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bee33
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06 Jan 2023, 2:54 pm

This is only my experience and may not apply to you or anyone here.

I recently had an autism assessment from someone who is very well respected and also seems very likeable and kind. It was over Zoom.

It was the most stressful experience I have had in a very long time. It's been a month and I am still upset and wake up every day thinking about it, and I feel upset and feel shabbily treated and it's hard to stop myself from writing to them (the expert and her assistant) to explain once again how much they upset me by not listening, not asking any questions that would yield meaningful information, (information about myself that the expert would then be able to assess) and not giving me any new knowledge about my autism (? I still don't know) in return for the substantial amount I paid.

For instance, she was adamant that I don't have sensory issues, but she didn't ask. I have no way of knowing, from my own personal experience (which is the only experience I have), if I am more bothered by loud noises, lights, or uncomfortable clothing than people who are not on the spectrum. She has to ask! So, I can only wear t-shirts and sweaters because I can't tolerate non-stretchy fabrics, like a button-down shirt. I feel like I am imprisoned in them and it's uncomfortable to move my arms. I tried to mention this but she waved it off. I only wear the plainest and most comfortable bras available, and I have to immediately take them off the moment I get home. But she didn't ask. She asked about tags, but none of the clothes I wear (t-shirts and sweaters) have any tags. I have to always always sleep in long sleeves because I can't stand breathing on my arm. I told her this but she waved it off. I have to put a sheet of cardboard over a window in another room because even with curtains I can't stand the strip of light that I can see from where I normally sit. Maybe all of this is usual for everyone and is not indicative of sensitivity and not a symptom of autism, but, again, I don't know! She's the one who is supposed to figure it out and tell me.

But more importantly, I don't care even if I don't meet the criteria for sensitivity or inflexibility, because what I wanted to know was whether the very significant difficulties I have in my life dealing with just about everything but especially interacting with other people are due to autism. But she said that if I don't check all the boxes it's not autism, or at least not a "clinical diagnosis," which is the only thing she does. What do I care if it's a clinical diagnosis? What I wanted to know is if my difficulties in life are because I am on the spectrum. And after this terribly stressful interaction I still don't know!

She seemed to agree that I have some autistic traits, but she considered it to be sub-clinical, therefore, to her thinking, undiagnosable. But if someone's life is severely impaired, and mine certainly is, (I can't navigate being in the world, primarily socially but also in countless other ways, and it has made my life incredibly difficult -- I haven't described any of it here), that is not considered sub-clinical, by definition. And as far as I understand the autism spectrum, it is highly variable but one is either not on it, or on it, there is no in-between.

And after I complained about this, she had the gall to say I was free to self-diagnose if that is what I want to do. I don't want to self-diagnose, obviously. That's why I went through the ordeal of talking to her! I am trying to understand what is making my life so difficult, and if it's not autism I am fine with that, but, again, I still don't know!

And I guess she knew she was wrong to dismiss my diagnosis completely because she dug up a fairly new (and to me very questionable) diagnosis of Social Communication Disorder, which is similar to autism but only includes social impairment and not the other symptoms. But this doesn't fit me at all. It ignores most of my symptoms and introduces other ones that I don't have. If I can have this diagnosis without actually fitting all the criteria, it doesn't make sense that I can't be on the spectrum without (in her view) fitting all the criteria.

This has been such an ordeal that it will be with me for a long time. I only wish I could go back in time and not have done it at all.



MissMary227
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06 Jan 2023, 3:09 pm

bee33 wrote:
This is only my experience and may not apply to you or anyone here.

I recently had an autism assessment from someone who is very well respected and also seems very likeable and kind. It was over Zoom.

It was the most stressful experience I have had in a very long time. It's been a month and I am still upset and wake up every day thinking about it, and I feel upset and feel shabbily treated and it's hard to stop myself from writing to them (the expert and her assistant) to explain once again how much they upset me by not listening, not asking any questions that would yield meaningful information, (information about myself that the expert would then be able to assess) and not giving me any new knowledge about my autism (? I still don't know) in return for the substantial amount I paid.

