PLEASE ANSWER!: Official diagnosis from ASD specialist

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I was diagnosed with 'Aspergers Syndrome' in addition to 'Generalised Anxiety Disorder' by my psychiatrist in mid 2013. I had been seeing him frequently for hourly sessions for over a year before he diagnosed me. I had actually brought up the subject, which he then researched and came to the conclusion that I did have Aspergers Syndrome, although 'mild'.

There are a few qualms I have about this:
- He is not specialised in ASD, hence in diagnosing people with ASD
- He.does not have much experience in working with patients with ASD
- I did not undergo a thorough ASD assessment leading to a diagnosis
- I am an adult and am female
- My case is considered 'mild' by his standards
- He diagnosed me with 'Aspergers Syndrome' instead of the correct diagnosis of 'Autism Spectrum Disorder' according to the DSM-V that was in place in mid 2013
- The diagnosis is based on anecdotal evidence from early childhood through adulthood, and I don't trust simply anecdotal evidence as being reliable (especially when most of the information is provided by me)
- The diagnosis is in no way backed up by scientific evidence (I have a Science background and need scientific evidence, whether it be brain scans, lots of data based on observations and information gathered from everyone that knew/knows me, etc)

I just don't think a diagnosis like that is very reliable.

I do believe a diagnosis would help me in my life.

I could give you a history of my life but still that is only anecdotal.

Do you believe it is worth seeking an official diagnosis of 'Autism Spectrum Disorder' (according to DSM-V) from ASD trained assessors?

My Psychiatrist believes that ASD professionals would come to the same conclusion after I brought up the topic with him recently. But how would he know? He then said that he is still a 'Specialist' and does have the power to diagnose me, and did his research. He is an excellent psychiatrist with very good credentials but he is no ASD expert.

I am struggling financially, therefore seeking a costly diagnosis should be taken with much consideration.

Any thoughts?

Please help me.

Aspergers Syndrome isn't even a proper diagnosis anymore...

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Please note that I do not feel comfortable with replies along the line such as whether or not it will make me feel more reassured of my diagnosis.

I just want to know whether it should be considered official or not.

And I only want to hear from people that have an official diagnosis of Autism or Aspergers Syndrome, not anybody who is undiagnosed.

Last edited by PhoenixRising on 09 Nov 2014, 3:56 am, edited 3 times in total.

Please reply ASAP.

Short replies are acceptable.

I just wanted to say that I, too, was diagnosed with Asperger's Syndrome and not Autism Spectrum Disorder. I don't know where you live but over here Asperger's Syndrome is still a valid diagnosis according to ICD-10. It will "automatically" change to Autism Spectrum Disorder sometime in the future though (not sure when). Like I said, I don't know where you live so I can't be sure what it's like there but that's the way it works over here anyway.

You wrote that you're not really interested in answers that have to do with the fact that you might feel more reassured if assessed by an ASD specialist so I'm afraid I don't know what else to tell you. I don't know how things work where you live so I can't tell if your diagnosis is official or not. I just know that I, personally, wouldn't be content with a diagnosis that wasn't based on loads of information gathered in different ways (tests, interviews with my parents and other people, observations etc.).

Good luck.

Thank you rebbieh. I really appreciate your response and agree with your last statement.

I desperately want others to answer!
It bothers me and I have a lot to deal with right now.

Are you in the United States? If you are, contact your local Office of Vocational Rehabilitation and see if you qualify for a diagnosis with them. If you do, they will help you but you have to qualify.

I looked into this myself and apparently the only way to diagnosis ASD is through observation and anecdote. Sounds like your doctor is informed enough to be able to do that. You've spent a heck of a lot more time with yours than I did the doctor who diagnosed me.

I'm not sure what more any specialist can offer you (although I'm sure they'd be happy enough to take your money.)

Regarding his specialization and experience, you really want to ask if you think he is competent and makes aound judgments. Every specialist starts somewhere.

A thorough ASD assessment usually means a lot id psychometric tests which are not diagnostic of ASD and some questionnaires that go over detail that you may have already discussed with him in more than a year of sessions. He probably did quite a bit of reading, informed by his psychiatric training, before making the diagnosis.

