autism is not a visible disability

[sesley]

like a person who is blind,but has a white stick or a person who can't walk is in a wheelchair.Where i am going with this,is on Come dine with Me last night a girl named Sarah,is a designer,good looking and full on outward going. I am wondering watching people sometimes if they might be on the spectrum,by the things they do.This girl,was very loud and very good at demonstrating with toys and mimicking animals. Her social interaction skill was on the in your face scale. My person can be like that,he isn't bothered at how people react to his actions,he can't judge by body language or scarcasm from voice tone.Instead of being judegmental of how people act,i think is it possible that they too are on the Autism spectrum in someway,I know i have the same traits as my son,for example i can not look directly in someone else's eyes when i speak to them i focus on somewhere near thier eyes to look like that they have engaged with me,and my social interaction skills can be a challenge too,though i am have never been diagnosed and that autistic characteristics are in us all.

[baddad]

Hi Sesley -

Gotta say I'm not sure where you're going with this one either! I agree with you in one sense that autism isn't a 'visible' disability, but I think in recent years that has been taken out of context more and more. Things like epilepsy or tourettes are also invisible disabilities in that looked at casually there are no physical clues of disability, but if you happen to be standing next to someone when they have a seizure (or start swearing/shouting/vocalising inappropriately) it very quickly becomes apparent that they have a significantly disabling condition - that 'significant' being an important part of the diagnostic criteria for autism. Anyone spending more than a few minutes with (i.e.) my own son will become aware that he's not quite like other kids. His mannerism's, speech patterns, restlessness, topics of conversation and the way in which he converses are all cues that would indicate there was something significantly 'different' about how he was engaging and interacting with the world. People wouldn't necessarily arrive at the conclusion he was autistic, any more than the casual viewer would necessarily recognise tourettes or epilepsy, but they would certainly see 'difference'. [That said, in these days of casual diagnosis and given autisms high profile everyone seems to think they recognise autism when they see it, and it gets projected onto all sorts of behaviours that would more naturally fit under the 'human' spectrum rather than 'autistic' spectrum umbrella!].

I think this kind of thing already has a significant impact on how autistic people are viewed, and that can only get worse (as happened with ADHD/Dyslexia) the more 'casual' diagnosis becomes. Already, any sort of social reticence or shyness, any sort of bullheadedness or inconsideration for others, any sort of social awkwardness is becoming labelled as autistic (or, more commonly 'AS') - often by the very people enacting the behaviours (who obviously have enough social understanding to realise what they're doing!) and often as a justification or excuse for them...

In a nutshell, and IMO; no, someone seeming over-confident,outgoing and 'in yer face' would not be a likely candidate for an autistic spectrum disorder, especially if that confidence stretched as far as inviting several complete strangers and a camera crew into their home so they could cook them a meal. I think in the 'right' circumstances, with close friends and probably a good bottle of 'self medication' or two (red wine, for example), that some autistic people could cook an absolutely delicious meal and be a perfect dinner party host, but I think doing so casually on prime time TV with people unknown to them would, by and large, be 'improbable'.

Yeah gods - I've just thought... If in yer face and outgoing are indicators of autism then Brian Blessed must be well into the spectrum! And Giles Brandbreth! Ainsley Harriot! Oh dear, oh dear....

 

L&P

 

BD

[justine1]

I watched the programme this evening and think she most definatley does not have ASD,I could be wrong,but even the others thought her "in your face" attitude was all an act.Many pople have behaved in the same way on programmes such as big brother,its called acting(badly at that!!!)

[sesley]

you are probably right, being out going and loud is no real indication of who what.I am just randomlly thinking and putting my thoughts into cyberspace.

[baddad]

you are probably right, being out going and loud is no real indication of who what.I am just randomlly thinking and putting my thoughts into cyberspace.

 

Don't get me wrong, I'm not saying autistic people couldn't/can't be loud and in yer face. Again, my son, for example, can definitely be L & IYF! It's more a case of how and when, iyswim!

 

L&P

 

BD

[macgumerait]

like a person who is blind,but has a white stick or a person who can't walk is in a wheelchair.Where i am going with this,is on Come dine with Me last night a girl named Sarah,is a designer,good looking and full on outward going. I am wondering watching people sometimes if they might be on the spectrum,by the things they do.This girl,was very loud and very good at demonstrating with toys and mimicking animals. Her social interaction skill was on the in your face scale. My person can be like that,he isn't bothered at how people react to his actions,he can't judge by body language or scarcasm from voice tone.Instead of being judegmental of how people act,i think is it possible that they too are on the Autism spectrum in someway,I know i have the same traits as my son,for example i can not look directly in someone else's eyes when i speak to them i focus on somewhere near thier eyes to look like that they have engaged with me,and my social interaction skills can be a challenge too,though i am have never been diagnosed and that autistic characteristics are in us all.

 

Two points I want to make here:-

 

1. I think its very dangerous trying to secondguess someone's potential for having autism via body language. For example, this behaviour could just be something rational in their mindsets...and just being very extrovert by nature. Autism doesnt always necessarily have physical symptoms. For example, I have highfunctioning AS, so my symptoms may seem 'mild' to people who dont know me. Whereas I know other autistic people whose symptoms are far more graphic, whether a speech impedement, no eye contact, specific patterns, argumentative, etc.

2. If you suspect that you yourself could have autism of some kind, have you considered an assessment? If so, then you may be able to access any assistance to build coping strategies for this.

[baddad]

Two points I want to make here:-

 

1. I think its very dangerous trying to secondguess someone's potential for having autism via body language. For example, this behaviour could just be something rational in their mindsets...and just being very extrovert by nature. Autism doesnt always necessarily have physical symptoms. For example, I have highfunctioning AS, so my symptoms may seem 'mild' to people who dont know me. Whereas I know other autistic people whose symptoms are far more graphic, whether a speech impedement, no eye contact, specific patterns, argumentative, etc.

2. If you suspect that you yourself could have autism of some kind, have you considered an assessment? If so, then you may be able to access any assistance to build coping strategies for this.

