Diagnosis Question 38y female ADHD w/ ASD traits.

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Hello! I recently discovered at the age of 37, that I believed I am on the autism spectrum. I read everything I could and talked to my therapist who agreed with me. She also believed I could have ADHD. I searched everywhere around where I live for a doctor that does evaluations and found one that would take me. I had a hard time because a lot of places were telling me they would not do adult evaluations. Long story short, I did the ADOS-2 module 4 and SCQ ( my mom is dead, no parents) and she said I have many ASD traits but because my face is VERY expressive and I seem to get jokes that means I am not autistic. I was a bit shook because I have seen others with a diagnosis who are as expressive as me and even get jokes....though I often laugh and it takes me a long time to get the joke but I will pretend I get it .

My official diagnosis is "ADHD inattentive type mile, with ASD TRAITS" . That last part really bothers me. I want it to say yes you are autistic or no , you are not autistic. Meanwhile I really REALLY think I am autistic and she couldn't see it. I feel like an alien. ADHD does explain some of my traits but not all. I really don't believe in self diagnosis but I think its ok for others. So I am just struggling wrapping my head around it. Am I autistic? Am I in some border spectrum . Thank you so much for your thoughts and for reading this. I will log in soon to see if I get any replies. Stay healthy all of you. Amber

Does sound like she was searching for things to exclude you as ASD. The not getting jokes thing is certainly not true for all of us. Michael McCreary, the autistic stand-up comedian is proof of that (I'm listening to his book "Funny you don't look Autistic" presently and his voice impression of Temple Grandin is hilarious ). The too expressive face comment doesn't sound right to me either. If flat affect was is necessary characteristic, why isn't it listed in the DSM-5 criteria? I thought stereotypical AS has a fairly an expressive face.

Ummm....Hannah Gadsby? And a million funny threads on this forum? I get jokes, but not all. Some autistics don't have a sense of humor. Some neurotypicals don't either. I am extremely expressive when I am happy, and stone faced when I concentrate or am upset about something. It depends. I also think this is one of those autism things where we tend to be extreme in either direction, but seldom anything in between.

The Ados is weighted towards a male presentation, and focuses on external expression, see https://www.emerald.com/insight/content ... /full/html People doing assessment

There is a large amount of overlap between autism and ADHD. It forms a genetic cluster together with Tourette's Syndrome. I think your diagnosis is pretty useful because it mentions autistic traits. Looking for reasons to exclude something is part of the diagnostic process.

What I hear from women who were diagnosed with ADHD initially, when it is either wrong or a comorbid, is that ADHD just doesn't explain the extent of the communication problems they experience.

Welcome on WP!

Autism has several different reasons. Getting jokes isn't uncommon if your brain don't has problems with language processing. Lot's of facial expressions are a hint that you are emotional communicating if it comes to this. Do you get the feelings of others by feeling the same way that they do?

bummer

Hi ambernaut, I know you're disappointed at not getting a clear cut official Yes or No to the question "do I have autism?" When you go for a professional assessment you don't have 100% control of the outcome.

Autism is not necessary any more glamorous or cool than ADHD. Its clear that the assessor recognised that you do not have a brain that operates with a standard neurotypical operating system and you have both ADD and ASD qualities mixed together in your cocktail of quirkiness. You are are officially neurodiverse and a glorious oddball like the rest of us. You are very welcome at Wrong Planet and I look forward to reading your contributions to the threads.

You diagnosis means that you will benefit from learning about both ASD and ADHD. I can recommend the “More Attention Less Deficit” postcast by Ari Tuckman if you haven’t already found it

Hi Amber and welcome to WP

Personally I hate grey areas and like to be able to place things in distinct 'files' in my mind. Had I not been given a definitive diagnosis one way or the other I would have needed to pursue the matter further until I did.

The logic that has been applied regarding facial expressions and getting jokes seems faulty to me. Most of us have learned to imitate or reciprocate facial expressions. As a child I recall smiling and thinking it an odd thing to do but it seemed to be the done thing. Still feel like that at some point most days. Same with jokes - I can usually understand the mechanism of the joke and what its trying to do but its often either not funny or I am completely indifferent to it. I like humour though - mainly observational, that focuses on the oddities of everyday language and behaviour.

I cant really see any problem with you self diagnosing and identifying with ASD in any case.

It's always so frustrating knowing how many women go through this, especially if you have both ASD and ADHD. ADOS is very much geared toward males, as it was created through researching only men and boys. You are most likely high functioning ASD as well as having ADHD. I had a similar diagnosis, where I met the criteria for ASD but "not autism" and was misdiagnosed with SPD, because the tester believes my autism traits can be attributed to that. If I were you, I would seek a second opinion. As my tester said, it is just her opinion, her interpretation. People with prominent ADHD traits can have those traits overshadow their ASD traits. For instance, talking a lot and being highly animated overshadowing your discomfort of the social situation and your uncertainty social cues to stop talking, let the other party talk, or to ask reciprocal questions (eg How are you doing?). I understand why people give up and just self-diagnose. It would be nice to have a doctor recognize my ASD and the life experiences of my family and myself as valid. Many people don't accept a self-diagnosis and there's even a lot of public hostility toward self-diagnosis. It's unfair and extremely judgmental to discard someone's experiences and feelings like that. Don't give up and keep self-advocating. No one knows how you feel better than yourself. Know that this forum is very welcoming of anyone with or without ASD, people with other neurodiverse diagnoses, and those who are self-diagnosed. This is a safe place, a sanctuary, for anyone seeking help or understanding. You are most welcome here.

