Can HFA be missed?

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The OP is in the US and it can difficult to get insurance to pay for a proper evaluation, especially if they don't expect the results to result in a new treatment plan.

It reminds me of being refused coverage for a vaccine as it wasn't considered to be preventative care, even though vaccines are the best possible example of preventative care.

Ask specifically why you didn't get the autism diagnosis. I've read of cases where the patient was told they couldn't be autistic because they had friends, or could speak to a group of people, had a sales job, owned a home, were married or were able to give eye contact.

An evaluation should take at least four hours. Part of my evaluation (SPOILER COMING FOR THOSE WHO ARE IN THE PROCESS OF SEEKING AN ASSESSMENT) was the examiner tossing in sarcastic or fake statements to see if I took them seriously. I took all of them seriously. This is how a good examiner cuts through a thick mask. Plus, if you don't know what the examiner is observing for, while performing a test, you won't know how to mask.

Not every patient walks into the evalution room flapping their hands and info-dumping about airport runways. Many present as normal, but the testing will draw out the autism, no matter how good their masking is.

I have good eye contact and asked if this could taint the evaluation, and she said a person could be on the spectrum and still have good eye contact. It doesn't all come down to that one tiny metric, nor how many friends you have.

Yes, it can be missed. In my case b/c I had to adjust my self-reporting to show my Autism. Initially I reported that I'm not anxious, I'm not rigid, I'm not... oh, wait------ these things (x, y, z) are indicative of anxious and rigid and ... --- oh, then I am DEFINITELY those things. My daughter has ASD and I managed not to report it well relative to the neurotypical standards of evaluation (grrrrrrrr)! ! Now I tell evaluators that I am neurodivergent, and to please consider that in how they interpret or manage my responses. I communicate well with my chosen friends and well enough in general --- I started developing my theatrical skills at age 6 and in college studied advanced Psychology and Communication in college alongside my Engineering degree. Ummmm, but I think my 25+ pages of supporting documentation gave me away (I'm the expressive ASD type). My daughter and BFF are the unexpressive ASD type and have yet to be diagnosed, not for lack of trying for daughter. Next attempt in June.

Wishing you find what fits you. What parts of those relate to the whole of you.

I submitted 188 pages with appendices, professionally printed on 8.5x11 pages. ^ lol

I agree the OP should find out exactly why it was determined.
Did you do the ADOS, at least?

I'm pretty sure mine wasn't diagnosed by a neuropsychiatrist, but then I already knew that I was poorly diagnosed. I do still believe I definitely have it, and I have gone over all the symptoms n stuff with my therapists to re-affirm the existing diagnosis.

Evaluations aren't covered here either because they aren't conducted by medical doctors.
Psychologists are paid out of pocket.
My assessment cost almost $3K.
They're ridiculously cost-prohibitive especially considering autistic people are often un / underemployed.


* My ADHD assessment at 20 hours was free because it was a psychiatrist (medical doctor).

I think I said previously that my ASD was 20 hours but that was a mistake. It was about 12 hours.
I was thinking 20 hours because of the ADHD test.

Definitely. I have been going to mental health professionals off and one since I was 8 years old-I am 56 now-and I wasn't diagnosed until about 10 years ago. So I was seeing therapists off and on for 40 years or so before someone figured out I was HFA. Probably was diagnosed as having Oppositional Defiant Disorder as a kid. Was first sent by the school district because I kept starting fights and such at school.

I really appreciate everyone’s comments! To reply to chose curious about the examination/meeting: It’s a bit hard for me to remember, truth be told. I believe it was about an hour and a half? If even… At first, she asked me some general questions, then had me do some creative work by telling a story with random objects and make up a story with her using a picture book. I believe we did some puzzles as well. It only lasted about an hour.

Funny enough, not only does my therapist highly suspect it, but my Pastor who I’m very close to agrees, and he a therapist in his day job. So I have two mental health professionals who say they think I have Level 1 autism that have known me for over a year, vs a “specialist” who saw me once for an hour.

It's going to depend a bit on what they're all looking for. The more things that they need to check, the longer it's going to take. But, taking less than a couple hours doesn't seem very thorough. Certainly not long enough to really establish much of anything.

I personally would take the recommendation to get screened as a valid reason to start making changes to your life though as so much of it isn't expensive or particularly risky to your health. Even just simple things can make a big difference and if you do find that they are making a difference, that is something that you'd likely want to mention if you do opt to get retested. As a lot of it isn't going to make much of a difference for the NT, but a massive difference for the ND.

That thing with the picture book and the little toys sounds like the ADOS.
Maybe you could ask what your ADOS score was?
Even if it was below the required number, ADOS is only one piece of data.
Ideally a person would be tested in verbal vs. non-verbal reasoning and many other areas.

I didn't meet the clinical threshold for ASD with the ADOS (by 1-2 pts), maybe b/c I am female, later in life, very well studied (relative to that test criteria). So my evaluator diagnosed me with ASD based on other factors. Some evaluators might be unwilling to take that risk or look further than the tip of that nose. According one study ADOS is wrong (false negative) for 30% of women; it did not report a result for non-binary.

The two are so similar NVLD is often mistaken for Autism Spectrum. I've got NVLD, but was misdiagnosed with ADHD which is also realtively similar.