Assessment Results Are In! Spoiler: It's (apparently) Not Autism

[zozie]

So I just got my assessment results. The doc said I have Obsessive Compulsive Personality Disorder, noticeable sensory processing difficulties, and that my need for control in situations via information gathering and "needing to know" what social situations mean is rooted in a trauma that happened in my past. She also said that some people just have "quirks" and that she couldn't account for those in my early childhood, but it's definitely not autism.

I used metaphor, for example, and figures of speech, which autistic people apparently cannot do, and that I should really look into Acceptance and Commitment Therapy to make peace with my apparent control demons. She also cited a deep loneliness, which I find puzzling (though I know many autists are), and that I present in many autistic ways, but that I'm just not autistic.

I will say that I do indeed have a trauma, more than one, and that I do indeed gather information in order to understand. The control thing seems not quite right. My mother reports that her interview on my early childhood felt tense because she felt guided in a certain direction, and I felt that way as well.

"But there's a silver lining to all of this, autism is forever and your life can improve with the right treatment." Which treatment is that, I wonder? The treatment that encourages me to twist myself into knots trying to admit that I apparently need to control social situations throug hinformation gathering?

In the end, I will say that if what works for me happens to be the same stuff that works for autistic people, then I don't know what to say, given my sensory issues and weird childhood, but ultimately I don't care what this doctor says.

I will, however, reject therapies that don't work for me, such as ones that reach deeper into my intellect to make sense of my emotions. That has ...not worked in the past.

I will indeed follow up on her referral for sensory processing difficulties.

So. That is my assessment journey. As far as diagnosis, well, let me say that it's at the most incomplete, and I learned a huge amount about myself along the way, and that things would have probably gone a lot differently were it not 2020 and I were not fried already by other things.

Thank you all for listening and being so supportive these past few weeks. I hope you don't mind if I stick around.

 

[Kit]

I am not sure what to say here, do I congratulate you for not having it?

I can't really see any difference between OCPD and autism other than that OCPD seems to be another name for an autism symptom for those who do not have enough for a autism diagnoses. That is how I view SPD and dyspraxia and OCD and so on.

 

[zozie]

I am very happy about what I have learned about myself along the way. And especially happy to have the uncertainty factor over with. Yeah, I don't really agree, but at least I don't have to wonder anymore.

As my 16-year-old is going to be assessed by a different doctor in March, I'm very interested to see how the approach differs from assessor to assessor, if it does at all. I'm not anxious for a second opinion immediately, but will probably pursue one at some point. I also wonder a lot about what 2020 has done to everyone's mental health.

I do definitely think "congratulations for even getting through it" is a great thing to say.

 

[Thinx]

I guess the state of autism diagnosis, for women in particular, has to leave a question mark here, as for many others. But I recall you saying it had been hard to succeed at work, I think? And if you meant, you can't stay in work, maybe getting some therapy around the areas that are problematic will be helpful?

Although autism doesn't change, it doesn't necessarily stop people being in work, or having satisfying careers, so even if you are autistic, it might be something like, effects of trauma, that would be potentially helped by therapy, that is causing overload to your work endeavours? So many variables, it's hard to say, but I ve got a lot from therapy over the years.

Thing with therapy is, if it feels wrong for you at any point, assuming you gave it a try, then it probably is wrong, so a therapist who perseveres with an endeavour you've found not useful is not a therapist to persevere with...

Sounds like you are keeping an open mind about it all, I expect it will take a while to process.

 

[zozie]

I guess the state of autism diagnosis, for women in particular, has to leave a question mark here, as for many others. But I recall you saying it had been hard to succeed at work, I think? And if you meant, you can't stay in work, maybe getting some therapy around the areas that are problematic will be helpful?

Although autism doesn't change, it doesn't necessarily stop people being in work, or having satisfying careers, so even if you are autistic, it might be something like, effects of trauma, that would be potentially helped by therapy, that is causing overload to your work endeavours? So many variables, it's hard to say, but I ve got a lot from therapy over the years.

Thing with therapy is, if it feels wrong for you at any point, assuming you gave it a try, then it probably is wrong, so a therapist who perseveres with an endeavour you've found not useful is not a therapist to persevere with...

