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

Post Reply New Topic

Hugs, Nic.

I don't know what I got on ADOS. All it says is I was well above the cutoff. It doesn't even have a description of how I behaved in that part of the assessment. It's odd because all my other tests were analysed in detail with graphs and anecdotal descriptions.

I wonder if you can take your assessment to someone else who can reinterpret the scores? You wouldn't need to pay for all the tests to be redone, just reconsidered perhaps with a short meeting or interview to get to know you?

I also hope you have gone for your review with whoever wrote the report. I was allowed to challenge anything if I disagreed (although my result was indicative of autism). The bit about the weighted shawl makes no sense to me. I don't understand why that was so significant. You can wear whatever the F you want to wear. I basically wore pyjamas, and sat on the floor the whole time because I don't do chairs.

Regardless, please stick around as you are more than welcome here.

Birds of a feather and all that.

That is so incredibly sad! My mom thinks she might have asperger’s as well. My grandfather, we speculate, might have had it. My cousin (male) has it. It just feels nearly impossible to obtain a diagnosis if you’re a woman. You’d have to be much worse off to get any validation from the tester I saw. I was also misdiagnosed with bipolar when I was younger. It’s always something except for what is obvious to everyone except the drs. They REALLY need to begin accounting for how women tend to mask more than men, have better social skills (generally), have less noticeable stems, try to blend in by mimicking, and have different special interests that are more like a girl. It sounds like your family is filled with strong, intelligent women. I am sorry you weren’t taken seriously as well. I know you also ADHD and It doesn’t help that ADHD makes people talk nonstop about special interests. When I read about what women have gone through because of this, it makes me wish there were a way we could petition or raise awareness of how testing and testers should keep the brains of women and those with ADHD in mind when conducting testing.

There was only one woman in the room during ADOS; however, there was a creepy double-sided mirror, so someone could have been watching to interpret. I got mad at her when she said that high functioning people don’t communicate back and forth. I said, “Yes of COURSE they do! Adults have had their whole lives to learn those skills and women are especially talented at masking and maybe don’t even realize they are doing it.” I even told her about a guy I used to play D&D with who is now the CEO of a GIS company, making business deals and managing people… and he has been diagnosed with asperger’s since he was a child! I do feel like she doesn’t believe me and I feel completely invalidated. If I say outright that I don’t have what she claims I have then she’ll say it’s because I’m being paranoid and untrusting of her. I just can’t win. I have to get a second opinion. I have a follow up next week. I’ll post what I intend to say (I write scripts when making an argument when I know I will be upset) and her response. I don’t think she will budge as she thinks I’m being unreasonable and trying to force a false diagnosis out of her.

Thank you. I’m 32, but she said she has no reason to suspect that I will develop schizophrenia. She even underlined that fact in her report. It was the one part I laughed at.


THANK YOU!! That is EXACTLY what I’ve been trying to tell her! I have a follow up meeting and I will absolutely raise my concerns with her. What she might see as my being suspicious and paranoid is really me trying to self advocate because I feel alone here. My family doesn’t understand as my dad will just take everything at face value; my boyfriend is being supportive but he is tired of my researching it constantly and telling him my findings; and my friends say to give her a chance to know me better but say they KNOW I don’t have that. It felt good to have people believe me that I know. I was honestly thinking about not telling ANYONE I know personally about this because I didn’t want to believe it were true. I did play devil’s advocate though and researched both disorders thoroughly. There is a lot of overlap in symptoms but only on an external level. The reasoning behind those symptoms is completely different. I believe you are right that a personality disorder should not be treated the same as autism. I will continue with ADHD treatment, but seek help elsewhere if she refuses to at least have me take the SPD test (yes there is one) and the AQ. I have taken the AQ test online before, but when I sent it to her she said it wouldn’t be considered in the testing. If she is going to diagnose me with something, at least get to know me better before jumping to such a strange conclusion.

Thank you Isabella! I just hope the testing wasn't tainted by their being one person in the room gauging my behavior and not two. Also, since it was done the same day as the IQ and ADHD testing, I don't know if the results aren't skewed from fatigue. I also didn't have details of the ADOS testing. It was weird to me that she thinks I have this mystical way of thinking and yet I couldn't even tell a story without just describing what I saw and only set up a scene with a frog playing for a man and a doll. *shrugs* Thank you for always being so nice to me. I at least got the ADHD diagnosis and have on paper that I met the criteria for ASD. I will DEFINITELY try bringing it to someone for reinterpretation. I think that is an excellent idea! Thank you!

