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Autism Politics, Activism, and Media Representation
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[quote="auntyjack"][quote="Awiddershinlife"]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!![/quote] 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.[/quote]
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MishLuvsHer2Boys
Posted: Sun Mar 07, 2010 11:16 am
Post subject:
auntyjack wrote:
"“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.
I agree with you Auntyjack on this one as that is what happened with my oldest son, originally dx'd with PDD-NOS at 29 months solely based on the ADOS which only shows one day of observation compared to what he's like at home, etc... he was having a good day that day so trusting the ADOS alone bothers me. Once they did a combination of ADOS and ADI-R around 41 months old, he showed clearly as having Autism. He didn't receive as thorough of services under the PDD-NOS label as he did when they switched it to Autism. I really hope that encompassing it all into one dx. will help people understand that no matter how high or low functioning, services should still be provided.
TOGGI3
Posted: Sun Feb 28, 2010 3:22 am
Post subject: Re: APA and DSM work group on AS
shulamith wrote:
Let me get this straight- they're combining all these diagnoses into one ASD? Won't that mean much more generalized therapy and services, which won't be tailored to individual needs? Our special education system has enough problems with that.
Wrongplanet should sponsor some kind of protest about this. Anyone know how to get in touch with whoever maintains the site? I tried email, but never got a response. Maybe a message to his YouTube account. Also, we should email/write to APA.
actually I feel the effect will be quite the opposite. The problem with separating them is people get the idea that theres a specific set of issues for people with HFA and a specific set of issues for those with AS. But in reality someone diagnosed with AS could have just as many if not more difficulties than HFA and vise versa. They can also have certain issues people wouldnt think those with AS would have. It seems to me drawing a line in the spectrum makes no sense if you cant possibly define it consistently. For one its impossible to define where that line is because of the spectrum nature, for another its hard to say which side of that line a patient may fall under. What people are starting to realize, is its irrelevant whether someone is AS or HFA, what matters is recognizing the individual difficulties regardless of what they are and understanding they are autism related. In my opinion, people will be much better served by merging the diagnosis into one category. Less focus on categorization, more focus on assisting the people seeking help.
JadedMantis
Posted: Tue Feb 16, 2010 3:55 am
Post subject: Re: APA and DSM work group on AS
shulamith wrote:
Let me get this straight- they're combining all these diagnoses into one ASD? Won't that mean much more generalized therapy and services, which won't be tailored to individual needs? Our special education system has enough problems with that.
Wrongplanet should sponsor some kind of protest about this. Anyone know how to get in touch with whoever maintains the site? I tried email, but never got a response. Maybe a message to his YouTube account. Also, we should email/write to APA.
Perhaps we need to wait and see how the new approach to add more finegrained details (clinical specifiers) to the diagnosis is to be implemented? By making the diagnosis less specific it might get more people to realise that the diagnosis is not the individual and that services need to be targeted to the particular needs.
DSM-5 299.0 rationale wrote:
Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.
shulamith
Posted: Sun Feb 14, 2010 2:49 pm
Post subject: APA and DSM work group on AS
Let me get this straight- they're combining all these diagnoses into one ASD? Won't that mean much more generalized therapy and services, which won't be tailored to individual needs? Our special education system has enough problems with that.
Wrongplanet should sponsor some kind of protest about this. Anyone know how to get in touch with whoever maintains the site? I tried email, but never got a response. Maybe a message to his YouTube account. Also, we should email/write to APA.
V001
Posted: Wed Feb 10, 2010 1:09 pm
Post subject: Press Releases at from the DSM-5 working group
Here is a pdf of a press release from the dsm-5 working group.
http://www.dsm5.org/Newsroom/Documents/Autism%20Release%20FINAL%202.05.pdf
And here is the text for those not wanting or having a pdf reader. I tryed to wordwrap but this was copyed from the pdf.
For Information Contact: EMBARGOED For Release Until:
Beth Casteel 703-907-8640 February 10, 2010, 12:01 AM EST
press@psych.org
Release No. 10-09
Jaime Valora 703-907-8562
jvalora@psych.org
EMBARGOED UNTIL FEBRUARY 10, 2010 12:01 AM EST
DSM-5 Proposed Revisions Include New Category of Autism Spectrum Disorders
Name Change for Mental Retardation Also Proposed
ARLINGTON, Va. (Feb. 10, 2010) – The American Psychiatric Association’s draft proposed diagnostic criteria for the fifth edition of Diagnostic and Statistical Manual of Mental Disorders(DSM) will include new categories for learning disorders and a single diagnostic category,“autism spectrum disorders” that will incorporate the current diagnoses of autistic disorder,Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified).The DSM is the standard classification of mental disorders used by mental health and other health professionals for diagnostic and research purposes. The APA today announced many of the proposed diagnostic criteria, which will be available for public comment until April 20. The proposed criteria will be reviewed and refined over the next two years. During this time, the APA will conduct three phases of field trials to test some of the proposed diagnostic criteria in real-world clinical settings.
