ASD Assessment Time

[SDRSpark]

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?

The last time I saw any sort of mental health professional was years ago, and I didn't even understand what was going on myself - I was experiencing a bunch of things that I didn't realize weren't normal experiences - I thought my problem was that things were more difficult for me to experience than they were for others, not that others genuinely didn't have those experiences in the first place. (This is especially notable with sensory issues - I wondered how people didn't react the way I did without realizing that they genuinely weren't having the same experience. As a result I thought I was "weak" because I couldn't handle it. I hadn't considered that others weren't experiencing the same thing, and if they were, they would react the same way.)

As for how I handle not having a professional diagnosis of autism (and a string of other diagnoses that are wrong and at some points have done far more harm than good) - it's so blatantly obvious at this point that I'm autistic (and have been my entire life...looking back at my childhood I keep thinking "How did they miss THAT?") that there's really no questioning it. The sky is blue (duh) and I'm autistic. I've also come to the conclusion that it really doesn't matter if I have a professional diagnosis or not - a professional diagnosis isn't going to open a lot of doors for me; it will give me more credibility in certain discussions, but credibility isn't important enough for me to go through the arduous process (and pay a large amount of money) to get a professional diagnosis. Going through years of waiting, hours of evaluations and possibly thousands of dollars just isn't worth it to win an argument.

The autistic community has been totally awesome about making the resources that I really need (knowledge and community) freely available, thereby removing the need to involve professionals and their opinions for most things. My main frustration at this point is that I wasn't diagnosed much sooner because I could have had these things earlier (possibly - in some ways, when I was a child/teenager that knowledge and community didn't exist to begin with, so it's entirely possible I would not have had access to it regardless).

People didn't want to "label" me or "pathologize" me, without understanding that if I wasn't autistic, I got to be all sorts of other things (weak, lazy, dramatic, psychotic, crazy, "no people skills") and that, not being permitted to have answers from good, solid sources I sought them from other places which were not very good or helpful at all and exacerbated all of the things that caused me so much trouble in the first place, as well as causing other problems. Because I have always been searching for answers, that's something I don't think I'll ever be able to stop doing. (There's an incredibly frustrating thing that goes along with this if I say I'm autistic or explain my autistic traits in certain circles - people immediately start trying to make me feel better about them, or talk me out of them, or tell me "it's not anything to worry about" etc. I know these people mean the best, but it really sounds like "don't worry, being you isn't a bad thing!" and that's just downright offensive.)

Probably one of the best things I've learned how to do (and at times I am still working on this...practice makes perfect!) is to roll my eyes, shake my head and move on with life, having decided that the person speaking has no clue what they're talking about when they start with that crap. Because I know who I am and what I need...and oftentimes it's up to me to make that happen because, as much as I really want to be understood by those close to me (and it freaking HURTS when the people I care most about don't understand me!) there's a good chance they never will, and I have to make peace with that.

 

[zozie]

The last time I saw any sort of mental health professional was years ago, and I didn't even understand what was going on myself - I was experiencing a bunch of things that I didn't realize weren't normal experiences - I thought my problem was that things were more difficult for me to experience than they were for others, not that others genuinely didn't have those experiences in the first place. (This is especially notable with sensory issues - I wondered how people didn't react the way I did without realizing that they genuinely weren't having the same experience. As a result I thought I was "weak" because I couldn't handle it. I hadn't considered that others weren't experiencing the same thing, and if they were, they would react the same way.)

As for how I handle not having a professional diagnosis of autism (and a string of other diagnoses that are wrong and at some points have done far more harm than good) - it's so blatantly obvious at this point that I'm autistic (and have been my entire life...looking back at my childhood I keep thinking "How did they miss THAT?") that there's really no questioning it. The sky is blue (duh) and I'm autistic. I've also come to the conclusion that it really doesn't matter if I have a professional diagnosis or not - a professional diagnosis isn't going to open a lot of doors for me; it will give me more credibility in certain discussions, but credibility isn't important enough for me to go through the arduous process (and pay a large amount of money) to get a professional diagnosis. Going through years of waiting, hours of evaluations and possibly thousands of dollars just isn't worth it to win an argument.

