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Here are some suggested organisations that offer expert advice on special needs.

Anyone know about grades of autism?

97 replies

LoveBuckets · 10/04/2009 20:08

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

OP posts:
amber32002 · 10/04/2009 20:19

Never heard of it. There's all sorts of autism, but even the experts are having to rethink a lot of what they thought they 'knew' about how to classify it. There's normally Classic Autism which comes with a lower IQ and often some very clearly different behaviours. There's Asperger syndrome that has a normal or higher IQ. There's High Functioning Autism that is so much like Asperger syndrome that the experts can't quite remember why they gave it a different name. There's also several almost-autisms with various names.

Er, not sure that helped. Sorry....

Sassor · 10/04/2009 20:46

There is a lot of disagreement about the different categories but broadly speaking the more speech you have the higher up the spectrum you go and non-delayed speech = asperger's syndrome. It's more complicated than that, but broadly speaking.
We follow a home programme with my little boy called Relationship Development Intervention (RDI) www.rdiconnect.com which categorises autism into stages and these will be very different from the usual spectrum. So, for example, it is possible for someone with severe autism (no speech) to be at a higher stage than someone with Asperger's syndrome because it is measured in terms of the actual universal deficits of autism. Fantastic therapy by the way.

lingle · 10/04/2009 20:57

"There's High Functioning Autism that is so much like Asperger syndrome that the experts can't quite remember why they gave it a different name"

chortle!

PipinJo · 10/04/2009 21:09

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vixma · 10/04/2009 23:14

Is dyspraxia autism?

amber32002 · 11/04/2009 08:03

vixma, I think there are 'dyspraxias' that are really autism, but it can be a separate thing with no autistic elements to it. If it's got obsessions and social problems as part of it, then I'd say it's possibly misdiagnosed autism. If not, it's probably dyspraxia. Just my personal view as someone with both - I'm not an 'Expert' with a capital 'E' so can't diagnose a thing

Trouble is, very few specialists exist for adult autism, so they often don't know what it looks like and doctors can end up directing people down the slightly wrong diagnostic route. If someone has Asperger syndrome, there's often lots of motor problems, balance problems etc. And if faced with an adult woman who can speak well enough and isn't misbehaving in the surgery (!) but seems to have difficulty with balance/motor tasks, most docs wouldn't think to look beneath that at whether there were autistic traits too. Or they misdiagnose as anorexia, or OCD, anxiety, depression, schizophrenia - anything but what the person actually has. And give them the wrong treatments for each of these. (sigh)

mumslife · 11/04/2009 11:33

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troutpout · 11/04/2009 17:46

lol at Ambers first post
ds's dx reads High functioning Autism/Aspergers.
I guess most people realise it is one and the same thing now.

mrsturnip · 11/04/2009 20:51

A lot of the AS/HFA division depends on local politics as well.

kettlechip · 11/04/2009 21:12

One of my best friends works in autism research in a big uni, (Jim jams always reminds me of her!) and even she didn't know the official answer to the HFA v Asperger's question, which made me feel better for not knowing.

Is Asperger's more subtle in the early years, and more pronounced in adulthood than HFA maybe? Or do they pretty much blend into one once language delays are resolved?

I can only think that descriptions of dc's with HFa often sound like ds, yet dc's with Asperger's rarely do. I don't know if it's something to do with the obsessions, sensory issues, or what, but my gut feeling is that ds doesn't have Asperger's, but I could see that he possibly does have HFA.

kettlechip · 11/04/2009 21:14

And to answer the OP, no clue what Grade 1 autism is, never heard of that.

JuxaLOTmoreChocolate · 11/04/2009 21:23

amber, am interested in your first post. I used to work with an autistic child (girl) who was very very clearly classically autistic, but was highly intelligent. Yet, she was non-verbal at 8yo, no eye contact, no pretend play, perseverated, etc etc etc. Am not arguing with you btw, but interested in how she fits in.

meggymoosmum · 11/04/2009 22:46

I heard someone talk about autism in grades too a couple of weeks ago, and no idea what it means. This was in fact some woman i've never even met, talking to someone else out loud about my dd - 'huh, well if she is autistic, she's only grade 2 or 3'

It doesn't answer the original question.. but i found this interesting The paediatrician gave our dd a dx of 'autism'. When i asked 'where on the spectrum? autism/HFA/aspergers?' he replied that he "didn't like to think of it as a spectrum disorder because that implies that some children are more severe than others, which in turn implies that some familes have it easier than others. Any level of autism can have a severe effect on the family."

