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SN children

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Original poster

Question re ASD and disability.........

29 replies

Ben10NeverAgain · 01/05/2012 07:09

Disclaimer: I'm looking for opinions and am in no way criticising other points of view.

I went to an ASD children's afterschool club yesterday with DS (which he loved ) and met another mother.

When I said that I also took him to a multi-sports club for children with any disability or additional needs, she was surprised as she didn't want her children to be associated with the disabled community. Her two boys have severe autism - both verbal.

Now i think it is good for DS to be in clubs with children with other disabilities apart from ASD as it is teaching him patience and an appropriate way to view other disabilities - ie that children with other disabilities can achieve huge things too and everyone deserves to take part.

Am I just lulled into a false sense of security by MNSN parents being so open and accepting?

Is it that my DS doesn't have severe autism so I don't appreciate the difficulties?

Or is it a normal thing for parents or people with autism not to associate with the disabled community?

Or was it just this one lady (who had had a terrible wait to get her DS's dxed btw - made to wait until her son's 7th birthday when first assessed at 3)?

I've been thinking about it all night as I wasn't sure about the whole thing, I don't think I'm doing anything wrong by making him part of the wider "disabled community" - am I?? .........

Please tell me if you feel that my thread is inappropriate as don't want to offend. :)

OP posts:

Triggles · 01/05/2012 07:43

I don't think you're wrong. I would take DS2 to a club for children with any disability or additional needs - and have in the past. There just isn't one that has activities that are currently convenient with our schedule.

I can't think why she would feel that way. Is her diagnosis recent? Perhaps she is still coming to grips with the dx itself?

squidworth · 01/05/2012 07:49

One of the hardest things with a child with a lower end dx is that you get all the information on clubs for disabilities to have the realisation your DS is too severe for them this maybe her strange coping mechanism.

claw4 · 01/05/2012 07:51

I would have no problem with ds ASD attending clubs with other children with other disabilities or even my 'nt' children. Although ds might find this quite stressful for a variety of reasons.

Maybe she meant her ds's couldnt cope with it?

cwtch4967 · 01/05/2012 07:53

I feel the same as you op. Ds has a dx of autism and learning difficulties and goes to a special school which is not autism specific, after school today he will go to rebound club, there will be children with a variety of disabilities there.

I encourage my NT daughter to mix with able and disabled, to me we are all one community.

DameHermione · 01/05/2012 08:03

I don't know. I don't think DD is disabled. She's just excessively stroppy. (aspergers, v bright, 'just' hates school and breaks stuff). But maybe other people would class her as disabled because of her specific thingys.

But that wouldn't stop me letting her go to something like a sports club. And i do think it would be very good for increasing her patience and empathy for others with different problems (in fact her juniour school was fab at this and had a really good integrated sn unit).

DameHermione · 01/05/2012 08:05

Or maybe i'm deluded? You've got me thinking now.

Triggles · 01/05/2012 08:12

I do think some of us (or at least me) have a slight hesitation using the word "disabled" when discussing DS2. Not because I'm in denial as much as there are so many other children with what appears to be much more serious difficulties IYSWIM. It probably doesn't help when someone says to me "oh but he's not PROPERLY DISABLED." Apparently if he's not missing a limb or something, he's not properly disabled. sigh I think sometimes these things rub off on us just because I'm too weary to fight back.

But at the same time, I recognise that DS2 cannot do many of the activities or even daily things that children his age do every day. People looking into our lives only really get a snapshot - they don't see all the struggles behind it and don't realise that sometimes he seems relatively okay because we've scheduled our lives around his needs - if we didn't, he'd be in a puddle on the floor having meltdowns 24 hours a day.

Triggles · 01/05/2012 08:13

sorry, I meant "when discussing our children." Obviously you're not all discussing DS2. Are you?

Original poster

Ben10NeverAgain · 01/05/2012 08:19

You see dame - I think that this is the type of thought processes that I was going through. I claim DLA, therefore when that came through accepted I think that I accepted he had a disability IYSWIM. DS has HFA/AS, reasonably bright but very different to his classmates. He doesn't play with people at school except in an organised activity yet yesterday in an unstructured session he played with everything and with actual children

She said that her DS1 was gifted with severe autism and DS2 had LD with severe autism. That might be a difficult combo to fit into a group that wasn't an ASD group?

