Diagnosed at last!

Most of my life I’ve been an outcast and labelled as ‘weird’ by most people I encountered and now I’ve finally been diagnosed with Autism! It took nearly five years but I made it to the finish line in the end. I feel like I’m wasting my life away a bit though but how I feel could be down to the Autism. I don’t really do much and it must look lazy because nearly everyone I know calls me lazy. Sadly it’s my own family but then they aren’t exactly understanding or supportive. They see autism more of an excuse.

I’ve been trying harder to do more, some days I’ve gone out for a short walk but the fatigue pulls me down, other days just getting out of bed is a challenge. Most of my time is spent reading and napping. I worked for a short time between 2012– 2022 but didn’t go in much, the anxiety floored me, the fatigue became unmanageable and to be honest it feels like I never got over it. At the time it didn’t make a lot of sense. I kept asking myself why I was being affected this and I had no idea, no answers surfaced, I was very much in the dark and felt alone in what I was going through. One of the girls I worked with noticed my lack of making eye contact and the way I repeatedly clapped my fingers against my hands three times like a drum beat. She said it looked like stimming and then I looked it up, heard of autism and went for a diagnosis. It was a long haul, and at times I felt like maybe I shouldn’t have gone for a diagnosis but I finally got my diagnosis last week and now I feel a bit more at ease with myself. Looking back at how I’ve been and what I’m like now it makes a lot more sense.

Before I felt strange like I didn’t fit in with people but now I see that my group is out there just I didn’t know where to find it before. Now I know about autism I can understand myself better and look at what I’m experiencing from a different view point. I think the fatigue might be burnout but I’m not sure exactly, just a wild guess based on my research. I’m going to try and slow down and be less anxious and see if that allows me to recover.

Sorry for the lengthy message. I’m still a bit in awe about my diagnosis and the sudden eye opening it’s presented me with. It’s just nice being able to talk about it all without people telling me I’m lazy and using it as an excuse.

Q.

  • Welcome AutisticQuinn to good to have you here. You sound like you are at least on the right path now. There is a lot to take in!

  • Congratulations AutisticQuinn! I was diagnosed only last December and it was a massive relief! Other people have posted here about families not quite believing in the autism diagnosis, it’s unfortunate but sadly not uncommon. Non autistic people don’t always get the big deal about a diagnosis but we do, so enjoy the feeling and affirm yourself.

  • Hopefully your diagnosis will help you

    Although I've not heard from my GP since dropping my assessment report off to them, a month ago.  I've reached out to a local support group/charity who run online workshops and offer telephone support - think that route may be better

    So do look on autism-services-directory for a group local to you.

  • Hi AutisticQuinn welcome and congratulations on your diagnosis! You aren't weird you are absolutely normal and you are amongst friends here who understand. I hope you find all you hope for here.

  • Hi Quin, I took great pleasure in telling some people who'd blamed me for being weird that I was autistic and couldn't help it and that they just has to suck it up.

  • Welcome AutisticQuinn.

    Are you happy to share what type of things you enjoy reading?

    An extra thought; about trying to do more: we have a longer running thread "3 Good Things (Redux)":

     3 Good Things (Redux) 

    If I am feeling a bit "going too slow", I try to think of some random things I meant to do - have a go at them - then write them up on that Good Things thread.

  • I think the fatigue might be burnout but I’m not sure exactly, just a wild guess based on my research. I’m going to try and slow down and be less anxious and see if that allows me to recover.

    There's a very good NAS article here that might be of some help:

    NAS - Autistic fatigue and burnout

    There's also some great advice here from a neurodivergent author (who's also a clinician and advocate), along with a link to buy and download her workbook and toolkit if you wish. I suspect these form the basis for her book that's due for release in April. But hopefully this might help in the meantime:

    Autistic Burnout Recovery: How to Build a Recovery Plan

    I'm also a fan of this book of hers - it's the first book that I bought following my diagnosis. The content for each idea is fairly brief, but I found that helpful (vs feeling overwhelmed by an overly long / wordy book) and it introduced me to several strategies that I've found useful:

    Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

    Again, though, I'd urge you not to stress yourself by feeling the need to rush your next steps.

  • Hi Quinn - congratulations on your diagnosis and welcome to the community!

    The relief that I felt was also enormous. But don't worry if you also get some negative feelings, too. It can be common for us - especially as late-diagnosed adults - to experience emotional dysregulation, which can include working through a phase where we experience confusion and/or (backward-focused) anger, frustration, grieving and more. So please don't worry if this also happens - it's normal! :)

    The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

    NAS - How you might feel after a diagnosis

    NAS - Other advice covering post-diagnosis including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    For now, I suggest allowing plenty of time for it all to sink in. For me, and many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a conclusion, with lots of ready-made solutions for all of my various difficulties.  

    Therapy is often recommended after a diagnosis as a follow up action for your GP to arrange. You might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful, myself included:

    The Autistic Survival Guide to Therapy