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.

We have the same issues Filz. Even the dance and drama SN sessions aren't suitable. Mind you I remember Roz Blackburn talking about this saying that the only things she could access were those sessions aimed at people with PMLD's because she needs such a high level of support. I think there's a big black hole in understanding the amount of support needed tbh.

the cleader should be ashamed- I would never have allowed that to happen in my rainbow group and I don't think it is that hard to promote inclusion for 1.5 hours a bloody week in such a tiny grouping

[amgry]

What annoys me is that there are these bloomin' laws about disability equality and service providers, saying they must make services equally accessible unless it's completely unreasonable to do so...and yet how many do? Just about none, I think.

The local Picturehouse cinema here offers autism screenings, but that is the only service I've seen that does so. In my 'spare time' (!) I often contact local attractions or activities and ask them what they offer for those with autism. Mostly they're just astonished - they usually say I'm the first person who has ever asked, and that they've no idea at all and would I like to suggest something. And this is 13 years after the law that says all service providers have to have these things already thought about and set up if people need them. Grr.

Donna Williams mentioned in her talk (boast boast I attended!) that Tony Atwood now congratulates parents when he dxs a child as autistic. I'm not sure what I think of that. Would he feel the same way if it was his child ? Maybe he has an ASD child, I don't really know,

thats just it amber. I have people round here (sopcial worker etc) saying 'they MUST take your dd, they legally have to' etc etc but you show me a parent who will happily drop their severely, or moderately or even mildly,disabled child off at a place that cant cope with her or doesnt want her there

That's useful to know about the law, and about Picturehouse cinemas. I did contact Vue a while ago but didn't get very far with them (just some gobbledigook, I might try again better armed).

Cyber - I would say everything that 95% of the stuff I go to with ds1 that is advertised as being suitable for children with ASD is only suitable for HFA. Because it assumes language or an ability to follow an instruction or an understanding that you stay in the same room (even when the door is open). A child without language just doesn't feature on most radars. It's only recently (now I'm much more choosy about what I attend) that I've managed to find stuff that works.

Not exactly...found this on the internet at search.barnesandnoble.com/The-Complete-Guide-to-Aspergers-Syndrome/Tony-Attwood/e/9781843104957

"Attwood writes, "I usually say to the child, `Congratulations, you have Asperger's syndrome,' and explain that this means he or she is not mad, bad or defective, but has a different way of thinking." "

I think this is when he's talking to an AS child who is worried about their disability, so it doesn't mean he doesn't understand the potential worries of the parents.

That's interesting - I didn't catch the Aspergers bit in Donna's talk so it makes a bit more sense now

I think that's the problem for the NAS though isn't it, to provide support for 'different' ways of thinking whilst at the same time providing support for families dealing with children/adults who don't have the daily living skills for any sort of independent life (and may well require 24 hour care). I suppose the way that ds1 thinks is actually the least of his problems iyswim (in fact I don't see the way he thinks as a problem at all, I find it quite amusing and he is always picking up on stuff that I miss).

I'm not sure how one organisation can deal with that. Or whether we should really expect it to.

In part though I think the research literature also has to change and stop viewing those with LFA as uninteresting versions of HFA who just aren't capable of doing very much....

Not much to change then

Filz, yes, and it's not just children either. I've given up listing how many services I can't use at the moment. I just live a life that avoids them. In theory I can go anywhere, do anything, but I can't, not even as an adult with AS doing what I do for a living. I have to have help if it's something new, but I've always, always had to sort that out myself/pay for it myself if I can find it, alas. No support services at all for me.

When I've tried to access services that didn't want me, I got some very scary reactions, or I got just ignored by the people there. There are so many ways to make someone feel unwelcome if the attitude is "We wish you weren't here".

I was left in tears so many times . Even in the autism charities, there is often the assumption that if I can talk, that means I don't need help. The other day one contacted me to say "Oh yes, we're running an event on Sunday - do you want to turn up and help at it?" Yes, I'd love to, but the planning that would take would be immense, and they didn't even think to ask or offer it. I had to not go to a big social services meeting that was about disability accessibility, as they failed to send me all the details I'd need to allow me to get the courage to go there. No, really. You couldnt make it up! I've had to send in my advisory thoughts by email instead. I'm sure they won't forget that bit of feedback .