I am not sure why your gender and age would be relevant. I gave seen some discussion of these as factors that can make the diagnosis more difficult, but not supported by data or with specific gender adjusted criteria.

An Aspergers Disorder diagnisus was perfectly acceptable in the US during a transition period in which most if the available training is based in the old standard. An Asperger?s diagnosis was considered an ASD diagnosis for some years before DSM 5 was published.

Whatever your personal feelings about this, it is often the case that for the early childhood of adults, anecdote is all you can get.

As there is no blood test or brain scan that can show ASD, and the diagnostic criteria are based on the observer?s judgments rather than quantitative analysis, you are not going to get this.
When people get reams of reports and data from their diagnosis, this generally consists of IQ tests (which are not diagnostic) and tabulations of data from instruments that are questionnaires designed to extract information that may have come out in your many sessions with your doc.

Do you think your psychiatrist is diligent and competent? If so, I wouldn't worry about the details you list. If you think you were misdiagnosed and don?t trust the doc, get a second opinion.

[windows 8 autocorrect is risibly worse than iOS]

Even with every questionnaire, an ADOS, and a bunch of other tests one professionals diagnosis can last....up until someone questions it for any reason, then you could be reevaluated and diagnosed with something else. That's unlikely as it's expensive, there would have to be a reason to repeat, but it can and does (though infrequently) happen.

You have been officially diagnosed to most people but there are always people who will say otherwise. If you disagree with that official diagnosis it seems to me you probably aren't or shouldn't be trusting the care of the person who made it whose treatment of you should now be taking into account all the factors impacting your difficulties, which include the ASD.

Just bear in mind when you read my response that I'm not sure if I'm adequately official for who you want to hear from as I was originally diagnosed prior to the widespread use of the ADOS and before ASD was recognized as existing much in girls and women. I don't have the long report many people have, whether it's a valid diagnosis or not depends on ones perspective, but maybe valid enough, because there's nothing that can measure ASD that doesn't allow for at least some judgment on the part of the professional interpreting what they see and hear even in the most structured of assessments. ASD is a construct, the meaning of which has evolved over time, and continues to evolve is what I am saying. As opposed to a broken bone, where as far as I know, it's either broken or it's not, and if there's disagreement, someone likely misread the X-ray.

I am curious though, why do you only want to hear from people who've been officially diagnosed? You're welcome here however you were diagnosed as well as if you're Neurotypical, so why does this matter to you?

Do you agree or disagree generally with the Asperger's Syndrome (AS) diagnosis?

If you agree, but have doubts about your diagnostician's credentials, check with your state occupational and professional licensing office.

If you agree, but have doubts about his choice of diagnosing AS instead of other Autism Spectrum Disorders (ASDs), others have pointed out that the ICD-10 is still as valid in the United States as the DSM-5, so either terminology is correct.

If you agree, but have doubts that he based his diagnosis on "anecdotal evidence," to many diagnosticians, anecdotal evidence is just about all that is available for consideration and diagnosis of adult AS or other high-functioning ASD. It is true that there are screening tests that he could have used to diagnose you, but they aren't diagnostic tests, so you would be expected to accept them as such.

Your most compelling arguments are that he isn't experienced or specializes in AS and ASD, or their diagnoses, and that he didn't use any assessment. Unfortunately, there is no accepted, standardized diagnostic test for adult AS or HF/ASDs. So, he wasn't really violating any diagnostic or professional requirement to test you.

I had a similar experience during my hoped-for diagnosis last year. I knew that the DSM-5 criteria were new and not completely understood and implemented clinically, and that the schism between the DSM-5 and the ICD-10 caused confusion among diagnosticians. My diagnostician determined two new AS-factor diagnoses (GAD and OCD) which confirmed what my lifelong characteristics and screening-test scores suggested. At first, I was disappointed with her choice to avoid an AS diagnosis, but I now see that she found a way to confirm what she had determined (with or without the confusion of the DSM-5 transition) and had helped me by identifying the trees, just not the forest. In other words, it was a step in the right direction for me, and confirmed my other evidence. I feel abundantly confident, therefore, in believing that I have AS.

