Should individuals with Aspergers be diagnosed at all?

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I was thinking about this the other day. As there are no groups anywhere near me for AS adults I tried contacting a parents group. I spoke on the phone to a mother who was quite rude to me. She asked me why I thought I had Aspergers, which I think is an extremely personal question, and then said she thought I must have it extremely mildly. Then she said that if she thought she had Aspergers, she "wouldn't go around telling everyone", which made me feel very embarrassed for having told her, she obviously thought less of me as a result. She said her Aspie son spent most of his time trying to keep the Aspergers secret from people.

I wondered then what other WPers think of this. When I was a child, in the seventies, the term Aspergers Syndrome didn't exist. Nowadays, some children get diagnosed and some receive some treatment which may or may not be helpful. Adults mostly don't - and maybe don't want to either. But is it right to inflict on children a diagnosis which adults would not want? Would it be better to set up the environment in schools so that the odd kids can be odd safely, and give all kids lessons in behaviour and life management and so on? Surely all children would benefit from lessons in social skills and emotional control? Are there any benefits to diagnosis?

Reactions like this from other people make me angry. In fact, it's probably not her son that's trying to hide his Asperger's from people, it's her by the sounds of it. She is the one who is ashamed, and is probably feeding her son crap about what a bad thing it is so it must be hidden. The types of things that you 'wouldn't go round telling everyone' were if you were a convicted paedophile, rapist, murderer etc. To then turn round and treat Asperger's in the same way send out the wrong message completely. Having Asperger's should not be some kind of taboo or stigma, but I fear it sometimes treated in this way. She should have been more understanding towards you than she was. I personally don't see there being anything wrong in diagnosing children with Asperger's providing these children actually get some guidance as to how to develop alongside those that do not have Asperger's, but then this is where the system completely fails us and continues to do so, especially if you are an adult with it. You are just ignored or consigned to the scrap heap.

I agree. His mother is in denial of reality, pure and simple - and it's more than likely that her son will grow up to hate himself and seek refuge in self-destructive practises like binge-drinking and drug addiction as a result of her ignorance. I see no reason why individuals shouldn't be diagnosed if it helps them to access the services they need to help them find work and a supportive network of friends

I agree that in an imperfect and prejudiced world it's probably prudent not to tell more people than necessary that you have it - especially NTs - but there are some situations in which it is necessary. Moreover, I can't see any harm in telling other aspies that you are AS - it's helpful for building who understand what you're experiencing and are in a position not to be judgemental.

It gives the government a reason to pay out disability checks for adults; they won't do it without a label (here in Oz, only 12% of individuals with AS actually work).

For children, it helps with educational allowances. Specialised education will equate to the individual with AS doing the best they can, and without such, oftentimes the high cognitive ability of many goes to "waste". Plus, if peers know that there's a medical reason for why this person behaves as he or she does, they'll less likely bully them (teachers will be more alert and possibly protective too).

Allowances are the treatment if they're needed (they usually are), as it's neurological/structural in origin, rather than neurochemical and emotional like mental illnesses that can be treated via medication and CBT.

The benefits far outweigh the negatives if you're affected by it to a disordered amount (it's why it's called Asperger's Disorder, not Asperger's Daffodils and Differences).

She sounded skeptical and against the self diagnosed. I am not against the self diagnosed but I agree people shouldn't say they have AS if they aren't diagnosed because what if their self diagnoses is wrong and they have something else that shares the same symptoms as AS. I don't take that person seriously about their condition if not diagnosed because I know maybe they have it or they don't. Sometimes it's obvious they do just by things they say about themselves so I do take them seriously.

Last edited by Spokane_Girl on 15 Aug 2009, 9:25 am, edited 1 time in total.

I wasn't diagnosed. It was just being recognized as I was a kid, if I were a kid today, I probably would be.

How would one attempt to hide it? When I was in elementary school, everybody knew who I was. I was the one everybody hated, the one everybody made fun of. They made faces when they saw me, wrinkled their noses, said "eeww!" when they looked at me. How would I possibly have gone about hiding that??

I'm 61 and have been diagnosed only for two years. I am not sure if I would have told many if I were diagnosed earlier because it's almost like some people go, EEEUUUUUUU. I don't get that at all either. But I know it took a lot off my shoulders knowing that yes there are reasons I behave the way I do and always have and while I pass for odd or eccentric, as I get older it's very apparent something is major different with me. I'm not growing up for one thing! I have several older friends, over 70, that I meet with monthly. I had done something really weird and finally told one I was aspie. Turned out her granddaughter is also and she asked me myriads of questions and advice and wanted me to speak to her daughter for help also. It was a pleasant surprise. Then she told the rest of the group and I was at first stunned. But the response was incredible. They all love me and look out for me and keep connected. I think I"m rather lucky! On the other hand, my closest friend that's my own age, stepped back as though I had a virus and things are never going to be the same again. She would rather I just buck up and be normal and force myself to act like normal people act.

