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Autism or Asperger - does the diagnosis matter?

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In the run up to the diagnosis of our son we were pretty sure he would be given a diagnosis of Aspergers. His language development was above average and he was gifted in reading and maths.

 

However he was given a diagnosis of Autism - from what we can tell from the results of the diagnositic test he was well into the Autism band - i.e. functioning below the level that would qualify as Aspergers. We sat in on the original test and felt that it was in some ways very badly administered. The person giving the test had such poor English (both vocabulary and accent) that I struggled to understand her and that led to several misunderstandings. That will have reduced his score somewhat but probably not enough to change the diagnosis.

 

In a recent assessment with an independent SALT, who is highly recommended, she said that she thought he was Aspergers and furthermore recommended that we should try to get his diagnosis changed. I didn't speak to her directly but she seemed to think that we would be more likely to get the best education for him if he were AS rather than ASD

 

Given that one would hope that any prospective school would look into much more detail when considering a child than just the headline diagnosis would it really make any difference? And if so how should we go about it?

 

In fact as time goes on I feel more and more that Autism is the correct diagnosis - there is a level of impairment in theory of the mind, social interaction and creativity that goes beyond what I would consider typically AS

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in 2013 Aspergers will not even be diagnosed no more.. for than the Diagnostic Manual (DSM V) will be put in effect and they scraped the name..

 

Overall.. Aspergers is usually seen as a mild sort of autism: people with great intelligence, also language-wise but lacking in certain interaction skills and insight.

Perception from the outside world and some Aspie's aswell: Top of the bill.. the cream of the crop!! Hardly any of the problems, but all the benefits..

 

or is it...?!?

 

I hear several fellow adult Aspie's complain that they are usually over-estimated.. due to their language skills!

Which give aditional problems or miscommunications

And usually the intellect has compensated certain lack in skills (for some: on a very unconscious level!!)..

When the stress adds thru the years.. certain fail safe mechanisms might slowly fall away.. and you think you're getting mad.. why do I react like this..

why do I now take his or her words so literally.. I'm very skilled at language and never used to do so!!

(Howcome: for not using your body much.. there is no means to release tension and anxiety.. it slowly builds up..)

 

Problems 'we' encounter.. others encounter too... so you're usually perceived as overly complaining or, also common, you hold it in (not asking help, while you should)

But there is a difference between

* annoying (NT)

* annoying and getting overstimulated over time (AS).

Though no-one understand howcome it affects certain folk (you) more.. not even the Aspie's.. :-(

 

When overstimulated or getting a higher/more (socially) demanding position (like manager.. for you are so skilled.. -at your job: yes.. at managing.. nóó!!-)

the balance is off and all build-in foolproof tactics fall away...

 

In short.. Aspie's problems are less at the surface (think ice berg!) But no less severe!

Edited by butterfly73

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Having Aspergers IS having an ASD. It's just a specific term for one common manefestation of ASD. However as ASD is a spectrum even those with AS or other high functioning may easily tick some boxes for an AS dx and some that point to them being elsewhere on the spectrum (but still ASD). My personal opinion is as long as they acknowledge there is an ASD whether it's AS or not and as long as they acknowledge the specific issues for the person (and in the case of a child, ensure appropriate support especially in school) then in my opinion the name they give the actual point on the spectrum for that person is immaterial.

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As already said, Aspergers is being encompassed under the ASD diagnosis. The only difference there used to be was that a child with Aspergers had to have typical language development up to the age of 3. However many children/adults with Aspergers have alot of difficulty with speech and language and comprehension and inference and often take language literally. They can have quite advanced language in their areas of interest, and yet not know some very common everyday words.

 

As far as education goes, if he has more typical language development, he may learn and cope in a mainstream school with support etc. However IF his speech and language understanding is affected [and sometimes you cannot tell just by listening to the child speak], then they may struggle to learn and make sense of what is being taught. And they may also struggle to complete homework because they don't know what is being asked of them. They may find it hard to identify the salient points, or be unable to manipulate learnt facts and answer a specific question set in essay form.

