I dont want anyone to know about autism dx...rant from hell!!!

[LunnyTunes]

Am I being silly?

My brother told his teenage kids/new girlfriend ...who the hell else has he f@@king told that my son has autism (dx 3 yrs ago)

I dont tell no one not even friends know...in the hope that I can get him up to the best he can without being judged in this 'if you got autism you dont fit in' in this society! Dont argue they do cause here you read all the time...teachers/professional/friends/other peers problems...we wouldnt need support groups like this to pour our f@@king hearts out to if all was dandy!

I have opened a can of worms but dont I have a the mum have a right to confidentialty for my child. I'm devestated and extremely

DS2's understanding is increasing too - especially his emotional understanding. I got very cross with DS1 in the car today and may have raised my voice a bit and DS2 was shouting 'no, no' + something else I couldn't understand from the back of the car. He wasn't picking up on emotions at all before this year.

I think Wannabe worded it exactly how I felt.

OP, I can understand you not wanting your family to tell all and sundry about your DS, but I do feel that you are trying to hide it from yourself more than anyone else. I also think that you have a lot of issues with your brother, and this is perhaps the icning on the cake.

I also think a lable is only a lable if we let it be.

Hope you're feeling better today, and that you stay around this board as it really is one of the most helpful places I have come across when I need advice for DS2.

Wow, lunnytunes what a gracious response .

I'm afraid I wouldn't be able to summon up such good manners if someone used the "D" word ("denial") in relation to me .

My family is a bit rubbish too (I would sooner pull out a fingernail than tell any of them about DS2's issues) and it changes everything doesn't it?

Ah, many people have used the d word with me. It is usually professionals, and it is usually when I have been complaining about them. They tell me I'm cross with them because I am finding it hard to cope with the diagnosis.

I tell them I am finding it hard to cope with their low expectations of my son and lack of input. They then tell me that my unrealistic expectations are due to me being in denial.

It is them that are in denial. They are in denial that their piss poor service is so bad it's ineffectual.

MMcK that makes me very,very angry.

And do they also inform you that you are "defensive"?

I hate the 'denial' thing too - I don't agree with or like Elizabeth Kubler Ross in the first place ! She is the one who came up with the 'cycles of grief' stuff,

No, I try very VERY hard to never be defensive. It used to be one of my bad attributes that I spent time working on long before I ever had children.

It's hard not to feel defensive though but I know it brings out the worst in me and I start getting all illogical and lose control if it happens so I've very careful that it doesn't.

Yes, "denial", despite stiff competition, is top of linglette's all time top ten most hated pieces of SN jargon.

One of us (whom I will not out) has the professional skills to trace (or get one of her students to trace) the historical origins of all these words that we see in these reports about our children, and my suspicion is that we would find their origins quite unnerving. Many of the words seem more appropriate for robots than children ("functioning", for example, recently sailed through the first round into my "bootcamp" for dehumanising vocabulary and is likely to make the live singoffs).

I think this is important - not just a sterile academic exercise - because many of us testify that we cannot bear to read the reports. I wonder whether we should be blaming ourselves for this, as we all seem to, or in fact be challenging the dehumanising effect of the language being used about our child.

Blimey linglette. That never ever even occured to me but now you mention it it's blimmin obvious. My ds is 'high functioning', which obviously means he is competent at complex skills but will never be able to initiate social communication.

It kind of sets expectations doesn't it?

Right, - 'High Functioning' is totally banned from my household.

Referring the parent as 'mum' and flagging up Mum's opinion with a red flag for 'mum is a nutter' is my favourite hate.

'Mum indicates that she believes that the child can breath in oxygen in the home environment..' etc

LOL Had this too. Is it done deliberately to antagonise, patronise and dismiss? Or is it innocent, I wonder.

heh heh, you lot are funny! Loved the "mum claims that DS can breathe in oxygen in the home environment".

