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

this.

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!

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