adult ASD and "stigma" for relatives - should I push for a dx or just pull my head in?

[Svalbardy]

i've posted on here occasionally before; am a mum of 4m.o dd, I probably have mild ASD.

A diagnosis will make very little difference to me, but i'm being pushed by the NHS to get a diagnosis, but my family won't help - largely because anything to do with mental health to them is massively embarrasing and stigmatic.

My GP has referred me to the local NHS mental health team because of recurrent severe depression... i think the referral is because it now affects DD whereas before it was really only me who lost out when I said "no I'm fine I can cope". The psychiatrists there have basically made the mode of treatment for depression contingent on whether I get a diagnosis of ASD or not.... and unti lI get that diagnosis they're doing nothing "so as not to do the wrong thing". Gee thanks.

As many of you will know, a diagnosis of ASD depends on input from family members who knew the patient as a child.

My family are not only a long way away, but also have refused point-blank to have anything to do with filling in questionnaires because they think the whole thing is ridiculous. According to them, i should just snap out of the depression and get on with life and stop whining; and they think the idea of ASD is laughable because ASD means autistic savants/screaming savages (and nothing in between): I'm clearly just trying to find a medicalised acceptable excuse for having been a spoilt sulky strange brat as a child, and an antisocial, strange adult. No wonder I live a long way away... and yes I know htat their attitudes are silly, but there's not much I can do to change them given that they think I'm a weirdo.

It's looking like actually getting a dx is going to be way more trouble than it's worth. I would like not to be depressed. Should I just ask the psychs to ignore ASD tendencies and please get on with treating me?

I can't understand why a label should change what treatment they give you. I might be being ultra thick with wings here but if you have ASD tendencies then you HAVE them so they can surely weave that into the potential treatment. What is your partner's opinion or close friends - they may well have a better idea than your family.

Also, from your family's perspective (I'm thinking as a mum here) if you are diagnosed then there is an implication that they were somehow lacking in never realising. Perhaps they need some support in realising that in HFA/some aspies that it is sometimes very difficult to disentangle the condition from the visisitudes of childhood.

Speaking from a position of complete ignorance, there must be ways of dx you even without the family's input. I mean, what if they had passed away? There are more experienced MNetters out there, but I think the NAS (National Autistic Society) could also help you fight to get properly dx-ed. Good luck, you're doing the right thing for you and your dd

I know where the OP is coming from - the docs do like to find out how someone was as a child before dxing ASD. I think you should tell them to carry on treating you regardless of whether you follow up the ASD diagnosis - as there's no guarantee that if you get referred you will get a DX anyway, and you don't know how long it will take to get a DX - it doesn't really make sense for them to twiddle your thumbs while you wait to see the relevant doctor.

btw could any of your old school teachers help out if you felt OK about approaching them?

thanks for the suggestions, chaps. Unfortunately don't know where the only 2 teachers I had who understood, are by now... given that I had them in 1982 and 1984. Had no schoolfriends or uni friends; subsequent colleagues unlikely to be any help, given that they have all seen more of the depression than the ASD side.

I have asked the psychs to carry on regardless, since as said above by two of you, it shouldn't make any difference to what they actually do.

What do you do about relatives who are unsupportive, though... I'd imagine just let it go; but as I like having an exact explanation and predictive power for everything, I can't understand why my rellies would prefer not to know. Particularly if it makes them less "culpable" for "bad parenting" or whatever their hangup is... I don't think they're hung up on not having noticed, given that they don't actually believe in ASD being a spectrum. I definitely don't think anyone had heard of ASD in my outpost of the Empire when I was growing up. We knew about low-functioning autism, because of The October Child by Eleanor Spence; and we knew about savants because of David Helfgott and books by Oliver Sacks. Anything in between was bad parenting by stupid mothers, or bad behaviour by overtired children.

I think the older generation are completely unaware of Aspergers/High Functioning Autism - bear in mind that people didn't really become aware of Aspergers in this country until early 80s, it just wasn't known about when we were kids at school, if you were a well behaved girl who did OK academically it wouldn't really hit people's radar if you had social problmes IME. And of course you can lead people to information, but you can't make them want to engage with it, still less take on board your views about it....

I would have thought that even without independent info about your past, that your account of your past and how you come over socially/conversationally may be enough for them to go on when deciding about a diagnosis.

My parents were not consulted by anyone other than me when I was getting my diagnosis. I know they would have been supportive, my mum is quite straight now in saying how I was as a child from her perspective, but the psychiatrist never asked her. He did have experience in diagnosing adults which might have helped.

"As many of you will know, a diagnosis of ASD depends on input from family members who knew the patient as a child."

Not necessarily. My family are like yours and the first time I requested assessment, part of the reason why I don't complete the second half was because they asked me to bring back someone who knew me as a child and I didn't trust any of them to either recall any events as significant or to tell the truth if they did.

4 years later, I wrote a letter to my GP explaining very specifically why I thought I had autism and how it affected me. Additionally, I was unaware that the consultant had made his own assessment on things like eye contact during my appointment with him until I read his report later so it can be impartial without external input.

Not to put words into your mouth, but you do think they may feel more in control without you having a diagnosis?
Do you feel they may have autistic spectrum tendencies themselves?