Most autistic people are high functioning

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cyberdad
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05 Mar 2016, 5:50 pm

germanium wrote:
cyberdad wrote:
Ettina wrote:
No, I'm sick of people saying that high functioning people shouldn't have visibly or a say in the autism community because 'real autism' is low functioning.


There is no autism community as such. There is a small but vocal group of very high functioning individuals who publicly advocate on behalf of other people with autism and there is an online community of Aspies whom communicate online but don't actually meet each other in person and finally parents of children with autism who joins groups or associations of who's members are parents in the same situation as them. People with low functioning autism have no say in anything in public life and struggling to get their voices heard...let alone feeling like they are connected to people like yourself


In my local area I go to a meetup for asperger & other people with social issues called Square Pegs & Other Social Misfits. So you see there are gatherings fore ASD people. These are indeed physical face to face meetups.

Glad to hear it :)



cyberdad
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05 Mar 2016, 5:53 pm

Jo_B1_Kenobi wrote:
germanium wrote:
cyberdad wrote:
Ettina wrote:
No, I'm sick of people saying that high functioning people shouldn't have visibly or a say in the autism community because 'real autism' is low functioning.


There is no autism community as such. There is a small but vocal group of very high functioning individuals who publicly advocate on behalf of other people with autism and there is an online community of Aspies whom communicate online but don't actually meet each other in person and finally parents of children with autism who joins groups or associations of who's members are parents in the same situation as them. People with low functioning autism have no say in anything in public life and struggling to get their voices heard...let alone feeling like they are connected to people like yourself


In my local area I go to a meetup for asperger & other people with social issues called Square Pegs & Other Social Misfits. So you see there are gatherings fore ASD people. These are indeed physical face to face meetups.



In my local area people from a wide range of backgrounds and with a wide range of connections to autism meet up. This includes high functioning individuals, low functioning individuals and their carers / parents, and parents of children on the spectrum. It is a real community. In fact it was the mum of an autistic boy who recognised the signs of autism in me. I also suspect that my autism helped me relate to and understand her and her son which helped us all become friends. I don't think it's true that people with low functioning autism are always denied a voice in the community becuase that's just not true around here. Another friend of mine has an autistic daughter who is low functioning and we went on holiday together, her and her daughter and me and my son. As we worked out what we wanted to do each day everyone had a say, including my friend's daughter. It did take time and patience to underdstand what she wanted but it was really worth it because she was so happy to be part of everything and to have her say, even if some of that was via a computer thingie she uses.


Good! this is really the type of interaction that should be promoted in terms of building a "wider" autism community



cyberdad
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05 Mar 2016, 5:54 pm

Ettina wrote:
cyberdad wrote:
finally parents of children with autism who joins groups or associations of who's members are parents in the same situation as them. People with low functioning autism have no say in anything in public life and struggling to get their voices heard...let alone feeling like they are connected to people like yourself


This is the community I was referring to. The people who speak 'for' low functioning autistic people. Although I would say there is also the 'self-advocates who use AAC' community, and I tend not to have much of a problem with that group.

Yes but that's not an autism community, it's a community of parents...



cyberdad
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05 Mar 2016, 6:05 pm

btbnnyr wrote:
LFA is just autism with mental retardation, and HFA is just autism without mental retardation.
A small percentage of LFA may not be as mentally retarded as they are measured to be due to severe dyspraxia, but they are not representative of most LFA.


Cyllya1 wrote:
The general populace responds to the the high-functioning and low-functioning labels by thinking that high-functioning is effectively the same as not having autism. That's not the fault of the labels themselves though. I think without the labels, people would still see how different the relatively less-impaired folks are and decide that means they are "normal."


The definitions for low/high functioning seem to shift, there's current DSMV related levels 1-4, older DSMIV lables i.e. Aspies versus auties and "unofficial" definitions LFA, HFA etc... I don't pay too much heed to such labels.

As a parent there's two very specific distinctions
- whether you can live independently
- whether you rely on others to live

The first group may as well be NTs.

In the second group there's those who require ongoing assistance but can live in shared accommodation and those who require institutional care. My own goal is to make sure my daughter can at the very least be semi-independent. What she's called is the least of my concerns...



btbnnyr
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05 Mar 2016, 6:45 pm

I don't believe in unofficial definitions of autism as relying on others, not passing as NT, not having a job, not having friends, not having romantic relationship, any combo of these, etc.

