Parental denial or wrong diagnosis?

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I'd be interested to hear what anyone thinks of what happened to me today.

On Tuesday I had my appointment at the "Autismusambulanz" (Autism Clinic) for my assessment for Asperger's. The assessment lasted for one hour and included all the relevant parts of my life-history, after which the person who interviewed me (an autism professional below the degree of doctor) told me that I was right in thinking I had AS and that any relevantly-qualified psychologist would give me a diagnosis if I repeated the same information to him. He then gave me a number to phone to arrange to get the official diagnosis, as well as offering me membership of the local Asperger's support group if I wanted it.

However, I am 57 and have no memory at all of events before the age of about 5. I want to be as sure as I can about the diagnosis so I phoned my father, as he is the only person who knows what I was like as a very young child. He is 80 but mentally and physically fit. I explained the situation to him and asked him if I could ask him about any early childhood symptoms. When I read to him a llst of common childhood symptoms of a) early childhood autism and b) Asperger's he replied that I had had NONE of the symptoms whatsoever as a child!

My partner thinks I have Asperger's and says he's lying, while I can remember doing things like hand-flapping, moving objects in front of my eyes and pouring water incessantly from one container to another etc, when I was young, so he was lying about that.

Still, maybe he's telling the truth about the other symptoms and the completely Aspergerish nature of my adult life is just unexplainable.

Now I'm really unsure, because I realise I can get a diagnosis if I want it (and there could be practical advantages to having it), but what I really want isn't a piece of paper but the knowledge that I've found the answer to what's been going on all these years.

Anyone got any ideas?

I remember doing that on my back porch when I was young.

I have a feeling that I'd have this problem with my mother, that if she went to talk to a psychologist that she would lie to make me seem more normal or really have forgotten. Even with me I might feel like I need to give the "right" answers to not make myself look bad.

I asked her now and read the list to her and she thinks I may have had some of the symptoms.

Even if you did those things as a child, would he have noticed? I have heard that men of that generation did not do a lot of childcare, especially of very young children. It is quite possible that you did those things but he had no idea that you did them because caring for you was relegated to your mom and other female relatives.

My parents are the same way and I find it incredibly confusing. My mother has told me before that when I was a baby she had to lie on top of me to get me to go to sleep, but when questioned about my infancy by professionals she kept her lips sealed and insisted that I had been completely normal.

There is a possibility that your father is not lying. My own kids (I'm fifty-one, and had my first child at age thirty-five) took a long time to get diagnosed, because, as it turns out, I am also on the spectrum, and did not know the first few times my wife and I filled out their evaluation forms.

The problem with not knowing, or even having an inkling that you might have AS or some other form of Autism yourself, is that you tend to think of Autistic behaviors as normal. Most of the evaluation questions are "comparison" questions. They are questions that ask you to compare your child's behaviors to other children's behaviors, or your own behaviors with that of average adults.

The problem with that is that, if you have been Autistic all of your life, you may tend to associate with other people that are not "average" or typical. This can give you a slanted perspective on what "normal," "average," or "typical" really is.

Also, your father is 80 years old. I think it is safe to assume, as another poster here suggested, that when you were quite young, he may have spent a lot more time doing and thinking about other things than specific behaviors in his children. I'm not saying he never paid attention, but he may not have paid as much attention as, say, many fathers are encouraged to today.

If my math is correct, he would have been born around 1930, and you being 57, means you were born around 1953, correct? Father's involvement with their children's upbringing was very different back then. I was born in 1960, and my father was the same age as yours at that time. My dad was very involved with my upbringing, but he was quite different than most other fathers I knew. He was an "oddball" in many ways, and paid a great deal of attention to me. I was also an only child, so he remembers quite a lot of my own odd behaviors. Your father may very well not have noticed the things you are questioning him about.

Also, as sharp as he may be at his age, your childhood was still quite a long time ago. It is not inconceivable he has forgotten a lot more of it than he'd like to admit, especially to you.

I honestly doubt he was lying. What would he or you or anyone have to gain from lying about something like that. I know you're probably thinking he doesn't want to accept the stigma attached to the diagnosis, or that he may not believe in the diagnosis at all. That may be, but if that were the motivating factor, he'd be more likely to admit you had the behaviors, and deny there is anything unusual about them.

Then, there is the possibility, as with me, that he may also be on spectrum, or at least close to it, enough to dismiss it all as normal stuff.

I really don't think he's lying.

Last edited by MrXxx on 13 Oct 2011, 1:54 pm, edited 1 time in total.

Keep in mind you don't have to have every single symptom to be diagnosed with anything, including Asperger's or Autism.

That being said- If you clearly remember doing things he says you never did, maybe it's a situation where you need to trust yourself, since he's not remembering things.

When I was going for my diagnosis I spoke to my mum about what I was like as a baby and young child, and also as I was growing up.

I made this into a just "generally interested" conversation as I did not want her to be influenced in any way (positive or negative) by the words Autism or Asperger.

To my absolute surprise she described a huge number of traits typically ascribed to children with autism. I had imagined she'd have mentioned a few things, or nothing at all as I assumed I was in the "mildly affected" group - and it left me wondering "why the heck did no one pick this up earlier?" - especially as I was a second child, and my brother displayed none of these things.

The thing is, my mum just saw me as me, and my traits as part of me, and encouraged my strengths and individuality. So she didn't see any of my traits as problems (even though in reality, looking from my internal world growing up as opposed to her viewpoint, they really were).

I haven't told her about my diagnosis and don't intend to - she would never understand why I needed to "get labelled" (though I don't see it that way, I see it as getting an explanation for the difficulties I have encountered in my life, and hopefully finding ways to better cope with some of the difficulties that still trouble me)

If I were to ask my dad about what he remembered of my early childhood, I doubt he'd remember much at all (just because my mum was a primary care taker, and he worked long hours).

