Awaiting Diagnostic Results

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CW: ABA

Hi all,

First of all, thank you to anyone willing to take the time to read this. I'm getting quite a lot off of my chest all at once.

I am very anxious to be writing this. I have been following several forum discussions on this site for some time now, but I finally got the courage today to register and participate. I am a 29 year-old woman and I think I have autism. Growing up, I was "unofficially" diagnosed with ADHD. My mother was very protective and highly skeptical of special education so she pleaded with my doctor not to give me a formal diagnosis. I had trouble with attention and emotional regulation all throughout school, so I had to see the doctor about teachers suspecting I had ADHD several times growing up. Each time, the doctor would say that I had strong ADHD symptoms and each time my mom would convince them to suppress a formal diagnosis our of fear of how I would be treated in the education system. Despite my struggles, I skated by and graduated just fine (I could have graduated two years early but I spent the last two years of high school obsessed with participating in show choir and took two years of elective classes so I could stay in show choir).

I have always had an obsessive personality. I develop very strong and intense interests and then throw myself into them without proper regard for the amount of time I am spending on them. Right now my special interests are Happy Planning (utilizing pen and paper planners on a disc-bound system, Happy Planner is brand name btw, with a heavy emphasis on personalized decor and stickers), autism research, and Harry Styles (his solo music, NOT One Direction).

I have also always had emotional regulation difficulties and fairly frequent sensory or emotional meltdowns. As a child these were viewed as "tantrums" even though they could last upwards of two hours. As an adult, they are typically shorter (a long meltdown for me is about 30-45 minutes). For a long time, I called these meltdowns my "panic attacks" resulting in an incorrect diagnosis of panic disorder. In an attempt to treat this "panic disorder", I was given an SNRI (effexor) which resulted in a severe manic episode, a three week psychiatric hospitalization, and a diagnosis of medically-induced bipolar I disorder. Following that manic episode, I fell into a near-catatonic depression for about four months where all I could do was binge watch familiar 90's sitcoms in between naps.

I also have quite a lot of social difficulty. I tend to overstep boundaries, monopolize conversations while redirecting them to myself and my special interests, not be able to read my own emotions, and project my emotions about particular subjects and events onto others (theory of mind issues). I never really struggled making friends, but I do struggle keeping them. I have two "ride-or-die" friends from college that stuck around and one from middle school and I'm super grateful for them.

Shortly before my mental breakdown, I was working as an ABA therapist because I have a strong affection for autistic persons (especially children) and I drank the kool-aid (my misunderstandings about ABA were rooted in my psychology degree and the opinions presented to me by neurotypical autism pathologizers). During this time, I couldn't understand why my emotional meltdowns increased so heavily and I just felt so disgusting after coming home from work. I will say that during my time as an ABA therapist, I frequently rebelled against the programming and reacted to my clients' needs from an empathetic perspective. Most specifically, I rejected planned ignoring programs in favor of comforting my clients during "tantrums", and I also didn't consciously force compliance on my clients. Regardless, I was uninformed and thought that I was helping these children. I even completed a year of graduate study in an autism specialist/aba masters program. I excelled in the autism studies courses which I focused on for a year, and dropped out when the only classes left for me were clinical ABA classes.

I also experienced a 3-month long shutdown period during my undergraduate study where I was house-bound, depressed, and isolated myself. My communications with others were limited to very infrequent text messages, and I was mostly mute during that time despite living with my uncle.

Fast forward to present day (sorry for the non-linear recollections above): I am currently working as a special education preschool teacher in an autism program, and my students light up my life. After persistent struggles in my marriage due to my communication and emotional regulation issues, I am finally being assessed for autism. My husband has noticed my issues and became convinced that I have borderline personality disorder (BPD) but my psychologist has ruled that out for me. Three and a half weeks ago, I went in to be formally assessed for ADHD and autism. The problem is, there are tons of things I know I left out communicating to the psychologist about my struggles. I am also a really strong masker so I'm worried that I passed as neurotypical in our discussions. During our next session, the psychologist administered about 6 neurological tests to me. I can remember four of them: the wecshler intelligence scale, a facial recognition test, the stroop color test, and the tower of london test. The problem is, I left feeling like I did really well on those tests. I'm worried that I may have passed as neurotypical in that regard too.

After my assessments, I have been extremely anxious and depressed. I have my diagnostic results meeting in four days. I'm having identity issues because after my time working with autistic individuals, I identify very strongly with the community and I feel not receiving that diagnosis will leave me feeling more alienated than I already do. It may sound strange, but after watching my students' struggles and especially their strengths and accomplishments, I just feel such a strong kinship with them that I've never had before. Their meltdowns look like mine, their "atypical play" looks like mine did as a child. I was hyperlexic and hyperverbal as a child (still am). I don't know... Does the possibility of not receiving a formal diagnosis make me "less autistic"? Because in my experience I'm autistic as hell, and it's a point of pride for me to have that experience. I don't want that to be taken away from me...

