What is the benefit to getting a formal diag??

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oblekis
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11 Apr 2008, 8:37 pm

I am pretty sure that my husband is on the spectrum. I have spoken to him about this and he agrees. Also, I think his father is also on the spectrum, too. (but we have not spoke to him about this...and prob never will)

Anyways.... is getting a formal diag just for self knowledge? How does an adult go about that? I know for my son, we got a referral to a team of Doctors/therapists. They did a bunch of tests that took about 3 hours (observing him with toys...etc), with some questions for me to answer.

Is it really necessary at 38 to pursue getting a formal diag??



Mage
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11 Apr 2008, 8:48 pm

My benefit is that my husband has stopped calling me "crazy". I did bother me a lot because I've had a lot of relatives that did have schizophrenia and bipolar, so being just PDD-NOS was a huge relief to me.



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12 Apr 2008, 12:35 am

If your husband thinks that getting a formal diagnosis with bring him some personal relief, or answers to unanswered questions, then sure, he should get a diagnosis.
Realistically, there isn't a lot of help for adults on the spectrum compared to what there is for children, so he may not get the same kind or amount of support as your son. I've read that for adults to get a formal diagnosis it can be expensive and some have said that the price isn't worth it...but others have said that the price is worth someone confirming their suspicions.

Ultimately, it's up to your husband to make the choice.


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oblio
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12 Apr 2008, 2:15 am

quite simply:

at some point in life, there might just rise a need for
the official status a formal dx provides in NT-bureaucratia

it might come with some entitlement you have no idea about

it might just come in handy cometh the rainy day

& what's the benefit of NOT getting a dx?


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Kaleido
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12 Apr 2008, 5:32 am

oblekis wrote:
Is it really necessary at 38 to pursue getting a formal diag??

Depends how much an ASD interferes with his life. If there are problems then any information just has to be useful in alleviating them in some way even if its only the fact that you understand yourself a little better. Sometimes having a formal diagnosis helps us make little changes like not travelling during peak hours on public transport or sitting in darker places in a room and thereby taking a little stress out of life. The more we know about ourselves unless we are severely impaired in some way, the more data we have to make choices that improve our lives, so yes, I think diagnosis is a good thing.

The other side of that is getting misdiagnosed. Best to find a specialist that you can check the credentials of or get a recommendation. Getting the wrong information wastes time and can cause a lot of upset and confusion.



kuiamalynne
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12 Apr 2008, 1:37 pm

Kaleido wrote:
oblekis wrote:
Is it really necessary at 38 to pursue getting a formal diag??

Depends how much an ASD interferes with his life. If there are problems then any information just has to be useful in alleviating them in some way even if its only the fact that you understand yourself a little better. Sometimes having a formal diagnosis helps us make little changes like not travelling during peak hours on public transport or sitting in darker places in a room and thereby taking a little stress out of life. The more we know about ourselves unless we are severely impaired in some way, the more data we have to make choices that improve our lives, so yes, I think diagnosis is a good thing.

The other side of that is getting misdiagnosed. Best to find a specialist that you can check the credentials of or get a recommendation. Getting the wrong information wastes time and can cause a lot of upset and confusion.


Yes, I agree. I was unofficially DXed at 15, and didn't get an official DX until I was 23 (for financial and personal reasons). While my DXes haven't hugely altered my life, I do feel as though I'm able to better understand myself and my "isms." I've also been able to more reflexively cope in certain situations, or I'm at least able to more authoritatively tell others that I have communication differences/difficulties and might react in a way that seems odd or off-putting or rude to them -- but this doesn't necessarily mean that I'm intending any sort of ill-will.

Additionally, I'm a graduate student and I teach, and while I haven't yet requested any accommodations specifically, working through disability services has been important. I know that as my academic career progresses, I will increasingly need that sort of "back up." Also, because networking at conferences and other departmental social events is often necessary for my particular field, I need to work closely with one or two advisors and get sincere help on interacting with others -- all to a degree that others in my position don't need help with.

I would also stress that seeing a specialist, especially one experienced with adults, is important if he does seek a DX. When I sought an official DX so I could get documentation for school/work, I encountered some difficulties locating a professional. Initially, I began my search through a couple universities in Chicago (where I was living at the time), but those were dead-ends as they mainly concentrated on LDs such as ADHD and NVLD, but not AS in adults. I eventually was able to locate a specialist who worked out of the suburbs, spoke with her on the phone and met once in person before deciding, and then determined that this would be the most "accurate" venue for seeking a DX.

As a kid, I was tested generally for LDs and not specifically for AS, and only some of the tests were similar to the ones I took as an adult. As an adult, the tests were more numerous and took far longer. My doctor spread them out over two months, and I went in about 5 or 6 times, I believe. She also took a detailed history and spoke with my parents and husband, and I also needed to bring in detailed academic records.

Hope this helps.



aninimous
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13 Apr 2008, 12:36 am

I suppose it depends on how much personal relief it would bring him and whether the diagnosis could be used for any job accomodations.

Personally, while my doctor and myself suspect I may have Aspgerger's, we both agree there isn't much point in pursuing a formal diagnosis. I already am diagnosed with Social Anxiety Disorder and treatment for that has solved many of my past social problems. As well, my mild co-ordination issues are limited to my hands and are covered by my Dysgraphia diagnosis.



oblekis
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13 Apr 2008, 6:27 am

Thank you all so much for taking the time to respond and telling me your experiences. It helps us tremendously. I love this site so much, it is so valuable to me and everyone is so willing to share what they have gone thru...it is much appreciated. :D