 

Hi Macgumerait -

Hope you don't mind me asking, but I'm very confused about this relatively new terminology of 'High Functioning Aspergers' so I wonder if you could explain it?

It seems to be cropping up more and more, but given that Aspergers by definiton is a diagnosis that is applied to people of average or above average intelligence - including the speculative Einstein types - it doesn't really make much sense on that level. The only other interpretation is that the 'high functioning' applies to the level of disability: is a measure of how 'disabling' the traits or features are to the individual, but again that doesn't make much sense, because it would seem impossible to differentiate between someone of average or above average intelligence with 'mild' autistic features and someone who was of average or above average intelligence who just had some 'traits', which are a perfectly normal and natural part of the 'human' (as opposed to autistic) condition.

Please appreciate, I'm not questioning your diagnosis - just trying to understand it, because 'HFAS' is a very new concept that's only popped up in the past few years, and does seem to relate directly to some of the concerns I voiced in my original post. Another factor that really worries me is that as a 'catch all' term it seems to get applied to all sorts of problems (for want of a better term)and behaviours - fastidiousness, social anxiety, general anxiety, self esteem issues etc - that have historically not been seen as 'disabilities' but as personality traits and/or mental health issues and/or responses to socio-environmental factors like upbringing and life experience. Again, not directed at you so please don't take it personally, but I genuinely believe these days that pretty much anyone could get a diagnosis of Aspergers - especially 'HF' Aspergers - just on the basis that they are human beings with all the flaws, fears, paranoias, inconsistencies and individual character traits that implies. And that being the case, where does that leave 'autism' as a diagnosis of anything, and how, with an umbrella that big, do we target resources and services to meet the needs of those most in need?

 

Hope that makes sense.

 

L&P

 

BD

[macgumerait]

First of all, lets dispel the myth that "High Functioning" is based on intelligence....it is not. "High Functioning" is more about the severity of the symptoms that sufferers inhibit.

 

On intelligence, I dont have a particularly high IQ, and certainly do not regard myself as intellectually superior to the neurotypicals in any way, shape or form. In fact, if anything, I feel a bit "wooden".

 

Ive seen both ends of the spectrum, throughout my dealings with groups and individuals. The way I see things, the strain which ties us all together is the lack of understanding and ability to comprehend unwritten rules of social engagement. That lack of "social sense" can create irrational anxiety, as we are unable to learn in this arena, and are somewhat affected.

 

Even though my own personal diagnosis was highfunctioning AS, I certainly dont think that lessens the impact that AS has had one me, in one format or another. Im 30 years old, and certainly stand out from people of a similar age group. Due to a complete lack of social and life experience, Im very naive, but also very isolated, suffering from both paranoia and depression. As I get older, and with the inability to adapt sufficiently, the forecast for my later years is not good at all. Unlike other people that may lay claim that AS should actually be embraced, my strain has no benefits to it in any way.

 

Also, it only took half an hour from an expert, running many tests, to conclude that I indeed have AS.

[baddad]

First of all, lets dispel the myth that "High Functioning" is based on intelligence....it is not. "High Functioning" is more about the severity of the symptoms that sufferers inhibit.

 

On intelligence, I dont have a particularly high IQ, and certainly do not regard myself as intellectually superior to the neurotypicals in any way, shape or form. In fact, if anything, I feel a bit "wooden".

 

Ive seen both ends of the spectrum, throughout my dealings with groups and individuals. The way I see things, the strain which ties us all together is the lack of understanding and ability to comprehend unwritten rules of social engagement. That lack of "social sense" can create irrational anxiety, as we are unable to learn in this arena, and are somewhat affected.

 

Even though my own personal diagnosis was highfunctioning AS, I certainly dont think that lessens the impact that AS has had one me, in one format or another. Im 30 years old, and certainly stand out from people of a similar age group. Due to a complete lack of social and life experience, Im very naive, but also very isolated, suffering from both paranoia and depression. As I get older, and with the inability to adapt sufficiently, the forecast for my later years is not good at all. Unlike other people that may lay claim that AS should actually be embraced, my strain has no benefits to it in any way.

 

Also, it only took half an hour from an expert, running many tests, to conclude that I indeed have AS.

 

Hi again - no, I wasn't accommodating the idea (be it myth or not) that 'high functioning' applied to intelligence - I was just confused about what it does apply to in relation to Aspergers, because it doesn't seem to apply in either case - i.e. to intelligence or 'social awareness/understanding'. In autism, the term is sort of an 'either / or' but generally is applied to social awarenesss/functioning or the two things in combination. The question I'm asking is what it actually means in the context of the (quite recently)emerging 'High Functioning Aspergers', because obviously the intellectual development part of the equation doesn't apply (made redundant by the 'Aspergers' rather than 'Autism' diagnosis) and if it only applies to the social awareness/understanding side of the equation that seems something of a moot point too. What would be the difference, for example, between a person with 'HF' Aspergers and someone who was just socially inept, or shy, or fastidious, or any of the other 'personality' traits I mentioned in the other post? Or, perhaps more relevant, what is the difference between someone with 'Aspergers' and someone with 'HF Aspergers' once native intelligence is taken out of the equation.

You've mentioned in your post that you also suffer from depression and paranoia - but wouldn't these two psychological factors also lead to social isolation and confusion and reticence and misunderstanding? In which case, how do you (or rather your psychologist) distinguish between the effects and imperatives of paranoia and depression and those of 'HF' Aspergers? What makes your problems those of someone with HF Aspergers syndrome and not those of someone with depression and paranoia?

Please understand I'm not questioning or 'challenging' the dx given to you by your expert or the tests he/she conducted to reach his/her conclusions. I'm just asking what are the indications of 'High Functioning', and how would you distinguish them from completely natural elements of personal psychology that would give rise to the same kinds of difficulties for NT people, or from the alternative brain pathology of non 'HF' (or maybe the term 'classic' is coming into use, as it does to distinguish the kind of autism Kanner described as opposed to all/any of the new variants that seem distinct from the twin 'autism' and 'HFA' models that used to apply?) AS people?