Sounds like you are keeping an open mind about it all, I expect it will take a while to process.

My biggest struggle with work in the past has been ambiguous expectations via vague instruction, and stand-up meetings with a lot of unstructured chit-chat. Not knowing what is expected of me is very stressful. Trying to find out is also very stressful. Not being able to read expressions enough to understand how my boss feels about my performance is very stressful.

This has, as you mentioned, led to me overworking because I don't know how much is enough. Not because I feel I need to work harder, but because I don't have clear direction. "Do your best" is really hard for me to gauge in a professional situation.

Also, trying to correct my affect is hard. I tend to overdo it, but generally learn about how "dramatic" I am after the fact. Just a little bit too much, like penetrating eye contact, not something more sporadic. Now I don't make it at all and my nervous system is very happy about that. At the same time, now I just look sullen.

The second biggest struggle with work is sensory. Multiple people talking is hard, as well as certain pitches or ambient noise. I feel fried and it's quite difficult to concentrate.

The beginning of this assessment journey did indeed begin with Voc Rehab, which I am going through for the second time, and so yes, the emphasis is on being able to have a job that is fulfilling and satisfying. My Voc Rehab counselor is very pragmatic and is more concerned about what my needs are -- not as much what they're called or diagnosed as. So that's really helpful.

 

[OkRad]

Even ten years from now, psychology will be seen as so archaic. There is no way she can make a scientific claim that you do not have autism unless she uses science to find it. I like the approaches which use genetics as well as intense neurological studies to include brain scans and non-psych neuro/cog testing. Otherwise a tester's personal bias may interfere, especially if the subject is female. No matter if you have it or not, you will always be welcome here.

 

[Tom]

I used metaphor, for example, and figures of speech, which autistic people apparently cannot do.

I really do believe that is completely false. I use both all the time, and in fact at times was known as being very good at metaphors. Once I read something like that I can't take the rest seriously.

 

[zozie]

You know, this whole thing has got me thinking about the process of masking, and the toll it takes. How easily it creeps up on someone throughout a lifetime, and what to do when you realize how much it's damaged your mental health.

I've concluded that feeling shut down and exhausted and frustrated and wanting to be understood is what happens when I DO mask. In that sense, these findings do fit, at least in symptom. But at the same time, it's possible that I'll never fit the bill exactly, so what's left? It's possible that, as stated in earlier comments, psychology will become archaic in 10 years anyway, and that trying to obtain an official diagnosis is not within the scope of our tools. At least, not for some of us.

I'm an exhausted mess of a person when I try to understand the environment around me, but do I really have to understand? I will never get how NT people work. Is that a problem? Do I have to keep putting so much energy into trying to make myself understood by a system of evaluating that insists that I can't know how things are for myself, or what my inner experience is?

I've decided to just accept that I'll never understand most social situations, and that trying so hard is bad for me, and that I need to start paying attention to what lighting and sounds and visual clutter do to my mental health. And maybe most people will misunderstand me as well. But the effort of masking has clearly taken its toll.

Some simple comments may be all it takes for a happier future.

"I'm not great in social situations, please be patient while I gather my thoughts."
"Could you please explain what you mean (or be more specific)?"
"I'm sorry, I'm not able to focus with three people talking, care to take the conversation to a quieter spot?"
"I do take a special interest in this topic, please let me know if I'm getting carried away."

Maybe that's all that is really needed.

 

[Suzanne]

I was told by a general doctor, who said she knows what aspergers is, laughed at me, whilst looking at me and said that there is no way I have autism. She had many patients who were autistic and there was no comparison, but I said on the spectrum, not classic autism. Huh, she is retired now.

I also had my therapist say that they felt sure I was not on the spectrum, but did refer me to the appropriate people and after talking about my childhood and doing a few tests, she said that I scored typically for someone on the spectrum and then, referred to an expert, who again, asked about my childhood and after two visits, diagnosed me with be moderate, verging on severe.

I am not a classic case. I do not have a montoned voice, nor a bland face ie without expressions, however, people treat me in a way, that is rather different to when they speak with others; almost as though I was a child, which rather annoys me.

