Quick question

[MumTee]

Hi all,

 

just a quickie question, or maybe two....

 

We have our initial dx of autism but when and how does anyone decide where on the spectrum he is? (he's nearly 3 at the moment and nonverbal so difficult to test)

 

and also,

 

is it ALWAYS the case with aspergers that the child talks at the normal developmental stage (I guess what I'm asking is, does my sons lack of speech mean he is automatically in the autism part of the spectrum)?

 

thanks in advance for your viewpoints

[melly]

I have read that the main difference between AS and ASD is the speech delay present with ASD, but I don't think its quite that simple.

 

As for where on the spectrum, we've not been told that either (had an initial diag when small boy was 2, followed by the real thing now he is 3). However, thro more reading (!) apparently children can move up and down the spectrum unitl they are about 6 when things become more settled. Once they are that bit older you can start to look forward with some idea of the future.

 

It is a bit frustrating sometimes (ie trying to look for schools etc where their criteria state mid - high functioning), but I guess at the end of the day it doesn't really make a difference as children at the same end of the spectrum can vary so greatly n e way.

 

Hope this helps a bit.... we'll wait for the big guns to come in with the real answer in a mo!!!

[justamom]

When we had a consulation once the Family Liason Office told us in a conversation that Keegan had mild aspergers, but it does not state that on his dx papers it just says a dx consistent with Aspergers so we were never told where on the spectrum he was, not even on his paper work.

 

justamom

[Flora]

mumtee. I think in many cases there is confusion because the clinical picture of each child can change over time. My eldest son has dx of AS. My youngest son has dx ASD and language disorder. The youngest one was none verbal until he was nearly 5, and so at that age he was much more severe in comparison with my AS son at the same age (who had early language development). Now they are 12 and 9 respectively, and I'd say without a doubt that my AS son is much more obviously autistic than my youngest, though this is certainly not reflected in their dx. Though that being said, the only really glaring difference between them now is their academic ability; my AS son does ok'ish, but the youngest has moderate learning difficulties.

 

I don't think this really answers your question, I'm wondering if you are really asking the question that most of us have asked and still ask; What is the prognosis of my child's condition? The answer to that lies in the future for all of us.

 

I hope this helps in some way.

 

<'> Lauren

[Bullet]

I don't think it's always the case, because there is this woman on another forum I go on who's lad has been diagnosed with Aspergers and one of the things she mentioned about him was that he was very late to start talking and had to go to a speech therapist when he was three.

Edited February 19, 2006 by Bullet

[LizK]

We have our initial dx of autism but when and how does anyone decide where on the spectrum he is? (he's nearly 3 at the moment and nonverbal so difficult to test)

 

and also,

 

is it ALWAYS the case with aspergers that the child talks at the normal developmental stage (I guess what I'm asking is, does my sons lack of speech mean he is automatically in the autism part of the spectrum)?

 

It's complicated and I'm not sure I fully understand it .

 

The difference between AS and ASD is that children with ASD early language development is normal. However they still have difficulties with language (it's part of the triad) but it might be to do with processing of language or taking things too literally. However I think their early vocabularly and speech development untilt eh age of three is supposed to be normal. Children with ASD have delayed speech development as well as the other associated language difficulties. Also children with AS are supposed to have normal or above average intelligence too whereas children with ASD can have a wide range of IQs high or low.

 

However some children with ASD and speech delay do catch up and have normal speech. Some ASD specialists (Tony Attwood is one I think) are then happy to recategorise a child as having AS if they have a normal IQ and their initial speech delay catches up and becomes age appropriate.

 

That's my understanding anyway thoguh I've seen lots of different interpretations. Clear as mud, eh ?

 

Lx

[phasmid]

Long story so I'll condense it:

 

Phas jr dx'd as Autistic at 3, (they just didn't tell us - Label not helpful!) at 4 started nursery with very poor speech and language development, age 5 1/2 speech took off and he caught up rapidly with his peers, age 10 nearly 11 was dx'd with AS.

 

So it is perfectly possible to get a dx of AS at a young age with poor speech but for speech to develop to normal levels later.

 

HTH

[JenRose]

phasmid they dx,d but didnt tell you?

 

Thats terrible.

 

We were told by M,s clinical psychologist last year that she thought he was AS, she referred him for specialist treatment for help with his anxiety and obsessions.

 

We havent had an official letter saying AS but we have had a report of the cognitive assessment where they say that there is a high probability of AS, i have never asked them if that means a dx.

 

However, CAMHS psychiastrist disagrees as she thinks M has imagination and ASD kids dont have that

[Tylers-mum]

My son had echoalia speech when he first started talking at 2yrs of age and had delayed speech, comprehension, understanding etc etc. He caught up with the help of his 1:1 and a speech therapist and is now up to date with his peers. He was dx HFA b/c of the speech delay. Had he not had the speech delay, he would have had a dx of AS. His doc whom dx him told me this herself and it is also written in his dx report.

Edited February 19, 2006 by Tylers-mum

[TuX]

I have read that the main difference between AS and ASD is the speech delay present with ASD, but I don't think its quite that simple.