 

Hope that makes sense

 

L&P

 

BD

[macgumerait]

The traits that spawn from a "high functioning" asperger may appear common to other conditions, but with one specific exception.

 

Take a condition like Social Anxiety....traits from this are mutually shared with some on the autistic spectrum. However, the difference which seperates them is in terms of development and coping. It is commonly referred that social anxiety can be controlled, learned, and in some cases, even corrected. Someone with an autistic disorder has no chance of that kind of treatment, because the brain is physically wired differently from the other classes (this may also suggest the link between learning difficulties which can be associated as a trait with a sufferer).

 

High functioning is defined by the level in which the symptoms are present. As said before, you have people with autism who are very withdrawn, struggle with speech, and require care fulltime....the "low functioning"....then you have me (no im not boosting an ego here), where my traits are slightly milder - even in some cases where these traits can be looked over by the other qualities I have.

[baddad]

The traits that spawn from a "high functioning" asperger may appear common to other conditions, but with one specific exception.

 

Take a condition like Social Anxiety....traits from this are mutually shared with some on the autistic spectrum. However, the difference which seperates them is in terms of development and coping. It is commonly referred that social anxiety can be controlled, learned, and in some cases, even corrected. Someone with an autistic disorder has no chance of that kind of treatment, because the brain is physically wired differently from the other classes (this may also suggest the link between learning difficulties which can be associated as a trait with a sufferer).

 

High functioning is defined by the level in which the symptoms are present. As said before, you have people with autism who are very withdrawn, struggle with speech, and require care fulltime....the "low functioning"....then you have me (no im not boosting an ego here), where my traits are slightly milder - even in some cases where these traits can be looked over by the other qualities I have.

 

Sorry Macgumerait, but I disagree with that entirely (if I'm understanding you correctly?). You seem to be saying either

a - that people with ASD/AS (whether high functioning/whatever) are unable to develop coping skills to help overcome or compensate for their social difficulties - as opposed to those who just have social anxiety who can develop coping skills or

b - that people with AS can develop coping skills while people with autism can't, because their brains are 'wired differently' (whereas people with AS aren't differently 'wired?')?

Dunno, I may have completely misunderstood your post, but if that is what you're suggesting I'm pretty sure you are wrong. My own son, for example, has autism - no beating about the bush, no messing with 'HF' or anything like that (though I am fortunate that he is academically bright) - he is autistic. He's 13, but already has developed many coping skills and strategies that help him to interact more effectively, or that enable him to 'conceal' some aspects of his autistic behaviour that could compromise his wider interactions. This is not 'normalisation' or anything like that, he is quite open, straightforward and honest about his autism but is aware that he can communicate more effectively through (hopefully mutual, but he's willing to try and take up the slack if not)compromise... He's certainly not incapable of 'adapting' or developing coping strategies as you seem to suggest. To your second suggestion I can only say that to my knowledge it is generally accepted that autism and AS are variations on the same theme, and that they share, pathologically, the same root.

Of course it may well be that 'HF Aspergers' is something completely different again to autism or 'non HF' Aspergers, and that it doesn't share a common root. That, in a nutshell, was what I was originally asking - because I really am struggling to understand the 'High Functioning' addendum to a diagnosis that is already accepted as a 'High Functioning' example of the original (autism) diagnosis. Add to that the growing concept that we are 'all somewhere on the spectrum' (an opinion regularly expressed by 'experts', hem hem) and it leaves us with the rather messy situation I outlined earlier - using that criteria, it is possible to diagnose everyone and anyone!

Again, please accept that I'm not 'challenging' your diagnosis (or anyone elses) in any way - I am merely highlighting (and trying to understand)the ever-expanding terminology and definitions of autism that seem increasingly inappropriate as definitions of my own son and the vast majority of autistic people I know (or rather 'knew, because of course the balance has shifted in the past half decade or so).

Anyhoo - I'm going to bow out of this one now because I seem to be somewhat hogging the thread. If anyone does have a defintion of 'HF' Asperger's, though, and an explanation of how it differs from 'Aspergers' or, for that matter, 'NT with below average social skills/confidence' I'd really appreciate being thrown a line!

 

L&P

 

BD

[Tally]

I have never heard of the diagnosis high-functioning Asperger's. It makes me think of someone who has only mild difficulties and doesn't really need any support. Which then makes me wonder if the person really has any need of a diagnosis anyway.

 

The term "high-functioning" has never been said to me, but I am certainly considered to have a mild case of Asperger's, because I am able to hold down a job and live alone. But put me in a social situation and I feel very low-functioning indeed! I know of people with Asperger's who cannot work, yet manage far, far better than me socially. Some of them even have actual friends who they can see regularly. The high-functioning/mild label is certainly one that has not afforded me the support I need.

[macgumerait]

Do you suffer from autism yourself? Have you had any form of diagnosis?

 

It appears like you have misunderstood what I was saying. From the two differing options, I was most closely relating to choice A.

 

I dont talk from reading books or watching documentaries....I speak from my own personal scenario. I underwent counselling for 3 years, trying to fix what was only known as social anxiety at that point. The constant therapy, and countless exercises never took the edge of my anxiety at all, no matter how many times they were praticed. My CPN had said that someone with only a social anxiety disorder would have been able to develop and cope with the strategies highlighted during the therapy, and they were puzzled why these would not stick with me. It was on this basis whereby the exercises were rendered noneffective that I was then sent for my assessment for AS.

 

The assessor couldnt be any more adamant that I had the condition, via many tests, including facial expression recognition, scenario describing, etc.

 

Ive been on courses, volunteering in aspergers/autism groups, and know firsthand individuals from all over the spectrum.

 

The one difference that has emerged over the last 5 years is the focus on youngsters being diagnosed. You refer to your son, being diagnosed at a reasonably early age, so intervention was made as soon as detected. With his mind still developing, its plausible that youngsters diagnosed and treated may debunk the standard definition, and have some form of susceptibility towards coping and development strategies in social situations, should that be his preference.

 

You may disagree with my assessment, but you did ask for a common definition between HF and "standard" aspergers (although standard is a mildly used term). Blankly disagreeing with the hypothesis is nothing more than contradictionary.

