Dealing with Diagnosis

This week I finally went for assessment and the results are in. It's a yes.

I thought I'd be happy about it but now I'm not so sure. It's really positive that I finally make sense and at 27 that's a huge relief. It also really sucks to have somebody else tell you how inept you are at life and to have to explain the job losses, uni drop outs, relationship breakdowns and all the other negatives that inevitably come from nearly three decades of undiagnosed ASD. I thought I'd scrape through and be told something along the lines of 'mild difficulties,' but to hear 'obviously autistic' was not what I expected at all.

I'm wondering how everybody else reacted to diagnosis? Was it what you expected, and did you do anything to help you process the result? Thank you in advance.

Parents
  • Just coming to terms with it. Was diagnosed end of October. The psychiatrist diagnosed me (without saying) at the first meeting then within 2 hours at the second. Was happy to finally have the answers but the reality is sinking in now. My wellbeing officer said I must take some time to come to terms with the diagnosis. I feel like nobody knows what to do with me. This has been my life long experience and I thought the diagnosis would change all that and it has to some degree,  the wellbeing officer is fantastic but she feels a bit out of her depth although she did take charge of the meeting at the end and is going to give me ongoing weekly support. I knew before the assessment that I was autistic but until I got the diagnosis, I guess I didn’t realise the impact of it. It’s been a roller coaster since diagnosis. I thought it would give my family answers for my behaviour etc but they don’t want to know and after yesterday’s episode, it seems I’m still the scape goat. I guess it’s early days. 

  • This sounds so familiar and I have just posted a similar thread here - http://community.autism.org.uk/f/adults-on-the-autistic-spectrum/11203/post-diagnosis

    As the thread said, I am finding it difficult post-diagnosis and like BlueRay has said, no one really knows what to do and my family are not really interested either.

    I guess it is traumatic finally coming to terms with what the life-long struggles have been about and really, more support needs to be made available for going through that phase of acceptance.  I know a lot of people on the forums are happy about their diagnosis and as much as I wouldn't change my own diagnosis, I am also looking forward to when I can also reach the same level of acceptance and happiness, so I can move on with my life.

  • I should have checked first for a similar post, yours words it brilliantly. I've asked myself a similar question, is this me or is this ASD? Is there a difference? I don't know how you learn to tell the difference between when to rest or when to push yourself. In your year since diagnosis (depending how old your post is) have you had any support on how to deal with it?

  • Oh no I was sorry to read about the difficulties with shutdown / meltdown at the moment, I hope that you can find the cause of those and get the support you need. Completely agree that the post-diagnosis part needs to be handled much better.

    That's it, it's like finally having permission to be different and it is helpful to know we can give ourselves extra time to rest and not be guilty about it. At least that's the theory, I haven't quite managed to feel okay about 'lazy days' just yet, but that will change with a bit of time (I hope).

  •  don't worry about the duplicate posts, if anything it shows how much of an issue this is that should probably be addressed better.

    I was going through some 'light' counselling sessions prior to my diagnosis that continued two weeks after my diagnosis.  By 'light' I mean they were just telling me to manage my sleep better and eat healthy, stop worrying etc.  All stuff we have all read and heard a hundred times and probably practice well on a daily basis.  So I didn't find that helpful.

    Other than that I have had no help whatsoever and I am currently working my my GP for a referral to a specialist as I have been experiencing numerous shutdowns and sensory sensitivity which is now impacting on my employment.  As I have stated before, I don't regret the diagnosis as it has provided answers which I needed, but the whole post-diagnosis phase does need to be handled better for those going through it.  Sending you on your way to deal with it and get on with your life, isn't always practical or even possible for some.  I received my diagnosis in March this year, so just over 9 months a go.  My main aims are to get to the bottom of my shutdowns and sensitivities to try and understand/manage them better, rule out other health problems and then help my employer and family/partner to understand me better.  My partner is more on board, but my family are still in denial or just not interested.  I don't want to keep going on about it, but it would be nice to just have a better understanding between us as we haven't always seen eye to eye and I thought this might break the ice on how we can sometimes be on different wavelengths.

    I think it will get easier and we are not any different as a result of the diagnosis.  It's just our perception of ourselves that changes and understanding that we don't have to try so hard all the time to be like everyone else.  That's the key bit I am struggling with as everyone expects me to continue working really hard and fit in, which is OK up to a point, but is very exhausting and not healthy long-term as I am finding out first hand.

Reply
  •  don't worry about the duplicate posts, if anything it shows how much of an issue this is that should probably be addressed better.

    I was going through some 'light' counselling sessions prior to my diagnosis that continued two weeks after my diagnosis.  By 'light' I mean they were just telling me to manage my sleep better and eat healthy, stop worrying etc.  All stuff we have all read and heard a hundred times and probably practice well on a daily basis.  So I didn't find that helpful.

    Other than that I have had no help whatsoever and I am currently working my my GP for a referral to a specialist as I have been experiencing numerous shutdowns and sensory sensitivity which is now impacting on my employment.  As I have stated before, I don't regret the diagnosis as it has provided answers which I needed, but the whole post-diagnosis phase does need to be handled better for those going through it.  Sending you on your way to deal with it and get on with your life, isn't always practical or even possible for some.  I received my diagnosis in March this year, so just over 9 months a go.  My main aims are to get to the bottom of my shutdowns and sensitivities to try and understand/manage them better, rule out other health problems and then help my employer and family/partner to understand me better.  My partner is more on board, but my family are still in denial or just not interested.  I don't want to keep going on about it, but it would be nice to just have a better understanding between us as we haven't always seen eye to eye and I thought this might break the ice on how we can sometimes be on different wavelengths.

    I think it will get easier and we are not any different as a result of the diagnosis.  It's just our perception of ourselves that changes and understanding that we don't have to try so hard all the time to be like everyone else.  That's the key bit I am struggling with as everyone expects me to continue working really hard and fit in, which is OK up to a point, but is very exhausting and not healthy long-term as I am finding out first hand.

Children
  • Oh no I was sorry to read about the difficulties with shutdown / meltdown at the moment, I hope that you can find the cause of those and get the support you need. Completely agree that the post-diagnosis part needs to be handled much better.

    That's it, it's like finally having permission to be different and it is helpful to know we can give ourselves extra time to rest and not be guilty about it. At least that's the theory, I haven't quite managed to feel okay about 'lazy days' just yet, but that will change with a bit of time (I hope).