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

176 replies

autumnsmum · 17/03/2013 09:27

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.

OP posts:
UnChartered · 17/03/2013 09:34

sorry you left feeling so down, autumnsmum

if it's any comfort my DD is HF but we are about to apply for a statement and have been advised to prepare ourselves for the possibility of a special unit for when she goes to secondary school.

i do understand though, when you're in the middle of a really tough time (i'm sure the SA is no picnic) it seems as though everyone else is breezing it through.

Thanks and Brew for you

sickofsocalledexperts · 17/03/2013 09:39

It is a real problem with autism, as that one word "autism" is supposed to cover such a wide range. I well remember going to a meeting of autism mums where a mum of a very hf boy was weeping because her boy kept spotting trapezium shapes everywhere and chatting about them. At that point, my boy had very few words, had never said "mummy" and had no idea what day it was, or even what a day is. Yet to her of course, her problems were real. It's just that they are totally different problems to mine.

And again, there are autistic kids I know who self-harm , bite everyone they meet and eat rather than look through books. So they probably think I don't know I'm born!

Even on here, I think the problem of autism being totally different for everyone sometimes causes problems.

fanjoforthemammaries7850 · 17/03/2013 09:40

My DD is not high functioning..I know how you feel...any support group I go to has all parents of high functioning boys.

fanjoforthemammaries7850 · 17/03/2013 09:41

My DD eats rathe than looks at books Grin

autumnsmum · 17/03/2013 09:45

Thank you so ,so much everyone .the point was put very well I see many children who have worse issues than dd and I feel bad moaning but my dd headbutts things and slaps herself in the face and someone was spouting forth about how wonderfully verbal her dd is.

OP posts:
sickofsocalledexperts · 17/03/2013 09:49

Fanjo - it s very hard not to grit my teeth when the hf mums moan on about stuff that doesn't sound that bad. Everyone thinks that the word "autism" means their own experience of autism. I see a lot of very severe kids, to such an extent that I am not sure I can call my boy severe around them, maybe he is severe/moderate. But next to the hf kids, he is def severe. I come back to it really being about learning difficulties (impaired IQ) as much as ASD.

fanjoforthemammaries7850 · 17/03/2013 09:51

It is hard to listen to that when what you wish for more than anything is for your child to be more verbal, I know.

sickofsocalledexperts · 17/03/2013 09:53

It is tactless - no-one would dream of saying "god, my boy is always running and jumping around" when chatting with a mum whose child uses a wheelchair!

fanjoforthemammaries7850 · 17/03/2013 09:53

Sickof..I know what you mean, there are more severe children than DD at her school so I wonder about calling her 'severe'.

But then she is nearly 6 1/2 and in nappies and non verbal so she is not exactly HF.

I do know parents of HF children who really have a hard hard time though so I think it is just a different set of problems from those which we have to deal with.

UnChartered · 17/03/2013 09:54

'hf mums moan on about stuff that doesn't sound that bad'

did you really mean that to sound so dismissive, sick?

fanjoforthemammaries7850 · 17/03/2013 09:55

Sickof..I agree. Sometimes people just don't think before they speak.

I find the threads on here about 'I wish my child would just shut up' unbearable, personally. But no one means anything bad by them.

fanjoforthemammaries7850 · 17/03/2013 09:56

I think sickos was just referring to people like the mum weeping because her child kept spotting trapezius shapes, when she would probably be thrilled if her son said trapezius. I don't think she was belittling all issues.

fanjoforthemammaries7850 · 17/03/2013 09:57

*sickof not sickos..pesky ipad

sickofsocalledexperts · 17/03/2013 09:59

Honest, not dismissive

PolterGoose · 17/03/2013 09:59

This reply has been deleted

Message withdrawn at poster's request.

fanjoforthemammaries7850 · 17/03/2013 09:59

I also meant threads on general MN about children talking a lot, not on MNSN

sickofsocalledexperts · 17/03/2013 10:00

I have both high functioning and low functioning in my own family

Both have problems

Low functioning is harder.

fanjoforthemammaries7850 · 17/03/2013 10:02

Some stuff doesn't sound that bad, I think it's different from saying there is no bad stuff.

I find it hard to hear people saying their child won't stop talking about a specialist subject or just wants to be on pC all the time because my DD can't talk and has no ability to use a computer.

Doesn't mean I think people have it easy and don't have other real issues to deal with.

UnChartered · 17/03/2013 10:02

so a family with NT and HFA might find HFA harder for them

it's relative but you were being dismissive

Handywoman · 17/03/2013 10:03

It's so hard, all this putting people in boxes malarky. The increased awareness of ASD in girls seems to have led to more boxes being created to put people in. My own beef is this description of HF girls saying that they are (as clinically definable symptoms) ALL: obsessed with classic literature, celebrities and animals (as opposed to Thomas the Tank Engine, I suppose). What the ACTUAL f*ck?

I think we all feel alienated by these boxes that we're supposed to be in but don't quite live up to, in our own way.

sickofsocalledexperts · 17/03/2013 10:04

I think it was honest

Have you had experience of very low functioning?

fanjoforthemammaries7850 · 17/03/2013 10:04

Big difference to me is HF children will go on to probably have independent lives but have a struggle to do it. My DD probably won't but will be quite happy. Totally different situations you can't compare.

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PolterGoose · 17/03/2013 10:05

This reply has been deleted

Message withdrawn at poster's request.

PolterGoose · 17/03/2013 10:07

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Message withdrawn at poster's request.

UnChartered · 17/03/2013 10:08

yes

but competative parenting isn't my style so i'll leave you to it

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