Is an official diagnosis worth the effort? + My story

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Hey guys and gals,

I've been an observer on this forum for a couple years but this is 1 of a handful of actual posts. I'm wondering, from personal experience, if getting an official diagnosis is worth it and helpful? And also peoples thoughts on the effectiveness of therapy and CBT?

I AM fairly lucky in the fact that I do blend in, I often just come off as shy to most people. Whenever I've tried to sincerely open up to close family or friends about having aspergers (Though undiagnosed) they don't believe me. My friends just say "Nah you're just quite man." Which is fine that they see me as normal. My long time ex-girlfriend of 6 years didn't believe me either (We broke up 5 months ago), and she knew me best. She saw all my "quriks" but liked them and thought they were cute. So I never talked about it again with her.

But my family, of all people, sort of laugh at the fact. Which is extremely frustrating as my mother is quite clearly on the autistic scale but doesn't realize it. I also have cousins who have more severe Autism. So I'm seeing a pattern... But luckily I am mild.

Even though no one close to me believes me or understands, I know what I have and I'm curious if the help that is out there actually HELPS. This whole thing feels like a big secret of mine that know one understands and I feel like I need to open up to someone and gain some insight. I don't connect with anyone and it all seems fake. I do quite well now, but not without EXTREME effort to "Act NT" and it's very exhausting.

I work in sales so you can imagine the social strain that has on someone with aspergers. I end up passing out as soon as I get home every day from exhaustion... But I need to make a living. I am only able to interact with customers over years of experience training myself to play that character, but I have a terrible time talking to anyone without my "script."

As the website title goes, I feel like I am on the wrong planet.

Any advice is greatly appreciated!

'Passing out once I get home due to the strain' sounds very familiar.

My describing essentially the same thing is what got my therapist to ask "Have you ever been evaluated for autism? My autistic patients say the same sort of things you are.'

I'd suspected autism since my early 20s. Here he was suggesting it without me having told him anything.

When told what I suspected, he said "Tell your doctor I want you evaluated for autism'.

Get yourself diagnosed.

If nothing else, you'll have a name for what it is you can see in yourself, and you have a right to that.

Have you taken any of the online tests?

It was worth the effort for me. My career was crumbling out from under my feet after 30+ years of being fired every 15 months, I couldn't find anything else that I was any good at and if I hadn't been able to qualify for Disability for AS, Depression and Anxiety Disorders, I'd have ended up starving on the street.

That's true. Has it helped you knowing for sure?

My ex-girlfriend always made the argument that "why do you have to put a label on it, whatever it is it's you." Which is true, but a part of me feels like I need a confirmed statement. I've suspected it for the last 6 years after putting pieces together and reading/researching.

I've taken a few only tests and scored "Very Likely" on all of them. My score was 38 on the AQ test.

Only if you need help.

It was a positive experience. I got a diagnosis mostly encouraged by my loved ones who were worried about me. Things had to get pretty bad for me to consider it. It took me a few years to come to terms with my diagnosis, but now I accept it and myself much more.

There's definitely a peace of mind when you're told you're on the spectrum by a licensed professional who's specialty is autism and Asperger's Syndrome.

"Knowing for sure"? Sadly, the jury's still out. Long story, but the evaluation will likely happen this coming spring.

As for "labels", I'm so sick and tired of people talking about that. Things have names, for cryin' out loud, and if you have a neurological condition that affects how you think, how you interact with the rest of the human race, and how you end up feeling at the end of an ordinary day, you have the right to have that condition recognized, and that includes its name being acknowledged.

Next thing, people will be complaining about the terms "diabetic" or "blind" being used.

Ignore them and don't hesitate to get diagnosed if that's what you want. You deserve to know.

having an official diagnosis allows you to get an IEP in school which can be used to bludgeon teachers into accommodating you. Some benefits include testing time, location and lenience in other areas as well as preferential treatment in bullying situations etc.

HOWEVER! You can be tracked into special ed or remediated classes, leaving you unprepared for college. Employers can and will discriminate against you. You will be precluded from military service of any kind. I cant speak as to treatments or cures other than that as I understand it there are none with consistent results that are safe (or even unsafe) for a doctor to prescribe. Police will deal with you differently when it pops up on their info screens during traffic stops and whatnot. I do not know if some insurers now cover autism related expenses but when my brother was younger we had to use the family lawyer to argue every single disbursement or pay out of pocket unreimbursed.

IMHO it is not worth it. You don't want it on your medical records. Take an informal test or one that won't be coded for researchers if you really must know. Personally I would just say if you identify with a lot of what people complain about here just consider yourself one of us and figure it out from there.