I guess until you see the results, you do not know what is on them. The waiting can be difficult.

Welcome to Wrong Planet

I see nothing wrong with contacting the clinician who assessed you and giving that person the information you forgot to give.

I am glad you found out about ABA and are past that part of your life.

One thing that that really bothers me and discredits ABA for me despite all the “evidence based” success claims is something you brought up in your post. Autistic meltdowns are often described as “tantrums” and “tantruming”. If you don’t know the difference between an autistic meltdown and a tantrum you should not be treating autistic people.

ABA often comes up as a topic of conversation here. At some point in the future if it is not too traumatizing you can give us some insider information. Now is probably not the time, you need to deal with the upcoming results from your assessment. There are many people here that were diagnosed as adults that can commiserate and help you through it.

Welcome.

Does not being professionally diagnosed as autistic make you "less autistic"? It depends on the context.

If you are autistic but end up being misdiagnosed as neurotypical, then a diagnosis either positive or negative can't make you more or less autistic.

If a person isn't professionally diagnosed as autistic then the requested practice on WP is to refer to oneself as "self-diagnosed". No problem there. WP absolutely welcomes people who are self-diagnosed. Unless someone is diagnosed as autistic as a child, most adults start their journey by self-diagnosing.

I think the important thing that you've already determined is, regardless of whether you are autistic or not, you have a strong bond with the autistic children you work with and help. That is THE most important and wonderful thing. Thank you for the work that you do.

I think you've been given great advice to contact your assessment person and give that person additional info. That's being real. That's being you. By doing that, perhaps the act of asking for the consideration of additional information might be in and of itself a factor your assessment person takes into account just as much as the information you give.

Let us know how things turn out either way. You're welcome here either way.

I was diagnosed with "mild to moderate" autism by a psych experienced with ASD in adult women. This is despite the fact that I am a "warm" person and mask heavily: my self-reporting was very "rosy" and I missed the ADOS-2 clinical threshold for ASD by one point (yes, I am one of the up to 33% of ASD women who test as NT). I love to talk, but was severely quiet with my psych. I am meeting with my assessing dr to discuss the ambiguity of my test results which is giving me restless nights. Similar to your concern, I have want to definitively belong. I am tired of being on the outside of NTs, the edge of women, the edge of engineers and now... according to the test the edge of ASD.

In college I was put on an antidepressant, which made me manic and then I was diagnosed with bipolar. Yada, yada, yada... I could relate to more of your post but am in a rotten mood b/c my husband moved some furniture around yesterday. Well, maybe that's not IT, but it contributed.

In any case the diagnosis is really GOOD for me, and really HARD.

Wishing you well … a follow up appt is exactly what I am doing, and I plan to explain why I "clammed up".

Welcome to WP!

Your experiences are your experiences, and nothing can take them away. Whether or not they're autistic experiences is what this test will determine.

I'm not quite sure I understand what you mean by the notion that receiving a negative diagnosis will make you less autistic. The evaluation doesn't make you autistic or not, it tells you whether you are or not. It's possible to be misdiagnosed, or to have such a mild case that the testing measures can't readily pick it up, but autism is an uncommon condition (less than 2% of the population has it) and statistically speaking, if you get a negative result, it's most likely because you don't have autism. It should be noted that autism and ADHD often get mistaken for one another and have overlapping symptoms. It's possible the symptoms you're experiencing are those of ADHD, especially since you've essentially been diagnosed with that repeatedly already.

Thanks for all the supportive replies! I'm really happy to be finally posting on WP after years of just reading other peoples' posts. I am so excited that my feedback appointment with the psychologist is tomorrow and I get to learn more about myself regardless of the results. I've had too much social anxiety to call the psychologist and offer her details that I may have forgotten, but my husband has been reassuring me that I'm lucky enough to have very easy access to a second opinion if I want one. I'm still experiencing extremely high anxiety about the results. I had a panic attack late last night and had to take a mental health day off from work today to recover. I'm really tempted to take tomorrow before the appointment off as well just to compose myself and do self-care things, but as a teacher I feel REALLY guilty for taking days off...

I had my follow up appt yesterday and it was cathartic. It was reassuring. I slept really well last night. I could really use more reassurance on a daily basis. Rhetorical, ironic Q: Who would do that for me?

Wishing your appt provides some relief or direction for you!

