Is family particiaption needed for adult assessment?

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Hi there,
I'm a 27 year old male and I suspect I might have aspergers, it certainly would explain a lot. Its taken me several years to get to the point of actually seeking help in the form of speaking to a professional about this and I am not sure what to do next.

So I contact a private practise who specialise in autistic spectrum disorders and have experience dealing with adults but they want me to get a parent or one of my 'trusted' brother/sisters to fill out a questionnaire to assess early childhood stuff before we begin the assessment. The problem is I don't have any real connection to any member of my family and I don't trust any of them enough to get them involved in this process, I'm a very private/lonely person as I am sure a lot of you can relate to. I still live at home with my mother and other sibling but I have never felt part of the family if ya know what I mean.

So my question is how important is it to get family involved in the assessment process?
Is it necessary?

I have never opened up to anyone about what goes on inside my head and I certainly don't want to start with my family, I think a stranger in a pre-organised psychologist style setting would be far easier for some reason, with both of us knowing our roles so to speak.

I don't think my family are bad people, I just don't have any interest in discussing anything with them, especially stuff like this. I think I have spent so much of my life alone that talking to someone I know about this stuff is a pretty terrifying prospect and one which I really don't want to go near at all.

I don't have any friends either so cant get someone outside the family for the information. I am going to email the practise back and explain to them and see what they say but would like to hear from you guys too.

Sorry for novel, it would seem my 'awesome' typing skills have gotten the better of me

Any comment are welcome,
Thanks

Family participation is usually required, but maybe not in the sense you're worried about. Your family won't be present when you talk to the professional(s) doing the assessment. You will be free to tell them what's going on inside your head. They may however wish to interview your parents (or older siblings) *separately* because Asperger's manifests in early childhood and a diagnosis can only be made if symptoms were present in early childhood. Now, I broke off contact with my family fifteen years before I got diagnosed, and I had the same worries as you do. However, the psychiatrist doing my assessment told me after the first interview with me that she was very likely going to give me a diagnosis. Because it didn't depend on what my parents would say after that I finally got my mother to fill out a questionnaire about my childhood (instead of an interview). I had her send the questionnaire back to me and only handed it to the psychiatrist once I had convinced myself that my mother hadn't distorted the facts all too much (there still were some responses I didn't agree with, that contradicted my memories, but I let that slide). Anyway, the questionnaire supported the Asperger's diagnosis and showed that symptoms had been present in early childhood. Now, the way I got my mother to fill out the questionnaire was by explaining to her in a letter that autism is genetic and that it's possible that any children my brother might have might be on the spectrum too. That was enough incentive for her to do it. I never spoke to her or any other family member about it. I just informed them again in writing about the diagnosis once I had formally received it.

My family would never do this, I've mentioned it to two of them and they just went into bonker denial. I barely speak to any of them now anyway - my mother stopped speaking to me because of another sister and the rest of them, I don't hate them but our relationship is just surreal, I don't know how else to describe it. If a diagnosis depended on them, I would never get one.

It shouldn't matter, I was diagnosed at 32 last year without consultation from my family. I did however have a referral from a psychotherapist and gave my permission for my information to be shared with the assessor, so they knew in advance that my parents were unobtainable.

There are alternatives other than family members, but it has to be someone who knew you when you were very young and had (almost) daily interactions with you back then.

Firstly, a diagnosis would ideally happen in childhood. But in reality, many Aspies are not diagnosed until later. Although having a parents' input is optimal, it is not necessary. In some instances, it is either not feasible or even possible, such as if the parents are dead.

Like others have posted, another close relative's input would be helpful, but it is not requisite. Do you have a trusted neighbour from your childhood? Maybe a favourite teacher? If not, then your diagnostician merely works with the information you have at hand. Another option, if applicable and/or appropriate, would be to bring something tangible from your childhood: a book report, presentation or art project. Even an old report card with a teacher's written assessment.

vamla: If you do not have it, just tell your diagnostician - I'm sure they'll understand. No worries. And, Welcome to the Wrong Planet!

Heh heh........I am ambidextrous. I found an old report card and in the box where the teacher is supposed to check whether the child is ___Right Handed or ___Left Handed (X to indicate which one), my teacher just wrote, "Yes," ticking both boxes.

...

Last edited by Willard on 17 Feb 2014, 3:41 pm, edited 1 time in total.

One of the most important parts of an autism assessment is to exclude other possible diagnoses that would explain the symptoms someone presents with. It is in no way irrelevant when symptoms started. An autism diagnosis can only be given if symptoms were present in early childhood. If symptoms only started during adolescence or young adulthood this means that it's not autism, and there's a range of other possible diagnoses that explain those symptoms.

The issue is that Asperger's/AS is by definition a developmental condition. For that reason, it is necessary for the diagnostician to a good picture of one's childhood apart from just recollection.

But wouldn't speaking to people about it all those years later be hit and miss since parents may either be overly or underly sympathetic or in denial or blaming or a million other things. Or maybe they were just hard on the kid and thought it was developmentally delayed when the kid just wasn't ahead of the pack. I really think its a faulty way of diagnosing anything.

I'm in the middle of my assessment now, and went in for my intake eval ten days ago. The diagnostician gave me some paperwork for my mom to fill out, the BASC-2, but she asked first whether I was in contact with my parents (I live with my mom, so, yes). I suspect she wouldn't have given me the paperwork if I'd told her I didn't have any family I could contact. I'd be very surprised if they refused to go ahead with the evaluation just because your parents aren't involved; I've known people here on WP who weren't diagnosed til their 50's, and in instances like that, sometimes the parents are no longer alive to give an opinion. I'm sure they'll work something out for you if you have no family members who can help with your history.

Well, the assumption is that their memory is still better than yours. Myself, I don't have any memories before age five, and children are not usually very self-aware.

An adult I know of had this same problem.
As a recourse he got a copy of his school records which contained teacher observations about his development, behavior and personality.
They were all pretty much describing a kid with autistic traits.

There's no standard. It's simply up to the preference of whoever you see. In the UK, C.H.E.S.S. won't DX you without it for any reason, whereas others won't require it. If you need school records don't wait -- my school (in the USA) destroyed them after 10 years (was one year too late).

This sounds pretty straightforward to me. They want to know your behaviour as a child. The questions will probably be fairly specific.

I had to have my mother attend a session with me, my psychiatrist and her student. It was horrible. Nothing like listening to your mother going on about how traumatic it was to raise you. But I got the diagnosis.

Which is what things like the MMPI are for, but gods forbid the practices of experienced clinical professionals in the field contradict your considered opinions.