The autistic community has been totally awesome about making the resources that I really need (knowledge and community) freely available, thereby removing the need to involve professionals and their opinions for most things. My main frustration at this point is that I wasn't diagnosed much sooner because I could have had these things earlier (possibly - in some ways, when I was a child/teenager that knowledge and community didn't exist to begin with, so it's entirely possible I would not have had access to it regardless).

People didn't want to "label" me or "pathologize" me, without understanding that if I wasn't autistic, I got to be all sorts of other things (weak, lazy, dramatic, psychotic, crazy, "no people skills") and that, not being permitted to have answers from good, solid sources I sought them from other places which were not very good or helpful at all and exacerbated all of the things that caused me so much trouble in the first place, as well as causing other problems. Because I have always been searching for answers, that's something I don't think I'll ever be able to stop doing. (There's an incredibly frustrating thing that goes along with this if I say I'm autistic or explain my autistic traits in certain circles - people immediately start trying to make me feel better about them, or talk me out of them, or tell me "it's not anything to worry about" etc. I know these people mean the best, but it really sounds like "don't worry, being you isn't a bad thing!" and that's just downright offensive.)

Probably one of the best things I've learned how to do (and at times I am still working on this...practice makes perfect!) is to roll my eyes, shake my head and move on with life, having decided that the person speaking has no clue what they're talking about when they start with that crap. Because I know who I am and what I need...and oftentimes it's up to me to make that happen because, as much as I really want to be understood by those close to me (and it freaking HURTS when the people I care most about don't understand me!) there's a good chance they never will, and I have to make peace with that.

I agree that knowledge and community have been a total game changer. And insights like "How did they miss THAT?" are also accompanied by, like you said, "Wow, it's not like that for other people?"

I've found this out in very indirect (but still profound) ways. Like when I put earplugs in at work to mute ambient sound. It's not like my ears were hurting before. I mean I was fried every day after work, but I figured I was just tired. When I put earplugs in, the lack of total exhaustion was a real revelation. Same with eye contact. I used to stare when listening and then feel stuffed with people or very uncomfortably intimate with people, but I thought that this was just me being resistant to vulnerability. Now I don't make eye contact and I am not stuffed with people nor do I feel uncomfortably intimate with them. In fact, greater levels of personal vulnerability are accessible because I am less overwhelmed. (Wow, I just realized that, and wonder quite a bit if reduced eye contact is what has enabled me to express more vulnerability in person with my therapist.)

I will (eventually, probably) conclude that if I'm found to have some other disorder, then I have both underreported my distress and the assessor has missed something that is obvious to me. And ditto on the unhelpful comments. They are indeed insulting and patronizing. The erasure is unbearable.

However, as time goes by I hope I will become more at peace with my own "the sky is blue and I'm autistic" understanding. I was so excited when I first came across it, even though I was initially skeptical. And the thought of being able to finally address things that are difficult was so uplifting. Perhaps I will get to the point where I know what I need. I'm still working on it.

 

[VictorR]

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).

That's an interesting remark from the assessor. In my case, there were several separate batteries administered to see if there was anything else going on, but they came back negative.

 

[Finder]

I'm kind of afraid to say what my experience was. I called the local psychiatric clinic and asked for someone that could give an adult ASD diagnosis. I waited 5 months for the appointment. The diagnosis took about one hour of conversation. I did not have a test, but simply the doc went through the DSM-V criteria. I had done some research with school records and I had interviewed my mom for early childhood signs so I could give that information. At the end of the hour, he simply said I had ASD.

I can't tell if I am happy it was so easy or upset that I did not get the full course.

 

[Progster]

I'm kind of afraid to say what my experience was. I called the local psychiatric clinic and asked for someone that could give an adult ASD diagnosis. I waited 5 months for the appointment. The diagnosis took about one hour of conversation. I did not have a test, but simply the doc went through the DSM-V criteria. I had done some research with school records and I had interviewed my mom for early childhood signs so I could give that information. At the end of the hour, he simply said I had ASD.

I can't tell if I am happy it was so easy or upset that I did not get the full course.

