How to address your Asperger’s without ever saying the word

entry to maze - green blur
You have to find a way in, somehow

I’ve been working with cognitive rehab folks for a number of years, now.  I had a somewhat… muddled… understanding of what was going on with me. I knew that the autism spectrum / Asperger’s probably played a part in the issues I’d had my entire life. But not having an official diagnosis — or really anyone around me on a regular basis who recognized my issues as what they were — I was stymied over and over, when I tried to get clear on what was going on with me.

I just didn’t know how to conceptualize it. At all.

Back in 2008, I was having a lot of trouble at work keeping myself in order, getting things done… losing my temper, failing to complete tasks… and really struggling at home, as well. Things were not good, my partner had some serious health issues, we were in a financial bind, my job situation was erratic and stressful, and I wasn’t coping with any of it well.

At all.

At the recommendation of my friends, I saw a therapist over the course of the years. I saw a couple of them, actually, and at first it was good to just have someone to decompress with. But over the long term, talk therapy didn’t really seem to help me. If anything, it made things worse. But heck if I could actually figure it out, or even articulate it to anyone.

At the same time, I connected with a mental health provider with a more neuropsychological perspective. He approached my issues from a neurological as well as a psychological point of view. He worked a lot with ADHD, some folks with autism/Asperger’s, and concussion, as well. His approach was really about getting my brain trained to be more systematic. It was all about strengthening my executive functioning, really thinking things through, learning how to be less impulsive and more considered in my actions.

A lot of things he said and suggested didn’t make a lot of sense to me, so I really focused on workplace concerns — repairing my frazzled relationships, working on my performance, figuring out social / political issues, and not bolting from a job as soon as it got too boring or too challenging.

He really helped me a lot. And he did so in ways he probably never realized.

Back when I was first interviewing him to see if we could work together, I shared that I believed I has Asperger’s. A number of people had been suggesting it to me, and since I’d tested consistently within the spectrum back in 1998 and again in 2008, I really wanted to follow that up with him. I thought he could help me in that particular way. And when I handed him my sheaf of papers (over 50 pages of documentation about myself and my family, as I recall), I thought for sure he’d see the same things I was seeing.

However, he didn’t look at the papers at all. He gave me one of those inscrutable looks (which I now realize was probably a mix of pity and professional irritation), and dismissed me. I wish I could remember his words that first time, but it seems I’ve blocked them out. (Several years later, I brought it up again, and I do remember what he said to me then — I have too much empathy, I can understand what others are thinking, I have compassion, so that disqualifies me. Never mind that those are all things I’ve either learned from years of rigorous practice, or I have just learned how to imitate.)

I don’t blame him for thinking that way. Lots of healthcare providers do. Especially back in 2008, when the prevalence of under-diagnosed women on the autism spectrum wasn’t particularly well-understood or documented. Plus, I blend extremely well.  I have had to learn over years and years of being on the outside, bullied and marginalized and ridiculed, how to modify my “presentation” to be inobtrusive. And that’s especially true around people in positions of authority, particularly those who are in a position of real influence in my life, who have the power to make my life much better — or much worse.

So, how could he have known what all was going on inside me? He couldn’t.

I have to say, it was pretty disheartening, though, to have him sit there and tell me that none of my beliefs were valid, that I didn’t know who I was, or how I was, and that he — not I — was the only person who could confer that definition.

Any time I questioned that or talked about experiences I was having that fit the descriptions of “autism” that I’ve read about so many times, he dismissed my accounts outright, telling me that I was just creating these concepts in my mind to validate a mistaken self-image I carried with me from childhood. Writing this down now, and looking at it, that sounds pretty cold. It wasn’t like that, though. Not for me, anyway. It was just one more of the things he said to me that I realized was ridiculous and based on his own personal and professional biases, rather than my own individual experience.

To be perfectly honest, it was actually good for me to meet with him on a regular basis. I’ve long had an overly trusting attitude towards authority figures, and our weekly meetings really trained me out of that. I tend to be naive about professionals, thinking they have sufficient education and experience to have deep insights into the world around them and come up with very sophisticated approaches to navigating life. The doc I was seeing had been in his line of work for something like 40 years, and he’d seen a ton of stuff in that time. When he was right, he was right, but when he was wrong, he was so far off-base, it was laughable.

That forced me to really question and critically examine what he was saying to me, what he was suggesting, what he was proposing. And when I really thought about it, in relation to my own life and perspectives, I usually arrived at the conclusion that — in this case, anyway — he had no idea what he was talking about. And I had a much more effective solution of my own.

