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Original poster

Working diagnosis vs full diagnosis of ASD

13 replies

Scarecrowrowboat · 27/03/2022 17:41

I have just received my forms to fill in to see if I can go forward to assessment for ASD and it says that if I don't have a relative from childhood for them to interview then they can only give a working diagnosis and not a full diagnosis. What does this mean in practice? Has anyone been in a similar position? I feel like I was finally getting somewhere and now I just feel sick and like it's impossible.

OP posts:

BoardLikeAMirror · 27/03/2022 17:47

Oh, no. No advice but I too am seeking diagnosis and have no suitable relative - my parents have dementia and my sister is younger than I am and always says she can't remember her childhood. No other relatives that I am in contact with. If this is true then I am stuffed too .

Original poster

Scarecrowrowboat · 27/03/2022 17:51

@BoardLikeAMirror It may be that a working diagnosis is adequate for some things but I just don't know. It took me years to get up the courage to ask for this referral and I just feel a bit hopeless again now.

OP posts:

BoardLikeAMirror · 27/03/2022 18:07

I hope so - it would be good to know what the technical difference is.

Unlike my sister I have a very good memory of my childhood, with my earliest 'datable' memory being just before my second birthday so I could probably answer a lot of questions myself, but I suppose that's no good if they are looking for a different perspective.

I suppose I could ask my sister if it 'ticks a box' but I feel very nervous about telling her this - the only person I have told is my husband. & DSis's full-time job is very inflexible so they might struggle to find a time to speak with her (if she was even willing to do so).

Percie · 27/03/2022 18:49

I didn't have someone from childhood but still received a full diagnosis. I had various school reports and other experiences from childhood I could tell them about. Could you contact them for more details about what that means?

BoardLikeAMirror · 27/03/2022 19:06

That's reassuring to hear, Percie.

Percie · 27/03/2022 19:19

From what the psychologist said it's not uncommon for adults to have nobody available. In my case I didn't want to tell family and felt I couldn't ask them. I queried with the team and they said it was fine, they have this fairly regularly. It helped that I had school reports to provide an independent corroboration, but I don't think that's necessary.

duvetdayforeveryone · 27/03/2022 21:52

@Scarecrowrowboat

My aunt came with me to my appointment.

BoardLikeAMirror · 27/03/2022 23:08

I unfortunately lack extended family - my father was an only child; my uncle on my mum's side is no longer with us, and I haven't seen my cousins since the 1990s (and rarely saw them before that as we lived in different parts of the country). My sister and my parents are the only living people who knew me as a child and whom I am still in touch with .

BlackeyedSusan · 28/03/2022 01:28

I got a diagnosis without a family member from childhood. they interviewed a friend of about 15-20 years.

CoffeeWithCheese · 28/03/2022 10:35

I have a full diagnosis. My husband was present for the interview (well by present I mean playing on his phone and shouting out responses when required). I also have one child with autism diagnosed and another with it suspected as well so it added weight to it somewhat.

Think it might depend on the clinician somewhat - I was originally trying to go via university who were following the "need a parent or it'll just be a working diagnosis" line - but the queue was maddeningly long so I went private in the end.

TuftyWump · 29/03/2022 22:47

I sent through the initial assessment and have now received a letter saying they think there is sufficient evidence for a full assessment and I should have someone who knew me in childhood and I don't have anyone either. It says there will be a long wait so I'm going to wait and see what happens as and when my appointment comes through. I'm so relieved that they have accepted what I have said so far to be honest. Don't give up.

Original poster

Scarecrowrowboat · 31/03/2022 19:02

Thank you everyone I'll just hope for the best. The form says you can invite someone who has known you for a significant part of your adult life so maybe that will help. I had a look through the childhood questions for a relative to fill out as I do have a sister who is younger but age gap is large. I couldn't have answered the questions if I was being asked them about her so I don't think there is any point asking her, i'm not super keen to talk to her about assessment either.

OP posts:

ASDorNO · 31/03/2022 19:10

I'm in the process of supporting my 20 year old DS through assessment (first interview tomorrow) and the form had three sections; one for me to fill in (as the person who knew him as a child) and another section that he could have filled in (asking him about his childhood) if there was no one else that he could ask, and then the third section is for him to fill in and asks about why he's seeking an adult assessment.

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