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Sandee
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26 Jun 2011, 3:13 pm

I have not been on this website in a while. My name is Sandra Gregston and I have been reading up on Autism (more specifically Asperger Syndrome) in adults since 2006. I have developed a love relationship with studying this topic.

I'm now 35 and about to finish my MBA (Masters of Business Admin). I've read up extensively on AS and I seem to have many of the traits associated with AS. I'm finding out now that I'm not the "business person" that I thought I was. I'm now considering going toward neuroscience (you can study Autism and other neurological disorders in this feild), or pyschology and work (slowly) toward a post grad degree in neuropychology. I'm at a major fork in my life - do I go into the sciences or try to get a position in Human Resources so I can then get my PHR (You have to take a test to get the PHR certificate and 1 year experience in the field). I seem to think that I will be better prepared to own/run my own employment agency (designed for adults with Autism/Asperger Syndrome) if I have HR experience behind me. Employment laws and ADA laws are a BIG part of businesses - and they are changing all the time.

I'm seeing a professional therapist now. But I just found out that some therapists do not "Believe in" diagnosing people with an "issue" such as (for example) Bipolar, or depression or Autism. Why is this? Due to not feeling comfortable with diagnosing due to not being well versed in the specific diagnosis.

Well, I guess sometimes in the mental health field or in practice - if one is diagnosed with something like a mental health illness - people CAN be stigmatized by others in the professional area (MDs, psychologists, etc). I mean, I guess some people CAN put little Suzie in the "She can't do THAT, she has Bipolar, and she can't DO that, she has depression - BOX". You know - the stigma! If there is a stigma of mental health diagnosis - then I'm sure there is (or could be) a stimga of having Autism or Asperger Syndrome.
The questions

Why would a professional not desire to diagnose someone with Autism? Why would a professional just do an assessment on someone and fail to go the entire distance to diagnose their client? Is this ethical to do an assessment and not diagnose their client?

Now the meat of the issue. Should I be so freaking concerned about finding a person to diagnose me with Asperger Syndrome? What would REALLY happen if I did get a diagnosis of AS at the age of 35? Would it really HELP me? I mean, I've proven that I can go to school and go through an undergraduate degree (in business) and went onto an MBA. But on the other hand - many adults with Asperger Syndrome do very well in college or in university. Research is another great area for people with AS. What are the implications if I do not EVER get a diagnosis of AS? I mean, I don't have to bring it up to an employer, it is a personal choice! Do I consider myself as having AS? Yes, I do. I've read up on it enough to see that I match it 98%. (I do see my differences between males and females that have AS, the males typically "fit" the DSM-IV more, females can "get away" or "hide" their AS more, which could be very bad for females).

So, what should I do? What are the major benefits of getting a diagnosis finally at the age of 36 or later?
I know it was a long post, but I don't know If I should be so concerned about getting a diagnosis! thank you



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26 Jun 2011, 3:39 pm

I've been grappling with exactly the same kind of dilemma myself - in fact I hold professional qualifications that I fear might be revoked if I get an official "diagnosis".

In my case the ONLY thing I would really gain from a diagnosis is that I could then feel fully "invested" in the notion / fact of having AS, which is something I'll have trouble with until and unless I get a diagnosis.

In a broad sense I think the only people who might get real world practical benefit from diagnosis are those who are quite severely affected - such that the official "piece of paper" would help them get benefits and accommodations for their condition.

In short, I think that official diagnosis is of very limited use to those who are only mildly affected and who are - on the surface at least - fully functional and independent.


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Tressillian
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26 Jun 2011, 3:57 pm

It's also possible to "hide" behind a diagnosis. Meaning, you can start blaming the diagnosis instead of trying to solve the problem. For people who are high functioning and able to act independently, a diagnosis has no value for getting help and the chance of it being a hindrance is pretty good.