[Tally]

I underwent counselling for 3 years, trying to fix what was only known as social anxiety at that point. The constant therapy, and countless exercises never took the edge of my anxiety at all, no matter how many times they were praticed. My CPN had said that someone with only a social anxiety disorder would have been able to develop and cope with the strategies highlighted during the therapy, and they were puzzled why these would not stick with me. It was on this basis whereby the exercises were rendered noneffective that I was then sent for my assessment for AS.

But you said that only low-functioning autistic people would not benefit from this type of treatment, whereas a person with Asperger's would. Except you. Your argument contradicts itself.

[macgumerait]

But you said that only low-functioning autistic people would not benefit from this type of treatment, whereas a person with Asperger's would. Except you. Your argument contradicts itself.

 

Where did I highlight that only lowfunctioning autistic people would not benefit from some preventative treatment?

 

Sorry, but it seems you have also misunderstood what Im saying.

[SimonC]

Autistics has, according to research, some physical anomalies which can be seen if one know about them. Also (which I don't have found any clear research on yet) it seems to be something with the eyes of autistics.

[baddad]

Hi again - I know I said I would bow out, but i just wanted to pick up on one point that seems totally 'wrong' in your above post, which is the suggestion that (i.e.) my son developed coping strategies purely and simply because of early diagnosis and recognition and that someone diagnosed 'late' probably wouldn't be able to develop / learn such strategies.

 

If you look around the boards you'll find many, many posts from members diagnosed as adults who developed such strategies without any sort of intervention or diagnosis or guidance purely by working them out for themselves. Many people writing their own experiences of growing up undiagnosed also state this - including Donna Williams in 'nobody nowhere' which was the first widely available autobiography of an autistic person, written almost 20 years ago - and it's also mentioned in books by the 'guru's' of autism like Tony Attwood and Borat-Baron-Cohen... I'm really sorry, but to hear your experience of a professional advisor apparantly not being aware of this is, quite frankly, disturbing (I say disturbing where I'd really like to be able to say 'disturbing and surprising' but as you've probably gathered from my other posts, I'm not particularly surprised by that kind of thing at all), because it represents a fundamental misunderstanding regarding autism on the 'front line' as it were, and it's exactly the kind of thing that made me ask about the 'HFAS' diagnosis in the first place. TBH, it sounds like an excuse that many professionals offer when their 'strategies' don't work for the patient - that it's not flawed strategies, but some additional complication with the client. It's exactly the kind of excuse offered to parents who invest thousands in ABA (or any other type of intervention/cure)- if the 'cure' don't work it's because the parents aren't doing it properly, or the child is being wilfully uncooperative. Some people will find that reassuring, in a 'well we've done everything we possibly can' sort of way, but others will be incredibly damaged by a 'double whammy' which effectively blames them for the lack of results. In either scenario it's ultimately disabling, because it negates /removes any sort of expectation for change. It's as damaging in its own way as parents / people thinking they're ticking all the right boxes (talking the talk) intervention-wise but actually not delivering (walking the walk) at all.

 

One other very quick point: I know of many situations where 'NT' people with mental health/psychological/psychiatric issues have not been able to overcome those issues despite years of long term therapy, medication, intensive interventions etc. They were not able to develop 'coping strategies', or to effectively use those offered to them by their therapists. By the reasoning of your CPN that must imply that they had autism or some other condition 'getting in the way' - and it totally overlooks all of the historical evidence regarding the effects and implications of long-term mental/psychiatric/psychological illness. A manic depressive, for example, doesn't suffer repeated bouts of depression because they are autistic or because of any other 'additional' factor, they suffer repeated bouts of depression because that is precisely the nature of the condition from which they suffer.

 

L&P

 

BD

[matzoball]

As someone recently(ish) diagnosed - my psychologist nearly diagnosed me as HFA, however being that I more or less hit my childhood 'milestones' while displaying autistic tendencies she made the diagnosis of Aspergers.

 

HFA has delayed development, Aspergers has regular development which suddenly deteriorates at a certain age.

 

The social interaction skills, processing of information etc is more or less the same - it is how a persona develops as a child that makes the difference of diagnosis. Hope that answers your question badddadd.

 

It took nearly a year of referrals, 3 solid months of diagnostic interviews which weren't easy considering I had to open up about behaviours I had learned to keep to myself, and hearing pretty disturbing things about how I acted when I was a child.

 

What is disturbing is also that this professional mentioned in an earlier post by macgumerait, took only half an hour to make a decision regarding a dx. For an adult diagnosis this is nowhere near the time needed to make an informed decision about something that is potentially so life changing.

[Lynden]

I've never heard of high functioning aspergers either and, like Baddad, was always of the impression that aspergers itself was considered the 'milder' or 'higher functioning' end of the autistic spectrum. I also thought that the only difference between high functioning autism, and aspergers was that in terms of language development, where people with HFA had delayed language skills as a child where people with aspergers did not?

 

Lynne

[Karen A]

Hi.

I am also very confused by the idea that there could be a category within AS that is high functioning.

Ben is 12 and has AS.

He is extremely bright.He has also had three years of psychotherapy and support from other professionals.

He has made remarkable progress and has certainly learned strategies to manage his anxiety which enable him to manage pretty well in a mainstream secondary school.

 

However he still has AS.

The issue is absolutely obvious to me today.

Ben has returned to school on a completely different site at short notice due to overrunning building work.

The stress of the change of routine without preparation is obvious despite his best efforts to cope.

Ben has certainly learned to manage some aspects of having AS however that is in no way the same as him having less AS which is what ''high functioning AS'' suggests to me.

I should add that Ben did not have any early intervention because he was only picked up as having SEN at age seven.

 

Karen.

Edited September 9, 2010 by Karen A

[Karen A]

The traits that spawn from a "high functioning" asperger may appear common to other conditions, but with one specific exception.