And if I had read off a list of traits to either of parents asking them whether I exhibited them or not, I'm sure that they would have probably denied them due to the language used ... I just get that feeling, although my mum's "free description" would have backed them up.

So it's possible your dad didn't remember, didn't understand the "language", didn't want to admit that something might have been "wrong" with his child (what parent wants to think that? - I personally don't think that "wrong" is appropriate word here ... but if someone lacks an understanding of ASD then that is often the view taken when it is mentioned), or any number of other reasons for his response. It doesn't mean the diagnosis is wrong.

What was on the list of childhood symptoms, exactly? The verbal descriptions of the symptoms don't really paint a picture of what a child with those symptoms would be like. If your father can remember specific weird incidents or habits from your childhood, then you may be able to relate those experiences to the verbal descriptions.

There's a good chance your behaviors never registered as odd to him and he doesn't remember them as black and white as the descriptions of them sound. In our own family I saw bunches of small things that were 'odd' in our daughter while my husband only saw 'quirks' she'd grow out of. He chalked up the oddities to 'normal kid stuff', and even now, with her diagnosis he's still connecting those dots.

I wouldn't fault him with lying per se. Memory is an imperfect thing and is much too easily influenced by emotion, desire, denial... He's probably remembering to the best of his ability - there is no way to confirm if his memory is true or not.

You're 57 years old and your father is 80... that could be part of it. I don't mean the age; I mean the era when he grew up and when you grew up. You were in your forties when Asperger's was first popularized; when you were a kid, it was unknown, and autism was still called "childhood schizophrenia" and thought to be extremely rare. Not just that, but the idea of disability was still connected to the idea of severe, obvious, extreme conditions. Your dad would have seen you grow up as an AS child and seen not a disabled child but a sensitive, awkward child who simply didn't get anywhere near his idea of what "disability" meant. For your dad's generation, "disability" was something that meant you couldn't work, couldn't have a family, couldn't take care of yourself; your family was heroic for keeping you at home rather than putting you in an institution. So when you talk to him about that, you trigger all those ideas, and he thinks to himself, "Well, sure, he was a nerdy kid; but he wasn't disabled." Because, fifty years ago, "disabled" was something so obvious that you could see it at a glance. And then there's the fact that parents and kids share genes--including genes for autism. Your dad most likely has autistic traits himself; so your own autistic behavior as a child would seem more normal to him than it would to a typical person. My own mom made this mistake with me--she herself is probably autistic, but undiagnosed; when she saw me growing up, she thought my behavior was within the normal range because she also did those things as a child. I talked to my grandmother about my mom's childhood, and apparently she had some pretty obvious autistic traits. Incidentally, my mom's your age, lived in Germany until 1990, and her autism was missed for her whole life too. My grandma hadn't a clue--why would she have? My mom made normal grades in school, didn't detach herself from reality... Sure, she had meltdowns over whether the bread was cut the "wrong" way, and she refused to read storybooks, keeping entirely to non-fiction... But she was "normal", as far as my grandma was concerned. And, yes, my grandma has autistic traits too--though nowhere near the diagnostic level.

The list was from "myaspergerschild.com" and included 40 symptoms of early childhood autism, including things like not responding to cuddles, focussing on parts of objects, not responding to one's name etc., because I wanted to know about these things too. When I saw the answers were all negative I realised it was probably better to use the list for Aspergers itself and read that list out too. I think there were a lot of things in the list about strange language use, not playing with others etc.

By age 5 or 6 I'd learned to keep most of my bizarre motor behaviours private (which would explain his ignorance of them), but I would have thought they must have been public before they were private, because otherwise how would I have learned to do them in private if not by parental disapproval?

"Lying" is too strong a word for his denial. I was floundering around trying to explain the discrepancy between the two "verdicts".

It's good that you can admit that. Though I was about to post that my own assessment might have been unfair. You do, after all, know your own father, I'm sure, better than anyone here.

Denial does seem to be more likely though. If this is a new concept for him, it may take a while for him to become more open to the idea, if ever. I just wouldn't pressure him too much about it. Bring it up, perhaps, now and again, in the form of questions about your childhood. And not in a direct way if you can manage it. It may get him thinking.

To tell you the truth, my father, as involved as he was with me as a child, was more the type to say things like, "You were just too smart for the schools." He would say the same things about my kids when they started having trouble in school. It took a while before I would answer, "Maybe, but I can't help thinking there's more to this," and then bring up one or two questionable things.

I think what really got him thinking was what I mentioned above. The fact that if I have Autism might skew my own thinking. I never suggested he did. Only that I might. Eventually, he actually accepted that I must have it, even before I finally was diagnosed. Recently he's begun to admit to me that he was also a lot like I was, and my kids are, in school and as a child in general. He hasn't quite come right out and said, "Hey, maybe I'm Autistic too," but the underlying insinuation is definitely there.

But then, he's 73 now, so what is there to do about it for him at this late date? He's not likely going to learn much in the way of anything that will help him for the remainder of his life. Water under the bridge, as they say.

Last edited by MrXxx on 13 Oct 2011, 2:47 pm, edited 2 times in total.

The first eighteen months he was in Germany while I was in England with my mother and grandparents. I doubt if he saw me much during the next few years either, just at weekends. He says my language use was really advanced for my age and that I was like a "little professor", so he noticed that, at least.

As someone else said on this thread, if the parent has autistic traits they just see them as normal in the child. Strangely enough, I can see more autistic traits in him than he can in me!