I know someone who is schizotypal. They don't stim or have sensory issues to the same degree I do. In my case the sensory and the stimming are more of a problem than the social. Since I'm agoraphobic and introverted the social issues could likely be interpreted a number of ways other than autism, although the tests for my thinking patterns showed autism.

When do you go for your review of the document? I'd be sending that person a copy of some adult autism materials ahead of time because it sounds like they need a refresher.

That’s could also be a factor, depending on what ideas someone has about autism they may just look at that alone and conclude it can’t be the case.



Have you ever read up on the history of mental health terminology and it’s usage?
I have a bit, and have views about it... which I’ll skip over.
Just a thought, but you might find it illuminating.



Yes, I developed a mistrust of mental health professionals in my late teens: my only real friend from childhood developed severe paranoia coupled with very unhealthy & dark mystical thinking... his shrink just prescribed him self-administered temazepam, which he saved up all week and took the whole lot with alcohol on a Friday night, resulting in epileptic style fits: when a couple of his other friends went to the shrink to tell him what was happening he shooed them away: apparently how the drugs he prescribed were being used wasn’t on his list of valid concerns.
A month later my friend was stalking his GP with multiple knives on him convinced she’d stolen his mind.
He was sectioned at age nineteen, and I’ve never seen or heard from him again.
(Sectioned is British slang for forcibly incarcerated in a psychiatric hospital)
The cavalier attitude of the shrink disgusted me at the time and I don’t think I’ve ever got over it.



... I’ve been rather slack about pursuing a diagnosis for precisely that reason... I’m terrified of having some tag or other that comes with a massive stigma and the insistence that I “need” to be drugged out of my mind... I think I fear insanity more than death, and perceive being pharmaceuticalised as being no longer me, and therefore no longer sane.
(How can you be sane if you’re not being who you are? doesn’t make any sense to me)



My wife has the same fascination with rocks and crystals (and fossils): no time whatever for supposed mystical properties, it’s the material beauty and internal organisation of them that she loves. And all the colours.
Jewellery making eh? Sounds intriguing... will you ever post any pics of your handiwork in the arts forum?



Like a language without words to imprison thoughts?
I get that from music having self-taught theory of music to a limited extent, instrumental music where the intellect and emotions can play and dance together free of the limitations of speech.



Yeah: I had a big thing on that when I was in my twenties, Phi is brilliant for laying out designs that fit together and flow naturally and elegantly (Architect... at the time).
I lost interest in it as a way of explaining the universe, but all my art is heavily derived from formal geometry to this day.
I love the clean, crisp mathematical purity that gives a simple muscular purity to even the most complex and fine-detailed drawing one builds out of it.



Hmmm... I’ve thought of them as like a theatre where the audience and the cast are the same group of people. Never found actual rituals that interesting in and of themselves though: the structure of the thinking behind why person a in uniform b does act c at this particular time is fascinating. It’s like a little window on how humans relate to themselves, each other and the world.



Well, that doesn’t sound very schizophrenic!
I read up on a lot of similar stuff to you without really believing it too... I think some folks struggle with the notion that one could be fascinated by a belief-system as a system without believing it... maybe NTs don’t do that?
Hmmm.... weird if so.
Prefer Stoicism myself: similar in some respects to the core aspects of Buddhism, but a much more “in the world” approach and emphasis.

The mistrust of medical professionals is fairly common among people who have been misdiagnosed and given wrong treatment.
Quite common among women on the spectrum. I mistrust a lot of medical professionals and for good reason. It's like saying doctors can't be wrong, diagnosing that as paranoia. It's basically gaslighting. She doesn't mean to, but that is the effect.

Tony Attwood says he tries very hard to keep young aspies with mental health issues out of psychiatric hospitals when they develop severe mental health issues, because being surrounded by so many troubled people is detrimental to people who have a hard time separating their own mental states from those of others.

There is a podcast called Very Bad Therapy which delves into the many ways therapy can go wrong, and why. I've found it helps me understand my experiences - also with doctors for physical issues.

I constructed a document to guide my conversation with the tester today. On the first page, I used a matrix to separate my points into categories: her report, SPD symptoms, ASD diagnosis standards and symptoms, and symptoms in girls and how it differs. On the second page, I posted two video examples of people with each disorder and a list of resources that I used to create the document and have helped me come to the conclusion that I definitely DO NOT have SPD. My mom also wrote her a letter detailing my childhood struggles with social situations, not responding to my own name, being a late walker and talker, and how I was always "overly sensitive" to sounds, touch, tastes, and smells. If this doesn't help, I don't know what will. I would simply have to seek diagnosis elsewhere. Below are snapshots of the document I sent her. I'm rather proud of it.

