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LizK

If not high functioning/low functioning...?

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I tend to use the term high functioning autism to describe Adam's ASD. I've read several times on here about people not liking the terms high or low functioning used to describe the degree or sort of autism they or their child has. I can understand the reasoning why, that is can be inaccurate or presumed one fixed level of functioning or just that is doesn't sound nice but what would be an alternative if anything? How do you describe the degrees of autism? Dividing it into Kanners autism or Aspergers misses out the fact it is a spectrum and neither Kanners nor Aspergers is appropriate for my son who is somewhere else! Used to say my son has 'mild' ASD but is any form of autism mild? At the support group I go to the mums of the lower fucntioning kids do describe their kids as severely autistic though. At Earlybird they talked about being children being further along the spectrum rather than higher or lower.

 

Is a distinction even necessary, do our kids just have ASD? I think it probably is as Adam's needs are very different to those of a non-verbal or child with low functioning autism (and now I've typed low I don't really like it :blink: !) This was very evident at Earlybird where the problems and needs of the children varied widely depending upon their degree of autism and we found it useful to have some sort of way of describing our kids autism

 

Hope this makes sense, had a few :wine: and what sounded good in my head seems more gobbledygook on paper :lol:

 

Liz x

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Well I've not touched a drop and it makes sense to me.

 

When I first came on here I referred to severe autism and was rebuked because of the inference that HFA is mild. I hestitate to use the term low functioning because that implies low intelligence. My son may score a big fat zero on an IQ test but that a limitation of the test, not because he has low intelligence. After a bit of thought I came up with 'profound' autism.

 

Definition of profound (adjective)

deep; knowledgeable; thorough; intense; serious

 

Generally though, I just refer to autism. It's a lot simpler.

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Hi

 

I'm new so go easy on me please :D

 

 

My youngest son is autistic ! my nephew is also autistic my 2nd oldest son has aspergers

 

now my youngest son who's 6 is verbal lots repeated but can speak my nephew is 7 and can't say 1 word , i refer to them not as high and low but as verbal and non-verbal

 

My sister says severe autism for her son and mild for mine so i suppose everyone uses different words

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I dunno Liz - I find it hard to know what to say. I dont like using the term low functioning for Logan because it seems derogatory but it seems to be used quite widely. Normally if I'm talking about him I'll say he's autistic with additional developmental delay - I can't tell anyone if Logan is intelligent yet because we dont know!

 

Its such a minefield. I think awareness is increasing, at least amongst people I know and I have been asked several times where on the spectrum he would be, at which I have to say at the lower functioning end because technically he is.

 

Lynne x

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I could be described as severely Autistic but a high-functioning person, that's where the dilemma begins. The opposite can be the case for others and beyond that the configurations of an individual are limitless.

 

My own opinion on it is that there is no such thing as a low-functioning human being; I've not seen a model that doesn't eventually contradict itself once examined enough. A mind is never idle, there is never a point in a person's entire lifetime when they are not thinking of something even when they're asleep. Thought is like fire; the more of it there is the more of it there can multiply and increase in volume. What is not recognised often is that there are many different thoughts and kinds of thought that any one person can have. You can imagine a lot, reflect a lot, logically deduct a lot and what you do most of invariably turns out to be the one you come to be best at in the long run.

 

Because there is no such thing as a person who ever thought of absolutely nothing in my view, brains have never been anywhere near running on empty.

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Com's friend is very obviously autistic, but Com masks his autism so well that often you can't really tell. Yet S is the one who can cope with school and is socially motivated but Com can't and isn't.

His mum and I have discussed HFA etc and decided it's all about presentation - what shows on the surface, not severity.

 

So I think that describing S's autism as being on the surface and Com's as being hidden or below the surface is more useful even though most would probably use high and low functioning or mild and severe when looking at them - it's the same condition it just shows in a different way and has a different impact on their lives

 

Zemanski

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My son was diagnosed as autistic in the late 80s. At the time we were told that only one other person had been diagnosed in the previous 10 years in our area. When I started as a TA in 1996 and explained that my son was autistic I clearly remember that very few of the staff had heard of it. One teacher even asked me if I had problems with my sons wheelchair!

I find the term autistic spectrum disorder very vague and unhelpful and must be an absolute nightmare for the parents of recently diagnosed children. Parents want to know what the future holds and need as much information as possible to make informed choices and sadly this isnt happening.

My son is now 20 and he is suffering because of the lack of clarity about autism. He left school in 2004 and SS have been unable to provide him with appropriate day care because the model of autism they have bears no resemblance to my son.

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M has a dx of aspergers because he started talking at the age of 1 and has always been very articulate. His withdrawal and rejection of others, his difficulties understanding social cues , his misinterpretation of other's intentions, his fixed ideas ... all correspond more to autism. Compared to other children of his age with Asperger's, M is more withdrawn and could be considered to be profound autistic .

