72% sure of, since 1998?

Plus, do I tie up both my partner’s and my own full day — taking a day off work to use up a precious vacation day, and also disrupting my partner’s schedule and putting her through what would probably be a pretty demanding 5 hours of intense scrutiny? She’s going to be in physical therapy for mobility issues at that time, and that’s going to be consuming vast amounts of her resources — physical, mental, emotional.

This is the kind of thing you do if you’ve got time and money to spare, as well as a partner who’s comfortable talking about your “issues” — which she really isn’t. I mask and camouflage and blend at home almost as much as I do out in the NT world. I think it would frankly be a little too much for both of us, and it could derail us for days, if not weeks, as a result.

So, do I do this? Does the benefit justify the cost?

Nah. When I look at it from the high-level view and consider all the different factors, I can’t see the point. In the grand scheme of things, an official diagnosis will only help me if I need accommodations, and I don’t — won’t — need them for the foreseeable future.

Never mind all that. It’s deeply disappointing, and I did shed a few bitter tears last night. But I just can’t justify draining my hard-earned safety net (such as it is) for something that’s more along the lines of a curiosity-satisfier than something I require for my survival.

Now back to my regularly scheduled programming…

So, I showed up with my documentation about Aspergers…

Stack of papers with bent edges protruding from the pile
I did my research and compiled my results… A lot of good it did me

It was summer/fall of 2008. I had been 97.72% sure I was on the autism spectrum for over 10 years. I’d been urged by my coworkers to take some Aspie quizzes in February of 1998, because they told me it “would explain a lot”.

I took the quizzes. In English and German. Results were the same — I’m on the spectrum.

I went on Wrong Planet. Determined that it was full of angry young white men, and I didn’t really feel like I had that much in common with people there. I also didn’t much care for the idea of being autistic (however “mild” my case might be). I lived in a high-tech world filled with Aspies, and I decided it was just my life, just my way, and I didn’t need a whole lot of help or support with it.

Fast forward to 2008. My partner had some serious health issues. So did I. In the process of dealing with doctors and changes to my schedule and the uncertainties of, well, everything, I started to meltdown more frequently (weekly, sometimes daily, instead of monthly). I couldn’t piece thoughts together. I needed help figuring things out. My brain wasn’t working. My whole system was on high alert, and I was at a loss for how to do much of anything. I had no friends to rely on. I didn’t know how to talk to doctors or other healthcare providers about anything but the most dire and most obvious of situations.

I was melting down. I was shutting down. I was in need of real help.

One of the benefits of having my life turned upside-down, was that I had a lot more time to myself. I went to working half-time, while I helped my partner recover. And in my extra time, I did a hell of a lot of research. Diabetes. Cognitive processing. Neurology. Resilience. Stress inoculation. Stress hardiness training. And Aspergers.

On top of this, people around me started to mention autism and Aspergers to me. Either co-workers at my new job, or total strangers who just met an dinteracted with me for a few minutes.

My co-workers would talk about Aspergers… “Do we know anyone with Aspergers?” wink-wink, nudge-nudge… and they’d look at me for a few moments… as though waiting for me to speak. “What?” I’d say, and they’d go back to their conversation with more shared glances and smiles… and I’d go back to my programming work.

Total strangers would ask me if I knew about Temple Grandin. No, I didn’t. “You should read her books! She’s a high-functioning autistic woman!” Why would I want to do that? Temple Grandin? What sort of name was that?

It happened a bunch of times in 2008, and my readings about Aspergers — with ten years of additional research, since I’d last immersed myself in that as a special interest — brought up a whole heckuva lot of parallels with my life. The difficulties I was having could actually be explained by something! Wonder of wonders! And here I was thinking I was just hopelessly lost and confused and worthless. Au contraire! I simply wasn’t leveraging my God-given abilities as well as I could.

At the time, I was seeing two different counselor types — a psychotherapist, to help me deal with my emotional overload, and a rehab counselor who was helping me with the logistics of executive functioning problems. I had also just found a new doctor, who seemed a hell of a lot more promising than the last mousy, mindless one I’d seen, who’d told me that clearly observable phenomenon — like discharge from certain infections — didn’t exist. And a good friend of ours (who was a psychotherapist by trade) had turned into an even better friend, providing much-needed support, when we were both on the mend from some pretty hair-raising medical emergencies.

I was in a place where I finally felt like I was getting help from good-hearted people with expertise and experience.

And best of all, I’d found great info about Aspergers that I felt could really help explain things for them, so they could help me even more.

I wanted to make sure, though. So, I went through the checklists I’d found, made notes, highlighted things I felt were particularly pertinent to me. I did a retrospective on my family and discovered a whole truckload of Aspie-type behaviors and tendencies in my parents, siblings, grandparents, cousins, aunts, and uncles. I ended up with a sheaf of papers discussing the Aspergers connections and evidence in what I considered a fair amount of depth.

