Is AS being overdiagnosed?

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How old is this person, and how old were they when they were diagnosed?

It could be that early childhood presentation does not map "linearly" to adult outcome. So, maybe someone is a really, really autistic 4 year-old, but even without any intervention, grows up to be relatively normal. (I recall reading somewhere that people with the "worst" presentations in childhood actually tend to have better outcomes. (But I can't remember the citation for that.)) Or, maybe there is a high level of error in diagnosing people at very young ages, that is currently underestimated or unexamined.

I'm convinced that people are still being missed. My daughter is now 9 and since finding out about Asperger's I am convinced she is somewhere on the spectrum.

We have always known she was quite an eccentric little girl, with a very rich internal world and a fantastic imagination.

She has had a consistent theme in school of having problems concentrating and finishing her work and has only achieved in the average range, despite being told when she started school that she was a candidate for the "gifted and talented" stream.

She has problems understanding figurative language and is very pedantic in how she likes language to be used and will frequently correct me.

I am never sure whether she is listening to me or not because she does not give any indication that she is paying attention - even though she usually is when I ask her - and I now think this probably comes under the heading of inappropriate nonverbal communication and eye contact.

She has not been bullied and on the surface seems to get on ok with the other kids at her school. But she never seems to have any close friends, never talks about her friends outside of school except to mention if someone has been told off, rarely gets invited to parties, never gets invited to playdates and has no interest in inviting any of her friends over for playdates, and quite often says that she had to play by herself or play with the boys because she didn't like the game the girls were playing (although this does not seem to bother her very much as she prefers her own company to doing something she doesn't like). She is also starting to moan sometimes about the girls falling out with each other about silly things and her not really understanding why.

She has called herself "weird" since starting school, and although our reassurances seemed to help her initially, recently she is coming home using these kinds of adjectives about herself more frequently.

She is quite clumsy and terrible at sport or at dancing where she has to coordinate with a group. She also has terrible trouble with her handwriting despite being singled out for extra practice.

She has clothes that people have bought for her that she simply won't wear because she doesn't like the way they feel, or that we have had to cut the clothes tags out of for her. There are some foods she won't eat because she says she likes the taste but not the texture.

Despite having concentration problems generally (even with things she enjoys like pottery painting) she can concentrate for hours on her special interests, namely playing Spore, Sims or Roblox on the PC (and less so anything to do with Dr Who, dinosaurs or the human body). She also prefers to read non-fiction to fiction.

She has difficulty knowing when to start and end conversations. She will interrupt and then keep on talking, even when I have given her quite obvious cues to stop, sometimes even carrying on after I have left the room.

She gets annoyed if the timetable is changed at school and always moans to me if she has missed a lesson. She will always question me if I turn up earlier or later than expected to pick her up, even if it's only a couple of minutes different from usual.

BUT because she is a very easy child in terms of her behaviour, and her grades are ok (although I strongly suspect she is underachieving and a couple of the other teachers have hinted at this) and isn't actually attracting outright hostility from her peers the school do not see any cause for concern.

I myself have always seen her as being quite different from the other children, but it never really worried me too much because our whole little family is quite different and she seemed happy. Before finding out about AS I thought that was quite a good thing because we weren't ever putting a lot of pressure on her to fit in as both myself and my husband really valued her unique perspective on life, and we focussed our efforts instead on building up her self-esteem when she had little knocks in the hope she wouldn't change too far and make herself miserable trying to fit in too much. Finding out about AS though had changed my perspective quite significantly as she is now a pre-teen and things are potentially going to get a lot harder for her if she does have any underlying social problems. I am not sure whether to pursue a disgnosis for her or not at the moment. There are pros and cons either way, especially with the school not on my side, and it worries me that it will cause problems that may not have been necessary,

If overdiagnosis was happening in my area I would have thought she would have been suggested by now?

LittleBlackCat

Your daughter sounds very like my almost 6yr old, except she has behavioural problems (although she's a lovely girl) and has good hand writing and I wouldn't describe her as clumsy. She doesn't like team sports or choreographed dancing, but is very good at individual sports, like swimming and athletics. I was on another forum where I described her school performance and another poster said she sounded like she was 'twice exceptional', which I'd never heard of before. Have you heard this term? I googled it and it definitely describes her and it also describes me as well. In my case, I was recognised as gifted in several areas, but when I started to struggle with specific things, the teachers thought I wasn't trying hard enough and would get angry with me, whilst I was stumped as to what the problem was. From experience, that sort of thing needs to be addressed, as it can result in frustration and under-achievement (although I did better than most of my peers), as well as anxiety and depression, and I'm proof of that. Thankfully, you've already recognised these things in your daughter, so I'm sure you'll be able to counteract any problems that she may encounter.

We know our daughter's really smart (I'm not so sure about the teachers), but her output is average. She has concentration difficulties and takes ages to complete anything, especially if it involves copying from the board. She's been placed in the middle groups for reading and maths, which is not a true reflection of her capabilities. At the moment, we're a few months into a 2 year wait for autism assessment. The speech and language therapist we saw thought she may have Aspergers (and this is what we and the teachers think too). I'm concerned that the teachers think she's not putting in enough effort, but she tells me she tries very hard and I believe her. We have the parents evening next week, where we'll be speaking to her P2 teachers for the first time. So I'll reserve judgement about how they see her until then.

Good luck

Not gonna quote your whole brick of text- LOL- but your daughter sounds A LOT like what I was like as a kid. My parents would openly let me know I was weird, but only thought I was "different from my brothers" and creative. When I was in elementary school I actually developed some motor tics. I got taken to a bunch of specialists, who couldn't diagnose me 100%, but said I probably had Tourettes. I don't have these tics now, but I do other stimmy-type things.