I guess one should congratulate you for not being on the spectrum, but really, is it a congratulations? Do you sense the assessment is not accurate?

 

[Finder]

Autism is tricky. It is basically diagnosed on behavior. It is also a triad of symptoms. I doubt there will ever be a genetic test for it simply because it is an emergent property of a complex biology.

But yet it describes a lived reality for people. I was having problems interacting with people and the best answer I had was I was an introvert. But that really did not compute as I also like teaching and being with people. I then stumbled on the connection of introversion with autism. I looked up autism and I saw myself in that. It simply described so much about me and my past. Since getting my diagnosis, I have been doing more and more reading--naturally, I take to special interests very easily . Things just clicked. It has not ended my challenges, but it did give me a framework with which to approach them.

I would probably start thinking about your assessment. There might be something in there that might be more valuable than an ASD diagnosis. (ASD does share so many traits with other conditions.) I found reading about ASD so helpful for me, I am sure the information from your assessment will help you.

Naturally, you are always welcome to the island of misfit toys (and I mean that in the kindest of ways).

 

[Sarah S]

I would say congratulations . Youre not in the spectrum. Be happy my friend . Being in this spectrum is not a blessing its a life long Diagnose that will mess with youre life from the day youre born until you leave .

And now you know utliest what you have and dont have so you can better understand youre self and learn how to cope & adapt to youre given diagnosis. and of course you can stay as long as you want to (smiling )

 

[SusanLR]

I wouldn't trust the assessment.
Based just on figures of speech and using metaphors.
And there are psychologists that are biased in diagnosis because we don't look or have
certain actions.

I asked my therapist this week what was she using to base that I am HFA level 1?
She replied intellect and good speaking ability.
Yet in all the executive functioning tests, abilities and questions, I am quite low.
The answer seemed a little skewed to me.

I'm listed as HFA because of speaking ability and IQ?
Not that I want any certain level for a reason, but, if I'm registered as on the spectrum
with Level 1 autism, I just want the diagnosis accurate.
Now that the word Asperger's has been removed from the testing, I'm not sure about the
accuracy levels.

I agree with you ideals though, whether the assessment was or was not accurate.

Some simple comments may be all it takes for a happier future.

"I'm not great in social situations, please be patient while I gather my thoughts."
"Could you please explain what you mean (or be more specific)?"
"I'm sorry, I'm not able to focus with three people talking, care to take the conversation to a quieter spot?"
"I do take a special interest in this topic, please let me know if I'm getting carried away."

Those are things that are spot on in the situation.

 

[Progster]

I used metaphor, for example, and figures of speech, which autistic people apparently cannot do,

This is rubbish. Take a look around this forum, there are plenty of threads devoted to humour such as puns or jokes. If this were true, then such threads wouldn't exist. There is a published Japanese poet diagnosed with autism, and some who have a degree in English literature. It makes me think that the clinician is not experienced with those on the spectrum and therefore doesn't know how autism can present itself in practice, basing her conclusions on textbooks and case studies. Too much emphasis on textbook 'symptoms' and no real understanding of what autism really is. But she is not autistic, so how could she know? I wonder if she ever visits sites like this one to see what autistic people think and feel, how they perceive the world through their eyes? Most adults learn some masking or coping skills, so the approach should not be to just look at actual behaviour, but also to ask what the person feels in any given situation. There one may find experiences common to all, or most people on the spectrum.

 

[hatfullofrain]

used metaphor, for example, and figures of speech, which autistic people apparently cannot do

That's a strange thing to say. Autism is a spectrum. Not all autistic people fail to understand metaphor.

I'm looking for someone qualified to assess me and this is one of the reviews of a therapist I'm looking into


"[She] never used any cliches of people with autism whilst performing the assessment. When I later told a psychiatrist that I had the diagnosis, he asked "what does it mean when I say 'the apple doesn't fall far from the tree'?" and seemed surprised when I didn't answer literally. [The assesor] knew that autistic people are capable of learning such idioms, and so never used them in her assessment. I've also met doctors who assume all autistic people are computer geeks; [the assesor] knows we come from all walks of life."