 

Take a condition like Social Anxiety....traits from this are mutually shared with some on the autistic spectrum. However, the difference which seperates them is in terms of development and coping. It is commonly referred that social anxiety can be controlled, learned, and in some cases, even corrected. Someone with an autistic disorder has no chance of that kind of treatment, because the brain is physically wired differently from the other classes (this may also suggest the link between learning difficulties which can be associated as a trait with a sufferer).

 

 

 

The latest research does show that some anxiety disorders have a genetic component in a very similar way to ASD.

Certainly research has demonstrated that trauma does effect the actual physical makeup of the brain.

What is more some research has demonstrated that it is possible to change the make up or wiring of the brain where an individual has long term therapy.

 

 

I dont talk from reading books or watching documentaries....I speak from my own personal scenario. I underwent counselling for 3 years, trying to fix what was only known as social anxiety at that point. The constant therapy, and countless exercises never took the edge of my anxiety at all, no matter how many times they were praticed. My CPN had said that someone with only a social anxiety disorder would have been able to develop and cope with the strategies highlighted during the therapy, and they were puzzled why these would not stick with me. It was on this basis whereby the exercises were rendered noneffective that I was then sent for my assessment for AS.

 

 

However not all individuals who start therapy make progress for a multitude of reasons.

The most common being that the person does not follow the programme or commit to it,the person does not get along with the therapist,the therapist is not very good , the therapy is not apropriate ,the therapist or client can no longer continue the work for various reasons or family or the client have some unkown or known motivation not to put the therapy work into practice.

 

I am sure that there are some cases where the individual continues to have difficulties becuause they have AS.This was the case with Ben.However it is one of the less common reasons for therapy not being effective.

 

In any case there is in practice very little difference betwen the type of talking therapy recommended for Social Anxiety Disorder and the type of talking therapy recommended for people with AS who have Social anxiety related to having AS.CBT is advocted as the most appropriate form of talking therapy for both.

Karen.

Karen.

Edited September 9, 2010 by Karen A

[baddad]

As someone recently(ish) diagnosed - my psychologist nearly diagnosed me as HFA, however being that I more or less hit my childhood 'milestones' while displaying autistic tendencies she made the diagnosis of Aspergers.

 

HFA has delayed development, Aspergers has regular development which suddenly deteriorates at a certain age.

 

The social interaction skills, processing of information etc is more or less the same - it is how a persona develops as a child that makes the difference of diagnosis. Hope that answers your question badddadd.

 

It took nearly a year of referrals, 3 solid months of diagnostic interviews which weren't easy considering I had to open up about behaviours I had learned to keep to myself, and hearing pretty disturbing things about how I acted when I was a child.

 

What is disturbing is also that this professional mentioned in an earlier post by macgumerait, took only half an hour to make a decision regarding a dx. For an adult diagnosis this is nowhere near the time needed to make an informed decision about something that is potentially so life changing.

 

Hi Matzoball -

no, I knew all of that. Generally the key developmental difference is in the acquisition of speech rather than a 'global' delay, but in real terms the difference - more often than not - seems to be one of personal preference for the diagnostician! Some seem more inclined to give an 'AS' diagnosis while others use 'Autism', some prefer 'HFA' to 'AS', and then there are the real fence-sitters who use terms like PDD or 'autistic traits' or 'autistic tendencies'. I think with adults being newly diagnosed the tendency is towards AS, firstly because it offers, in terms of functioning, an explanation for late recognition because the characteristics are 'milder', and secondly because quite often any speech delay that might have existed (particularly if it was only a slight delay) might be forgotten or overlooked. These are further examples of how in recent years (and IMO I should add!) the whole process of diagnosis seems to have become incredibly 'woolly'.

In a nutshell, though, the term 'AS' would apply to someone of average or above average intelligence with no known delay in the acquisition of speech whose (for want of a better word) symptoms were less severe/problematic than those of someone with a diagnosis of autism. The key difference between someone with Aspergers and HFA, other than the speech delay, is in the area of cognitive development and personal skills:

 

There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood. (DSM IV)

 

The point I'm making - and the question I'm asking - is what differentiates someone with 'High Functioning' Aspergers from someone with the common or garden variety of Aspergers. And if Aspergers is effectively a 'stripped down' autism diagnosis that doesn't include any other factor than the social ineteraction aspect - which is already anticipated as being 'milder' - then what is the difference between someone with HFAS and a neurotypical person who's just a bit inept socially?

There was a joke on 'shooting stars' the other night where Angelos Epithemou said he was 'in the top ten percent' at school, and when asked 'top ten percent of what' answered 'the top ten percent of the bottom ten percent'. That's exactly the problem I have with understanding the term 'HFAS' - what distinguishes the most able (High Functioning) Aspergers individual from the least able NT individual? And at what point does that become a 'moot' point? And if we expand that from a ten percent leeway to, say, twenty or thirty percent, at what point would/should that become inappropriate and not a 'moot' point? We're already in a position where many SS disability teams do not recognise Aspergers (the standard variety) as a disability. In that context, what on earth can 'High Functioning Aspergers' mean in real terms, and what can it represent other than a dangerous precedent for the wider autistic community?

DSM V, it's proposed, will not 'recognise' Aspergers as a distict diagnosis exclusive from autism - instead the umbrella term 'autism' will be used with an additional label of 'severe, moderate or mild'. This is being strongly opposed by the guru's mentioned above (Borat etc) and other lobby groups, and I oppose it too - though I suspect for different reasons. For me, the reality seem likely to be the disenfranchisment of those with autism classified as 'moderate' or 'mild' - which will, effectively, cover all people with Aspergers too -rather than a move offering any sort of empowerment or benefit for them.

 

Again, please understand I am not 'challenging' anyone personally, or their diangosis, or overlooking the very real social barriers that might exist for them. What I am concerned about is the wider picture, and the way that woolly definitions and ever widening diagnostic models are going to impact on that wider picture when considering the reality of dwindling resources, and tighter eligibility criterias governing those resources.