For instance, she was adamant that I don't have sensory issues, but she didn't ask. I have no way of knowing, from my own personal experience (which is the only experience I have), if I am more bothered by loud noises, lights, or uncomfortable clothing than people who are not on the spectrum. She has to ask! So, I can only wear t-shirts and sweaters because I can't tolerate non-stretchy fabrics, like a button-down shirt. I feel like I am imprisoned in them and it's uncomfortable to move my arms. I tried to mention this but she waved it off. I only wear the plainest and most comfortable bras available, and I have to immediately take them off the moment I get home. But she didn't ask. She asked about tags, but none of the clothes I wear (t-shirts and sweaters) have any tags. I have to always always sleep in long sleeves because I can't stand breathing on my arm. I told her this but she waved it off. I have to put a sheet of cardboard over a window in another room because even with curtains I can't stand the strip of light that I can see from where I normally sit. Maybe all of this is usual for everyone and is not indicative of sensitivity and not a symptom of autism, but, again, I don't know! She's the one who is supposed to figure it out and tell me.

But more importantly, I don't care even if I don't meet the criteria for sensitivity or inflexibility, because what I wanted to know was whether the very significant difficulties I have in my life dealing with just about everything but especially interacting with other people are due to autism. But she said that if I don't check all the boxes it's not autism, or at least not a "clinical diagnosis," which is the only thing she does. What do I care if it's a clinical diagnosis? What I wanted to know is if my difficulties in life are because I am on the spectrum. And after this terribly stressful interaction I still don't know!

She seemed to agree that I have some autistic traits, but she considered it to be sub-clinical, therefore, to her thinking, undiagnosable. But if someone's life is severely impaired, and mine certainly is, (I can't navigate being in the world, primarily socially but also in countless other ways, and it has made my life incredibly difficult -- I haven't described any of it here), that is not considered sub-clinical, by definition. And as far as I understand the autism spectrum, it is highly variable but one is either not on it, or on it, there is no in-between.

And after I complained about this, she had the gall to say I was free to self-diagnose if that is what I want to do. I don't want to self-diagnose, obviously. That's why I went through the ordeal of talking to her! I am trying to understand what is making my life so difficult, and if it's not autism I am fine with that, but, again, I still don't know!

And I guess she knew she was wrong to dismiss my diagnosis completely because she dug up a fairly new (and to me very questionable) diagnosis of Social Communication Disorder, which is similar to autism but only includes social impairment and not the other symptoms. But this doesn't fit me at all. It ignores most of my symptoms and introduces other ones that I don't have. If I can have this diagnosis without actually fitting all the criteria, it doesn't make sense that I can't be on the spectrum without (in her view) fitting all the criteria.

This has been such an ordeal that it will be with me for a long time. I only wish I could go back in time and not have done it at all.


Call me old-fashioned but I just don't believe in doing therapy virtually. Unless it's short-term and a relationship face-to-face has already been established. One can spend a few minutes with a person and tell if they are on the spectrum for the most part. I know everybody is doing this type of therapy now and I am considering getting my PMHNP certification as well. But if I do, I will only do therapy in person.

So, I'm sorry you had a bad ordeal. Maybe just do some tests online?


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06 Jan 2023, 4:07 pm

I don't like Zoom interactions either, but I didn't see that I had any other choice. I had tried a local specialist and she did an initial interview before the actual assessment, and it didn't give me confidence so I decided not to go with her.

But then again this local person mentioned to me that, for instance, many people on the spectrum can't drive, which I can't do, even though I really tried (for about 4 years I lived in a city with low traffic, and I could get around by doing things like making three right turns instead of making a left turn, which I find too hard to navigate) but I never got past the tentative beginner stage which most people get over after a few weeks of driving. But this recent expert that I saw over Zoom ignored my inability to drive and didn't even ask me about it, though I had written it in the forms she had sent.

