Anyone know about grades of autism?

[LoveBuckets]

Just wondered, heard someone referred to as having Grade 1 autism recently and was too chicken to ask what it meant.

Well precisely Amber. But I think if you've just read the peer reviewed research literature it's perhaps the sort of mistake that would be made. The severe group (severe in terms of something like CARS) is massively under represented.

So between us, do we know anyone who has actually taken part in any research? Seems to me that there are so many families living with autism in the UK who have some really useful anecdotal evidence but nobody is asking the questions. Most of us get the DX (or not in many cases) and feel kind of dropped in the ocean so that kind of rough guide could be helpful. Do the NAS ever do any informal surveys?
I know the whole Treating Autism thing is controversial but wouldn't you be interested in a big survey that asked whether people felt each treatment had had lots, some, worsening or no effects at all? Or what symptoms were the most/least common or get grown out of. Or asked how long your DLA app took, how many times you had to apply, etc. I know it's not scientific but
it's interesting and might inspire proper research in useful directions. I guess I'm just thinking that the MN SN forum is so useful, we should bottle it somehow! Anyone fancy compiling the book?

I'm running a research study On severe autism.

Take a look at IAN (interactive autism research network) - they do the sort of thing you're talking about but with American families.....

My research is advertised on the NAS research database btw - a good place to look to take part in research if you're interested.

My 10 year olsd. Has little speech. Severe learning difficulties. Got a superb memory for places and people. Repetetive obsessions like spinning objects, anything he can get his finger into. favourite is a coat hanger, cant be any coathanger, but will be a specific one on a certain day!!!!! Will go into my wardrobe and find that he has taken all the clothes off hangers to find 'the one'. He doesnt socialise very well with his peers, he prefers adults. Doesnt play on his own. Have been told that he has autistic characteristics but is not autistic. How do you work that one out!!!!

mrsturnip. had a look on the IAN research and it was only for US citizens, am i looking in the wrong place??? Is there any UK research ??

I totally agree that different families have different challenges with autism. But perhaps the doctor was trying to say that even mild autism can cause a lot of family disruption. Our ds would probably be described as HFA (our paed doesn't like to classify severity as she doesn't think it ishelpful) in that he is in mainstream school and verbal. But he has lots of issues with aggression and anger and means we are restricted a lot in what we do. Out today Istill have to watch him all the time (he's 4.5) as he is liable to lash out.

I've alsomet children who were more 'severe' than ds, but were passive and their life seemed less disrupted than ours.

Research Autism is a useful UK site. Therapies and treatments are listed on there, with their recommendations for how well researched they are.

www.researchautism.net/pages/interventions/index

Ooh that's interesting, thanks. Did not know that Audio Integration Therapy could be hazardous!

nikos- yes I agree with that. DS1 at 2 was the easiest child I've ever met because he was so passive. But often that passivity goes as the child grows and I think there is a fundamental difference between a child or adult you can reason with in sentences who has some understanding of danger and one who is completely non-verbal, with no imitation and almost no understanding of language and no concept of danger at all.

I do know very high functioning children with high levels of anxiety which causes problems and stress of course, but they can do the fundamentals such as go and get milk from the shop with their parents, go camping, go into town and not need 2 people holding onto them, go to a cafe, go to the doctors without needing 2 people etc. I have spoken quite a lot to people about this issue over the last 18 months- mainly when it's come up in conversation at conferences and there is a feeling out there (reflected in the pages of Communication recently) that the severe group has been forgotten. (I haven't brought the conversation up - usually it's others, or someone has said something in a Q&A session and I've approached them afterwards). I don't think that people particularly think that DS1 has a tough time I think they just don't realise that children/adults exist with the condition in that form. In part I think it comes from lack of exposure. Someone working for CAHMS for example is never going to meet a child like my son. People without experience of children like my son really have no understanding of how limited his understanding is because they don't have a concept of living life without language, or how difficult that makes daily life.

I'm a bit about some of Research Autisms stuff. For example their big hazardous signs next to FC. Yes, yes proceed with caution with FC, of course, but there are people out there like Lucy Blackman who learned to type (and indeed learned language) via FC and now type independently who say they needed FC to get there. Her existence (and others like her) just seems to have been completely ignored.