 

L&P

 

BD

 

Oh - quick afterthought, going back to DSM IV -

the final point, after the one quoted above, is:

 

Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

 

I don't know exactly what 'Pervasive developmental disorder' means, but I am concerned that alternative psychologigal/psychiatric/sociological and pathological causes for behaviours seem increasingly to be overlooked. 'AS' does seem to be becoming (IMO) a catch-all diagnosis, and one that is increasingly casually applied. Considering that some high profile therapists will now offer family or marital counselling on the basis of a 'home' diagnosis it does make me wonder where this will all end up, and what the consequences will be for someone like my son

[Karen A]

First of all, lets dispel the myth that "High Functioning" is based on intelligence....it is not. "High Functioning" is more about the severity of the symptoms that sufferers inhibit.

 

On intelligence, I dont have a particularly high IQ, and certainly do not regard myself as intellectually superior to the neurotypicals in any way, shape or form. In fact, if anything, I feel a bit "wooden".

 

Ive seen both ends of the spectrum, throughout my dealings with groups and individuals. The way I see things, the strain which ties us all together is the lack of understanding and ability to comprehend unwritten rules of social engagement. That lack of "social sense" can create irrational anxiety, as we are unable to learn in this arena, and are somewhat affected.

 

Even though my own personal diagnosis was highfunctioning AS, I certainly dont think that lessens the impact that AS has had one me, in one format or another. Im 30 years old, and certainly stand out from people of a similar age group. Due to a complete lack of social and life experience, Im very naive, but also very isolated, suffering from both paranoia and depression. As I get older, and with the inability to adapt sufficiently, the forecast for my later years is not good at all. Unlike other people that may lay claim that AS should actually be embraced, my strain has no benefits to it in any way.

 

Also, it only took half an hour from an expert, running many tests, to conclude that I indeed have AS.

 

I find the fact that an expert took only half an hour to diagnose you with AS a bit shocking.

It took four CAMHS psychiatrists,two CAMHS psychotherapists,a Specialist SALT and numerous other professionals three years to diagnose Ben.In that time two of the professionals saw Ben weekly.One of the professionals still does not agree with the diagnosis.

 

Diagnosis should follow a full and detailed medical and social history and an in depth recording and analysis of all previous and current difficulties.

 

I used to be a district nurse.

A basic assessment and documentation for on a one off visit such as a minor injury dressing would have taken me more than half an hour.

[justine1]

I have to say getting a diagnosis in 30min doesnt seem very convincing,sorry to say.Even more so for an adult on the higher end of the spectrum as many of the "symptoms" could be suppressed.A child is slightly easier to diagnose but even then in my boys' case it took 3hours,two separate appts to get a diagnoses. In fact Sam has a diagnoses of ASD but the Aspergers part is questionable as although he has advanced speech he is struggling with almost everything in day to day life.We will learn exactly where he is on the spectrum on the 28th September a year after his initial assessment.

[baddad]

Hi again -

Ow! just trying to offer some balance again...

Maqgumerait: because people are finding the speed of your diagnosis alarming doesn't necessarily mean that the pshych concerned got it 'wrong' - it is entirely possible to arrive at the 'right' conclusions for the 'wrong' reasons, and it is equally possible that you could be Aspergers and still have additional co-morbids. I would be concerned, though, by both the speed aspect and by the other things I've highlighted like the 'HF' addendum, which seems baffling to most people here, and the explanation offered to you for why you haven't 'responded to treatment' with your counselling sessions etc...

 

As I've said, I'm not directly challenging you, or any other individual, and certainly would not want you (or any other individual) to be put off investigating the whys and wherefores of any problem they may face in life. Ultimately, the 'label' we apply is largely irrelevent - it is how we respond to the challenge that matters, and to be effective that has to be an holistic assessment that looks beyond the terminology of labels.

 

L&P

 

BD

[Karen A]

Hi macgumerait.

I thought I would say my concerns are more to do with the care you have recieved rather than whether you have AS.

I do not know if the 30 minute assessment was the only appointment.

If you were offered follow up then that would be a different situation.

However if you just had one thirty minute assessment I think it would be tough from a therapeutic point of view regardless of anything else.

I would have thought that an assessment should include an opportunity to discuss the diagnosis,implications and possible strategies that might be useful to help with any difficulties experienced.

 

I remember when my husband and myself were informed that Ben had AS we just about managed to get home and have a cup of tea it was so significant.

I could not imagine having one half hour appointment,being given a diagnosis and being offered no follow up.

 

The latest information on good practice in assessment and diagnosis for children and teenagers advocates that whether an individual is diagnosed as having AS or not a follow up appointment should be offered some time after the original assessments to discuss the outcome and appropriate support that could be offered.

Karen

Karen.

[justine1]

Hi macgumerait.

I thought I would say my concerns are more to do with the care you have recieved rather than whether you have AS.

I do not know if the 30 minute assessment was the only appointment.

If you were offered follow up then that would be a different situation.

However if you just had one thirty minute assessment I think it would be tough from a therapeutic point of view regardless of anything else.

I would have thought that an assessment should include an opportunity to discuss the diagnosis,implications and possible strategies that might be useful to help with any difficulties experienced.

 

I remember when my husband and myself were informed that Ben had AS we just about managed to get home and have a cup of tea it was so significant.

I could not imagine having one half hour appointment,being given a diagnosis and being offered no follow up.

 

The latest information on good practice in assessment and diagnosis for children and teenagers advocates that whether an individual is diagnosed as having AS or not a follow up appointment should be offered some time after the original assessments to discuss the outcome and appropriate support that could be offered.

Karen

Karen.

Summed up what I was trying to say

[Mumble]

I know the answer according to someone who def knows what he's talking about. I've asked previously because I've been dx'ed both HFA and AS, the reason being that the most appropriate dx for me is HFA as I had speech issues as a child (despite talking early - the words I used just didn't make sense / were made up / were unclear), but more people (supposedly) understand AS so it was thought more helpful for me (I'm not so sure it's more helpful, anyway...).

