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Aspergers no more!!

(62 Posts)
PipinJo Sat 07-Nov-09 12:14:44

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StarlightMcKenzie Sat 07-Nov-09 12:28:48

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PipinJo Sat 07-Nov-09 12:32:26

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asteroids Sat 07-Nov-09 13:54:15

I already use ASD as an umbrella term for all types of autism including AS. I think it will be easier for people with AS to get necessary support if it is termed ASD. Currently, some people/LAs consider AS to be a mild condition which does not require any special consideration. However, many people with AS have major social difficulties and associated mental health problems.
Although my diagnosis is AS, I have never felt a need to refer to myself as an 'aspie' etc and usually say I have autism or an ASD.

StarlightMcKenzie Sat 07-Nov-09 14:02:47

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PipinJo Sat 07-Nov-09 17:52:03

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linglette Sat 07-Nov-09 17:59:12

Given the amount of precious parental time wasted in the early years attempting to work out the difference between the different terms, perhaps we should abandon the whole bally lot and call it "communication delay" or "communication disorder".

So one child would be "communication delay: differences in sound/sight processing"

Another child might be "communication disorder: difficulty in processing body language and facial expression, differences in sound/sight processing".


StarlightMcKenzie Sat 07-Nov-09 18:36:46

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Marne Sat 07-Nov-09 18:50:52

I agree with Starlight, dd1 had a dx of Aspergers aged 4 years, dd2 was diagnosed with ASD a few months ago at the age of 3, as she is still so young they will not say where on the spectrum she is (although we suspect she has HFA), we were also told if her speech develops before she's 4 they may diagnose her with Aspergers rather than HFA. Other have said that she may have AS and that her speech problem is something not linked to the ASD (speech and language delay). It all confuses me hmm.

Dd1 is at a main stream school and they are aware of her AS but she gets no 1:1 help as she seems to be doing great on her own but i hope that if she needed help she should get it.

Dd2 will be starting main stream next september with full 1:1 support (unless things change in the next 6 months), we have to go back to the diagnosis team in April when hopefully we will get a new dx of either AS of HFA.

The spectrum is so huge but its hard to tell weather splitting the 2 completely will make a difference.

Is AS totally different to ASD, i don't know if it is, my dd's have a lot of similar trate's but they are different children and each asd child is different.

Both of my dd's are sensitive to sound (both hold there ears), both have sleep problems, both like routine and both line up toys.

Dd1 is 2 years ahead with maths and english, dd2 is behind with speech but is great with numbers.

Dd1 is a picky eater, dd2 will eat anything.

Dd1 doesn't like contact with others (apart from me and dh), dd2 will hug anyone.

Dd1 is afraid of lots of things, dd2 is afraid of nothing.

Linglette- i like your idea of calling it 'communication disorder/delay' at least then we wouldn't have to explain to every one what ASD/AS is.

Marne Sat 07-Nov-09 18:52:34

I think people under estimate AS, i find dd1 (AS) a lot more hard work than dd2 (ASD), maybe its because dd1 is so verbal and can argue back (always gets the last word).

daisy5678 Sat 07-Nov-09 21:18:13

See, I've never heard of HFA making any 'not eligible for support' lists. Aspergers, yes, but not HFA. In most places that I have heard of, anything with the word autism in (i.e. high-functioning autism or autism)as a dx is treated the same. In many areas, including mine, ASD is an umbrella term and so is actually treated as less 'severe' than something with the word autism in, iyswim, cos ASD is just seen as saying that someone's on the spectrum, not necessarily meeting all criteria. This is the danger of assuming that all places dx/ react to a dx in the same way: they should, but don't!

Also don't agree with the point re: people with Aspergers having self-awareness and people with autism not. My sister, who has AS, is very self-aware and it has made her very very depressed and suicidal at time. Yet J, who is diagnosed with autism, is exactly the same - he is very very aware of difference and it often makes him miserable and he has expressed the wish to die in the past.

It's too hard to generalise, and we shouldn't if we expect others not to! The real diagnostic definition distinction currently is all about language delay, nothing else.

