Is diagnosis as an adult worth pursuing?

Yes, pursue it.

If you believe there is a strong possibility that you may be autistic. I would definitely say it is worth pursuing further. Even if potentially you may not be diagnosed with autism. You could be diagnosed with a different condition. It might be worth seeking professional help e.g. a GP.

In that case, your region is breaching the statutory guidance. Some CCGs will 'buy in' a diagnostic service from a nearby mental health service but 'there is a duty for each area to have an easily accessible autism diagnostic service and for people such as GPs to be aware of the pathway' (Think Autism, section 7.8).  What may have happened is that that pathway has changed, so by the time you get to the end of the waiting list, that diagnostic service has evaporated in a reorganisation and been replaced by something else.

I know people who have paid £500 or £2000 for a private diagnosis (some services quote even higher). Autistic-run groups almost always accept self-identification (which costs nothing) as valid.

I had always wanted to believe that people were basically born with the same psychology, and all differences were down to experience and culture. Now I accept that there is a healthy mix of personalities and aptitudes in human diversity, and I'm one of the 'outliers'. I'm not particularly keen on seeing that as a 'disorder'.  I think my diagnosis has helped - other people say I'm less depressed, but it's sad that has involved accepting that I can't do things I want or should, and that currently there's little support to help adults.

...and I was for exactly that reason too but I don't know if that goes for anywhere in the UK or if it was just a local agreement where I live.

Can't you be referred to a neighbouring NHS area? I was for my assessment and diagnosis because my own area has no such services either. I would be wary of a private diagnosis.  

So I have now been informed that in my region there is no assessments for adults on the NHS. Has been suggested I go private but reckon that would be too expensive. I've read many other reports, posts, blogs, etc and know that I share a lot of the same traits. Whether I am or are not Aspie I have been able to come to terms a lot more about how I feel, think, interact or don't. I think that is way more important than a label. Thank you

Nice one Rob I bet you feel relieved! Fingers crossed the wait wont be massive but bear in mind it may well be.

Hi, Well that went easier than I thought. Spoke with my GP this afternoon and she agreed to refer me for diagnosis just like that! Just need to wait on an appointment now which she did warn me will take a few months.

I self-diagnosed some 18 months before my actual diagnosis, a period during which I started identifying myself to others as being on the autism spectrum.

The biggest factor of being formally diagnosed is that it has given me a very real platform from which to start dismantling my masking/camouflage/pretending behaviours; as such I am bit by bit freely expressing my autistic behaviours in situations where before I would be subconsciously been 'normalising' my behaviours.

Also my formal diagnosis has been essential in settling a dispute at work where in the first instance my self-diagnosed autism was not accepted, and in the second instance, following formal diagnosis, my employer did not accept that my autism qualified as a disability under the Equality Act 2010 and contended that autism was not permanent.

Hi Rob,

Sounds positive that you have taken the first step! I only got my (NHS) diagnosis 10 days ago after a 14 month wait. Obviously its early days and after 52 years of pretending to be NT readjusting isnt gonna come overnight....BUT the relief is HUGE! So many peeps in their 40s 50s 60s and beyond must have just slipped thru the net, I bet since the Chris Packham BBC doco there have been a lot more people coming out of the woodwork and started looking for a diagnosis.

Do keep us updated as to how your GP meeting goes.

Hi, thanks everyone. I have made an appointment to speak with my GP next week so we will see how it goes.

Really interesting comments.  There is something in what you say that contributes to the reasons that I have not gone for a formal diagnosis.  

Firstly, the reason for the diagnosis is more about working out what impact the autism has on your life and whether that diagnosis will then help to make your life easier.  That has been a sticking point for me as I wasn't sure how a diagnosis would then contribute to making my life easier.  Though I have found being self-diagnosed means that I don't tell people about being aspie because I worry they'll tell me I'm being stupid.  So then that automatically makes life harder because I still feel that I have to pretend. 

Secondly, I think I have become so good at masking that I think I would talk my way out of a diagnosis.  There are so many aspects of life that I have just accepted to date as being difficult assuming that everyone finds them difficult or because I hadn't realised how difficult I find them.  In recent months I have started to challenge these things myself and now my husband will regularly hear me use the phrases "doesn't everyone have that problem then?" and "it's an aspie thing".  Previously I would not have said anything at all about finding something difficult or I would have glossed over something that I didn't really understand.  Though I find that I only do this with my husband and again pretend to everyone else.

The issues around medication hadn't occurred to me before as a possible benefit of diagnosis, but yes I can definitely see that would be beneficial.

I think I'm putting together a case for formal diagnosis here as I still seem to be doing a lot of pretending to other people.

