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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
WhoKnowsWhereTheTimeGoes · 08/02/2015 15:38

Neither can I, except to say Caronaim you should be ashamed of yourself for posting such hurtful comments on the thread of someone who has come on here for help in a difficult situation.

Caronaim · 08/02/2015 18:04

ok, I am really sorry, I didn't mean my reply to be hurtful. I appreciate there are people who have genuine problems that may not be obvious. it's just i get so frustrated trying to care for children with severe autism, when so many people seem to have diluted down the definition to the point where it doesn't have a lot of meaning. It is so unhelpful

Caronaim · 08/02/2015 18:08

dawndonnagain, I wasn't advocating attempting to force children with ASD to behave normally, I was explaining that this is the current rising fashion in the states, and will eventually arrive here, they always do. The fact that there are so many anecdotal cases where it has apparently works, to me indicates misdiagnosis in the first place.

Dawndonnaagain · 08/02/2015 18:10

Caron whilst it's nice of you to apologise, you really do have to understand that it is a spectrum, people with AS suffer as much as those with Kanner Autism, it's just that they present differently, it doesn't mean they're not on the spectrum.

Popping on, apologising and then reiterating your argument is not helpful.

Dawndonnaagain · 08/02/2015 18:12

Oh, and I have a) never come across a case where it has worked, or b)found that the more violent of cures have managed to cross the pond.
They don't always, and of course those advocating the cures will claim miracles.

Caronaim · 08/02/2015 18:12

Dawndonnagain, have you never come across a situation where you have found over diagnosis to be muddying the water?

Rumours · 08/02/2015 18:14

caron youret not just hurtful you are talking utter rubbish. You are extremely ignorant! Autism id a huge spectrum. High functioning autism may not be as obvious as low functioning autism, but it is just as debilitating. You have a lot to learn about ASD. I am astounded you work in this field.

Caronaim · 08/02/2015 18:15

It is because I work in this field that i have become so frustrated with what is going on.

Dawndonnaagain · 08/02/2015 18:16

No, I haven't. I have come across misdiagnosis regularly. Asperger Syndrome was, and still is often misdiagnosed, bi-polar, schizophrenia, anxiety etc. It isn't misdiagnosis in this case though Caron, or 'over-diagnosis', it's raised awareness and increased study. I don't actually think such a thing as 'over-diagnosis' exists, other than in the likes of The Daily Fail.

Caronaim · 08/02/2015 18:18

have you EVER seriously come across confusion between ASD and schizophrenia? They are diametrically opposites.

Rumours · 08/02/2015 18:19

I can't see how it can be over diagnosed when it takes a multi - disciplinary team to observe, record, collaborate to diagnose. It is a very thorough and long process.

Rumours · 08/02/2015 18:20

I have heard of adults, more often females being misdiagnosed with mental health conditions when it actual fact its ASD.

Caronaim · 08/02/2015 18:20

dawndonnaaagin, how about a diagnosis being given then a few years later retracted? You must have come across cases like these, it happens fairly often here. Would you say it was a wrong diagnosis, a wrong retraction, or someone who "recovered"

Caronaim · 08/02/2015 18:24

In my experience it isn't a long protracted deeply investigated diagnosis. I had a foster child a couple of years ago who had a lot of health problems. I won't describe them because of privacy. He had no medical records when he was taken from his home, and when I was asked later, I described the problems he had, which included physical problems, and autistic type behaviour. That was all it took, just that one comment from me, for ASD to go down on his records. He went back home, but I still saw him at school. As far as I know he has never seen a doctor since. ASD is still on his record.

Rumours · 08/02/2015 18:26

Was that an official diagnosis or a question ti query asd? Im pretty sure they wouldn't just take your word for it Hmm

BreacaBoudica · 08/02/2015 18:26

Caronaim, you may have a lot of experience of children with classic autism - that does not mean you are qualified to say that a child with hfa is misdiagnosed!

You are ridiculous and offensive and I sincerely hope you learn from the responses you have got on this thread... but I doubt you will.

Rumours · 08/02/2015 18:27

So all the diagnosed children in your care have had a very quick diagnosis? Maybe you should investigate this further as if it's true it isn't best practice is it?!

Rumours · 08/02/2015 18:30

Do you have access to full medical records to the children you care for? I have a feeling you have experienced what you think is a misdiagnosis and you have jumped on that bandwagon and assumed all your charges are the same. PLEASE take note of all the responses here. Asd is a HUGE spectrum and presents differently in different children, even differently on different days for individuals!

Caronaim · 08/02/2015 18:31

i am not trying to be obtuse, i am trying to see your point of view, and reconcile it with my own experiences.

blankgaze · 08/02/2015 18:33

In my experience it isn't a long protracted deeply investigated diagnosis.

What country are you in where that happens?

BreacaBoudica · 08/02/2015 18:33

Well try harder, fgs...

Rumours · 08/02/2015 18:34

Take not of ALL our many experiences and question yourself as to why we think you're wrong.

Rumours · 08/02/2015 18:34

*note

Caronaim · 08/02/2015 18:36

No, I am not saying that particular case was a misdiagnosis, I just wasn't expecting it to be accepted purely on my opinion. If I had known my words were going to be set in stone I would most probably have refused to answer. I am not saying all the children I care for have had quick diagnosis either. I had a boy in my tutorgroup last year who was diagnosed for about 5 years then undiagnosed again. My closest friends son had a diagnosis "offered" but she turned it down ( she is a teacher)

A lot of the children in my care have been quite severely disabled, so yes the diagnosis might have been quick, but it wasn't a grey area.

Dawndonnaagain · 08/02/2015 18:38

Caron. I think I have been remarkably patient, it is wearing thin. I have explained (along with others) that misdiagnosis is NOT the same as 'over diagnosis' whatever that may be. A retraction a few years later of Bi-Polar, replaced with an AS/HFA diagnosis is not 'over diagnosis of either condition, it is misdiagnosis of one. I have tried to point out that those with Kanner Autism will inevitably present differently to those with AS/HFA. I have asked you to acknowledge that it is a spectrum, and you still remain entrenched in your: 'well I said it once and they took my word for it so it must be overdiagnosed'. An anecdote does not data make.