It also taught me to handle conflict in productive ways. A number of times, I got so angry with him, so overwhelmed at his presumptuousness, so irate at how clueless he seemed to me, that I couldn’t speak. My old friend selective mutism showed up, and I somehow managed to wade through it… and finally get to a speaking moment. I left his office angry, many, many times. At first, I vowed to never return. Just terminate and never come back. I was so angry, so frustrated, so confounded — though I never let on, as I was taking my leave of his office on those days. But after a few days, I sorted things out in my head… made peace with it… and returned the next week, none the worse for wear. If anything, I was better for it, because it trained me to vehemently disagree with someone and be upset with them, without getting aggressive and obnoxious, or presuming that I was wrong to disagree with them.

Ultimately I realized that all the times he was wrong actually helped me more than the times when he was right. It challenged me and prompted me to come up with my own solutions — develop exercises to lengthen my attention span, techniques to better manage my day-to-day life, find ways to engage more effectively with the people around me, invent social approaches that compensated for the relative weaknesses that held me back, and participate in activities that taught me new things and challenged me like never before.

He was pretty amazed at my progress. And I never had the heart to tell him that the best thing he could ever do for me, was be wrong about at least half of the things he said and recommended.

It might sound strange, even depressing. But to me it was invigorating. I really liked him a lot. He was a great guy who had great intentions and was a very kind and caring individual. He genuinely wanted to help people and make their lives better, and there was no way I was going to undermine his confidence by telling him I thought he was completely off-base in countless ways.

All that time, I was working on my Asperger’s issues, and he probably never realized it. Each week, I had my scheduled appointment with him, which was very comforting and reassuring. I knew what to expect each week, schedule-wise. And his office was small and quiet — free of any distractions or intrusive noise.  He did a lot of talking during our meetings, and I worked on my short-term memory in the process, having extended discussions and finding that I could keep ideas in my mind longer and longer. I could mess up when I was talking to him — get confused, need clarification, thrash around in disorientation — and it never cost me, socially. He still welcomed me each week. He never made fun of me, he never teased me, he was never unkind to me on purpose. And when he made jokes and I completely missed them, he acted like it was his fault for not telling them well. During all those years, I worked on my interaction skills — learning how to actually talk to another real person (not a figment of my imagination), and get something out of it. He meant me no harm. It was completely non-threatening, and I made leaps and bounds in progress.

That, in itself, was worth a mountain of gold to me.

Even if he didn’t fully understand the exact nature of what I was dealing with, we were able to deal with the “meta” issues of my life — dealing with my issues as what they were, rather than what they were called.

  • Social anxiety — keeping myself from running away from social situations.
  • Self-talk and self-conceptions that were not only unhelpful, but also absolutely incorrect.
  • Difficulties with decision-making.
  • Difficulties with keeping steady in scary situations.
  • Challenges with workplace dynamics that confused me more than I ever let him know.
  • Memory issues — learning how to talk to people in ways that helped me remember what we’d started talking about, in the first place.
  • Sleep hygiene. Exercise. Nutrition. Supplementing the vitamins I lacked (especially Vitamin D3).
  • Interaction problems with the police, doctors, bosses, and other authority figures who could misinterpret my issues as aggression or insubordination.
  • And a slew of other challenges that come part and parcel with Asperger’s, as well as other conditions and situations.

I really did manage to cover a lot of territory and get a lot of help from him, even though I never pressed the AS diagnosis issue. To my mind, it was actually more helpful to address these things as what they essentially were — rather than fragments of a condition that precious few healthcare providers seemed to understand that well, anyway.

And in the process, while I never received formal help officially earmarked for Asperger’s, I think my approach actually worked better for me. I wasn’t constrained by the limits of knowledge about the autism spectrum. And I wasn’t declared “disabled” with a specific disorder. I had the best of both worlds — help from a seasoned professional, as well as a course of action that let me set my own path and focus on what I needed, rather than what was prescribed by an official diagnosis.

For someone as autonomous as me, it was worth every moment spent. And I think it worked much better than the official alternative.

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13 thoughts on “How to address your Asperger’s without ever saying the word

  1. How did you find out you were vitamin-deficient (especially Vitamin D3)? Had you been taking daily multivitamin tablets? I keep reading that they are unnecessary (for most people) but I also keep reading about vitamin deficiencies.

    Liked by 1 person

    1. VisualVox

      My doctor tested me, and I was low for several years in a row. She told me to supplement with vitamin D3, but she never explained why it was so important, so I didn’t do it regularly, until someone explained to me how much it can affect your cognitive function, as well as your genes. Apparently, it’s really necessary to properly reproduce most of our genes. But my GP never mentioned it. Maybe she didn’t realize.

