Lessons learned from adult diagnosis

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Hi, I am an adult female recently diagnosed with AS after other issues (depression, generalized anxiety, social anxiety, ADHD, and OCD) were ruled out. Through this process of working with a professional to tease apart the source of my traits and behaviors, I have learned a few lessons that I would like to share, in case they are helpful to other adults during their AS evaluations. For me, the goal was not to seek an AS diagnosis, but to understand and explain what was going on inside my mind, such that my processes of thinking, feeling, and perceiving could be matched up to my traits and behaviors, which could be matched up to an accurate diagnosis of AS, something else, or nothing at all.

First, we all know that being an adult is an automatic strike against an AS diagnosis in the mind of a therapist not specializing in ASD in adults. Being a woman is strike two. Being employed and/or married is strike three. Three strikes and you're out, if you're lucky. Three strikes and you're out with inaccurate labels and/or inappropriate medications, if you're unlucky. In my case, the label was social anxiety. During the whole time that the label was social anxiety, I believed that I had social anxiety. It wasn't until I joined a group for social anxiety did I realize that I didn't have social anxiety. None of the social anxiety experiences resonated with me, so I went home and clicked on the Wikipedia related link from SA to AS. That was when .

Here is one case of how I explained my thoughts, feelings, and perceptions, and how they helped my therapist shift her perception of me from SA to AS:

Case: Social Interaction Suckage

I explain my difficulties: I suck at socializing, particularly in small groups, such as at a party. I cannot keep up with the conversation, so I am silent most of the time. When I am not silent, I am interjecting oddball comments that bubble out of my mouth without passing through the To-Say-Or-Not-To-Say area of my brain. Awkward silence ensues before the others continue with their conversation. After spending fifteen minutes at the party, I am so exhausted that I have to leave, go home, and recover in front of my computer for the next three hours.

Therapist: 1) SA, or 2) This is normal. We all feel this way sometimes. We all feel awkward during social interactions sometimes, and we all feel exhausted after parties sometimes.

I explain what is going on inside my mind: When I am socializing in a group, I feel like Homer Simpson. After one or two awkward back-and-forths, I feel like my mind has shut down completely. I feel like I am no longer processing any information through any channel. I see their mouths moving, but I can't hear or process a word that they are saying. My head is snapping back and forth amongst the people in the group during their incomprehensible rapidfire exchanges. There is not a single gap in the conversation for me to say anything. Not that I have anything to say, except the random thought that pops into my mind about freezing poop in liquid nitrogen and launching it into the neighbor's swimming pool. Either my auditory processing center has shut down, or my entire brain has shut down, except for the Psych-O-Matic Module that generates the poop comments. Either I have no clue what they have been talking about for the past five minutes, or I cannot generate and contribute a relevant comment. I call this "Homer Simpson Syndrome". During it, my IQ drops 100 points. Correction! Even Homer Simpson has monkeys playing cymbals in his head sometimes. I don't even have that. This is more like a BSoD. Yes, like when you try to run PhotoShop on your old clunky computer, and the computer crashes with the Blue Screen of Death. During social interactions, my brain is like the old clunky computer, and the gigantic social software is like PhotoShop. Does not process. Does not compute. BSoD! This does not only happen when I am tired or uninterested, but during all social interactions of this type, even when I want to be there to meet people and make friends. Have you ever had this experience? It might be like how you would feel if you were forced to memorize baseball statistics for three hours, then drilled on them by a Dementor. That would be easy for me, but I have a lot of difficulty with this.

Therapist: Whoa! I have never heard this before! This is not normal! Could it be that you are not normal, nor do you have social anxiety?

I match up the inside to the outside: Indeed I behave like someone with social anxiety, and I fail at social interactions in a similar manner, but the internal mechanisms are completely different. I don't really have any self-defeating thoughts, nor do I feel anxious or scared. I don't really have any thoughts or feelings at all. It might be similar to what is going on inside the mind of an autistic person who is having difficulty processing and integrating a lot of information through multiple channels at once.

Therapist: You don't look and sound autistic, but what you are describing inside your mind does suggest a divergent neurology.

