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

(83 Posts)
jimjamshaslefttheyurt Sat 25-Oct-08 10:19:59

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.

bullet123 Sat 25-Oct-08 10:48:05

It needs to acknowledge the needs of people who would be considered LFA as well. But splitting up could be awkward, as some people (like my ds1 for example) do seem to be more MFA, so I would feel he would fit into neither one.
It certaintly needs to rethink its strategy.

jimjamshaslefttheyurt Sat 25-Oct-08 11:08:46

One of the people I've been speaking to who was complaining about a HELP course has a child who is probably best described as MFA. Maybe it's a HFA/AS - non-HFA/AS distinction that needs to be made or recognised or paid attention to. I can see what you're saying though. And I suppose a split would perhaps leave those with AS who see themselves as disabled a bit high and dry (there was a letter about this sort of thing in COmmunication recently).

I think another problem is that the most severely autistic are barely mentioned in the research literature and haven't really featured in films/tv etc so have very little voice anyway. Very few people are aware of their existence or really what their lives are like.

daisy5678 Sat 25-Oct-08 11:10:46

It's hard, as some parents find it hard to categorise where their child fits.

My local area just dx's everyone ASD, unless their ADOS shows a low/borderline score in which case they dx AS! hmm not quite what the diagnostic criteria says to do, from what I've read!

So parents have to push quite hard to get a specific dx. Eventually, when I pushed the consultant, she said autism, but wouldn't be specific in how high functioning she felt he was. It's pretty obvious to be from stuff I've read that J is HFA, but is so severe in terms of social interaction, behaviour and self-care that they won't actually put that label on.

I'm guessing there are other people in a more murky situation where they don't know whether their child is HFA, LFA or AS - and if their area doesn't dx properly, then even a label could be irrelevant. So they might not know which bit of the NAS to contact if theere was a split.

That said, I agree with you that it is frustrating that they don't cater for the whole range of ASD. Maybe that should be the thrust of your letter, which is a great idea. After all, if you're paying a membership fee, you rightly expect that you'll get something which is relevant to you in terms of service.

jimjamshaslefttheyurt Sat 25-Oct-08 11:24:25

I've heard (reliably) that the response to a friend's letter about this issue was that 'parents of children with HFA need more help than those with LFA' which makes me think that the current NAS has literally no idea abut the issues people are facing (not arguing in a competitive sense- just the idea that they can be so dismissive).

Several friend's have fed back to course organisers that they got nothing from the HELP courses as the strategies were all aimed at children who were conversational (despite these specific courses being advertised as suitable for those with ASD anywhere on the spectrum). And nothing has changed, they just seemed to get defensive.

I don't think the diagnosis someone has matters that much, it's just about providing courses and literature that reflects the wide and varied needs and very differences across the spectrum. I just don't think the NAS does that. I'm not sure that one organisation can really.

cyberseraphim Sat 25-Oct-08 11:30:03

When you look at the adverts in the NAS magazine, it does seem that the products and services are aimed primarily at LFA children (LF is an awful term but we seem to be stuck with it) whereas the articles/editorials are aimed primarily at HFA adults/teenagers/children. Maybe the advertisers know the market better ? I know the new additions to the spectrum are mainly at the high end but are there any figures for what the percentages are in each category? I don't know where DS1 is on the spectrum yet, I have renewed NAS for this year but I won't carry on doing it if I stop finding it useful.

jimjamshaslefttheyurt Sat 25-Oct-08 11:36:37

ha ha cyber- guess what I read in Communication I would actually miss the adverts if I stopped getting it.....!

I don't think there are any figures as such because the diagnosis doesn't necessarily reflect functioning. I suppose one way would be to look at special versus mainstream populations at secondary level.

cyberseraphim Sat 25-Oct-08 11:41:44

Yes I suppose you cannot really diagnose LFA/HFA until a lot of water has gone under the bridge so it is more of a backwards diagnosis than one that can help with planning what sort of services might be needed.

MuAHAHAHAHAHmi Sat 25-Oct-08 11:42:12

As someone who has been trying to liaise with the NAS and their local regional office on behalf of a HFA mother and her M(moderate?)FA son, who finds receiving a response from them is like getting blood from of a stone as it is, I don't think a split is going to help them get their house in order.

I don't see how each regional office will be able to draw a consistent line between the two which means a lot of people will be bounced between one and the other.

jimjamshaslefttheyurt Sat 25-Oct-08 11:49:31

It is too corporate these days. So what is the answer? Just leave the NAS to itself and see it as irrelevant? Perhaps. I do wonder about exploring Mencap more.

Having looked at the list of people involved in NAS policy (on their various committees) I think the chances of LFA issue being brought to the fore is quite low (although I did vote specifically for someone - because he made a point of mentioning the need to engage with families across the spectrum including those who were LF).