So much to do...

I know what ypu mean JJ and I know that its hardest when your LO has no verbal skills but DS1 doesn't have much hope of truly independent living due to the other aspects of his dx- you know what they are

amber do you think that more separation would help you? So people would stop comparing you to someone with LFA and therefore accept that you need help as well.

I thought your letter to Communication very clear, but iirc it was published next to the letter from the mother of a 9 year old girl who was G&T and 'chattering away next to me' and went on about what a wonderful gift it was and how she was such a great mum because she fully accepted her daughter for who she was (I'm paraphrasing, probably unfairly ) That 'gift' image is becoming increasingly strong and threatens to outshout your sorts of experiences. Do you think more separation would allow people/service providers to examine in more detail the needs of individuals rather than lump people together.

oh amber, how frustrating

Jimjams, yes, if answering solely for myself, I'd like more separation, definitely. Not least because if I'm in a group with other individuals who are showing challenging behaviour, it's actually potentially very scary for me, and I might be just as scary for them if I forget that I'm not in an NT group and I'm not supposed to be making eye contact etc! It just gets really confusing for all of us.

I'm delighted that people are starting to be positive about AS, for example, but it's often the wrong sort of positive. Instead of accepting us for who we are, they want to say "hey, brilliant gifts - what a great disability!". If it's a bad day, that deserves a poke in the eye (not literally - I'm anti-violence ). i don't want to be patronised, but neither do I want to feel like they think I have nothing to stop me from being as normal as the next person (whatever 'normal' is). It should be possible for people to respect us as individuals and find out what works for us.

I guess what I'm saying is that no matter what our level of 'ability', we're all worthwhile, all interesting, all equally worth our space on this earth. If only people (the ones without disability experience) could get their proverbial heads around both this, and the need to offer the right help if it's needed.

"I guess what I'm saying is that no matter what our level of 'ability', we're all worthwhile, all interesting, all equally worth our space on this earth. If only people (the ones without disability experience) could get their proverbial heads around both this, and the need to offer the right help if it's needed."

Ah yes I agree. Instead of measuring everything against 'normal'. And aiming for 'normal' if someone doesn't fit.

I think there may be more separation in the future..... Some whisperings are going that way (diagnostically etc I mean).

Yup. I wonder what the USA will get up to with its DSM V? They were planning at one stage to put HFA and AS as being the same thing. Wonder if it'll end up that way? Two more years to go until we find out.

Actually this has been really useful because I think I've worked out what my problem with the NAS is (well one of them ). I think it (as an organisation) is focussing too much on autism being a difference, rather than a disability. I'm not up to scratch with how the Think Differently campaign developed so I may be being unfair, but the first leaflet I saw was (imo) dreadful. There was no-one remotely near ds1 on the spectrum represented - there was one person with the caption 'X chooses not to talk', which was fine, but not a good generic 'this is what it means to be non-verbal' for the outside world. If ds1 was choosing not to talk then I wouldn't have a problem with him not being able to. When I have seen NAS attempts to represent severe autism they've tended to show people who can pretty much access anything which I don't believe is representative.

I guess I think the NAS should stick to support for whoever they decide they want to support. If they start getting into the gift/autism is a great thing to have rhetoric then they're going to alienate a lot of people.

DSM V could be interesting. Some talk about putting sensory stuff back in (which they should imo).

Yes, if you read the stuff written by those with an ASD, the sensory stuff is a really important thing in our lives, but the doctors had got themselves obsessed with noticing only things that could be directly observed, not how we felt or experienced the world. I think the original professional AQ list doesn't even have eye contact on it as a diagnostic thing.

The NAS "think differently" campaign? It was their "I exist" conference (to explain to people that there are adults on the spectrum) that forgot to make it accessible for adults on the Spectrum . No agenda, no details of the building, echoey room, unannounced social event immediately afterwards in a very crowded echoey tiny space so we could 'network'. Bless... . Me and another guy with AS were plastered against the radiator, too scared to move. But they were gracious about saying "oops" afterwards and learning from it. Luckily I'd been driven there so didn't have to use emergency measures to get home again afterwards.

I think I exist part of it, but it had other strands to it as well.

They're just as bad with their support from parents. From befriender matchers who turn up an hour late (no problem for ds1, huge problems for other children they did that to), to asking us why we couldn't just shut the door and tell our children to stay away when we're on the phone .