So I think all things considered, if I were school age and programs were available to help, I'd want that. As a young adult, I'm not sure I'd tell anyone other than those that would have to know. As an older woman, I really don't give a crap who knows! There is a bit of freedom that comes with age! Of course I don't tell everyone I meet, it's not really anyone's business unless you want to share that information. But for me, the diagnosis was sort of confirming that I wasn't completely insane, but just different. And if you ask me, in a good way!

Hiding it would mean not letting anyone know you have the condition so you continue having people think you lack common sense or you are rude or not smart or a smart ass, anti social, shy, etc. without even giving them an explanation by telling them you have AS.

I have a problem with 'mild' AS because the term covers AS and non-AS which I think is very problematic.

What is mild? If mild's 'almost normal, never real problems, just a bit different in an uncool way that some people roll their eyes about' then I have little patience for that.

People are all sorts of shy, annoying, weak, stupid, slow, lazy without having a disorder because not every not-so-useful human traits is clinically significant. A disorder is a disorder because certain differences and difficulties are outside the range of normality to a level that is no longer manageable and impairs the quality of life greatly.

Think of how you can get along being unable to speak well and have a happy life, but if you do not use different (what is currently called 'special') ways to cope in out society such as for example sign language you will have an immense problem living in our society.

Some people may have one of the underlying neurobiological disorders that are currently often diagnosed as AS but do not meet the behavioural criteria for AS.

AS however is nothing more than the behavioural criteria in 2009. The underlying disorder(s) has no name yet and is currently not the same as AS. It may be in the future, it may not be. We do not know, we can only assume based on personal expereince.

So I really, really hate how AS is trivialised.

Trivialisation is why people have the nerve to tell some people with AS that they do not have it because of their real difficulties. (On the other hand, being overly rigid and claiming one must be completely unable to function leads to that the milder cases who face difficult problems are also excluded from AS)

Come on, people indicate things such as that you must be a manipulative, gross bastard trying to use AS (which means you should be perfectly normal, just a little eccentric but certain not in need of real help) as an excuse for pretending you/you're

unable to speak now
don't injure yourself and others on purpose
crying and moaning about breaks in routine
don't understand this social situation

when you're perfectly able to do all these things because AS (unlike real autism) means you cannot have any of these! Alternatively people also say that this evidence must mean one is misdiagnosed and should be diagnosed with some other PDD.

I don't think anyone has to have a horrible time and can't be proud about their differences if they have AS. I just do not think that always being normal, having normal problems that are defined as normal because they are manageable fits having what we currently understand as AS.

If somebody could always hide their AS then they plainly do not have AS as it is currently defined. At some time of their life, often their early childhood what AS describes as behavioural criteria must have been obvious at some point.

Having an untreated disorder and being easily cope with one's problems that are so insignificant that they have never been noticeable for any time of one's perfectly normal life doesn't work together for me?
If you've always had manageable problems like anybody else that never prevented you from having a happy life then how is that a disorder?

If people claim that it's a slap in the face for anyone who cannot just 'be normal' or wasn't normal before they learnt to cope with their once unmanageable difficulties. People start questions and get suspicious and treat you funny if you are unable to manage something that they know isn't a problem for others. It#s the very thing that happens currently to most people with a disorder. People don't understand how someone can be that different. If people thought AS was perfectly normal it would be the same situation then for anyone who isn't perfectly normal but has AS.

The people who coped with some of their AS symptoms is often forgotten. Seeing how there may be several underlying disorders that can present the very way the criteria of AS describe there may as well be people who truly fit the criteria once but do not any longer.

These people had at one time of their lives significant problems that they couldn't just 'cope' with as with perfectly normal problems all healthy, normal people have. That is the disorder AS even if it's gotten so much better now.

Maybe what AS criteria are lacking for these people is a criterion similar as to the ones that appear in tic disorders. As there are small periods of time during which perfectly normal people also have unmanageable problems (as part of their development) it might be able to differentiate AS from that by saying 'these behavioural criteria were fulfilled (including that the person did not meet differential criteria to be sure that this behaviour wasn't just caused by a problematic social situation) for a period longer than 6 month/1 year/3 years'.

And, this is a rant. I noticed.

This made my morning for some reason.

Sora:

From my diagnostician I understand that the problems must be pervasive in order for a diagnosis to be there. I.e you must have behavioural differences and problems in childhood as well as currently, even though they may manifest differently. In my case, I apparantly come across as more or less NT when I'm out and about, but it takes a lot of work for me to keep up, and to keep up the act. So even though I'm not as odd socially now as I once was, I still have AS, I can just manage better now. But if I now longer had to work my ass off to come across normal, I wouldn't have gotten the diagnosis, at least not from this psychologist. The symptoms may vary and sometimes be less severe, but they're always there. (I'll never be normal and never be able to relax )

My view is that unless one has a professional DX of AS it is wrong to try to use AS in the community as an excuse for things or to try to get special treatment. One of the problems with AS and the ASDs is that the conditions are defined by the "symptoms" rather than being defined by some biological or chemical process.