The real goal is to get you where you want to be in life (assuming you're not there). For high functioning and independent people an assessment is just as good as a diagnosis because it helps you understand yourself better and you make changes based on that.



littlelily613
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26 Jun 2011, 7:46 pm

Not all therapists are qualified to diagnosis ASDs, which is perhaps why you have experienced some hesitation there. You need to find a therapist who can specifically diagnose the condition. They must have the qualification and training or it is not valid. I am 27, and I have had no problem getting the psychologist I contacted to do the assessment.

As said, it should only be a concern to you if it is impacting your life in some way or another. For me it is: I am 27, have no friends, and am completely dependent upon my parents. Many people have what they might think is mild AS, but they are independent, have careers, and might be married with children. These people often don't have a reason to go for a diagnosis--it does absolutely nothing but satisfy their curiousity. So, if it is not going to help you in a productive way, I personally don't see the point. In order to get a diagnosis, you have to be functionally limited in one way or another anyway, so if you are not that, you might be wasting your time and your money. If you do feel as though you are being limited as a result of a possible ASD, then you might want to consider checking into it. That'll be something you'll have to think about.



Last edited by littlelily613 on 26 Jun 2011, 9:01 pm, edited 1 time in total.

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26 Jun 2011, 7:50 pm

^what she said :)

If you aren't in some way disabled by it, you don't have it. If you are, you may well.



kahlua
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27 Jun 2011, 4:07 am

Personally a diagnosis is for myself only. It would explain many of the problems I had as a child, and problems I still face today.

It is not something I would disclose.

I have found an expert in AS for diagnosis rather than going with some random psych who has read a few books about it.

If you're happy with your life, then just move on. If you need answers and explanation, then look at seeking a diagnosis\assessment. It is expensive, so you need to work out why\if you really need to go down this path.



Angnix
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27 Jun 2011, 4:29 am

I'm also confused in this area. My current therapist and my last one are/were pretty persistent that I have AS, they both hold a Master's degree. My current therapist thinks I might need an assessment. Can these people diagnose?

But then there are people that I know who work in the mental illness field who know me personally who say they are familiar with AS and I don't have it. They site that I converse well and can hold eye contact. One of them even said I seem to be hyper-empathetic.

8O


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Sandee
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27 Jun 2011, 8:25 am

Ah yes. . .well, I may be 2 months from completing my MBA - but guess what I'm not working, haven't been working since I lost my job in March 2007. I had four interviews since Feb 2011, and STILL no freaking job. It seems I CAN"T SELL MYSELF FOR THE LIFE OF ME.

I need a damn JOB. I live with my mother and I DESIRE to be independent like I used to be. I used to work full time. I used to live on my own or a brief period of time back in the 1990s, before the economy took a large dip.

If it wasn't for my MOM, I'd be HOMELESS - uh - another thing, I'm not on SSI or SSDI. I was told I don't 'qualify'. I applied in 2008. So, yeah, I"m NOT where I 'want to be', and my therapist has a PhD. I think she's not trianed in ASD's. I'm going to ask her when I see her next.

But I still don't know if it is ethical to give an assessment - without a diagnosis. I can do the assessment for FREE online (albeit, that will take about 1-2 hours). Empathy Quotient and the Autism Spectrum Quotient designed by Baron-Cohen and Wheelwright. I downloaded the spreadsheet yesterday. I took the ASQ about 20 times already, and you can find both very easy due to Google! I don't think doing this will be the same as having that piece of paper that say I have it.



ocdgirl123
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07 Jul 2011, 10:51 pm

OK, sorry for my ignorance, but can someone please tell me the difference between and ASSESSMENT and a DIAGNOSIS?



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07 Jul 2011, 11:37 pm

ocdgirl123 wrote:
OK, sorry for my ignorance, but can someone please tell me the difference between and ASSESSMENT and a DIAGNOSIS?


An assessment determines whether you should be diagnosed and with what. A diagnosis is when the professional says "Yes, you meet the criteria for this condition as defined in the DSM-IV or other text."