I've removed names.


On another note,
I do wonder how many of my issues stem from trauma. I am hyper vigilant, like,e a spy, I know where the exits are and how to read people for warning signs.

 

[zozie]

Excellent viewpoints and insights, as usual. It is indeed useful to look at the findings and consider what they may be, rather than what they are not. I will do this for as long as I find myself reflected in the results, but no longer. One might ask why, and my reason is that my strategies in the past have tended towards self-discovery as a way to move normally in the world. As such, the chances are that if it doesn't feel like it fits, then it doesn't fit.

I do wonder what being massively triggered by a trauma memory could have done to the overall findings. I know it influenced me. I have a past of being misdiagnosed by doctors and having to do all of my own research to get the care that works (I did that several years ago for trauma with very good results). There is no question -- after some processing with my therapist -- that this played a huge role in my stress level while being assessed.

But at the same time, does being relaxed produce different results? Possibly, but hard to say. Inconclusive. There are good things that have come out of it, such as a referral for a sensory processing evaluation. And more internal things, like the opportunity to resolve a trauma I hadn't realized was present.

As far as what I will do now, and how I identify... it's funny. Years ago I came across a theory that human souls reincarnate in human bodies, and some alien souls incarnate into human bodies, and it struck me at that time that this was the source of my confusion and distress. Like, duh, it all makes sense now, I'm an alien. I found so much comfort in that theory because it took the attachment to being understood out of my mind, and all of the judgments I placed on myself for not "explaining it well enough" and "being really weird and sensitive" really just dissolved.

I find comfort in that theory now. It's apart from any diagnostic language, which will give the issue of diagnosis time to settle. That's important, too.

In the meantime, Hello, my name is Zozie and I'm an alien. It's lovely to meet so many people who are so different and yet so alike. Earth is one seriously weird place, isn't it?

 

[OkRad]

I am sad you endured that. I rode that wave----early dx, second dx to confirm, later dr laughed in my face and gave me a non-dx, followed by a ripping good Dr who put an end to the nonsense, tested the heck out of me (genetics and brain scans to boot!) and said indeed. So here I am back in the fold!

The reason it matters is because of what you said about masking. I have permission now even subconsciously not to mask. Since that day i really can't mask now. Even if I try, I can't.

There are so many people who are out-right science deniers now, that anything requiring the least bit of mental negotiation in the grey can make people aggressively take a stand in their own emotional biases.

That dr had no right to make such baseless claims and the more I read her basis for saying you are NOT autistic, the more it seems she already had her mind made up. Was this an autism specialist? What kind of dr? PhD? CCSW? MA?

If you think you are autistic, there is no reason why you should not identify as that. Back in the day, parents KNEW their kids were, only to have drs tell them to smack the kid or something.

Don't trust idiots and don't trust science-deniers. They are not only annoying but very dangerous.

 

[Sarah S]

In the meantime, Hello, my name is Zozie and I'm an alien. It's lovely to meet so many people who are so different and yet so alike. Earth is one seriously weird place, isn't it?

Zozie as an alien my self from birth (ie i never fitted in anywhere ) let me just say be PROUD of who you are dear if others have problem with you then thats their problems . You belong in here and you are ONE of us so dont for a second belive otherwise (HUGS )

 

[Starfire]

So I just got my assessment results. The doc said I have Obsessive Compulsive Personality Disorder, noticeable sensory processing difficulties, and that my need for control in situations via information gathering and "needing to know" what social situations mean is rooted in a trauma that happened in my past. She also said that some people just have "quirks" and that she couldn't account for those in my early childhood, but it's definitely not autism.

I used metaphor, for example, and figures of speech, which autistic people apparently cannot do, and that I should really look into Acceptance and Commitment Therapy to make peace with my apparent control demons. She also cited a deep loneliness, which I find puzzling (though I know many autists are), and that I present in many autistic ways, but that I'm just not autistic.

I will say that I do indeed have a trauma, more than one, and that I do indeed gather information in order to understand. The control thing seems not quite right. My mother reports that her interview on my early childhood felt tense because she felt guided in a certain direction, and I felt that way as well.