Sorry yes IAN is for the US only, I just meant it asks the sorts of questions you were talking about.

Ds1 is sort of in the middle of those two groups MrsTurnip. He is very good with routines and remembering what to do and if somethign is familiar or ordered we can take him to a fair few places (though I really have to think about taking him on my own now). But because his understanding of language is still very delayed and because he can't consider the reasons "why" to do something or apply different things to different situations then it does impact a lot on him. I am quite solitary, find it very difficult to express myself or initiate things, have some mild processing difficulties, have obsessions and routines, do not think about what other people do in relation to me (unless I make a conscious effort) and am very content in my own small sphere most of the time. But I have got good receptive language and that helps me, personally, enormously. As yet Ds1 doesn't have this and it has a significant impact on his day to day life. He's not completely unable to understand, but the words must be concrete, must often be assisted with Makaton and usually must be talking about something familiar.

When children are at the higher end of the spectrum, they are expected to function more in a NT world. This can bring it's own special challenges and heartache to parents. I don't think any of us have it easy (and Iknow noone is saying this). But I think the doctor mentioned is actually being very perceptive.
My personal 'going over the edge' criteria would be if ds didn't sleep. Dealing with an autistic child during the day and then getting no sleep would be absolute hell for me.

Yes I agree that having to function in an NT world brings other challenges (such as depression- very common of course). However, I don't see the same political difficulty with saying there are different severities of say CP. I know someone with CP who needs to walk with sticks - her life brings it own challenges but I don't think anyone would say she was as disabled as the children with CP at ds1's school who can't sit up and need tube feeding. That doesn't diminish her difficulties at all, but does recognise the very particular challenges that go with severity.

I think if anyone who read Growing Up Severely Autistic They Call Me Gabriel (probably the most severe description of autism I have ever read) would ever suggest that his mother had the same level of difficulties as someone with a child who can access mainstream playschemes (so limited problems with childcare) and will grow up to live independently. After all disability is really about access (or lack of), I have met someone blind from birth (waves to wannabe) who I would struggle to describe as disabled because she doesn't let her lack of sight get in the way of her life at all. And yes I have met some people with HFA who are disabled by their condition to a high level, but what I haven't yet met is someone with severe autism - as defined by CARS,- who isn't very disabled by their condition in terms of what they can access and the amount of constant care they need.

In terms of depictions of severe autism Black Balloon is another great depiction. There's a trailer on that link. Based on a real person the chappy on there is actually quite high functioning in lots of ways (very good receptive language, and good expressive language via sign) but the film does show the particular challenges which go with the severe end of the spectrum- namely the constant supervision which is required (and is exhausting). And I think that is something that bodies such as the NAS have totally lost sight of at the moment.

I am in agreement with you mrsturnip.
A friend of mine who has a severely affected child said to me that in some ways our path was more difficult. She has a clear idea of the future, her son in special school and she thinks he will never live independently. She's been able to do a lot of her grieving for that just now.
We don't know what the future holds. I dread to think of ds living a lonely live with depression. I imagine support for him as an adult will be very patchy.
But I can see that someone that has a non verbal child must long with their whole being to hear their voice.

The non-verbal stuff doesn't bother me tbh- it;s the lack of ability I have to explain to him when he gets the wrong idea. For example 2 days ago he got the idea that he was going back to school tomorrow (throw away comment made by me, which I knew as soon as I opened my mouth that I shouldn't have said) & I have spent the last 2 days trying to correct it. Trying different ways of getting through to him that he is going back to school NEXT Tuesday, not tomorrow. I have no idea whether he understands that, but if I haven't managed to communicate that to him (and I know at 7pm he was still thinking tomorrow) then we are going to have screaming all day long tomorrow. And there will be nothing I can do about it and nothing we can do to stop it. We will just have to sit it out.

