...not to tell people I have Aspergers

[KerPlunkKid]

Background: Female mid forties, diagnosed a few months back.

I have told a brother, sister and my DH. They have been ok.

I recently told my other brother and SIL. SIL just did not seem to register at all, whilst my brother whispered to me "why are you going round telling people you have a mental illness" I replied I have only told family and that Aspergers was not a mental illness but a neurological difference. My brother is a mental health nurse btw.

Now I'm thinking whats worse just leaving people to think Im odd or telling people I have Aspergers.
Would people whisper poor DD for having a mum like me or kids mock DD for having an Aspie mum?
Would work cruel or kind?

There seems so little awareness or understanding.

I'm in London Blankgaze. I would say there is probably 10? of you on here who disagree with me rumours, but that is the nature of the thread. In another place, eg the staffroom tomorrow, there are likely to be 30 who agree with me, many of whom have worked in ASD for decades.

I am listening to you. I'm not saying you have convinced me, or not convinced me, I am more confused, because your experiences and mine are just not matching.

I really don't think the diagnosis would come from just your input. In my area it is a multi disciplinary team as I said before. So your comments would have been noted and the professionals investigating would have taken that and their other findings into consideration. Do you really think a diagnosis could've been made from just your input

Again, I haven't come across a staffroom in which that is the situation, London or otherwise. I wonder if they're agreeing with you because it's perhaps easier than trying to explain to you.

Yes, 10 of us and 1 of you. With the majority living with autism day in day out.

You do sound like its easier to just agree with you. Do you get quite opinionated and judgmental a lot? Your colleagues probably agree for an easy life.

I feel I may be deleted soon but im just

no, I didn't say that was overdiagnosis, I was just explaining that the diagnosis might not in fact be long drawn out or detailed.

I have a close friend, for example who is diagnosed as ASD. she doesn't tell people, she shows no signs of it, and she herself says she is quite sure she doesn't have it. This is the sort of thing I mean.

it is not unusual, I know quite a few people who have tried to get rid of the diagnosis, or who have had it taken away.

There was a boy in my tutorgroup a few years ago who kept moving between his Dad and his Mum. Every time he went to live with his Mum she arranged to get rid of the diagnosis, and every time he went to live with his Dad, he got it back.

Does this sort of shenanigans give you confidence in the diagnosing system?

I don't speak much in the staffroom, as it happens. I started this particular job very recently and I don't know many people. I just sit and listen.

This is the first I am hearing of this.
Across all the people you know with asd, do the majority have this 'misdiagnosis' problem? or the minority?

rumours, the diagnosis remains on his file, he was never investigated in any way, simply my words were written down, that is all.

A minority rumours. Most people I have worked with are quite severe, as I said.

Well why don't you question it?

Question the diagnosis that was taken from your comments alone.

Im glad to hear its a minority, and not as common as I feel you are making out. Try and realise that basing your discussion and assumptions on these minorities is not helpful.

There are no professionals involved with this boy, and never have been. the sole medical contact he has ever had in his life remains the cursory examination given when he came into care, which is to look for injuries, malnutrition, etc.

The only medical comments on his file are the descriptions I gave of his physical disabilities and his ASD type behaviour.

Question it with whom? I'm not his foster carer any more.

Does it work though, really? I'm speaking from own experience here but my ASD wasn't picked up as a child (knowledge and awareness has moved on hugely so if I was a child now then maybe it would be.) To an extent I can "act normally" - most people who first meet me would never guess I have autism/asperger's.

That doesn't mean I don't have it, or that my diagnosis was wrong. What it means is that I have been able to learn on an intellectual level what is expected in certain circumstances - I'm an intelligent person, I can read, I can observe, I can be told what works or that "so and so is great at this" and I basically try and mimic. But it is a total and utter front. It exhausts me completely. It's also not sustainable in the long run so in many ways it causes more problems than it actually solves.

So, to give you an example...I can "do" interviews. I have learned what is expected - I know (as a fact, not as an instinct) that I should go in and do x, y and z. I know I will get competency based questions and I prepare more scenarios and possible scenarios than you would believe - and thankfully I have a very good memory so it ends up that I come across very well. I get offered the job. Then I get in to the workplace and it all starts subtly going wrong. I might get on fine with people for the first few days/weeks, but slowly they start picking. They start saying I'm "not proactive", "not chatty enough", "too chatty", "don't volunteer enough" "volunteer too much", "too loud", "too quiet"...yes, very contradictory, because I'm constantly trying to work out what people expect but because I don't have an instinct for it I tend to overcorrect when I get negative feedback and just wind up not fitting in. Every single time. Every single workplace. It's absolutely soul destroying. I'm somehow always getting it wrong.

Now, you might think that just sounds like a "difficult personality" but it's not. It's not that I don't want to fit in, that I don't care or don't want people to like me. I want nothing more. I have spent literally my whole life wondering why I'm getting it wrong, why I don't have friends, what's wrong with me. Why don't I understand? How do other people just know all these things you're supposed to do?

The fact that I can appear "normal" (I hate that word but YKWIM) doesn't mean that my asd is a misdiagnosis or a mistake. It just means that even before I knew I had it I had learned how to hide the worst of it. Only those closest to me (my DH) ever saw the true extent, the whole picture, and the immense sadness and stress it caused. Sadly I suspect that for many of those children being "cured" by being taught how to act normally the same will be true. All they are being taught is that they aren't good enough and that they should wear a mask for every minute of every day of the rest of their lives.

And for me, ASD diagnosis hasn't meant asking people to make massive adjustments or to put up with "bad" behaviour. It's meant explaining to them that a lot of the issues they perceive are just down to me not being able to understand or interpret what they want - if you would like me to help you do X, then don't throw hints and expect me to catch them (cos I won't) then moan that I'm not helpful. Just ask me outright. A lot of the adjustments that are needed from my colleagues are like that - subtle changes in how they work and interact with me, and in how they evaluate me. It's about making them stop and think "hang on, why did Stat do/not do that? Hmm, actually, maybe I should check how she interpreted it."

If no professionala were involved how can he be diagnosed.

I'm leaving this thread now. Thank you for talking to me.

I am not exactly clear, but I will keep a more open mind in future.

Although, when I am with an individual, I am always open minded about that particular individual anyway, it is just when I look at the overall pattern that perhaps I haven't always been.

He can't. I suspect that Caron has misinterpretated that 'diagnosis' going on his files.
As for her friend who shows no signs of ASD, I suspect Caron doesn't live with her 24/7.
This is a nonsense. I have no idea what Caron's agenda is, but it isn't pleasant.

My agenda, Dawn, is to try and make some sort of sense of this whole thing.

Xposted with a lot of people, I started typing ages ago, got sidetracked...

In which case Caron look at legitimate sites, look at the facts and the figures and stop baseing this on your experience alone.

Legitimate sites contradict each other. Training done in schools contradicts sites. ( I was specifically taught in training run by the council to disregard the national autistic society) People speaking on other threads right now are contradicting this thread. i have known over a thousand people with the diagnosis of ASD, it is not an insignificant sample size.

I'm cooking. I will come back later, but it might be much later.