Well done, that looks fairly comprehensive: both the work that’s gone into it the meticulous layout, and the drive to produce it themselves help the case made out within.
Couldn’t quite read all of it (I’m accessing through a, now rather old, phone: so I got pixels when I opened the shots and tried to blow them up), but it looks like you’ve done a good job of being both detailed and to the point.

The links to contrasting video descriptions by diagnosed peeps is a good touch (I’ve watched a few of YoSamdySam’s videos too: hope I’ve spelled her moniker correctly).

It looks fairly persuasive to me, good luck with using it effectively with your tester

Thank you. I had to make the font small to fit all my points. In the PDF version you can zoom in. The results are in and it seems I will definitely be pursuing another professonal's opinion. She was unable to adequately answer how my experiences with high sensory sensitivity, stimming, and melt-downs have anything to do with SPD; nor could she explain how I do not have most of the symptoms of SPD (according to me, my family, my friends, and my boyfriend... so it's not just me). If it were paranoia then we wouldn't all be experiencing it. She did, however, continue to emphasize that her degree is in psychology (later asking me if my degree was in it) and how she has many years of clinical experience working with many autistic people. She said that she didn't use ADOS solely for her diagnosis, but also the questionaires that were difficult to answer. Example: Do you enjoy social gatherings? Do you have many close friends? I say that because for SPD the reasons they dislike social gatherings and struggle with relationships is very different than the reasons someone with ASD would.

Love your mateiral!! I watched videos by that ASD woman before. Cool! I provided my assessor corrections and clarifications for him to put in his report. He did not, so I will provide it as an addendum in the future. As Karamazov notes: case in point!

BTW, from my report: "Given Sharon's history of difficulties, she was administered the ADOS-2 to evaluate her communication and social relatedness. ... The ADOS-2 has demonstrated utility in distinguishing those who have autism spectrum disorders from those who may have other developmental difficulties. ... Sheryn’s rating was somewhat elevated but did not meet criteria consistent with an autistic spectrum diagnosis."

He verbally told me my score was 5 and the ASD threshold is 6 --- I've read that 11 or 12 is for classic Autism. Why was your clinician talking about that high threshold? Did you find the online report that says that up to 30% of ASD adult women don't meet the ADOS-2 clinical threshold? I'm pretty sure I have a link to it: false negatives (poor sensitivity).

In any case, despite my "failing" the ADOS, my report concludes "Sharon appears to meet the DSM-5 diagnostic criteria for Autism Spectrum Disorder: 299.00 (F84.0) without accompanying intellectual impairment."

He said it's a valid diagnosis and the "appears" is b/c it was not a Forensic diagnosis. He's a court witness a lot. Hopefully I won't need that.

I'm very social, I love going to parties. Too bad I can't "connect" the way others do.

Does sound like a second opinion is the way to go then: they won’t have any personal attachment to the existing diagnosis so you probably stand a better chance of getting it changed.

Her not having answers for the things that don’t fit sounds positive for when another professional reviews your case.

That sounds rather cold but I couldn’t think of another way to end the sentence that wasn’t grammatically grating

You’ve also got your submission for the review of evidence prepared, in essence: even if they want it in a particular format you’ve gathered a fair sized amount of information and got it organised.

One step at a time I suppose.

Correct. And your statement doesn't sound cold at all. It does seem positive for when someone else reviews the diagnosis. It also helps that the data in the report doesn't support her claim either. I feel better KNOWING at least that I definitely do not have SPD. That in itself is one way in which I have researched in order "to know myself better", which was is the underlying goal in this whole process. I have also come to find a very understanding and relatable support group here. Until recently, I have not known many who share similar struggles, not just with the diagnostic process, but with everyday struggles that many others do not experience. I am grateful for the process and am patient for the correct diagnosis. I have, however, discovered a center for autism and related disorders in my community. After this coronavirus pandemic quells, I will seek advice from them. Through their PDF documents for those seeking diagnosis, I noticed a great deal of different approaches, and a greater understanding of how autism affects patients during the diagnostic process. Their initial paperwork and questionnaires are much more targeted for autism or related disorders, instead of a broad spectrum or mental disorders. They even have a section to mentally prepare patients who are apprehensive or extremely anxious due to the uncertainty of the environment and testing process where they walk through each step and even provide photos of the environment a patient can expect to encounter. I wish I would have had that instead of every step being completely unknown to me and to have four separate changes in environments during that process and a swap of individuals from the ADOS to the other forms of testing. Absolutely no information was given prior, which only made me more anxious. Even if the diagnosis is not what I believe it will be, I am certain it will not be SPD and will at least be something with which I can relate.

