There’s been some good conversation going on over at Twitter about diagnosis and support for “late-diagnosed” autistic adults. Lots of us get assessments / diagnoses after years and years of confusion and struggle… and then we’re turned loose in the world without any reliable supports.
This seems particularly true in the UK, where you can get an official diagnosis without draining your retirement fund and putting your life in danger (by spending thousands of dollars you actually need to survive – as happens here in the States). Granted, it can take months, even years, but it’s available via the NHS. The problem is, apparently there’s not a whole lot of support there for newly diagnosed adults. You can get a diagnosis, and there seems to be less stigma around being autistic, but you can’t get much support after the fact.
In the USA, things are different. Diagnosis is fraught with all kinds of very real practical considerations and dangers. Getting officially diagnosed can marginalize you and make it hard to get (and keep) a good-paying job. Plus, it can make you a liability to your employer, which may be obligated by law to extend certain accommodations to you and incur more expense. So, if they’re deciding whom to employ based on their return on their investment in you, an autism diagnosis is going to reduce their return on you and can work against you in subtle ways.
Once you get diagnosed here in the States, there also aren’t a lot of uniform supports in place. There are organizations that provide some support in some regions, MeetUps we can attend, special interest groups we can participate in, and of course there’s the Internet. Facebook. Twitter. But as for standards of care? Hmmm. Don’t seem to be any. Especially for healthcare providers, who just amaze me with how little they seem to actually know about dealing with us.
I’m working with a clinician (for a variety of behavioral health and life logistics issues) who’s very “medical model” and very deficit-oriented. Her attitude fluctuates from pity to a genuine desire to be helpful. She has a good heart, but honestly, her demeanor is frequently annoying to me. The way she approaches my issues… very deficit-oriented, very focused on fixing what’s wrong with me. And all the while, it feels like I’m a subject of her study, the object of her intention to make things better… for me.
Now, the thing that complicates our working relationship is the absence of discussions about autism. For personal and professional reasons, I don’t want that anywhere on my medical records. I just don’t. There’s too much misinformation about this, too much bias, too much prejudice. I’m a queer woman on limited financial means making my way in a world that would love to kick my ass. No way am I martyring myself for any cause by betting on the capacity of complete (neurotypical) strangers to judge me on my merits. Hahahaha. Yah. No thanks.
Anyway, an autism diagnosis shouldn’t matter in my work with her. Why? Because I think there’s a better way to assist people with “spiky” ability/challenge profiles, and that way doesn’t need to be tied to the tired old American A$ definition of autism, in order to be helpful.
At the same time, the approach I’m envisioning is every bit Autistic as I am. And while it can apply to others with spiky challenge profiles all across the board, I think it can be particularly helpful for Autistic folks. And in fact, I had been using it, practicing it, refining it for something like eight (8) years with the clinician I was working with before the current one. And it’s worked extremely well in helping me manage my issues and gain more agency in my life. It’s helped me work through a lot of autistic issues in my life, and it’s proven effective even in the face of a totally clueless clinician who honestly didn’t know what they were looking at.
Okay, so what’s this magic formula I discovered?
I call it “Dynamic Skills Mapping” (or DSM — hahahahaha! how ironic! love it – let’s take back that acronym, shall we?) — understanding my areas of strength, having a good grasp of my areas of weakness, and then figuring out how to use my strengths to deal with my relative weaknesses.
Ferinstance: My short term working memory is terrible. I will literally forget what people say to me just 2 minutes later, if I’m interrupted. This makes it hard to have a conversation, and I’ve struggled for years with being able to talk to people. I’d just get lost in the middle of conversations and end up faking my way through the interaction without any clue what we were talking about. People thought I “got” what they were saying to me. But honestly, I’d get to the end of an interaction, and I’d have no clue what just happened. It’s actually easier to get through life like that, than you’d think. And nobody outside of me seemed to realize. At all.
