Curious about opinions on here - should the NAS split to represent HFA/AS and LFA separately?

[jimjamshaslefttheyurt]

This seems to be a real life conversation I'm having quite often now with all sorts of people (not brought up by me, it just keeps cropping up). I think recent Communication magazine have reflected this as well.

My belief (which has changed gradually) is that it should split in some way. Or if it doesn't it needs to rethink its strategy. At the moment imo it really doesn't represent the needs of those with LFA - HELP courses etc are very much aimed at HFA/AS (although not advertised clearly- something which has caused various problems), publications tend to be aimed at HFA/AS etc etc.

I personally think the needs of those at different ends of the spectrum are very different and unless the NAS addresses these differences more and provides separate help/realises it needs to address the different needs separately more people dealing with LFA (not particularly a term I like but the best I have at the moment) will become disillusioned. Everyone who has said to me they think the NAS should split is dealing with LFA. I don;t think anyone dealing with LFA that I have spoken to in the last year has said they think it should stay together. Which is telling. (Not that I've spoken to everyone I know of course).

So I'm sat here with my renewal form, wondering why I should renew. Should I renew and enclose a letter stating that it's my last try with the NAS? Should I quietly give it another go. Or should I just forget it and look to whether someone like Mencap can provide more appropriate support (be a better place to send my money).

Ponders. Interested in other views. It's something I feel very unsure about.

I agree with you completely - my brother was very contained and passive with no challenging behaviour - although still in need of help (which was not available) because of his problems with empathy and social understanding.

Indeed so. Some people might imagine that HFA/AS means 'easier' but sometimes all that intelligence and verbal ability just means that children can spend hours screaming abuse at their parents or siblings, or work out incredibly inventive ways to escape. My friend had to lock down the house like Fort Knox, and even then they would manage to engineer a way out via some teetering pile of furniture, a stealtily stolen window lock key, out on the garage roof and away across the busy main road, etc. So did mine. Or that verbal ability means they'll stand in the playground screaming abuse at the teachers or other children and get excluded or bullied or hit etc.

I think what some parents mean is "we'd like our child to be one of the quiet ones who's no trouble". Wouldn't we all, but there's no guarantee that a child whether LFA or HFA or AS will be quiet. I could happily have swapped mine during the first three-four years of his life, bless him (I think I'm joking...not sure... ). He was one huge bundle of anger and determination and would run away from me on any opportunity whatsoever, including straight in front of traffic. He'd attack other children, and me and anything else that stood still long enough. And keep going 18 hours a day. He's stand in front of the washing machine for hours, flicking a cloth at it. Difficult to explain this to people, really. I think HFA might stand for "heck, he's fast and aggressive!!"

The person running the NAS HELP course my friend attended told the class it was a 'gift' amber. It was the main reason that she wrote a complaint. I think you're right that it makes life difficult wherever someone is on the spectrum. I do think that people with HFA/AS have the opportunity to explore an autism culture though, and in that sense I guess you can choose bits to celebrate. Those with LFA can't do that. Donna Williams really writes the best stuff on this topic though.

I agree with you cyber that most people want their children to be high functioning. It's another issue with support groups ime. If I go and someone new looks to me for an example of how my son has done, if I tell them the truth they look horrified and in some cases react very negatively. However, I think they're somewhat missing the point, the issue is where I am or we as a family are. Yes ds1's autism poses enormous challenges for our family, but he is happy and with help from --idiots- people like SS he can have a good quality of life - a very good quality of life. I don't like the way he gets pitied or seen as an example of the worst outcome for someone else's child. We've had a lot of very odd comments as well - similar to the ones your friend mentioned Filz. It makes it very difficult to talk about him in such a group because unless you experience it you have no idea what his life is like. It is too far from the norm for people to imagine or really understand.

Filz I agree with you about a severe disability group- which was why I stopped going to NAS support group meetings and found the mixed disability ones more useful at ds1's school. I wonder whether a national charity that was aimed at campaigning for issues around SLD would be more effective (probably that's Mencap I guess).

I wonder whether those with LFA would want to, though? (...explore an autism culture). It's a really interesting question and I don't know the answer. I think maybe the lower the functioning, the less there's a need to socialise, so maybe even if a culture was there for such a child, they wouldn't necessarily want benefit from it as it would be too stressful? Hmm. No, it's making my head hurt thinking about it.

But I'd want every child to have the same right to access things that they need, definitely. If an LFA child or adult wanted to share life with others who are LFA, I'd try to move heaven and earth (great expression!) to find a way to do it.

Can LFA individuals choose bits of their life to celebrate? Maybe so, but perhaps as they live so much more in their heads, not 'in our world', we might never have the honour of sharing those insights with them? Just thinking aloud really, not stating a definite opinion. It's interesting to hear what people have to say about it.

I have never had any dealings with mencap, apart from the photo exhibition that dd was in. I wonder what they do, do

I really don't agree there's necessarily less need to socialise just because someone's low functioning. My son loves going out and being with different people, there are a lot of people in his life who are very important to him who he likes seeing. He hates being stuck in all the time and actually likes being around people. If he sees familiar people unexpectedly (eg a child from school during the holidays) he's always pleased to see them. I think compared to some children I know who are higher functioning that him he's more sociable. Although his ay of socialising might be bizarre and unconventional.

He also spends a lot of his time trying to share what's important to him with those around him. So he brings me books of photos and shows me people in them, or brings me photos of our city and points out places we've been, he drags me outside to show me the moon etc. He just can't talk, and doesn't understand sentences so has a real barrier to communicating at all, whilst also is at the mercy of compulsions that he can't turn off.

