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Awiddershinlife
Yellow-bellied Woodpecker
Joined: Jul 05, 2009
Age: 56
Posts: 61
Location: north, south, east, west, up, down, and here
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 Posted: Sun Aug 09, 2009 2:46 pm Post subject: |
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| sg33 wrote: |
I think that the right track would be to emphasize our solidarity when it come to political and social change, but to recognize that political solidarity is not a basis for medical classification. The medical community should maintain and refine any useful clinical distinctions according to medical evidence. We should not pressure the medical community as a political tactic. Accurate medical classification is necessary in order to tailor medical care, educational and vocational support, and other services to the individual.
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Oh, you are absolutely correct about medical evidence over political whims
I would, however, like to influence the words used to describe the medical evidence.
An example might be
Instead of:
| DSM IV wrote: |
A. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
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The new addition reads:
| DSM V wrote: |
A. Intensely focused patterns of behavior, interests and activities, as manifested by at least one of the following:
1. Scientific or artistic achievement for age
2. encompassing preoccupation with one or more intensely focused patterns of interest that is atypical either in intensity of focus
3. outwardly appearing inflexible adherence to specific, atypical routines or rituals
4. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
5. persistent preoccupation with parts of objects
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"Language has created the word ‘loneliness’ to express the pain of being alone. And it has created the word ‘solitude’ to express the glory of being alone."
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Awiddershinlife
Yellow-bellied Woodpecker
Joined: Jul 05, 2009
Age: 56
Posts: 61
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| Posted: Sun Aug 09, 2009 2:57 pm Post subject: |
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I also think we should clarify exactly which characteristics of AS are disabling in NTWorld. Issues where we do need support to function as contributing members of society.
If we are not careful we can "just a difference" our way to even less support and acceptance.
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"Language has created the word ‘loneliness’ to express the pain of being alone. And it has created the word ‘solitude’ to express the glory of being alone."
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glider18
Supporting Member
Joined: Nov 09, 2008
Posts: 2032
Location: Ohio
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| Posted: Wed Aug 12, 2009 3:29 pm Post subject: What will happen? |
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I haven't read all of the posts that have talked about this revision to the DSM-V. I was diagnosed on both the DSM-IV and the Gillberg---and met enough criteria on both to be diagnosed with Asperger's (although it is interesting to look at the language delay mentioned on the Gillberg---I spoke on time, but I had that unusual rhythmic thing going on, and I was not stressing parts of a sentence correctly to show a question, etc.---as evidenced by tape recordings of me as a child). What I am wanting to know is this, what is going to happen to those of us diagnosed with Asperger's? What will our label be? Will we still be on the autism spectrum? Anyone have any theories here?
I ask all of this because I am reflecting back on my diagnosis this last November of 2008. I was told that I might be HFA. And, after meeting the criteria for Asperger's on the DSM-IV, the Gillberg was used too---like it was already being anticipated that the DSM-IV was going to be revised.
Thank you for your thoughts here.
glider18
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Awiddershinlife
Yellow-bellied Woodpecker
Joined: Jul 05, 2009
Age: 56
Posts: 61
Location: north, south, east, west, up, down, and here
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| Posted: Wed Aug 12, 2009 4:03 pm Post subject: Re: What will happen? |
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| glider18 wrote: | it is interesting to look at the language delay mentioned on the Gillberg---I spoke on time, but I had that unusual rhythmic thing going on, and I was not stressing parts of a sentence correctly to show a question, etc.---as evidenced by tape recordings of me as a child). What I am wanting to know is this, what is going to happen to those of us diagnosed with Asperger's? What will our label be? Will we still be on the autism spectrum? Anyone have any theories here?
glider18 |
That language delay criteria was obviously put in by shrinks, not SLPs:
Aspies typically do have language delays, the delays just show up well after the age of 3 years (i.e. they do not have the whole body dyspraxia that designates between autism & aspergers, and which impedes speech development). The typical aspie language delay surfaces in late elementary school and can be especially problematic by high school. Language delays frequently seen in aspies include narrative, figurative, pragmatic, & nonverbal language development as well as word finding, selective mutism, and hyperlexia. This is different from typical NT language delays for which the language batteries (CELF, TOLD, OWLS, CASL, etc.) and even IQ assessment tools are designed. That’s why people with very high IQs can be functionally incompetent (“if only he would try harder” or “she is just manipulative” – right!) outside of their focused areas of interests.
While many aspies might have incredible vocabularies, use complex syntax fluently, and will gather prodigious amounts of facts to share about their favorite subjects, the subtleties of language, such as irony and humor, or the give-and- take nature of a conversation is typically delayed or impaired. Sometimes aspies have difficulty talking and listening synchronistically. Aspies also might have difficulty with auditory processing. Many aspies find it challenging to learn, not how to speak to others, but how to use language socially to communicate face to face.
Nonverbal communication plays a huge part in aspie communication deficits. Estimates of how much an autistic misses of nonverbal communication range from 30% to 60%. Imagine reading a chapter on which you will be quizzed that has 30% to 60% of each page cut out. Realize that the consequence of failing this quiz elicits ostracization and bullying that is condoned by some authority figures**. Expressive nonverbal communication is also problematic.