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08 Jul 2011, 5:52 pm

kahlua wrote:
Personally a diagnosis is for myself only. It would explain many of the problems I had as a child, and problems I still face today.

It is not something I would disclose.

I have found an expert in AS for diagnosis rather than going with some random psych who has read a few books about it.

If you're happy with your life, then just move on. If you need answers and explanation, then look at seeking a diagnosis\assessment. It is expensive, so you need to work out why\if you really need to go down this path.


I doubt the OP is happy with their life - I'm certainly not either - yet we both evidently are capable of holding jobs. A couple of years ago I finally found everything too hard and actually took close to 18 months off work - became a home dad. THAT WAS BEFORE WE SERIOUSLY ENTERTAINED THE TOUGHT OF MY BEING AS OR LOOKED INTO AS. It was shortly after I went back to work about 8 months ago that a colleague suggested I fit AS very strongly and my wife and I looked into it. At this time I consider myself "undiagnosed"

I have a job and family - but my family is my only "social circle" and I cannot describe how hard it is to achieve and maintain this outwardly "normal" life (yay). My wife has suffered terribly thanks to me being the way I am crippling our social life. AS has provided an EXPLANATION of why getting by day to day is so damned hard for me (and my family). It provides no excuses but on the contrary has been a great help in that I feel better within myself for the realisation that my problems aren't simply because I'm somehow wierd in a way that I could simply fix if I really made the right kind of effort - but which I haven't been able to manage - which has always been very disturbing and upsetting.

It means that we can drop that "angst" and guilt and just get on with it - which in most things simply means carrying on with doing what I've been doing for over 40 years already (now without the confusion and guilt etc.) - and it means now that my wife and I are extending even beyond that - ie. now knowing things are not just down to my being "wierd" I am making more effort to do more things and my wife is able to be deliberately and effectively supportive because she knows in quite good detail just what's going on.

It has been difficult to invest myself fully in the notion of being AS - tho as time goes on and everything continues to fit and especially when strategies geared around my issues being from AS work out very successfully - it has become easier.

Diagnosis for me would make me impervious to "diagnosis snobbery" but I'm not sure that's worth putting myself out of work and my family on the street... - tho I guess that yes, the diagnosis would then make it easier to get assistance.


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littlelily613
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08 Jul 2011, 11:20 pm

Angnix wrote:
I'm also confused in this area. My current therapist and my last one are/were pretty persistent that I have AS, they both hold a Master's degree. My current therapist thinks I might need an assessment. Can these people diagnose?


It depends. My first diagnosis came from someone with a Master's degree. My second came from someone with a PhD. The only thing that made the second valid and the first one not is that the first psych did not do the standardized testing while the second psych did. Both were qualified to make the diagnosis, the first one just did not use the proper procedure. There are psychs, both with a Masters or a PhD who can diagnose ASD. There are also some with either degree who cannot. My regular psych is a PhD, and she suspected it in me, but could not diagnose me, while the one with the Masters degree could diagnose me even though she has a "lesser" degree.


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littlelily613
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08 Jul 2011, 11:25 pm

Sandee wrote:
I can do the assessment for FREE online (albeit, that will take about 1-2 hours). Empathy Quotient and the Autism Spectrum Quotient designed by Baron-Cohen and Wheelwright. I downloaded the spreadsheet yesterday. I took the ASQ about 20 times already, and you can find both very easy due to Google! I don't think doing this will be the same as having that piece of paper that say I have it.


Those online tests are not really assessments anyway. They are just online screenings that are not always accurate that say whether you should pursue a real diagnosis or not. If you score high on them, you may want to pursue the diagnosis. FYI, my current psych took the EQ test on here after I told her I scored really low. I know my EQ score is low anyway, but she said the test was not a real EQ test and was set up really strange. You get that problem a lot with online screenings. These online assessments, btw, are also not what the psychologists base their decisions on. My psych, who diagnosed me with classic autism, did not care to ask what I got on either the AQ or the EQ. Those tests were not even considered at all during my official assessment.


