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.

  • 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.

  • My response echoes Blueray and Starbuck. Im in my 50’s and was diagnosed just over a year ago. So I felt the same as you but with another 20 years of misunderstandings on top of that. My expectations and family reactions are the same as mentioned.. I hoped it would help but it’s ignored. I do internally feel at last I have reasons for the way I am and that is good but there is a lot of confusion, anger, sadness etc etc of the what if’s which isn’t really helpful. It does take time to adjust and others on old posts have mentioned 1,2 or more years to find their way after diagnosis. I agree that more post diagnosis support would be helpful ( I didn’t have any). I do find myself saying to myself now “ ah *** that’s why ***” is the case for me or give myself some slack and space to recover from things and I’m learning about what sort of things I need that for ( sometimes get cross with myself for needing it though). I have a number of health issues and burnout more frequently the older I get so I have to try hard not to compare myself to others or to the dream I had of what I would have by now and don’t. The difference I suppose is the peace the affirmation brings between the “why ?” Stage and “now I know “ stage but then you have to realign yourself in your world with the new knowledge and the fact that it’s never going to go away but that others have found ways to make their lives work for them and others have found peace and happiness so there has to be chance of that for us too. 

  • Hi Patch,

    I was diagnosed ASD 1 last week. I'm 52, so am experiencing similar post diagnosis feelings.

    It's a slight roller-coaster, but hang on and you'll be fine.

    I doubt the psychologist told you you are inept at life:

    I also doubt undiagnosed ASD is the sole reason for every less enjoyable part of your life.

    It's very common to hold a new diagnosis responsible for absolutely everything, but relax and it'll pass.

    People with ASD simply see things differently from others....Very differently to be honest.

    To help myself, I joined this place post diagnosis, I told my partner, told my brother, told a few family friends ....that's about it. 

    I was a bit disappointed in most reactions - Most of them didn't really have anything constructive to offer.

    In this forum, I have found people with some similarities: This provided some reinforcement that I'm not the only one going through this.

    Also, I noticed the amount of people who are upset or depressed is much greater than I had expected.

    The comorbidity of ASD and depression is well documented, but I believe we have more to celebrate than to blame.

    I have come across a number of people with ASD recently that make me simply chuffed to to be in this ideosyncratic, quirky and special group.

    My advice to you is to seek out people with a similar diagnosis to your own.

    With today's technology, it's not difficult.

    You'll find there are lots of us around and secondly may find a mentor, a medical professional or other individual who'll show you people with ASD flourish when together.

    "Birds of a feather flock together" kinda thing.

    Finally, I now distance myself from mainstream, uninformed opinions and behaviours about ASD.

    Consider this:

    Ask 100 random people right now if they think the most agile bipedal carnivore was a carcharodontosaurus saharicus or a tyrannosaurus rex.

    96 would of them would most likely stare at you puzzled : Maybe 4 might say "Errr....T Rex?", out of politeness.

    You ask 3 people who share your diagnosis and your special interest and you'll have a great conversation, great time and see your future in a much better light.

    Enough said.