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Processing diagnosis

Tamarinda

I was given my diagnosis over the phone about 3 weeks ago. I still haven't received the full report. My first feeling was relief, then I did a lot of processing of the past and felt some grief over various things. Then I started thinking about how to make more accommodations in my life.

Since then things have gone downhill. My mental health has been extremely bad to the extent that I feel so depressed and wake up crying every day. I'm unable to cope with daily life.

This has been made worse because I had to start back at work last week after 3 month sick leave for burnout. I couldn't afford to be off any longer because I was only getting paid SSP and I was scared of losing my job. 

Also I had a big birthday. On my actual birthday I saw family but ended up having a meltdown after they left. I had a small party with friends planned for the next week but ended up cancelling it because I realised it would be too much for me. I don't feel like I can socialise because I can't put on my usual happy face and the people in my life are more casual friends for hanging out with and doing fun things rather than close friends I can confide in. I feel isolated and alone because I can't socialise and nobody is there for me.

My husband doesn't seem to know what to say. After the diagnosis he just said that it makes no difference because I'm still the same person. I've tried to explain that it is a big thing for me to process but he just acts like I'm being melodramatic. I've asked him for support but he doesn't seem to know what to do and just say things like he'll stay out of my way because I'm obviously in a bad mood and everything he does is wrong. I feel like he just wants me to go back to who I was when I could cope better with everything.

I've been trying to get NHS support but all the GP has given me is Talking Therapies and that makes me feel worse. The therapist challenges everything I say and confuses me. I've requested to change therapists but I don't know if it will help because I don't think many are experienced in working with ND people. There don't seem to be any autism support services in my area. 

I feel like I'm losing my job, my friends and my husband and I have no capacity to stop any of it from happening. Could some of the way I feel be down to still processing my diagnosis? 

  • Hello, 

    I am sorry hear that you are in such a difficult place at the moment. 

    I received my assessment about 5 months ago. I found "knowing" I am autistic to be very different to "believing" I was autistic. What had been rather ill defined and in the shadows was now centre stage with the spotlights on.    

    I found the full assessment report was extremely helpful. It highlighted, in detail, the areas in which I am autistic, how I displayed my autism in the assessment, some very useful information, websites, books, etc. It was a very long document which I still keep reading as I gradually take on board more of the information and adjust. 

    I approach the evidence, supporting my diagnosis, very gently and do not rush. There is a lot to take in to come to terms with after 70+ years. I do know it can be overwhelming. If I had a lot of other things in my life that were very pressing I think I might just have put my assessment to one side for a while. After 5 months I am feeling much more connected to the diagnosis. 

    I send my best wishes that things become easier for you, and soon.     

  • in reply to Tamarinda
    Tamarinda said:
    How long ago was your diagnosis?

    This week. 

  • in reply to Alexa

    How long ago was your diagnosis? Even though I looked into autism a lot before diagnosis it felt like there was even more to process once it was officially confirmed. 

    I've been in touch with ACAS already over a workplace dispute. I spoke to the advisor this week and she basically told me to speak to my union so I've emailed them. I'm not at the point of trying to take my employer to a tribunal yet - I'm going to wait and see what happens with occupational health first.

  • in reply to Bunny

    It's interesting to hearth you found things hardest at that the start. Maybe things will gradually get better for me. I feel like I've got this big secret that I can't share with anyone because I don't have anyone I'm close enough to feel safe enough to tell about my diagnosis. 

    The problem with my husband is that he's not interested in learning about autism. I've tried talking to him about it and sending him links to videos and articles but he wants to act like nothing has happened. As far as he's concerned it's just a label and he says he's too busy to look into it. This is making me feel very sad and insecure about our relationship. 

    I wish there were more services to help me come to terms with everything. I will probably eventually pay for a private euro-affirming therapist but because I've ben on sick leave I don't have the money at the moment.

    Btw have you read the book you recommended and do you think it is good? 

    You said you have so much you'd like to say so if there's anything else you'd like to mention please do!