 

1. There is no such diagnosis as High Functioning Asperger's. Neither the diagnosis or any such condition exist.

 

2. There is a diagnosis of High Functioning Autism. 'High Functioning' in this sense does apply directly to a conception of intelligence, based entirely on a standardised test score. The cut-off is 70, i.e. 2 standard deviations below the mean. This is considered 'average' intelligence. Therefore if an individual is diagnosed with an ASD and has an IQ of 70 or above, they have HFA, if below 70, they have Autism, LFA, Autism with x,y,z named learning difficulties. Functioning, in this sense is not to do with social or daily task functioning.

 

3. If an individual has a diagnosis of Autism and an IQ over 70 and no history of speech delay, the diagnosis is AS (Asperger's Syndrome)

 

4. If an individual has a diagnosis of Autism and an IQ over 70 and a history of speech delay, the diagnosis is HFA (High Functioning Autism)

 

5. Things will be a lot easier with the proposed DSM V move towards a single diagnosis of ASD, provided (in my opinion) that the needs of those on the spectrum are not watered down by the too hasty inclusion of the outer edge.

 

 

And now for real personal opinion based entirely on my own thoughts - if an individual has a dx of Autism yet insists on saying things are mild, not that affected, not like others, able, moderate, don't struggle with, mild high functioning... why have they got or bothered with a dx at all? Part of the dx criteria is that the difficulties have a substantial effect on all areas of daily functioning, but if someone is insisting they don't, then are they not talking themselves out of their diagnosis? (prepares to be shot-down - well I've been missing it! )

[Mumble]

Someone with an autistic disorder has no chance of that kind of treatment, because the brain is physically wired differently from the other classes

Not true. Research has suggested that CBT can work well for social anxiety if adapted for people on the spectrum and that behavioural responses can change. I certainly know from personal experience that, with a lot of hard work, I have been able to benefit from this approach.

[Paula2]

I know the answer according to someone who def knows what he's talking about. I've asked previously because I've been dx'ed both HFA and AS, the reason being that the most appropriate dx for me is HFA as I had speech issues as a child (despite talking early - the words I used just didn't make sense / were made up / were unclear), but more people (supposedly) understand AS so it was thought more helpful for me (I'm not so sure it's more helpful, anyway...).

 

1. There is no such diagnosis as High Functioning Asperger's. Neither the diagnosis or any such condition exist.

 

2. There is a diagnosis of High Functioning Autism. 'High Functioning' in this sense does apply directly to a conception of intelligence, based entirely on a standardised test score. The cut-off is 70, i.e. 2 standard deviations below the mean. This is considered 'average' intelligence. Therefore if an individual is diagnosed with an ASD and has an IQ of 70 or above, they have HFA, if below 70, they have Autism, LFA, Autism with x,y,z named learning difficulties. Functioning, in this sense is not to do with social or daily task functioning.

 

3. If an individual has a diagnosis of Autism and an IQ over 70 and no history of speech delay, the diagnosis is AS (Asperger's Syndrome)

 

4. If an individual has a diagnosis of Autism and an IQ over 70 and a history of speech delay, the diagnosis is HFA (High Functioning Autism)

 

5. Things will be a lot easier with the proposed DSM V move towards a single diagnosis of ASD, provided (in my opinion) that the needs of those on the spectrum are not watered down by the too hasty inclusion of the outer edge.

 

 

And now for real personal opinion based entirely on my own thoughts - if an individual has a dx of Autism yet insists on saying things are mild, not that affected, not like others, able, moderate, don't struggle with, mild high functioning... why have they got or bothered with a dx at all? Part of the dx criteria is that the difficulties have a substantial effect on all areas of daily functioning, but if someone is insisting they don't, then are they not talking themselves out of their diagnosis? (prepares to be shot-down - well I've been missing it! )

 

 

Hi

Please can you help me get this clear in my mind. My 18yr son has just been dx. We were told it was High Functioning Austim also known as Aspergers. We understood that they are the same but now I'm cunfused. [We are still waiting for the specialist letter so we have it in black and white.] My son had delayed speech which was dx when he was 4yr as oral dyspraxia. Now if HFA is to do with delayed speech then my son would more likely have HFA and not Aspergers. Have I got this right.

[Mumble]

Please can you help me get this clear in my mind. My 18yr son has just been dx. We were told it was High Functioning Autism also known as Aspergers. We understood that they are the same but now I'm confused. [We are still waiting for the specialist letter so we have it in black and white.] My son had delayed speech which was dx when he was 4yr as oral dyspraxia. Now if HFA is to do with delayed speech then my son would more likely have HFA and not Aspergers. Have I got this right.

Hi, this is pretty similar to my own dx as an adult. Basically, in adults, HFA and AS present identically as the only difference is speech delay which by adulthood has been 'caught-up' if that makes sense. If he had significantly (I'm not sure how they define significant, but I would assume a dx or oral dyspraxia would indicate significance) speech delay his dx now would correctly be HFA even if now there is no speech delay. If he presented identically but had no history of speech delay his dx would be AS.

 

However, despite whatever is correct, you may find diagnosticians more likely to give a dx of AS for many reasons; supposedly more people understand it, people can (supposedly) understand a verbal adult to have AS but don't believe them to have HFA, because AS is more understood () it should give easy access to services, etc, etc. Given your son's history it would probably be up to him which he uses and he may change it to fit the circumstances.

 

I would say that in my experience HFA is actually more 'useful' because AS is applied by people without dx and seems to weaken it to an explanation of difficulties to an 'oh everyone does that' argument. HFA makes it very clear that it is an ASD. But then of course I get people who look at me and say "but you don't look/seem Autistic" which they don't use if you say you have AS. I guess it's about finding something you're comfortable with. You could always just use ASD and avoid having to make any distinction!

[Tally]

I think that people who meet the criteria for Asperger's are occasionally offered a diagnosis of HFA instead. Given the option, I do think that HFA is likely to be a more useful diagnosis when seeking support, because it is often regarded as more severe than Asperger's.

 

I don't know if the general public actually do have a better understanding of Asperger's than autism, although there are probably stereotypes about autism (eg. Rainman) that would confuse people who came into contact with an autistic person who presented as Asperger.

 

Depending on the situation, I describe myself as interchangeably Asperger and autistic.