Mine was similar, and I did worry about the thoroughness of it after reading the experiences of others who had had more lengthy testing. My mum was present at the interview and he asked her some questions, too. I just had to put my faith in his experience and judgement.

 

[Streetwise]

I'm kind of afraid to say what my experience was. I called the local psychiatric clinic and asked for someone that could give an adult ASD diagnosis. I waited 5 months for the appointment. The diagnosis took about one hour of conversation. I did not have a test, but simply the doc went through the DSM-V criteria. I had done some research with school records and I had interviewed my mom for early childhood signs so I could give that information. At the end of the hour, he simply said I had ASD.

I can't tell if I am happy it was so easy or upset that I did not get the full course.

Believe me I waited 30 mins longer than you and I just wanted them to send me a letter saying what the gp had diagnosed ,I waited 5 months and 45 years before that,more questions just gets my adrenal glands more exhausted .

 

[zozie]

I guess where I live, autism isn't assessed alone, but within a full psychological profile. ADHD is assessed in a shorter process. But I have a couple of people I know who have decided that going through the criteria with their therapist is enough. I'm of the mind that a short interview is better if you're sure and a long process is better if you suspect other things. For me, while I have marked improvement in my CPTSD, I know it's co-morbid. I did the legwork of teasing apart CPTSD and ASD characteristics/symptoms, but others might not. Even so, I would have preferred a short interview.

But, I am in the Voc Rehab program so the most official process is the best one, and if that means a long interview, then so be it. It's just really, really nervewracking and exhausting.

 

[zozie]

Update:

Two more assessment questionnaires. I'm starting to doubt this whole process, and myself.

 

[Finder]

It is OK. Let the process play out. The new assessments could simply be honing into things for clarity.

 

[zozie]

I am working on it, I am. I really am. I am confused as to why I keep getting tested for personality disorders, and have even gone so far as to research if it's possible to fake autism (and not know it, I am not doing this on purpose), the same way a person scratches their head when someone next to them mentions lice. "Faking it" doesn't match with my early childhood behaviors, but still.

Honestly, I'm glad it's over. I wish I could have had more autism questionnaires, the questions feel so much more relevant to my experience. I wish I could be calmer about this whole thing.

And anyone who has persisted in reading my anxious ramblings, I appreciate it so much.

 

[Finder]

I also had/have a lot of self doubt, even after my diagnosis. I don't know whether that is a feature of ASD or simply a reaction to a lifetime of people doubting me. But fears are not reality. IRL, I am an analyst. What is the incentive for them to not give you a diagnosis if you are autistic? Who does that help? And since ASD need evidence from early childhood, it is not something that is easy to fake.

But I understand the rumination over things in progress. I cannot feel comfortable until there is an answer. The world simply does not move fast enough for me. I am patient, but it drives me crazy!

Forgive yourself. It is going to be hard not to dwell on this, but know you are not alone. Many people have travelled the same road. (I could tell you not to worry, but I suspect that advice will work on you as well as it would work on me. )

 

[zozie]

You know, the more I think about this, the more I uncover things that have led to my distress during this evaluation.

The initial interview was almost entirely open-ended, as opposed to my mother's interview where she was asked about specific traits in my childhood, except not about my special interests, for some odd reason.

I really don't do well with non-specific questions, so I felt like the onus was on me to provide all of the information upfront--to essentially prove--that I was justified in seeking an autism diagnosis. But not because I could answer specific questions about autism while under the pressure of a phone call. No--while having to have gathered all the information to begin with and then be sure I presented them freeform and naturally under the pressure of a phone call.

I actually wasn't asked a single specific question about any traits at all. I had to somehow nonverbally demonstrate them, or remember to mention my sensitivities to light and sound and eyes, among other stuff. I felt like the assessor was wholly disinterested in autism because of her lack of questions about it. So I would call this disinterest the incentive to not diagnose, or at least to doubt a diagnosis.

That (at the very least, perceived) social message set the tone, as I trace it back. In the future, I will be clear to state that very broad questions send my mind reeling and I don't know what they're looking for. Has caused big problems in past jobs, actually.

That's probably where my analyst kicked in and wondered why more specific questions about autism weren't put my way, but more and more specific questions about personality were. And so it began to deconstruct the assessment process while being assessed and the nightmare anxiety has escalated from there.

