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.

cardboardcactus Tue 06-Aug-13 22:56:37

Yes I agree. When I did a parents course on autism, not long after DS had his dx of AS, the convenor encouraged us to think of it as 'subtle' autism, not mild at all.

I can see why this happens, my DS has AS but manages pretty well in every day life, people take a while to realise he has SNs. However when you live with him you realise just how different he is to other boys his age, how much extra help he has needed to get where he is and how much harder every day activities are for him. It is not mild, but it can be very deceptive, it is a real double edged sword.

belief Tue 06-Aug-13 23:06:30

I agree Aspergers is not mild autism.

I also get really annoyed when people say (usually in an annnoying voice as well) "oh we are all somewhere on the spectrum arent we"
Arghhhh!

coff33pot Wed 07-Aug-13 00:04:11

No its not mild autism. And I would not know how to best describe it (and probably not in the best moods due to ignorance of joe public today but I am going to give some sort of perspective smile )

DS was dx AS but also classed as having moderate to severe ASD (which confused the hell out of me at first)

However now I can see why I think at least in my own child as all present different. His AS makes him fragile, anxious, curious toooooo social on occasion and longing for a hug (no kisses) for security. His verbal communication is excellent BUT his understanding of what has been said is a whole matter and a different ball game if he doesnt "get" the NT child/adult, doesnt pick up the mood or does and is anxious of it. This can cause extreme behaviours more prone in severe asd as in rocking, raging, screaming, stripping of clothes due to intense desire to be free of anything touching him. Jekyl and hyde situation sometimes.

AS has to me a hindrance of being able to work things out that cause distress as in being different, thinking upon a conversation/event and working out that they had been ridiculed when they thought someone was a friend etc or making a mistake and working out how to hate oneself for it. Having the ability to verbalise is great but not when social understanding is missing and that ususally ends up in him hating himself.

I have to also say that I think the underlying co morbids play a major part in how day to day goes and perhaps that is why our AS children have such a difficult time of things?

Not sure if there is a way to separate any child in levels really as all seem to have a hard time of it sad

etubrute Wed 07-Aug-13 00:30:16

My MIL always refers to a friends child who has autism who is non verbal which breaks my heart to hear it really does but she will always dis-miss anything that is said about my Ds who has AS because...he can speak like a professor. As said above she doesn't see the anxiety, the lack of social understanding, when he can't be alone because he needs me to just give him constant cuddles. Those days when everything has gotten too much and he rages because he just wants to kill himself to make it easier for everyone, I could go on but TBH I'm getting tearful.

To me (and no I am not a professional) ASD= Autistic= Autism. No matter where someone is on the spectrum they all have their own severe difficulties in different areas which has a huge impact on their lives everyday.

Eyesunderarock Wed 07-Aug-13 00:36:14

I've always thought of AS as being AS without LDs. So many things are easier and some things are so much harder. Mine has very few comorbids as well.
But yes, there are ignorant people everywhere. Which is not the same as lacking in knowledge.

coff33pot Wed 07-Aug-13 00:52:25

oooh I just re read my post and the last bit is odd. What I meant was that I think the underlying co morbids play a major part in how day to day goes for DS not as it reads above implying for all sorry x

I can say that the adhd and the sensory issues play more havoc and are harder to handle for me. With meds the AS shines through and a more anxious worried but deeply thoughtful child appears.

belief Wed 07-Aug-13 00:54:07

Nooo eyesunderarock - wipe that
Aspergers is not Autism but without learning difficulties (if that is what you meant, you may not have meant that!)

Perfectly possible to have Aspergers and LDs.
Defining difference between a dx of autism or a dx of aspergers is whether the child is fluent verbally before the age of two (assuming they fit the other criteria for dx. But a verbal before 2 child, with aspergers can still have LDs

apologies if I read your post wrong!

coff33pot Wed 07-Aug-13 01:35:39

zzzzz stop thinking its not good as it means it gets me thinking and its late! grin

Eyesunderarock Wed 07-Aug-13 07:27:04

I expressed myself poorly, belief. smile
Due to being knackered and in a rush.
Of course it's possible to have AS and LDs, and a range of other comorbids that can seem unrelated.
With my DS all the learning difficulties he had were specifically linked to his AS. So he is a good writer, imaginative and fantastic punctuation but struggled hugely with irony and metaphors.
Which was very hard for his teachers to work out.
Sorry for appearing narrow in my definitions.