Aspergers Syndrome is an ASD/Autism Spectrum Disorder,do you mean in comparisson with Kanners syndrome/classic Autism?

 

If a lot of the kids diagnosed with Kanners Autism today- have no speech difficulty as they get into adult hood,the diagnosis can change to Aspergers' Autism-i'm not sure whether every specialist will do that,but it is getting more common.

[oracle]

If a lot of the kids diagnosed with Kanners Autism today- have no speech difficulty as they get into adult hood,the diagnosis can change to Aspergers' Autism-i'm not sure whether every specialist will do that,but it is getting more common.

 

Yes it is common that the dx is changed but I simply can not understand how they can do this and it worries me that they do. I seriously think that this is a cost effective decision because AS has now been so down graded that adults with AS are not considered to be high priority for service provision. It's happening with the children now too

 

In my opinion (but then who am I?) if a child has had a speech delay then it will always have had that speech delay. You simply can not put the clock back and re-diagnose. Of course people can and do raise through the spectrum but my understanding has always been that you can only really have a dx of AS if there was no speech delay and there either was or there was not.

 

I have one son with AS - no speech delay - one with High Functioning Autism - and a definite speech delay. There is no doubt that he has moved up through the spectrum but I will fight them if they try to change his dx. If the goal posts have been moved then they should change the criteria so we are all fully aware of that fact. Until then I will stick with HFA although like Lauren my AS son is certainly the most autistic of the two at the moment.

 

Carole

[jayjay]

Our son was diagnosed with PDD-NOS - Autistic Spectrum Disorder and the paed said the reason for this and not Aspergers is because of speech delay (very mild speech delay now) he is also under a speech therapist

jayne xx

[Zemanski]

There is a lot of confusion about the autistic spectrum, not least because of the way it is used by the NAS. Lorna Wing herself is wary of the impact of the idea of a spectrum, and she was the one who coined the term in the first place.

 

autism is a developmental disorder which is categorised as one of the disorders under the heading PDD, pervasive developmental delay.

 

so before we start all our children are PDD

 

autism is the most well known PDD

 

the confusion arises because within autism there are subcategories one of which is kanners autism which is referred to as simply autism or classic autism (this is incorrect terminology and is the root of the confusion - if your child has a diagnosis of autism it is generally kanners autism). Another category is AS. If a clinician is unsure where a child fits then PDD-NOS or atypical autism may be diagnosed.

 

Kanners autism and AS are not different disorders, they are both autism. There is no research that has found any difference at all and increasing evidence that children with Kanner's autism may progress from being profoundly affected in their early years to indistinguishable from AS/HFA people in adult life

 

one is not milder than the other, simply the presentation is different so that the effect of autism on a person's life is more obvious, and often more profound, with Kanners autism than with AS.

The way I see it is that Kanners autism is more on the surface where AS is largely hidden.

Also people with Kanners autism seem to have more comorbids to cope with like bowel problems and sensory differences which makes their disability still more debilitating.

 

The only diagnostic difference between kanners autism and AS is language delay and officially there is no reason to change the diagnosis, if speech delay was present in the early years, even if it is no longer present, then it is diagnostically significant and should, while the diagnostic criteria remain unchanged, determine the diagnosis.

Language can and does catch up for some children, often in quite spectacular bursts where a non-verbal child will suddenly begin speaking in full coherent sentences but this is not technically diagnostically significant.

 

However, as Carole so rightly points out there is a lot of pressure to avoid a diagnosis of kanners autism where possible because there is a misguided belief that AS is mild and requires less support and fewer resources.

 

People like Tony Attwood who believe that a person can progress from kanners autism to AS and even to 'residual AS' have encouraged clinicians to change diagnoses and they have done this for very good reasons; first it emphasises that the conditions are all autism with different presentations, secondly it allows progress to be marked and celebrated - it is an esteem-boosting thing for a person to be told they have made so much progress that they no longer fit the 'bottom' of the spectrum but are climbing their way to the 'top'. The problem which I think Attwood didn't recognise when he began to promote this is the way it would be used to undermine a person's right to appropriate resources, just as Lorna Wing failed to realise that the idea of a spectrum could be corrupted to make people think of people being placed at the top or bottom (a spectrum doesn't, in fact, have a top or bottom).

 

It is a mess that needs sorting out.

 

Interestingly, Com is the only child who I know of who has been recategorised in the other direction - last year, because of the level of regression he experienced due to stress in school he lost much of his previous development including language to the point that all documents from that period state 'autistic' rather than 'AS'. Theoretically this is possible but I have never heard of it happening before and even for Com it is not an official rediagnosis.

 

Zemanski

[Lynden]

We were just given a diagnosis of autism but in our opinion and from what we've read Logan is fairly low functioning. He has no speech at all and never has had, and he's also developmentally delayed by 12 months or so. He has limited understanding and limited non-verbal communication too as well as various sensory issues.

 

Lynne x

Edited February 20, 2006 by LLaverty

[Lynden]

Just managed to quote myself as opposed to edit post above so ignore this one please!