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09 Jul 2011, 12:03 am

littlelily613 wrote:
It depends. My first diagnosis came from someone with a Master's degree. My second came from someone with a PhD. The only thing that made the second valid and the first one not is that the first psych did not do the standardized testing while the second psych did. Both were qualified to make the diagnosis, the first one just did not use the proper procedure. There are psychs, both with a Masters or a PhD who can diagnose ASD. There are also some with either degree who cannot. My regular psych is a PhD, and she suspected it in me, but could not diagnose me, while the one with the Masters degree could diagnose me even though she has a "lesser" degree.


I am fairly certain these are official diagnoses, although the ADOS/ADI-R evaluation is much more accurate and less likely to misplace someone into the wrong category.

Some agencies will only accept the full evaluation for access to services and such, so it may as well be the "official diagnosis."

I'm actually getting frustrated - I was able to see someone who is qualified to diagnose, and we did an interview/evaluation at which she said I am obviously AS (and she has a Master's degree). Unfortunately, I need to get a full evaluation from someone with a PhD for my SSI application - not to mention the lack of testing adaptive skills and such. I tried to get my caseworker to suggest someone but she kept telling me that I had no need for it and that I needed to focus on my "real" diagnoses (she wasn't listening when I stated that I was really diagnosed with ADHD and AS).

So mainly, I'm trying to find someone in the Seattle, Tacoma, or Olympia area who will take my Medicaid open card and do A-DIR and ADOS so I can get that part over with.



littlelily613
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09 Jul 2011, 12:40 am

Verdandi wrote:
I am fairly certain these are official diagnoses, although the ADOS/ADI-R evaluation is much more accurate and less likely to misplace someone into the wrong category.[/qupte]

I thought I had an official diagnosis. According to both my psychs (so this includes the one who is not getting any monetary benefit from telling me this) have told me that in order to receive a proper diagnosis it MUST go through the standardized procedure. This is the ADI-R and the ADOS test together, or those tests in conjunction with a complete psychoeducational analysis. I was told that what I was given was actually a screening, and they used the screening to give me a diagnosis which is not official (both my school and the gov. say I had to go get something more detailed in order to be official as well). A lot of psychs, I have read, do that: give the screening, then diagnose based on that without going into the complete assessment. Instead the screening is supposed to show them that they really should be moving forward with the complete ADI-R and ADOS.

The psych I saw who just diagnosed me also said I would HAVE to have a parent or someone else who knew me when I was young come in for the interview. I insisted that I was 27 and shouldn't have to, and even "threatened" (politely though) to go somewhere else (I did find a place who would see me without my parents). I was told that it is impossible to do an accurate, official assessment without this interview because the diagnosis depends upon a time that I have no recollection of. Current behaviour is not as important as this early childhood behaviour. They told me they would not do it without this.

That was another thing missing from my first diagnosis. I convinced that clinic to allow me to attend without my parents. As a result, they got some inaccurate information because I did not know it all, nor was I aware of the extent of my disability. As a result, I got a wrong diagnosis because of information that was lacking that they did not verify with someone who was there and actually remembers.

Verdandi wrote:
I'm actually getting frustrated - I was able to see someone who is qualified to diagnose, and we did an interview/evaluation at which she said I am obviously AS (and she has a Master's degree). Unfortunately, I need to get a full evaluation from someone with a PhD for my SSI application - not to mention the lack of testing adaptive skills and such. I tried to get my caseworker to suggest someone but she kept telling me that I had no need for it and that I needed to focus on my "real" diagnoses (she wasn't listening when I stated that I was really diagnosed with ADHD and AS).

So mainly, I'm trying to find someone in the Seattle, Tacoma, or Olympia area who will take my Medicaid open card and do A-DIR and ADOS so I can get that part over with.


Sorry you are having a difficult time! Hope you get everything worked out soon!


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AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)


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