Research in hand, I forayed into these relationships and disclosed what I thought was the case. It did not go anything like I’d expected.

According to the psychotherapist (who was living with a man who acted just like he was lifted from a Tony Attwood description), I couldn’t possibly be an Aspie. Her boyfriend’s sister was a real Aspie, and she’d interacted with her at family dinners many a time. I didn’t act anything like her. I wasn’t impaired enough to be anywhere hear the autism spectrum. That therapist’s declaration was so dismissive — almost derisive — it took me totally by surprise. Here, I’d showed up with more than ample evidence (I gave her a copy), in good faith, with the best of intentions, wanting only to get to the real bottom of my issues, understanding the whole of my interconnected system in productive and insight-provoking ways. But she treated me like a foolish, attention-seeking, liberty-taking upstart who spent too much time on the internet.

According to the executive function counselor (who had worked with kids on the spectrum before), I was suffering from “medical student syndrome”. Again, it was obvious I had too much time on my hands. I was spending too much time on Wikipedia, and I was empathizing too much with other people’s “real” problems, to take the focus off my own relatively minor issues. I was too social, he said. I had empathy, he said. I made eye contact. He asked me pointedly if I could figure out what was going on in other people’s minds, and the answer was “no”. But I was so upset and intimidated, I just nodded mutely, wanting to get the painful conversation over with. “You see?” he said triumphantly. “You don’t have Aspergers!”

My doctor was the only one who didn’t treat me like a total idiot and tell me I was wrong. But she really just indulged me. She didn’t contradict me. She was just happy to see that I wasn’t acting so depressed anymore — she’d thought I might be clinically depressed, when I’d first met her. She didn’t dismiss me or tell me I was wrong — she just looked at me oddly… and humored me. I didn’t sense a recognition or openness with her, so with her, I let it drop, as well. I’d disclosed my belief. As long as she didn’t belittle me, I could live with her skepticism.

As for our friend, when I told her excitedly — in a breathless rush of information about my family, my experiences, my beliefs, and the evidence I’d found — she nodded tentatively, then shook her head. “No,” she said. It wasn’t possible. She worked at an engineering school, counseling uber-geeks of the uber-geeks, and I wasn’t nearly as impaired as they were. She knew “all about” Aspergers, and I didn’t fit the profile. When I pressed her with additional details, she shrugged, and then held up a thumb and forefinger about 1 cm apart. “Maybe just a little,” she said, and I let it go at that.

So, I was 0 for 4 — well, maybe .5 for 4. But certainly, the three individuals I’d hoped to get some support from had shot me down without more than a moment’s consideration. And it was crushing. Just crushing. I couldn’t bring it up anymore, I was so upset. I put away my collected research and turned my attention to the day- to-day business of getting our life back on track. Pursuing it further for any help was about as pointless as pointless could be.

But I still managed to get some help from one of them. The executive function counselor I was seeing, I managed to steer in directions where he could help me with my Aspie issues — so long as I never called them that. He helped me a lot, though it was in ways he probably never guessed. Decision making. Planning. Follow-through. How to have conversations with people. How to ask for clarification. The whole time we were working together (about 8 years), he would look at me sometimes like he didn’t know why I was there. I seemed so… normal. And once he told me that he thought I just met with him each week because I was “lonely”.

Au contraire, dipshit Mr. Rehab Man. I need more help than you will ever know, because I will never tell you. Because  you don’t believe me. You never have, and you probably never will.

As for that friend, well, she turned out to be a pain in the ass, in the end, and we haven’t seen much of her in the past few years. She was helpful in ways, and hurtful in others. I’m ambivalent about her, but my partner still considers her a friend. And we’re both still grateful for the help she gave us, when no one else could or would.

I’m currently seeing another executive function rehab person, taking the same approach as before — dealing with my issues as garden-variety issues, rather than Aspie issues. It seems to be working so far, except that this new counselor is really into “getting in touch with your feelings” which is SO ANNOYING to me. She’s keen on “emotional release” stuff, which I have to fend off repeatedly, to avoid a meltdown. I’m probably not going to bother dealing with her about the Aspie stuff, because although she does do autism assessments for children, when it comes to adult women, she doesn’t seem too clued in.

If she were, she totally would have mentioned it to me, by now. I don’t mask with her. I act more like my Aspie self with her, than I did with the last one. But so far, not a peep about my tics and stims and other strange behaviors that draw looks of dismay from the neurotypicals in my life.

I think the page is going to turn in a few months, however. I have a tentative appointment to see a qualified therapist who’s certified in my state to do AS assessments and diagnose. For government support purposes, I’ll have to get a medical/psychiatric diagnosis, but that’s the last thing I want, right now. I just want an official DX that works like a key in the lock to the gate that encircles the people who specialize in this topic. I can’t get through to them, unless I unlock the gate. And I need an official Aspergers / AS diagnosis to get there.

