Was told I had HF Autism (Level 1) and I'm not sure I do...

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I'm in my mid 40's. I'm struggling with navigating through life at the moment, dropping out of a couple grad programs, but had a fairly successful career in IT for over a decade. I've also got depression, ADHD, and several medical issues. I went to a state vocational rehabilitation office and they arranged for me to do some psychological testing to see what difficulties I have as far as memory and intellectual aptitude, and their conclusion, based on an overall history mainly covering my adult years, was that I have both ADHD and High Functioning Autism. And that I'm socially isolated and depressed.

This is something I had wondered about over the years. I had a friend who was looking into her own psychological difficulties, and the possibility that she had Asperger's syndrome. I asked her to take the ASQ (at least I think that is what it was, since the link I gave is dead), and I took it too. Apparently back then I scored a 18. I took it just now and scored a 17. Did the Cambridge Face-Voice test, and got 84%. Went and looked up the original research paper and that's about normal for neurotypicals. On the Cambridge Behavior Scale/Empathy Quotient, I scored 35, which is slightly closer to neurotypical than ASD for females. On the Systemizing quotient, I got 61, which is normal for neurotypical males but one standard deviation away from women.

So I'm really not sure that the HFA Level 1 Autism is appropriate. Any thoughts on what else I could look at? Is there anyone else out there who has wondered if their diagnosis (or lack thereof) is correct?

I'm similar to you on most of those and consider myself ASD and am upset that the online tests don't "show" it. My ASD therapist and assessor say I scream ASD, and I agree, but I scored NT on the "official" diagnostic test. And I don't have the stereotypical ASD characteristics. Studies show many AS tests are less accurate for women.

AQ - I first got 26 (surprised me b/c I was considering it for a friend, not myself), then got honest with myself and get 34 regularly now. But when I took the "official" test (ADOS) at the office, I got "NT" so either inadvertently "masked" (self-delusion returned) or succumbed to test bias.

Cambridge Face-Voice test - I got 89% on that test. I am very feeling and sensitive and can recognize facial expressions (almost a super power) and can be very expressive myself (when not controlled). It seems AS tends to extremes: those that don't AT ALL and those that REALLY do. I'm definitely in the REALLY DO camp.

Empathy Quotient - I got 37. My ASD clinical report noted that I my "friendliness, and concern for others is typical for that of normal adults". It happens. My ASD coach says it makes it that much harder for me b/c I can see and feel all the misunderstandings (contributing to depression).

Systemizing - I got 61. I wrote a note to myself that it seemed biased. I systemize ALL THE TIME at work, at home - but in a different way than that test, or else I don't self report well.

How did you score on the RDOS and The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)? At first I scored low on both, started to "unmask" and now score higher.

That said, I have an AS-like mother and AS-like BFF who are non-feelers and they don't readily see (or care?) that they may be AS. I can see it. They have made there lives so small that it's manageable. I on the other hand live so big that I am in constant distress. So I "feel" my AS. They do not "feel" theirs.

So, ultimately it's for you to consider (as you are doing) and choose. I have a follow-up with my dr b/c although I was diagnosed ASD --- there is a word of doubt, I am concerned the diagnostic tests aren't accurate. It sounds like you may follow up in the other way: although you were diagnosed ASD, you are concerned the diagnostic tests are accurate (and hence your diagnosis is incorrect).

In any case, welcome to WP!

Welcome to Wrong Planet!

The expression of autism is different for women. Most of the assessment tests are based on the common male characteristics.

Try googling "women with autism" and you'll probably come up with info on women's expression.

This lecture may prove interesting to you.

https://m.youtube.com/watch?v=yKzWbDPisNk

A few of the autism characteristics fit me, but pretty much all of them can be explained by ADHD (which I've been diagnosed with for years), being extremely bright, having been bullied a lot as a child, and having grown up in a dysfunctional home. I can get into modes where I act like someone who has been abused or battered and get defensive and easily offended, even though I don't have strong aspects of abuse in my past, other than about 5 years of severe bullying. Social Pragmatic Communication Disorder seems to fit a lot better.

