...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.

When my son was very difficult at primary school our senco suggested he had autism. As I have two relatives with severe autism I thought she was nuts, as ds was nothing like them. That was largely because although I understood how they presented I didn't have any knowledge about the spectrum.

Anyway he was sent off for a whole bundle of assessments, which is the appropriate thing to do when a significant diagnosis is a possibility. After the assessments were completed we had a better picture of a quirky generally NT child with some AS traits and dyslexia. His school records will still have that comment from the senco but that wasn't a diagnosis, just a note, a description of his difficulties at the time.

It is irritating when people claim disabilities without diagnosis or any real understanding as to what it is they are claiming. The overmedicalisation and overdiagnosis of children who may or may not be on the autistic spectrum in the States is concerning but is driven by a very different system than the UK where getting a diagnosis is time consuming and difficult and support completely inadequate.

i have known over a thousand people with the diagnosis of ASD, it is not an insignificant sample size.
I'm sorry but this is complete bunkum. I have been involved for thirty years and have not met a thousand people. And before you say well, you're in London. I moved from London.

Well, I have fostered more than 10, I have liased with other foster carers who have fostered more than 10, I have worked in an ASD school with 400 children in it at any one time, and have known all of them, and have returned to the school a few years later on secondment, when there was at least 300 new students there, I have had at least 4 or 5 in my tutor group every year for the past 7 years, I have worked in the ASD class of the school, in which I have met at least another 10 every year for the past 7 years, and I know quite a large number privately, so yes, over a thousand is probably accurate. Why would it not be?

Okay, and you consider what percentage of this 1000 to be 'over diagnosed'?

And, you have come across these people, you haven't actually known them all, in the full sense of actually knowing somebody.

Isn't the elefant in the room that Caron expresses the prevailing view in the society, which is that Aspergers and the spectrum is just Bad character / naughty behaviour / bad parenting whilst the "real" autism means being "really mentally disabled", which meens being a sort of vegetable needing to be cared for in the asylum comfortable forster place, and thus obviousely nothing to be proud of, not something worth going arround telling people...

That is why the dillema whether to disclose or not disclose really exists, wouldn't you agree? You are damned if you do and damned if you don't because of the prevailing discriminatory attitudes not being discussed and challenged.

What Caron expresses is the denial of autism's internal mechanism within the individual, the common mechanism that makes Aspergers and Kanner Autism part of the same spectrum. By denying this, you deny the whole person.

How can Caron be allowed access to vulnerable children? Rotheram council was in denial about child abuse, is Caron's place of work safe for children (if even fraction of what she says were true)?

Hi Statisically . I agree with everything you say about 'adapting' to the circumstances or surroundings . However, the mask you are wearing eventually slips at first 'slowly' barely noticeable then after all the effort you put in the differences and difficulties become more profound each day.

This is why I will 'probably will be never able to work for someone' other than a member of my family in a job that is 'Specially Designed' for me allowing for my differences. That is not to say I could not be very good at a job/career , just that no employer (why should they) would accommodate me or the vast majority of autistic people.

That is the truth and probably the reason why the majority of high functioning autistic people get put in to the 'support group' on ESA.

Even a Government hell bent on destroying the 'benefit system' and looking to get 'everybody of their books' acknowledges how difficult it is for autistic people to find employment .

It also shows that anyone who has been diagnosed as autistic whether that be high functioning or in the form 'traditional' should not be denigrated.

That's exactly it smokepole. You can't keep it up forever - however many circumstances you "train" yourself to cope with there's always a new one that shows it up. And personally I find it utterly exhausting.

I would say (obviously I don't know the extent of your symptoms) that whilst it's been hard at times, I work for a really big company and they are very supportive. Good companies are out there and not always where you would expect - I just wish that there were more of them and that they were easier to get in to. Sadly many aren't interested though .

My ds is in year 7 and is almost 12, he has aspergers.
When he was at primary school in year 5 and aged 9 he decided to tell his classmates.
The reason was mainly because a few of the children didn't understand sometimes when he was anxious or was obsessed with certain things.
He stood up in front of his whole class, explained his condition and then answered questions( his friends were intrigued, interested and very understanding)
My ds was only diagnosed a few months earlier and took it all in his stride.
I hope that as his friends have all moved on to various secondary schools they have a better understanding of aspergers and a more sympathetic attitude to children who otherwise may be seen as "different" or "weird" as my ds was referred to several times.
After his little speech, ds wasn't treated any differently but there was a difference in how HE felt, accepted.
I was so proud of him:)
It's nothing to be ashamed of op.

statistically a lot of what you said up thread rings true with me. I was in a situation with a new work colleague recently. Previously I had worked with the same colleagues for a number of years, so when this new work colleague arrived I was already struggling with the change.

We got off on the wrong foot as I tried to apply my knowledge of being 'assertive' and ended up a sobbing mess in the staff room complaining to my usual colleagues. Within a few weeks of starting my new colleague had complained several times to our superior and I took the feedback and tried to correct it.

It ended up with our superior sitting us both down and saying 'look, what's happening here?' New colleague said that I was obstructive and unhelpful, it turns out that each time I had received feedback I had over corrected- and she thought I was taking the piss and doing it on purpose. Eg she complained about one occasion where I had taken my initiative and done something 'wrong' (ie differently from how she would do it'- I over corrected by never taking any initiative ever again and checking before doing anything work related.

When I explained a little about my mental health issues (diagnosed with anxiety/depression, awaiting referral for possible ASD) her attitude towards me completely changed.

All of a sudden she was giving much clearer instructions/feedback instead of assuming I would understand what she meant. And when things did go not quite go according to plan, instead of thinking 'well, crohnically did that on purpose because she doesn't like me' she spoke to me and together we worked out where the communication had gone wrong.

And of course, almost the whole time I kept up my mask at work, and dd and DH bore the brunt of my snappiness and sobbing meltdowns. I even let my mask slip a couple of times at my in laws because it was just too much work keeping it in place.

YY to over correcting. Bane of my life!

I also find if I explain (to the right person) I have some neuro issues and anxiety so do "over correct" if criticised too vaguely it helps enormously. Otherwise they don't realise and just wonder why I zig zag from one extreme to the other.

As an aside, I am very interested in the story of Caronaim's friend, who shows no signs of AS and doesn't want her diagnosis even though she has it. I wonder why she went through the process? How puzzling.

And talk of being "offered a diagnosis" and refusing it - maybe it's me! but if I was told I was diabetic or epileptic (for instance) how on earth could I justify saying No thanks, I don't want that one?

Caronaim's experience of Autism seems to be somewhat old fashioned, ie autistic people rock in corners and cannot connect at all.

Iamcuriouslyskanky - I get the impression that the diagnosis is not always seen as helpful, although I'm not entirely clear why. I'm sure I've read something Simon Baron-Cohen wrote which suggested you should only seek a diagnosis if it is causing you difficulties in your life?

There are probably plenty of people with pre-diabetes (not sure that's the correct term) or the potential for epilepsy who are not diagnosed, as it does not (yet) cause them any problems, so perhaps that's the better analogy?

I think some people (adults rather than children) might feel that a diagnosis would make them feel worse - like they're "not normal" or have "something wrong" or might fear the stigma of a label. Whether to go for diagnosis is a hugely personal decision and depends so much on the impact on your life - not just practical but on how it will make you feel and view yourself.

When I went for diagnosis, towards the end of the appointment I was asked if I thought diagnosis would help me. For me the answer to that was a definite yes...but it wouldn't be for everyone.