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AIBU?

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Original poster

...not to tell people I have Aspergers

188 replies

KerPlunkKid · 05/02/2015 13:50

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.

OP posts:
ThereIsACarInTheKitchen · 06/02/2015 08:56

Just to add to what everyone else is saying, ime, professionals don't just diagnose anyone with ASD. I was diagnosed nearly four years ago and believe me, it was not easy to get my diagnosis, in fact it was bloody hard. And I do know people who went to be assessed who I thought might have a good chance of having it but were in fact told they don't have it. So no, I don't believe it's easy to get a diagnosis at all and I don't think they would diagnose just anyone. Imo I think professionals wouldn't diagnose anyone unless they were pretty damn sure they did actually have ASD.

I'm also not sure if I agree with the "everyone is on the spectrum" argument. Obviously everyone will have quirks or things they find hard but I'm not sure that's the same as actually been on the spectrum. Correct me if I'm wrong, but I always thought the spectrum was a spectrum of people with autism. Certainly not a spectrum which everyone fits on to.

Dawndonnaagain · 06/02/2015 09:06

Caron Your professional qualifications with regard to ASDs are?

Thought so.

Dawndonnaagain · 06/02/2015 09:07

Kerplunk
I have Asperger's Syndrome and I'm proud, as is dh, ds2, dd1 and dd2.

fanjoforthemammaries7850 · 06/02/2015 09:11

We are definitely not all on the autistic spectrum.

fanjoforthemammaries7850 · 06/02/2015 09:12

OP tell people if you want to. Or keep it to self. But don't be dictated to by other people about it. I personally would play it by ear and tell people if i felt comfortable with them, if it were me.

fanjoforthemammaries7850 · 06/02/2015 09:14

I think caron was just trying to say ASD is a real and disabling condition and wasn't meaning to insult people with ASD by the way.

fanjoforthemammaries7850 · 06/02/2015 09:14

(Fwiw I am NT AFAIK)

YouTheCat · 06/02/2015 09:19

Dd was diagnosed with Aspergers at 18. I probably have Aspergers. My dad pretty definitely had Aspergers. Ds is at the severe end of the spectrum.

Tell people if you think it will help you and help them to understand.

And whoever it was spouting off about it being soooo easy to get a diagnosis of autism these days - bullshit... utter utter bullshit.

IsItMeOr · 06/02/2015 09:42

fanjo I'm struggling to agree with you on your interpretation of caronaim's comments.

To me, being "selfish" implies that a choice is being made. When DS (AS-type of ASD) is struggling to fit in with what we/school/the world want him to do, it is not really a choice, as the reaction triggered is his fight/flight one. All we can work on is trying to catch the anxiety as it is building up before it hits that trigger, and put out a call to his analytical brain functions before they shut down.

I do not think that makes DS more selfish. It means that he has difficulties in the areas of frustration tolerance and communicating his feelings and this cuts off his problem-solving abilities.

JackShit · 06/02/2015 09:42

'I have Asperger's Syndrome and I am proud'. Confused

Is it a badge of honour then? I have epilepsy. Should I be proud of that? Very odd.

I know loads of people who claim to have Aspergers and you would never know as their behaviour/ability to express shows no clues at all, so be prepared for people not to really care either way op.

I think Caron is pointing towards the 'trendy' element of certain conditions and the possibility of true sufferers having their illness minimised.

fanjoforthemammaries7850 · 06/02/2015 09:46

Itisme. .sorry..I should have said.

I was only addressing the "ASD means there is something very wrong with you" comment

fanjoforthemammaries7850 · 06/02/2015 09:47

I was quickly reading on bus and thought that that had seemed insulting to people.

I agree it is a real condition and not something trendy or selfish of course.

HatieKopkinsgob · 06/02/2015 09:49

Wow Caronaim. Please tell me you weren't a Senco.
Your posts are insulting.
So it's very easy to get an assessment then a Dx, I should have consulted you instead of a peadiatrican.
Do you have an opinion on how easy it is to get DLA blue bage and a place in a ASD educationAL provision, I've clearly been battling when and where I didn't need too.

As for if to tell people, if it helps you then mention it. Making the judgement on if you tell people is hard as you can't then unsay it.their response will help clarify who to avoid. My children have ASD Ds tells people he has Awesome autism, that way the other person is very certain that it's a positive Dx. It works most of the time.

fanjoforthemammaries7850 · 06/02/2015 09:51

I don't agree with her other posts either.

HatieKopkinsgob · 06/02/2015 09:52

If you've met one person who has autism, you've, met one person with autism.

