How did your parents react if diagnosed later in life?

[SunnySnowdrop]

I'm currently undergoing an asd assessment and they want my parents to fill in a questionnaire. I had an appt recently where they asked if this had been done yet, it hasn't. They asked why and I said I knew my parents would be dismissive and that I just couldn't be bothered with dealing with that. They encouraged me to broach them and as I suspected I got an instant response of 'you're not autistic' 'there's nothing in your childhood that was unusual'. I pointed out something I used to do as a child 'lots of kids do that'. So basically the conversation went exactly as I had predicted. How do/did you deal with this and was it any better if you actually got a diagnosis?

If you are asking in terms of the emotional side, I would stop discussing it with them.
If you get a diagnosis, I would let them know that, and then leave it there. No point in going over it with them if they aren't willing to be open.

If you mean 'how do you get round the fact the fact the Dr wants to know about your life as a child when your parents won't help?' - then I guess you talk to another adult that knew you well...and Aunt or Uncle maybe, or a sibling, or a close cousin or friend. Or potentially a teacher or youth leader (if you are a young adult and they will remember you).

Well this is exactly why I didn't want to tell them I was being assessed. No doubt they will continue to ask about it now though.

I'm 45 and no other family to ask.

It doesn't need to be your parents.
I asked my manager at work (we are also friends) who has known me 4 years to be my witness/reference.
My parents and siblings wouldn't have been able to do this properly, and I only have one childhood/school friend and she's going through some stuff herself so I didn't want to ask her.
My manager could also say very clearly the effect it has on me/my work as she sees me way more than my family do, and how my disability affect me. Also my family would have been prejudiced in their report about me (and they all have undiagnosed ASD/ADHD! )

You need to have had the traits from childhood, which I was able to describe myself.

During my assessment (ADHD) I didn't feel I had to prove I had it, they asked the questions and I answered truthfully.
I thought I would be on the borderline or wouldn't be taken seriously, but this wasn't the case and I didn't have to exaggerate or justify or explain.
I scored very highly and was diagnosed (which I wasn't told until the end of the 90 mins)

Hope it goes well for you, in my experience the assessment itself was not unpleasant.

I would get them to fill it out anyway. My mum was quite worried/upset when I pursued ADHD diagnosis and didn't really get it, she kept telling me "It's just a label, it doesn't define you" (I know!) and "There is nothing wrong with you" (I know...) and then she sent me links about dietary treatments because she was worried about medication.

I think in their generation the stigma from labels was much greater and overrode any benefits about understanding or accessing treatment, which was why nobody got diagnosed unless they were compleyely unable to function without one.

Reminded also of my son's teacher who told us "I was very surprised you sent us that ADHD questionnaire as he does not seem ADHD to me at all!" however, she marked him as worse than we had on all areas relating to attention and focus!

Just because they do not see a problem, doesn't mean that their input will not be valuable. Remember that neurodiversity runs in families, so quite often parents of neurodiverse kids say/think "Well that's perfectly normal isn't it, everyone does that?"

Mine didn't believe me when I told them I was autsitic.

The assessment team were keen for them to be involved, but due to my childhood, I didn't want them involved at all ...not even filling in forms. Instead my husband completed the ARI-R at a separate appointment. I'm still glad they had nothing to do with it.

I understand the assessment process asks that ‘ideally’ another person/relative can add information about the assessee’s childhood (might have just invented a word for person being assessed). I think they can manage without another opinion if you have good recall for your childhood and can give lots of detail. I can imagine more than a few cases where people find their elderly parents or family just don’t want to open that box again. Also, as pp have mentioned, if other family members are also undiagnosed neurodivergent in some way, there may well be the ‘nothing to see here’ response. No one can force their family to cooperate, after all.

I’ve wondered on and off for years how much of my way of being is due to childhood events and how many of the childhood events are due to my way of being. Both my parents are dead and we were not a close family, hence no cousins or others who saw enough of me as a kid to comment. I’d like to pursue an assessment when I can afford to, and yes, I think my dear dad was definitely autistic, and maybe mum too. I actually think it has taken the emotional distance afforded by them no longer being around for me to really reflect on their way of relating to the world and how it is similar to mine. If we are still needing to have an active relationship with our family, it might mean we just can’t be that open with them, and we may still be caught up in patterns that we had to learn as ways of coping with family members.

