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10 May 2008, 4:48 pm
I did a talk at a training session for the NAS befriender scheme that I'm involved in. I've done my training already. This is a scheme were members of the public volunteer to befriend individuals on the spectrum that have opted in to the scheme. You are matched with a befrendee, and their family if they are still a minor (pending criminal checks an references).
I was a little nervous, but I think it went quite well.
When I got home I was pacing around for an hour (I pace to express emotion and to think). Now I'm knackered but relieved.
The first part of my talk was about my life and my experiences of living with ASD, which I won't bore you with. The second part starts off with what I think the public perception of ASD and everything else currently is, which is not merely a guess but how I have seen it described even by quite well respected representatives and organisations. I decided early on that I was going to be quite provocative. Not to be needlessly offensive but to illustrate the point and provide and all round perception from the extremely ignorant to the average. So I told them not to be offended. Then afterwards I describe how I like to think of ASD and everything else, which is basically my Autistic Spectrum Components concept. I made clear that neither of them were the views of the NAS, and the first one wasn't my view either. I didn't write notes but a rough transcript is as follows:
Quote:
PUTS UP THIS DIAGRAM:
Like I said this is the 1 Dimensional 'Straight Line' Model
What you have here is a straight line with Lower Functioning Autism at one end and Higher Functioning Autism at the other. Then you have various other labels such as Aspergers’s, and Non-Verbal learning Disorder that are almost joined to the spectrum by a broken line in some peoples’ view, and also PDD-NOS dotted about the place.
WAS ASKED TO EXPLAIN PDD-NOS BY TRAINER
PDD stands for Pervasive Development Disorder. PDDs are wider than clinical ASD and include various developmental conditions such as schizophrenia, Retts Syndrome, Childhood Degenerative Disorder, etc.
NOS stands for Not Otherwise Specified. It is used in medicine as a placeholder diagnosis when a specific condition cannot be diagnosed at the time. However some ‘experts’ get confused by this and treat PDD-NOS as if it was a specific type of Autism, but none of these ‘experts’ can agree on what exactly that is. It is mildly amusing seeing them argue about the various positions that the PDD-NOS label is placed on the ‘straight line’ model considering it needn’t imply autism in the first place.
LAUGHTER
OK, as I said you’ve got lower functioning and higher functioning autism. There is dividing line between the two here at the IQ of 70. Anyone with an IQ under 70 is ‘lower functioning’. Anyone with an IQ of 70 or higher is ‘higher functioning’.
Just under the IQ of 70 you’ve got ‘Moron’…let me write that (WRITES ON WITH MARKER)…also known as ‘Henry Goddard’.
LAUGHTER
Does anyone know who Henry Goddard is?
AUDIENCE REPLIES ‘NO’
Henry Goddard came up with the word ‘Moron’ (from Greek ‘Moros’ meaning dull), in order to signify anyone with an IQ of 51-70.
He also used other words such as Imbecile and Idiot to describe people he termed ‘Feeble-minded’, or having a tendency toward mental retardation.
He was a famous psychologist and social eugenicist in the early 20th century. He believed that ‘feeble-minded’ people should not be encouraged to breed. He was responsible for popularising the Binet scale on which these terms are based.
How would he have described higher functioning individuals? ‘Weirdness’ perhaps?
Well, I said I was going to talk about the perception of everything else. So we might as well put ‘Normals’ on there (WRITES ON ‘NORMALS') You might as well have a barrier separating ‘Normals’ from Autistics (DRAWS ON WAVY LINE) Then you also have the ‘Mentally ill’ (WRITES ON), which as has also got a barrier. (DRAWS ON)
There could be a barrier between ‘Normals’ and ‘Mentals’ too, but you might as well put the autistics in-between to act as a buffer…
LAUGHTER
Ok…does anyone see anything wrong with this model? Say you have a point a long this line here, and you have two people that are presumably lie on this point. Obviously they are not the same person, but in terms of this model could you say they have the same 'functioning'?
VARIOUS ANSWERS. I ASK FOR THEM TO ELABORATE A BIT
SOMEONE REPLIES SAYING THAT THEY COULD EACH HAVE DIFFERENT CHALLENGES IN DIFFERENT AREAS
That’s pretty much right. The component traits that make up autism are not bolted together, they can move relative to one another for each individual. What the straight line model does is fixes all the components and flattens everything into a line as if it would be the same relative functioning all the way along. Also all these labels on and off the spectrum are pretty divisive and this IQ of 70 marker is completely arbitrary, there is no rhyme or reason for it being and indicator of functioning. As if IQ was the only thing needed to estimate a person’s level of functioning. You could have no arms or legs and have an IQ of 150, for example.