I usually enjoy social chit chat, and am interested in other people. I do lots of eye contact. In fact, eye contact with guys while standing near them tends to make me attracted to them. I don't consciously follow any patterns or rules of social interaction. Other than when people say at the end of a conversation or when I'm buying something at a store, if they say "Have a nice day" I say "You too". And I genuinely mean that I want them to have a nice day and for things to go well for them.

I don't have many of the typical autism symptoms, nor did I have them as a child. No restricted interests, no meltdowns, no stims (although I go through phases of twirling my hair, and wiggle my foot almost constantly). I don't create structured patterns and habits for myself, although I prefer aspects of work and school to be predictable in advance. I have been good in workplaces that had an aspect where I get to deal with computer problems that break unpredictably, and coming up with creative ways of investigating and solving the problem. I'm not generally detail oriented - I'm more of a big picture person. I don't have any sensory issues, other than sometimes having people talking around me makes it difficult to focus on work. I think I have a typical imagination. I wasn't rigid about routines as a child.

I'm nervous and awkward in new social situations where other people know each other much better than I know them, but I like social situations where I already know people, or I think that I will have a lot in common with the people I meet there. I'm not good at moving people beyond acquaintances to friends. I sometimes do things that offend other people and don't realize until afterwards that they are offended. I have difficulty changing my behavior to fit different circumstances and typically talk loudly. I can be a picky eater, and sometimes will eat the same meal (ones that are easy to fix, like a favorite TV dinner, or peanut butter sandwiches) for several meals in a row, or several days in a row. I read obsessively as a child, could that be a special interest? I had motor skill delays as a child. Sometimes I have a flat affect. I get outraged when I think things are not the way they should be, and speaking up about them often gets me in hot water. Sometimes I'm naive or don't catch on to jokes or sarcasm right away, but I do have a sense of humor and enjoy joking around with people. I had difficulty with writing papers or essay tests in high school and college.

I do prefer comfortable clothes, but I will buy fancy clothes that are potentially uncomfortable and then never wear them. Jeans and a t-shirt or yoga pants and a t-shirt are typical preferences. I have problems organizing my overall environment, but I will over organize some small detail. But then I will forget how I organized it, and need to come up with another system. If I'm interested in a task, I can focus on it intently, but it takes some time to settle down the ADHD distractedness. I can't focus on tasks that don't interest me very well. Sometimes I don't notice social rules, so can't follow them. But other times I know the social rules, find them annoying, and ignore them. Many of my classmates found me annoying in high school, but I was more of a teachers pet and always was answering questions.

I'll watch the video link later. I've been writing this too long and need to shower, get dressed and leave the house 20 minutes ago. More later...

Sorry to say (I don't want to be creepy), but you sound like me. To a T, excepting sensory. I think of ASD as the umbrella - a pattern I fit --- it comes in extremes, e.g. I am hypersensitive, but my ASD-like BF is hyposensitive. I feel joy (and disappointment) many times a day. My BFF has felt these one or twice in her LIFE. We are different sides of the same coin. In my ASD support group I see the same. People like me, people like her -- all with share characteristics which manifest in different ways (some MORE and some LESS). Instead of calling out each individual challenge (verbal, social, sensory, emotional regulation, anxiety, ADHD) it gets lumped as ASD which implies most (maybe not all) of these.

If you'd asked me in May if I stimmed and had ASD characteristics, I would have said "no". Now that I have been watching myself for some months, whoa! And then I started relaxing and being more myself. Whoa, whoa!! ! Not only do I stim (I'm smelling my hair right now), I even rock under stress, slightly. I rub my ear lobes a lot. I watched the Netflix show Atypical and saw the main character pulling his hair, hard and thought I definitely don't do that. I got really stressed the other day and rubbed the side of head, my ears, hard. Well, I guess I definitely do. I wasn't aware of these things, I suppress them really well in company and ignored them in private. Thinking back, I used to swivel my hips, flex my leg muscles --- all the ways I hid stim. My favorite stim: DANCE. My ASD therapist says I have excellent control of my traits - which is a blessing and a curse.

The other day a friend stopped talking midsentence and said to me "your eyes are so pretty" and I realized I must have been staring. I am intense (staring) or withdrawn (away); I don't do middle ground very well. I have affection for strangers when eye contact is made, etc., etc., etc. I have affection for old friends, which apparently is not mutual, to the level I feel it.