It's that level of policing that I find far more difficult. Not being able to open the front door without knowing where he is, not being able to have him out in garden alone as he scales the walls and climbs onto our balconies or scales the fences, not being able to get him to turn around when we need to walk home, and the constant tugging from where I have to hold onto him where we're on the street hurts my wrists. And the lack of receptive rather than expressive language that makes life tough. With receptive language comes concepts and through processing like mine, without that it's hard. Receptive language increases the amount of AAC you can use.

I don't ever wish to diminish the problems that people with HFA/AS face, but I think at the moment in the information that is 'out there' there is often a lack of understanding about the very different issues that come with the severe end of the spectrum. And those are problems which will be lifelong in their severity. He will never ever be able to go outside alone. Not once in his life. Never be able to left alone at home.

As an example of the lack of understanding last week I was getting a bit of hassle from a (paid) member of the NAS for not doing something for the local branch. He didn't seem to understand that I couldn't do it because I couldn't take DS1 with me and had nowhere to leave him. He seemed to think that DS1 should be able to come along. It was very frustrating talking to someone who is supposed to provide support who just totally didn't seem to 'get' our lives or issues. It comes back to the stuff I was saying earlier about invisibility (not represented by research literature, or the NAS etc etc).

I would never wish to go back to a position where the needs of those with HFA/AS aren't recognised. But I think a lot more could be done to recognise/talk about the diversity of autism. Especially by bodies such as the NAS.

I'm surprised by the NAS chap. Does he have someone close with autism? Because I can totally relate to what you describe as we have it in a scaled down version. Ds will easily disappear in shops without a backward glance. I have to watch him constantly when out because of aggression and find this very wearing as have 2 other young children. Ds would also be very inflexible if told something was going to happen and then it didn't. But I wouldn't have all day screaming and I suppose that is when the severity has a greater impact. Those working with the NAS should definitely have greater awareness of restricted lives.

And I think if you have a child who is severe often the way they process the world is completely different. So for example DS1 at the moment doesn't seem to understand sequences unless he sees the whole thing. So if he comes in and I've put the washing on and it's half way through a cycle he will completely lose the plot. Smash his head on the floor, scream the place down and won't stop until the cycle stops. I have actually written to Donna Williams to ask for advice on this tonight as I don't fully understand what is going on and everything we have tried hasn't worked.

So it's that policing I find hard. I needed to wash clothes today but ds1 then insisted on going out with dh, forgot to put them on before he left, so then couldn't put the wash on as I couldn't risk him getting back before the cycle had finished. And we can't get up in the morning until he has seen us in bed, or we get shouted at and screamed at and the walls have lumps taken out of them until we're back in bed and starting the sequence again. I think there's little out there about living with those sorts of cognitive misunderstanding- certainly I've struggled to find anything, and the 'work' I've found on encouraging an understanding of sequences is way, way above his level.

I don;t know nikos. He's the second (paid) NAS worker though that I've had issues with over their understanding. Another one told me about a family with a child with severe autism and was being very critical about them not allowing their child choices, and how they just predicted everything she needed. On further questioning (from me) it appeared that it was simply a case that the child was functioning at a pre-choice level. She didn't understand choice. She was being taught it and given options for choices, but she just totally didn't have the concept of 'this is a choice'. That is not unusual in the most severely affected, yet this worker seemed to have no idea and had certainly misinterpreted what she'd seen (and then criticised those parents to other!! !!)

I have always thought that language differentiated (if that is the right word) between asperger's and hfa, i.e children with hfa have language delay, children with Asperger's tend not to have a language delay - though they may have communication problems?

Just wanted to add my thoughts and see what you all think... no idea about grades but interested.

Yes, the language delay is usually the point of differentiation - not always adhered to and people are starting to ask whether it's a legitimate ground on which to differentiaite. Hans Asperger's original study subjects DID have significant language delay in many cases (ironically).

It should do aefondkiss - that is the dx, but often people ignore that because for older children there may be no difference between a child who had language delay and one who didn't.

Personally I think there's often a fundamental difference between children who started talking/thinking in sentences by aged 5 compared to those who developed speech/language after that time or not at all.

that is interesting about the original study 4nomore

mrsturnip, I agree, I often think my ds is like someone learning a foreign language for the first time, that his first language is not english iyswim?