I thought it was refreshing opinion for a proffesional to have. Maybe not 100% helpful, but refreshing

4nomore · 11/04/2009 22:54

Our paediatrician said a similar thing (about spectrum placement labels) when diagnosing my DS as an undifferentiated ASD but I discovered, the other day, that the Autism Advisory people will be doing an assessment on him in the next few months which will attach a provisional level or grade on him. I suspect that at some point this will get added to his DX. I think that a lot of paediatricians (well, ours anyway!) are a bit uncomfortable sticking autistic labels on kids under five (unless they're very profoundly affected with "classic" autism) and like to hold back a bit and see how the child progresses.

amber32002 · 12/04/2009 07:18

JuxaLOTmoreChocolate, that's a bloomin' good question, which is why many of the experts have given up even trying to classify people fully at the moment. There's an international 'think group' working towards a new set of diagnostic criteria for DSM V in the USA, but SO much more research needs to happen before they can report. I think the reporting date is being pushed back further and further at the moment.

A child who is classically autistic, highly intelligent, non-verbal at 8yo, no eye contact, no pretend play, lots of repetition? To their embarrassment, many of the researchers are finding that supposedly "low IQ" individuals with autism have actually got very high specialist IQs (rather than general common-sense IQs), but since our behaviour is SO different to that of other people and our communication with people is often irrelevant to us, no-one knew it. They thought all the repetition was just some sort of motor problem or random brain activity.

When they started to really analyse it, they realised there are subtle patterns to it - often too subtle for anyone else to see unless they apply computer technology etc.

An example for you: As a child, I spent probably 300 hours picking grass apart to look at the insides of the seed bit. Pick up a piece of grass, open it, look at contents. Pick up a piece of grass, open it, look at contents. Repeat that thousand upon thousand of times. You'd think I was doing nothing apart from obsessing, yes? Nope, I was analysing the different genetic possibilities for that particular type of grass. How did it grow, how often did it develop differently? I just had no reason to talk to anyone else about it. It was my grass, my research, my interest. It's not my fault if other people thought it was just stupid random repetition.

Simon Baron-Cohen talks in recent papers about profoundly autistic individuals who, for example, shake a piece of string. He's realised that in some cases they're studying the physics of it - how fast do you have to shake it, what happens when you do, how do different lighting conditions affect the visual results. It's caused him to rethink what he thought he knew about autism. Someone looked at a child who had drawn hundred upon hundred of the same picture over and over and over again. They didn't see the pattern changes. A computer did. It wasn't the same picture - there were subtle predictable variations happening. They were apparently testing how far they could alter the picture for it to be the same picture.

Is this true of every autistic individual? No, it isn't. Some really are profoundly learning-disabled. But many are highly intelligent but have absolutely no interest in interacting with you or playing with you. None at all. We're extreme specialists. So extreme that most people have NO idea what we're doing, or why.

As for the whole "mild" and "severe" thing, don't get me started. I'm in agreement with many of the experts who say that we have no idea how to define it right now, and we really shouldn't try until we've got more research done. I'm minded of a chap who told me that no way could I have any idea at all what REAL autism was like as Asperger syndrome was so mild that it was irrelevant. Scarily, he was running a major parent's help board for autism and Asperger syndrome. He's a wiser man, now. You can have mild autism and mild Asperger syndrome. You can have severe autism and severe Asperger syndrome. There is no clear mild-severe boundary in either case.

LoveBuckets · 12/04/2009 08:53

Amber do you think that the seemingly-repetitive research could be a kind of self-soothing task? That to focus on something that intently would help block out all the interference and sensory noise? In the same way that stimming might be a form of self-hypnosis?

BTW I read that HFA label is used more in the USA than AS simply because the word autism has more resonance with people and therefore a person with HFA will have better, quicker access to different support networks. IE whilst there is ignorance in the UK, it is nothing compared to the ignorance in the US, simply due to the size and geography. Bit of a self-sullfilling prophecy though, by protecting the person from ignorance about Aspergers, nothing gets done to raise awareness.

OP posts:
misscutandstick · 12/04/2009 13:24

kinda OT but i wanted to ramble this somewhere and in reference to what Amber has posted, it seemed the most appropriate place.