 

I don't like terms low/high functioning, severe/mild autistic because they emphasize IQ and the fact that some people have difficulties with verbal communication doesn't mean that they have lower IQ. I also have mixed feelings about the term "asperger's syndrome" because the word syndrome is usually seen as a group of symptoms that indicate or characterize a disease, psychological disorder, or other abnormal condition, and it sounds to some people as if things will be OK once you have corrected or cured the symptoms, or as in M's case, the school always question his diagnosis because he doesn't show all the signs of AS. He hides his autism, because he hates being different, behind a mask which is a failed imitation of how other boys behave. In a spectrum, he would be at one extreme in verbal ability and at the other end in social skills and communication.

 

Curra

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In a spectrum, he would be at one extreme in verbal ability and at the other end in social skills and communication.

Curra

 

I agree with this Curra.

 

At our last meeting with the Consult. I asked her about Aspergers and my daughters limited understanding etc - asking that is this 'normal' with Aspergers.

 

She told me that my daughter has been diagnosed ASD - and that Aspergers only 'best fits' her difficulties - that obviously she is on a broad spectrum and that there will be different areas where she falls along that, i.e. 'more autistic' in her understanding, social & communication etc. and that it is extremely unlikely that any child will fall specifically within the criteria just for Aspergers.

 

Jb

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i read this topic with interest and i would just like to thank zemanski you have summed up my 2 to a tee the reason i now know why ive been banging my head against a brick wall concerning school was what you said about your son,they do the same to they can hide it very well which made me think i was going mad,the senco teacher looks at me like ive escaped from a loony bin when i explain what they are like at home ive begun to realise a lot about my 2 in the last year and noticed a lot more by watching them and writing a lot down hope this post makes sense (no ive not been drinking) haha keep smilin luv karin :D:D:D

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I'm waiting for Tony Attwood's new book to come out - it apparently discusses the problems with identifying ASCs in girls who present very differently from boys and are often much more able to mask. It should have some interesting discussion on how autism presents in different children and why this might be.

 

Com views his autism as an bundle of different neurological sensory issues (mainly) which come together to induce the behaviours associated with autism - he has severe visual problems including prosopagnosia, face-blindness which make it almost impossible for him to identify people, read their emotions or intentions and retain information that enable him to communicate effectively when meeting someone (each conversation begins as in a new relationship because he can't identify the person even if he knows them quite well), these problems obviously lead to many of the social interaction problems associated with autism and yet are part of a separate neurological condition, other aspects of his sensory perception can also be identified as separate sensory effects rather than as 'autism' but they all come together to make him autistic.

Donna Williams describes this as 'a fruit salad' - each autistic person has a different combination of issues which impact on a person and the way that they relate to their environment resulting in a presentation of autism but each presentation is different. The impact of each aspect has a different influence on the person and consequently each person's autism is no more or less severe than anothers but the effect may appear more or less severe on the surface, only when you look deeper, or under the surface, can it be seen that children on the spectrum are more similar than different.

 

The diagnostic criteria are currently under revision and will be published in 2010. The intention is to clarify the diagnoses and understanding of the condition and its subgroups.

 

Hopefully, probably after the summer holidays, there will be a petition to the American psychiatric association who maintain those criteria to include sensory issues and this in itself will enable more research into this aspect and further clarity - while the criteria are purely behavioural as they are now we cannot hope to adequately understand the causes and effects of the sensory issues our children experience because they are not considered important enough to investigate on a systematic basis.

 

Zemanski

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Why not just go with the diagnosis you were given?

 

My son is high functioning and was diagnosed with high functioning autism - mild/moderate .. so I stick with that.

 

You could always go with "autistic" or "on the autistic spectrum" or perhaps say "he's at the higher end of the autistic spectrum which means he's more mildly affected than some". You could bypass it altogether and say "he has problems with communication and social interaction" if you didn't want to mention the A word at all.

 

I think sometimes we expect others to know what autism is ... and they really don't ... they have totally the wrong idea (they usually mention Rainman or talk about kids that can draw pictures from memory). Therefore if you discuss their actual difficulties rather than the label of their diagnosis people digest the information a lot better.

 

And yes, in my opinion you can be mildly autistic ... you usually find them amongst the undiagnosed.

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In my opinion, and the opinion of many people on the spectrum, you cannot be mildly autistic - you either are or you aren't.

 

A spectrum does not have ends; it is in fact circular rather than linear so there is no high or low end, it is just unfortunate that our main symbol representing a spectrum is a rainbow which does have ends although neither is higher or lower than the other.

 

how your autism presents is the issue, the impact of it on a person. Com has AS which has been described by professionals as mild, he was very verbal from a very early age, he is very able academically, but his difficulties are severe, even compared with some non-verbal autistic children I know. Com will almost certainly require a significant level of support for the rest of his life, that does not imply a 'mild' condition and even the LEA has finally admitted the 'mild' label is inappropriate and yet, on the surface, you can hardly tell his autism is there.

