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Can't be assessed without an informant

Kool_kat

Ive waited months for an assessment. Finally had it booked for today. Explained on the call weeks ago I dont have an informant - few friends and not a great family relationship. I was told it would be fine.

The woman has just refused to do the assessment cos I dont have anyone else on the call. Said unless I can find someone who knew me as a child I can't be assessed. 

What do I do??? I provided some school reports but she said that's not enough. 

Parents

  • This is what NICE guidelines say about adult assessment:

    Comprehensive (diagnostic, needs and risks) assessment of suspected autism

    1.2.5

    A comprehensive assessment should:

    • be undertaken by professionals who are trained and competent

    • be team-based and draw on a range of professions and skills

    • where possible involve a family member, partner, carer or other informant or use documentary evidence (such as school reports) of current and past behaviour and early development

      https://www.nice.org.uk/guidance/cg142/chapter/Recommendations

    “Where possible” is the key phrase. This means that if it isn’t possible to have someone with you the assessment can still take place. 

    I had a private assessment without an informant in 2024. The Clinic assessed according to NICE guidelines and it recommended that people had someone who knew them when they were young but it recognised that not everyone will have a person, especially older adults. My GP and the NHS accepted the diagnosis because it was carried out according to NICE guidelines. (Prior to choosing a private assessor I had enquired if my GP and NHS Adult Autism Service in my area would accept a private diagnosis. I was told yes, so long as it was in accordance with NICE guidelines)

    The assessor said it would be ridiculous to deny assessment to those people without an informant, especially when the nature of autism means that some older adults wouldn’t have life long friends or people who have known them since childhood.

    In your case, if it is an NHS assessment you could complain and ask why they are not guided by NICE. If it is a private assessment you could ask the same question or choose somewhere else that adheres to the guidelines.

  • in reply to ArchaeC

    I was lucky enough to be diagnosed before the requirement for people who'd known you as a child came along. The rules do say "where possible", but this is such an ongoing complaint we see here so often, the rules are obviously not being adhered too.

    It makes so little sense for older people to be expected to provide school reports and people that hace known them sinse childhood and what about people who've grown up in care?

  • in reply to TheCatWoman

    Exactly! I think it can be ignorance on the part of the assessment clinic to deny assessments to people without informants.

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