Felt let down by nas seminar on women and girls with autism

[autumnsmum]

Happy st Patrick's day everyone Just a little moan yesterday I went to the nas south east members seminar on asd in women and girls . I left feeling totally excluded no one had a dd like mine . Everyone had dds who were very high functioning , I have a dd who is being statemented and may go to ss or a least a unit . I realise it wasn't the organisers fault but I left feeling more depressed than when I went in . Thank god for mnsn which is the only place I have met people in a similar position to myself.

[sickofsocalledexperts]

If your child can speak I think a lot of tact is required around mums on here whose kids can't. That tact is not always forthcoming

[autumnsmum]

In my family my son who is eight has high functioning autism and he has problems in fact we have a meeting on Monday at his school about him (never rains but it pours in my house) .i would however have liked some input about lower functioning girls as like a previous poster said the talk was about teenage girls who like soaps.

[fanjoforthemammaries7850]

Yes..it is just a different set of problems IMO.

Having a nonverbal child is incredibly hard work, I have to say.

But I suppose a verbal one who can't communicate properly is hard too.

[sickofsocalledexperts]

Unchartered

I don't know your story but go to the main boards if you are going to fling around terms like "competitive parenting" when I am talking honestly about severe autism. Don't you dare fucking insult and flounce

[fanjoforthemammaries7850]

I agree with your last post sickof.

Am always reading on MN'they will all speak in the end'. 'sometimes I wish my child couldn't speak'.

I would kill for my child to speak. Have posted a few times on here that I think she is starting to speak but them she stops again, it's strange.

[fanjoforthemammaries7850]

Yes unchartered, it's not really the place for arguing. I'm sure sickof has been incredibly supportive to people whose children are at different levels of functioning.

[fanjoforthemammaries7850]

Agreed wtf to 'competitive parenting'.

My DD is LF, do I get a medal...what a ridiculous phrase to use here.

[MareeyaDolores]

Sick, I am that mum (at the local RL SN group rather than here hopefully), and for a long time felt i had no right to do anything other than count my blessings.

When i finally did moan, a non-hfa mum informed me that the constant questions were verbal stims, the tantrums were meltdowns, his constant bouncing and clothes issues were sensory, the toilet issues, running off and hitting peers and siblings was challenging behaviour, and the reason she'd suggested i apply for dla 2 years previously was because she thought we'd get higher rate.

She had seen I wasn't ready for anything more than ADHD-high IQ-traits, so waited till after the ADOS till she said 'of course it was proper autism, and it's quite severe'. And it's true: her house is stripped of inessentials for safety reasons, and my first emotion on seeing this was and because ours needed to be clear too, but wasn't.

[fanjoforthemammaries7850]

It takes a while to get round to stripping the house..we are just now having to do it now DD is 6.5

[UnChartered]

report me then?

maybe competitive parenting wasn't quite the phrase to use, but i felt i was being asked to justify myself

[sickofsocalledexperts]

I don't report un chartered, I am an adult and don't need to run to mummy

[MareeyaDolores]

Reason for posting that actually because I agree with some earlier posters, that hfa-mums such as myself should (often) shut up be more tactful... but should also be careful of assuming the 'autism' bit of hfa is all that different to the 'autism' bit of classic autism

[sickofsocalledexperts]

Good post Mareeya, thank you

[fanjoforthemammaries7850]

I agree what that..in fact my DD's autistic way of thinking is possibly less obvious because she can't speak..I often wonder how she is thinking about things because she can't tell us, she just cries. I wnder what she would actually say. I think she would have the same way of thinking and issues as more HF children.

[fanjoforthemammaries7850]

She can't say 'oi, you have deviated from my routine slightly and it is upsetting me'..so I have often thought she wasn't routine driven, for example, but now realising she is.

[UnChartered]

i'm coming over all aggressive and i don't mean to be, but am feeling very defensive

i will back back out as i don't want to argue, i'm sorry for the 'competitive' phrase, but am not sorry for trying to express myself

[fanjoforthemammaries7850]

No need to feel defensive if you feel anyone is saying they think you have it easier.

There are kids at my DD's school who need 2:1 and beat up their parents, there is someone who has it easier than just about everyone in some way.

And even the more severe cases will have aspects which are probably easier to manage than some things you are dealing with.

[sickofsocalledexperts]

Right I am probably being a bit harsh on unchartered, but it hits a nerve. With one child in my family, the worry currently is "will she able to understand sufficiently the sub-texts and irony in her A level English studies"

With DS, it is - will he ever add 1+1 (or even understand what "add" means)

But then with a close pal it is - will she ever get out of nappies, say one word, or stop punching her own head

Doesn't this show how tricky it all is, and how tact and sensitivity are needed?

[fanjoforthemammaries7850]

Sickof..YES, I do have to sit on hands when people claim on MN to be devastated about their child only reading age appropriate books and not being ahead etc.

[fanjoforthemammaries7850]

But I don't think people really understand anything until they have lived it.

[sickofsocalledexperts]

True that Fanjo!

[Handywoman]

Yeah, I reckon we are all entitled to a moan (a la OP) just a bit of thought doesn't go amiss.

[sickofsocalledexperts]

Handy woman cleverly sums up whole thread in one sentence!

[fanjoforthemammaries7850]

Yes..usually I am short and to the point, feeling rambly today (and Dd is asleep so more time to post)

[colditz]

It's a different kettle of fish. I do moan about ds1 talking continually, but what people don't get is that it isn't a continual wish for my attention, or continual interaction, it's continual noise. They things that he talks about are not relevant and if I try to respond, or divert, or even join in, I may as well have not spoken. I actually can empathise with the woman who was in tears about the trapezium talk, because it distracts people, especially teachers, from how seriously your child is disabled. I remember crying because ds1 was talking about friction and yet still hadn't ever said mummy, but I didn't have the vocabulary to explain to the doctor that ds1 wasn't COMMUNICATING.

I worry for his mental health. He is high functioning and the ed psych says there is no way he's going to get a ss placement, but actually he needs one because he's so goddamned vulnerable. He's nearly ten, in a years time I am expected to allow him to walk three miles to school unaccompanied because "he's high functioning" but he can't even be trusted downstairs on his own in the morning, I have aSAFE with a COMBINATN LOCK because he picks locks and sees no reason not to do so. I cannot let him walk to school alone. He'd get lost or run over, like a four year old would.