I go by autism as officially defined and autism as defined in research, which splits clearly into LFA vs. HFA by IQ on standard IQ tests due to autism/mental retardation conflation in LFA.

People defining autism as whatever they want is bizarre and should be avoided.


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Ettina
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05 Mar 2016, 11:25 pm

cyberdad wrote:
As a parent there's two very specific distinctions
- whether you can live independently
- whether you rely on others to live

The first group may as well be NTs.

In the second group there's those who require ongoing assistance but can live in shared accommodation and those who require institutional care. My own goal is to make sure my daughter can at the very least be semi-independent. What she's called is the least of my concerns...


Ironically, many high functioning autistic people have trouble living independently. In this study, the high functioning group scored an average of 63 on the VABS - a measure of adaptive behavior that's normed like IQ. In other words, despite having an average IQ of 93, their independent living skills were what would be expected for someone with an IQ in the 60s (mild cognitive disability range). In fact, it wasn't much different from their lower-functioning sample (they called them low functioning, but many were what I'd consider medium-functioning instead) who had an average IQ of 53 and VABS score of 50.

There's a stereotype that only LFAs have trouble living independently, but really there are plenty of autistic people with average IQs and no language issues who still struggle with independent living. Interestingly, autistic people with cognitive disability often have adaptive skills on par for IQ, while those with average IQs have adaptive skills well below the level expected for their IQ.



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08 Mar 2016, 6:51 am

btbnnyr wrote:
If someone scores IQ>70 on a standard IQ test, they are considered to have high functioning autism, no matter how weird they appear.

Some years ago I followed the court case of infamous Australian mass murderer Martin Bryant in 1996. While incarcerated (pre guilty plea) Bryant was examined by court appointed psychiatrist Ian Sale, who diagnosed Bryant with Aspergers syndrome. Psychiatrist Paul Mullen, hired at the request of Bryant's legal counsel, also examined Bryant and also diagnosed with him with Aspergers. What was strange was both psychiatrists measured his full scale IQ as 66?

It would appear (based on the case of Bryant) that the old DSMIV definition of Aspergers as IQ>70 was not followed.



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08 Mar 2016, 4:09 pm

cyberdad wrote:
btbnnyr wrote:
If someone scores IQ>70 on a standard IQ test, they are considered to have high functioning autism, no matter how weird they appear.

Some years ago I followed the court case of infamous Australian mass murderer Martin Bryant in 1996. While incarcerated (pre guilty plea) Bryant was examined by court appointed psychiatrist Ian Sale, who diagnosed Bryant with Aspergers syndrome. Psychiatrist Paul Mullen, hired at the request of Bryant's legal counsel, also examined Bryant and also diagnosed with him with Aspergers. What was strange was both psychiatrists measured his full scale IQ as 66?

It would appear (based on the case of Bryant) that the old DSMIV definition of Aspergers as IQ>70 was not followed.


1996 is very early time in understanding and diagnosis of AS, so the IQ>70 standard might not have been in place then, as it is now for research studies in which it is most important to separate HFA to avoid conflation with mental retardation on research tasks with neural measures like eeg or fmri.


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08 Mar 2016, 9:27 pm

cyberdad wrote:
Ettina wrote:
cyberdad wrote:
finally parents of children with autism who joins groups or associations of who's members are parents in the same situation as them. People with low functioning autism have no say in anything in public life and struggling to get their voices heard...let alone feeling like they are connected to people like yourself


This is the community I was referring to. The people who speak 'for' low functioning autistic people. Although I would say there is also the 'self-advocates who use AAC' community, and I tend not to have much of a problem with that group.

Yes but that's not an autism community, it's a community of parents...


They call themselves 'the autism community', though.



cyberdad
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09 Mar 2016, 2:07 am

btbnnyr wrote:
cyberdad wrote:
btbnnyr wrote:
If someone scores IQ>70 on a standard IQ test, they are considered to have high functioning autism, no matter how weird they appear.

Some years ago I followed the court case of infamous Australian mass murderer Martin Bryant in 1996. While incarcerated (pre guilty plea) Bryant was examined by court appointed psychiatrist Ian Sale, who diagnosed Bryant with Aspergers syndrome. Psychiatrist Paul Mullen, hired at the request of Bryant's legal counsel, also examined Bryant and also diagnosed with him with Aspergers. What was strange was both psychiatrists measured his full scale IQ as 66?

