Had a diagnostic assessment - told I don't have it

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VelvetRose
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06 May 2016, 11:23 am

A little while a go I posted in the Getting to know each other forum:http://wrongplanet.net/forums/viewtopic.php?t=308112 about my reasons for thinking that I may be on the spectrum and a brief summary of my assessment procedure so far. Since then I have had two more appointments, the one before last a Psychiatrist came along with the Psychologist I've been seeing there, to ask me some questions (I agreed to her seeing her as the Psychologist said that she wanted the opinion of a Colleague to be certain that she was making the right decision) and I had my last appointment at the Clinic the other day to give me their verdict, which is that I don't have it. I have been pretty upset and confused by this result.

The reasons the Psychologist gave me for thinking that I don't have it were that I seem to have quite a lot of insight into myself and my problems, I'm not a rigid thinker, I'm flexible (although I'm not so sure that I trust the answers my dad gave her about the way that I dealt with transitions in my life) and she hasn't been able to find much evidence in my school reports (she told me that other people who have it had problems with taking turns with peers written in their reports) that would lead her to believe that I'm on the spectrum. She also thinks the examples that I've given her of times when I've said inappropriate things in social situations aren't like the inappropriate things that a person with Autism would say and that I'm not slow in the way that Autistic people can be, whatever that means. She thinks that the inappropriate things I've said are because of naivety. My test results for the AQ and EQ were both in the range for people who are diagnosed with ASD, though she refutes this as being evidence that I have it by saying that answering 'yes' to questions such as "Do you prefer animals to people?" is also an answer that someone who is depressed may give. She thinks that my communication problems such as not being able to read body language are caused by having a mum who had Schizophrenia. She said that I don't have a Communication Disorder. When I asked her she wasn't able to tell me what causes the rest of my Autistic symptoms. The Psychologist will send me a written report of her decision and I'm intrigued to know what she has written in it.

Whilst she may be right that at times I'm able to be flexible without any fuss, I can remember having a lot of trouble during some transitional periods in my life such as when I moved house and started sixth form, I was often late to class, couldn't concentrate and was having some problems with some of my friends. I also wonder whether she is correct about not being a rigid thinker, as when I latch onto a particular viewpoint, I'm very stubborn in that I can't usually be swayed but perhaps I'll have to ask her more about why she thinks this when I talk to her on the phone. As for my school reports, there was a few mentions in them that I had problems with staying focused on tasks for even short periods of time, there were some lies in there saying that I'd formed close relationships with my peers which I know for a fact to be wrong and there was very little about the behavioral problems I had interacting with my peers, for the first few years of Primary School I often got in trouble for hurting other kids and would get told off or sent to the Head teacher's office, I didn't realise what I was doing wrong. I was not aware of other people's feelings at that age, yet none of the Teachers thought to explain to me that they had feelings. I had learning difficulties as well that were never looked into, I did eventually grow out of them but think this may be a sign that I have something. I don't think that I agree with her about not being inappropriate in an Autistic way as I don't see other people I know saying inappropriate things like that to other people the way that I have. I also think the way that I talk very slowly is a sign that I have a communication problem. Regarding the AQ and EQ results I think these are accurate in alluding to being on the spectrum. I can't tell if my communication problems are caused by what my mum had or not though, I don't think that's why I talk slowly, in a monotonous voice and often can't get my words out properly.

There is still a lot that points to me having it that hasn't been quelled by the conclusion the Psychologist has come to. I'm pretty disappointed that I don't think she has been able to understand me as she is a lovely lady and I think very good at her job, other than the conclusion she has come to be about me, I think if I had more evidence from my past then she would've been able to see what I mean. Though it has put a lot of doubt in my mind, I still have a feeling that there is something different in my brain wiring and that my mental health problems are caused by feeling profoundly different to others and having more difficulty with doing things than most do. To add to my disillusion, I went to my GP the other day and mentioned my result to him and he said something like "we've gotten this out of the way now", nothing about perhaps getting a second opinion just to check and he said he will wait until he's received the report to decide where to refer me next. On my first post on here people here responded say I should seek a second opinion, I was wondering what people think now after reading this. I was also curious to know whether any of you had been through an Assessment procedure and told that you don't have it, only to be diagnosed by someone else later. Perhaps I do just need to accept what the Psychologist has said but it doesn't explain a lot of what I've experienced in life. I don't think that I'd be struggling this much in life if I had a typical brain.

