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

(177 Posts)
autumnsmum Sun 17-Mar-13 09:27:46

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.

UnChartered Sun 17-Mar-13 09:34:50

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 Sun 17-Mar-13 09:39:15

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.

FanjoForTheMammaries Sun 17-Mar-13 09:40:18

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

FanjoForTheMammaries Sun 17-Mar-13 09:41:29

My DD eats rathe than looks at books grin

autumnsmum Sun 17-Mar-13 09:45:52

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.

sickofsocalledexperts Sun 17-Mar-13 09:49:55

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.

FanjoForTheMammaries Sun 17-Mar-13 09:51:01

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 Sun 17-Mar-13 09:53:05

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!

FanjoForTheMammaries Sun 17-Mar-13 09:53:56

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 Sun 17-Mar-13 09:54:06

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

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

FanjoForTheMammaries Sun 17-Mar-13 09:55:09

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.

FanjoForTheMammaries Sun 17-Mar-13 09:56:54

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.

FanjoForTheMammaries Sun 17-Mar-13 09:57:16

*sickof not sickos..pesky ipad

sickofsocalledexperts Sun 17-Mar-13 09:59:27

Honest, not dismissive

PolterGoose Sun 17-Mar-13 09:59:43

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

I think that is really unfair.

FanjoForTheMammaries Sun 17-Mar-13 09:59:44

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

sickofsocalledexperts Sun 17-Mar-13 10:00:51

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

Both have problems

Low functioning is harder.

FanjoForTheMammaries Sun 17-Mar-13 10:02:11

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 Sun 17-Mar-13 10:02:49

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

it's relative but you were being dismissive

Handywoman Sun 17-Mar-13 10:03:58

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 Sun 17-Mar-13 10:04:06

I think it was honest

Have you had experience of very low functioning?

FanjoForTheMammaries Sun 17-Mar-13 10:04:12

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.

PolterGoose Sun 17-Mar-13 10:05:29

Totally understand that Fanjo I find it hard when people assume that because my HF child is very verbal that it means he can express his needs. He can't. He has no emotional recognition at all. The ability to speak does not equal an ability to communicate effectively.

PolterGoose Sun 17-Mar-13 10:07:50

I was responding to Fanjo's 10.02 post there.

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