      I’m still a little angry about that one. I was walking around in an unnecessary fog for years.

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      1. I’ve been having cognitive issues that I haven’t reported to my doctor because I don’t have physical symptoms. I’ve assumed my cognitive issues are age- or autism-related and thus untreatable (except perhaps with psychoactive medications which I don’t want). I’ve been tested recently for “Comprehensive Metabolic Panel”, “Lipid Profile”, “Iron Profile”, B12, and TSH and they are all normal.

        Would any of these tests have revealed vitamin deficiencies? Did you have any physical symptoms? If so, what were they?

        Liked by 1 person

      2. VisualVox

        I would ask the doctor for the lab results. I get all my lab results from my doctor(s) and review the results in detail.

        The Comprehensive Metabolic Panel might have it. Or get a CBC — Comprehensive Blood Count (with differential) – see https://labtestsonline.org/understanding/analytes/cbc/tab/test/ – has been recommended for me.

        I believe a Vitamin D test can be ordered separately, but it can sometimes require insurance justification, because it’s not cheap. The CBC is common. You might have better luck asking for a CBC.

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      3. VisualVox

        Oh, another thing – if you don’t want to prompt your doctor to prescribe meds you don’t want, you could just ask “out of curiosity” what your Vit D3 levels are, because you’re concerned about bone density. You don’t even have to get into the whole cognitive thing — my levels were checked because of bone density concerns.

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  2. I didn’t mention my CBC results because those ARE abnormal (consistently low WBC, high MCV, high MCH, and sometimes low Platelet Count) but those have been looked into by an oncologist who did a bone marrow scan (results were normal) and advised me to keep monitoring my CBC (which have remained steady). I also get all my lab results (and scrutinize them and keep track on a spreadsheet).

    I had my bone density measured several years ago and it was significantly better than average. Did you have any other symptoms?

    My doctor has been very good about ordering tests I request as long as I pay for them myself (as I have been) rather than billing my insurance (which has a high deductible and so wouldn’t pay anyway).

    Liked by 1 person

    1. VisualVox

      I had some bone density loss, but mostly it was foggy thinking and feeling blah all the time. It could have been a number of things, really, but one of my doctors saw the D levels and was alarmed. And rightfully so. It had been going on for years. As soon as I got my levels up, I felt so much better.

      For your insurance, paying those deductibles drops the amount you have to pay out of pocket. In your shoes, I’d submit all the bills to the insurance company and see what they will pay. It’s worth a shot – and even if they refuse, you’re no worse off than you are right now. If you pay out of pocket and then get reimbursed later, then your doc will not be blocked — and you might get some financial relief.

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  3. My local lab offers a 50% discount if you pay cash (without billing insurance). My annual deductible is $2500 and I never come close to meeting it.

    My local lab offers several vitamin D tests. The most common one is “Vitamin D, 25-HYDROXY” ($69 plus the blood draw fee). Is that the one you had? If not, is there another one you would recommend?

    Liked by 1 person

    1. VisualVox

      I’m not sure which one I got. But that sounds familiar. My doctor took care of all the details, but she’s passed on, so I can’t ask her 😦

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      1. If you get all your lab results from your doctors, can’t you simply review them? Or are they from too long ago?

        My mother (who lives in a retirement home and gets little sunlight) was prescribed cholecalciferol (vitamin D3) tablets after getting a low result for a VITAMIN D, 25-HYDROXY test, so there is both family history and evidence that this is the correct test.

        Liked by 1 person

      2. Do you remember (or can you check) what your Vitamin D was measured to be? Did you notice a cognitive difference after you started supplementing?

        My Vitamin D (25-OH) was measured to be 28 ng/mL, which my lab flagged as “SUBOPTIMAL” (20-29 ng/mL; “INSUFFICIENT” is <20, “OPTIMAL” is 30-100). I’ve been supplementing with 3000 IU/day of Vitamin D since.

        I have an appointment with my doctor this Friday (Aug 5). Can you think of anything I should as her?

        Thanks.

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      3. VisualVox

        I hovered in the low 20s for several years, then I dipped to 14. Yikes! That raised some eyebrows. After I supplemented with 3000-5000 IU/day for six months, my levels went up to 40, then a year later they were at 36, and this past February, they were at 48. I continue to supplement. I’m not sure what you should ask, other than if there are any mitigating factors in your life that might affect things. Possibly if you should be tested more frequently. My doctor just let my situation slide, even after years of seeing my levels were low. Since I wasn’t really blatant about the issues I was having (being autistic, and all), I think she figured I was fine. That seems to be a common phenomenon with doctors. If it’s not right in their face, they don’t react. Or even notice.

        Liked by 1 person

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