I think this is where Donna Williams makes the distinction. Between those who have a choice, and those who don't (often, but not always that becomes as HFA/AS - LFA split). I don't think ds1 would particularly want to explore an autism culture (although who knows it would depend how relevant it was for him I guess, he certainly likes many of the photos that people with autism take - such as Larry Arnold's telegraph poles) but I do know he would love to be able to talk (he's managed to communicate that very clearly to me twice). He just doesn't have any choice there, he's at the mercy of his body.

Did you enter the competition Filz. I meant to but forgot! I'm not sure what they do either .

Oh I've just re-read- your dd was in the photo exhibition! Wow. Do you have a copy of the picture?

its an old one. I will see if its on this computer...

actually they're pylons aren't they? Larry Arnold's photos. Ds1 likes them anyway.

I have to work!

What Mencap does locally is (pactical) support local people with LD. They are particularly good with adults, ( clubs, support, advocacy) but variable with what is available for children. A town near us has a new purpose built playcentre and afterschool club for children with LD (including ASD), active website and magazine. We live outside the catchment for these facilities, but near an adjacent small town which has a play session for sn only once a month at a local softplay - so more limited. ( yes I have wondered about moving!) Mencap help run (with other organisations) a county wide holiday club ( for all sn but is particularly well siuted for ld and runners!) which is brilliant. A saturday club is in the pipeline! ( Ds is very sociable ie he needs social contact - and attended the pilot sat club - it was utterly brilliant for us all! ( First lunch out with dh for nearly a decade - BLISS!!) Ds needs his own bit of life!

aww what lovely photos. Did you enter them for the competition. I must remember to do ds1 next year!

That sounds good magso. I think locally that Mencap mainly work with adults which is probably why I'm not very aware of them. I do know one person who has been involved with them for years and I see her every 6 to 12 months of so, so next time I see her I'll ask!

it was the old one that was entered, yonks ago. i just put the recent one up to show how much she has grown

I find it frightening. When I look at huge ds1 these days. When did it happen?

I dont know its not fair is it? have you had the secondary school forms to fill out? (my friend as her dd is in the same year as your ds1) shocking!

Oh no I haven't, but I assume that's just because they stay in the same school (I've lost track of which year he's in.... although he's only year 5 I think - 9 now, 10 in May). Did get forms for little ds3 though

What would an ideal set of support services of some sort look like for a family with a child with an LFA? I really would like to find out what people think would work well, if there was the money to set it up?

Our biggest problem is accessing things really. Ds1 can't wait, cannot be left alone unsupervised, and needs an enclosed environment to be safe. He has a good playscheme (held in a residental unit) but there are only 6 places a day so it's hard to get a place -- SS allocated (1:1's for each child so they can go out if they want to, locked doors within the building, high fences around the garden).

He likes climbing, but again needs a special session. The surfing worked but lots of 1:1's and it was set up with LD's in mind.

I'd like to take him to the cinema but he'd need a special session.

I would like my daughter to be able to access normal things tbh but with her peers. So maybe a special brownie session or something. She LOVES dance and drama too but there is just NOWHERE at all that can or will take her We have a childrens disability centre that has been built locally but they have set up the asd/as support groups first even though there are lots of accessable things already. i know i sound resentful and that because I am a bit but she is so excluded from everything and she is a very sociable little girl

jimjams - the picturehouse chain advertise autism friendly screenings (I think there is a cinema in Exeter, not sure if one in Plymouth). Not sure if that sort of thing would be any use to you.

Um no, don't want to join 2 differing groups and that wouldn't be just me either would it? Quite commn ime to have 2 different spectrum placed kids in your household.

As an aside where would a child with the dx of as/ hfa should go PMSL? (coz its a stupid dx! I know why we have it- its the language thing- but SALT were never going to put in the manpower to bother assessing that properly)

As for should they change- yes. There's no reason why they couldn't run sub groups, in fact it would make lots of sense as long as they were integrated where appropriate. A lot of work could be shared- fundraising, campaigning, tutorials on specifics because a ,ot is shared by kids across both dx's eg in some aggression- but specifics can be dealt with by people trained in that field. Would just take a reshuffle not much more and be quite do-able as an ex-charity professional myself. macmillan managed it by absorbig a child's cancer charity thereby offerin support to the kids affected, but byretaining te separate identity.

I also think separating would be a prob for those without a dx yet.

FWIW JimJams I didn't renew becuase the support to us as poor too- HELP! run at silly inaccessible times etc- could it be a more absic issue with them perhaps?

Example of typical support offered by NAS:

'OK well lovely to see you agian. you will hear from me shortly about how we will get free nappies for ds3, access swimming for him and maybe get that restraint training (offered to only parents of special school kids here) provided'

Six months later- not even a phonecall to say sorry or apologise for the delay!

fillz - if I were stilla Browne leader I'd gladly tae her, sadly the disability training is woefully iadequate and it would take a leader with personal experience I think- which is where you get issues, because who is least likely to have the time.......? Quite.

the brownie leader was very nice about it but just said it wasnt the right place for her as she felt the other girls would pick on her

I went to an inclusive art therapy class at the weekend but I was a bit disapointed as it was just a standard Halloween story at NT 3-5 level. It was inclusive in that I was allowed to bring him but I didn't feel that DS1 was included as they made no effort to simplify the language or the questions for him. I did ask in advance if it was suitable for ASD children and was assured 'yes' but I know now that you have to go further and ask 'What do you actually do to include children with communication problems?'