Edited February 20, 2006 by LLaverty

[Jill]

Zemanski,

 

Thankyou for your post, I found it immensely interesting!

 

 

 

The confusion for us is that the paed told us that The Boy was mid spectrum autistic when he was diagnosed last Sept, but I have since seen the dx written down as "infantile autism" which I have assumed to mean "we know he's autistic, but he is too young to properly assess yet" (he's only 4 & was assessed with a language ability of a 15 month old child).

[oracle]

I knew that I could rely on Zemanski to say what I meant And written in a manner which is very easy to understand And thanks because I was beginning to think that I had dreamt it all up about the AS diagnostic criteria.

 

It does worry me that they are changing the goal post and the only reason I can find for this is money It really does need sorting out as does parents being told that their child has autism. Without sounding heartless I don't think that it does parents any favours to be told that their child has 'mild' autism. I have been told that it is often done this way to soften the blow and allow the parents to come to terms with the diagnosis. But you can not tell a parent that it's child has 'mild' Downs Syndrome, although I know that there are indeed many variants of that condition. However because it is visible you have to give a dx of Downs straight off.

 

I will shut up now before I do manage to offend people.

 

Carole

[Zemanski]

That is a diagnosis of autism, as in kanners autism, because of speech delay - it doesn't mean your child is less intelligent or even that he will be more severely affected than others, or anything like that, it is simply the presentation, every child with autism is different.

 

The 'infantile' bit refers to the fact that it was obvious in his early development as opposed to 'regressive' autism which seems to appear suddenly with little or no warning around 18 months to 2 years in apparently normally developing children.

 

Zemanski

[DaisyProudfoot]

OK, forgive me if I sound stupid because I'm no good at this official autism advice but my son seems to vary on the spectrum from day to day.

 

Sometimes I consider he's "mild" if that's the word we wish to use (yuk) and other days he's, like, inches from being 100% autistic (if that makes sense). It all depends on the kind of day he's having, how tired he is etc.

 

He is "regressive" because he didn't seem to start being autistic until he was about 2 and a half years old. He was slow in his milestones, his twin sister reached all hers first.

 

When he was diagnosed we were told he's about "there" on the spectrum - it was sort of in the middle towards the more coherent end. If that makes any sense

[phasmid]

It does worry me that they are changing the goal post and the only reason I can find for this is money It really does need sorting out as does parents being told that their child has autism.

 

 

I think you have a point or two there Carole - speaking as the parent of a dx'd child who was not given the dx at the time it was made I have to question their real motives for that now. At the time I/we were more than happy to be told there was "...nothing 'really' wrong with your child." well, who wouldn't prefer to hear that? Fast forward 8 yrs to the day we were given an AS dx for him it was a "we knew there was something..." moment.

 

The diagnostic process's don't seem to help us much either. Why is it an agreed method to use cannot be found and put into place around the whole country? There seems to be as many different means of identifying and dx-ing ASDs as there are craters on the moon.

[Flora]

Phasmid, something very similar happened to us when my boys went for dx. They were both seen by the same psychiatrist at around the same time. William's dx was first, AS and dyspraxia. When Luke was dx'd he had to have more assessments than William so it took a little longer. However, they gave him the dx of Semantic Pragmatic language disorder, autistic tendencies and specific learning difficulties; add it all together and you get???? Autism. At the time I was genuinely relieved that it was 'autistic tendencies' and not autism. However, after requesting his full records last year, there was a letter to my GP which I had overlooked at the time; it specified, 'Luke has an obvious PDD, which exceeds the criteria for Autism; however, in light of this famiy's previous diagnosis of another child who has Aspergers Syndrome, I do not think it will be helpful for this label to be applied at this time. To this end... blah blah blah, the rest is history'. Now don't get me wrong, I think this particular psychiatrist genuinely had our best interests at heart, but looking back, just who does he think he was helping? Me or Luke? Maybe it would have been a lot to take in at the time, with the two dx's coming back to back, but I would have coped. And frankly, anything would have been better than the ensuing years of frustration and confusion we've had to deal with as a result. He now has dx of ASD and dyslexia, which is far more helpful and much less confusing.

 

Lauren

[justamom]

Zemanski and Carole you do put things in such a manner its easier for me to grasp!!! I am going to print this out because its what most of my family need to hear....

 

Many thanks for sharing your knowledge

justamom

[MumTee]

Thanks everyone - I nominate Zemanski and Carole for plain english awards! - I've read books and books and not made sense of a bit of it, and yet you have helped enormously in just a few paragraphs!

Thank you!

[elun1]

Hi Haven't posted in ages. ds2 (aged 4) is severely autistic and differs greatly in many ways from a high functioning asd child yet funnily enough the triad is present in all children, wherever they are on the spectrum. I sometimes think that although life can be very very hard with ds, people look at him and they know immediately that he has huge problems e.g. he rocks and jumps on the spot all the time and hums/screams/sings. People are usually very good. I've always thought that it must be terribly hard when the disability is more 'invisible'. I don't think ds has moved about at all on spectrum since diagnosis 2 yrs ago but I remember early on that I used to constantly hope that he would.

Elun