SallyBear Wed 07-Aug-13 07:40:15

I have two DS on the Autistic Spectrum.

DS1 has Aspergers. Brilliantly clever, funny, struggles with change, anxious, both gullible and suspicious, is socially inept, sensory seeking, geeky, physically awkward, touch sensitive, inappropriate behaviours towards others as he doesn't quite understand other people's personal space issues but hates his being intruded!

DS4 has Autism, non verbal, incontinent, needs constant stimulation, very clever in subtle ways, walks on tip toes, posture like a question mark, understands instructions, gets frustrated, needs familiar people and things to keep anxieties down to a dull roar.

Both boys are complex, but it's a more subtle set of difficulties with DS1 that you can overlook as a parent because DS4 has more obvious attention requiring needs.

Does that make sense? So I agree that treating AS as mild autism is woefully misguided and frankly insulting.

DS2 scored quite high on all the scales in his diagnostic assessment but was diagnosed with AS because he spoke very early and his language has always been advanced.

The diagnosis we were given was Aspergers/ASD.

PolterGoose Wed 07-Aug-13 08:05:23

Thanks for starting this thread zzzzz flowers

A very simplified way of describing Aspergers is ASD plus no significant speech delay plus at least 'normal' IQ. The diagnostic criteria aren't concerned with the severity of the autism, it is the speech and IQ that determine Aspergers.

But, of course, having a normal IQ doesn't mean there are no learning difficulties and being able to speak doesn't mean there are no communication problems. It's all very illusory.

streakybacon Wed 07-Aug-13 08:07:29

IMO, sometimes AS can be more challenging as other people's expectations are higher, because people with AS appear on the surface to have fewer difficulties than those at the more severe end of the autistic spectrum. I think that's why it can be so hard to get support for people with AS - it's that much more difficult to convince the powers that be that it's necessary, as the challenges are often so well hidden.

They're the same but different. The problems are still there but you often have to know what you're looking for to see the difficulties for AS because of that subtlety in presentation.

Strongecoffeeismydrug Wed 07-Aug-13 08:22:14

Ds has classic autism and severe LD, he struggles with all aspects of his life.
I know someone who's son has AS and he struggles with all aspects of his life but I find she has it harder As her son can verbalise his anxiety, distress and unhappiness hmm
He gets upset he doesn't have friends,hates being different and is a very sad little boy, whereas ds sings through life, thinks everyone wants to see him flap about and as long as he's with mummy life is great.
So in my opinion AS is defiantly not mild autism.

PolterGoose Wed 07-Aug-13 08:25:12

Below is a post I saved where amberlight discussed this very issue on a chat thread about autism which got quite heated. The thread is gone now but this post resonated with me so I hope amber doesn't mind me using it.

It depends how we define "autism", though.

No-one would doubt that a child who is incontinent, non-verbal and self-harming extensively is not mildly disabled. But is that autism? It's a very sensible question that the experts are asking.

Autism is none of those specific things on the diagnostic list.
So it's maybe severe disability - but it's not in itself autism from that list. It's other things that can occur alongside autism. There may well be autism as well . In the past, any really severe behaviour/learning difficulty/delay was often called autism, yes. And at the time that seemed like the right use of the word.

If we have a friend who is suddenly unable to walk and is now a wheelchair user, do people tell them that their disability is mild because they are nothing like that child who is self-harming, and because they can speak in sentences? If so, how fast can we duck from a handbag round the ear from them?

Severe autism is severe lack of ability to decode and use social signalling, combined with severe lack of ability to cope with the unexpected, combined (usually) with severe sensory processing difficulties of one kind or another. That's the quick summary of the definition in the new DSM V. Many overcome those odds - but to do so often means being punished endlessly. Services withdrawn, help withdrawn, scorn aplenty if they foul up on communication. The moment toilet training happens and sentences happen, the wheels come off the support for them and their families.