I did do the online assessments and I got 37 out of 50 on the Autism Spectrum Quotient, which said "indicates significant autistic traits." And I did the CAT-Q test on embrace-autism.com and got 137. The average score for women who are autistic is 124.

It's not that I want to be autistic. I'd much rather my difficulties were due to something else that is more treatable or at least more tractable. But I have had no clues in my 58 years as to what that might be if it's not autism.



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06 Jan 2023, 4:18 pm

bee33 wrote:
I don't like Zoom interactions either, but I didn't see that I had any other choice. I had tried a local specialist and she did an initial interview before the actual assessment, and it didn't give me confidence so I decided not to go with her.

But then again this local person mentioned to me that, for instance, many people on the spectrum can't drive, which I can't do, even though I really tried (for about 4 years I lived in a city with low traffic, and I could get around by doing things like making three right turns instead of making a left turn, which I find too hard to navigate) but I never got past the tentative beginner stage which most people get over after a few weeks of driving. But this recent expert that I saw over Zoom ignored my inability to drive and didn't even ask me about it, though I had written it in the forms she had sent.

I did do the online assessments and I got 37 out of 50 on the Autism Spectrum Quotient, which said "indicates significant autistic traits." And I did the CAT-Q test on embrace-autism.com and got 137. The average score for women who are autistic is 124.

It's not that I want to be autistic. I'd much rather my difficulties were due to something else that is more treatable or at least more tractable. But I have had no clues in my 58 years as to what that might be if it's not autism.


It sounds like you have autism then, plus with the other things you mentioned. <3


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06 Jan 2023, 4:34 pm

I would go to an Occupational Therapist (online or in-person) for an assessment on Sensory Processing Disorder. Then take it back to the online therapist for review.

What standardized tests did the online person do in your evaluation?

I have a list of all mine somewhere but I can’t access it right now.



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06 Jan 2023, 4:42 pm

It really sounds like it was just a "bad" assessment. And unless you actually completed a battery of written tests (mine took two days) and not just answered random questions from your therapist, it probably wasn't even a valid one.

I didn't get my diagnosis until I was in my 30's, and unless as an adult you are seeking workplace accommodations or are trying to qualify for disability benefits I wouldn't suggest anyone get a formal assessment. Why? Because by and large, there are no programs or services in the US for adults.

Some people like having an official diagnosis for their own peace of mind, but there is little practical use for one beyond that.

I would suggest finding a competent therapist who can help you with your own specific issues however. (whether autistic or not, you can get treatment for the symptoms you are experiencing.)



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06 Jan 2023, 6:56 pm

Thank you for your replies. They do make me feel better.

The only tests I was asked to take are the two that I posted. I'll look up Sensory Processing Disorder. And I do have a good therapist. She is not knowledgeable about autism per se, but she has actually been studying it for my sake, and she said she has had autistic patients before, so she is not unfamiliar with people on the spectrum. She feels that I am autistic, and she knows me much better than the expert whom I talked to for about an hour and a half. But, again, I wanted a more definitive answer, and I didn't get one. But I think DanielW is right that it's not necessarily useful.

One autism symptom that I know I don't have is the need for sameness, and inflexibility. I have very bad insomnia so I wake up at very different times on different days, so I couldn't stick to a schedule if I wanted to, and I actually don't like to feel like I have appointments and obligations that I have set up for myself to do particular things at particular times, that I would then need to follow. She was pretty adamant that this makes me not autistic.

But I eat the same things all the time, there are maybe four different things that I always eat. And the clothes I wear are all solid colors, and they are black, gray, or red, and sometimes a subdued blue. I cut my own hair because I can't stand the hairdresser fussing with me. I don't wear makeup, and I think it's a chore to have to look presentable when I go outside, like having to comb my hair or wear a bra. I think these are all autistic-ish?

