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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

  • 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! 

  • 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")

  • in reply to Bunny

    Ah I see, thanks Bunny, I didn’t read that yet but will check it out.

  • in reply to Bunny

    Ok ambiguous use of words.

    I was suggesting if it was used, my understanding is it should be part of a process, so it is one piece of information to help build a picture.

  • in reply to Stuart333
    Stuart333 said:
    ADOS-2 should be part of the assessment process.

    There's no requirement for every adult autism assessment to include use of the ADOS-2.

    Per NICE guidelines, it's one of several formal tools that assessors can consider using to help with more complex adult diagnoses and assessments.

  • in reply to Tonyelk142

    ADOS-2 should be part of the assessment process. It is done by a behavioural expert. Module 4 is the bit for adults.

    For info I got 15, but it is not a competition. On the various assessment measures you only need to get over the the threshold in order to get a diagnosis.

    This measure on its own does not give a level. 

    The different measures are listed in the DSM-5 or ICD-11. They are quite similar. You don't need to meet everything, but there are minimum requirements to get a positive assessment 

    The ICD-11 does not have levels, the DSM-5 does but they may not be used in the UK as support needs vary and should be tailored to the individual.

    From the internet:

    The ADOS-2, or Autism Diagnostic Observation Schedule, Second Edition, is a standardized assessment tool used to evaluate and diagnose autism spectrum disorder (ASD) in individuals across different ages, developmental levels, and language skills. It is a semi-structured assessment that involves a clinician observing and interacting with the individual through play or interview, depending on their age and communication abilities. 
    The ADOS-2 is not a stand-alone diagnostic tool and should be used in conjunction with other clinical evaluations. 
Reply
  • in reply to Tonyelk142

    ADOS-2 should be part of the assessment process. It is done by a behavioural expert. Module 4 is the bit for adults.

    For info I got 15, but it is not a competition. On the various assessment measures you only need to get over the the threshold in order to get a diagnosis.

    This measure on its own does not give a level. 

    The different measures are listed in the DSM-5 or ICD-11. They are quite similar. You don't need to meet everything, but there are minimum requirements to get a positive assessment 

    The ICD-11 does not have levels, the DSM-5 does but they may not be used in the UK as support needs vary and should be tailored to the individual.

    From the internet:

    The ADOS-2, or Autism Diagnostic Observation Schedule, Second Edition, is a standardized assessment tool used to evaluate and diagnose autism spectrum disorder (ASD) in individuals across different ages, developmental levels, and language skills. It is a semi-structured assessment that involves a clinician observing and interacting with the individual through play or interview, depending on their age and communication abilities. 
    The ADOS-2 is not a stand-alone diagnostic tool and should be used in conjunction with other clinical evaluations. 
Children