Using lots of language seems like a brilliant thing. But using it without a clue of its impact on others is like saying, "my child can drive a 100mph sportscar". Great - but can they drive it safely? Can they even see where they're going? With autism meaning severe lack of ability to control social language, the net effect is "crash and burn"

Relationships? Crash.
Job? Crash. crash crash crash, one after the other.
Schooling? Crash.
Friendships? Crash. Cndless crash.
Hobbies with others? Crash.
One desperate soul-destroying crash after another.
It's great to be able to use the toilet. But using it when stuck in a low-rent single room in a social housing block, tortured by noise and flickering lighting overhead, alone, isolated, with no money, no friends and no social life is not all any parent wishes for their child, I'd say. Yet that's the lot of most of the really allegedly mild cases of autism where people can speak.

It ain't often mild, in other words. It's what causes only 15% of us to be in work. It's why 75% struggle to find a single friend. It's why 80% have big problems with bullying. It's why so many are spending a lifetime on anti anxiety and anti depressant medication, why so many are at risk from running away, why so many end up homeless and destitute. The intense loneliness and desperation and inner pain can look really mild if we measure it on things like toilet training and speaking in sentences, yes. But is it?

All big questions. I don't have all the answers. I do know that I have friends and colleagues from all parts of the spectrum - verbal and non-verbal, severe, moderate and mild, with and without other disabilities - and we all agree that we could do with a world that stops causing us pain. And stops forcing parents and teams to make us sound like soulless monsters in order to get a tiny bit of help...A world that starts listening to parents and children and teachers to find out what makes a difference. I want brilliant help and support for any child who is struggling. And brilliant help and support for every parent, carer and teacher who encounters wonderful young people with so much to offer the world...if only that world will give them a chance.

RonaldMcDonald Wed 07-Aug-13 08:34:07

great thread, really really great thread
thank you

SallyBear Wed 07-Aug-13 08:45:42

Powerful stuff Polter. I struggle with DS4s Autism diagnosis as he is also deaf. This also impacts greatly on him. But I knew from when he was really tiny that things were different with him, and I knew it wasn't just his deafness as my DD is also deaf. I struggle to pinpoint the exact cause of his difficulties because he struggles in so many areas, which is I suppose by definition a Spectrum Disorder.

zzzzz Wed 07-Aug-13 09:06:10

My signal is fluctuating but this is what I tried to post earlier. Will go back and read the bits I've missed.

Ooooo that was a can of worms wasn't it?! grin

It is of course infantile to compare disabilities by their "severity". Like children lazily discussing "would you rather be blind or deaf?". The comparison is ridiculous and it trivialises the difficulties of both.

I do find it interesting that as a group there has been no difficulty in seperating the communication aspect of the disability and other issues. That to me points strongly to the idea that these are in fact comorbid conditions, not facets of the same condition. It is difficult of course because there is such a range of severity and presentation in both aspects.

I find the term LD difficult, the meaning is not firm in my mind and so it does complicate things for me. I think my idea now, is that a LD is independent of IQ (with the obvious impact of making IQ hard to measure understood). So for me you could have significant LD and AS.

I do think what is woefully missing is a descriptor of how severe the Autistic element is, and though I don't embrace sallys idea that it is insulting to be treated as mildly autistic if you have AS, I do see that it is inappropriate and must make life more tedious. In the same way that any disability is more of a burden if people underplay your difficulties.

We are at a funny place with ds and dx. Until about two years ago I would have described him as mildly autistic with a severe language disorder. In fact I often still do.

But the reality is more fluid than that.

His language is now (despite the frankly shocking reports from SALT) massively improved, the autistic behaviour and difficulties are much more pronounced. This is partly because he is older and lets face it a lot of (if not all) autistic behaviours are a huge part of the nt preschooler. But partly also because he can communicate more effectively and is more forceful.

So in this transition period as my boy learns to talk with more fluency and the autistic side of his nature comes more to the fore his profile is changeing. It will be interesting to see where he settles. Will he in fact end up as an adult with a moderate language disorder and mild autism, or less severely language disordered but more severely autistic? Will the suggestion that he is has AS and a severe language disorder (thrown around by professionals at 3) prove to be more accurate (though let's face it it's a daft dx) than anything else?

