ASD Assessment Time

[zozie]

Today I had a 2-hour phone interview with my assessor to gather a clinical history and I feel like I forgot a lot of important things. Tomorrow I have a 4-hour in-person assessment, with the assessor talking to my mother for a more detailed early-childhood history. I hope the assessor calls her for information, since I have only a little bit from one baby book.

My brain is fried. I'm worried that I'll be seen as just weird or broken, despite learning today that my father is an aspie but never thought to mention it ("because you just dealt with it -- no one back then ever considered accommodating a 35-year-old man, they just helped you in special ed when you were a child"), and my uncle on my mother's side is also an aspie. So at least it is established that it runs in the family.

Did any of you, especially older women, fear being misdiagnosed by your ASD assessor? I'm genuinely worried that I'll have missed one or two really important details and that will mess up the whole thing.

And I know I shouldn't be concerned necessarily that my assessor sounds like she's 25 and has very little clue how autism was perceived and handled in the 80s and 90s, but I sort of am. I want to give her the benefit of the doubt. It's just... what if I'm not seen?

 

[Streetwise]

They assess by guidelines if they are doing what you said, that depends on the year they were published.

That's why they ask about early childhood and look at records for instance I apply for the ironically sickly named welfare benefits, I'm only asked about the last 3 months in the uk,the 1980s-1990s law and guidelines only apply if they didn't change,one benefit of a youthful assessor they are quite often not as negative.
I was more certain theyd say borderline personality disorder ,had no idea there was a pigeonhole of ASD1.

 

[zozie]

They assess by guidelines if they are doing what you said, that depends on the year they were published.

That's why they ask about early childhood and look at records for instance I apply for the ironically sickly named welfare benefits, I'm only asked about the last 3 months in the uk,the 1980s-1990s law and guidelines only apply if they didn't change,one benefit of a youthful assessor they are quite often not as negative.
I was more certain theyd say borderline personality disorder ,had no idea there was a pigeonhole of ASD1.

What do you mean by "pigeonhole"?

 

[Soleil]

Did any of you, especially older women, fear being misdiagnosed by your ASD assessor? I'm genuinely worried that I'll have missed one or two really important details and that will mess up the whole thing.

I had an initial interview last month, and I forgot a bunch of things too, that I'm sure would have made it more clear. I'm definitely worried that I may get misdiagnosed (I'm not an "older" woman though) so hopefully I'll remember more next time...

 

[Finder]

Just take one assessment at a time. Technically, this is not something you can study for: you need to be a born natural, so to speak. Their job to to ask the right questions and figure out the issue.

 

[Alexej]

I feel like I forgot a lot of important things.

It might be an idea to write down the things that you felt were forgotten. This is an Aspie behaviour by the way.

 

[Progster]

I was more afraid that they would say that there's nothing wrong with me, and that I'm imagining the symptoms or reading about them and then finding ways to make them fit me.

After the assessment, I was worried about it's accuracy, as it was very brief in comparison to assessments that others were getting. Yours seems longer and more thorough.

 

[Streetwise]

What do you mean by "pigeonhole"?

They say based on what observation that I'm ASD1 that is! what I would need to function as a robot ,like saying if you have aids you could only catch it if you were at that time either heterosexual not using a condom or homosexual not using a condom ,when researchers couldn't say definitively what caused A.I.D.S,,then oh !a blood transfusion can transmit it, oh no the pigeonhole didn't work, maybe neurodiverse people aren't inferior

 

[zozie]

I was more afraid that they would say that there's nothing wrong with me, and that I'm imagining the symptoms or reading about them and then finding ways to make them fit me.

After the assessment, I was worried about it's accuracy, as it was very brief in comparison to assessments that others were getting. Yours seems longer and more thorough.

This is my fear as well. And now that I've had a chance to sleep on my conversation with my parents, my self-identifying aspie father says his brother is the same way as him, and his mother. And so now I have it on both sides of the family, but totally overlooked because my mother takes a "just adapt" view of aspergers.

Truth be told, I am quite upset because I am having to dig through childhood experiences I have not given a second thought and educate my mother at the same time. And I didn't even know it was even a thing to not show pain on your face. I didn't even show pain when I was giving birth. My mom says it looked like I was sleeping.

So yeah. To hear after giving my clinical history that it was considered odd but not alarming to not show pain, to wander off into deserts and mountains by myself, to have "the opposite of stranger danger" and to get run over by an RV when I was 4 (I was not seriously hurt, so it was just one of those family stories), to be a baby and forgotten at home when the family went to a movie...there are days when I wish it was just way more obvious. But my face doesn't do that. So people think I'm fine.