Hi all,

I've been really struggling since my follow-up appointment. My worst clinical fears were realized. The assessing psychologist deemed I was "nowhere near the ballpark of autism" which I know is absolute BS. She dismissed all of my lived experience, and the careful reports from my husband and both of my parents (which heavily indicate autism) on the grounds that I "make eye contact" and "have a good sense of humor". Of course I simply have borderline traits... Sucks to be female. Needless to say, I'm waiting to get a second opinion. Interestingly, after getting the cognitive test results back my husband and I who both know a little about autism are even more convinced that I'm on the spectrum. We're working together to try and advocate better the second time around.

So sorry. Bummer to say the least. Will the second opinion be educated?

A women in my support group is going for a second assessment as the first was similar to yours. My ASD therapist is frustrated by the ignorance in the medical community. What bologna about making eye contact. I don't need to sell you on this, but to explore the topic since I have been thinking about all this stuff for a few months now: I make eye contact (my NT assessor noted it was unusual ---- I would not that is so for an NT, but I claim my style is normal for ASD ). I suspect the operator of a local business is ASD b/c of his eye contact: an intense stare. (Just like mine when I don't mask). It creeps out my NT husband a bit, but it feels natural to me. Look (stare) or don't look, it's the NT in between stuff that's unusual to me. I love to watch my NT son with his NT gaze, at me, away up to the right, over, at me, away. My ASD-like daughter is like me: staring, or not.

Wishing your second opinion resonates better.

Was that really all the doctor said? That you can’t be autistic because you make eye contact and are funny? Did they give you any social tests like the ADOS? What did the results of the cognitive tests show? Did you talk to them about more female-presenting autism? If so, what did they say?

StarTrekker, yup. That's pretty much all the doctor said. I was not administered the ADOS which had initially pissed me off (before our follow-up) but my husband "reassured" me to trust the doctor. I just had my first individual therapy session since the day of the follow-up yesterday and my therapist was pretty upset by the psychologist's dismissal of my lived experience in conjunction with her use of harmful stereotypes, and lack of any directly autism-related testing. The cognitive tests revealed that I have a large split between verbal and nonverbal IQ scores (in my case, scoring significantly higher in verbal IQ... not all that surprising for a chameleon like myself) but overall I scored as high-average intelligence. The psychologist even made some awful comment about how I didn't test "low enough" in any area of the IQ scores to indicate autism. She said she would expect a "bigger split"... That infuriated me. I was also screened for personality disorders for some reason and the data indicate that I have quite a few borderline traits (often misunderstood female-presenting aspie traits) but not enough to warrant a BPD diagnosis. Basically the psychologist said that she has no new diagnoses for me but the testing indicates that I am highly sensitive. She didn't even mention my stimming, my rigidity in favor of routine, my special interests/obsessions, my significant social difficulties, my meltdowns as described by my parents and husband, my sensory sensitivities, or my preference for solitude or social situations with two or less other people. I'm determined to get a diagnosis so that I can receive appropriate accommodations in university, and I am required to continue my education for my career, so I'm feeling pretty trapped in limbo at the moment. I did specifically request a second opinion from someone experienced in working with adult women with autism so I'm really hoping my next round of testing works out. Oh, and I'm making sure she administers the ADOS to me...

A split between verbal and nonverbal IQ scores is very common in autism, and higher verbal than nonverbal IQ frequently presents in "higher functioning" individuals. A gap of 10 points or more is considered statistically significant. My gap was 40 points.

I'm a little surprised the doctor didn't administer any kind of social testing at all. The ADOS is quite specialized and requires specific credentials to be able to learn to administer it, but no testing at all is a bit of a red flag, I'll admit.

What kinds of accommodations will you be seeking at uni, out of interest?

I'm glad you haven't been discouraged and that you're continuing your quest. Thank you for sharing with us. We're here for you either way.

It is so critical to be seen by a specialist in the female presentation of autism.

Also to clarify that you can identify whatever way you choose to here and experience equality amongst peers.

@karathedragon, I can tell you've done your homework!

Sounds like me. BTW - I mask to such a high degree that I measured NT on the ADOS. That pissed me off (as I am don't like being an Outsider of Outsiders). On my follow up appt, my psychiatrist assured me "that's your Autism", "that's your Autism" - he implied "forensic" (better) diagnostic tests would be required for my type.

Here's an Oct-2019 (small) study. From Discussion section:
"In addition we propose that greater social motivation (Sedgewick et al. 2015) and better non-verbal communication (Rynkiewicz et al. 2016), both characteristics of the female autism phenotype, should be investigated as factors that can lead professionals to rule out ASC as a possible diagnosis when a females with autistic difficulties presents for assessment."

"Our findings also highlight the costs of the bias against female ASC diagnosis. In line with studies of adults with
ASC (see Howlin and Moss 2012), internalising difficulties were common amongst participants. All but one
reported clinically severe anxiety, and levels of distress were elevated, emphasising the importance of identifying
women with ASC in order to provide support, including for co-occurring emotional difficulties."

Source: https://www.researchgate.net/publicatio ... _Phenotype