The bottom line is that the confusion between the DSM-IV, DSM-5 and ICD-10 is probably not going to be resolved quickly. Meanwhile, we need to find ways to accept whatever diagnoses come our way, so long as they don't appear to be running roughshod over otherwise standardized diagnostic precedent.

So, I ask again, do you agree or disagree generally with the Asperger's Syndrome (AS) diagnosis? That is what will matter for the foreseeable future. Whether every T is crossed and every I is dotted probably doesn't matter as much as the general direction that your diagnosis gives you. By the way, a full-spectrum multi-discipline adult assessment at my local university involves four or five specialists, weeks of testing and interviewing, and costs $1,400 to $2,600. That was simply not an option for me (and I suspect you feel the same way).

Good luck, in any case!

Last edited by AspieUtah on 09 Nov 2014, 10:18 am, edited 1 time in total.

If your doctor is a psychiatrist, it kind of doesn't matter if they made the diagnosis or a psychiatrist who lists autism as a clinical specialty makes the diagnosis.
If you are in the US, any accommodations- work or school would likely only require a diagnosis made in the past two years [if that].

When a new DSM comes out there is often a lot of overlap from the old one to the new one for a while, so that is not that big of an issue.

Being diagnosed as an adult and female... I'm not sure how that comes into play- observation, anecdotal evidence and interview is actually very typical of diagnostic procedure in this case.

There are going to be people who say you should really be diagnosed by a specialist. In some cases I agree. If you are asking about the technical validity of the diagnosis?

It is valid for any system using the DSM. Anyone who is going to take your diagnosis into account in terms of benefiting you system-wise because of the diagnosis is not likely to care if it was a "specialist". They are going to need to know that it is a boarded degree professional.

[diagnosed more than once by separate providers with autism as an adult]

I agree with this and thinking more about it, would suggest thinking about and asking even how many women with ASD your psychiatrist saw before you. If you're the first or one of very few, he's more likely under diagnosing than overdiagnosing you. Just a thought.

I haven't been diagnosed with well much of any official diagnosis, but am responding since you mention you like scientific proof. My experience includes taking a neuropsychological test that took two days and 4 hours each day. My verbal IQ score was higher by about 30 points than my performance score. Then had an MRI and PET scan. PET scan included scientific evidence as to why my verbal IQ score was significantly higher than performance score and showed mild hypo metabolism in left posterior parietal lobe and was an adult when took the exam. As a kid in junior high grades showed discrepancy and had to go to a math tutor so there was evidence back then of learning difference or disorder. I have read much about this since it began to interest me and persons with Aspergers do have abnormal PET scans that partially explain social difficulties, etc.

I don't think the OP said she only wants to here from the officially diagnosed. That might have been a confusion.

I might have misunderstood, it was at the bottom.

I might have taken this the wrong way but it looked that way to me and I wondered why.

Oops. I guess I missed reading that restriction. I shouldn't have replied to the OP, then.

I'm glad you did, you bring a lot of great insights for me and hopefully for the OP as well.

I admire the way you were able to integrate what you were told and find a way to use it even though it wasn't what you expected and wanted.

My impression is OP might want people to say diagnosis should be done perfectly and precisely. But this is about how we come across to people. Not who we think we are. And how one comes across cannot easily be reduced to perfect and precise datapoints IMO. I think it comes down to whether people (including evaluators) meet us and just know we are weird. That to me is what HFA and AS come down to in many adults. History is important of course, but as far as current observation, you've been instructed about making eye contact but not too much, told to take turns in a conversation and talk about nothing for social conversations, learned painfully that one doesn't say what one thinks unless it's a compliment in most situations, been gently guided if you're a woman what to wear and taught to smile and show facial expressiveness until every interaction is work, and you follow the basic rules but inevitably, intermittently miss something. We don't have a way to accurately define perfectly where that's quirky and where that's ASD other than by talking to the person and those who know them. You don't survive IMO without learning to hide the AS at least a little.

I don't want to be anyone other than who I am most days, I don't even want to become magically normal most of the time. But I would like to be acceptable as something other than someone who must be pretendIng because I can't possibly be for real in the minds of others. That's why I come here. Because at Wrong Planet no one says I'm pretending when I write I'm confused and that's a great relief, to just be believed and not told to sort it out for myself every time I can't make sense of the world and the people around me.