The DSM-5 Neurodevelopmental Work Group members have also recommended that the diagnostic term “mental retardation” be changed to “intellectual disability,” bringing the DSM criteria into alignment with terminology used by other disciplines and the Department of Education. In addition, the Work Group is recommending that there be only one diagnosis for intellectual disabilities, with severity defined not only by IQ, but also by impairments in adaptive functioning. “In suggesting these revisions, the work group has considered the many advances in the field of autism and neurodevelopmental disorders, as well as the concerns of advocacy groups, family members and the medical groups who treat those living with autistic disorders,” said David Kupfer, M.D., chair of the DSM-5 Task Force. The proposed revisions to the neurodevelopmental disorders in DSM-5 also include a newoverarching category of learning disabilities, containing two subcategories: dyslexia (related to reading) and dyscalculia (related to mathematics). Edwin Cook, M.D., a member of the DSM-5 Neurodevelopmental Disorders Work Group, emphasized that the diagnostic criteria were relatedto a person’s age, intelligence and opportunity to acquire skills, and that individually administered, culturally appropriate and valid measures should be used to evaluate the learningdisabilities. “It’s important that we differentiate between the presence of a learning disability and the expected variations in individual abilities,” Dr. Cook said. The recommended DSM-5 draft criteria for autism spectrum disorders include a new assessment of symptom severity related to the individual’s degree of impairment. The draft criteria also specify deficits in two categories: 1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations) and 2) the presence of repetitive behaviors and fixated interests and behaviors. Additionally, in recognition of the Neurodevelopmental nature of the disorder, the criteria require that symptoms begin in early childhood. Clinicians must take into account an individual’s age, stage of development, Intellectual abilities and language level in making a diagnosis. “The Recommendation of a new category of autism spectrum disorders reflects recognition by the work group that the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders,” said Dr. Cook. In addition to specifying a range of severity of ASD, the criteria will include description of the individual’s overall development, course (e.g. regression), and language. “We expect that the proposed changes will improve the sensitivity and specificity of the criteria for autism spectrum disorders, so that clinicians may be able to more accurately diagnose these disorders.” Public Review of Comments to Draft Changes All proposed draft changes to DSM are being posted on the Web site
www.DSM5.org
for public review and comment until April 20. More information on the process for developing DSM-5 is also available on the Web site. Final publication of DSM-5 is planned for May 2013.
The American Psychiatric Association is a national medical specialty society whose physician members specialize in the diagnosis, treatment, prevention and research of mental illnesses, including substance use disorders. Visit the APA at
www.psych.org
and
www.healthyminds.org.
bdhkhsfgk
Posted: Sun Feb 07, 2010 6:08 am
Post subject:
I won't comment on this.
fidelis
Posted: Sat Jan 23, 2010 2:49 am
Post subject:
Also, I feel it's important to mention that I can't really ignore the ASD; I can only maintain certain skills that don't come naturally, like eye contact and body language. On the inside I have no clue what I am doing because it's happening at an unconscious level. I am acting with the exception that
I'm
Not acting.
fidelis
Posted: Sat Jan 23, 2010 2:44 am
Post subject:
It doesn't make much sense to me either. That's why I put it in quotes. It's not the best way to explain it. If I have to explain this is how: the part of my brain that filters my behavior is unconscious. By observing other people and learning to control my emotions I can sort of replicate any behavior that I experience consciously at an unconscious level. When I say control my emotions I don't mean the behaviors spawned from the emotions, I mean the actual emotions. I've been trying to teach my friend Zac, who also has ASD, how to do this trick, but the English language isn't designed for this type of communication.
buryuntime
Posted: Sat Jan 23, 2010 2:30 am
Post subject:
fidelis wrote:
On the topic of outgrowing autism. It is a very valid point. I was diagnosed with ASD but according to the current manual I no longer meet the requirements. I show no more social difficulty than anyone else I know. At the very worst It can be compared to a first day at a new school. I have no repetitive behaviors outside of the way I think. I have no obvious troubles with school work, or other semi-structured social practices. To most people, even psychologists, I appear to be a nuerotypical. I'm not though. I still have ASD. I have just learned to "ignore" it. That is possibly a reason why they would play with the idea of "outgrowing" ASD. It's not possible, as far as I know, to actually outgrow it. It's who you are.
How can you just "ignore" it? This makes no sense to me.
fidelis
Posted: Sat Jan 23, 2010 2:08 am
Post subject:
On the topic of outgrowing autism. It is a very valid point. I was diagnosed with ASD but according to the current manual I no longer meet the requirements. I show no more social difficulty than anyone else I know. At the very worst It can be compared to a first day at a new school. I have no repetitive behaviors outside of the way I think. I have no obvious troubles with school work, or other semi-structured social practices. To most people, even psychologists, I appear to be a nuerotypical. I'm not though. I still have ASD. I have just learned to "ignore" it. That is possibly a reason why they would play with the idea of "outgrowing" ASD. It's not possible, as far as I know, to actually outgrow it. It's who you are.
Featherways
Posted: Wed Nov 04, 2009 3:40 am
Post subject:
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.
auntyjack
Posted: Wed Nov 04, 2009 2:25 am
Post subject:
"“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.
MathGirl
Posted: Tue Nov 03, 2009 4:12 pm
Post subject:
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.
Irisrises
Posted: Sat Oct 03, 2009 3:18 pm
Post subject:
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
whitetiger
Posted: Wed Sep 30, 2009 2:36 am
Post subject:
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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