Thanks for asking that question @Finder, about analysis. That's really helped me out.

 

[Gift2humanity]

Hi zozie. Forgetting important things is frustrating and something I do.
Notes help, if something random pops in your head, note it down, think of school, family relations, friends, social, quirks, sensory issues, meltdowns, communication problems, even look online to jog your memory by looking at a list of criteria.

Info from your mother is useful.

It's stressful, feeling weird or broken is common. Note down about your Dad.

I did dugs and was misdiagnosed but thanks to my psychiatrist writing to the AS centre I got reassessed and diagnosed.
I worry about missing details too when reporting anything, medical, workmen, etc etc

I really hope you are. If it were me I would give them a list, I wrote a letter. They were glad of the info.

 

[zozie]

Hi zozie. Forgetting important things is frustrating and something I do.
Notes help, if something random pops in your head, note it down, think of school, family relations, friends, social, quirks, sensory issues, meltdowns, communication problems, even look online to jog your memory by looking at a list of criteria.

Info from your mother is useful.

It's stressful, feeling weird or broken is common. Note down about your Dad.

I did dugs and was misdiagnosed but thanks to my psychiatrist writing to the AS centre I got reassessed and diagnosed.
I worry about missing details too when reporting anything, medical, workmen, etc etc

I really hope you are. If it were me I would give them a list, I wrote a letter. They were glad of the info.

Great points. At this time, they've asked me to just take the tests and wait for the results. I have only a few days left. Friday cannot come soon enough.

 

[Gift2humanity]

Great points. At this time, they've asked me to just take the tests and wait for the results. I have only a few days left. Friday cannot come soon enough.

Hi sorry for late reply. I wish you all the luck in the world for Friday.

 

[Sasha20]

I have an interview long assessment coming up re my daughter before the formal diagnosis , it will be a few hrs long and i am terrified i wont be able to answer something or get some information wrong and it will affect the diagnosis . I really want to be able to keep calm and not get upset talking bout it as she has had a really tough year and we only found out a few months ago that her autism was causing her depression and anxiety which was thought to have been the result of a family break up . I got briefed by the assessor to keep a watch out for a number of certain things re how she communicates , restrictive behaviour , recipocation . She masks a huge amount which makes it even harder to assess her

 

[zozie]

I have found that writing things down is really, really helpful. When I was researching for myself, I came across a YouTuber called Yo Samdy Sam, who has created a google doc worksheet based on the DSM-V criteria that you can edit and write your own notes in. I got access to the worksheet by signing up for emails. Yo Samdy Sam – Autism, neurodiversity and exploring the autistic experience

I also gave myself several days to jog my memory and observe things I might have missed. I also did some research into how females present and wrote those down, too.

My mother reports being asked specific questions about my behaviors, which I wish I would have been asked myself instead of broad questions like "Tell me about your childhood." She says that she used her journals to help her answer questions. I also did a fair amount of educating my mother about my own experience. This may be a possibility as well, if your daughter can communicate what's going on with her, but also it may give you information about how she is not able to communicate, if that's the case.

Best of luck with your interview -- it is so stressful worrying about possible missed information. Do your best, and know that you have community here.

 

[Sasha20]

Thank you so much , i will check out that link and jot stuff that i can remember down till assessment on friday . She is very low today and she has missed loads of school , the masking leaves her extremely exhausted , alot of saturdays spent in bed trying to recover for her after school week , if she can even do the 5 days . She suffers with depression and anxiety , she is only 13 , so hard to see how she struggles

 

[zozie]

Thank you so much , i will check out that link and jot stuff that i can remember down till assessment on friday . She is very low today and she has missed loads of school , the masking leaves her extremely exhausted , alot of saturdays spent in bed trying to recover for her after school week , if she can even do the 5 days . She suffers with depression and anxiety , she is only 13 , so hard to see how she struggles

My 16-year-old has an assessment appointment for March and it's really tough to see them struggle, too, especially after all of the uncertainty of this year. And yeah, the exhaustion is real, both for them and for me. But it really looks like you care a lot, and that family support goes a long way.