Time is up. I leave.

Therapist mulls it over: What she has described is very interesting. Also very interesting is the way she described it. Detailed, explicit. Strange analogies, but they make sense and are highly relatable. Especially when she turned the tables on me with the baseball statistics. AS is something to consider.

Next appointment: We discuss AS and nothing else.

Eventually: Enough inside is matched up to outside to make an AS diagnosis.

Oops, this post has gotten way too long, but I wanted to give a semi-thorough account of how we targeted AS and eliminated other issues. When I thought that I had SA, I focused on the external issues. When that stopped making sense, I focused on the internal issues. That helped my therapist make an accurate diagnosis. Have any of you taken a similar approach? Were your therapists understanding? This worked well for me, both to understand what was going on inside my mind and to explain it to other people, not just the therapist, but my family and friends as well. I am not good at explaining myself otherwise. Most therapists are not autistic, so they do not have an accurate theory of our minds, nor do they have the natural ability to empathize with us, nor can they intuit how we think and feel and perceive, so I don't see why we shouldn't just come out and tell them. Of course, this exact analyzing, synthesizing, and lecturing behavior is a ball for AS and a strike against SA in an inning to differentiate the two. Sorry, couldn't resist with the baseball analogies.

This was one of many examples of this approach. Others had to do with eliminating ADHD and OCD. I'll post those some other time, after I get back from my latest batch of baseball statistics.

What are your preferred names for "Homer Simpson Syndrome" and "BSoD"?

Very true. I'm reminded of the scene from "Annie" where Grace brings Mr. Warbucks Annie, since he asked for an orphan, and he proclaims that she isn't an orphan because "Orphans are little boys!"

Hi,

I was diagnosed as an adult too. It is strange because so much of the material is on children and not adults. And I came to the diagnosis after consulting therapists about other problems: depression and intermittent-explosive-disorder. In my case it was a stray question: "Do I have a touch of Asperger's?" that led to the diagnosis. Like you, the fact that I had a job and was married with a child didn't fit the stereotypes (at least I was male).

When I am involved in social situations I survive by getting into discussions of a single topic with others. Apparently this is not how to act because I get criticized by my wife about it. I have this silly idea that people should talk about what they are interested in. Since I don't do well in social situations, I just avoid them.

I love the images of Blue Screen of Death and Homer Simpson. I just try to develop rules about what not to say and what not to talk about.

I've seen a number of psychiatrists and a few psychologists. The first few diagnosed me with SAD. My current psychiatrist diagnosed me initially with GAD. He slowly realized that I may be on the lower end of the spectrum after spending 1 year in therapy with me. I still have problems at work despite medication (Lexapro). Below is one summary I had prepared for him among about 2-3 papers/session. I have weekly/bi-weekly sessions. He rarely read them because if he did, I would have spent all my time talking about the papers. I kind treat myself as on object.


Major Difficulties in Pharmacy:

Work tasks:
1. Mental shutdown response (going “blank”) to conflicting demands and multi-tasking as feel overwhelmed with such multi-tasking especially when people waiting for prescription.
2. Mind going blank with pressure/switching tasks; upset/lost when task is disrupted and difficulty going back, finding/remembering where I left off.
3. Problems switching attention as have compulsion to finish one task before going to the next (hyper-focus) as prefer to work uninterrupted (no phone, no counselling, no noise when I’m checking prescriptions) until one task is finished.
4. Anxious/mind going blank when feeling rushed and generalized confusion during periods of stress.
5. Forgetful and forget order of tasks: I can’t remember previous day’s activities whereas others can.
6. Difficulty listening, talking and writing orders (trouble doing both at the same time).
7. Difficulty in offering correction or criticism without appearing harsh or insensitive
8. "Immature" manner-saying childish things
9. Difficulty with organizing and sequencing tasks (planning and execution; successful performance of tasks in a logical, functional order).
10. Great concern about order and appearance of personal work area. Get lost when work area is cluttered.
11. Reliance on internal speech process to "talk" oneself through a task or procedure.
12. Stress, frustration and anger reaction to interruptions.
13. Very low level of assertiveness.
14. Vulnerable or less able to resist harassment and badgering by others.
15. Difficulty in handling relationships with authority figures.