Perhaps I should write to the NAS and say I'm considering renewing but want to know what support they are going to be providing families on our situation before I make a decision.

daisy5678 Sat 25-Oct-08 11:58:46

I don't get why HFA parents would need more help than those with LFA. And I don't get why NAS would say that. Perhaps I'm being thick. J is very very difficult but I'm very aware that a child with LFA would pose different but no less challenging problems, possibly even greater ones. It's impossible to generalise though, isn't it, as every child is just so different. But the NAS should cater for all - any splits should be done internally (sounds painful grin ) so they have a HFA and LFA and AS section and they can then direct people to the services that fit them best - the magazine literature has always seemed quite balanced to me, but think cyberseraphim is right about the advert/editorial thing and that's why I might have thought that.

jimjamshaslefttheyurt Sat 25-Oct-08 11:58:59

Mind you reading your post Muahmi makes me wonder whether they're just annoying everyone!

They send the most ridiculous irrelevant irritating things to me. They really need to sort their database.

magso Sat 25-Oct-08 12:41:16

I am sitting on the fence too (form awaiting)- and have wondered if I should join Mencap or Cerebra! Mencap (I am not a member yet!) are quite active in my area so I might go that way. I have attended my first Help2 seminar - fully aware it was aimed at AS/HFA not my son who has mod- sev LD with autism. (I express it that way because to my mind he has both disabilities and - both are disabilities for my son). Having said that I did find it useful (and there was a brilliant collection of books to brouse through, that would appeal to all.)
I feel it would be a shame to split, (there is some common ground particularly in those issues that are not classified within the triad of impairment) and that the NAS should represent us all. There needs to be a stronger lobby for the rest of us! The NAS website and supportline has been invaluable at times ( as has MN) and I am grateful that they are there. I can't help wondering if once the neurobiology, genetics and therapeutic management of asd are better understood there will be a natural devision!

amber32002 Sat 25-Oct-08 12:43:50

Jimjams, I suspect that was my letter in Communications that you read re whether it should be ASD or ASC? It's a debate I've certainly been trying to open up with them.

I think there does need to be a differentiated service, yes. Those caring for individuals with LFA do need different support strategies to those caring for someone with HFA. I think the NAS could easily manage those two categories, but I likewise worry about the ones in between, and whether the existing hostility that can exist between the two groups would actually get worse rather than better. Would it be more of a tug-of-war for resources? I remember someone saying that those with LFA children felt sometimes that the HFA families were critical of them and said things like "Oh your child will never amount to anything - why spend money on them anyway - at least mine could do X or Y" which is in my view utterly awful as a thing to say. Likewise, those with a HFA child felt that the LFA parents were critical in saying, "Your child is so much more capable, what on earth can they or you possibly need?" Each individual on this earth is as valuable and deserving of love and support as every other person, and we all deserve the same respect and rights to a quality of life. I've fought long and hard for more respite care for families with children with LFA, for example, through the Every Disabled Child Matters campaign, with some success. Much, much more to be done.

The NAS sometimes worries me. I work with them, and many of their people are fantastic, but in some areas they worry me. It takes SO long to get answers out of them sometimes, and there isn't a consistency of understanding as yet. I remember going to one of their conferences and they had forgotten to check if the venue and event was autism-friendly. It wasn't. I was in complete shutdown by the end of it. But they were good about learning from that.

They've now got pretty big amounts of money, (about £29 million in various assets - restricted, unrestricted etc and an income of around £80 million a year) www.charity-commission.gov.uk/registeredcharities/ScannedAccounts/Ends25/0000269425_ac_20080331_e_c. pdf so I'm hoping it will mean they can invest more in the areas they need to and use that money to encourage other funding too.

amber32002 Sat 25-Oct-08 13:42:33

PS, for those who don't get Communication, they produced an article called "A rose by any other name" by Prof Rita Jordan which discussed the different 'labels' that different sorts of autism had, and whether (for example) those at the higher functioning end should be classified as a disability at all.

I wrote in to say that in my experience, I still needed the 'disability' label to be there, no matter how 'high functioning' we seem to be. I can only take myself as an example, but (some examples) during my life I have been bullied relentlessly to the point of suicide (school, work, internet), have been driven to serious depression , and to anxiety so bad that I stopped being able to go out at all unless accompanied and couldn't travel more than the shortest distance from the house, I've have had to fight food obsessions/routine obsessions that have really impacted on me, I have been conned out of money on more than one occasion because I can't tell who's trustworthy or not, I've been sexually assaulted because I got all the 'signals' wrong and instead of being able to defend myself, promptly 'shut down' and was unable to move or say anything...and sometimes I've only been able to cope by relying on fairly long-term harmful measures which I'm just not going to discuss. I cope only because I have a hubby who understands, an autism support network, people at work who are aspie-friendly, an advocate, etc. Even then, my life has to get planned SO carefully and there are SO many things I simply cannot do at all (ride a bike without falling off, swim, even fold a sheet, etc etc etc.) Is that worse than someone with an LFA? Of course not. But neither is it something that's just a different personality type, alas.