What I find truly irritating is that however weird and off piste ds's and all our children's development is there must be others with the same developmental path. It seems criminal to me that we don't know where we could be going and what helps get there. This is the age of data sifting and sorting. Where we can pull together patterns in ways we have never been able to before. It is pathetic that parents are left flailing around as to what will help, where they are heading. I am of course not suggesting that at two Drs be able to predict your child's future, but "60% of children who present with this profile become functioning adults with x, y, and z intervention at a, b, and c years" is not beyond our capabilities.

blush. Sorry soapbox-itis.

zzzzz Wed 07-Aug-13 09:12:44

I'm a bit freaked out to have posted before reading ambers post. She is very wise (and I you are reading this amber, it is so VERY helpful to read your posts, lots of times they have helped me clarify my own thoughts. thanks ).

ArthurPewty Wed 07-Aug-13 09:25:31

Message withdrawn at poster's request.

MovingForward0719 Wed 07-Aug-13 09:37:34

My son has ASD with learning difficulties. In the early days he presented with speech delay and very challenging behaviours, thoughvtoileted quite young. He is 6 now, has much more speech, eye contact etc but the aurism and LDs are unmistakeable. I am still confused about where ASD ends and LDs begin! He is starting special school in Sept but I have failed to secure 1:1 speech or ongoing OT for him. The conclusion I have come to is to stop worrying about his diagnosis, treat special school as an opportunity for some respite and time I can start to earn again and get out there and pay for additional services myself, based on what I think he needs. My 9 year old asked me what will happen when his brother is an adult yesterday and I didn't have an answer for him :-(

PolterGoose Wed 07-Aug-13 09:43:23

I agree with Sally that it is insulting to consider Aspergers as mild autism.

I'm really not sure that you can separate out the communication aspects, I think communication is absolutely central to ASDs. The presentation may be different, a child may have no speech, delayed speech, disordered speech or superficially advanced speech, but, for me, it is the underlying inability to communicate effectively that is the issue. After all, many people do communicate effectively without spoken language. I think spoken language can both hide and exacerbate the extent of the disability.

TBH I now tell people in real life that ds has autism, because the stereotype of someone with Aspergers is so far from the reality it's ridiculous.

MovingForward0719 Wed 07-Aug-13 10:33:33

I think perception comes into it a bit too. I have two friends, one with a child who is non verbal, just toilet trained at 9 and another with a little lad of 5 with very advanced vocabulary but also obvious traits. Both of them consider that their child is mildly autistic. My son sits somewhere between the two of them and I am confused as hell about where he sits on the spectrum!

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!

seaofyou Thu 08-Aug-13 21:24:37

Eyes! Are you telling me you didn't do C=">*^ in those days on the uni computers shock wink

zzzzz Thu 08-Aug-13 21:48:50

I don't know. Am home now so will read on something bigger than this tinsy phone. Thank you. I am so irritated that I don't know this stuff. How is it possible ds is 8 FFS!

PolterGoose Thu 08-Aug-13 22:02:25

Here's an interesting book chapter on racial bias and testing which raises some interesting stuff about IQ tests, I've only skimmed bits as am on phone but it seems to cite some interesting bits of research and legal stuff (though it is a US source).

seaofyou Thu 08-Aug-13 22:20:19

Oh thank you Polt. Will have a look tomorrow.

zzzz if you read a lot of USA stuff they class dyslexia as learning disability. Is wiki USA based by any chance? Easy to then get confused as one country says one thing and not another and as most stuff comes from USA it is easy to then coin the phrase from all you read from USA.

We in UK still have Aspergers. In USA Aspergers is now gone. So confusing!

It would be easier if they just labelled it all as 'Developmental Disorder/Condition/Difficultiy' as gets confused all these LDs!

ouryve Thu 08-Aug-13 23:06:11

Interestingly, I got the latest "Autism" magazine from the NAS, today (never got around to cancelling my direct debit in time for this year's renewal, even though I'm officially tired of them) and it was discussing the DSM-V changes. ICD-11 is due out in a couple of years and currently there are no plans to drop the Aspergers diagnosis from it. Given that the majority of medics here use ICD-10, that means that Aspergers may still be acknowledged as a separate entity in the UK.