So, yeah, it was a problem, and I knew it. But I had a hidden advantage — strengths I’d built up were available to put to good use in my own individual ways. All that faking and interactive practicing had trained me to follow the “flow” of a social interaction. And I am hypersensitive to others’ “energies”, which helps me respond to their shifting moods (even if I don’t immediately understand them).
So, to keep myself engaged in conversations and keep the meaning of the discussion fresh in my mind, I started interspersing my conversations with queries and questions to get clarification on things.As people talk to me about things, I practice what’s called “active listening”, where I’d repeat back to them what they said to make sure I was getting it right. Sometimes I’d phrase it wrong, so they could correct me. They were a lot less offended by that, than I thought they’d be. They didn’t seem to mind correcting me at all — it meant that I was actually listening to them, interacting, paying attention to them (which is really what mattered to them).
This “step-wise flow” created conceptual “hand-holds” in the conversational flow, which I could use to keep myself engaged and still aware. And I was much more involved in social interactions than I’d been, pretty much my whole life.
Don’t get me wrong — there are still times when I just don’t have the capacity for in-depth social interactions. And this whole interacting business doesn’t come naturally to me. But do I have to talk to people for my job and in my home life, so changing my approach to conversing with them, using skills I’ve developed over the years, has helped me to overcome the most pernicious, debilitating aspects of my interpersonal disconnectedness.
That’s one example. There are many more.
- Using my visuospatial skills to see how things can be fixed.
- Using a combination of my sensory extremes and my devotion to routine to remember important things and create more flow in my life.
- Using technology (spreadsheets, programs I’ve written, various devices, the web, etc.) to both soothe/stim as well as better understand and manage my life… and experience radiating bliss on a regular basis.
- Using my bullheaded persistence to teach myself to juggle (3 balls, that’s it, but it’s enough), and regulate my emotional volatility.
- Focusing on the areas where I’m blazingly smart, in those times when I’m feeling stupid and overwhelmed, to logically convince myself that I’m not a complete idiot and waste of space.
- Leveraging my passion for research (and my ability to find just about any piece of information I need – if it exists) to teach myself about alexithymia and realize that much of my sense of worthlessness is physiological in origin, not based in actual fact.
- Using my intense focus and delight in certain areas of research to “tune out” the pain of my perpetual sensory overload.
- Using my zealous devotion to routine to build healthy habits and make the important eating and exercising changes I needed to create.
- Finding professionals with specific areas of specialty which could be transferred to an autistic context, and using their services to address issues at the core, rather than calling them out as “autistic” and being subjected to their gross ignorance and negligence — basically, leveraging their strengths, while minimizing the damage they could do.
Fundamentally — bottom line — this “DSM” approach is about
- Recognizing my strengths, putting together an inventory of my abilities,
- Being honest about my deficits and difficulties (also documenting them), and
- Matching my strengths to the challenges I’m up against.
Key ingredient: I have to be totally honest with myself about my relative weaknesses, and not tell myself that all is well, when I’m really struggling — but also not wallow in it (poor me!), and take constructive action, using my well-documented strengths.
When it comes to helping other Autistic folks with their issues, I think this kind of approach can be very productive. Although each of us is unique with our own spiky profile, we still do have that commonality of spiky traits. Why not inventory our amazing strengths and then “map” them to the challenges we face?
Taking a strengths-mapping approach could go a long way towards:
- De-pathologizing our traits and profiles,
- Either making the medical model obsolete or expanding it to include the good along with the ostensibly “bad”,
- Making support about more than focusing on all the sh*t that’s wrong with us,
- Making the most of our strengths — even strengthening and deepening them, and
- Taking advantage of our Autistic tendency to extremes. That’s not a bad thing; we can be extremely successful, not just extremely “put upon” by the rest of the world.
We have a whole lot of advantages, by right of being Autistic. Why not make the most of them, in our own individual, dynamic way(s)? Why not turn the tables and invest a whole lot of time and energy in exploring the ways in which we’re fantastic, rather than marinating in our shortcomings?
Imagine how we’d feel if we all did that on a regular basis. It could work.