Hi Rob43,

In addition to the helpful replies in this thread, you might want to have a look at the 'Diagnosis for adults' page here on the site, which outlines the process of getting a diagnosis and details some potential benefits of doing so. You can read that here - http://www.autism.org.uk/about/diagnosis/adults.aspx

Best wishes,

Ross - mod 

I have mentioned this in other posts on this site, but feel it appropriate to mention it again:

The diagnostic criteria is not to ascertain if you are autistic or not (to be put forward for diagnosis means that you almost certainly are autistic) but to ascertain the impact your autism is having on your life. Paradoxically the more support you have and the more you are helping yourself, the less likely you are to be diagnosed. I was explicitly told this at the end of my diagnosis, where my diagnosis was quantified as 'borderline' due the immense support I get from my partner.

Also I seriously understated how affected I am in my daily life by my autism, my partner (with me throughout my diagnosis assessment) often added information that demonstrated the true impact of autism on my daily life. Without her input I feel I would have talked my way out of a diagnosis through ignorance of my difficulties (that I struggle to recognise) and understatement.

Having been diagnosed has been an absolute turning point in my life; Martian Tom's above post regarding the Enigma machine is spot on!

I'm also pursuing a formal diagnosis. I know it'll take ages, but I want to do it so that I can maybe find resources that will help me manage my difficulties better.

I would say at this stage I am 90% sure that an ASD diagnosis explains my life. My wife and ageing mother are also of the opinion that ASD "is me", so whilst I could well believe that self-delusion is one possibility, what are the chances really, when close family are saying, "hey, this is you"?

I do feel acute sadness that my late father never lived long enough to hear the news. He did say he could not really understand me, and he always seemed to keep his distance. His death has left me feeling a little cheated of the possibility of a better relationship with him, and that's a bitter pill, but I am slowly accepting it.

Perhaps I may yet be able to improve my relationship with my estranged son. That would be reason enough I think, to go through the rigmarole of the formal route.

Hi,

Yes, yes, yes.  Do go ahead for a diagnosis.  I was diagnosed two years ago (I am now 55), and it has explained a lot of things and my doctor now remembers I'm autistic when filling in forms and prescribing medication.  It has revolutionised my life.  Take all your scores with you to the GP.  Mine was OK with it as it was a psychiatrist who suggested I get a diagnosis.

Margaret

In addition to Tom's excellent reply, it is probably also worth mentioning that the specialist who diagnosed me told me that if I were to ever go down the route of medication for my anxiety, I need to make sure the doctor is aware that I have an ASD diagnosis. Apparently some medications act differently/more powerfully on people like us, so the doctor should have that information prior to prescribing.

Given that you are taking anti-depressants already, a diagnosis may go some way to explaining why they don't really seem to be working for you.

From a personal viewpoint, I would say that getting a diagnosis was definitely worth it. It has explained so many things in my life .... well, all of it really! I also think it is helpful to know that you are dealing with 'anxiety arising from issues connected to autism' rather than just generalised anxiety (or simply cracking up, which is what I thought was happening to me before I knew the reason). Some strategies for managing anxiety and depression may simply not work, or not work very well, when it's autism related, so I think it's pretty important to know. 

Best of luck with whatever you decide, and I hope you find some calm in life

Rob43 said:

I think it would help me come to terms with how I often feel and provide me with a reason to give to others to explain how I am

Hi there,

That's precisely why I pursued diagnosis, having had a therapist (whom I was seeing for depression and drink problems) suggest it to me when I was 54.  I had to wait just over two years from referral to actually getting that formal piece of paper, but it was worth it.  I'm now 58.  Granted, there's hardly anything available to me now in terms of support, but my employer knows and is able to work with me positively on it.  And my whole life makes sense to me at last! 

You will need to steel yourself.  Take the evidence you have to your GP (I scored 42 on the AQ, so close to your score) and say you would like a referral.  Tell them everything - as I did (though I also had my therapist's back-up).  If they demur - persist.  You have a right to this.  It doesn't matter how old you are.  They may refer you to mental health services.  If they do, don't always expect to get a positive reception.  For me, it was a blind alley.  I had one psychiatrist tell me I couldn't be autistic because I didn't flap my hands!  Even the experts don't always know what they're talking about.  That's not to say, though, that you will necessarily fare the same.  It may work for you to try that route first.

My mental health has improved tremendously since I got my diagnosis.  It was like the Enigma machine that finally broke the code of my life, so that all the messages finally made sense.  No longer am I able to simply be dismissed as 'depressive', 'anxious', 'anti-social', 'rude', 'a loner', 'inept', etc.  I can be taken seriously now.  I have a condition that's universally recognised (if not universally understood).

Some people are content with self-diagnosis, which is fine.  You sound like me, though, and want that extra confirmation and validation.

I say... Go for it!

Best of luck,

Tom