WetAugust Thu 08-Aug-13 23:44:52

I think they should have kept Aspergers as a separate diagnostic condition. It may seem selfish but, to the general public, Aspergers has none of the 'negative' associations of 'autism'.

When I tell people DS has Aspergers their usual response is 'he must be very clever'. He is actually.

And as long as they hold they view that Aspergers are clever but a bit eccentric then DS may have the opportunity of getting a job and having a satisfying life.,

With a diagnosis of just 'autism' it fails to recognise his abilities.

Eyesunderarock Thu 08-Aug-13 23:50:41

Well, DS thinks of himself as Aspie, and describes himself as such. As do his two friends. It does seem to alarm people less for some reason.

<passes familiar bucket to old and dear friend, it has a rather lovely Merlot in it>

WetAugust Thu 08-Aug-13 23:54:55

It alarms people less - frankly - because they see Aspergers as 'capable autism' rather than the 'we'll have to wipe his bum for him' kind.

zzzzz Fri 09-Aug-13 00:19:13

I find that frankly appalling.

Eyesunderarock Fri 09-Aug-13 00:23:11

Yes, but do you think there's truth in it?
That the uninformed have very stereotypical views of the definitions and what they mean? That the general population see Asperger's and Autism as different, with AS as 'less' 'mild' 'weird but not scary'
Appalling, but stereotypes usually are.

zzzzz Fri 09-Aug-13 00:34:09

A bit like pretending to be Greek or Italian rather than Pakistani? Because it might be easier to get a job? Yik.

I'm not sure if the stereotype is actually that clear cut anyway. I would have said in the mid 90s you would have had to explain what AS was to the average person and Autism would have been Rainman, so toilet trained (if that is really so identity defining for you).

amberlight Fri 09-Aug-13 06:38:09

In discussion with various diagnostic professionals, many in the UK have dropped Aspergers. They tend to call it 'Autism spectrum' now. Toilet training was never a part of autism diagnosis. It was a different developmental delay that plenty even with Aspergers can also experience.

Well, DS (9) was diagnosed as "Aspergers Syndrome (Autistic spectrum disorder)" two years ago. I don't think I have ever actually said to anyone he has autism, in fact in day to day life I don't have to tell many people at all. The only time I generally say anything (apart from in discussion with school etc) is if he is signing up for some sort of new childcare or activity, or, as happened recently, he needed hospital treatment after an accident. It seems that most people in childcare/medical fields have a general idea of what Asperger's means and yes it does seem less alarming. Maybe I have fallen for the stereotypes myself, but I think it is a more accurate description for him, I think if I told people he had autism they might think I was mistaken or something because until you get to know him he does a very good impression of being NT.

As an aside, WRT recent hospital visits, he fell and broke his wrist on holiday in May and went to A&E out of area, so I mentioned it to them. When we got home and transferred to the local fracture clinic before I even thought to say anything they immediately told me that they had noted that he had AS and on every visit (6 or 7 in total) the nurse came up to make sure he was OK, made sure he was seen quickly, offered to let us sit in away from the main waiting area in case the noise was distressing him, etc. All very discreet too, no fuss. I was really impressed.

Strongecoffeeismydrug Fri 09-Aug-13 08:07:54

Ds has autism and toilet trained easily at 3 years old!
So he defiantly doesn't need his bum wiping for the rest of his life, but I do agree with people's pre conceived ideas of autism as even his new school automatically presumed he wore nappies after reading the reports about his lack of communication,rigid routines ect.

ArthurPewty Fri 09-Aug-13 09:22:06

Message withdrawn at poster's request.

zzzzz Fri 09-Aug-13 09:30:23

So basically you are using AS to imply mild Autism. shock

FWIW I think my thinking is more in line with the new US criteria, where neither how verbal or how well you bum wipe is part of the criteria.