IsItMeOr · 06/02/2015 09:57

fanjo sorry, I wasn't meaning to have a go at you! I certainly didn't read your contributions that way, I thought you were just trying to help express a kinder sentiment potentially behind caron's comments.

I should have been clearer that I don't agree with the sentiment that any form of disability means that there is something wrong with you. It is a different experience of normal, which may have a range of challenges that go with it. And, particularly where those barriers are imposed by society, we have a duty to understand that, and to support people to overcome it. But this is something I have found it difficult to get my head around (still learning!) and I have sympathy for others who are also on that learning curve.

fanjoforthemammaries7850 · 06/02/2015 09:58

No its my fault Itisme. I wasn't clear at all. My bad :)

Rumours · 06/02/2015 10:22

Jackshit why not be proud of having aspergers? Like I said upthread, having autism is part of you as having blue eyes or freckles. If I had lovely shiny glossy brown hair I would be proud. (Probably could've put that better).

I have two boys, I am proud of them, they also both happen to have autism and the way they deal with it makes me very proud of them, and they should be proud of themselves.

Some of us are neuro-typical, some of us are neuro-diverse.

Dawndonnaagain · 06/02/2015 10:52

Jackshit Yes I am proud. Whilst my AS gives me problems in some directions, it is a positive and useful trait in other directions. Why the fuck shouldn't I be proud. My AS is one of the parts of me that got me my career, my family etc.

thedevilinside · 06/02/2015 11:46

Thanks Caron for making me feel even more shit about myself, I just love having no friends, children not being invited for playdates, (both on the spectrum too) oh and the severe emetophobia to contend with, I also love ripping my feet until they bleed every night, it's stimming, it hurts, don't know why I do it. I haven't even got a proper diagnosis, just residual aspergers, whatever the fuck that is supposed to mean

Original poster
KerPlunkKid · 06/02/2015 11:50

Devilinside please don't take on what Caron said xxx

People have no idea do they x

On the plus side smile carons made herself look a prize idiot!

OP posts:
Dawndonnaagain · 06/02/2015 11:56

thedevil Check your messages.

templeofosiris · 06/02/2015 12:06

I was diagnosed with autism aged 32 a couple of years ago. I don't think it's something I feel proud about, but I don't feel ashamed either. But I only tell people on a 'need to know' basis. I get various disability benefits/concessions so obviously some professionals do need to know, and I'm very pleased that I have it on my record so that it offers some protection. I'm doing a DLA renewal at the moment and have got the highest rate for the past five years and hoping to continue to get that. I find it sad that some people try to hide their disability or not even get it diagnosed and miss out on things like that. I have told my DH but not my siblings or parents - their understanding/knowledge of the topic is quite poor and I find it tiresome to have to explain it to people.

CrohnicallyCold · 06/02/2015 13:47

isitme that's what I've been trying to tell DH about the fight/flight mechanism. I don't have a diagnosis yet but I do have an initial assessment next week. The thing I'm struggling with most at the moment is my reaction to change. This could be an actual change of plans/routine, or something as simple as someone telling me X when I thought Y. Depending on the circumstances I either run and hide, go 'into my shell' (don't talk/move/respond for a short while while I process it) or I become upset and agitated.

But DH can't understand why a 'positive' change (for example, finding out that someone has come home from hospital earlier than planned, so while I thought they were in hospital they were actually at home) can make me upset, and I can't explain myself clearly, so I keep finding myself in the same/similar situations.

jackshit you would probably think the same about me. You have to know me very well before you could see the subtle signs that I am not coping. And the couple of occasions when I have let the mask slip in public, I always have a good excuse (eg stress/illness/medication). However, I take the stress of keeping the mask on out on those close to me at home.

smokepole · 06/02/2015 14:22

There is no such form as "mild" autism as my Consultant Psychologist said Aspergers/Dyspraxia in every single way is not mild .

One thing that does really concern me though, is that all the adults at my Autism support group are all 'Middle Class" with supportive or professional families no doubt offering support and help . It seems that adults/children from disadvantaged or poor backgrounds may not be getting diagnosed. The fact that these poor kids are not getting the help they need will no doubt lead to expulsions from school and ultimately in to the criminal justice system. This is something that needs addressing , it does seem that HFA is something that is only diagnosed in people who have supportive and 'educated' families.

Finally the diagnosis is important because if you find you self out of work, the likelihood is you will be put in the ESA Support group. This eliminates the need to take part in work focused interviews which for anyone with Aspergers/Dyspraxia is 'terrifying'.