Here some suggested organisations that offer expert advice on SN.

AS is not mild autism

(76 Posts)
zzzzz Tue 06-Aug-13 22:49:21

Someone said this on another thread, and it's got me thinking.

I know that the new criteria (American not ours!) has done away with Aspergers as a dx and lumped everyone together under one dx "Autism" or is it ASD?

I personally like the separation of facets of the disability, so that someone with what we would have called HFA is now described as Autistic and Language disordered (mild, moderate or severe) and presumably someone with AS would now be described as Autistic with perhaps semantic pragmatic disorder.

I don't see AS as mild Autism, but I do see it as Autism without the very real problems brought on by more extreme communication difficulties. That's not saying it is necessarily easier or harder just a different presentation.

PolterGoose Wed 07-Aug-13 10:36:57

Returning to your OP zzzzz and I really don't want to disagree with you, but I'm not sure I'd want ds described as 'Autistic with...' as I personally hate 'autistic' as a descriptor. I'd prefer a diagnosis of 'Autism' with added detail describing specific difficulties and strengths, eg summaries of thorough SALT, OT and Ed Psych assessments. Instead all I have is a letter from a paed confirming dx of Aspergers plus a hotch potch of mostly inadequate assessments (except OT) none of which explain ds's needs well and none if it is pulled together into a coherent and complete assessment.

I'm also going to take issue with this:

I don't see AS as mild Autism, but I do see it as Autism without the very real problems brought on by more extreme communication difficulties. That's not saying it is necessarily easier or harder just a different presentation.

... because that does sound like you're saying that Aspergers is both without 'very real problems' and that it doesn't bring 'extreme communication difficulties'. I disagree with this too.

SallyBear Wed 07-Aug-13 10:45:57

There is no hard and fast rule to Autism, in my opinion, and we all have our own personal demons. Most of us would be grateful for acceptance of our children's differences and for acknowledgement and the right support from the relevant bodies. This is why campaigns like the This is My Child need to succeed. Not just for the wider public to understand and appreciate but also for all those professionals out there who need a kick up the arse to realise that many of us are battle weary and just want our kids lives to be that little bit easier for them, in the long term.

purpledemons Wed 07-Aug-13 11:17:31

I flip between using Aspergers/HFA/autism/on the autism spectrum to describe my DS. His dx says 'ASD (specifically Asperger Syndrome)', plus comorbids (ADHD, dyspraxia, anxiety) so I feel all of those terms can be accurate. His needs certainly aren't mild, and I'd say they aren't really subtle either, and he gets a very high level of provision, Higher rate DLA etc. His specialist school describes him as having 'severe AS'. I have friends with dc who have severe classic autism and on the face of it they seem to require much more support, but perhaps it's more that I'm used to managing DS's higher functioning needs.

I think some people do get misled that AS can be mild/just a geek types so I tend to modify my language and use 'on the autism spectrum/has autism' when I have to describe DS, otherwise they can be very dismissive of his needs. OTOH, he is high functioning enough to 'pass for normal' in some situations, and I get worried that they'll be put off if I describe him too severely, so I'll say he has AS so they'll be aware that he might be a bit different but not so much that he doesn't recognise danger or would require constant support.

ouryve Wed 07-Aug-13 11:26:12

DS1 had a huge vocabulary when he was diagnosed, but thankfully, his lack of actual useful communication was picked up on and his was given a diagnosis of autism, rather than AS. Despite excellent technical use of language, now, he still receives a lot of support for the ADHD he's subsequently been diagnosed with and no one has turned round and said that we need to consider him as having AS rather than ASD, even though that's how he presents, now.

He is every bit as disabled as his non-verbal brother. He's more inflexible than his brother, if anything.

zzzzz Wed 07-Aug-13 11:44:05

I don't think AS is without problems! shock. To me individuals with AS provide a very important window into a rather muddled picture.

But if you are asking me if I think it provides additional challenges when your child is non verbal, or has a very low IQ, or is perhaps deaf or blind or has epilepsy on top of the very real problems associated with being autistic, I would have to ask "how could it not?".

I think you can extremely verbal with mild, moderate or severe autism (I agree reads autism better than autistic), and all these individuals would be described as Aspergic. I also think you can have mild autism but severely restricted verbal communication.

Other facets of disability will often mask deficits and strengths. Humans compensate, and compensating allows people to function beyond levels expected.