Sorry for the long post, just need to hear from others who have had similar experiences but any thoughts or advice about this are welcome.



Jermaine
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06 May 2016, 12:59 pm

You shouldn't be disappointed in her verdict. :)

The spectrum is a very wide and mysterious place, with much (still) not yet completely understood. For all we know, you're something new research just hasn't caught up to yet, and by the time they do, we may not even be calling it "the spectrum" anymore.

We're all different here, you're just different in a different way; other than what classifies as text-box ASD to this psychologist or psychiatrist. I find that the most "lovely" psychologist have the least qualifying amount of understanding to conduct a proper assessment of who we/you are as a human (also considering that most are NTs). They tend to have only a good bedside manner and an honest face or voice (that tends to sell). You being a female doesn't help much either.

Based on your linked post, It looks like you've made a through list and evaluation of yourself with written reason on why you're confident in your association with ASD, some posted, some probably not.

If you ask me, you're on the spectrum for sure. You may not be HF, but you're on it... only you know where.


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06 May 2016, 1:09 pm

it may be that you came across fairly normal, so the psych was not able to find enough evidence in support of autism

did you focus on concrete impairments?

i think it helps to focus more on those, less on introspection, everyone has their own introspection about themselves, often including a big part about how different they feel from others,and it is likely that yours are similar to many people's including lots of nt introverts

so it has to be externally observable behaviors and impairments that provide the evidence


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06 May 2016, 1:15 pm

I would either go for a second opinion or continue discussing this to understand why they say you don't have it and to understand yourself better about your "symptoms" you've displayed. And if every doctor says you don't have it, you probably don't. If they say you have symptoms, I think that would be good enough as a diagnoses even though it wouldn't be a real one. Just enough to know you do have symptoms but not enough for the diagnoses but it would still help you understand yourself better.

Also for the diagnoses to be made, it has to be impacting your life, if your symptoms don't really impact your life, then it's not autism by medical definition. If you feel you do have an impairment and you are struggling to live your life, then do go get help for that and it might not be autism. It could be ADD, anxiety, and so on. People argue about if autism can be outgrown or not. People say if you grew out of your symptoms, you never had it to begin with and then I hear about some people outgrowing their diagnoses and even some experts believe some grow out of autism so mmmm. I have heard of people outgrowing dyslexia so would that mean they never had it to begin with? I am sure in some cases it's true that if one outgrew their autism symptoms, they never had it to begin with. Look at Benjamin Nugent for example. But then you hear about Raun Kaufman and you really wonder. But some people have even questioned if he was ever severely autistic to begin with.


In 4th grade my mom had me tested for Asperger's and my clinical psychologist said I didn't have it and diagnosed me with ADD. Mom stopped taking me to her after about a year because she wasn't the right therapist and I remember we only did tests together and we didn't go to her that often and treatment I was getting for ADD wasn't working so my mom knew I had more going on. I have questioned rather I had ADD or not but my mom says I do have it but it wasn't the right diagnoses. I feel I have grown out of it a lot so it doesn't impact my life anymore so would that mean I never had it to begin with? I know a misdiagnoses can happen with ADD also and sometimes those so called symptoms were something else such as anxiety or autism or dyslexia, sensory processing issues. I notice a bunch of overlaps between autism and ADD so I can see why every doctor I had as a child would bring up ADD as my possible diagnoses and why my therapist I saw in 5th and 6th grade thought I had ADHD. I know I was very distracted a lot as a child and it was very bad and I still can't listen to lectures. I still have a short attention span. But my ADD isn't bad anymore like it was when I was a child and also I am not in school so that probably makes a big difference. But I have seen someone online argue that it can't come and go. Well my anxiety comes and goes and my OCD, does that mean I don't have those? In my autism groups people there don't often act like they have it so would they mean they are not autistic just because they are not showing all their symptoms and because they are talking and having conversations and looking at each other like I see NTs do?

But geez I must be a fraud then because I get SSDI and work for a company that employees people with disabilities :roll: After all a disability or a mental illness isn't supposed to come and go so I must be doing something wrong and I have to toughen up. (sarcasm). But hey give a person with dyslexia an easier book to read and their dyslexia is gone so they must not have dyslexia if it comes and goes right?