 

They should really be with a suitable peer group. And that would mean a similar cognitive ability, similar difficulties and similar strengths and similar levels of social communication skills. And that could be mainstream for some children, or special school, or autism unit, or independent school for others.

 

They were not sure how to diagnose my son. But because he had good vocabularly only on his areas of interest, used alot of echolalic speech, did not develop language typically, it was agreed that ASD was a better diagnosis because they all felt he needed input from a speech and language therapist. TBH, it is usually those children diagnosed with Aspergers that tend to get less support because they are often considered more capable than they actually are.

 

All those on the spectrum have a spiky profile. My own son struggles with some very basic stuff, yet can to amazing things using other skills he has.

 

How old is he and how is he doing in school academically and socially?

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In my sons original diagnosis it states he has High Functioning Autism (HFA), presenting as Aspergers. The Aspergers was picked up on and in most of the subsequent reports etc it refers to his having Aspergers.

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This is probably a stupid question so forgive me, but what precisely is the difference between Asperger's syndrome and High functioning autism?

 

What is the medical authories rationale for removing Asperger's as a recognised medical condition?

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This is probably a stupid question so forgive me, but what precisely is the difference between Asperger's syndrome and High functioning autism?

Tony Attwood explains the difference in one minute:

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thomas mg - that is a very good question.

 

Traditionally it used to be said that Autism was characterised by delayed language development, whereas AS show near normal language development during the early years. However as I understand it those early years distinctions to not continue into later life so by the time you get to 18 so the consensus now seems to be that there is no medical distinction between the two except in terms of severity.

 

The problem with the term Autism is that in most people's minds, even professionals with people with comparatively low cognative abilities. And to be honest I think trying to use the single phrase ASD to cover the entire spectrum from mild AS to severe Autism is likely to be counterproductive as it makes the diagnosis almost meaningless as a guide to need or requirement treatments (although that might not be a bad thing).

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Again there are so many factors to consider, and each child is different, and alot can depend on personality as well. Some children have other co-morbid diagnoses making them more complex. And children do change as they grow older.

 

My son was diagnosed ASD due to his severe speech and language difficulties [yet on some parts of speech and language standardised assessments he can score 14 and 15 where the typical result is 8-13; yet on other aspects of the same test he can get just a 1 or 2 where 3 is considered severe difficulties.

 

So for some children their functioning is very spiky depending on factors such as the environment, the language being used, whether it is an area of interest, whether it demands group work etc.

 

When he was diagnosed it was also stated that he had severe problems with sensory processing. This has been a major difficulty for him, where some children have sensory issues to a lesser degree.

 

We also did not think he was Aspergers because he did not have obsessions. Those obsessions began when he was about 9, by that I mean he was very interested in certain things and absorbed information about them, but again due to the language difficulties he did not necessarily talk about them a lot. Some areas of knowledge were completely hidden from us. Also the more 'autistic' side of him meant that he did not connect Pokemon on TV with the fact that there are Pokemon figures. The same for Yugioh, he liked the TV programme, but never understood or connected that you can buy cards of the characters.

 

Now that he has found that out, he is as obsessed as any other child with Aspergers could be. He goes on and one about what he has to do to earn enough money to buy another card/character. It became apparent that he already knew all the character names and their skills and how to combine them [from the TV show], but just had not talked about it.

 

We already knew that he can record TV programmes and films verbatim in his head and repeat them for hours at a time. In school this made them think he was more capable than he was. Because although he could repeat back the information, that is not the same as being able to answer a question about a topic. So the comprehension and inference skills were not always there.

 

So I would not worry too much about the actual name of the diagnosis. I think ASD is probably better to cover all those children because I think that those with autism tended to receive low expectations, whilst those with aspergers received very high expectations that they would continue through school as other children. Some do, but many cannot and struggle.

 

Interestingly, from Tony Attwoods video, it was at the age of 8 that it became very apparent that he was not coping mainstream. He was initially moved to another mainstream school where there were a higher proportion of ASD children, but this was still not enough and he rapidly deteriorated and became very ill.

 

It is also important to know that there is a correlation between the degree of speech and language disorder and having a specific learning difficulty such as dyslexia.

