Parental Consultation For Adult Diagnosis?

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Is it normal, or even acceptable, to insist on consulting parents in order to make a diagnosis of an adult on the spectrum?

I have refused to allow anyone to burden my olds with my adult problems. It's not just that, I don't feel that my parents ever understood me or had any idea what I had to go through until I left home. Most of the things I had to deal with at school from the age of 5 I kept secret. Even my struggles at home went mostly un-noticed. My parent's recollection of my youth is vastly different from my own. They still have no idea. The disclosure of certain details in order to establish my childhood and adolescent development and social interactions will hurt my parents very much.

So how is this going to help?

I think it would be ok to ask about doing it but not to insist on it. One thing I have noticed as the parent of an Asperger's child is that I can point out a lot of diagnostic behaviours that I have witnessed over the years but my daughter can't as to her they are not unusual, they are normal. Also parents will be more knowledgeable of some of the things they need to know, such as how your language developed. When my daughter was diagnosed they asked about the pregnancy, delivery, feeding patterns, sleeping patterns, first steps, crawling, all sorts of things that she would never have been able to answer. Talking to your parents could give them a much better understanding of you, however, if you don't want it then don't have it. It's up to you.

You may want to clarify exactly what they mean by 'consult your parents' before you decide. It may be that they only want to gather information rather than actually discussing anything with them. With my daughter they consulted previous schools and other adults who had had a lot of contact with her. This consultation consisted of a standard questionaire with the always/sometimes/never type answers. As I said, fact finding rather than fact giving or discussion.

I don't know if it's normal, and as far as acceptable, I dunno, either. I think there are unacknowledged problems with it, though. And no one seems too keen on working out a solution, unfortunately.

I've always wondered how critically parental "testimony" is taken. In families where there's maybe some abuse (or whatever) going on, the family tradition may be to tell stories (especially about bad or odd things) differently from how they really happened. There might be a strong bias toward saying that everything was completely normal. A very different mindset for the assessor to deal with, compared to a parent who wants help for their child in 1st grade.

Also, parents who have traits themselves may not see various things as abnormal. Apparently, when I was a kid there were neighbors who would say, "normal kids don't do that," but my mother completely ignored them.

And more that I'm too tired to think out right now.

So, I think there are problems. It would be good if there was more research in how ASC's present in adults, though it's hard to imagine much funding going to that instead of toward research about children.

I'm going to say if your parents know and agree that you are seeking the right diagnosis then involve them. If they are ignorant of it, or unsupportive, then don't involve them. Ask the shrink what questions they need answers to - get the shrink to write up the top 20. And present those questions to your parents. Relay the answers.

As for whether it's normal, I'd say yes. I'm in the same process at the moment, and my shrink wants to talk to my family members too. She's got my permission to speak to mom. And that's it.

I wonder why parental consultation is even necessary. If you're seen as having problems in adulthood and similar conditions like schizophrenia are ruled out, why should it matter? In my own diagnosis it was the opposite situation though, with parental consultation being the central mode of information. But it should be different for adults. Adults are advocating for themselves -- not all of them have the support or means for their parents to do this kind of thing.

I think one of the official answers would be: ASD is a pervasive developmental disorder, so how you developed is important. If you developed ASD-like symptoms in adulthood, it might be something else (PTSD?).

Also, if they are to verify the following criteria for AS, they would need parental or similar feedback:

(quoted from DSM-IV for Asperger's Syndrome)

and if they are to verify the criteria for autism, then they need feedback about the following:

(quoted from DSM-IV for Autism)

So having someone who can talk about you at age 2-3 is important. Of course, someone seeking diagnosis in their 50s might not have any parents alive (my situation).

Personally my mom told me about a lot of early signs I couldn't have known when I was evaluated, like having reduced babbling and other pre-5 years old behavior that made it clear I didn't develop these symptoms at a later age. I think if the psychologist had only interviewed me, I still would be diagnosed but the picture wouldn't have been as clear, and thee process would be longer (my psychologist believes in not diagnosing until enough evidence is shown). I am glad my mom was there, because I needed some of that extra proof to believe it for myself.

My parents and one sibling were interviewed as a part of my adult diagnosis. My psychologist discussed with me what was appropriate or inappropriate history to discuss with them first. The psychiatrist and psychologist explained that may family member's recollections of my development were very important to establishing a diagnosis of a pervasive developmental disorder.

My son's diagnosis included answering questions going back to when he was born. What was startling to me was to realize how the patterns had always been there, in so many things I had never given that much thought to before. I think that is what they are looking for by wanting input from your parents: those patterns, particularly since by the time you've reached adulthood you've learned how to compensate so many of your innate difficulties.

How important that piece of the puzzle is to your diagnosis I cannot say. I would talk with the specialist about it, and say what you've said here, and then decide if and how to ask your parents to participate.

It's definitely normal and acceptable, though of course you don't have to bring your parents in if you don't want to.

Autism diagnosis depends heavily on childhood history. Those who knew you best during your childhood are probably your parents. It would make sense to bring in "witnesses" to find out whether you were autistic as a child, and thus probably have autism, or whether you were not, in which case there could be something else going on, like social anxiety.

Autism is heavily characterized by a life-long course; it has its origin in how your brain forms before you were born and in the very early months and years of life. So a doctor who wants to find out if an adult is autistic needs to look into whether they have had the traits they are talking about all their lives, or whether they are newer developments.

Often times, autistic adults have developed an extensive repertoire of scripts, patterns, coping skills, and environmental adjustments to allow them to compensate for some of their autism-related weaknesses. It can be difficult to tell what exactly they can do and can't do under normal circumstances. Looking into the childhood history is a good way to tell what they were like before they learned all those things.

So, bottom line--yes, if your parents don't mind talking about what you were like when you were little, and don't mind shrinks in general, go ahead and bring them in. Their information could be quite useful.

I can see the point in it if your parents are willing to accept that there could be an issue with ASD but if like me your parents refute any kind of labeling - I would see if you can continue without their input.

My mother would argue til she was blue in the face to ensure I didnt get a label, especially if there was no practical reason for having it (in her opinion)