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cavernio
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06 May 2016, 1:26 pm

I know someone who recently got a 'not ASD' diagnosis recently also, and I'm very suspicious of it. The psychiatrist was like 'well, your parents didn't help you to socialize properly, so you never did'. Umm, really??? They didn't ignore him. He had a brother and a sister and went to school with all the other kids with whom he didn't get along with. Sure he has social anxiety, and sure that his parents didn't help him with that is a problem, but that still doesn't explain that he had to unnaturally create a complex system of social interaction to merely get along with everyone else in the world. Like, it doesn't explain WHY he had issues in the first place, or why he had to learn when it's a natural thing to everyone else. He has sensory issues and I've seen him have shutdowns and he has borderline OCD behaviours. Furthermore his good friend is diagnosed with it and they get along smashingly because they're so similar in so many ways.

You being female I'm sure didn't help for getting a diagnosis. You're depressed and that's often all doctors seem to see once you're diagnosed with that. It's quite frustrating that, I've gone through that.

Not having a diagnosis of it even if you do have it will be bad if you cannot get proper support for issues you have in your life. If you don't need support or you can get it anyways, then there's no need to worry. It seems right now you're most concerned about accuracy of what you have. Sadly psychology is far from accurate, and autism uses psychological tools for diagnosis.


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Dulin
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06 May 2016, 2:42 pm

I recently talked to my psychologist, who I am seeing because of a burnout, about the possibility of having ASD. We talked the whole session about why I consider it a possibility. She explained to be that diagnosis is always based on symptoms and how it was growing up, and after the diagnosis, nothing changes - you are still the same person. And honestly, I find that I am typical case of high-functioning Aspergers, but because I am crap at explaining myself (or others just don't understand me), I always get misunderstood, and I never say everything that I want to say.

She didn't say if she agreed that I was in the autistic spectrum, but mentioned that a lot of the things I say can also be GAD (which I am diagnosed of), OCD and ADD (both self-diagnosed). She even asked about "special interests" - she used these words,- and my special interest is so interdisciplinary and complex, that I don't even know if it considered "special" enough, it doesn't even have a concrete name, so as I try to explain to her about it, I find myself sounding like I desperately want to tick this "special interest" box. I am immensely interested on the interdisciplinary evolution of humans and human community structures: physiology, psychology, cultural, political, behavioural, genetics - from the first human migration, to ancient civilisations, to LGBTQ identities. Fascinating stuff!

The point is, I think that a lot of psychologists do not take into account the personalities of people in the autistic spectrum, and instead go straight into the symptoms. Autism is not like having an infection: you find a high number of WBC, thus you have an infection. Autism "manifests" differently in different people, and everyone has different experiences and learning curves. Just like people with OCD might have mastered their obsessive and compulsive tendencies, many people with autism have found a way to go around their difficulties. But still, what goes on in an autistic mind in terms of thoughts and perception is maybe quite similar to many of us - from what I gathered from this forum.

Talking to her made me realise that getting a diagnosis was hard, because these stupid symptom-based diagnosis are so easy to manipulate, that I get all stressed up, don't want to lie or exaggerate, and then I start doubting myself. But honestly, I having compared notes with many neurotypical people, and come to realise that I am not neurotypical, so neurologically there is something there that isn't really there. It's like you realise you are colour blind and other people don't see the world as you do. Mind blown.

If getting a diagnosis is important for you, go for a second opinion. Many times doctors are wrong. I got a burnout or post-concussion syndromes (which doctors don't agree, because I didn't faint after a blow in the head) 2.5 years ago that lead me to have extreme memory and cognitive impairments as well as a 6 month long headache. My first diagnosis: iron deficiency. Second diagnosis: depression. Third diagnosis: burnout. I had many doctor's appointments, with different doctors, complaining of the SAME THINGS, and FINALLY someone said "Ok, I am tired of you, go to a specialist", and a team of specialists concluded with a thorough examination that I had a burnout. I had this incident november 2013, and only february 2016 did I start a rehabilitation program. This story to say that you know yourself better than doctors.



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07 May 2016, 5:35 pm

For me what stands out is this baloney notion that those on the autism spectrum, particularly Asperger's cannot have insight into their condition. Another equally BS assumption that I've heard before is that one cannot possibly have Asperger's and still be able to articulate themselves clearly.