Sensory Issues:
1. Startled by phone ringing or entrance bell, customers/patients.
2. Difficulty filtering out noise/distractions when counting pills, cognitive tasks, listening to people on the phone.
3. Distractibility due to focus on external or internal sensations, thoughts, and/or sensory input
4. Misophonia-certain noises staff makes enrages me.

Social/Performance Anxiety/Emotional Issues:
1. Oral communication: gaps in speech, thoughts/verbal delay; trouble feeling gaps when counselling, finishing conversation, chit-chating but better if it’s something I’m interested in (exercise, psychotropics, etc.).
2. Self-focus on performance as lacking confidence?
3. Slow to think/making decisions: require more time to make decisions, better at recognition vs recall, visual/written vs verbal.
4. Can’t remember patient’s names/histories (I’m conscious of the fact that people get offended/angry by it).
5. Difficulty understanding phone conversations and leads to anxious-cycle: scared when phone rings because I have trouble understanding what the person is saying as they talk really fast and then I get anxious and then it makes me get more confused and if I pick up any anger, I get scared they will yell at me.
6. Difficulty with reciprocal displays of pleasantries and greetings, eye contact, chit-chat.
7. Problems expressing empathy or comfort to/with others: sadness, condolences, congratulations, etc. -death, cancer patients
8. Pouting, ruminating, fixating on bad experiences with people or events for an inordinate length of time.
9. Difficulty expressing anger (excessive or "bottled up")
10. Elevated voice volume during periods of stress and frustration and/or walking around without any concern about anything or anybody around me when I’m concentrating on a task
11. Difficulty in accepting compliments, often responding with self-deprecatory language (self-criticism/humour)

Nice post! Thanks.

I know what you mean about small groups... well, big groups can be stressful too. The small groups that I did well in were games... board games. There's not much eye contact (except Bridge, and I never liked it). I liked backgammon and dominoes. They have their own language game talk... your hands are busy.

The Homer Simpson Syndrome........I think I'd call that "shutdown." It's very common with Aspies. I get it myself, the mind goes blank when overloaded with stress and impossible demands. I heard somebody talk about "brain cramp" once.

I didn't really go about the DX like you did.......I did the online tests before I knew anything much about AS, so I had quite a bit of faith in the results (if I'd known what the traits are, I'd have thought I might be cheating)......then I got a diagnostician who just stuck to the question "AS or not AS?"........so we never really started with the question "what's wrong with me?" I did consider one diagnostician who wanted to test me for everything, but I decided against it because I didn't particularly trust him (thought he might be creating unnecessary paid work for himself at my expense), though in an ideal world it would have been better to go that way. Nonetheless, my diagnostician said that she couldn't see anything else wrong with me apart from AS.

Must say your literary style looks Aspie to me. It's more intellectual that I'd expect from a neurotypical woman, though I'm no expert.

I haven't posted in quite a while - but interesting parallels with my unsuccessful attempt for a diagnosis that makes sense. I can relate to how you describe your internal workings - and when I started looking into my difficulties and shortcomings, I was single, in my early 40s, highly stressed, having difficulties at work, and headed for a breakdown (something I knew was happening because I had previous had that experience in college). So I underwent cognitive, educational, and psychological testing. The outcome of the educational testing was being told that I am non-verbally smart (high performance IQ), but that I have weaknesses in working memory, processing speed, and significant gaps between my highest and lowest areas of academic testing. Unofficially I could be considered to be "twice-exceptional." The outcome of the psychological/ASD testing, performed at a university autism center were diagnoses for Social Anxiety, Dysthymia (low-grade, long-term depression), and Panic Disorder. Those diagnoses are accurate in that I experience those difficulties sometimes, but not all of the time - if I am away from lots of new people who I have to "figure out" I'm fine - but those diagnoses don't begin to address what I believe are the underlying causes, and I stopped pursuing a diagnosis.