Also maybe part of her difficulties with "disabled" might stem from the length of time that she had to wait for dx. Same PCT as mine which dxed my friend's son at 3 and DS at 6, (different paed) made her wait until day of their 7th birthdays to get dx. Poor woman had years with both children displaying autistic behaviours but no dx to explain them. Her DS2 is 7 so a recent dx for him.

I understand that I am lucky that I've managed to find an ASD group, a mixed disability sports club and m/s beavers that he has managed to tolerate and enjoy. We've sacked off enough other activities that he couldn't :)

OP posts:

wolvesarejustoldendaydogs · 01/05/2012 08:19

'the disabled community' is just people with disabilities, for goodness sake. the other mother is prejudiced and silly. There is no walled-off island which people with disabilities enter and never leave, so she doesn't need to prevent her children from coming into contact with them. Equally, people with disabilities don't HAVE to do things with other people with disabilities, only if they want to.

She should try substituting 'black' or 'female' for 'disabled' and see how silly her comments sound.

There is discrimination against people with disabilities. Unfortunately, you can't just avoid it by not applying the term 'disabled' to yourself or your child. I think overcoming one's own prejudice agains the word is the first step to changing the world's...

Original poster

Ben10NeverAgain · 01/05/2012 08:26

Triggles I know exactly what you mean don't worry. I know that our lives are changed completely by working around DS but on the other hand, I know that some other parents have things so much more difficult.

I did express this concern when I first started at the multi-sports group as DS doesn't "look" disabled and doesn't display as overtly "autistic" tendencies as the other couple of boys on the spectrum who attend. We have a little girl with CP in a wheelchair who needs to be pushed around, children who go to SS, lung problems etc. I didn't want them to think that I was taking the mickey IYSWIM. It was completely the opposite. The mother with the little girl with CP said that she has the problem all the time that it is difficult for her to find activities for her daughter as she needs to have a 1:1 to help her with the sport. She wanted everyone to feel welcome.

I'm pleased that no-one (so far) has taken offence by my question. It is a concept that I have been mulling over.

OP posts:

Original poster

Ben10NeverAgain · 01/05/2012 08:29

Wolves Very good point that I hadn't thought of. TBH I was very surprised with her reaction.

OP posts:

Triggles · 01/05/2012 08:38

Wolves does have a point, however, at the same time, I don't necessarily know if it's a matter of overcoming one's own prejudice. I sometimes hesitate to use the word disabled regarding DS2 because of comments I've received from others and I'm loathe to start a bunfight or get into an argument over the semantics of disability. So more dealing with OTHER people's perceptions.

EllenJaneisnotmyname · 01/05/2012 08:44

My DS went to a non specific special school when he was 3. It took me a little while to accept he needed to go there, but mixing with other DC with various disabilities made me realise that he really did fit in. He benefitted from some of the other children's greater social skills, they benefitted from my DS's computer skills! I do feel that we are part of a community and I feel real affinity for other parents with DC with SNs, whatever those needs are.

bigbluebus · 01/05/2012 08:55

We have had discussions about this recently. In our area there is a holiday club which is "all inclusive" for children with any disability (and their siblings, where places are available.) Children with HFA don't seem to be using it, for various reasons, but one of them being that they/their parents don't feel their children 'fit in' with the more severely disabled children that go, and they are not able to cope with some of the behaviours these children display.
I think to a certain extent, it depends what circles the ASD child is used to mixing in, just the same as it would be for a NT child.

My DS has HFA but would be classed as being at the 'mild' end of the spectrum. He does not consider himself to be disabled (we had this discussion when he had to fill a form in and it required you to tick a box to say if you were disabled for monitoring purposes). He is used to being around children with disabilities as his sister is severely disabled and his cousin has Down Syndrome. However, he would not choose to join a holiday club with this group - not because he is prejudice, but just because he wouldn't feel 'on the same level'. I see this as the same as me not choosing to join the WI because I am rubbish at flower arranging, baking and sewing and would therefore have very little in common with that group.