[Karen A]

I think that people who meet the criteria for Asperger's are occasionally offered a diagnosis of HFA instead. Given the option, I do think that HFA is likely to be a more useful diagnosis when seeking support, because it is often regarded as more severe than Asperger's.

 

I don't know if the general public actually do have a better understanding of Asperger's than autism, although there are probably stereotypes about autism (eg. Rainman) that would confuse people who came into contact with an autistic person who presented as Asperger.

 

Depending on the situation, I describe myself as interchangeably Asperger and autistic.

 

Hi.

I also describe Ben as having autism or Asperger's Syndrome depending on how much understanding I think other people may have.

I used to always try AS first but after many blank looks which were slightly less blank when I then mentioned autism I decided sometimes there is no need to try AS first.

Karen.

[BusyLizzie100]

Autism is autism. Asperger syndrome, High Functioning Autism, Kanner syndrome, etc etc are all subgroups on the autistic continuum. Asperger syndrome DOES have its own diagnostic criteria, but it's still autism and revolves around the triad of impairments.

 

DS2 was diagnosed as having an Autistic Spectrum Disorder at the age of 4 in 2004. Not knowing a great deal about autism at the time, we asked was it actually Asperger syndrome, to which the doctor replied: 'Autism is autism'. Now I know more about autism, he quite clearly does not have AS. He did have speech delay and probably has an above average IQ, but the diagnosis ASD still stands.

 

DS1 was diagnosed as having Asperger syndrome at the age of 7 in 2005. He fits that description much more accurately than DS2 ever did. At a paediatric review in 2009 the paediatrician described DS1 as having ASD. She explained they tend not to differentiate and prefer to use the term ASD.

 

This same paediatrician recently diagnosed DS3 as having ASD at the age of 7 this year; he is clearly high functioning and in actual fact much like his eldest brother. The term Asperger syndrome is a likely description, but for diagnostic purposes the team has stuck with ASD.

 

I think that's fair. The spectrum is large and we have met many children who present very differently, some much more severely, but each person I've met presents in a very individual way - and personality often affects presentation, too. Nonetheless, all three of my children are autistic.

 

It's hard enough for much of the general public to understand what autism is and additional terms such as AS and HFA can just prove to be confusing - in my experience that can be true of teachers and health professionals, too.

 

I suppose it depends WHY people are keen to make distinctions. I'm genuinely interested - what purpose does it serve?

 

Lizzie x

Edited September 12, 2010 by BusyLizzie100

[Karen A]

Autism is autism. Asperger syndrome, High Functioning Autism, Kanner syndrome, etc etc are all subgroups on the autistic continuum. Asperger syndrome DOES have its own diagnostic criteria, but it's still autism and revolves around the triad of impairments.

 

 

 

Lizzie x

 

It only currently has its own diagnostic criteria.

In 2013 this debate may well be outdated if latest recommendations are followed.

 

Karen.

Edited September 12, 2010 by Karen A

[Karen A]

It only currently has its own diagnostic criteria.

In 2013 this debate may well be outdated if latest recommendations are followed.

 

In any case even now diagnosis comes down to individual professional opinion on the use of termonology.

One psychiatrists ASD is anothers AS.

Karen.

[baddad]

 

I suppose it depends WHY people are keen to make distinctions. I'm genuinely interested - what purpose does it serve?

 

Lizzie x

 

Hi Lizzie - I think it can serve different purposes for different people, so there's no universal answer.

I think many parents (and some adults)prefer the term 'AS' because it has 'geeky' assocoations with high intelligence but poor social skills - 'Geek Chic'. It disassociates them from the often far more negative associations of 'learning disabled', or even 'disability' itself. These kinds of associations may be why some parents choose mainstream schools rather than 'special' schools (or visa versa) too.

In recent years I think the term AS has, in the wider context, come to mean something completely different to autism - almost aspirational ( I use the term 'aspilebrity' for people who self diagnose or get a private diagnosis and immediately think it means they have something to offer the rest of the autistic community through the lecture circuit or via a book - in real terms, about as arrogant and misguided as someone thinking they can write a book on human psychology purely and simply because they are human), little more than 'a bit zany or wacky but ever so EVER so clever and creative, if only i could find an outlet for it...'

Having said that, I think it's gone too far now to reclassify autism under one umbrella - as suggested for DSM-V - because if that 'geek chic' perception ends up as a widely accepted defintion for the general non learning disabled autistic community it's going to severely compromise their lives and their access to services. Already, AS is viewed by many LA SS teams as a 'non-disability disability,' to the detriment of those with genuine needs rather than as a cop out for the occassional faux pas or as an excuse for outright rudeness.

 

Partly because of the above, and for various other reasons some people prefer the terms autism or HFA (and personally I think it is very necessary to distinguish between the two because, unlike 'AS' the differences between individuals can be vast). I think, at the moment, as far as services and access go HFA has many benefits over AS, and for those less concerned about wider society's negative judgements and disability associations that could be a key reason for choosing one terminology over the other.

 

Personally, I'd like to see 'AS' return to what it used to mean - someone with real, disabling autism-related problems rather than social ineptitude or reticence, or depression or non-specific mental health issues - and for that term to be used alongside of 'Autism and 'HF Autism' to represent a spectrum of need.

 

Sorry if that offends anyone with an 'AS diagnosis - I'm certainly not making any individual judgements here and none should be taken. I am though (and it's something i've voiced many times before) very, very concerned at the way the diagnosis of AS has been and continues to be eroded to the point of being almost meaningless. I think that social trend is harming many, many individuals with very real needs and problems.

 

L&P

 

BD

[baddad]

Oh just wanted to add to the above...

 

I don't think autism or apsergers are in any way barriers to achieving great things, which might have been how the above came across with the focus on 'need'.

 

I agree absolutely that if you look at the lives of many many famous historical people there are lots of indicators that some at least were on the spectrum. the difference I'm highlighting, though, is that they weren't diiagnosed and achieved stuff anyway - their 'disabilities' were not the reasons for 'can't do' or non-achievement, and they didn't try to define themselves by their diagnosis. They just got on with it...

 

L&P

 

BD