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A possible Aspie wonders about the downside of a diagnosis

Dave-V

Well-Known Member
Hi folks

I've been lurking here for a few months as I've been reading about Asperger’s. My story began last year when I started seeing a counsellor. After a few sessions she asked whether I'd ever been assessed for ASD. The question seemed really odd - I'd started seeing for help with various issues, mostly to social interactions and autism was something I knew little about. Later, when I tried to explain this to my partner, she actually finished the sentence for me, saying she'd wondered for a while if I was an Aspie.

So I started reading up on Asperger’s. Some blog entries were almost frightening as they described so accurately what I'd been experiencing for years. But then I'd read something else and think 'this is nothing like me'.

Briefly, Asperger’s seems to fit because:
  • I can't "read" people. I do not understand what's not explicitly stated - but should I really believe what I've been told? A casual conversation with a work colleague can be excruciating.
  • Several years ago I was diagnosed with Audio Processing Deficiency. This gives me problems when several conversations are happening, or there is a high level of background noise, or people have strong accents. Sometimes it’s like a delay between when I hear the voice and when I understand the meaning. This is suspiciously similar to the audio issues some Aspies describe.
  • I become obsessed with interests or ideas - to the extent that I will forget to eat and work into the early hours of the morning. These interests could be anything from investigating a family tree or local history question to learning everything I can about shoe sizes or doing all the Sudoku puzzles I can find. Although not a tidy person, I can spend hours arranging and cataloguing items. For example, I have thousands of aircraft pictures, each of which I must correctly label. With this the Internet is my biggest ally and my worst enemy!
  • I cannot bear to be touched softly or gently. Likewise the feel of food is the far more important than taste when deciding if will eat something.
  • Recently I have realised I may have some stims. These include finger tapping or imaginary typing, twitching my legs, and sometimes swaying. I'm lost without an object to handle and caress - my current favourite is a light bulb I replaced when fixing the Christmas lights last year.
  • In the AQ test I score relatively high (between 38 and 41 depending how conservatively I answered the questions).
  • I'm also epileptic. Whilst I know this is not diagnostic, I have read that epilepsy is more prevalent amongst those with ASD.

I'm in my 50's now, but Asperger’s seems to explain so much of the good and the bad experiences in my life. At first it seemed sufficient to know that I have Aspie tendencies and that, armed with this knowledge, I can better understand my strengthens and handle my weaknesses. However, there are aspects which make me question this diagnosis. For example I don't experience meltdowns in the way many Aspies do. I also wonder whether my stims are just bad habits, if my special interests are as intensive as might be expected, and should I be even more routed in a routine?

I therefore feel an increasing need for a formal diagnosis.

I attempted to discuss the possibility of Asperger’s with my GP, but he dismissed the possibility out of hand. However, as time passes it seems more important to have an official diagnosis. A private diagnosis seems prohibitively expensive, so it seems I must go back and push this with my doctor.

Now here's my real question in all this waffle. A diagnosis through the NHS will remain on my records, so may become available to new employers, insurance applications or who knows what. Should I be concerned about this? Many people post about the boost they have received from a diagnosis, but do some people regret taking the step?


Whether I’m Aspie or not, thanks for a great site.
 
Hi Dave,

I was formally diagnosed when I was 50 and for me it was best decision I ever made. My employers know and their only question was "Can you do the job?", a year on with them and my manager has asked me to take charge of a new section.

The fact it is on my medical records is immaterial at the moment, as I get older it may be a saving grace should I require support. No insurance company has said it would adversely affect my premiums, and so far it hasn't. Because I drive a heavy goods vehicle as part of my job I had to inform the DVLA, I gave them my doctors diagnosis that I was fit and capable and heard no more.

My workmates know I have asperges and a couple have looked it up, no-one has said anything negative about and were really supportive during my 'bedding in' time on the job.

The only downside was in forming a relationship, but that was more down to me than any prospective partner as I raised the bar in what I was happy to settle for. That has just been met after 10 years, so all in all I have no complaints in being diagnosed.

Welcome to the site, you'll find a lot of resources here to help you on the journey.
 
Hi Harrison,

Thanks for that.

I work in a small company as a computer programmer, but I'm sure there would be no problems here. My concern is more about the future and whether this might go against if I have to apply for another position.

Congratulations on your relationship. I was over 40 before I met my partner so can appreciate the significance of this.
 
In the industry you are in I would guess you'll be safe. My two sons are both programmers and aspies, plus I have aspie friends in the business, and non of them had a problem moving between jobs that I know of. My view is that your industry is the safest place to be an aspie, I should have stayed there thirty years ago.
 
I work in a small company as a computer programmer, but I'm sure there would be no problems here. My concern is more about the future and whether this might go against if I have to apply for another position.

Welcome To AC, Dave. Years ago I worked for two years for a major Silicon Valley entertainment software publisher. Looking back over the years, I realized that the place was swimming with Aspies. It was the only place I found myself loving the job and the people I worked with. Can't think of a better, more productive place for Aspies to be. :)
 
Thanks for that feedback.

Now you mention it, when I think back over the years a few characters spring to mind who seem prime candidates to be Aspies.
 
Welcome to AC, Dave-V. I'm pretty new too.

Like you, I felt I recognized a lot about myself, and understood my history, once there was a pattern with a name to how I experience the world.

The only downside to being diagnosed aspie that I've found is figuring out how to describe my needs to someone without using a potential trigger word such as high-functioning autism or aspie or Asperger's. As soon as that slips out, I have to battle all the things they think they know--many of which they won't tell me. Or genuine uninterest--"there's nothing wrong with you, everyone knows that __________________<fill in with your favorite dismissive comment citing one of the aspie myths, such as no emotions or empathy>."

Aspies hang out a lot in finance, IT, and mechanical work, apparently.

Currently, I just describe my issue without assigning it a name, which seems to work better. If the other person uses the term "aspie," then I can choose whether to out myself.
 
Thanks for that, Aspergirl4hire.

I've reached the point now were I feel a diagnosis (even if its not Asperger's) is needed to move forward.

I discovered Liverpool NHS have an Asperger's Team, so phoned them up today. I was really looking for backup information in preparation for seeing my doctor, but they now now accept self referrals, so I shouldn't have to go through my GP to get a diagnosis. :) This removes the first hurdle!
 
I went thru my GP, kind of a safety catch, not knowing exactly who your getting. Difficult to find qualified practitioners, least wise where I come from. Good luck, I appreciated my diagnoses.
 
Welcome Dave :)

I hope you're settling in nicely here. You'll find that most of us here won't fit perfectly under all the listed traits, and symptoms, that AS tends to produce. Each person seems to house their own collection of these, at various extremities. I hope your diagnoses goes well. Be sure to let us know how you go.

A few links, which you may find useful:

Resources: Autism & Asperger's Resources | AspiesCentral.com

Tony Attwood:

Home

The Complete Guide to Asperger's Syndrome | AspiesCentral.com
 
Hi there.

Thanks for the welcome - I'm finding everyone here is so supportive towards each other.


...most of us here won't fit perfectly under all the listed traits, and symptoms, that AS tends to produce....

That seems so true, but it's that very variability which is now pushing me get a diagnosis.


At least I have managed to contact the local NHS Asperger's Team directly. This is where my GP would have referred my - I'm just trying to skip that first hurdle!
 

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