I have serial obsessions rather than special interests. A single "special interest" applies to men, not so much women. As I child I did model horses, stickers, coins, - as an adolescent, fantasy books, stamps (nothing geeky or fact finding, just to collect something of variety). I was a one season wonder: tried clubs and sports, each for one season.

I didn't have many meltdowns, but I tightly controlled myself, a degree of shut down --- depression was my go to. My assessor believes I am not depressed so much as frustrated and I agree. Aside engineering, I studied acting, studied psychology. I am super well-behaved, I can project confidence like nobody's business --- it's a façade, it's fragile. I lost myself.

Most everybody on here says they knew they were different. I didn't. Even though my yearbook and letters to me all said "you are strange", even my BFF repeatedly told me "you're not like other people", I didn't understand and moved on. I move fast. I do a lot. I am high functioning and love myself in private with no stress and am so frustrated when trying to relate to others or otherwise stressed. Give me a few hours of quiet and a goal and I can produce something amazing, send me to the grocery store, especially at peak time and I'll be "amazing" also (just don't touch me or I will explode).

Wishing you well as you consider your identity (whatever that may be). I'm reading "Very Late Diagnosis..." and relate. I'm just two weeks out from mine (which I wanted) and it's rough.

The description you gave of your traits doesn't sound like me. When you get away from the autism traits as listed, then you are much more likely to include things that are within normal variation for neurotypicals, or are characteristics that better describe a different diagnosis, such as depression, general anxiety disorder, ADHD, or a medical condition.

How did you go about finding an ASD therapist? And did you find one that takes insurance? All the ones I research seem to focus on ASD in kids, not adults, and charge really high rates without insurance. They are focused on treating the autistic children of wealthy parents in the high income neighborhood where I live. I just live here because it's next to the college I used to attend.

I am fortunate to live in a progressive area and there are lots of community resources in general. I contacted an ASD support group (for adults) and was referred to an ASD therapist (for adults). From her I got the name of an assessor knowledgeable of ASD (in adult women). Both are out-of-network so I have a higher deductible to meet.

I don't mean to diminish your hardship, but I do envy you self awareness. Ironic I might have more ASD characteristics, since I "failed" the ADOS-2 (which is greatly bothering me). Did you take the ADOS-2, or a similar test during assessment?

If you don't mind me jumping in I am in the middle of an assessment now. It costs about $2500 (I am lucky: insurance paying about $2000). As for finding someone who dealt with adults, it was H-A-R-D and I could not find anyone who would do it without my parents other than the one I am seeing (using my brother instead). I got a referral from the provincial autism organization and still had to wait about 8 months. This office was located near the 'rich' side of town and it is obviously geared towards them but so far it has been going okay. Like you I (expect to be) diagnosed with ASD level 1 and ADHD but will have to wait and see.

The only difference is that I already know beyond any possible doubt that I am on the spectrum. If you look past the stereotypes I could not be more of a textbook case. ADHD was unexpectedly brought up but again once you look past the stereotype it doesn't seem the least bit unreasonable.

Is the ADOS 2 test easy to take?

Brothers friend is waiting to be assessed himself. He does come across as being slightly autistic in his ways. Is why I can talk to him and find him interesting and he finds me interesting too as we both love local history etc.
But he said that he has been waiting for two years and still has not heard anything. I am partly thinking that me being on the list may be preventing others from being assessed who may be desperate.
The difficulties I face at the moment are not really an issue because I can avoid the situations (At the moment) that cause me stress. I mean... I let my Mum deal with the shopping. I am avoiding working because the last few times I have done so I have ended up in an emotional mess. I am currently on a benefit, but if they find I need to get a job and I am not ready, I am not going to risk it and I will just sign off the benefit. I would rather eat one small meal a day and avoid anything which costs money, and sell posessions then risk going into the stress of trying to cope with strings of partial shutdowns, and doing my best to fight off shutdowns (A really horrible situation to be in where I would rather give up on my future then have to deal with the situations).
It is not that I don't enjoy the work and the company of staff to talk to. It is more that these days I find the stress of deadlines (Even if I have plenty of time to do a good job it is on my mind) to be too much for me. Also the jobs that fit my tallents and skills (So I am less stressed because I am in my element) happen to also be the ones where I am working in an enviroment where I am more prone to shutting down because of a sensory issue I have, and that is smell. Certain smells cause me to go into shutdown mode. And one is petrolium based oils. (Have enough issues trying to fill my car with diesel (Or my last car with petrol) but at least the time I am exposed to the smells are short so I may start to partly shut down, but then I can drive aaay and remove myself from the enviroment. In the workplace I can't so I really suffer. And a worse enviroment then that for me is at a hospital where the bleach smells set my sensory issues into hyperdrive! I have had injuries and endured the pain to avoid dealing with the hospital. I can deal with hospitals foe a quick visit if it is not me. I go in, say hello to be polite, let my Mum stay for the rest of visiting and I rush to get out the first door I can so I can recover. I have been for months in agony with a broken sholder which eventually stopped hurting (It still clicks) and not telling anyone so I could avoid going to hospital. Several months ago for the second time I crushed my finger (The last time I worked) and I was asked if I was ok and needed to book it, and the thought of waiting in hospital waiting rooms was too much so I just carried on working and must have said I was ok. I couldn't use the two fingers for a few months and printed with my left hand instead if the pain was too much).

