Beginning the road to diagnosis

Hi everyone,

I'm a 39 year old male who is currently going through some private therapy and counselling. For a long time I felt that I may be on the spectrum in some way, and had privately shared this with my partner - but for many different reasons I never looked into this further.

My therapist actually has Asperger's and after a few sessions I decided to bring up some of my concerns and fears. When I mentioned it, he immediately said to me that he had started to question the possibility with me because of our communications. He has encouraged me to begin the process of looking at getting a formal assessment, and potential diagnosis.

I should clarify, my therapist has emphasized he is not able to provide formal diagnosis or conclusions. However I asked him to share with me some of his personal experiences and our similarities are uncanny.i didn't know at the beginning, but he also has a lot of experience helping an autism charity - so while not binding, I sense his advice and suggestions are valid, probably needed and in many ways could be a God send.

I have struggled with a lot of things since I was in primary school, and never really fitted in nor fully been able to make sense of the world.

Over the last few weeks I have been reading a lot about autism, autistic traits (and I seem to tick a lot of boxes - which I think I have known for a long time but never done anything about it) and watched numerous documentaries. It has been very helpful and insightful, but I also feel quite frustrated that I have lived in silence for so long and a bit scared about potentially being diagnosed. I have in many ways always kept a front up around people and never really let people see the real me.

To the point over the last few weeks I have even questioned what really is the real me?

In many ways in private I feel my life has always been a bit of a mess, and I have both anxiety and depression. However I have worked for myself for a number of years (small scale, nothing major) and I am starting to sense that this has allowed me to mask / hide a lot of my internal characteristics from people. Whenever I had regular jobs in the past I always struggled when working with people, always feeling misunderstood, disconnected and things have never been easy - especially when I feel I am not in control of situations...

Initially, when I first (seriously) considered this a few weeks ago I felt a sense of liberation, but when I realised the state of the NHS and how long things could take with that route I have resigned myself to trying to find a private (assessment) solution. But financially it is a bit stressful! I also feel quite frustrated with the world (or my world anyway...).

I think more than anything I am simply looking for a sense of validation about my life experiences to date and hopefully a better understanding of myself and (hopefully) some better coping mechanisms and strategies to improve and simplify my life a bit...

I appreciate I have not been formally diagnosed at this stage, so I hope it's OK to post and share here - if anyone has any thoughts or suggestions I would be grateful to hear from you.

Thanks!

Parents
  • I've literally just finished replying to someone else who is in the same position.  Your story is very familiar.  Even in the few short days I've been posting in this place I've read versions of it countless times - and I must have read it hundreds of times over the years in other places before that. 

    I've previously suggested it is akin to having a Eureka moment.  Something clicks, and perhaps for you it was your therapy sessions with someone who appears to have a similar mindset.  

    I would always encourage anyone to go and get a formal diagnosis.  After all, the mere fact they are writing about their experience would indicate that there are issues unresolved, and some validation would be of benefit.   However, I do believe that you intrinsically know yourself best - and if you believe you are autistic then likely that is the case, assessment or not. 

    There is an online test you could take, while you wait, known as the Autism Spectrum Quotient.  This measures autistic traits and gives an indication, not an evaluation.  It is self-administered. 

    Here's the link to the test:   https://embrace-autism.com/autism-spectrum-quotient/

    As you suggest, there are issues with the NHS in terms of the waiting lists, but I strongly believe we are best supporting its future by using it, rather than encouraging the private sector.  That is my personal standpoint of course.  It is certainly the case that waiting lists are long, and you do have the right to choose another provider (which sometimes is a non-NHS service) but my opinion persists - more so because the NHS would then be funding that private assessment.  However, that again is my opinion. 

    Similarly to the last post I commented on, you make the point that you've had difficulty in connecting with those you work with, leading to masking and coping strategies.  One of the major benefits of having a formal diagnosis is that you could - in theory - wear that diagnosis - and say, politely or otherwise, that this is how you are, and others can like it or lump it, as the saying goes.  That feeling that you need to excuse yourself for the sake of social niceties doesn't need to be there anymore.  

    I wish you good luck on your journey

  • Thank you so much for such a detailed and thoughtful reply! It is gratefully appreciated.

    Your sense about believing you are autistic and probably being so is pretty helpful!

    In many ways I agree about tye NHS, I am just not sure I can wait for 2 years to get a better understanding - I have been through a lot in the last couple or years, including unfortunately being extremely unwell with Crohn’s and Diverticulitis. Which contributed to me starting the therapy...

    If you have any suggestions on NHS pathways that would be helpful (I live in London).

    I have taken several of the online tests recently, and last year, and they all seem to indicate autism or autistic traits...

    Cheers overwhelmed! Hope you ain't actually too overwhelmed :) (if you like poetry I posted a second post just after this one with a poem I wrote a couple of weeks ago about internal struggles)

  • Don't read too much into the username.  I could just as easily have picked 'underwhelmed' and justified it.  In fact, I am thinking of changing it, now I mention it !     I'll check the poetry out.  

    Personally I'd go see your GP and ask for a referral.  The waiting list may not be as bad as all that in your area, and whether I like it or not, efforts are being made to reduce waiting lists by involving the private sector to triage people at various stages of the process.  And that's even before right-to-choose kicks in.  

    The NHS has five different ICB's in London alone (Integrated Care Board's) who are responsible for the planning of health services within their areas.  Each has different priorities and criteria's.   However, the benefit of living in London is that you are never far from an alternative NHS provider under right-to-choose - and I say that with tongue in cheek. 

    The Autism Spectrum Quotient test was first devised in 2001.  I guess you could say that it has stood the test of time, and whatever score you get on that can be taken as a rough indication that you are barking up the right tree, so to speak.  Perhaps with a +/- 5 margin of error factor.   

Reply
  • Don't read too much into the username.  I could just as easily have picked 'underwhelmed' and justified it.  In fact, I am thinking of changing it, now I mention it !     I'll check the poetry out.  

    Personally I'd go see your GP and ask for a referral.  The waiting list may not be as bad as all that in your area, and whether I like it or not, efforts are being made to reduce waiting lists by involving the private sector to triage people at various stages of the process.  And that's even before right-to-choose kicks in.  

    The NHS has five different ICB's in London alone (Integrated Care Board's) who are responsible for the planning of health services within their areas.  Each has different priorities and criteria's.   However, the benefit of living in London is that you are never far from an alternative NHS provider under right-to-choose - and I say that with tongue in cheek. 

    The Autism Spectrum Quotient test was first devised in 2001.  I guess you could say that it has stood the test of time, and whatever score you get on that can be taken as a rough indication that you are barking up the right tree, so to speak.  Perhaps with a +/- 5 margin of error factor.   

Children