FWIW, I think that a consistent approach to dxing would be a start before changing the DSM, cos there's no point starting a new one before the professionals can even use the last one properly!

mumslife Sat 07-Nov-09 21:52:10

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StarlightMcKenzie Sat 07-Nov-09 22:04:13

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daisy5678 Sun 08-Nov-09 10:49:38

Self-awareness definitely worse.

mumslife Sun 08-Nov-09 14:14:46

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grumpyoldeeyore Sun 08-Nov-09 17:33:24

I agree they could just be lumped together as social-communication difficulties and then specify the features in each case eg with/without speech delay, with / without processing / sensory problems, with / without learning disabilities, with / without high anxiety, with / without sleep problems, with / without behavioural issues etc.

My DS has the full classic autism triad in spades but has very minimal secondary problems passive, placid etc so in many ways he seems much easier going than many children on here who are described as high functioning. Our paed / psych refused to define where he was on the spectrum (by which they meant IQ) because they can change so much between 2 and 5.

My bug bear is the complete refusal to try and work out DS's individual profile or learning style. I have been told he's a visual learner, because 90% of children with autism are but they haven't bothered to test this out. On the basis of this approach given 99% of children are not autistic then he wouldn't be autistic.

I also get told all children with autism are highly anxious and when I say I don't think DS is, get told I've probably failed to notice my child is "storing up the anxiety"! ie it can't be them who are wrong it has to be me. They trot out the all children with autism are different line but then try and treat them all exactly the same.

I think having to go through sub categories of characteristics would make professionals take a more individualised approach, that giving a general label is not enough.

I'm also not sure how useful the high / low functioning tags are especially as some people consider low functioning to mean low IQ and some to mean non-verbal when you can be non verbal with high IQ etc. I think the new DSV has some suggestion of assessing the triad as mild - moderate - severe and I can see a point in that (you could also apply to other characteristics eg behaviour, sensory etc) as it would help with accessing resources, whilst realising children can change.

This is what I would diagnose my child
1. Social Communication disorder - moderate / moderately severe
(a) Sensory differences (auditory) - mild
(b) Speech delay - moderately severe
(c) Rigidity / lack of imagination - moderate
(d) Social difficulties - moderately severe
(e) Learning disabilities - not yet determined
(f) Anxiety - mild
(g) Sleep problems - mild
(h) Learning style - not determined etc etc

With this approach you could also then add co-morbid conditions eg 2. ADHD 3. Depression 4. Epilepsy etc. It would make it more likely these things were properly assessed if they had to be excluded / rated.

StarlightMcKenzie Sun 08-Nov-09 17:40:12

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daisy5678 Sun 08-Nov-09 18:16:34

Sometimes professionals prefer a 'box' to make life easier. I quite respect J's psych for refusing to categorise him as anything other than autism even when I pressed for a more specific dx. She said it's very subjective and J is so severe in terms of behaviour, social skills and self-care but mild in terms of learning difficulties/ vocabulary that there'd be no point. I guess there's no point doing a one-size-fits-all dx if it's misleading. He doesn't have classic/ low-functioning autism, but HFA is misleading. He's not Aspergers either. So what does he have? Autism. I guess under a mild-moderate-severe label, he'd be moderate. But really, professionals need to recognise the severities and mildness in different aspects rather than seeing a label and assuming they know what he'll find easy and hard.

PerryPlatypus Sun 08-Nov-09 18:56:07

I agree with Marne. I have one ds with HFA and one ds with AS. Sometimes they seem to fit each other's dx better than their own IYSWIM.

My ds with HFA is often complimented on having such good language skills. The one with AS still needs help from the SALT for his language difficulties.

The ds with AS is the one who has good motor skills, while his brother with HFA still has problems with these.

My ds with HFA is now 9 and doesn't need 1:1 help at school. My ds with AS is 6 and I strongly suspect he will be needing a statement sooner rather than later. Academically he's fine but emotionally he's really struggling.

My ds with HFA is far more aware of his autism and what it means.

I think putting AS in with ASD would actually be a good thing.

amberlight Sun 08-Nov-09 19:02:26

What they're saying in essence is that the finest minds can't find a significant difference between "high functioning autism" and Asperger syndrome. I have many friends and acquaintances with HFA, Asperger syndrome etc and often there's no difference whatsoever between the two.

