Diagnostic Assessment without childhood caregivers

Hi, I had an NHS assessment last year at the age of 57. My mother is 80 and doesn’t really accept autism, she still can’t say the word. I have all my school reports but didn’t use them, they mainly just say I was quiet.
I was assessed with no parental involvement,  the section in the forms from a childhood informant were returned to them blank. my wife sat in on the end of the second session and really just verified what I had said.

My wife’s input was more to build up more of a picture of me and as support when I was told the outcome.They said they didn’t normally give the results on the day but I was an easier diagnosis and they had already decided by lunchtime.

I read your other post, you really need to appeal and ask for a further opinion. Personally I don’t think the assessor treated you fairly.

My assessor replied to me, that for her the statements of the family members in an adult assessment are insignificant because they are often distorted. Tge family members often don't remember well or just don't accept the possibility of their child/sibling being autistic. She wrote, the most important thing is to ask right questions and observe the patient herself. I collect as much documentation as I can. Now I can see, that even these documents that seemed to be irrelevant,  may actually help me.

Ok that is good to know and good they check on mental health from time to time 

Hello yes that is an idea I’d not thought of. I also had lots of medical care as a child thank you

I was diagnosed in my late 40s in 2022 and I had my father write me a letter. You  could may be ask for your medical records as you haven't mentioned that. I got mine and I found I had medical admissions and a lot of appointments as an infant. This helped as well. I got my paper notes as it was all written in hand at that time. If you have a friend they do speak to friends at well They wanted to speak to an old school friend once. 

Thank you for sharing. It’s really not a good situation and I think the system needs a re think to make the assessment easier for people considering the challenges they are facing. It’s almost like the struggles we face in daily life - being misunderstood and judged continue into the assessment which I find baffling. Wishing you all the best anyway

Thank you Amy23 that’s really helpful good to hear of your experiences as I think so many have the same worries. 

I had a very long form to fill in at the beginning when I joined the waiting list. Then just a couple of weeks ago, many more questions to answer on a form. I have the asssessment via a teams meeting and apparently it is related to ADOS assessment. I get regular messages asking me to answer a couple of questions on my current mental health. 

I'm living in Germany. Some providers (mostly those paid by insurance) won't start the process, if there is no family member to fill out the form for you. If I try on insurance,  I would have waited at least 2 years. I have some savings. I don't like travelling,  I hate shopping, I don't spend money on any entertainment so at least I spend it on myself (health care). I'm not German,  so I don't even know how would they accept translation (I would probably have to pay myself for translations). I actually have to clarify this point with this provider, but I mentioned in my first email, that im not German and my origin.

Hello,

Both my parents had passed away by the time I had my assessment. I asked my younger brother to fill out the form, with him being younger he couldn't answer some of the questions or give any details in a lot of them.

It did worry me that it didn't provide much of a picture of my early childhood from a family members point of view & i didn't have any school reports either. Nevertheless I was diagnosed as autistic at my accessment.

All the best with your accessment.

This sounds positive from the psychologist…also wishing you lots of luck. You will be OK when you’re in there talking about yourself maybe? I’m also thinking about going private as I can’t wait 2 years. So do some providers force you to have an informant? Which country are you in? It all seems so disjointed 

Love your last sentence  they do make it feel this way don’t they. Ok great I have lots of memories similar mine mainly around pattern recognition, stimming and not really playing - I preferred giving my toys tasks and ling them up  plus a million other things. It’s not a nice feeling that you feel like you have to prove yourself. Good to hear your perspective 

Aww I hope it’s not too stressful for you and wishing you all the best thanks for your reply  so do you have to provide them with a written account? I’ve not been told what to expect other than waiting list of up to two years 

I agree my parents wouldn’t have done it either. Maybe as a child but not as adult. Plus they didn’t understand their own emotions let alone mine. I mean my dad was born during WW2 and had a particular mindset. 

Agreed the system needs changing it’s a bit discriminating and makes it difficult for those struggling as it is. 

Yes, I’ve read about young people who wouldn’t be comfortable doing it with their parents involved. What an awful situation to be in. 

Thank you for this

Hi, im Awaiting my assessment and the psychologist is fine with my school reports and some other evidence, for exampleold photos. I have an email from a family member about me, how I was as a toddler, and copies of my drawings from my childhood. She wrote, she understands that many adults don't have any informant or their family members deny the possibility of them being autistic. I wish you luck. I'm myself nervous about it all.

It depends on the provider. I'm going private for few reasons, one of the reasons is lack of informant (here where im living they require a family member).

I was diagnosed having only a 90+ year old aunt living, who I would not have dreamed of disturbing just to fill out some forms, so I just said that on starting infant school I was selectively mute at school for three months and used to spin around on my own in the playground. This seemed to be enough. The assessor(s) just need an indication that you had autistic traits in early childhood. Your own recollections should be enough, it isn't a court of law requiring sworn witness statements.

I’m due my assessment interview next month, my husband is my informant but childhood stuff I just wrote what I know and remember (repetitive behaviours and habits, friendship patterns). Over a certain age I’m pretty sure if you had helpful parents they would struggle to remember some of this stuff anyway. 

I feel lucky that I was diagnosed before all this nonsense about parents and caregivers came in. My Dad wouldn't have engaged with it and therefore nor would my Mum, I'm not sure they have things like school reports anymore, why on earth would you keep them through two house moves? 

I think the system needs changing for older people, I was 50 when diagnosed, there's a lot of people who won't have anyone who remembers them from childhood. It seems a very antiquated system where they expect all families to be close and supportive of each other, for us to still have contact with our schools, mine was knocked down years ago and still have our childhood friends.

How realistic is that really?

Even for many younger people a hostile family could scupper thier chances of diagnosis and the help that could come after. I think the people who decide these diagnostic criteria should wake up and smell the coffee and actually think about how fragmented the lives of so many people are. It feels infantalising to have to have all this stuff from childhood brought up 40 odd years later as "proof", why can't we just be believed and a diagnosis made on how we are now and not how we were then, when autism was barely recognised at all? 

Hello forget_me_not_48

The journey never ends, and we are never too late to learn about ourselves - I received my diagnosis later in life, after quite the personal journey.

While I am sure that our community will have a lot to share, I would like to share some resources with you - you raise an interesting point relating to Autism and genetic based evidence:

What is autism

How will I feel after receiving an autism diagnosis

I hope that this sparks an insightful discussion.

Thanks - Mod Zac.