 

Also some children have major problems with executive functions and cannot plan and organise themselves or sequence things.

 

You can also have a child that appears to have reached a plateau, and then suddenly they make major progress overnight.

 

So I also think it is important to remember that learning is a lifelong experience. And the more positive a child feels about learning in general, the more they will learn.

Edited by Sally44

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Personally - I think we will be better off when the Aspergers diagnosis goes. At the moment there a massive confusion about what is autism and what isn't, what's autism and what's Asperger's etc etc. I went to a really interesting talk/discusssion on Monday that a lecturer on autism (Dr Luke Beardon) gave to the Lancashire Autism Partnership Board, and he said that there was only one thing you could definitively say a person with autism could not do - and that was not be autistic.

 

If he had a dx of Aspergers then he would be autistic anyway...

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I have mixed feelings about this. If everything on the autistic spectrum is labelled "Autism" then it actually makes a diagnosis pretty much useless as any form of guide to the needs and xcapabilities of the child (or adult). Using the Asperger label for those with better developed social/communication skills is potentially helpful even if not strictly medically accurate.

 

And to return to the original question - does that make a difference? It seems strange that the SALT appeared to think it mattered to get the diagnosis changed even when anyone who works in the field should know that it is a spurious distinction.

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If everything on the autistic spectrum is labelled "Autism" then it actually makes a diagnosis pretty much useless as any form of guide to the needs and xcapabilities of the child (or adult).

Everyone on the autistic spectrum has such a unique set of skills and deficits that their needs and capabilities need to be assessed on an individual basis anyway. Not only that, our our needs change depending on the stressors in our life - obviously there are some people who will never be high functioning, but some of us with be very capable at some points and very dependent at others.

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Where I work 5 of the residents have an Autism diagnosis. These are 5 very different people. New staff are often surprised by how different.

 

A simple example of this is one will only leave the building with a lot of coxing and support, they need to know where their going how long they will be out and who will be traveling with them etc. Another has to be watched night and day as she will leave the building and go walk abouts at any time. As adults they are free to make their own decisions, but we have to keep them safe.

 

You think that working with autistic people you know all about Autism, then a new resident moves in and you have to learn about it all over again. It will be just the same for teachers and senco's. They will need to learn about your child. It is the professional who thinks they know it all that are the problem, not those that admit they don't. (Think that was a bit off topic)

 

The diagnosis of Autism doesn't just say. "Autism" it gives a (It should do) complete picture of that person.

Some people with Autism will need complete support in ever aspect of there lives, all there lives. Other will lead completely independent lives, contributing greatly to society. And of course, there are the rest of us who, with or without an Autism diagnosis, fit somewhere in between these two points.

Edited by chris54

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i too am totally confused my dd was diagnosed with aspergers 18 months ago at 14 years old and although i know it is part os the spectrum,my ds has now been diagnosed last thursday( he is also 14 at the moment) it was the same paediatrician but she used ASD so im not sure whether they are both diagnosed the same or different?neither of them have learning problems but my ds didnt talk til he was 3 years old but since then he has had no problems so was just a late talker,but do i go back and say is it aspergers or does it realy matter as i too had heard that they were doing away with it?

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It may be the late speech development that has made the difference.

The term Aspergers will stop being used to officially describe one particular form of ASD, I dare say it will continue to be used unofficially.

 

As I say it is the whole diagnostic which is important and not the headline label.

 

If you read my sons diagnosis it is about 12 pages long, Only on the last page or two do the terms Autism and Aspergers, get a mention.

The 12 pages contain the results of the test and reports done over the 12 months that led up to and including the final Clinical Psychologist session with him which lasted best part of 3 hours, which we have (somewhere) on video tape.

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From my perspective as a parent I don't think the label particularly matters. My son is my son he has certain needs are behaviours that remain the same whether he is called AS or Autistic. In our case the psychiatrist used a set of tests and based on the score diagnosed Autism rather than AS - had his symptoms been less severe the DX would have been AS. It used to be said that the delayed language development was the distinction between the two, so that may be what caused the difference.