She also asked if I have to plan where I'm going to sit on the bus, or to find out the layout of new places I'm going to, and who is going to be there. I don't. She felt this too meant I am not autistic. But these strike me as coping strategies rather than symptoms.

Anyway, thank you all for your insights.



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06 Jan 2023, 7:11 pm

Have you considered it might be ADHD? There is a lot of overlap (I actually have both) and a lot of what you are describing (same-foods, sensory issues, Hair-cuts, sticking to a schedule etc.) could also very well be ADHD.

https://www.youtube.com/watch?v=pMx1DnSn-eg

Autism is very difficult to assess (particularly in adults, and adult women especially). While its great that your therapist is willing to learn, and has some experience with autism, unless someone is really knowledgeable, they can easily misinterpret signs and symptoms.



Last edited by DanielW on 06 Jan 2023, 9:54 pm, edited 1 time in total.

bee33
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06 Jan 2023, 8:30 pm

I don't think it's ADHD because I'm not hyperactive or easily distracted, or excitable. Thanks for the video, which I watched.



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06 Jan 2023, 8:53 pm

bee33 wrote:
Thank you for your replies. They do make me feel better.

The only tests I was asked to take are the two that I posted. I'll look up Sensory Processing Disorder. And I do have a good therapist. She is not knowledgeable about autism per se, but she has actually been studying it for my sake, and she said she has had autistic patients before, so she is not unfamiliar with people on the spectrum. She feels that I am autistic, and she knows me much better than the expert whom I talked to for about an hour and a half. But, again, I wanted a more definitive answer, and I didn't get one. But I think DanielW is right that it's not necessarily useful.

One autism symptom that I know I don't have is the need for sameness, and inflexibility. I have very bad insomnia so I wake up at very different times on different days, so I couldn't stick to a schedule if I wanted to, and I actually don't like to feel like I have appointments and obligations that I have set up for myself to do particular things at particular times, that I would then need to follow. She was pretty adamant that this makes me not autistic.

But I eat the same things all the time, there are maybe four different things that I always eat. And the clothes I wear are all solid colors, and they are black, gray, or red, and sometimes a subdued blue. I cut my own hair because I can't stand the hairdresser fussing with me. I don't wear makeup, and I think it's a chore to have to look presentable when I go outside, like having to comb my hair or wear a bra. I think these are all autistic-ish?

She also asked if I have to plan where I'm going to sit on the bus, or to find out the layout of new places I'm going to, and who is going to be there. I don't. She felt this too meant I am not autistic. But these strike me as coping strategies rather than symptoms.

Anyway, thank you all for your insights.


How would you plan where to sit on a bus? That doesn’t make sense to me because even though you might have a preference those seats might be taken. My preference would be NO BUS because I get freaked out by being around so many people with unpredictable movements and smells and sounds. I would want to be by a door for getting off so everyone wouldn’t stare at me. I’d want an aisle. But none of that is really planning is it? It’s not like we select our seats ahead of time the way we do for cinemas now. Layout of new places? How? Buy a blueprint? I don’t get it. Who will be there? Yes ideally but we can’t control that. Those are odd questions imo.

My diagnostic test was 12 hours with standardized IQ / performance tests and tasks, many done on a computer or timed. They were verified by a third party autism data place in another country, and reported to me with standard deviation scores and percentiles.

What were your doctor’s credentials? She sounds very casual and inexperienced.



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07 Jan 2023, 4:01 am

bee33 wrote:
This is only my experience and may not apply to you or anyone here.

I recently had an autism assessment from someone who is very well respected and also seems very likeable and kind. It was over Zoom.

It was the most stressful experience I have had in a very long time. It's been a month and I am still upset and wake up every day thinking about it, and I feel upset and feel shabbily treated and it's hard to stop myself from writing to them (the expert and her assistant) to explain once again how much they upset me by not listening, not asking any questions that would yield meaningful information, (information about myself that the expert would then be able to assess) and not giving me any new knowledge about my autism (? I still don't know) in return for the substantial amount I paid.

