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.
Yes, it could be that.
OK, there is a diagnostic requirement that there is an indication that you had autism traits in early-ish childhood. There is no requirement that this has to be from someone other than yourself. At my assessment I said that I was selectively mute for three months after starting school at four and a half years old. This was enough indication - both my parents were deceased and I had one frail aunt in her 90s, who I definitely did not want to impose upon for a statement. It is a medical assessment not a criminal trial, one's own history of traits and experiences as an adult should be sufficient.
This approach - faux legalistic - seems to be more prevalent among clinical psychologists and less among psychiatrists. If possible ask to be transferred to a psychiatrist.
It could be ignorance or it could be policy, denying people an assessment like this will keep the numbers down and thats what many would like
Exactly! I think it can be ignorance on the part of the assessment clinic to deny assessments to people without informants.
I think I'd be raising a complaint with the provider. I and many others were assessed without an informant.
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?
This is what NICE guidelines say about adult assessment:
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.
Thank you for the replies. I have a good memory of my childhood and remember being called sensitive, pedantic and having total meltdowns. She said my memory may not be enough and she doesn't want to have to tell me there's not enough evidence.
In my questionnaires I gave a lot of examples from my childhood, specific examples.
Also, if you look at the criteria for a diagnosis here:
the symptoms being present in childhood is a criterion so I assume that a memory of your childhood might at least be needed (although it's only an assumption).
I wonder whether the format of the assessment is relevant.
I suspect from reading this that I was diagnosed under the 'Disco' regime:
https://www.autism.org.uk/what-we-do/diagnostic-service/the-disco
"Where possible, information concerning the person's history in infancy and childhood should be collected from an informant who has known the person from birth. However, when for an adult, there is no informant available to give an early history, the items of the schedule can be completed for current skills, deficits and untypical behaviour"
"As mentioned above sometimes no informant is available. When this is the case the clinician has to obtain as much information as possible concerning the details of current skills and pattern of behaviour of the person. This type of dimensional approach to clinical description is far more useful for prescribing how to help each person than is assigning a diagnostic category. The dimensional approach is fundamental to The DISCO in contrast to other diagnostic schedules."
The diagnostic tools for the UK are listed here:
Diagnostic tools for adults who do not have a learning disability
All this makes it extremely hard on the person being assessed, especially if you are autistic, it is hard to communicate the distress caused by being messed around to an assessor.
Absolutely.
It can mean people not pursuing a diagnosis because it's painfully difficult to do.
It seems there is a big range in the people doing the assessments and their understanding of the guidelines/what their company policies are. Some are understanding that it isn't literal or always possible, and if you can discuss things enough yourself, they are satisfied. Some seem to refuse unless you have filled out their specific form to the letter. I've never heard of requiring someone on the actual call before.
All this makes it extremely hard on the person being assessed, especially if you are autistic, it is hard to communicate the distress caused by being messed around to an assessor.
I'm very sorry Kool_kat , this must have been very upsetting, especially when they said it would be fine. I would contact the place again, and explain what happened and ask for an explaination, as you shouldn't have been told two things. I think there are places you can go, but you need the staff arranging it and the person doing it to be on the same page as to what they accept.
but I did have someone who knew me fill in a report,
Interesting.
I had zero input from another person.
I've been assessed twice and neither time had someone in the call, but I did have someone who knew me fill in a report, I've heard of people having assessment without informate from childhood, but it can make it harder to confirm if signs as a child if you don't remember your younger years and what you were like then
I am sorry to hear this and surprised.
I was assessed via the NHS by a private provider without an informant but I do have a good memory of childhood struggles which may have influenced them.
I don't know the rules around this so unfortunately I can't advise you.
All the best.