Anyway, I was never formally diagnosed with AS. The topic of Asperger's didn't even enter my mind until about 2 years ago. I read everything I could find on the subject and now I've finally decided, after much deliberation, that this fits me better than anything else.

If you can afford it, why not get your daughter tested?

In Hungary, it's still very difficult to get diagnosed even for children who desperately need it. Only severe cases with thoughtful parents with the luck of having come across AS/ASD/ADHD have the chance to get through. I see that any lack in development of children in the area of socializing/attention focusing/hyperactivity gets the ultimate solution: delayed admittance to school (let the kid spend one more year in pre-school). I fear this is the worst that can happen, since these kids already know more than their peers, their attention will suffer more at classes that may appear meaningless to them. I expect them to encounter with even more behavioral issues because of it, just as I did.

Overdiagnosis would be a step forward from the time when I was a kid and...

THERE WAS NO DIAGNOSIS!

The only thing close to it was different people noticing the same sets of behaviors in different situations.

Perhaps as a result of that, I feel it seems unwise to write people off as just some sort of weirdo, dork, or goofball. Suppose that person really does need help and never gets it, or never finds a supportive environment because s/he was written off as just a basket case or weirdo? It seems especially cruel when the person who is writing someone else off was blessed to be diagnosed.

The best thing is simply to focus on oneself and be a help to others by sharing one's own experience.

I still wonder how different things would have been if my Grandpa and his family hadn't fled Hungary during the war... I doubt I would have been diagnosed. Probably would have been thrown in a hospital or something!

I do not think Asperger's is especially over diagnosed. ADHD and dissociative disorders are MUCH more commonly over diagnosed. I think where I see a bit of over diagnosis is with low functioning intellectually impaired children that get an autism label instead of intellectual impairment. Yes, it is possible to be both, but it is also possible to be intellectually delayed (no speech, few connections to the world) and NOT be autistic. Autism is not synonymous with ID. I think also parts of Asperger's are symptoms of being a child. ALL children benefit from routines and many other things that benefit Aspie kids. Many, many non-asperger's children are sensitive to lights and sounds and they grow out of it (and a few don't). Asperger's kids take routine, interests, and sensory issues passed the norm. I think when making any diagnosis you have to be careful and see the cause behind all the behavior. It is not fair to pick up a few anomalies of a child and simply put a label on them.

Then of course we have the opposite problem too where people who need a diagnosis can't get it.

What are the latest stats? 1 in 70? So out of 1000 kids in a particular school, statistically your should have at least 14 kids or so on the spectrum. The running statistic is 1% of the total population is on the spectrum. Do you believe you are seeing more than this? It wasn't so long ago that you never saw a kid on the spectrum at all - because the lowest functioning kids were instiutionalized and out of public view. The higher functioning kids were just 'the weirdos'. Or were you generalizing because you know this one girl whose dx you question?

I do not think I was generalizing actually. What I was saying is that we should not generalize. All I did was state a trend that I see psychologists moving towards and that is to label more intellectually impaired children as autistic. I was not saying in any way that I disagree with anyone's diagnosis. I stated that I did not feel that Asperger's was especially over diagnosed. It is great to see kids on the spectrum getting to fully participate in the world as opposed to being in institutions. Certainly we should be seeing a rise in autism diagnoses as more HFA/ Asperger's kids are being diagnosed.

Also 1 in 70 is not 1%. I think the current rate is between 1 in 100 and 1 in 120.

Autism Speaks stat - 1 in 70 (ish)
CDC aproximation around 1%.

Bottom line - no one still knows for sure. We are talking theoretical statistics.

Sorry for the lack of clarity there...

(I was also addressing the OP, nika... not your post specifically... sorry again.)

Perhaps this question does not make much sense - after all, there is not any objective method to determine if someone have AS; for all practical effects, "having AS" is equal to "having the symptoms that in the DSM/ICD/Gillberg are associated to AS".

Then, what reaaly means "overdiagnosis" in these case? People being diagnosed without having the symptoms? I doubt that any doctor will do that. People having the symptoms but for other cause? But, like I said above, if you have the symptoms, you have AS (unless you have a more severe condition, like classical autism or schizophrenia).

Perhaps the doctor overlooked contradictory evidence or perhaps the doctor has AS as a pet diagnosis? You know how some doctors will label anything that resembles hyperness as ADHD, what if there's a doctor that tends to see anything as being socially withdrawn as AS and has, say, an affirmation bias in supporting their diagnosis? This is especially true for the doctors who have stereotypes in their mind and a fairly vague notion of what the DMS criteria means in real life. The criteria is pretty open to interpretation.

People get misdiagnosed. Sometimes people get diagnosed over a few symptoms. On another forum, there was someone who said he was diagnosed with it and he had done his research on it and concluded he doesn't have it. Why did they thought he had it when he was a kid? Because he didn't show empathy so they assumed he lacked it, he just didn't care he said. Also he would say inappropriate things and he knew they were inappropriate. So he got diagnosed over those two? Those are not symptoms. It was just assumed he didn't know they were inappropriate.


People who are not qualified to make the diagnoses are more likely to misdiagnose. If someone doesn't know much about AS and think a kid may have it, they are not qualified to make the diagnoses. That is why I think parents should always have a professional, someone who specializes in it, to make the diagnoses.

There are other conditions out there that share the same symptoms as AS but are they really AS symptoms? So many conditions overlap so they mimic the AS traits.

Yeah, they just callously say, "oh she's just weird," or something horrible like that. People are so bad.

Well, as far as I can tell, they typically don't get the treatment they need at all.