One of the annoying things about dealing with NTs is their refusal to see Aspergers for what it is. At this stage in my life, I'm 56, when I come across the "everyone does that" response to the quirks of Aspergers I take it as a mark agianst their character not mine. An official diagnosis wont change their narrow view of the world, though if it sets your mind at rest it would be worth persuing.
Do you think your mother will change her attitude withan official diagnosis? Especially if she herself is on the spectrum and indenial? I doubt it.
Best wishes

There is no one answer for everyone. Getting diagnosed has been great for some bad for others.

The first and in my view the most important question you have to ask yourself is will there always be doubt if you do not have it conformed by a professional? And if you have it confirmed will that end that doubt?

It is a shame I have to ask this but I must. The DSM 5 is now out. While clinicians are not bound by the DSM 5 and their is some resistance it is a very realistic possibility you will be diagnosed with Autism Spectrum Disorder instead of Aspergers. Will that give you the confirmation you need?

I agree that while your family might change their mind because you got a diagnosis I would not count on it. You are an adult now so you got to do what is best for you even though it might hurt their feelings.

You need to ask what are the services are available in Ottawa in regards to changing you career. therapy/treatment and disability payments should you need it down the road. What are the negative consequences etc.

I bolded changing your career because us Aspies tend to despise change so much that we stay in relationships we know are bad for us. I thought I was good at being NT but passing a job interview for a sales associate nevermind keeping the position. Wow. While I admire your willpower you will destroy yourself mentally and psychically by staying there. You may deteriorate so gradually it will be unnoticeable or maybe one day it will happen all at once but someday somethings got to give.

Good Luck keep us informed

How do employers or police find out you've been diagnosed with ASD?

I don't know how it is in other countries, but you have no real medical privacy here in the USA anymore.

HIPPA, in its shortest definition, should read as follows....

"This office will not share your medical information with just any bum who walks in and asks, but on Addendum A is a list of all entities and agencies who we will transmit part or all of your medical records as required by law or upon request by an authorized party."

Some privacy advocates say to cross out the HIPPA form when you go to see a doctor and write over it with, "REFUSED FOR CAUSE. TRADITIONAL DOCTOR-PATIENT CONFIDENTIALITY ONLY." Under traditional doctor-patient confidentiality, a doctor will only release information with the presentation of a court order or as otherwise obligated by the cannon of ethics (e.g., you're threatening to hurt yourself or others).

this is irrelevant. the supreme court rules that documents in the possession of a company belong to the company and not you, therefore DPC does not apply to any private hospital that uses digital records.

In my case it was, because I am going to have a college education payed for. Which is something I wouldn't have been able to do otherwise. It was also beneficial for a million other reasons. I agree with the other posters who have said that there is a peace of mind when you realize that you have aspergers. IMO getting a diagnosis has that effect because you now understand why you have struggled in life and can now take steps to improve your life because of the self awareness.

I try to sum up my experience so excuse me if I'm sounding condescending.

Now I realize that a significant part of the folks who get themselves diagnosed are only too introverted and socially inept often with bad histories of being rejected or otherwise unsuccessful in life. This may be true even when many of their symptoms fit in the diagnostic criteria of a PDD/ASD. If your life history contains many of the "typical" elements of an ASD person you may just turn to someone at the other part of the world and get the desired AS diagnosis after a few hours of discussion of life history and current symptoms, for a moderate fee, of course. Some of them seek the diagnosis for explanations, some of them for the feeling of belonging to fellow like-minded people. Therapy doesn't seem to be the primary reason (I'm speaking of adults).

So, primarily, your "symptoms" or difficulties you are facing with will not pass as you continue your living as an adult. They never will, and according my experience therapy may help you in some areas, but your major issues must be solved by yourself, alone.

The idea is that you have to realize one day that you are the only person responsible for your life and have to take it in your hand, making the decisions for yourself and exclude others from the process. You'd have to speak up, stand up, and accept the consequences of your decisions. Sometimes, you'd have to defend your decisions, no matter if they appear productive or not at the moment. You just have to believe in what you do, and why you do it. During the process, getting to know yourself is essential. If you are a quiet, introverted person, you probably feel alien in a world that praises extroversion only (preferring the man of action over the man of thinking). Introverted people see differently the world around them than extroverted do, only many of the introverted become pseudo-extroverted during conforming to the (currently) prevailing cultural standards as an obvious means of survival.

Introverted people often do find relief in "special interests". They socialize, but they do it differently, their feelings are often deeper and they don't need a constant buzz around them to feel contented regarding their social connectivity and status. They naturally need more thinking of what they should do with their lives and how they can manage to navigate the social arena most efficiently.

Last edited by OJani on 25 Dec 2013, 11:40 am, edited 1 time in total.