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Feeling misunderstood

Tonyelk142

Hi everyone - I’ve just joined the community having been recently diagnosed with autism at the age of 55. (I’m male btw and never posted on a blog before so apologies if this is all a bit disorganised!)

I’m still trying to make sense of my diagnosis. The main element I’m hung up on is the 12 score which I think means my autism is mild / high functioning but that’s not really been explained to me.

Now that I’ve had my diagnosis all my past experiences do seem to make more sense but I guess I still feel misunderstood - it seems no-one really wants to hear how I’m feeling or is showing me much empathy for what, after all, is a pretty significant life event.  I don’t want a shoulder to cry on as such but would love to know of support groups (either local or online) that would give me a chance to share my thoughts and provide some practical tips for living with this level of autism..

thank you in advance for all your support 

  • in reply to Autismman

    There is no "12" score - my first reply below explains what I believe  is referring to (ie "Level 2" / "L2" / "l2")

  • Hello Tonyelk142, do you know what diagnostic criteria was used? I was assessed using the DSM-5 so didn’t not have any involvement with the 12 score. I was given the diagnosis of ASD Level 1 which would have been possibly Asperger’s or “high functioning” although I don’t function highly at all! 

  • 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

    A common recommendation in autism diagnosis reports is for your GP to arrange therapy. If you prefer, depending on where you are in the UK, you may instead be able to self refer for talking therapy on the NHS.

    Before having this, you might find it helpful to borrow or buy this book. It discusses 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. In my case I chose to have counselling, led by someone experienced in helping neurodivergent clients:

    The Autistic Survival Guide to Therapy

    This book also taught me some important principles and enabled me to make some immediate, helpful changes - perhaps you might find it useful, too:

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

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

    There are many late-diagnosed people here, so you're in good company. Slight smile

    Tonyelk142 said:
    The main element I’m hung up on is the 12 score which I think means my autism is mild / high functioning but that’s not really been explained to me.

    There is no "12" score. I suspect you're referring to "Level 2", which can also be abbreviated and written as "L2" or "l2".

    A numeric severity level is stated when an autism diagnosis has been made following the DSM 5 TR diagnostic manual. (This is a US-based manual, but is also used in various other countries, including by some clinicians in the UK. The other main manual is the ICD, which is used within the NHS. Whilst the ICD's diagnostic criteria are closely similar the DSM's, its approach doesn't involve assigning a numeric level). More information:

    NAS - Criteria and tools used in an autism assessment

    Under the DSM's approach, one of the following levels will be assigned - these are intended to help identify the level of support that people need:

    • Level 1 - Requiring support
    • Level 2 - Requiring substantial support (which I suspect you're referring to, as mentioned above)
    • Level 3 - Requiring very substantial support

    Very intentionally, there is no reference to "functioning" levels or to such terms as "mild autism" - use of descriptions like these is now widely considered to be outdated and unhelpful - for example:

    Psychiatry UK - Higher or Lower? Why using functional labels to describe autism is problematic

    Similarly, neither of the latest editions of the diagnostic manuals includes "Asperger Syndrome". People who might previously have been diagnosed with this would now typically be included, in the DSM 5, under Level 1 and are instead diagnosed with Autism Spectrum Disorder, along with those at levels 2 and 3.

    Tonyelk142 said:
    would love to know of support groups (either local or online)

    This forum is a great place to start! Slight smile

    You might be able to find some local support groups via the the NAS's directory, or through a local NAS branch:

    NAS - Autism Services Directory

    NAS - Branches

    You might be able to find some local groups that fit with your interests and hobbies by searching on Facebook and/or Google.