  • Virtual hugs for what you're going through. people hugging I haven't even begun the post-diagnosis processing yet as I'm too busy until later in the month to have the time and space I need. I found reviewing my past prior to diagnosis dredged stuff up I'd long buried and which is still difficult for me to deal with. That and the anxiety of approaching diagnosis left me in a state of shuttling between panic reactions and wanting to cry.

    Unlike you, I'm no longer in a long-term relationship which, like my previous relationships, I now see I lost through differences in perception. I'd guess your husband is floundering. Might it help if he read some of the guidance on this website? He'll probably need help to know how to support you, which is so difficult when it's yet another burden when you're struggling to cope, but it might bring him some relief to find ways to support you. Neurotypical couples have to adjust when one of them has a life-changing accident or illness, so it's not just a problem for us. Maybe it's easier for them because doctors/the NHS are geared up to support physical diagnoses in a way the system isn't for us.

    The NAS directory might help you find an ND therapist near you or online that might be able to help you and your husband.

    For work, the ACAS guidance about disability at work might help you and your employer. ACAS is the organisation that issues codes of practice for employers about dealing with employees' rights. Also, take at a look at the NAS guidance for work.

  • in reply to Bunny

    The double empathy theory looks promising. The work of organisations like the NAS is so important for educating everyone that it's not just our problem.

  • Hi  , I’m sorry that processing your diagnosis has been so tough on you. It’s natural to feel this way whilst you’re taking in so much, and I hope that with time and support things settle and you feel better. I’m going to signpost you to some resources below on different topics you mentioned, I hope you find them useful.

    Our website has a diagnosis hub, this includes information, practical and multimedia resources to support autistic people and their families before during and after diagnosis.

    You may like to have a look at the mental health section of our website which has useful links to information and advice about a range of mental health issues: https://www.autism.org.uk/advice-and-guidance/topics/mental-health. The following information may be of particular interest:

    As you’re interested in counselling (NHS & private), you may like to have a look at the Autism Services Directory: https://www.autism.org.uk/directory under ‘Health & Counsellors’.

    This guide produced by the National Autistic Society may be of interest. It collates suggestions on ways professionals can make mental health talking therapies better for autistic people.  

    Content note - the guide contains sections on suicide and self-harm: Good practice guide for professionals delivering therapy.

    In terms of friendships, I’m sorry you don’t feel somebdoy is there for you. Hopefully you get some support through the online community here, and you may find it useful to have a read of our guide on making friends: https://www.autism.org.uk/advice-and-guidance/family-life-and-relationships/making-friends.

    Best wishes,

    Anna Mod

  • I'm so sorry you're feeling this way. There's so much I'd like to say, but I'll try to stay as focused as I can.

    Perhaps the most important - and hopefully reassuring - thing to share is that your feelings and experience aren't unusual:

    "Lived experience sources suggest that it is common for some autistic people to experience negative feelings, poor mental health or confusing feelings, such as a loss of sense of self, after receiving their diagnosis, and that it took time and a period of reflection before they experienced the more positive feelings and outcomes listed above." 

    NAS - How will I feel after receiving an autism diagnosis

    When welcoming people here, I usually mention how my diagnosis turned out to be the start of a new journey of learning and adapting. 

    For me, by far the biggest emotional impact was at the beginning. And things have got better over time. That being said, at almost three years (rather than weeks) after my own diagnosis, I'm still processing some things from my past (including new things that keep popping up), and learning how best to accommodate myself - including through trial and error.

    My partner and I are also still working through the implications for our very long-term relationship. To help with that, we're considering having some couples counselling (led by someone with experience of supporting couples involving autistic people). Perhaps that might be worth considering? 

    One key thing (for me) that we have discussed is the double-empathy problem. It proved helpful, and might be worth sharing with your husband at this early stage:

    NAS Learn - The double empathy problem

    This book has also been helpful:

    Amazon UK - Loving Someone with Asperger's Syndrome: Understanding and Connecting with your Partner

    (The latest diagnostic manuals no longer use "Asperger's" and instead include people who'd previously have received that diagnosis under autism / Autism Spectrum Disorder).