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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 

Parents

  • 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.

  • in reply to Bunny

    Thank you Bunny for your advice and tips - I’ll certainly try to digest the links and details you’ve sent.  I do have a therapist that I’d been seeing before my diagnosis but what with it being summer holiday season we’ve not had a chance to catch up yet.  Slight smile

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