Now I’m going to talk about how I like to think of the spectrum and everything else
PUTS UP THIS DIAGRAM:
Autistic Spectrum Components
# Repetitive Behaviours and Interests (RBI)
# Language (L)
# Planning, Organization and Concentration (POC)
# Imaging and Recall (IR)
# Reasoning and Problem solving (RP)
# Sensory (S)
# Motor (M)
I call it ‘Autistic Spectrum Components’, which is just a concept at the moment. We have here some hypothetical components on each axis of this radar chart/spider graph, which is not the concept itself but quite a good way of demonstrating the multidimensional aspect of the spectrum. You could represent the data in however way you wanted to. The concept itself is treating each component part of ASD as a sliding scale in itself, and then testing each of the established competent that make up ASC in order to provide a unique profile of the individual. Of course this means that there is a huge range of variability.
I WAS THEN ASKED TO EXPLAIN WHAT A RADAR CHART IS. *FACEPALMS*. I DO MY BEST TO DESCRIBE WHAT IT IS
This is meant to be a useful tool for analysis. There is nothing to stop un-established components from being tested either, they are just not part of the formal testing until they are established. The only set requirements are the components and their test. The rest has to be from a neutral standpoint. But anyone with a theory could use the data for their analysis.
I WAS THEN ASKED TO EXPLAIN WHAT COMPONENTS I AM USING IN CASE SOMEONE CAN’T SEE THEM. I READ THEM OUT.
I REALISE I’M MISSING ONE AND SOMEONE ASKS WHAT ‘SI’ STANDS FOR
‘SI’ stands for Social Impairment. That obviously quite an important one…trust me to leave that out!
LAUGHTER
The most important thing about this concept is it enables you to do away with the arbitrary historical labels such as AS,PDD-NOS, NLD, HFA, LFA should you wish, so you could just use ‘Autistic Spectrum Disorder’ for general situations. Then, if and when you need it, you could use ASC to provide a snapshot profile. The key word is ‘snapshot’. It is a word that would be derided by some traditionalists, who consider your point on their straight line model not to have any variability over time. This plot here (TRACE OVER PLOT LINE WITH FINGER) is a snapshot of a hypothetical person using ASC
Like I said this is the 1 Dimensional 'Straight Line' Model
What you have here is a straight line with Lower Functioning Autism at one end and Higher Functioning Autism at the other. Then you have various other labels such as Aspergers’s, and Non-Verbal learning Disorder that are almost joined to the spectrum by a broken line in some peoples’ view, and also PDD-NOS dotted about the place.
WAS ASKED TO EXPLAIN PDD-NOS BY TRAINER
PDD stands for Pervasive Development Disorder. PDDs are wider than clinical ASD and include various developmental conditions such as schizophrenia, Retts Syndrome, Childhood Degenerative Disorder, etc.
NOS stands for Not Otherwise Specified. It is used in medicine as a placeholder diagnosis when a specific condition cannot be diagnosed at the time. However some ‘experts’ get confused by this and treat PDD-NOS as if it was a specific type of Autism, but none of these ‘experts’ can agree on what exactly that is. It is mildly amusing seeing them argue about the various positions that the PDD-NOS label is placed on the ‘straight line’ model considering it needn’t imply autism in the first place.
LAUGHTER
OK, as I said you’ve got lower functioning and higher functioning autism. There is dividing line between the two here at the IQ of 70. Anyone with an IQ under 70 is ‘lower functioning’. Anyone with an IQ of 70 or higher is ‘higher functioning’.
Just under the IQ of 70 you’ve got ‘Moron’…let me write that (WRITES ON WITH MARKER)…also known as ‘Henry Goddard’.
LAUGHTER
Does anyone know who Henry Goddard is?
AUDIENCE REPLIES ‘NO’
Henry Goddard came up with the word ‘Moron’ (from Greek ‘Moros’ meaning dull), in order to signify anyone with an IQ of 51-70.
He also used other words such as Imbecile and Idiot to describe people he termed ‘Feeble-minded’, or having a tendency toward mental retardation.
He was a famous psychologist and social eugenicist in the early 20th century. He believed that ‘feeble-minded’ people should not be encouraged to breed. He was responsible for popularising the Binet scale on which these terms are based.
How would he have described higher functioning individuals? ‘Weirdness’ perhaps?