 

[zozie]

It might be an idea to write down the things that you felt were forgotten. This is an Aspie behaviour by the way.

I did write them down, and it ended up being quite a long list. And I didn't know this was aspie behavior, I thought it was just ineptitude. Good to know.

 

[zozie]

They say based on what a neurotypical observes that I'm ASD1 that is! what I would need to function as a neurotypical robot ,like saying if you have aids you could only catch it if you were at that time either heterosexual not using a condom or homosexual not using a condom ,when researchers couldn't say definitively what caused A.I.D.S,,then oh !a blood transfusion can transmit it, oh no the pigeonhole didn't work, we are not superior, maybe neurodiverse people aren't inferior

I see what you mean. My parents both seemed really surprised that autism is genetic. I guess that's why they didn't tell me about my dad and my uncles and my grandmother (only one of those is officially diagnosed, though another is self-identifying).

 

[zozie]

The assessment itself is fully done and it was a combination of IQ, AQ, some other questionnaires, some recall and storytelling, and general questions I've heard are asked, like "what does it mean to be a friend"? and so on. I will find out my results on the 18th. They will also contact my mother for a history of my childhood development. I am sick to my stomach at the thought of waiting but there's nothing to be done.

 

[Finder]

Congrats about finishing up.

I am not sure we have the same reaction, but I felt like I was doing something wrong and faking my ASD, like I was creating on a test, even though I have never created on a test--totally irrational, but there you have it. The reality is they don't want to deny you a diagnosis. There is no incentive to do that. They just need to make sure you are getting the correct one--a misdiagnosis is always worse.

You will be fine.

 

[zozie]

Congrats about finishing up.

I am not sure we have the same reaction, but I felt like I was doing something wrong and faking my ASD, like I was creating on a test, even though I have never created on a test--totally irrational, but there you have it. The reality is they don't want to deny you a diagnosis. There is no incentive to do that. They just need to make sure you are getting the correct one--a misdiagnosis is always worse.

You will be fine.

I did have that reaction, actually. And as I'm sure you know, you're not the first person to feel that way. Funny how we feel like we're somehow faking.

I really appreciate your perspective on the assessors having no incentive to deny diagnosis. I hadn't thought of it like that. I heard once that you can apply for disability with an ASD diagnosis so the process was to screen people who would just take advantage of the system. Though why anyone would pretend to be autistic is beyond me. So thank you for a different view.

 

[Finder]

Though why anyone would pretend to be autistic is beyond me. So thank you for a different view.

And since ASD requires evidence of autism in childhood, it is probably not an ideal condition to choose if you are simply trying to take advantage of public benefits.

I think the hardest thing for me to learn is self acceptance. To simply say it is OK to be autistic. It is OK to ask for help. A lifetime of bullying has made me doubt myself to the point I automatically assume others will doubt me too. That has been a hard way to live and I am not sure I have the energy for it anymore.

 

[zozie]

Well, update. I learned from my mother that I was a preternaturally "good" baby. Aside from a totally neutral face and disinclination to socialize, gesture, ask for help, and initiate play, I never had any tantrums that my mother recalls. Like, ever. I mean yeah, I had some weird quirks, like rocking my body at night to get to sleep (still do this) and sucking my thumb until my dad made me stop at around 9 or 10, wandering off in fields and such by myself at age 5, but yeah. My mother was grateful that I was so well-behaved.

The assessor said that she needed more information after 2 hours of clinical interview and 4 hours of in-person testing and a history from my mother. So I had 700 True/False questions to answer that I noticed followed the whole gamut of DSM-V diagnoses.

My mother believed I was never in distress. I have meltdowns, they're just private. And honestly, I was basically left to my own devices as a toddler, so I don't remember distress. I remember I would get myself into situations where i'd be injured and my face never changed, but I don't remember distress. So. I have a lot of trouble communicating distress.

Yeah. Just a big old mystery over here. To other people, at least.

I am in despair. *she says with a neutral face* And people just don't see it.

 

[SDRSpark]

These are my fears if I ever go for an assessment (I'm self identified). Both my parents are deceased, so it's really going to be almost impossible to get childhood history - that may just disqualify me entirely depending on the assessor. They'd have to rely on my memory, and maybe my grandmother's (but I don't know how much she remembers, and she's not getting any younger either).

I also feel that, having researched autism (and other mental and neurological conditions) at length on my own for years, and fairly consistently for the past two years, I might just be "acting autistic" and have learned enough to fool an assessor - I know that's ridiculous, but I'm always going to kind of wonder about it.

