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.

[fanjoforthemammaries7850]

That is my take on it :)

[saintlyjimjams]

I do hear it surprisingly often in RL though PolterGoose. I have been told on more than one occasion that 'it's okay for you because' Neither of which is true. Well the second one certainly isn't, and there's no guarantee about the first one.

[devilinside]

True, they are all so different. My (supposedly HF) asd boy seems easier to manage than the aspergers boy in his class (who is overwrought with anxiety most of the time). He is not that rigid and happily trots off on holiday and on family days out, unlike his friend.

Yet, ds is an utter danger to himself and everyone else whilst out and about, he runs in the road, runs off, runs up to the river, twirls and spins, throws himself on the ground, refuses to hold hands. So bad that I am even considering reins, despite him being almost 7

[saintlyjimjams]

Have a look at crelling harnesses devill - they do a good waist belt rein set up if you don't need the full on set of reins (they do those as well). Very strong. I used them for years with my son.

[fanjoforthemammaries7850]

I have to use a backpack with reins for DD..little life do a bigger version of the toddler one...it has been a godsend.

[ouryve]

Oooh - where do they sell that one, fanjo? DS2's outgrowing his reins and we've been loathe to upsize to the crelling ones for him (though it has been tempting to order some anyway and tell DS1 that they're for him, since he keeps running into the road on the school journey)

[ouryve]

It's OK, I found some on amazon. They still only go up to 7 years, so we wouldn't get any more life out of one than what we have.

[fanjoforthemammaries7850]

Dd is very tall but still has loads if room in hers...

[Owllady]

I know where sickof is coming from actually as my experiences of autism support groups have been very much like saintlyjimjams and she has explained. We didn't belong because my daughter was at the severe end and the repulsed faces because she was still in nappies was too much for me to bear so i stuck to the SLD school support groups instead

[ouryve]

DS2 is quite tall, but he has hulking great shoulders. The ones he has are fine if he doesn't wear a thick coat, but he's getting increasingly good at doing his custard impression and wriggling out of them. He's also objecting to them and trying to take the straps out of my hand. Not that I blame him - he is nearly 7.

I might try him with the back pack, anyhow. I can always pass it on if we only get a year out of it and it's still in good condition.

[Owllady]

god I know re anxiety JJ.
but I think that shows the ignorance surrounding severe autism and sever learning disabilities in general. It's as if they are not a whole eprson who will have feelings

[Crawling]

What are these NAS is there anyway I can find out if they are doing one near me? I would love to take my dd somewhere she can meet children like her.

[emmetbrown]

I have the Alpine 4 daysack for my son. I couldn't manage without it. He is 7 & broadshouldered too & it still fits him. I got it from the little life website. Now he can pick it up on his way out the door!

[ouryve]

I've seen that rock and snow stock them. I'll likely be passing one, next week, so I'll have a look, then.

[MerryCouthyMows]

Owl lady - who the hell was pulling repulsed faces at a DC with Autism still in nappies? Jesus, they would have lived me and my DD who still wore NHS nappies at night until she was 11, at which point she refused and just pissed the bed 3 times a night instead...

For you!

[saintlyjimjams]

Oh a lot of people get squeamish about teens in nappies. Although tbh if your teen is in nappies it's often the least of your problems.

I think it's just my earlier point about the needs being so different it's hard to support within one group unless the group is sufficiently large to have fairly large numbers of people with the same sort of problems

[Owllady]

It was other parents, my daughter is still doubly incontinent aged 13 - day and night

[saintlyjimjams]

Which why as you said SLD rather than ASD support groups can be more helpful - in SLD terms being a teen in nappies isn't unusual at all (and you can swap horror stories about refusal to provide pull ups or more than 3 nappies a day).

[Owllady]

no, it isn't unusual at all nor is drinking out of a milk bottle, poo smearing, being obsessed with pre school programs/toys, not being able to read, write your own name, refusal to walk in general, extreme challenging behaviour, self harm and sid, epilepsy disorders, working at lower p levels
etc etc etc



and no it's not a competition, but if you don't fit in, you don't fit in. It really is as simple as that but provision needs to be made in organisation to be inclusive to those who are at the severe end of the spectrum. Just because it's a minority, it doesn't mean we don't exist. We are excluded enough from mainstream society as it is, without those who should support us excluding us as well but I have similar issues with another organisation BUT tbf to them they were more concerned about the lack of support from exterior agencies in order to access their support iykwim

[saintlyjimjams]

Yes that's true. And the reason I finally stopped paying any money to the NAS was that head office seemed completely clueless about severe autism (see my previous comments on this thread).

[autumnsmum]

Ow lady and saintly that sounds really hard I wonder if I would an ld group more use although dd hasn't been diagnosed with LSD yet as she refused to cooperate with any assessment.Another great line at the talk was how exhausting girls on the spectrum find socialising which I'm sure is true .My dd smartly avoids this by ignoring other children completely

[saintlyjimjams]

You'll probably find when she starts school (esp if she does go to a unit or ss) that you'll find others in the same situation then. It IS depressing to be excluded because your dc can't have the problems being described (iykwim) so I think how you felt was entirely normal (BTDTGTTS!) Moan away!

[MerryCouthyMows]

I heard today that one of the only two ASD support groups in our town has closed because the lady running it has some personal issues (read her severely Autistic teenager is currently without a school placement...)

The other group is inaccessible to ANYONE who can't get their DC with Autism looked after, during the day, on a weekday.

Because that's sooooo easy, isn't it?!



So there's a lack of support in some towns for EVERYBODY.

[MerryCouthyMows]

If I was feeling fitter, and not fighting 50 trillion battles already, I would set up a 'contact a parent' scheme where those with DC's could be 'matched' to another family whose DC presents similarly, so that people don't feel so lonely, or excluded - because there would be someone to match with everyone.

Maybe one day, if I ever get time to go to the bloody loo, I might get the time to think about how it could be done...