Well, I said I was going to talk about the perception of everything else. So we might as well put ‘Normals’ on there (WRITES ON ‘NORMALS') You might as well have a barrier separating ‘Normals’ from Autistics (DRAWS ON WAVY LINE) Then you also have the ‘Mentally ill’ (WRITES ON), which as has also got a barrier. (DRAWS ON)
There could be a barrier between ‘Normals’ and ‘Mentals’ too, but you might as well put the autistics in-between to act as a buffer…
LAUGHTER
Ok…does anyone see anything wrong with this model? Say you have a point a long this line here, and you have two people that are presumably lie on this point. Obviously they are not the same person, but in terms of this model could you say they have the same 'functioning'?
VARIOUS ANSWERS. I ASK FOR THEM TO ELABORATE A BIT
SOMEONE REPLIES SAYING THAT THEY COULD EACH HAVE DIFFERENT CHALLENGES IN DIFFERENT AREAS
That’s pretty much right. The component traits that make up autism are not bolted together, they can move relative to one another for each individual. What the straight line model does is fixes all the components and flattens everything into a line as if it would be the same relative functioning all the way along. Also all these labels on and off the spectrum are pretty divisive and this IQ of 70 marker is completely arbitrary, there is no rhyme or reason for it being and indicator of functioning. As if IQ was the only thing needed to estimate a person’s level of functioning. You could have no arms or legs and have an IQ of 150, for example.
Now I’m going to talk about how I like to think of the spectrum and everything else
PUTS UP THIS DIAGRAM:
Autistic Spectrum Components
# Repetitive Behaviours and Interests (RBI)
# Language (L)
# Planning, Organization and Concentration (POC)
# Imaging and Recall (IR)
# Reasoning and Problem solving (RP)
# Sensory (S)
# Motor (M)
I call it ‘Autistic Spectrum Components’, which is just a concept at the moment. We have here some hypothetical components on each axis of this radar chart/spider graph, which is not the concept itself but quite a good way of demonstrating the multidimensional aspect of the spectrum. You could represent the data in however way you wanted to. The concept itself is treating each component part of ASD as a sliding scale in itself, and then testing each of the established competent that make up ASC in order to provide a unique profile of the individual. Of course this means that there is a huge range of variability.
I WAS THEN ASKED TO EXPLAIN WHAT A RADAR CHART IS. *FACEPALMS*. I DO MY BEST TO DESCRIBE WHAT IT IS
This is meant to be a useful tool for analysis. There is nothing to stop un-established components from being tested either, they are just not part of the formal testing until they are established. The only set requirements are the components and their test. The rest has to be from a neutral standpoint. But anyone with a theory could use the data for their analysis.
I WAS THEN ASKED TO EXPLAIN WHAT COMPONENTS I AM USING IN CASE SOMEONE CAN’T SEE THEM. I READ THEM OUT.
I REALISE I’M MISSING ONE AND SOMEONE ASKS WHAT ‘SI’ STANDS FOR
‘SI’ stands for Social Impairment. That obviously quite an important one…trust me to leave that out!
LAUGHTER
The most important thing about this concept is it enables you to do away with the arbitrary historical labels such as AS,PDD-NOS, NLD, HFA, LFA should you wish, so you could just use ‘Autistic Spectrum Disorder’ for general situations. Then, if and when you need it, you could use ASC to provide a snapshot profile. The key word is ‘snapshot’. It is a word that would be derided by some traditionalists, who consider your point on their straight line model not to have any variability over time. This plot here (TRACE OVER PLOT LINE WITH FINGER) is a snapshot of a hypothetical person using ASC
That was basically it. I then went on to questions. There are some things I would have like to explain in more detail but the words didn’t come to me at the time, but overall I think I did OK. II'm not sure how well they understood it but hopefully I left an impression.
10 May 2008, 5:21 pm
10 May 2008, 5:22 pm
10 May 2008, 5:24 pm
2ukenkerl wrote:
I ALSO like the joke, even if unintended about your leaving out SI!
My best jokes are unintended, and usually involve ASC. Don't go there...
10 May 2008, 6:42 pm
Smelena
Cure Neurotypicals Now!
Joined: 1 Apr 2007
Age: 64
Gender: Female
Posts: 1,950
Location: Australia
10 May 2008, 9:24 pm
11 May 2008, 5:08 am
11 May 2008, 5:14 am
11 May 2008, 6:32 am
11 May 2008, 5:42 pm
Page 1 of 1 [ 10 posts ]
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