I ended up quitting my job and starting my own business, and getting married nearly two years later. Several people have mentioned that my wife has found her "Mr. Darcy" (character of Jane Austin's who some have recently analyzed as having Asperger's). I'm very happy, am able to work independently much of the time, and able to better pace my interactions with others.

I'm happy for you, btbnnyr, for getting a diagnosis that helps you to understand yourself - which was the same motivation that I had in my pursuit of a diagnosis.

Z

I live in a rural area and while we have a fairly good mental health facility in the area, they are really more geared towards treating more common problems like drug addiction, depression, bi-polar disorder, etc. My therapist basically told me she didn't have the expertise to diagnose AS and nobody at their facility did either. Children with suspected autism were referred to a hospital in a larger city, but even there they don't really handle adults with AS. Nevertheless, as I have had more conversations with her, I think I've convinced her I do have this by explaining the symptoms and how this matches my internal and external experience. Ultimately, it is the best explanation for the frustration and life difficulties that have turned into the nightmarish depressions that I first sought treatment for.

My social coping skills are more or less based on a couple of principles. I analyze the person to know what their values and background is likely to be. I use whatever memorized scripts I have to respond to the usual topics of my work, sports, politics, where I live, why I'm not married at my age, etc. I ask lots of questions and let the other person talk as much as possible so they can steer the conversation, I can usually think up a few short responses even if they aren't on a familiar topic. My great limitation is that I really have to focus on one person at a time. I have to tune everything else out and deal with one person at once. Group conversations I tend to keep silent and focus on listening for relevant information in case the focus turns to me for one reason or another. Otherwise I just play the wallflower and fade into the background.

I will never have the diagnosis because I will never have the money to get the insurance to go to the professionals because I will never be able to hold down the job because I have the symptoms.

An.

Oroborus.

I'm trying to develop these too. I was extremely oblivious and unaware until the past year (I'm 30), so I have a lot of catching up to do. One of the therapists said that I needed to ease into social interactions instead of geysering inanities right away. I'm sure this is not the same thing as intermittent-explosive disorder, which I don't know anything about, but doesn't this phenomenon sound like the name? Like Old Faithful going off, except on an erratic schedule.

When I started out, I actually had two strikes against me, so the therapist was slightly less biased against AS. I didn't fit the criteria of "employed and/or married", which matches up with the "clinically significant impairment in functioning" criteria from the DSM, but a lot of people on WP do fit all three criteria and are still just as autistic as someone who has more obviously "failed", such as myself. I had a lot of problems in grad school that built up until I had to leave. I actually thought I was going crazy for awhile. Now that I have established my sanity, I'm hoping to go back to school with a set of coping mechanisms. I was no less autistic before my "clinically significant impairment" than after.



Yeah, I am even more obvious in writing than I am in real life.



And I thought I was the only one who thought this!



Me too. In fact, I have to focus on only one channel at a time. If I look at someone's face, I can't understand what they're saying. All of my memories are like this. If I try to remember what someone said and I focus on their face, their mouths are moving, and no sound is coming out. I have to shift the memory to the third person perspective to recall what people said to me, even one-on-one. All visual information is recalled from first person, and all auditory information from third person.



This is probably why they often peg people into one of the more common problems after only a few sessions. They automatically assume that adults are not AS. This could end up confusing a person for years. I was confused for several months, but it could have gone on much longer than that if I had continued to have total faith in the professionals, like I did when I started.

I've tried multiple times to get a DX. Unfortunately, the way I look gets in the way. I am perceived as being normal. All I can hope for is someone who actually has some understanding of Aspergers. I know myself well enough to know I have never been normal. I've observed normal behavior & it's not something I can even mimic. I have another appt coming up with another shrink next month. I hope for once & for all she can see that I have plenty of issues. I do not know how or understand the basics of socialization...this is something I never learned at home nor did I learn it in school. I was too busy trying to survive in an abusive/bullied situation & as such there was no real time to learn social skills. The older I've become the odder I am. There's no other logical explanation for my lack of fitting in. I do poorly in all kinds of settings outside clinical/classroom environments...work, shopping, anything where I am required to interact with other people. it even affects me over the phone.