I think in 20 years we will look back on how we "educated" and "treated" autistic children in this country and there will be shame poured on the very professionals who are now telling us that our kids are no-hopers and that we are in denial. We are pretty much still in the Victorian age with these "treatements", but dressing it up with pseudo-scientific language to makes themselves feel more modern - "functioning" "social communication disorders" "learning difficulties". The "special nursery" DS went to till 4 told me the only way I could stop him from constantly playing with his willy in public was by putting him in dungarees. "What, for the rest of his life?" I asked. Luckily, I am a bolshy old cow, totally ignored them and simply told him very sharply "no" and removed his hand for 3 solid weeks, constantly, till he lost the habit. The so-called professionals in this market haven't got a fucking clue.

"Lots of people thought objecting to this was completely unreasonable"

What reasons did they give ? Does this happen in other cultures? I get the feeling it is still normal to call women Madame/Frau/Senora in other cultures. Why is it pompous to not want such a rude/informal reference to oneself?
I don't mind 'Mums and Toddlers' and obviously not Mumsnet but in a serious context , it's not polite or appropriate to call the parent Mum ! I think I will inform them that I am now to be referred to by my correct title - Mrs or maybe the Grand Duchess Seraphim ?

That Autism Advisory Teacher kept calling me 'Mum' at a home visit. I wanted to call her 'Lying Gatekeeper', but I am a professional in my job of SAHM.

The EP was good enough to refer to me as Mrs in her reports, but she referreed DH to 'Mr' when he is really 'Dr'. Should I request she changes her report? I've made everyone else change theirs for various reasons but hers wasn't too bad.

Professor Seraphim has a nice ring to it... Not true but that would fit in so well with the spirit of their reports.

'parents are experts on their child so we need to ignore them as much as we can or else we expose our own ignorance' is the mission statement of my LA I think.

'It is them that are in denial. They are in denial that their piss poor service is so bad it's ineffectual.'

You can I am sure guess my feelings on this one.

(In manner of Fast Show....'You aint seen me, right?)

We have told very few people about DS1's ASD dx. His preschool and associated professionals involved with him do know but family and friends-wise hardly any do. My in-laws and SIL do and my dad and brother do but I have no intention of telling my mother yet for a multitude of reasons.

We're not in denial nor ashamed but as he is only just turned 4 we haven't told him yet. He doesn't yet have the level of understanding he would need to comprehend it. Until he knows I don't feel right telling people his dx. I don't want him to feel he was the last to know.

I've been struggling recently and got a Homestart referral - and met a (lovely) volunteer. I think my skills of explaining ASD are lacking as despite telling her 3 or 10 times it was a life-long condition she was convinced when DS1 started school he would be "sorted out". When the Homestart person rang to see if I would like this person to be my volunteer I politely declined and when pressed why I reluctantly told them I felt she struggled to understand ASD. the Homestart person told me I should use it as an opportunity to educate her so if she helps a family in the future with a child with ASD she would have greater understanding. And yes I probably should do this, but I don't want to. I'm struggling on a day-to-day basis without inviting people in to my home to educate them. And yes, I get that I am doing DS1 a disservice by not taking the opportunity to change someone's beliefs but now is not the right time for me. Selfish - yes; the right thing for my family at this point in time - absolutely.

Going back to the OP, I think the concern of some of the early posters was that you might be putting pressure on your son, where maybe more pressure should be put on the schools. I understand you had a ver bad experience and it must make you wary. At the same time, it may have been just that one school. We had a bad time with one of dd's schools, but later experiences have shown that this was a one off, rather than the norm- and it was down to one person. Once he disappeared out of our lives, everything changed. So in retrospect I am glad I did not put more pressure on dd to fit in with this one person's twisted view of what SN children should be like. (I bent over too far in that direction as it was ). But I understand it is a very difficult choice to make.

notfromaroundhere- my DS went through the process but hasn't got a DX (?yet, who knows). I felt/feel very similarly to you. The idea of Homestart I would have thought is to make your life that little bit easier - so I don't think the Homestart coordinator was being entirely fair to you.

Who was that that posted at 15:12?