To Get A Formal Diagnosis or Not? ADVICE please!

Hi Sashina,

I had the same experience - the whole process was pretty traumatic and I wasn't prepared for it at all.  My anxiety went through the roof following the assessments and I convinced myself I was being a hypochondriac and that I had wasted everyone's time.  Turns out I am autistic and my reaction to the whole process was a result of my not being prepared and having a coping strategy in place following the assessment.  Keep an open mind and don't jump to conclusions either way, but it is good that you have a back-up plan in place.

Hope you get your results soon.

Hi Danny, what did you end up doing? 

Update: I did get a referral from my GP, and was able to arrange an assessment through my employer's private health insurance (not all insurers cover it). It took a bit of time to find a psychiatrist who worked with my insurer (they would only cover assessment by a psychiatrist or psychiatrist-led team), but I had the assessment in mid-December.

It consisted of a session with both a psychologist (who also interviewed my mother by telephone) and the psychiatrist. The former was a positive experience but the latter was pretty awful. I wasn't prepared at all and it felt like a job interview! No 'bedside manner' at all and what felt like very little engagement, which all seemed pretty inappropriate for a mental health professional. 

The information from my mother was not deemed to be useful enough, and the two practitioners were going to have to confer further on my diagnosis. The Christmas break has intervened, meaning no diagnosis until the new year. To be honest, I'm preparing myself for a negative diagnosis, and have a back-up plan ready.

What I had not prepared for was the anxiety it would cause. Don't underestimate how much this process can take out of you. If you're working, I'd strongly recommend taking a day or two off work to give yourself the mental space. 

I'll report back in the new year!  

I too have been wondering whether to get a formal diagnosis. Like you, I think it will help me to know (and have confirmed) why I am the way I am.

I found writing down every probable Aspie thing in my life quite cathartic, though I am only up to 11 pages so far! Tbh since I figured it out for myself, I haven't had the run of emotions that most others have described, just plain and simple relieved. Relieved that I finally know why. It is enlightening, isn't it?

I think I will go down the formal diagnosis route, and I may quietly mention it to my boss (though I have a sneaking suspicion that he already knows). 

All the best with your appointment and hope you find peace and contentedness at the end of the tunnel

I've been referred by my GP, accepted for diagnosis and am awaiting an appointment.

Why do I want formal diagnosis?  It's information!  I'm curious, I love knowledge and want to know why I am as I am.

What will I do with that information?  Well, it will help if I ever need to change job, will formally explain to my current employees why I react and work in certain ways.  I've already adapted at work by obtaining noise-cancelling headphones which work with the phone and computer - they help cut the background prattle out.

Even thinking of getting the diagnosis has been enlightening - writing my (currently 28 page) document of my history and traits has shown me that it's not just me imagining it or being wierd, but that it's real and has a cause.  Diagnosis, be it formal or otherwise, lets me be easier on myself.  So when I'm greeting people (Hi, rather than 'how are you - doing well?', etc) or abrupt on the 'phone at work, I know it's not me being deliberately rude, but because I can't (easily) help it.

Then again, my wife doesn't wish to seek formal diagnosis - and that's OK.  Her employer, we suspect, has a lot of Aspies working for them in similar roles to her, and it's a profession known for being suitable for Aspies/ HfASD. She has enough knowledge to look out for problems she may encounter.

Hi Bonniepurple - I feel the same, but with that niggling fear that a 'negative' diagnosis could leave me feeling pretty disappointed, to be honest. It all makes sense to me now, in my mid-40s... I have a fear I'm not 'extreme' enough (I'm a high-performing professional with fairl full-on job, but having just read Sarah Hendrickx's Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age, I can identify many of the coping strategies I've subconsciously adopted over my life to fit in.

I've not yet approached my GP, but am going to ask when I next see her.

Good luck everyone!

Yes, get a "formal diagnosis" for LEGAL REASONS (!). It is just like any other non-visible "disabilly", in that, so long as things in your life go well, you need NOT declare it... but as soon as something bad happens such as freezing-up or freaking-out (!) then you CAN state THAT as a reason why (even if you don't understand why for yourself at the time). It is a sort of back-up, giving you a second chance at re-stating your case/position or/and opinion. (...Usually. (!))

Thank you! That’s really helpful! Looking back over my past employment I feel that I’d been misunderstood and treated badly, and I couldn’t understand why things had happened the way they had, and that a lot of the way I was treated was through being seen as neurotypical, if I’d had a formal diagnosis then I would have been better protected. The irony is that i worked in a special needs school.

Thank you for sharing your experience, it’s a really awful feeling to be hounded out for no clear reason and being left confused. 

Back to self diagnosis vs formal diagnosis !!!!

Forgive me for repeating what I wrote here several months ago.

I need money to live on but I am finding it very difficult to find paid work.   Currently I have people from four agencies helping and advising me.

After my latest suicide attempt I was advised by a mental health team to get a formal diagnosis and my sister was a driving force behind this.  Before then I knew next to nothing about autism.  My sister works in an Autism friendly workplace and said that two of her workmates are officially autistic, yet I seem more autistic than them and have more problems with life.