There are those who would like to think of themselves as differently-abled rather than disabled, and that's absolutely fine. But as a general principle I think we need the support and protection that a diagnosis and 'label' can bring. But also to be very mindful that at the moment there's only about 5% of the funding we all need for support. Now Autism Speaks are in the UK, I wonder if their campaigning will help change that?

countingto10 Sat 25-Oct-08 15:20:11

I, personally, don't have any dealings with the NAS as I feel local charities "working at the coalface" are more helpful to me (have 2 DS's with HFA). The Sussex Autistic Society provides family centres, playschemes and youth clubs. It was on the point of closure 2 years ago due to lack of funds and NAS was not forthcoming. The lottery provided some funds for new youth club (eldest DS on an outing to Chessington today, paid for by the society) and social services also provide a lot of funding as they recognise that the society is providing much needed respite.

As far as the argument between HFA/LFA, the Sussex Autistic Society caters for all except children need meaningful speech to particpate in the youth club as it is designed to foster friendships etc.

jimjamshaslefttheyurt Sat 25-Oct-08 17:34:10

Yes that was your letter Amber. I thought you made a good point.

I think eventually there may be a diagnostic split (from vague mutterings I've overheard at conferences)- or at least an attempt to examine ASD from a functional rather than diagnostic perspective, which might really help with the in-fighting.

The Sussex autistic society sounds fantastic (a bit like the Wessex one). Maybe that's the problem with the NAS, it's too far from the coalface.

tibni Sat 25-Oct-08 21:12:09

I too am thinking of looking into MENCAP. I have some dealings with local NAS but they are not very active in my area. Locally there is a very active HF ASD group that run side by side with CAMHS but nothing for LF.

MannyMoeAndJack Sat 25-Oct-08 21:31:23

I'm a member of MENCAP and haven't had anything to do with the NAS (or local equivalent) as yet so don't really know much about how they operate. The local equivalent runs a residential school and there are sometimes adverts in the local paper for fundraisers and BBQs, etc, but I'm not aware of any of their services (and if there were any, I'm pretty certain that I'd know about them!).

Troutpout Sat 25-Oct-08 21:34:28

I agree with countingto10. Have had very few particularly helpful dealings with nas for hfa son beyond pointers on the website and as a good source of information... no practical support. Have had brill support from Local autism support team and local charity lottery funded/children in need funded groups though.

busybeingmum Sat 25-Oct-08 21:47:52

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busybeingmum Sat 25-Oct-08 21:52:44

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filz Mon 27-Oct-08 08:04:25

my friend (dd with LFA) found the same. She actually stopped being a member. I know another friend who has done the same (2 boys, 1 profoundly autistic, the other severe) Infact it was something we were discussing last week. We all felt it would be more beneficial to set up some kind of severe disability (lds) group which would be local to us. I know we have discussed this before jj, but its the severity of the disability which makes us more isolated from anything, not the specific diagnosis iykwim. I know my one friend had often left autism groups with a nasty taste in her mouth whilst all the parents discuss what a 'gift' it is and isnt it fantastic that their children arent 'as bad as some'hmm(maybe she has been unlucky) I know what you mean about the courses too, some of it is completely irrelevant if you have a child who has severe LDs

amber32002 Mon 27-Oct-08 09:37:55

The trouble is that people say weird things no matter where people are on the spectrum, or in what setting, I find. Even those that have had training in LDs and autism have said the strangest things to me and made the strangest of assumptions. At the 'higher functioning' end, the reality is that I can get into accidental trouble ten times faster than a person with LFA, and yet am expected to handle everything myself without help as I look so 'capable'. People often assume that therefore my life is much easier than it would be if I had LFA. They perhaps get fixated on the aspirations of society - that we should all appear to be normal and in a good relationship and with children and a good job and a good education, not whether there is any quality of life accompanying any of those things, even if we manage them.

I'd be particularly alarmed shock with anyone who said it was a gift (it jolly well isn't, though there can be benefits for some individuals if we have the right help to make use of them) or who spoke on behalf of their child to announce whether it was or was not worse than another child's experiences. For all they know, a child with LFA just might be happy as happy can be, locked in their own world, and yet a child with HFA/AS just might be almost suicidally depressed or anxious because of the raised awareness of how very different they are and the awareness of bullying and the assumption that they can just cope, etc. We don't know how life is for a child without asking them. Parents/carers can't truly speak on behalf of the children affected to say how 'mild' it is for them, and I think they shouldn't. They might think can guess if their child is clearly very distressed, or clearly in pain, but many of us with an ASD are able to disguise huge distress or pain, or may fail to communicate it because we have no social protocol to do so. It can be very, very deceptive.

What's clearly desperately needed is the right support for everyone. Respite, therapies, the right education, the right attitudes, the right research to see how we can improve quality of life for everyone. That's a fight well worth pursuing.

cyberseraphim Mon 27-Oct-08 09:48:52

There are difficulties across the spectrum but I think most parents, at the time of DX, hope that their child will be HFA. Parents spend money and time trying to improve their child's chances of 'promotion'' up the spectrum. My brother is HFA and he had a lot of problems in his life especially during adolescence due to his undiagnosed condition. However I do think that if he had been LFA, the impact on our family would have been different and much more challenging. However, my brother was and is passive and withdrawn which I know is not always the case particularly with Aspergers. Most of the support groups I have looked into cater to children much older than DS1 and all HFA. It does seem that parents of LFA children fade away from the support groups.

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