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Not offered assessment for personalised plan

Aven

Hello!!
I was reading through some of the NAS pages for after diagnosis, and one of them (this one: https://www.autism.org.uk/advice-and-guidance/diagnosis/after-diagnosis/formal-support-following-an-autism-diagnosis) says that everyone diagnosed with autism should be offered a personalised plan? Am I reading that correctly? If so, I was never offered this...

I have level 1 autism & no learning disability, so I'm not sure if maybe the personalised plan is just for those who need more support for their autism?
Though I do feel like I would find a bit of help very useful.. Like maybe a therapist or someone to just talk to about what im struggling with and be like "Is this an autism thing?", that would be very helpful to me, since I have *really* been struggling to know where to go for support and knowing what support I can get. (All the online things that talk about support are so vague! Like how places should provide "reasonable adjustments".. i dont know what that means for me in practice Sweat smile)

Anyone here know if I am eligible for this personalised plan and whether I might benefit from getting one? And if so, how I can go about getting it?

Thanks!

  • Dear Aven,

    From my understanding NICE guidelines are recommendations for health services rather than direct rules. However, I think that you could raise that a personalised plan may help you access support. . 

    I thought I could do some signposting that may be beneficial to take a look at: 

    Best wishes,

    Olivia Mod

  • Perhaps your assessment clinic could give you information about available support? Although support should be offered, it isn’t  always in practice. If you were given a written assessment report detailing your challenges and strengths, it may have included some information which could be considered  ‘support’,

    I’ve copied these NICE guidelines from the NAS webpage. 

    According to NICE guidelines, a personalised plan should cover: 

    • any support that the autistic person and their family and carers need following the diagnosis 
    • the most appropriate support in education, employment or housing 
    • action to address the triggers of distressed behaviour 
    • any additional support for identified co-occurring conditions, for example ADHD or Learning Disability

    Your need for a therapist to talk things over would be a common need for many people and that could come under the first bullet point in the NICE guidelines. If your assessment clinic can’t help you, perhaps your GP could refer you to a counsellor who would have knowledge of autism or be autistic themselves.  

    Reasonable adjustment in say education could be something like your college allowing you extra time to complete coursework, extra breaks, the loan of software. For reasonable adjustments in employment, you could ask your employer directly for support, e.g., availability of a quiet space, change of lighting, lower background music. It would usually be something that doesn’t cost your employer an ‘unreasonable’ amount of money and would ultimately benefit you both. ‘Reasonable’ is vague — there isn’t an exhaustive list of things.

    Following diagnosis, I was given a follow up referral to the NHS Adult Autism Clinic at my local hospital.

    The hospital gave me an information pack, a letter stating I had been diagnosed with autism and what this meant regarding my challenges should I wish to claim benefits, a book on DBT for Autism and referral to an online course on autism with the Recovery College. I was also told that I can contact them about my needs in the future if required. I haven’t signed up for the course yet.

    From other people’s posts, it sounds like follow up support is not widely available in all areas, so I was fortunate.

    I hope you get what you need.

  • in reply to TheCatWoman

    Sounds about right for the UK government; massively inconsistent and with people confidently telling you the wrong info.
    Sorry that was your experience Disappointed 

  • I've no idea, I've never had one either, I was diagnosed before all the modern diagnostic stuff came out, way back in 2012, I was just told I was autistic, or aspergers as it was then and told that as I'd managed for the previous 50 years, I could keep on managing. There is what calls itself a support group who told me that as I wasn't offered any support at the time I couldn't get any now.

    I think it's a postcode lottery as to what you get and it's all down to what your local authority provide, if anything.