Got a 7 in ADOS2, but diagnosed with something else??

Post Reply New Topic

I didn't even know what it was until today. Apparently because I am able to communicate "well" with the person conducting the test (though she noted poor eye contact, interrupting, talking too long about a topic *which was on my special interest*) that I am more suited to the diagnosis of schizotypal personality disorder. She said my developmental problems have to do with my ADHD and though she considered HF autism, she decided that the schizotypal diagnosis fits me better. She said it was odd for me to come into her office with a weighted shawl and noise canceling headphones and weird to walk around with a fidget toy. I dressed like I would if I were working out or going to sleep because I wanted to be comfortable because I knew it would be a stressful day. She said my social problems are apparently a lifelong issue that needed to be addressed and that's why she couldn't just go with only ADHD. She said I am well past the age of triggering schizophrenia and that she has every reason to believe that I will never have it. She said not to be put off by that part of it. What about the over-sensitivity to touch, scents, and sights? Is she right? What about the flapping and the banging my head off walls, and needing pressure on my head to calm down? She said that was just anxiety. I feel so, so alone right now. The struggles I've faced, the violent bullying and being taken advantage of because of my naivety would not have been an issue if I were as untrusting as she says. If I'm so untrusting it's because of past experiences, not this. I always make excuses for people and try to see the good in them. I spent over $1,000 on this and don't know if I could do it again. This whole diagnosis process has been so draining and I just feel like giving up. I'm still left with, "WTF is wrong with me?!"

(Big, heavy exhalation of breath)

Just come here from your other thread where you’ve linked here from... I’m not sure what to say: it sounds to me like you may very well be right that this is a misdiagnosis, but I’m not a medical bod, nor have I ever met you irl... ...is getting a second opinion on a diagnosis or course of treatment a thing in the US?
Or would that mean starting again from scratch with all the cost, stress and so forth?

Regardless of the words written on a piece of paper you are yourself, a young neurodiverse woman with pronounced aspie traits, and friends you’ve recently made here: you’re not wholly alone (((Nic)))

And... (stern voice, but warm heart) ... nothing is “wrong” with you.
You’re a charming eccentric with many challenges that most humans don’t experience, but that doesn’t make you “wrong”.
(Stern bit over)

I’m so sorry you’ve been through all that gruelling process only to come out of it with a label that doesn’t fit

Thank you!! I am teary eyed reading that. I was so mad when she said that she couldn't just give me the diagnosis I was seeking because it would make her a bad doctor. Upon reading the report, it just didn't make sense though. I received a 7 on ADOS and she still thinks I don't have it? She said, "Why are you so stuck on this diagnosis? If you have ASD or schizotypal disorder the treatment would still be similar." It's not about the treatment, it's about understanding myself and I don't fit what she says I have.

Quote from the report:

Overall, Ms. Manuel’s scores on the ADOS-2 Module 4 algorithm were consistent with an ADOS-2 classification related to Autism. Her overall score of 7 (Communication and Social Interaction) did reach the cut off criteria of 7 for autism spectrum classification but it did not reach the criteria of 10 for autism classification.

Later in the report:

In addition to reporting her perceptions of having a number of autism symptoms during the
clinical interview, she also endorsed a number of symptoms on psychological measures that may
better explain her perception of her symptoms. Specifically, she reported her symptoms as long-
standing, having inappropriate or constricted affect, having excessive social anxiety, and
experiencing some odd patterns of thinking. On the measures, she also endorsed symptoms
related to having some subcultural normed beliefs, excessive social anxiety that does not
diminish with familiarity, and engages in behaviors that may appear odd or eccentric. These
symptoms are highly related to a diagnosis of Schizotypal Personality Disorder, which is a long-
standing pattern of interpersonal deficits marked by acute discomfort.

:facepalm:

Just had to look up what ADOS is!
(I’m undiagnosed: so have all these joys to look forward to)
I did find reference to ‘false positives’ with relation to ADHD, Schizophrenia and Psychosis: that combined with the general tendency of autism perception to focus on children might explain why misdiagnoses occur.

I think I know what you mean: I don’t want to be “treated” in any sense, I want that aspect of my sense of self to be confirmed so that I can stop worrying about the possibility I might be a deluded fraud.

Awww, don’t tell me that, I’ll be all touched and smile faintly!
It is quite gratifying to know though: hope you feel a bit better now

Just read you’re posting of the report: that could be me!
I did wonder what would happen when the US scrapped ‘Aspergers’ as a distinct diagnosis unto itself...
“Subcultural normed beliefs” give me strength
By that measure over half the teenagers in the western world are exhibiting schizotypal tendencies!

In my case I scored a 5 (!=NT) on the ADOS-2, but my clinician saw past that and gave me an ASD diagnosis. Outwardly I am very "high functioning" but he saw that inwardly I am working x10 to do so. I was initially (mis)diagnosed depressive (in my 20s), then (mis)diagnosed bipolar (in my 30s). When I was diagnosed ASD (in my 40s), it all made sense (as you are seeking to obtain), even for the women before me: my ASD-like grandmother who was (mis? or under?)diagnosed schizo, and my ASD-like mother who was (mis? or under?)diagnosed depressive. Such brilliant women, shamed and unsupported. I'd like to think that the misdiagnoses will stop one day which will be a sign that the community is educated, and ready to support (and celebrate) us.

They say many ASD folks have distrust of medicine --- b/c of situations like this.