Also, eye-contact is an overwhelming sensation for some aspies and other sensory input is shut down while it is occurring (e.g. listening to the peer or authority figure. There are innumerable tricks to not quite looking someone in the eye while appearing to do so. There are threads devoted to it.
In addition to language, aspies’ speech may be affected. It is sometimes marked by a steady rhythm, over inflection, or a monotone pitch. There can be some dyspraxia. Aspies can also be unaware of the volume of their voice and so do not modulate match their surroundings. This aspect of communication elicits condoned bullying from peers.
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"Language has created the word ‘loneliness’ to express the pain of being alone. And it has created the word ‘solitude’ to express the glory of being alone."
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auntyjack
Pileated woodpecker
Joined: Feb 03, 2006
Posts: 185
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| Posted: Thu Sep 10, 2009 2:13 pm Post subject: |
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| sg33 wrote: | | but it makes no sense to eliminate useful diagnostic categories for political reasons. |
From what I understand, the problem is that the diagnostic categories are not really useful. For example, I work with a child who has 3 dxs. PDD-NOS, Asperger Syndrome and Autism Spectrum Disorder. These were all gained in Britain, New South Wales and Tasmania in the same 12 months. Another instance is the situation where technically someone with a speech delay within the triad should not get a dx of Aspergers. With improved speech, many get rediagnosed from Autism to AS e.g. Temple Grandin. So if that is happening, speech delays should not be used to differentiate between AS and Autism.
Similarly IQ over 70 is generally considered to indicate Aspergers, however after improving language skills, many children who were previously dxd Autistic due to their language and cognitive delays then are able to demonstrate higher cognitive abilities which either puts them into the HFA or AS categories depending on the diagnostician.
Then there is the problem of Sensory issues not being considered as part of dx when for many of us, those are a problem or a blessing or both.
I think they do need to rethink the diagnostic categories. I am not sure that they are heading in the right direction and I also think they need input from autistics with appropriate qualifications but discussion and review are essential. |
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Awiddershinlife
Yellow-bellied Woodpecker
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Age: 56
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| Posted: Thu Sep 10, 2009 3:19 pm Post subject: |
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The diagnosis of autism is artificial. It is just a way to organize our thinking about people who have these issues. My problem with the DMS is that everything is given a negative spin. For example the ability to directing one's passions to a specific goal without being distracted by social intrusions and peer pressure has revolutionized society throughout homosapian's history, yet it is now considered a disease and described as "Restricted repetitive & stereotyped patterns of behavior, interests and activities". This is the gift of autism/asperger!!
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NOTHING ABOUT US WITHOUT US
cELEBRATE dIVERSITY: alL KiNDs of mIndS
"Language has created the word ‘loneliness’ to express the pain of being alone. And it has created the word ‘solitude’ to express the glory of being alone."
Paul Tillich |
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auntyjack
Pileated woodpecker
Joined: Feb 03, 2006
Posts: 185
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| Posted: Fri Sep 11, 2009 4:41 am Post subject: |
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| Awiddershinlife wrote: | | The diagnosis of autism is artificial. It is just a way to organize our thinking about people who have these issues. My problem with the DMS is that everything is given a negative spin. For example the ability to directing one's passions to a specific goal without being distracted by social intrusions and peer pressure has revolutionized society throughout homosapian's history, yet it is now considered a disease and described as "Restricted repetitive & stereotyped patterns of behavior, interests and activities". This is the gift of autism/asperger!! |
You are correct about this. The general population cannot concieve of variation from the norm as a positive. This is, I believe, largely due to the failure of most educators to respond to the need to teach individuals according to their learning styles without the threat of a court case.
I find it bizarre that any minority group can be viewed as disabled e.g. gifted, ethnic. They also find it hard to understand that my most major challenges e.g. perseveration that causes me endless grief is also a phenomenal ability that has enabled me to achieve a great deal. |
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Awiddershinlife
Yellow-bellied Woodpecker
Joined: Jul 05, 2009
Age: 56
Posts: 61
Location: north, south, east, west, up, down, and here
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| Posted: Fri Sep 11, 2009 2:47 pm Post subject: |
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I totally agree that there is a tendency amoung professionals to confuse a label with the individual - and then to assume an exagerated level of incompetence, esp if there is a communication barrier.
I really want the words used to describe autism/asperger to be carefully chosen for their impact on how professionals percieve us, i.e. to recognise the gifts of autism (then hope for a trickle down effect for the rest of the people we deal with).
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NOTHING ABOUT US WITHOUT US
cELEBRATE dIVERSITY: alL KiNDs of mIndS
"Language has created the word ‘loneliness’ to express the pain of being alone. And it has created the word ‘solitude’ to express the glory of being alone."