 

[zozie]

You know, my therapist remarked today, "most people don't read the DSM-V before or after getting assessed. Most people just go in and answer the questions and say, 'okay, this is what I got'". I wanted to scream but could not, but I did manage to have tears and my voice shook.

The fact that I recognized so many diagnoses amid the 700 questions reflects a similar fear of "faking it". Relying on memory alone, I saw Borderline Personality Disorder, Bipolar Disorders, Major Depressive Disorders, OCD, Narcissistic Personality Disorder, ADHD, Schizophrenia and psychosis, and of course Autism Spectrum Disorder. Later, I'd add several more to the list after I'd actually read through the DSM-V. (I skimmed through large portions but I read the other ones in depth).

And I don't think your fear is ridiculous at all.

It felt near impossible to divorce myself from what I had researched, but I held fast to the feeling of "this fits" when I'd first learned about autism. It was the same as when I first read about Complex PTSD, which I also had to advocate for before being seen by a trauma therapist who recognized the condition. So yeah, your fear is mine as well, and certainly one I am afraid the assessor will misattribute as pretense during the assessment.

It does seem, however, that even in assessments I am unable to express the level of distress that I feel. My therapist today mentioned our weekly assessment and how my levels were no higher in stress than they were pre-autism screening, and he'd expected them to be much higher. They were, but you wouldn't know it based on my score. I feel gaslit and crazy by this discrepancy.

 

[SDRSpark]

The closest I ever got to a diagnosis was a neuropsych telling me "you have traits of autism but you're too high functioning for a diagnosis." That drove me nuts. I too have/had difficulty conveying the level of disruption this causes to my life (at the time that I was working with her though, I had difficulty understanding it myself).

I have suspected for over a decade that I'm autistic. I have suspected for even longer that I had some sort of learning disability that went unrecognized - I'm brilliant (gifted actually) but I just didn't learn the same way I was expected to. (I now know that it's autism and likely ADHD.)

The thing about autism (especially among those with higher IQs and doubly especially among women) is that traits of it look an awful lot like other things - there are shared traits in multiple diagnoses. There are also the growing issues such as anxiety and depression that stem from trying to live as an autistic person in a world that doesn't recognize your needs (and you likely spent a long period of time not recognizing them yourself). That causes a constant low-level trauma (or maybe not so low-level when common issues such as bullying come into play) that tends to lead to other issues over time.

Weirdly enough, the same neuropsych that told me I had traits but was "too high functioning for a diagnosis" diagnosed me with OCD instead - and I spent plenty of time reading the DSM, reading articles online, talking to people, trying to figure out how that diagnosis fit me. The conclusion I eventually had to come to is that it's most likely wrong, as I have to twist the diagnostic criteria to make it fit my life. I haven't totally disowned the diagnosis though, just because sometimes I need something to explain things (actually, I should never feel pressured to "explain" my thoughts/actions, but I digress) and that's the best thing I have (on paper, anyway). So now "OCD" has become a diagnosis of convenience, even though it's actually in my medical records.

 

[zozie]

The closest I ever got to a diagnosis was a neuropsych telling me "you have traits of autism but you're too high functioning for a diagnosis." That drove me nuts. I too have/had difficulty conveying the level of disruption this causes to my life (at the time that I was working with her though, I had difficulty understanding it myself).

I have suspected for over a decade that I'm autistic. I have suspected for even longer that I had some sort of learning disability that went unrecognized - I'm brilliant (gifted actually) but I just didn't learn the same way I was expected to. (I now know that it's autism and likely ADHD.)

The thing about autism (especially among those with higher IQs and doubly especially among women) is that traits of it look an awful lot like other things - there are shared traits in multiple diagnoses. There are also the growing issues such as anxiety and depression that stem from trying to live as an autistic person in a world that doesn't recognize your needs (and you likely spent a long period of time not recognizing them yourself).

That sounds incredibly frustrating

If nothing else (and I hope there is more to the "else") I have learned that when I self-report through assessments, I do not do justice to my distress. So even some types of written communication, such as a provided list of options, leave me muted. In the event that I need to seek out a second opinion, I will say this much at the outset. Though I suppose saying this throws the dataset into doubt, so I don't know if an assessor will be please to hear my insights.

That label "high functioning" or "too high functioning" makes me want to bang my head against a wall. "Too adaptable to be noticed" seems somewhat more fitting, though it still does not address the level of distress.

What I dread is people who will say, "Yeah I didn't think you were autistic" and basically validate themselves at me. I don't know what I will do then, other than shut down completely.

How do you handle your certainty of self-diagnosis with a document that disagrees?