It would appear (based on the case of Bryant) that the old DSMIV definition of Aspergers as IQ>70 was not followed.


1996 is very early time in understanding and diagnosis of AS, so the IQ>70 standard might not have been in place then, as it is now for research studies in which it is most important to separate HFA to avoid conflation with mental retardation on research tasks with neural measures like eeg or fmri.


DSMIV was published in 1994 so the aforementioned psychiatrists (both) stood by their diagnosis in 1996. Given this was recognised by a legal jurisdiction then (at least in Australia) there is at least legal evidence that a formal diagnosis of Aspergers/HFA does not require an IQ > 70



cyberdad
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09 Mar 2016, 2:10 am

Ettina wrote:
cyberdad wrote:
Ettina wrote:
cyberdad wrote:
finally parents of children with autism who joins groups or associations of who's members are parents in the same situation as them. People with low functioning autism have no say in anything in public life and struggling to get their voices heard...let alone feeling like they are connected to people like yourself


This is the community I was referring to. The people who speak 'for' low functioning autistic people. Although I would say there is also the 'self-advocates who use AAC' community, and I tend not to have much of a problem with that group.

Yes but that's not an autism community, it's a community of parents...


They call themselves 'the autism community', though.

Which is as meaningful as saying my own family (three members) declare we are also an autistic community...people can call themselves whatever they want...



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11 Mar 2016, 12:54 pm

cyberdad wrote:
btbnnyr wrote:
cyberdad wrote:
btbnnyr wrote:
If someone scores IQ>70 on a standard IQ test, they are considered to have high functioning autism, no matter how weird they appear.

Some years ago I followed the court case of infamous Australian mass murderer Martin Bryant in 1996. While incarcerated (pre guilty plea) Bryant was examined by court appointed psychiatrist Ian Sale, who diagnosed Bryant with Aspergers syndrome. Psychiatrist Paul Mullen, hired at the request of Bryant's legal counsel, also examined Bryant and also diagnosed with him with Aspergers. What was strange was both psychiatrists measured his full scale IQ as 66?

It would appear (based on the case of Bryant) that the old DSMIV definition of Aspergers as IQ>70 was not followed.


1996 is very early time in understanding and diagnosis of AS, so the IQ>70 standard might not have been in place then, as it is now for research studies in which it is most important to separate HFA to avoid conflation with mental retardation on research tasks with neural measures like eeg or fmri.


DSMIV was published in 1994 so the aforementioned psychiatrists (both) stood by their diagnosis in 1996. Given this was recognised by a legal jurisdiction then (at least in Australia) there is at least legal evidence that a formal diagnosis of Aspergers/HFA does not require an IQ > 70


It is unclear to me that IQ>70 standard was widely used in 1996, as it is now widely used in research, which I am talking about, since the main use of IQ>70 is to separate HFA from LFA in research, so autism can be studied in HFA which has no conflation problems with mental retardation. Sometimes, IQ cutoff is set at 80, as it is in my research project, or sometimes in children, it is set differently to take into account communication problems, like PIQ>70 required, but VIQ can be lower. I don't recall saying that formal diagnosis of AS requires IQ>70. I said that HFA and LFA are distinguished by IQ>70 in research, and regardless of one's level of adaptive functioning in everyday life, if one has IQ>70, they are considered HFA instead of LFA. The distinction is important, as researchers want to be sure they are studing autism not something else to understand autistic brain, cognition, and behavior, and that is only found in HFA, not LFA. HFA with significant manifestations of other mental disorders are also not included, in case the other disorders like ADHD or anxiety or depression are conflated with autism.


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11 Mar 2016, 3:11 pm

If autistics decided what the definition of high functioning was it would have been literally functioning ability not IQ.


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11 Mar 2016, 5:33 pm

ASPartOfMe wrote:
If autistics decided what the definition of high functioning was it would have been literally functioning ability not IQ.


I would still use IQ as the distinguishing factor, since I am interested in understanding pure autistic brain from a research perspective.

In education, distinguishing based on intellectual functioning seems also important, as I think that both HFA and LFA can learn, but methods used would not be the same for someone who is low vs. normal vs. high intelligence.


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