I suppose now I am left pondering what I DO concider the core characteristic of autism. I don't think the ability to communicate is fundamental at all. Perhaps the ability to make sense of that communication and give it appropriate weight and context?

I'm not really looking for acceptance, though frankly it would be nice to take a break from explaining. I'm looking for clarity. I'd like everyone to know what provision there is. I'd like parents to know what therapies help. I'd like people to understand what it's like to BE that person with the obstacles in their life. What everyone does with that information is up to them. But the situation as it is is daft.

zzzzz Wed 07-Aug-13 11:56:19

I think I'm getting too waffley,

IMO, AS is verbal autism, and can be mild, moderate or severe.

But, I think people tend to identify themselves as AS if they have mild to moderate autism, and flip to describing themselves as having autism if they are more severe. Perhaps this is why people assume less impact if you use the dx AS.

amberlight Wed 07-Aug-13 14:59:51

Glad my post was useful.
Now DSM V is out, ability to speak has been removed from the diagnostic stuff altogether. If you'll forgive the link to Autism Speaks, have a stare at www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria
Autism is about social communication difficulties, rather than language difficulties. It's also about restricted and specialist extreme fixed interests/timetabling needs. And it's about things like sensory differences for 8 out of 10 of us.
The stuff about learning disability or lack of speech has now all gone. Those were separate disabilities that some had as well as autism.
Autism co-exists with a lot of other stuff for many of us. Mine co-exists with dyspraxia, faceblindness and major sensory processing difficulties. It also co-exists with arthritis, spinal scoliosis and recovery from a very tricky form of cancer. And I get very dispirited when people wander up to tell me that I have 'mild' difficulties compared to their child/relative/whoever else.
Do I enjoy life? Yes. But it's a heck of a restricted and specialised and supported life, and it's taken 50 years to piece it together with the help of a heck of a lot of other people. A bit like a teetering house of cards that may fall apart at any moment.
Most never find that lucky support network that enables that to happen.

There's certainly a good few with the original Asperger syndrome diagnosis who are reluctant to be called autistic. But I am not ashamed of my autism.

PolterGoose Wed 07-Aug-13 15:53:25

Thanks amber flowers

Could you explain what you mean about faceblindness? Ds can't 'read' faces but he also can't pick out a face from a crowd, for example, I have to stand in the exact same place straight in front of the door when I pick him up from school, otherwise he cannot see me in the crowd, which inevitably leads to meltdown... What can I do to help him?

zzzzz Wed 07-Aug-13 16:30:53

Thanks for the link amber. (What irritating typos! Says the typo queen. grin )

It is good to highlight the social communication as apposed to non-verbal communication. I need to think about that more, but I can see it is key to the dx. ( coffee you are right, this thinking lark is troublesome!)

Ds is hair trigger about facial expressions/emotions. We can have silent "I want cake", "get down off that chair", "oh please", "oh alright you rascal", conversations using just facial expression with no problem at all. But his social interaction could never be described as normal, his language is too disordered. It would be like discussing how "graceful" someone was danceing in a messy playroom if they were blind. IYSWIM. How can you judge?

I agree with moving too, perception does come into it. One persons severe is always going to be another's moderate. I'd go a step further and say that enviroment plays a huge part too. With adequate funding, housing, schooling etc, disabilities can be far less disabling. For example ds is HE now, so no fights about getting to school, no wound up child who has been mishandled ay school, not so tired, academically challenged etc. He is far less disabled than when we were trying to walk in step, and I have more not less time to parent ALL my children.

amberlight Wed 07-Aug-13 17:25:36

Poltergoose, yes, that's it - can't recognise people from their faces. I learn to recognise them from height, build, clothing style, hairstyle, specs etc. If they change hairstyles, I've no idea who they are. What helps me is people having something distinctive with them. Umbrella, hat, flower in their buttonhole - something that means it's definitely them. If you can come up with that as a code, he can scan for that item in the crowd. And try to stand on the edge of a crowd to make it easier. Most people with autism (not all) have difficulties with facial stuff.

coff33pot Wed 07-Aug-13 17:47:29

Yes have that issue with DS. Put my hair up with a clip a few weeks back and walked accross school car park to collect him. The teacher waved and pointed at me but he refused to run forward to me and had to give me a good stare until I let my hair down half way accross!

tacal Wed 07-Aug-13 18:59:06

My ds gets really upset when people change their hairstyles. He also needs me to stand in the same place when picking him up from nursery. Maybe he has faceblindness. Very interesting thread.

seaofyou Thu 08-Aug-13 19:42:02

Most people with AS are far from mild! They mostly have several other types of disorders that overlap. They may have a PhD in Computer Science yes, but is that what they call HFing? When they can't live life without google calander to time manage every 5 minute block of their life otherwise they meltdown/regress for rest of day/week.

