My thoughts on “mild” autism

During my autism assessment, the psychiatrist said that although my autism affects many aspects of my life, I was still able to communicate to her well and therefore only had it “mild”. I understand that I have low support needs and that other autistic people have different or more extreme struggles and need more support, but I was masking a lot in the assessment in order to answer the questions as clearly as possible, which completely exhausted me and impacted how I felt over the next couple of days. As Keedie said in the TV show “A kind of spark”, her autism only seems mild because ‘we make it so, at a great personal cost’. Autism has a huge impact on my life, even if no one else can see it, and especially if I’m purposefully changing my behaviour to fit in or adapt to other people. Just because it seems mild to you doesn’t mean it actually is to me. I feel like this is why the terms “high functioning” and “low functioning” are being used less in favour of “support needs” which I feel is more accurate and less diminishing of autistic people’s struggles. I’d be interested to know other people’s opinions too as I know some people don’t mind the word “mild”!

Parents
  • Where I live it doesn't seem to matter what level of autism you have when you go for post support assessment. I live in the UK and it seems to matter is whether you have a learning disability and that will determine what post support you get. If you don't have a learning disability don't expect to have significant support it seems. I certainly don't wish for my disorder to be more severe as with several level 2 levels it is already a struggle for me to manage as is. I received OT support which I found helpful. I had an assessment and got a letter back informing me my options wouldn't be many in terms of support as I don't have a learning disability and there was no mention of levels in the letter. I had carers come in for a while, but I was paying and although they was nice, they wasn't experts in my condition or anything. The financial assessment is based on income and I was paying out of pocket for mine. Don't over glamorise this so called support as well. The situation for many who have support needs is they may not be getting it and be trying to keep themselves going with whatever level they have.

  • My borough used to have a joint autism and learning support service, but just ended up refusing the autistics. It  was so severe the criteria.

    I cut a lot of the eligibity out on the listed criteria.

    Eligibity

    Has a disability that started before adulthood (18 yrs) with a lasting effect on their development.

        • Where the LD diagnosis is unclear, further screening (‘Eligibility Assessment’) will be undertaken.

        Non-eligble​

        • Learning difficulty (e.g. Dyslexia, ADHD, Dyspraxia) or Neurodevelopmental Disorder (e.g. Autism) alone (i.e. without diagnosis of Learning Disability)
        • People with high functioning Asperger’s syndrome or high functioning Autism whose cognitive abilities are in the average range or above.

    I am very glad now they are seperate servies  Autism and LD. They still don't seem to be offering that much post support and I was surprised I had to pay based on the level of savings I had.

    Today, I see a consultant for a another condition. May be asking them to speak to them is best shot now. I thiink borough's may vary with what support they offer.

    • Assessment and diagnosis, if you are referred to us by your GP.   
    • Support to mental health professionals working with you.  
    • Post-diagnostic support, including psychoeducation, advice regarding employment and benefits support, problem-solving and signposting once our post-diagnostic service commences and liaison with other support agencies, if need be.
    • Pre-diagnostic support for clients who are on our waiting list to signpost for help while waiting for an assessment.
Reply
  • My borough used to have a joint autism and learning support service, but just ended up refusing the autistics. It  was so severe the criteria.

    I cut a lot of the eligibity out on the listed criteria.

    Eligibity

    Has a disability that started before adulthood (18 yrs) with a lasting effect on their development.

        • Where the LD diagnosis is unclear, further screening (‘Eligibility Assessment’) will be undertaken.

        Non-eligble​

        • Learning difficulty (e.g. Dyslexia, ADHD, Dyspraxia) or Neurodevelopmental Disorder (e.g. Autism) alone (i.e. without diagnosis of Learning Disability)
        • People with high functioning Asperger’s syndrome or high functioning Autism whose cognitive abilities are in the average range or above.

    I am very glad now they are seperate servies  Autism and LD. They still don't seem to be offering that much post support and I was surprised I had to pay based on the level of savings I had.

    Today, I see a consultant for a another condition. May be asking them to speak to them is best shot now. I thiink borough's may vary with what support they offer.

    • Assessment and diagnosis, if you are referred to us by your GP.   
    • Support to mental health professionals working with you.  
    • Post-diagnostic support, including psychoeducation, advice regarding employment and benefits support, problem-solving and signposting once our post-diagnostic service commences and liaison with other support agencies, if need be.
    • Pre-diagnostic support for clients who are on our waiting list to signpost for help while waiting for an assessment.
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