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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? 

Parents

  • 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).

  • 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.

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