2nd attempt at diagnosis failed...

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...for my daughter (age 12). The irony is that she is highly intelligent and we have accommodated her well so she doesn't meet the current diagnostic criteria. In my childhood my own Autistic mother accommodated me. Reluctantly the evaluator suggested my daughter be monitored and did report she has "Autistic traits". Sarcasm: You know, some of us (who mask strongly) don't become Autistic until later in life. Before that we are, ummm, what --- in prolonged gestation? Heck, I probably wouldn't have been diagnosed recently even, but my likely-Autistic manager left my company along with the "accommodations" he provided (a logical, fair workplace) and I was unprepared to face the workplace as it evolved in that absence: I was in crisis (easier diagnosis).

Back to the evaluation review: it was awful. I had divulged that I was Autistic at the onset of the process and the evaluator, who specializes in girls with Autism --and you think would know better-- roasted me. It was implied my daughter is picking up characteristics from me from the "Autistic culture" I create, and I am falsifying or otherwise misreporting my observations in order to create connection with my daughter. The evaluator referred me to the "best-selling book ... to help prevent .. the misdiagnosis... of Asperger's Disorder". OMG. OMG. Ummm, aren't Autistic folks known for eschewing connection and seeking Truth? I told her my daughter has my same facial structure and that was enough for me. The evaluator didn't LOL-cry with me.

So after my misdiagnoses (other than ASD) over the decades, age 8, age 16, age 20, age 30... here we are with my daughter: age 8, age 12... darn our medical community. My Allistic sister and good friend admittingly didn't know how to accommodate their ASD daughters and the daughters both have ASD diagnoses. For us, here we go again without the social validation and support. My heart hurts. My therapist says that high masking is a blessing and a curse.

It can be frustrating if or when medical professionals get things wrong, or seem ignorant/incompetent.

I think it is fairly common for general psychiatrists and such to be ignorant of autism and what it necessarily might look like. The best way to get a diagnosis is via an autism specialist with a good track record.

Yep. I am especially appalled b/c this practice was recommended as such. I myself had gone to a specialist for ASD women and received my DX finally in my late 40s, but an ASD friend did not - at the same practice. There was a note of doubt in mine since I was subclinical on the ADOS-2 "golden standard" - I was one or two points below threshold; just as my daughter's "borderline" ADOS-2 does. In my case the evaluator said there was sufficient compelling information outside my more "typical" ability to story tell.

LOL-cry. Glad to know my decades of study in theater and communications helped in that area --- and my daughter has dutifully copied me. The doctor noted that my daughter has limited gestures IRL and stunted conversation, but for the ADOS-2 she gave a right good performance. Sigh.

As well as any tests that are employed to diagnose autistic folk, the diagnosis often is at the discretion of one or many people who come to a conclusion on such matters.

And people are fallible, of course.

Ah, just so.

There are some professionals that believe autism is over diagnosed, that it is attention seeking people trying to be trendy and unfortunately for your daughter that the issue your supposed factitious disorder by proxy. Her use of the term “Autistic Culture” and the way she used it is the red flag for me.

It is infuriating that 2023 that these attitudes still exist among professionals and especially specialists. It is what it is. If possible you need to find another clinician. There might be the doctor shopping accusation that comes along with that but you have to do what is best for your daughter.

Good Luck.

Maybe the emphasis should be on symptoms rather than diagnosis. If the child is having problems at school, either academic or with socialization, address that rather than whether the child can be labelled as autistic.

MaxE, I get it. We have, and will continue to, meet or help her identify her individual needs.

I've read on here for whom the diagnosis at an early age HURT. I was misdiagnosed for over 45 years and it HURT. So, perhaps in the long run this experience will meet someplace in the middle.

AsPartofMe, yes. It felt like the reverse of the refrigerator-mom roast that was pervasive back in the day. The dr mentioned exactly what you said ("over diagnosis", "trendy"). Well, IMHO another gifted Autistic girl is not being diagnosed b/c of this. Now I'm wondering how I ever was (asides from my 25-page supporting documentation with decades of evidence "death from 1,000 paper cuts").

Thank you all for your insights.

Much like movie reviews, sometimes the content of a negative review tells you what you need to know.

It sounds like you have a reasonable conclusion of borderline ASD, but due to the difficulty in diagnosing women and narrow-minded evaluation you are unable to get a formal diagnosis.

What are you looking to get for your daughter with a formal diagnosis? Some accommodation in school?

Or just strip psychologists and psychiatrists of any time at all in the process and just let neurologists deal with it. I mean, it is undeniably a neurological condition, we don't let mental health providers treat epilepsy after all.

My third try is likely going to be with a neurologist just because they'll likely be more informed of the neurological discoveries since I first sought it treatment. There literally wasn't even a word for aphantasia and sdam also hadn't been discovered.

A neurologist might also be the way to go in this case as well. They should be able to look at it more objectively

Did either of you have psychometry testing? That's clinical like neurology. They were almost the same tests done by my neuropsychiatrist for ADHD testing: a bunch of computer timed activities where they even track your eye movement.

No, but I've got a referral to neurology to dig into this deeper. The previous evaluation was part of neuropsych workup, but also before most of that stuff was so sophisticated. It just strikes me as odd that there's so much attention on mental health professionals for what is a neurological condition.

I don't think of the diagnosticians as mental health professionals. Most of them are PhD clinical psychologists or neuropsychologists, which means they've studied child development, social behaviour, thought processes, etc., and they've specialised in Autism research. I agree that "ordinary" psychologists are more about mental health but they don't usually have the creds to diagnose. Well, not here, anyway. I have a neurologist because of my strokes but I don't see her having any interest in my autism. All she ever wants me to do is touch my nose with my eyes closed, or kick my knee when she hits it with a hammer. She's not interested in my thinking at all.

I used to trust professionals in the mental health field until I became a professional in the mental health field. The amount of clinicians who lack clinical judgement is absolutely appalling. Like, one of my former coworkers who touted themselves as being experienced with ASD is one of the people who bullied me out of that agency. And the amount of psychiatrists I've talked with who think they have a grasp on what is/is not "normal" behavior while completely ignoring context? Absolutely maddening.

On the one hand, I'm happy that you've created such a good environment for your daughter that her challenges aren't ringing the alarm bells. That's frickin' amazing. But I definitely get how disheartening this is, to know the challenges are there, but nobody else seems to want to consider a point of view that does not align with their own...

Mainly back pocket for when the time comes b/c odds are it will come - once the life demands exceed her compensating/masking abilities, structure and support. Fortunately we've been able to get her OT and social skills based on one-off DXs. That's more support than I had at her age. I was mostly invisible in middle school; she's faring much better with good school culture and staff. However, her last soccer game was a mess of meltdowns and a panic attack related to the sensory and social demands. She's playing again this season, so willing to practice managing these challenges. There is also financial support in this state if we had a diagnosis which I would imagine using if her quality of life dipped due to teenage social demands. Don't get me started on police encounters. I guess we cross that bridge if/when the time comes.

I am Autistic and have GAD, so I like being prepared.

Financial support? I'm curious what that is or how it works.