I described an incident back in 2001, which really hurt me.  I told them (mental health workers + sister) how I was sent by the job centre on a work training scheme which guaranteed a proper interview at the end with a major supermarket (Tesco).  The job centre made clear that if I didn't attend, misbehaved or was thrown off this course. For ANY reason, then my benefits would be stopped.

After a week I was called into the training centre, manager's office.  And he asked me to leave the centre and course.

I asked him for his reasons.  I turned up every day on time, I took part in all the activities and as far as i could see I hadn't done anything wrong.  

His eventual reply after a lot of hesitation was:

1.  I didn't fit in with the rest of the group.

2.  It was obvious I didn't belong here.

3.  The course trainers are terrified of me and just want me gone.

4.  And a supermarket would not employ me in a million years.    So there's no point in me being there.

5.  Just LEAVE!

So it was back to the job centre.   Where my job advisors reaction was, "I just give up!"

My sister's opinion in 2016 was that with an official autism diagnosis this would not happen and I would have been protected by disability discrimination legislation.

No real problems at work.  My colleagues know, too, and are mostly supportive.  But then, I work with a pretty mixed bunch of people, including a gay man who's suffered horrible discrimination in his past.  On the whole, they're all tolerant of difference.  Not the same in a lot of workplaces, unfortunately.  But even if I was having a negative experience, I'd still want the diagnosis.  I was self-diagnosed for a time - but the uncertainty was always there.  I wanted the validation.  Scoring high on the AQ test and knowing that you have certain behaviours and issues is one thing.  But - for me, anyway -  having it all formally and professionally recognised and validated was absolutely necessary.  Maybe, though, that's partly connected to my autistic need for order and proper understanding.

We know who we are now, or we are getting there. x

Thank you for taking the time to write a reply, I agree with your thoughts about the validation, I said to the doctor that I know there is something not quite typical about me and have been searching for what it is, I need something to show other people and say ‘look you have a go at me and want me to behave in your way but I can’t and here’s why!’ I’m not looking for anything else, although beinag covered by the disability discrimination would have been helpful in my last two jobs!) 

How has it been at work for you since formal diagnosis? 

Thank you again for sharing your experience, I appreciate it. 

Identification  = connection... ASD all over x

Yes x 

Yes, I have a thirteen old son.....and I know that being ND rather than NT means that I can offer a different perspective....but not a NT one....I encourage friends, sleep overs etc....and try to step back a little x

Hi Danny, I've been referred and am waiting, who knows how long for.  I feel that I need the official stamp for protection in the future on an official level, not to confirm anything to myself, I know. Like others I am fearful of finally getting to the assessment and not getting a diagnosis but I think I would seek a second opinion. Dr Luke Beardon's book about autism in adults is well worth a read and he advocates that we should be allowed to identify ourselves in the same way as the lbgt community, a notion that had already occurred to me whilst watching the recent gay rights programming on tv.

He also refutes the term diagnosis, suggesting identification instead.

Thank you all for your input, some confirm what my thoughts and feelings were. 

The validation by a professional to say that it’s a real thing I have is important for me. I want to prove to my estranged parents and family that I exist and have something significant. It’s important for me to get some comfort from knowing I’m not crazy or a failure (in work and friendships). Also, how having Aspie’s would affect my eldest daughter, she’s having issues which are confusing her and causing anxiety, I’m worried that I may have passed on the genes to her, if I have then maybe she can get some support and understanding.

does anyone have concerns about their children and Aspie’s?

I would say yes as you've effectively been put at a huge disadvantage in being made to wait, because of your ASD and anxiety. Surely this is one of the times that your official diagnosis should work to help you get a foot in the door.

Hello Danny.  I'm 60 and got my diagnosis a few years ago, in my 50s.  I wanted a diagnosis for personal reasons.  I wanted proper confirmation, on paper, by a professional, that I had a condition.  I'd had enough of going through my life buffeted from pillar to post by mental health people, not understanding what was wrong with me, not knowing why I had difficulties in so many areas of my life.  The diagnosis, when it came, was a 'Eureka' moment for me.  I feel so much better for having it.  It's like I've now got all the answers, and I can hold this thing up to the world and say 'Look!  Here's proof that I'm not crazy!'

I told my manager about it at work, and she was unfazed.  She just wanted a letter confirming it, to go on my file.  But she also said 'If you need anything, just ask.'  I suppose that makes me lucky.  As for other help... there isn't much out there for someone my age.  But it doesn't bother me, really.  That piece of paper is, for me, therapy enough.

I'd always say, to anyone who asks me, go for it.  Why not?  What is there to lose?  But really, it's up to you and how you feel.  Many people choose to stay self-diagnosed, which is fair enough.  But for me, the diagnosis has been priceless.  Good luck with whatever you decide to do.

In fact I tried to appear 'normal' at my latest interview, last week.   And I failed miserably.  I froze when they asked me what I knew about the company and why I wanted to work for them.  I'm very poor at being enthusiastic and giving false praise.  The four hour  wait for the actual interview also drained me mentally.

The recruitment agency invited all of us for 10am.  I was number 11 out of 12 candidates to be interviewed.  And my turn came at 2:10pm.

The big question is should I admit to having autistic traits and ask for special treatment.