 

While people continue to view some autistic people as high functioning and others as low functioning children's actual strengths and weaknesses will be under/over-estimated and their needs will not be approached in a way that enables each of them to achieve their potential in life. If we really want to help other people understand what autism really is we have to drop these labels and look at the whole autistic child and unravel the roots of their problems so that we can support them to the best of our ability, whatever they are able or unable to do at the outset. Until we get past the stereotypes how can we expect others to do the same.

 

In my experience working with AS adults there is very little difference in presentation between those who were diagnosed as children and those who were diagnosed later in life - some of the people I know who have had to wait till their 40s and 50s for diagnosis have severe difficulties which have simply been ignored or masked. There is also little difference between many adults originally diagnosed with autism and others diagnosed with AS except where their speech and language or coordination difficulties for example impair their progress significantly and even then many have shown that, with the use of technology and/or support, they are just as capable of expressing complex ideas and opinions as other people and just as able to determine what they want to do with their lives in spite of the challenges that face them.

 

Zemanski

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Z

i would be intersted to read that, cos i fully beleive that my dd did not get diagnosis for so long cos girls do not present in same manner as boys, and i think i read somewhere, that girls are diagnosed more around 10ish?

whena wee boy lines his cars up in colours ect it is seenas odd, but a wee girls lines her dollys up she is playing school, or hospital or such like?

brain addled todays so i hope makes sense

C x

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Thanks for the replies. I have enjoyed reading them :).

 

I hadn't consciously thought about the high/low functioning label in terms of IQ more in terms of how much the person's autism impairs their abiliy to function and that is not necessarily dependent upon IQ. Agree too with the point about a child being at different stages on the spectrum for different things. My son's speech and language is probably the most autistic thing about him, his flexibility of thinking is the least with social and sensory somewhere in between. It is interesting how people classify their or their child's autism and I think sometimes it is appropriate becasue as I said above children at different ends have very different needs. I met the mum yesterday of a child with severe autism and she always talks about her child using those terms, it is important to her especially when she is talking to parents of other autistic children. I quite like how Earlybird described the spectrum as something you are along rather than a spectrum having a top or bottom. They described it as something fluid that children move long in either direction rather than a fixed point where the child would always remain

 

I very rarely think in terms of autism being mild though can see why some people use it. In my mind it's a fixed thing, you are autistic or not. Remember someone on here writing it's like saying someone is mildly pregnant! I think autism can impair people in different ways and to different degrees and maybe some are less impaired than others. Comparing to the child I mentioned above my son is less severely affected in his functioning and general well being but it's not to say his problems are 'mild' or not serios or important to him. I have another friend has a son who probably would tick all the boxes for a diagnosis of ASD but it's never actually been an issue so she's never taken it further. School are supportive, he's doing well, has a few friends and is a happy boy and is coping ok. Maybe more of the 'milder' affected individuals are situations like that though I suspect that a sizeable proportion of undiagnosed ASD is not because they are doing ok but because they are struggling on not realising or misdiagnosed as something else :(

 

Lx

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Bare in mind of course that a person's IQ can sometimes have nothing to do with Autism at all; they may have other conditions which would lower the score or have lived in an enviroment where any person would be boosted in their potential. So determining 'severity of Autism' through IQ isn't credible.

 

There is also no diagnostic criteria to seperate HF and LF Autistics, they are intangible terms for an intangible concept. I still get very annoyed with professionals that invoke 'severe' or 'mild' as I know they will distort any such challenge to this as aggression(which gives me some idea of how they are not best placed to observe Autistics).

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I agree Zem..........the term Mildly Autistic should be banned.I also don,t like and have never used the terms Low or High functioning in relation to my son.Since his dx when he was 6 his autism has changed greatly and continues to do so.His reactions to his autism also change too.I was recently lucky enough to here Genevieve Edmonds give a presentation , she referred to Autistic Spectrum Conditons rather than Disorders, I like this term and use it now to describe my son, he has an Autistic Spectrum Condition :D

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Hmmm - looks like there's a gap in the market for some kind of assessment terminology that is useful - I like Lucas's idea of a circle - it puts me in mind of those wheels you get to work out things like feng shui - do you think it would be possible to work out all the possible 'autistic personality types'.........like you get those psychometric tests that have 16 combinations and you end up with four letters - Introvert Idealist Organiser etc

 

 

...I'm not keen on 'low' or 'high' either - my son has no speech but lots of personality/affection and problem solving - he could find and retrieve a chocolate biscuit from ANYWHERE - stand back Indiana Jones!!

 

....and call me cynical but I say that this 'mild' business is being put forward to try and reduce entitlements to things like DLA

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I was trying to think of it in terms of myself and Ds1 and thinking that I'm not as severley affected by communication difficulties as he is. And then I thought, well, yes, for the most part, I can talk to people. But if I'm in a crowded noisy environment, or I'm worried and stressed about something I find it very very difficult to talk. It's like there's a wall or a locked door in my mind and I can't make my mouth work and get my thoughts out. So in those situations I can fully understand how difficult it must be for Tom to probably be thinking in perfect sentences (or how he thinks) but not being able to express himself.

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