Too corporate these days!

Agree completely about the sensory stuff. How can anyone understand autism without considering it? And yet time and time again that happens. Lucy Blackman's book where she talked a lot about her problems with depth perception really changed my understanding of ds1 (I knew he had problems with depth perception, had no idea how disabling that could be).

Amber can I ask- you speak about people with challenging behaviour but ds1 is as / hfa and very violent- have had to use restraint 3 times today. I know he's not alone in this. Do you think a categorisation by dx alone would cut it, or does there just need to be a wider amount of groups available?

I wonder if the 'atypical' label should be more widely used as I do think its unfair that kids like mine (a gift? oh I love him dearly but that aspect of him isn't, for him either) cause bias against the more 'typical' non aggressive AS kids, a bias that often shows up in MN threads when any kid with SN is labelled a risk. It might also give kid lke ds1 access to help often reserved for LF kids (like SS funds) but which is needed if they are to function outside prison as an adult.

Which sounds very down on ds1 and I'm not at all, its just that I am aware he is borderline for exclusion due to this and yet SS etc. refuse help as he's not severe enough (it was dp's we wanted to help pay for someone to do stuff acclimatising him to sensory overloads such as the supermarket as suggested by his Paed).

Peachy, really not sure. It's a bit like taking a swimming pool full of water and asking someone to divide it into three or four bits rather than just one or two. Would we divide it by depth, by length, by width? I think the autistic spectrum is a very three-dimensional thing - people can have such different needs that clash with each other that it's going to be almost impossible to make a 'right choice' about where to divide support services. Especially for those with more than one child on the spectrum, which quite often happens.

I was banned from something just in case I was dangerous, so I've been on the receiving-end of the "all children/people with SEN are dangerous" thinking. Not sure what they thought I might do...presumably arrange something in a dangerously neat way .

So difficult, because he could do with really good services, and so could you. If there's a way to get help based on what I'd call 'risk assessment' then that would be brilliant, I'd think. I certainly know of two lads in the same situation as yours at the moment, and it's a real worry for the parents and for the lads too, since they don't set out to cause trouble. Son was functionally kicked out of one school for misbehaving. The law doesn't often understand ASDs or many other disabilities very well, alas...

I think a big problem for accessing help from SS is the way that needs are defined. So ds1 comes under the learning disability team. There's bugger all out there for him, but they do at least know which department he comes under. SS struggles to know where to place something like AS which isn't really learning disability and isn't really mental health. In some ways I'm a fan of labels but they can also be exclusive and prejudicial.

thing is, ds1 may have ld- he has very severe dyslexia (sifficient enough that he has a trained teacher as 1-1 8 hrs a week in addition to his statement atm ), the school have asked edpsych to reassess as many of the diagnostics assessments diont seem to fit- for example the great SSALT at age 16-21 level? apaprently at school most days he just squawks and srims, they were shocked to see the report. And the IQ- he shows no evidence of it eithre.

Unfortuantely there is currently no Ed PSych available athough being on the emergency list he should see someone within 2 years.

GRRRR

I do feel that we are brushed aside in two ways- ds3 despite his level of asd (he is verbal now but not conversational, which is a great term used earlier)is left out because he's not challenging, the Paed says he is unusally passive; then we have DS1 with all his stuff- the silly thing is that we can get childcare etc for ds3 like a shot, but not ds1 and that's the biggest issue atm- right now I feel like i'm at the end of mat leave but still OK on it, I know that soon I will start to feel very isolated and am already feeling as if I have wasted my degree becuase there is nothing I can do with it- I'm stuck iykwim.

I don't think it's that unusual for young children to be passive. DS1 certainly was and although I was concerned that he would be overlooked because of it tbh his newfound lack of passivity hasn't translated into extra help. The help we have received from SS has been because he attends an SLD/PMLD school so they expect to provide help. He didn't get anything when he was in mainstream.

Here to qualify for the LD team the individual's IQ has to be below 70 iirc. (Might be 50, think it's 70), so it's just a straight cut off according to how someone performs in Psych tests rather than paying any attention to daily living skills.

Childcare is always the issue though isn't it? Nothing here that's enough for me to be able to get a job in normal working hours. It's one area where the govt could make a real difference.