I think this is always going to be a difficult area as parents are sometimes in denial, but somethimes the term 'disabled' just seems a bit 'harsh' if they compare their child's difficulties to more severely disabled children. Whether or not their child fits in at a particular 'after school activity' I think is more down to the individual dynamics and make up of that particular club and whether or not that child (and the parent) feels they fit in. But I agree, if it is billed as a club for children with disabilities, I parent wo doesn't see their child as 'disabled' is unlikely to consider sending their child there.

In our area, the clubs are advertised as being for children with 'disabilities or "additional needs" which would means there were barriers to prevent them accessing mainstream clubs/services. So from that description, maybe the mother Ben talked about would feel able to access clubs as he child has "additional needs".

Original poster

Ben10NeverAgain · 01/05/2012 09:35

It really is a tricky one. DS is only 6 and obviously doesn't know that we get DLA. He knows about his ASD but we haven't called it a disability. He knows he goes to the multi-skills club as he has dyspraxia and finds sports hard "and the club is for children that find things more difficult and that is called a disability".

My dad has a disability and needs a stick and has a blue badge. I think that DS thinks that you are disabled if you have a "disabled badge". My friend's son has ASD and is a runner so has a badge. DS asked why as he doesn't have a stick like grandpa. As her son doesn't know about his ASD, I didn't tell my DS about it - just that it was because he sometimes runs in the carpark.

I've just checked the flyer for our club and it is for children with physical/additional needs. When we joined it was for children with disabilities. They have tried to widen the range of children who attend. However I was told by the LA that the SN holiday clubs are not for children who attend MS schools without a statement however........

OP posts:

StarshitTerrorise · 01/05/2012 10:01

DS doesn't attend much in the way of disabled activitieswith the exception of swimming and an autism group run by evangelical christians which I have chosen for their excellent structure, high expectations and independence from the LA.

I'm not really sure why he doesn't go to anything else. Perhaps Ot is because a) I avoid anything with links to the LA and b) I want to give him practice of negotiating the NT world at every opportunity.

We attended the swimming group be because it was free, but it was the swimming teacher that made the allegations that we were fraudulently claiming benefits.

streakybacon · 01/05/2012 11:53

What is the current official line with regard to ASD and disability? I've heard tell that it's being downgraded (DSM V, perhaps?) from a disability to ... something else - a condition? A difference? It can be hard to know what label to apply, especially your child receives DLA and is on the local authority's Disabled Children's Network, yet some professionals will insist it's not a disability .

squidworth · 01/05/2012 12:13

I was informed that autism is not a disability but the effects of autism are disabling. DS2 is recognised as being disabled by social service not because of having autism but the LD caused by his autism.

Triggles · 01/05/2012 12:28

It's all semantics, isn't it though?

coff33pot · 01/05/2012 12:35

DS doesnt go to any SN groups or ASD groups purely because there arent any. I would give my eye teeth to have such a group.

He is now slowly starting to work out he is different to a lot of his peers and it would be good for him to see that he is not the only "different" boy and seeing the achievements of others and being accepted for who he is would help remendously.

AmberLeaf · 01/05/2012 12:42

However I was told by the LA that the SN holiday clubs are not for children who attend MS schools without a statement however

Bastards! no wonder I had such a hard time trying to find out of school care for my DS.

I too am at all these clubs! I looked at one for the summer that sounded great last year, but they said 'not suitable for ASD'

AmberLeaf · 01/05/2012 12:43

OP I think the mum sounds a wee bit in denial? not being critical of her thats just how it seems to me.

streakybacon · 01/05/2012 12:49

Thanks, squidworth. It's very much open to personal interpretation in that case, isn't it?

EllenJaneisnotmyname · 01/05/2012 14:09

ASD is a disorder. DSM 5 is keeping to that terminology, but many LAs and NHS trusts in the UK seem to be going for ASC, which is autism spectrum condition. I'm suspicious that they are trying to 'downgrade' it to avoid providing support. Paranoid, moi? Still semantics, though.

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