What did your assessor say when you asked all those questions you posed to us? I met with my assessor twice after diagnosis for clarity (and I gave him feedback). We paid good money for this; that includes understanding.

(Additional bit of thinking after having slept)

I’m going to back up what SharonB said above with a quote from the NHS’ web pages on autism:


Source: NHS, Signs of Autism in Adults

In short, my current thinking is you’ve learned to communicate with/interact with other people well enough to confuse professionals.
Leaving misdiagnosis issues aside, this is something you should be proud of: it’s actually an achievement all of itself!



I was curious so I had a look at your member profile to see if there was any indication as to what my bonding picks out above.
(I hope this doesn’t feel invasive.)



I think, if you talked about the interests I’ve bolded in the interview, it’s possible your clinician may have (unwittingly no doubt) allowed a dim view of these interests to cloud her judgement...
we may have the reason why she’s gone for SPD.

:facepalm: indeed!

I’m also thinking it must be very distressing to have been labelled with a tag that has, if anything, even more stigma and negative cultural associations than autism. Got to get a move on for work now, but think after all the quotes problem grinding above I should end on a note of kindness and reiterate myself from above:

Regardless of the words written on a piece of paper you are yourself, a young neurodiverse woman with pronounced aspie traits, and friends you’ve recently made here: you’re not wholly alone (((Nic)))

It sounds to me like there is a strong possibility that the psychologists you saw (I assume there were at least two as I believe the ADOS is only valid with at least two observers) are not specifically trained in using the ADOS for assessing women. It is well known that assessing women as if they were men leads to women being underdiagnosed.

I can really feel for your agony over this. There was a moment during my assessment where I thought I was about to be told that I didn't meet the criteria and I came close to panicking.

It sounds to me as if you already know in your heart that you are autistic, and part of what you are experiencing is something I have a lot of: feeling like my reality is being challenged because some neurotypical person can't accept how different my brain is. If you feel like the therapist is gaslighting you, then this is probably quite close to my experiences.

I would definitely suggest that you see if you can find someone who is actually trained in assessing women. You should definitely seek a second opinion.

https://www.webmd.com/schizophrenia/sch ... symptoms#1

If you're over that age you're ageing very well.

https://www.spectrumnews.org/news/diagn ... res-girls/

The Ados is not entirely reliable for women.

Specific to schizotypal personality disorder is magical beliefs. Whereas an autistic person may be very interested in a magical topic without necessarily believing in it, schizotypals tend to be superstitious. How do you feel about that distinction?

Anyway, a personality disorder and autism shouldn't be treated the same way. It's a recipe for disaster. How do you treat autism? I don't get it.

Nice to see you, Underwater.

Nice to see you too

I got on my soapbox there, didn't I? Getting blunter with age, I'm afraid. I guess I got upset because I've also experienced a professional explaining my sensitivities as caused by anxiety, when it's the other way around.

Yep...some shrinks seem to have a knack for doing that.

They also tend to have outmoded ideas about autism.

I'm not sure how the OP ought to handle this situation. Is it possible to get back to this person and ask her how she differentiates between mystical aspies and schizotypal PD?

Also, if I had a penny for every eccentrically dressed aspie I've met.....are schizotypal people somehow more eccentric in the way of clothes?

And is she aware that the Ados slants towards the male presentation?

I get it that you have a million questions, OP. Sending you lots of love.

I do think that seeking a diagnosis as an adult, while finally holding a steady job, is definitely a factor. I certainly struggle there, but medication helps. She did say that I am highly unlikely to develop schizophrenia as I am in my 30s now. It is weird though because schizotypal personality disorder is considered a part of a schizophrenia spectrum. It is interesting to think how I would have been diagnosed if aspergers were still a diagnosis; however, she said she suspected I had SPD upon meeting me because of the weighted shawl and mistrust of mental health professionals (I was hospitalized as a teen and it was a horrible experience). She instead saw that as me being paranoid and thus confirming her theory :sigh:. As for subcultural normed beliefs, that truly is most young adults nowadays. Especially living in New Orleans, it’s hard not to have a deep respect for diversity and subcultures. I’m not really sure what subcultural normed beliefs she is talking about though. :shrugs:

Thank you, Karamazov! I needed to hear that. This diagnosis does have a negative connotation. I told her, “How can I be taken seriously ever again? Ever heard of the ‘crazy b***h’ (when men say it about a girl) or the ‘crazy hippie’ (when disagreeing with me about something)? I don’t want to be immediately shut down because of this label.” I definitely think my interest in rocks and crystals, symbolism, sacred geometry, and hermeticism helps my case. I don’t actually believe that rocks and crystals heal. I am more interested in their visual appeal. I make jewelry from natural cut rocks and crystals and have had a collection of rocks I found interesting since I was little. It was all about the rock’s formation, what was embedded in it, and the layers. I love symbolism probably because it’s a visual representation of what people want to convey, sacred geometry because it always fascinated me how certain ratios (namely the golden ratio) can be found in both the micro and macrocosms and help us to understand how the world works from a unique perspective, and Hermeticism because of its secrecy and rituals. I have always loved rituals. I studied Catholic, Wiccan, Buddhist, and Hare Krishna rituals because they are just fascinating to me. Rituals are like visual forms of prayer or visual forms of conveying beliefs. I follow Buddhist philosophies because I find them useful and practical. I don’t believe in mysticism or even a God. I don’t have conversations with ghosts, angels, aliens, or a deity in prayer or in any form. That’s just not me.