It never fails to amaze and depress me what extraordinary prejudice there is against individuals who cannot speak or speak badly, and individuals who are not fully continent. Can you not see the people behind these tedious disabilities? I feel really really sad to read some of this.

amberlight Fri 09-Aug-13 10:11:42

I have so many wonderful friends who bring SO much to my life - from every part of the spectrum of autism and other disabilities, and I see them as people and am so proud and honoured to share life with them. I found the best way to counter prejudice was to be really clear that I'm autistic and let people wear themselves out trying to prove how 'awful' I am...then realise that in fact they're just fighting their own fear and insecurity and lack of knowledge. It takes a time, aye, and it would have been very easy to just hide and say I'm not autistic at all...but then if we all did that, no-one gets a world where it's Ok to be us. I don't want that for my son.

ArthurPewty Fri 09-Aug-13 10:25:03

Message withdrawn at poster's request.

zzzzz Fri 09-Aug-13 11:58:17

No not you Arthur, you didn't mention AS.

Me you mean? Maybe I am. Maybe I am using it because that is what the diagnosis was. In most instances where I tell people about it, it really is mild as far as it will affect them. He doesn't have sensory issues to any noticeable extent, his behaviour isn't so rigid that others will notice in the short term, he copes with unexpected events without a meltdown (although he might get a little tearful). On the other hand when I am dealing with professionals that help him, eg school, OT, SALT etc I will make it clear his needs are severe (he has issues with fine motor skills, concentration, inability to read social situations etc). I describe it as best I can to fit the situation. If it had been HFA I would say that. Maybe I should say he is autistic and let him sweep away some of the prejudices, but my main concern to date has been to give people the most accurate impression of what to expect from him.

PolterGoose Fri 09-Aug-13 16:16:48

Agree zzzzz I'm liking the new DSM criteria, especially the inclusion of sensory processing problems. For ds it is like he is under constant attack on his sensory system, so it's no surprise he is so rigid, anxious, angry and prone to meltdowns, how else could he be?

And whilst I can see how the stereotype of Aspergers can be advantageous as posted by Wet and Eyes and I too have had the 'he must be very clever comment', and there's been good press of late about how brilliant people with Aspergers are as employees, for a child with lots of real and current difficulties the stereotype is a million miles away from reality, and means 'people' don't understand the true extent of how hard life can be.

Ineedmorepatience Fri 09-Aug-13 21:08:19

Great thread zzzzz I have just come back from holiday so joined late smile

When Dd3 was assessed I was absolutely convinced she would (if anything) get a dx of Aspergers, she didnt she got Asd which is fine by me but was slightly confusing at the time. The psychiatrist said she wasnt obsessive enough to get a dx of Aspergers, I disagree she should try living with her!

Actually in the end Dd3 decided to use the term autism, she feels comfortable with it and I am happy if she is happy.

I agree that Aspergers is definitely not a mild version of autism, I personally think it is autism with additional twists and turns along the way and at the end of the day every single person with the condition is effected in different ways whatever the name of it.

I have no doubt that the general public and employers see Asperger Syndrome as 'milder' and less scary than autism. I would have no compunction in using that fact to help my DS2 if I could. Sorry if that offends anyone.

My DS2 doesn't actually have an AS DX, though, as he was non verbal until 4. He does have an average to above average IQ, but he cannot 'pass for NT' for more than a few seconds. So I won't be able to use AS with employers.

I would say that his autism, while very obvious, seems less disabling than some of the other DC I know or some of the DC of MNSN posters who have an AS DX. He's not particularly anxious, he's happy not to have friends, he doesn't seem to care about his differences. As a 6 - 13 yo he has been fairly happy to go to MS school.

I have no idea what job he could ever have, though. He's not brilliantly intelligent, he's just average with a less than average work ethic! He's going to be very borderline when it comes to adult services, I guess.

PolterGoose Sat 10-Aug-13 16:28:45

Just came across this quote on Aspies for Freedom website and thought I'd throw it into our discussion:

The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored

zzzzz Sat 10-Aug-13 19:00:14

sad but I have to say I love those freedom fighters. grin

streakybacon Sun 11-Aug-13 08:04:19

That's a great quote. Depressing but true.

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