So, with any luck, by the end of September I’ll have that. We’ll see.

We’ll see.

Today I am here – very focused on my special interests… isolating

as-spot-check-results-7-5-16
I really don’t feel like going to work today. I spent the last three days in blissful solitude, only going out into the company of others once — on Friday night for fireworks. It went pretty well. For the first time, I took my earplugs, and the experience was a LOT better than ever before. But my partner also got to chatting with some people who were nearby, and that always puts me on edge. Because I’m expected to interact.

Please. Go away.

It’s not fair to my partner, of course, because after a few hours with silent, predictable me, she needs to interact with social people. She’s friendly. She likes to connect. She likes to promote her activities and bring people into her social circle. Quelle horror, is all I have to say about that.

Looking at the graphic above, I can see that my sensory issues have NOT been acting up as much as usual. That’s a blessing. And I think it really has to do with how active I’ve been in pursuing my special interests — coding up my Asperger’s Autism Spot Check Tool. It’s been a really fun weekend. I’ve been having a grand time, refreshing my memory about the web development work I used to do all day, every day, for about 15 years. I’ve missed it. And it’s whetted my appetite for more. 

In terms of Sensory aspects, I have been having a little bit of trouble with tactile defensiveness — touch feels painful to me, especially water on my skin — but actually less than usual. I noticed that this morning, as I was making my breakfast. The biggest sensory impacts have been with noise sensitivity, sensing where my body is in space, my balance, and my sense of time. I’m tired — I haven’t been sleeping that well, thanks to being off my schedule. But I’ll be able to remedy that in the coming days and weeks, now that things are back to normal.
as-spot-check-entries-7-5-16-sensory-social

In terms of Social aspects, I have really just wanted to cocoon myself away… keep people at bay, so I don’t have to bother with figuring out their “stuff”. I really just want to finish up my system — upload the new help files, refine the text, take care of the details that need addressing… and also do some blogging about this tool and how it’s helping me.

The main thing is really that it’s giving me a high-level visual of how I’m doing, what aspects of my royal Aspieness are factors in my daily life, and pointing me towards areas where I can make some adjustments to even things out a bit.

Behavior-wise, I’ve been doing pretty well. (Oh, I see that the placement of the quadrants is backwards in the input form – I need to switch that, so it matches the graphic – that will be in the next release.) I love – love – love my routine, and I’m very dependent on it. So, yes, vacations and time away from my regular schedule can be a problem (and make me more inclined to isolate and pull back from the rest of the world).
as-spot-check-entries-7-5-16-behavior-thinking-emotion

Ironically, I haven’t really been stimming that much, lately. Or have I? I think maybe typing is a form of stimming. And I did go on a “jag” the other day of running in circles around the house, racing in a big circle through the living room and kitchen and dining room a bunch of times, so that was a form of stimming. But this morning not so much, so it gets a low score today.

I’m strongly list-dependent (which is a love-hate thing for me), in no small part because I’m highly impulsive and impatient and distractable. I’m also feeling highly visual — not really wanting to talk much (see Non-Verbal above). Of course, when my wife appears from her bedroom, first thing in the morning, I have to kick into “NT-gear” and be all chatty and conversational, because that’s how we roll. But it takes effort on my part. It doesn’t come naturally. I just do it because it’s what the situation requires — and it’s a whole lot more pleasant than pissing her off with being taciturn and grumbly, first thing in the morning when she wakes up.

It’s all a part of meeting people half-way. And the best part is, she goes back to bed feeling good, and I get to return to my work without a lot of angst and wondering what I did wrong this time.

The best part about my AS “Spot Check” self-assessment this morning, is that “Meltdown” is nowhere to be seen. It’s not exactly non-existent, but it’s so way-way low, that it’s not taking up a lot of energy from concern. And that’s a very good way to start the day.

Oh… My hands are tired. And it’s time to go to work. So, that’s it for now.

Where I am today

spectrum-aaa-screenshot-7-4-16

Here’s “where I’m at today”. Very focused. Very intent on a narrow range of interests.

But of course! I have to put my new visualization tool out there!

I’ve got the first version working. Take it for a “whirl” and see how you like it.

I think this will come in handy 🙂

AS Spot Check Tool – Now live on Spectrum–AAA

Version 1.0 is now available!

The Aspergers / Autism Issues “Spot Check” Tool is a tool for individuals on the Autism Spectrum (or their loved ones or caregivers) to assess and manage the state of their autism.

This tool lets you “check in” about common autistic aspects and see which ones are most pronounced. For those of us who are great at seeing the proverbial trees (in all their detailed glory), but sometimes have trouble seeing the proverbial forest, this tool provides an overview about which ones are most pronounced, and which ones may be causing the greatest challenges.

See https://spectrumaaa.wordpress.com/aspergers-autism-spot-check/ for more.