 

So far no one here seems to think that the diagnosis matters - my instinct in our case is to leave it at Autism unless we find that is restricting our options for education (in other words if there are schools that would take him with an diagnosis of AS but not autism).

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From my position I know that a part of me thinks and behaves in ways which are very autistic in broad terms. The degree of influence of these autistic traits can vary considerably but I am very concious that they are always there. Now in middle age I would not consider myself to be any more or less autistic than at any other part of my life, but the traits manifest themselves in different and subtle ways over time. I put this variation mainly down to two things.

 

The first was that my personality needed time to develop and play an influential role in my life, for me this was more or less a process which was completed by the time I reached 20. Up to that point as a child autistic traits played an ever increasing influence as my life was subjected to more and more environmental pressure as I started in school life and then had to pass through puberty and the physical transformation into an adult. Once my personality had developed I entered into a conflicting period of my life where I had to establish my identity in the world a period with my life decisions often being a conflict of interests in respect to my autistic traits and the need to express my personality.

 

The second influence on my autistic traits has been the process of time, where experiences have passed through my life and through which I have matured as a person. Maturity enables us to take more control of our lives and exert more influence over the areas in which we choose to opperate. I would define this period of development as positive autism for me as I was able to leverage autistic traits to my advantage, but this took a lot of effort and control on my part. I would not say I was less autistic at this time rather I was very manipulative and controling of my autism.

 

I personally now feel I have reached a point in my development process where I have gone full circle and returned to an early child state. I feel I have come to terms with the person I am and see my autistic traits as being in a constructive partnership with my personality. I feel very assured and comfortable in the environments in which I choose to opperate, and as such I know i am on the right pathway of life for me and as such am able to fully express myself. In this respect on the outside I may be more autistic than ever, If I choose to do so I can also opperate in reasonably challenging environments and use complex strategies to manage myself in such scenarios. Deep down I know I am the same animal as I have always been, but that I have simply evolved.

 

To me the diagnosis matters little what is more important is self recognition of a range of traits in my make up which could very deffinately be described as autism. I will carry a label if people want me too, I will drop it if they would rather prefare I didn't, why because it doesn't affect me any more, all that matters is how I relate to myself and not how the world chooses to define me.

 

A lot of the problems surrounding deffinition I believe are a result of looking at too narrow a perspective and having a limited field of view. We look at individuals in relatively short time periods of a few years or so and place limiting definitions such as child into the equation. Personally I feel we need to remove the zoom lense from off the camera and repalce it with a more wide angled optic and look at the broadest picture possible. To cite a phrase I have read autism is a silver thread which runs through the rich tapestry which I call my life to date. That tapestry is still being woven and as such I believe at a personal level I have the right and good fortune to be able to lay down that bright thread into intricate and beautiful patterns which may become the new highlights in my life.

 

In other forum posts I have described the emotions of lying in a light room with a child diagnosed with what might be described as severe autism and have felt real attatchment with her as I felt I had been invited into her world after making eye contact. I felt this was an invite which was unique to me in comparison with the other adults in the room who I am sure following subsequent conversations only felt pity for her, in many ways as I have described before I felt jelousy. Autism is a broad umbrella and one under which I am happy to sit. If people want to deconstruct the condition into smaller parts they can, it does not bother me personally but it is a process which is open to manipulation for self interest.

 

There are some really good comments in this post from a variety of backgrounds and may they continue. If I have anything to really add it would be please take a broader look at the spectrum not just in respect to diagnositic criteria but across a wide time scale and how a diagnosis may potentially ebb and flow through the progression of time. ASD is not something which defines an individual at anypoint in their life, rather it is a set of individual conditions which are greatly influenced as our personality develops, we have life experience, and develop maturity to self reflect on the people we are and how we might use this important insight to take responsibility and mould our own lives. Because of this there is a lot of potential that autism can be a real positive in an individuals life and as such they can in turn exert real positives in to the society in which they live.

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Personally, I see Aspies as the ones with motor skills deficits, and Auties (HFA) as the ones without. That's from the limited set of people on the spectrum who I know personally. More important is the question where the specific problems are (that the school will have to consider).

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