"But there's a silver lining to all of this, autism is forever and your life can improve with the right treatment." Which treatment is that, I wonder? The treatment that encourages me to twist myself into knots trying to admit that I apparently need to control social situations throug hinformation gathering?

In the end, I will say that if what works for me happens to be the same stuff that works for autistic people, then I don't know what to say, given my sensory issues and weird childhood, but ultimately I don't care what this doctor says.

I will, however, reject therapies that don't work for me, such as ones that reach deeper into my intellect to make sense of my emotions. That has ...not worked in the past.

I will indeed follow up on her referral for sensory processing difficulties.

So. That is my assessment journey. As far as diagnosis, well, let me say that it's at the most incomplete, and I learned a huge amount about myself along the way, and that things would have probably gone a lot differently were it not 2020 and I were not fried already by other things.

Thank you all for listening and being so supportive these past few weeks. I hope you don't mind if I stick around.

Wonderful news I’m happy for you, you’ve dodged a bullet there! I wish I’d had the same result, or at least been assessed not to have ASD, but sadly and unfortunately that wasn’t the case. Good luck in whatever treatment/therapy you are offered I hope it helps you with whatever trauma you’ve been through.

As for remaining here without having a diagnosis, I don’t see any reason why you shouldn’t be welcomed to continue as you have been. At least you’ve been through the diagnostic process now, and you’re certainly far from being the only person involved in the forum not have ASD.

 

[SDRSpark]

I am very happy about what I have learned about myself along the way. And especially happy to have the uncertainty factor over with. Yeah, I don't really agree, but at least I don't have to wonder anymore.

As my 16-year-old is going to be assessed by a different doctor in March, I'm very interested to see how the approach differs from assessor to assessor, if it does at all. I'm not anxious for a second opinion immediately, but will probably pursue one at some point. I also wonder a lot about what 2020 has done to everyone's mental health.

I do definitely think "congratulations for even getting through it" is a great thing to say.

Very good things!!!!

It sounds to me like the doctor was saying "well you have all the pieces for autism, but I can't prove that they were present in childhood, so I have to explain them some other way and give you a diagnosis that sort of fits". I'm disappointed, but not surprised. That's how it often goes with adults seeking autism diagnosis. They will admit that all the parts are there, but if they can't prove that they're lifelong, they "can't" diagnose autism.

I got an OCD diagnosis officially, and I too feel like I need to "twist" my experiences in order to "fit" the diagnosis (if I WANT too, which I don't. Screw it. Why would I want to make myself fit a diagnosis?)

It really sounds like the "control issues" bit of your diagnosis could do a lot of harm, tread carefully (which it sounds like you already are).

 

[SDRSpark]

I do wonder what being massively triggered by a trauma memory could have done to the overall findings. I know it influenced me. I have a past of being misdiagnosed by doctors and having to do all of my own research to get the care that works (I did that several years ago for trauma with very good results). There is no question -- after some processing with my therapist -- that this played a huge role in my stress level while being assessed.

A common idea in online autism communities is that there is no such thing as an untraumatized autistic person. They simply don't exist, as the result of navigating life as an autistic person in a world that doesn't accept us causes trauma.

Therefore trauma cannot be mutually exclusive with autism.

It's actually really difficult, if not impossible, to separate what's trauma and what's autism in many autistic adults. The two go hand in hand.

As far as what I will do now, and how I identify... it's funny. Years ago I came across a theory that human souls reincarnate in human bodies, and some alien souls incarnate into human bodies, and it struck me at that time that this was the source of my confusion and distress. Like, duh, it all makes sense now, I'm an alien. I found so much comfort in that theory because it took the attachment to being understood out of my mind, and all of the judgments I placed on myself for not "explaining it well enough" and "being really weird and sensitive" really just dissolved.

I came across such ideas when I was younger and looking for answers. Unfortunately I allowed myself to be convinced that I really WAS something other than human, at least for a time. It's great as a metaphor to understand the world, not so much when you take it as fact. (This is a big reason why I wish I had been diagnosed as a child - I never stopped looking for answers, but being prevented from accessing the scientifically sound correct answer, I found some other answers instead.)