I'm proud of all the self-advocacy you've done, Nic. It must be so frustrating when they're the paid professionals but you're the one doing the leg work. Definitely contact that new place asap. I've heard that some centres are still providing assessments via webcam, or at the very least you could start the paperwork process. I would seriously consider reporting the first diagnostician to their regulatory body (Psychology, Psychiatry?) with a complaint and a summary of your research. Something isn't right if they based their opinion on an overall judgement call, rather than your objective testing data.

I hope you keep seeking understanding of yourself. Try to remember the only one who really knows you is you. Simplify everything you can simplify so you find peace. You have to find the ways to shape your world so it doesn't constantly deeply hurt, frustrate or terrorize you. Much is discussed on this website about how we live in this very socializing world with ASD. I have constructed a very small world that supports the me I have come to know at the deepest level. It would be nice to have someone understand me but it is no where near as important as me understanding me. I am the best at my life and that is the only goal I need to reach.

Wow, truly a profound statement! Thank you. I believe you are correct. The world can be complicated, unkind, and sometimes cruel; however, it is how we to create in this world that matters. I have been feeling so alone because I felt like no one understood me; but the truth is that I am still in the process of understanding myself. If I don't understand myself yet, how can anyone else? I do believe it is important to know you are not alone and to find kindred in experiences and personality. I am grateful for this forum. I strive to be the best at my life. I want to be the "best I can be" but I also don't want to be "on" all the time as that is exhausting. I need to find balance and knowing that fact is a start in better understanding myself.

I was honest about my needs to my boss yesterday when asked if it has helped working from home. I explained how it feels to be in an open office with people all around me, the pressure, the awkwardness, and the anxiety. Whereas in my home office it's silent, with a window out of which I can see the trees and sky, there is only interaction if I choose to interact, and there is no judgement. I am much more relaxed and myself and am still productive. It feels like as long as I work in a public setting for a global company, I will have to at least mask occasionally. I am just savoring the time at home and trying to use this time wisely to better understand myself with or without a diagnosis.

I have found a more respectable autism and related disorders center at a local university hospital. There they specialize in autism and developmental disorders and it shows. On their website they are thorough and their paperwork is much more specific to autism and less on mental disorders and personality disorders. It turns out that some of the multiple choice bubble in tests were specific to personality disorders. I told the tester that I did not understand many of the questions and asked for clarification because it could be misinterpreted. I was told simply to use my best judgment. Well, it turns out that the way I was dressed (with the weighted shawl), only meeting the cutoff for the ADOS requirements and not exceeding it, the nervously talking endlessly without letting her speak because of nerves and my untreated ADHD, the ability to carry on a conversation, and the answers to the personality test were all misunderstood, just as I thought they might. So it was "consistent with the test" but not consistent with her findings in ADOS testing where she noticed self soothing behavior, poor eye contact, and not being able to create a story from toys or create a story in a picture book. As a result, I won't report her. I understand but disagree. I think the addition of a separate diagnostic test for something completely different that tests for symptoms similar to autism but for signs of another disorder should not be allowed.

She said questions on the personality disorder test (stating that I hear things others often don't hear, find patterns others don't find, don't like social environments, and have few friends) all pointed to SPD. I pointed out to her that these are also symptoms of autism and she argued that it's not in the same way. I told her that is why I wanted clarity in the questions before answering them. In my research into SPD I have found that hearing things others don't hear is the illusory senses in SPD (whereas for me it's sensitive hearing). The pattern finding others don't have in SPD is related to seeing outside events as personally impacting you, such as astrology or the law of attraction or seeking signs from the universe (whereas for me it's seeing when something doesn't visually fit a pattern, noticing fractals and the golden ratio in nature, seeing patterns in tiles when in a new place and thus knowing how they were laid on the foundation, things like that). The not liking social environments ISN'T because I want nothing to do with people and don't want friends, it's because crowds make me nervous and I often don't know how to engage others appropriately or continue a conversation if it is not about something I find interesting. SPD diagnostics state that those with SPD often have no friends and have only connections with first degree relatives; whereas I DO have close friends... I just don't go out a lot and I don't seek to hang out with my close friends often because it can be tiring sometimes. I have to be "in the mood" to interact.

I will inform the other place of these problems and how they can be misunderstood. I will also be taking the test again with these individuals. I am in the process of completing the paperwork. So far they are much more understanding and consistent than the other place. Even if I do not obtain a diagnosis consistent with ASD, I will at least know what I have. After this test, I will not seek another one, at least not for a while. I will try to better understand myself in other ways and try to make peace with myself. It's just too costly and too tiring of a process to continue repeating.