Much research starting to show that supposedly "high functioning" individuals are no such thing, and have some of the worst outcomes in life. The ability to speak is not an indicator of success in life after all. I'm a living example of how the ability to speak is a sure way to hell if you don't know what you're doing with the words and can't ask for help in meaningful and persuasive ways when you need it. It's just so much noise without the social context, and that context is what we can't 'get' properly, ever. Result - often incredibly high stress levels, high anxiety levels, poor health, major addiction or self-harm issues, few friends, broken relationships, meaningless jobs, suicidal thoughts, depression. Some of us found answers to some of this, some of the time. But it takes teamwork and adaptation and resources, as we know. And a lot of help also for those doing the support (as parents, carers, partners, business colleagues etc)

They're hoping to split into low, medium and high functioning autism, and then add in the actual problem areas and co-morbid stuff, so you'll get "high functioning autism, severe sensory difficulties, moderate dyspraxia, moderate language difficulties" or "low functioning autism, moderate epilepsy, severe language difficulties" or "medium functioning autism, no other presenting difficulties" etc. Something meaningful for us, rather than just a label that often means nothing and ends up being very confusing for people. Something that will lead to a holistic package of care rather than just processing one symptom and ignoring everything else.

Most of the autistic individuals I've seen comment on this so far agree that it could be a good step, if properly done.

PeachyInCarnivalFeathers Sun 08-Nov-09 19:34:35

It's very much at the discussion stage Pipin though, and the aldyt on the NICE comittee I met wasn't convinved by it.

I can see both sides; certainly there is a 'severe aspergers' that some kids have, and that gets glossed over becuase of the seemingly low idea of what support as kids need held onto by some people. DS1 is typical of that mroe severe I guess, looking for a palce in a specialist AS unit right now.

But then again ds3 is technically HFA (there's a lot of his intelligence though that is rendered useless by absences and sensory iddues) and he really is severe; there's no way he will function without lifelong care.

So I personally am undecided. I think it might harm some peoplewith AS; it's amazing hw hard a blow a dx of any kind effects your self esteem, it's only recently I have realised (via Uni) just how AS I really am and it has done enormous damage to me psychologically. I wouldn't like the idea that people with AS might find themselves facing a new label that portrays them as mopreseverely affected:Uni has amde me aware of the fact that the bits about me I dont like are actually almost all Aspie traits and things I will have to live with, rather than change or fate, and if someone vulnerable who is getting by under the AS - is- just- a - personality - type type of idea then finds themselveas faced with HFA instead- well the lady at the NAS was telling me there are people she sees she can't even tell them who she is from they are so in denial,so.......

Then again, ds1 is in many ways an exceptionally demanding child, far mroe than his label would suggest, yet we are without support due to the AS label.......

very difficult, I have no answers just a whole load of thoughts.

PeachyInCarnivalFeathers Sun 08-Nov-09 19:35:29

AMber- is that the real Amber?????

Shells Sun 08-Nov-09 23:00:26

Its such a muddly area isn't it. My DS is recently diagnosed AS (at 5) and I would rather he was under the ASD banner (like you Starlight).

He hasn't been denied help at school, but there is a sense, both from teachers and people in general that AS is 'just a personality type' and not really that serious.

I've had several people say to me 'oh its fashionable these days isn't it'. Grrrr. I think AS is one of those labels that laypeople feel confident making ridiculous proclamations about, whereas I think 'autistic spectrum' somehow holds that amateur nonsense at bay.

PipinJo Sun 08-Nov-09 23:56:38

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linglette Mon 09-Nov-09 09:20:52

"when autism and AS was described in the 40's...autism was described close to schizophrenia and AS was close to personality disorder, both totally different types of disorders!"

Every mother on this board who spends her precious time analysing these acronyms ought to be made aware of this.

I don't quite understand how we gave the medical professional authority over this area anyway. My child has no medical condition, and the so-called "therapies" he has benefitted from are, essentially, variations on parenting techniques and teaching techniques.

I frankly consider my paediatrician to be less qualified than my nursery manager to judge my child.

Yet most fathers and grannies who feel as I do get told they are in denial.

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