Red flags like that tend to make me question the competence of the so called doctor/psychologist/psychiatrist who makes ignorant statements such as these. It says "I have no idea what the hell I am talking about".



spinelli
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07 May 2016, 7:44 pm

Be glad you don't have it. I can tell you that it's not fun. No need to be disappointed. It's not like you didn't get accepted at Harvard.



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07 May 2016, 10:10 pm

^ I think the point of the OP's disappointment is not that she didn't get to join the "trendy aspie club", but that she is having difficulties in daily life which she wants an explanation for. Because the explanation isn't autism (or at least it isn't to this particular doctor), it means she still doesn't know what's causing the problems, and that's where the difficulty lies.


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08 May 2016, 9:31 am

i have experience with this. I was diagnosed with F84.8 (an autism spectrum condition) but no one understood the diagnosis and said "it was just generally used" when it in fact, was not. I was told i was autistic at the age of 13, then i changed who i spoke to and suddenly i "wasnt autistic anymore" and that "i had never been autistic in the first place". This confused me greatly since i read the report myself. I was told "not aspergers/autistic" until a few months ago when my doctor said that the diagnosis i received at the age of 13 actually meant autism/aspergers syndrome. During those years of being labeled "not autistic" i did identify as autistic, because i "knew" i was autistic.
I was right in the end but it was exhausting being told "no, your diagnosis doesn't mean that", "you cant have autism because you care about your pet", "no, you can't be autistic because..." for years from "professionals".


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spinelli
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08 May 2016, 9:52 am

She can continue to seek help and find out . But often times we can convince ourselves we have a certain malady. Yes, in my opinion many people seem to be rushing to get a DX of Asperger's.



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08 May 2016, 10:04 am

This is not an accusation, but I have the impression that the OP is upset because she didn't get the diagnosis that she wanted.


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08 May 2016, 10:25 am

So much of this process is opinion - even professional opinion will vary and I suspect that some docs are more likely to render a diagnosis one way or another. It doesn't seem right to rely on this to describe our lives and formulate how we feel about the world. Maybe in the future we will be able to make a physical diagnosis, like specific structures found in an MRI. But the spectrum is probably not that unified, there are probably a dozen kinds of autism.

OP, it just depends on why you wanted the piece of paper - to actually get services, or for an explanation of why you are you... You have plenty of insight already so I'd keep with that instead of what those other guys say. Labels are for clothes.


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08 May 2016, 11:07 am

Surprisingly enough, doctors still have trouble diagnosing neuromuscular diseases like MS and ALS, even with genetic testing, MRIs, and nerve conduction studies.



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08 May 2016, 2:13 pm

Regardless of your diagnosis, you are welcome here. But more importantly, you need to talk to your psychologist to figure out a treatment agenda that will help.

I can understand your fear and frustration. I have not tried to get a diagnosis. They would probably list a bunch of symptoms, anxiety, avoidance, depressions, etc ..., and not help me find the underlying problem. Get handed a bunch of pill that turn my brain to mush and told to return in a few weeks.

On Facebook, I have been accused of being an NT by self appointed experts. This was a way to dismiss my opinions as an ignorant rubbish. Facebook is known for this and it happens all the time. Let me get back on track after a brief nudge. When things are going well, I can pass quite easily. But, when stressed, my behavior changes and I burnout. That is not easy to measure. I had a very promising career as a programmer in the hedge fund industry. The work was easy, the projects were interesting and the office politics was a nightmare. My body rebelled and I had to leave. That is life.

You may be lucky. With good advice, you may find a way to succeed in this world


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09 May 2016, 12:07 am

I had a heart problem that I've had my entire life diagnosed at age 30. And the only reason that that happened was by doing my own research and then arguing a cardiologist into doing a test (that he didn't want to do). It took over 10 doctors getting it wrong before basically doing it myself. Not getting the diagnosis you 'want' is going to look the same from the outside as knowing that the one they did or didn't give you is probably wrong.

Trouble with uncertainty is an ASD trait, which I think leads to the usual comments. When I was younger I found uncertainty unpleasant almost to the point of wanting to believe a falsehood with certainty rather than hold an uncertain truth in mind. And then I realized that the only areas in life that you have absolute truth are religion and math. And, even in "standard" math there are assumptions that are probably true but which have not been rigorously proven (and might not even be provable). So, outside of religion all of your knowledge will be contaminated with uncertainty.