DS4 (3.11y) was sitting in the front of the car with me, chatting away as usual - he doesnt need input just space in the airways to say all that he wants. It was the same sentence over and over (as usual, but each time its a different sentence) this time it went "thats very silly" - usually it has about 8 words that he just repeats in different tones and speeds. After about 5mins the same sentence was begining to grate a bit, until i LISTENED. I started to count the 'very's he was using.

Thats very silly, thats very very silly, thats very very very silly silly silly, thats very very silly silly, thats very silly silly, thats very silly silly silly... and so on. It was actually very very irritating!

Then i realised... what was worse? him saying it in a variety of ways... or me sat counting them???

Incidentally the Paed says its "definately not Autism" and that its probably specific language impairment. im as he has very many "routines" and sensory issues.

misscutandstick · 12/04/2009 13:27

ds4 has routines, not the Doc

actually, thinking about it the doc may have routines too, i dont know him at all

mrsturnip · 12/04/2009 15:23

"A child who is classically autistic, highly intelligent, non-verbal at 8yo, no eye contact, no pretend play, lots of repetition? To their embarrassment, many of the researchers are finding that supposedly "low IQ" individuals with autism have actually got very high specialist IQs (rather than general common-sense IQs)"

Yes this would be ds1 and his visual & map abilities. He does amazing stuff all the time. Most recent one was last week driving along the local fast road he started shouting 'eh um eh um' and tapping his head- this is 'hair cut hair cut'. I realised he was pointing in the right direction towards my hairdresser's house - he doesn't get his hair cut there but has been there. The thing is this house was a long way from where we were- apparently you can just about see it from where we were, although I've never managed it. But we weren't on the route towards it, we drive a completely different way and direction to get there (we were driving north form our house say, and we drive south east to get to the hairdresser's house) would driveso he'd either spotted it with his owl eyes (from a totally different position than we've seen it in before) or he;d worked out the direction - from some sort of map representation in his head. Neither of the other children would ever be able to work that out, add in the context of ds1 was an unmeasurable IQ (not possible to assess him) and working at p3 or something and you see really how clever that was.

I will add though that I think some families do have it harder than others, that some children are more severe that others and I think it's not helpful for them to pretend that isn't the case. Some children with autism cannot go outside without 2 adults with them at all times, they cannot access any activities at all- not mcdonald's or the beach, or the cinema or a shopping trip, they may be unable to take a simple walk, nor can they communicate with anyone at all in any way, they may constantly show self-injurous behaviour and not be toilet trained as adults. To suggest that they're the same level of severity as someone who can access mainstream playshemes and who will be able to go on and live independently is not helpful nor fair. No-one gets upset suggesting different levels of a physical disability so I don't know why it's often seen as unacceptable to suggest there are different severities of autism. Of course there are. There may be problems defining them, but there are certainly different severities.

4nomore · 12/04/2009 17:58

That's the thing isn't it? The "experts" need to sort out what autism is and how to grade it in a way that is useful and not so generalised as to be meaningless. I'd've thought this would probably require several different scales (for sensory issues, language problems etc) and it would still just be a general guide rather than an exhaustive description of how any individual is but better than just HFA, LFA, Aspergers. I know a lot of things associated with autism are often classed as co-morbids not core autism but everything commonly associated should be addressed not just a "grade" sort of averaged out because that doesn't tell anyone anything much.

tclanger · 12/04/2009 18:00

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meggymoosmum · 12/04/2009 18:06

Sorry, mrsturnip, didn't mean to offend you.

amber32002 · 12/04/2009 18:36

tclanger, he's getting there, but it's taking a long time to get him over the brain haemorrhage. He's having to work in short bursts and do a lot of resting, and that's SO difficult for him. Much more testing to be done this month.

4nomore, MrsT, yes, agree. When I had my testing done, they produced a huge report that detailed every possible thing I was or wasn't good at, rather than simply grade it. I think that helped me a lot.

mrsturnip · 12/04/2009 18:38

you didn't offend me honestly. It's something I feel quite strongly about in part because of issues I have with the nas but also because of the lack of research etc carried out on children like my son and more particularly how that is resulting in a whole group having very little voice. To the point where stood in an international autism research meeting I heard one researcher say I didn't know there were people with autism who can't speak' (WTF)!

I think donna Williams talks a lot if sense when she discusses the spectrum and issues such as severity.

amber32002 · 12/04/2009 18:40

What the heck was that researcher researching? Bus tickets? Leaf patterns??! If it was autism, I shudder to think what sort of research they're coming out with!