Society compares AS to ASD as diet controlled diabetic to insulin dependant diabetic. It can't be measured as different triggers incl sensory, environmental challenges etc can cause the severity to change on a day by day/minute by minute basis.

However no you cannot have LD and AS. The IQ has to be average or above in the ICD-10 and LD diagnosis is below 70. But it doesn't mean the person with AS has a 'milder' version of ASC. Motor delay is a more common marker of AS.

From going from a LF autistic child to classed as HFAS now the LF/HF is to do with level of independence as ds can use the toilet/dress/brush teeth, do math, use a spoon etc The severity of ASC however is still severe in ds = social/communication/imagination/sensory.

zzzzz Thu 08-Aug-13 19:46:12

My understanding is that LD includes things like dyslexia, language disorder and processing disorders, not that it is shorthand for low IQ.

PolterGoose Thu 08-Aug-13 20:02:49

That's my understanding too zzzzz although I do get confused with learning disability and learning difficulty as surely any learning difficulty is disabling confused

And then of course there is the argument that IQ is a really poor measure of learning ability, academic potential and 'intelligence'... but that's a whole other debate.

seaofyou Thu 08-Aug-13 20:07:28

IQ is very important for where a person gets services from 'LD' team or not. If IQ is above 70 they wont be eligible....well not in my area anyhow! But that is the 'magic' number and I say 'magic' as in you get more help having 69 and none if you have 71!

Dyslexia like ASC and AS is a Developmental Disorder or Learning Difficulty.

PolterGoose Thu 08-Aug-13 20:14:33

And that's part of the problem sea because many people with ASDs and other conditions may be measured as having an IQ above that threshold but may be completely incapable of applying their 'intelligence' in everyday life, hence children being failed in schools, hence a huge over-representation of people with neuro-developmental conditions in prisons, hence low levels of employment among people with ASDs (as per amber's post I copied in here) etc etc. It is wrong that services depend on such a blunt (and arguably flawed) instrument.

Eyesunderarock Thu 08-Aug-13 20:21:27

I did an IQ test long ago at uni and failed miserably.
It had been designed by Black Afro-Americans from LA gang cultures as part of an extended project to show that all IQ tests prove is the ability to pass IQ tests, and that the best indicator of success was to begin as a white middle+ social group male member with mainstream cultural interests.
I'd say DS has a learning disability as a direct consequence of the way his AS enables him to process and understand and act on information.
DD got 11 A* at GCSE, but the inflexibility of her learning style made certain A levels harder as she found it difficult to learn in any other way but her own.

Eyesunderarock Thu 08-Aug-13 20:22:54

Bother. She's just reminded me it was 12 GCSEs.
<parentfail>

seaofyou Thu 08-Aug-13 20:40:41

That sadly is crux of it Polt when going to adult services. So although IQ is not an 'indicator' of ASC diagnosis it does effect level of support when an adult. Very worrying! So 'severe' ASC/AS adult will not get help as IQ is high.
The most vulnerable without a shadow of doubt will be the boarderline and HFing as they will not have that support but will still have social/communication/imagination/sensory difficulties ie ds as adult may still not be able to leave house/open a window all summer as terrified of flies!

Do you have a link to that article on LA gang IQ test. I do agree you can be trained to pass an IQ test and yes nothing to do with severity of the actual ASC/AS.

zzzzz Thu 08-Aug-13 20:48:36

sea I'm not sure that's right. Can you link, wiki seems to say dyslexia is a LD confused

Eyesunderarock Thu 08-Aug-13 21:07:47

Sea, I was at uni in the early 80s. No internet, no PCs, no link. grin

zzzzz Thu 08-Aug-13 21:09:15

Even more confused

seaofyou Thu 08-Aug-13 21:20:52

No probs zzzz your welcome smile

here

here

seaofyou Thu 08-Aug-13 21:22:18

Did wiki mean Learning Disorder zzzz? Too many LD terms these days!

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