For instance, she was adamant that I don't have sensory issues, but she didn't ask. I have no way of knowing, from my own personal experience (which is the only experience I have), if I am more bothered by loud noises, lights, or uncomfortable clothing than people who are not on the spectrum. She has to ask! So, I can only wear t-shirts and sweaters because I can't tolerate non-stretchy fabrics, like a button-down shirt. I feel like I am imprisoned in them and it's uncomfortable to move my arms. I tried to mention this but she waved it off. I only wear the plainest and most comfortable bras available, and I have to immediately take them off the moment I get home. But she didn't ask. She asked about tags, but none of the clothes I wear (t-shirts and sweaters) have any tags. I have to always always sleep in long sleeves because I can't stand breathing on my arm. I told her this but she waved it off. I have to put a sheet of cardboard over a window in another room because even with curtains I can't stand the strip of light that I can see from where I normally sit. Maybe all of this is usual for everyone and is not indicative of sensitivity and not a symptom of autism, but, again, I don't know! She's the one who is supposed to figure it out and tell me.

But more importantly, I don't care even if I don't meet the criteria for sensitivity or inflexibility, because what I wanted to know was whether the very significant difficulties I have in my life dealing with just about everything but especially interacting with other people are due to autism. But she said that if I don't check all the boxes it's not autism, or at least not a "clinical diagnosis," which is the only thing she does. What do I care if it's a clinical diagnosis? What I wanted to know is if my difficulties in life are because I am on the spectrum. And after this terribly stressful interaction I still don't know!

She seemed to agree that I have some autistic traits, but she considered it to be sub-clinical, therefore, to her thinking, undiagnosable. But if someone's life is severely impaired, and mine certainly is, (I can't navigate being in the world, primarily socially but also in countless other ways, and it has made my life incredibly difficult -- I haven't described any of it here), that is not considered sub-clinical, by definition. And as far as I understand the autism spectrum, it is highly variable but one is either not on it, or on it, there is no in-between.

And after I complained about this, she had the gall to say I was free to self-diagnose if that is what I want to do. I don't want to self-diagnose, obviously. That's why I went through the ordeal of talking to her! I am trying to understand what is making my life so difficult, and if it's not autism I am fine with that, but, again, I still don't know!

And I guess she knew she was wrong to dismiss my diagnosis completely because she dug up a fairly new (and to me very questionable) diagnosis of Social Communication Disorder, which is similar to autism but only includes social impairment and not the other symptoms. But this doesn't fit me at all. It ignores most of my symptoms and introduces other ones that I don't have. If I can have this diagnosis without actually fitting all the criteria, it doesn't make sense that I can't be on the spectrum without (in her view) fitting all the criteria.

This has been such an ordeal that it will be with me for a long time. I only wish I could go back in time and not have done it at all.

Her knowledge is not respected by me. It is one post but my impression is of a person who has just enough knowledge of autism to be dangerous. For one thing, very few autistics check all the boxes. She had to look up Social Communication Disorder, which has been around since the 2000s(SMH). And the current diagnosis is called "Social (Pragmatic) Communication Disorder". This diagnosis has been around for a decade. What that describes is Autism sans
restricted, repetitive behaviors and interests. She just went by one interview, she did not give you tests?

Right now you suspect(not self-diagnosed) autism. Until you can get a competent clinician, mitigate/treat your impairing traits associated with autism.


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08 Jan 2023, 1:50 pm

My Adult Autism Assessment was kind of fun...definitely not unpleasant.

Besides the standardized questionnaires there were some intellectual exercises. And she did ask me how I would react to certain things.

OK. I got the impression that the parts of the assessment that were clearly designed for children were a little embarrassing...for the psychologist! I thought they were amusing (and I don't see any reason to question their utility, even with the 64-year old guy I was at the time).

Clearly the assessment process I went through seems different than the one you went through.


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