Late Autism Assessment Issue - Is it true...

NDME

Female, 50s, diagnosed ADHD.

No living family, NO friends childhood or otherwise.

Having had the assessment recently, I have been told it will be difficult to diagnosed me without input from someone who knows me. Is this true?

I only have my daughter who I have heavily masked to my whole life, so she is (hopefully) unaware of most of my difficulties. She was able to form fill for the ADHD assessment but the social side.... she knows nothing of what goes on inside.

Will this jeopardise my assessment. Is there anything else they can/will do to make up for this, or will they just go to a default no, I don't have autism?

After a whole life of turmoil, I feel as though I'm falling at the last fence of trying to make sense of my existence.

Dendoo

I don’t have what you have but I’ve masked too for years .. I’ve obviously had to unmask them on paper. I applied for pip and with mh as I had reached stage coping with it all I had to ask for help . (Pain stuff and humongous knock on effects) . I’m doing a mandatory reconsideration at moment was short of 2 points . I’d rather my private stuff stayed private if that makes sense ? I’ve told who I had too and I’m working on coming to terms with things by getting help now . I’ve seen on good authority getting family friends etc to chirp up isn’t taking seriously cos no matter what they are going to support you anyway . Are you under mh? These will know all about masking and how your condition enables that . I hope I’ve made sense to you . Best wishes x

MsR

Critically when I was assessed they communicated with my dad. What they wanted from him really it seemed was my past history in my childhood growing up. From memory this was the most important thing. I don't think they was that interested in what I did as an adult, but what I was I like growing as autism is diagnosed from childhood. It was a like a bit of a childhood history. Your daughter cannot say what you was like then at all of course. As an adult you can speak for yourself, I tend to think you may possibly be ok without your daughter input.

Catherine21

https://forum.scope.org.uk/discussion/128094/late-autism-assessment-issue-is-it-true

II'm The same when I recieved form from assessment centre I filled form out from my side I wrote I have no one from childhood who can write about me I do still have parents but thier totally uninterested but I did read you need someone who knows you at assessments and I can relate I've masked alot with my daughter she doesn't know the half of it feel very uncomfortable laying it all out in front of her surly they should expect people don't have family friends to help

MsR

This is some information

Firstly, I was going to have a test whilst I was in hospital and that time they spoke to my mum and they asked her if I had any childhood illnesses. If you never had this you could request your childhood medical records to have a clear idea yourself.

Perhaps if anyone knows you from childhood could they perhaps write a letter on your behalf. You don't have to submit these if you don't want to use them. My dad when I did go for testing wrote a letter and he also spoke to them as well. Writing letters can help guide people and you can ask for what you want.

Actually I remember although my parents were there, my consultant in hospital also raised about speaking to an old school friend. Very involved indeed. By the time I was tested outside of hospital just speaking to my parents was ok. However, I can see now why they may like to speak to anyone who knows you well, but as an adult I think some will get away speaking for themselves. Some peopke have and been diagnosed.

NDME

They said I had to have someone, as they can't complete the assessment without it. They suggested my daughter if I don't have anyone else, but their input will be limited.

Being in my 50s, both my parents both died from Cancer when I was in my 20s. I have more or less been alone most of my life (apart from when I was married). Then, I just had that one person. That ended over 10 years ago.

NDME

Considering what the assessment is for, I would hope so, but I fear perhaps not.

That's what I wrote too. I suppose time will tell.

NDME

The problem is, when I say I don't know anyone, I REALLY mean, I don't know anyone.

My medical notes were handwritten back in the 70s. They are ineligible. I had no friends at school, I was bullied at every school and had many fights. I have not 1 connection feom any time in my life, I have ALWAYS been socially awkward so kept myself to myself, literally. The amount of times I have gone out I can count on my hands, in my whole life, and every time was hell, I just wanted to escape.

I didn't realise their could be an official reason for it. I've always known I was different but I kept it hidden like a guilty secret. I thought I was the only one.

MsR

When I finally went for my test outside of hospital I requested my childhood from my surgery. They had them still, I am born in 73 and know the handwritten note, they was not on my nornal records which were all on computer but they had these at the surgery and they were supplied for me, just the first five years of my life. The records were very helpful because my mum tried to hide about my illnesses and the records shows I had infections and hospital admissions for infections and treatment. It really helped with things in my case. My dad was fine, but my mum had a bit of issue admitting I had treatment and medically but it was front of us all.

You may not like this but if you you want to include your daughter, now be may be the time if you are going to involve her to discuss a bit more involved about your autism. Good luck.

MsR

I don't mind this, my name is not showing-you see hand written notes, for some people of the same generation it can be achived. There is no harm no in asking for yours if you want to. It went from my mum saying no illness to getting mine and let's answer the question again,

Illness yes unfortunetly quite a lot. I was hospitalised just under 3 months and my dad seeemd to think about 3 or so no. I had a lot of visits to the doctor and actually it to went to 8 and not 5.

The notes were upstairs in the surgery.

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NDME

Thank you. I have my notes but apart from problems at birth where my twin died and I nearly did too. I don't know hohow I would get my notes unscrambled. My mum wasn't one for taking me to the doctor. I once twice had hot water burns from the kettle and even though it took the skin of my body, both times I wasn't taken to the hospital or the doctor.

I will just do the best I can. What will be will be.

MsR

I am sorry to hear what happened to you and your sister. I am not expecting you to discuss this given the sensitive nature of it. One of the questions they often is did you have an easy delivery? The sometimes left things really to minute in them days like with me at the point I was admitted not in a good state. My GP notes I can make them out just about. The hospital letters was clear.

I will hoping it goes well for you. When I went for the test I prepared a lot and some of it was not used. It was mostly ADOS on the day. Good luck

WhatThe

Hello NDME,

I was undiagnosed until my 50's and only because I had help from my daughter (who had witnessed many meltdowns 😞)

Nothing I said to my first autism assessor could persuade him to give me the diagnosis. We argued for 30 minutes and he kept refusing despite my supporting evidence.

My daughter (20ish?) accompanied me two years later for another NHS assessment. Not only was I absolutely certain by then, she corrected me when I misunderstood one very important question. She reassured me I was doing fine. Focused questions were interspersed with more general ones sensitively and patiently. This guy had not seen my evidence (I read later in my medical notes) because the first one pretended there wasn't any to send over! I got my diagnosis.

Perhaps the ADHD process is different, I don't know. I think they are slightly different conditions though often combined in an individual. There is a huge void when it comes to identifying girls and women on the autistic spectrum.

The National Autistic Society (NAS) sent me valuable information based on Dr Lorna Wing's research into girls and women. Your insight and close relationship with your daughter is persuasive.

Ps the evidence was my medical history, all my school reports plus a letter I never got to read from my estranged sister because the first assessor shredded it. I'm telling you this because it was a huge battle to be believed and it shouldn't be for any of us. The notion that more of us are seeking diagnosis and they hand them out like sweeties is ridiculous!

MsR

For me, I went to my assessment by myself. Looked after myself and got a taxi there. When there started noting me from the meeting area and until I walked out of the building as that is all noted in my report. I have no regrets going alone, others may need differently and are helped by this like WhatThe has been.

They just spoke to my second person on the phone booked appointment and I wrote as well he submitted a letter as well which they did use. In my case I tried to let my dad be aware of the sort of things that may be asked, but there is no real guessing really and they just ask what they need as well. The letter helped to guide my dad's thinking a bit.