[Sorry. I have just realized I am writing and I don't know why. I can't remember the subject I am sharing. I hope it makes sense. Ignore if it does not. Thanks].

@Mountain Goat, the ADOS-2 was part of my assessor's toolkit. Similar to online RDOS and RAADS. Nuances were difficult for me as always --- if I recall correctly, it said to consider the past six months (was something earlier or later than that?), it asked if someone had called me "rude" (no, but I have had plenty of dirty looks and other "soft" complaints). I didn't "pass" because I answered "no" to a lot: it could be "no" or "yes" depending on what is MEANT (whining). I'm an optimist and delusional, so I like to think of myself as without dysfunction. Do I think of xxx? No. It comes to mind often but I don't like to think about it. So, "no". Oh, would you call that "yes"? Too late.

My vote is you having essential oils or something on hand to combat your olfactory triggers. I hope your injuries are well on the mend now.

All injuries... No pain. All is fine. My body works fine.

Partial shutdowns and shutdowns... Uhmm. That is the issue. At least I have not had a full shutdown for a while. Just partial ones.

I didn't take *ANY* tests related to autism during my assessment. The assessor didn't get a structured history, didn't talk to any relatives who saw me as a child, and the person who wrote up the report and diagnosed me as autistic never saw me before presenting the report. His assistant was the one who gave me all the tests.
He isn't known as someone who has experience in diagnosing autism or ADHD in children or adults, just as someone who diagnoses people as being able to work or not.

I wrote up a rambling half-finished history of previous psycho-educational testing during a time when I was severely depressed, and didn't have time to edit it to make it make more sense.

He told me he diagnosed me as autistic based on my history (which is notes the other person took?), but the history he attached to the report was full of inaccuracies. He asked me to review the report, and then when I told him there were a bunch of inaccuracies, he said I was nitpicking and I couldn't change anything. Such as writing in the report that I quit grad school because I didn't want to be in that field anymore, but I quit school because they took my reduced courseload ADHD accommodations away. Or writing that many psychologists and psychiatrists said I had autism, when exactly one therapist has told me I had autism. And one other person read my psych history saying that the first therapist said I had autism, but now says she doesn't think I do.

I looked up whether it is possible to take the ADOS-2 and it doesn't sound like it's possible to take outside of an assessment.

On the aspietests RAADS-R I get 28.
on RDOS I get
Your neurodiverse (Aspie) score: 88 of 200
Your neurotypical (non-autistic) score: 142 of 200
You are very likely neurotypical

Well, then. WTH for you. I would indeed question that DX of ASD.

For perspective, I "failed" the ADOS-2, but got RAADs 108 (when masking), 135 (when unmasking) --- much higher than yours. I got RDOS 117 AS, 106 NT (when masking) and 134 AS, 90 NT (when not masking). Again, fairly high NT, but nowhere near yours. I was diagnosed "mild to moderate" ASD (report: "appears to meet criteria").

Last edited by SharonB on 19 Dec 2019, 3:31 pm, edited 1 time in total.

Someone put a link to a few online thingies. I do not know what they were called, but I recorded them in my signature below. I remember being puzzled about the empathy part because I did not understand the result.