A condition such as cancer or lead poisoning can be defined and understood in terms of a chemical or biological process or state. Both of the conditions which I mention can lead to a range of symptoms. The symptoms of lead poisoning may differ from one person to another, I suspect that Nero & Caligula were bonkers because they had too much lead in their bodies but it is unlikely that a randomly selected person with lead overload will do the mad bad stuff of Caligula. While the exact symptoms which appear may differ from case to case, it is still possible to fall back on a physical examination or lab tests that shows if a person has or has not got the condition.

But not clear consensus exists as to why and how AS, autism and related conditions occur and let alone how we can test for them by means of a brain scan or a blood test. It is possible that a series of very closely related conditions (or even conditions which are not mechanistically related) may exist which are clinically so similar that they are currently lumped together as AS. I suspect that in years to come when we have a better understanding of the chemistry and biology of AS that a reclassification will occur.

Currently as I understand it AS is diagnosed by looking for a series of symptoms in a person and ruling out some other possible conditions. So as a result it is possible that several unrelated conditions could be lumped together into AS. I would also say that sometimes it is not possible to clearly differentiate between AS and some other ASDs. Some of the people at WP are on the borders between two ASDs.

If you read the book "Prozac Nation" by Elizabeth Wurtzel you read the idea which she suggested that a greater understanding of the chemistry of depression lead to a change in the way that the medical profession thought about depression. This is an example of what I suspect may occur in the next 50 or 100 years with ASDs.

I think i would liked to have been diagnosed as a kid. Instead of feeling confused and alone at school, it seems like then i could have gotten some assistance or guidance and developed a little better socially. Comments like "why aren't you talking to anyone? they're not going to bite you" or "why don't you smile more? cheer up!" from kids and teachers weren't exactly all that helpful. After Middle School i knew that i had anxiety problems and depression and was on medication for it, so that was something... But it only addressed the nervousness i had with social interactions, not the cluelessness. It's like "okay.. yeah, so i'm not afraid to talk to people now... but i still have no idea what i'm supposed to say to them... I think i'll start randomly babbling about something...." Heh. So, at least i can talk to people now, even if i don't understand everything all that well. I just think it could have all worked out a little better if i'd received a small amount of help in the younger years at school and such. I think that being overbearing on a kid can probably get them to resent their diagnose really easily, though. It seems like some parents treat their AS kid like they have more severe autism than they do, and in effect not allowing them to use their strengths or learn to function. So, i think it can have an opposite effect too. I just wish i'd gotten a small amount of help with social things and managing school, not teachers over me saying "OMG you have AS so i'm going to do all this stuff different with you and single you out all the time!! !"

I wouldn't survive without a diagnosis because I desperately needed access to therapy.

if you do not have aspergers in writing then people keep trying to tell you and all other people about you that you are a psycho criminal and this is not true

there is a difference between aspergers not understanding how to do things and a psycho criminal that does things for fun and we need the words on paper to force people to see our problems for what they are and not what they think they should be

No.

I don't think it is.
From my own experience, my label made people even more confused about me than they were before. It didn't really help in a productive way, however well intentioned it was. My social difficulties and fear of large groups of people were very real though.

I think it could've all been dealt with in a far more balanced and sensible way if the diagnosis hadn't been so negative. People fear and stigmatise the negative. There were difficulties true, but I don't think that these negatives were the full story. People glossed over so much of the good stuff when they saw me because they just saw a mysterious, frightening label that they either didn't understand or weren't really prepared to fully understand.

People were probably doing the best that they could with what limited information they had at the time, which to be honest, wasn't a lot.

I think that the child should have a say in the matter unless the test can be backed up by proper provable physical, medical evidence or a brain scan. Something tangible and measurable is needed for this to be taken seriously.

If people don't understand and you don't understand the diagnosis as an adult, what's the point of having it, if it's just going to be used to stigmatise you and make your social difficulties even worse?

That's why people told me to ditch the label or keep quiet about it.


If I mention the label, people tend to "run for the hills"!




Definitely.
I would've benefitted from this.

Quieter environments with less overcrowding with less enforced high social expectations to join in and talk all the time.




Yes. These would be very useful and beneficial for everybody.

These are good, general, useful skills to have.

Emotional control is something that no-one ever really taught me.
To be honest, some families aren't very good at emotional control or trying to see things from someone else's perspective. When young, I did used to emulate the emotionally erratic behaviour of an adult carer I was close to because I didn't really know any better at the time.

Meditation would probably have been very useful too.