Paul Tillich |
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Grace09
Raven
Joined: Aug 31, 2009
Posts: 119
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| Posted: Wed Sep 23, 2009 5:22 pm Post subject: |
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| sg33 wrote: | | I think that the right track would be to emphasize our solidarity when it come to political and social change, but to recognize that political solidarity is not a basis for medical classification. The medical community should maintain and refine any useful clinical distinctions according to medical evidence. We should not pressure the medical community as a political tactic. Accurate medical classification is necessary in order to tailor medical care, educational and vocational support, and other services to the individual. |
I thought that the DSM Dx were not Medical Dx. I thought it was two different things. A medical Dx is treated by the medical model which is different than a psychological/psychiatric Dx. It's a completely different plan of care when you have a medical Dx. |
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whitetiger
Passionate Advocate
Joined: Feb 04, 2009
Age: 40
Posts: 1509
Location: Oregon
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| Posted: Wed Sep 30, 2009 2:36 am Post subject: |
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Well, at least they're only asking the question of whether it is possible to be cured. It's not like they definitely decided that. It's a good question to ask, but it does seem ridiculous. Even very successful auties like Temple Grandin still think like auties. It's a style of neurological processing that couldn't possibly go away, although social skills might improve.
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Irisrises
Snowy Owl
Joined: Oct 10, 2007
Posts: 166
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| Posted: Sat Oct 03, 2009 3:18 pm Post subject: |
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| auntyjack wrote: | | sg33 wrote: | | but it makes no sense to eliminate useful diagnostic categories for political reasons. |
From what I understand, the problem is that the diagnostic categories are not really useful. For example, I work with a child who has 3 dxs. PDD-NOS, Asperger Syndrome and Autism Spectrum Disorder. These were all gained in Britain, New South Wales and Tasmania in the same 12 months. Another instance is the situation where technically someone with a speech delay within the triad should not get a dx of Aspergers. With improved speech, many get rediagnosed from Autism to AS e.g. Temple Grandin. So if that is happening, speech delays should not be used to differentiate between AS and Autism.
Similarly IQ over 70 is generally considered to indicate Aspergers, however after improving language skills, many children who were previously dxd Autistic due to their language and cognitive delays then are able to demonstrate higher cognitive abilities which either puts them into the HFA or AS categories depending on the diagnostician.
Then there is the problem of Sensory issues not being considered as part of dx when for many of us, those are a problem or a blessing or both.
I think they do need to rethink the diagnostic categories. I am not sure that they are heading in the right direction and I also think they need input from autistics with appropriate qualifications but discussion and review are essential. |
QFT |
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MathGirl
Phoenix
Joined: Apr 12, 2009
Age: 18
Posts: 756
Location: Toronto, ON
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| Posted: Tue Nov 03, 2009 4:12 pm Post subject: |
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So now they're bringing this issue back. They're still on it, after all...
http://www.the-dispatch.com/article/20091103/ZNYT04/911033004?Title=A-Powerful-Identity-a-Vanishing-Diagnosis
I agree with Temple Grandin... sort of... but yeah, people with Asperger's can be quite different from those with classic autism. It feels wrong to lump them all together into one category.
But on the other hand, they're all just labels and nothing else.
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auntyjack
Pileated woodpecker
Joined: Feb 03, 2006
Posts: 185
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| Posted: Wed Nov 04, 2009 2:25 am Post subject: |
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"“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”"
I would agree with Ari on this. Some of the people I have discussed the changes to the DSM with have expressed opinions which indicate that they identify with the abilities often associated with Asperger Syndrome. These are the same people who are adamant that Asperger Support groups are only for "high functioning" people. In my opionion, there are two problems with this. One is to determine what high functioning actually is, particularly as we may vary on any given day or part thereof and also, because I feel a closer connection with Autistics who have moderate to severe diagnoses than I do to the general population. I think the new categories reflect that better, although they are not perfect. The other factor is that the DSM is not static. As more is learned about autism, I am sure that they will find subgroups which can be identified objectively and then those can become DSM categories.
At present many people with high needs miss out on services because PDD-NOS or Aspergers is not recognized in their area. That is simply wrong and has got to stop. |
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Featherways
Snowy Owl
Joined: Nov 06, 2005
Posts: 142
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| Posted: Wed Nov 04, 2009 3:40 am Post subject: |
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I agree that there should be one dx of "Autism Spectrum Condition" with notes and action plans on functioning levels and co-existing problems (sensory issues, dyspraxia, ADHD, epilepsy, whatever else).
My experience is that many people regard Asperger syndrome as "mild" and therefore needing nothing, and say that because we're not (in their view) autistic, we have no right to comment on autism issues. Wrong on both counts. There's not a scrap of difference between the apparent presentation of symptoms and differences of (say) Temple Grandin (autistic) and mine (Asperger syndrome). What possible use is it to anyone to differentiate autism/Asperger syndrome on the basis of whether we could speak at 2 or 4 or 6or 10 or 20 years of age? That's a tiny, tiny part of our set of differences, even if it bothers NT people a heck of a lot.
I'm happy to be an Aspie but I'm not going to mind being re-categorised as just 'autistic' at all. Others of course may have a different view. |
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