Also, ADOS was originally designed for use with Children.

There may be a lot of observation, but perhaps not enough asking of the person. I have just had a slightly mischievous (or maybe cynical) thought that when applied to Adults, it measures all the ways that "But you don't look autistic".

This lecture by Judith Gould is very informative on the subject.
https://www.youtube.com/watch?v=USlS8me8pB0

If a person has been patiently "Taught their manners" and has learned that, for example, they Must sit still regardless of just how uncomfortable that is, then ADOS will most likely pick up that they can sit still and don't stimm, rather than the inense sensory or social discomfort.

My understanding is that ADOS was used as a tool for evaluating interventions with children, so would be used to establish a baseline, then the intervention (such as ABA) might be applied for a time period, then a second use of ADOS to determine whether the "Symptoms" of autism were increased or decreased.

Last edited by rowan_nichol on 07 Apr 2020, 12:29 am, edited 1 time in total.

Huhh!! !! !! !! !

I understand that some members are disappointed with the evaluations you have had. However, I can't see how it's helpful to repeat myths about specific test like the ADOS-2. It runs the risk of undermining the confidence that others members may have in their future evaluations, who may then doubt the legitimacy of their diagnosis if they read on a thread that the test they underwent is invalid for some reason or for certain subgroups (eg females).

To set the record straight - The 1st edition "ADOS" came out in 2001 and yes it was created using observations of mainly males. That test is now outdated and is no longer used because it needed to be better. It was replaced by the 2nd edition "ADOS-2" in 2012, which used both boys and girls and men and women to norm the test and create the diagnostic algorithms. I'm trained in the ADOS-2 and do evaluations. Its not perfect, but it is the most evidence supported observational test for autism at the moment.

To clarify, you and I are both saying the same thing, so how is it a myth? ADOS was created with males in mind. ADOS 2, however, has a long way to go, despite being the current best "algorithm". See below.

ADOS 2 and Females on the Spectrum
https://molecularautism.biomedcentral.com/articles/10.1186/s13229-016-0073-0
https://www.spectrumnews.org/news/diagnostic-tests-miss-autism-features-girls/
https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00428/full
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6591689/
https://sparkforautism.org/discover_article/are-girls-with-autism-hiding-in-plain-sight/
https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5040731/

Other ways in which ADOS 2 can lead to misdiagnosis:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5813679/
https://www.ncbi.nlm.nih.gov/pubmed/31379625

Since you have identified yourself as a medical or psychological professional, you could "be the change you wish to see in the world" and help your clients and the general public by helping to account for these discrepancies when making a diagnosis. You can also help provide feedback to the American Psychological Association by submitting a proposal for changes, corrections, or clarifications to the DSM 5. The system may not be perfect, but the only constant is change... but it takes courage to help promote change. https://www.psychiatry.org/psychiatrists/practice/dsm/submit-proposals

To correct your assumption regarding my experience with ADOS 2. ADOS 2 testing specified that I meet the criteria for ASC; however, it was the opinion of my tester that because I could hold a conversation and could sit relatively still in a chair despite observable stims she reported, sensory issues I made her aware of during testing, and being unable to maintain eye contact, that I must have SPD instead. A diagnosis that both my psychiatrist and general practitioner disagree with. I am seeking a second opinion. Until then, I have been correctly diagnosed with ADHD for a third time (first time I was tested for it though). I acknowledge that ADHD symptoms make it even more difficult to diagnose ASC or autism because symptoms both overlap and contradict each other. If you are a a. a female, b. an adult, and c. with ADHD then it makes it more difficult for the observer to diagnose.

If we are both saying that assessment of neurodevelopmental disorders such as ASD and ADHD is imperfect, particularly for females and adults, then yes we are definitely both on the same page. I have a child with ADHD & ASD, who because she was a girl was diagnosed late and so missed out on early supports.

I don’t see the ADOS-2 or even the DSM-5 (or ICD-11) as the biggest problem. Which is what prompted my reply to your comments. Even if these were perfect, then we still have the problem of clinicians who don’t understand the highly varied presentation of autism and so then rely on stereotypes when making assessment decisions. I’m trying to address this problem in my work in training and supervising student psychologists and making sure they know how to recognize masking and camouflaging (compensation) and teaching them to break free of stereotypes or how ASD presents in a client, particularly when assessing adults and females. Also, I'm telling them that things like over preparation (e.g. supplying a 30 page summary of their own symptoms) are possible symptoms of ASD anxiety and obsessive interest. Good assessors should listen to what a client says as the client is the expert on their own experience. That said, ultimately the assessor needs to integrate all the information and use their expertise to make a final diagnostic decision.

The changes I wish to see in the world include having autism informed assessors who don't make miss the signs and end up denying or delaying a valid diagnosis and all the distress and confusion that can cause.

Hi Steve.
To be clear, I do not care about glamor or being cool. I just care that I am working from the correct information. Thank you for the welcome and it is very nice to meet you. I will check out that podcast. I love podcasts.

Thank you all so much for replying!
I really appreciate that. It is helping me. I will try to reply to each of you but I am still figuring out how this works. I look forward to browsing and reading all I can because I am really interested in all this.

Hi ambernaut,
My comment about autism being somehow more glamorous or cool was intended to be facetious not a judgement. No offence was intended. It just makes me sad when I observe that societies acceptance of autism in adults is growing faster (but not fast enough) than the acceptance of ADHD in adults when both can be disabling.

If you like podcasts then check out Spectrumly Speaking. It's a podcast dedicated to women on the autism spectrum. The link is below:

Spectrumly Speaking podcast