I'm around the same age as you, OP. Diagnosed autistic last year by the NHS. Told them in advance I didn't have anyone who could objectively fill in the background questionnaire and they were fine with that. Said it was quite common.

I haven't discussed it with my family and probably never will although I'm pretty sure my father and siblings are autistic too.

Only way it would ever come up is if my autistic DC wants to raise it (or if someone makes a tactless anti-autism remark and DC takes them to task over it, in which case DC would have my support as always).

Can't see it doing anything other than causing conflict and distress at this point. They've never been supportive or understanding but my parents are quite elderly now. I don't see them much and when we do meet we usually rub along ok these days so I really don't want to rock the boat.

I haven't told them. They are too old and unwell for there to be any value in it - it would only confuse them. My sister knows and is in agreement.

Do you have any school reports? I had a few and took those which was enough to build the picture. Lots of 'doesn't speak', 'needs to not be shy', 'academically able but doesn't interact with peers', etc., was apparently consistent enough to support my diagnosis.

I haven't told my parents. I think they'd be supportive so it's not that. Maybe more that I'm lucky and they've always supported me as me and accepted me in a way nobody else does - I don't want to rock that boat, none of us need a diagnosis to make sense of each other.

I recently got an autism diagnosis from the NHS, and didn't have anyone who could reliably fill in parts of the forms about my childhood. I explained this on the forms and just filled in my own recollections as best I could. I got the diagnosis on the day of my face-to-face assessment, so it's not necessarily a barrier.

The assessment practitioner said this is a scenario that comes up quite commonly, so they just assess on the information they do have.

Although I expect, as PP mention, that old school reports or recollections from anyone else would help if you have them.

I’m having an initial chat with a psychologist today - feeling nervous even though it is just a chat and a chance for me to ask questions before doing an initial screening to find out if a full diagnostic assessment is likely to be worthwhile. She was super reassuring about my not having any surviving family who remember me as a child. She said some people don’t even want anyone else involved and they are used to working with all sorts of permutations. I guess if someone is questioning themselves later in life then this is going to be likely ie no surviving parents, or not a good relationship with them. I’ve actually asked the person who is probably my closest friend and who has known me about 30 years (😱 how did that happen, surely we are only 25?)

Hope today was ok for you.
My mum came to mine and I think it was quite helpful for her - she gave loads of examples and got it all off her chest! It was a bit of a moment I think for both of us, me to finally get validation that I'm different not defective and her that my childhood was always going to be that way.

I had a reassuring chat with the psychologist who said it is very common for adults not to have anyone around who can comment on them and their development. People my age may not have parents who are living, for one thing. I felt very odd and fraudulent in spite of how nice she was, as if I might be wasting her time; she told me that, too, is pretty standard! I don’t know what my mum might have said about me, only that she found me difficult as a child. Mum had severe social anxiety herself. My poor dad would be impossible to talk to (as he was for me) because he barely spoke at all. Anyhow, I have booked an initial screening appointment to see if it’s worthwhile proceeding with a full diagnostic assessment. Feeling nervous!

Oh that's good though - first steps are important. I think it's difficult to find someone who gets it sometimes if we have masked , none of my adult friends believed me when I told them despite knowing me as a child. Like I don't fit their idea of autism.

I didn’t tell my parents till after I got my diagnosis. Thanks to the fact that my son is diagnosed they already had an understanding. They didn’t seem too surprised and instead just felt bad that they hadn’t picked up on it. I reassured them that they had nothing to feel bad about as it wouldn’t have been picked up on in the 70s and 80s.

I don't know if this is still relevant OP, but if your parents are in denial, there is a possibility that completing the questionnaire about your impulsivity/hyperactivity/focus as a child might prompt some reflection. No guarantees of course, but it might lead into a discussion if you were to get a diagnosis that you weren't just difficult/lazy/whatever.

Don't worry if they score you wrongly. It won't make a difference to the diagnosis if you have other markers, it's just one part of the jigsaw.