We are writing to you on behalf of the Autistic Self-Advocacy Network. ASAN has partnered with researchers at multiple universities to create the AASPIRE Gateway Project (www.aaspire.org/gateway). The AASPIRE Gateway Project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance. We are excited to be involved in research that is conducted with us, not just about us. The AASPIRE Gateway Project is recruiting participants with and without disabilities and participants on the autistic spectrum. You can find more information about the project in the announcement below. We would greatly appreciate it if you could forward information about the AASPIRE Gateway Project to anyone who may be interested in participating.
Regards,
Ari Ne’eman
Founding President
Scott Michael Robertson
Vice President
Board of Directors:
Paula C. Durbin-Westby
Meg Evans
Dora Raymaker
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
-------------------------
Participate in the AASPIRE Gateway Project
You are invited to participate in a continuing online research project called the AASPIRE Gateway Project. This online research project is conducted by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspireproject.org) in collaboration with Oregon Health & Science University, the University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network.
The AASPIRE Gateway Project is recruiting participants with and without disabilities, and participants on the autism spectrum, for a series of continuing online studies on topics such as health care, Internet use, online sense of community, identity, problem solving, and perspective taking. The goals of the online AASPIRE Gateway Project are
(1) to collect the Gateway Survey data;
(2) to use the Gateway Survey data to invite eligible participants to AASPIRE’s continuing online research studies; and
(3) to use the Gateway Survey data in AASPIRE’s continuing online research studies.
You may participate in the AASPIRE Gateway Project and contribute to continuing AASPIRE research studies if you are at least 18 years old, and you have access to the Internet.
The first step in joining the AASPIRE Gateway Project is completing the online AASPIRE Gateway Survey. The AASPIRE Gateway Survey asks about (a) personal information, such as age, gender, disability, education, and employment status, (b) information about which hand you prefer to use when doing activities such as writing with a pen or pencil, and (c) information about your personal preferences regarding interests, habits, and social interactions. Completing the AASPIRE Gateway Survey will take approximately 20-40 minutes. In return, you may choose to be entered into a drawing for a 1 in 25 chance to win a $25 gift certificate to Amazon.com or to receive 1 extra credit point in your introductory psychology class if you are a student at the University of Wisconsin-Madison.
Adults who identify as having a disability and adults who identify as being on the autistic spectrum are especially encouraged to participate in the AASPIRE Gateway Project.
If you're interested in participating in the AASPIRE Gateway Project, or would like to learn more about AASPIRE or the study, here are three ways you can get started:
1) Go to the study’s website at www.aaspire.org/gateway.
2) Send an email to info@aaspireproject.org.
3) Make a telephone call to Christina Nicolaidis, MD, MPH, at (503) 494-9602 or Morton Ann Gernsbacher, PhD, at (608) 262-6989.
OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network
Thursday, June 25, 2009
Monday, June 22, 2009
Tony Attwood Says What He Really Thinks about Cassandra Phenomenon and Affective Deprivation in his April 9, 2009 Video
http://www.autismhangout.com/news-reports/feature-programs.asp?id2=103
Note: The anti-“Cassandra” campaign has nothing to do with Tony Attwood personally but everything to do with his endorsement of the “Cassandra Phenomenon” (aka “affective deprivation,” “Cassandra Affective Deprivation Disorder,” etc.). We continue to hope that Dr. Attwood will address the situation and disassociate himself from the concept, even given this recent video release.
In this video, posted on AutismHangout, and titled April 9, 2009, Tony Attwood clearly states:
[minute 7:47 into video] “We have what we call the Cassandra Phenomenon.
In Greek mythology, Cassandra had the gift of prophecy, but the curse that no one would believe her. So what can happen is that, at home, you see these sorts of components, but other people will think ‘You’re mad, what do you look for in a relationship?’, etc.
“Now, what you tend to get is a sense of loneliness. Often, ironically, the partner is an extreme socialite, which was chosen by the person with Asperger’s so that in fact, they could have social guidance: a maternal, caring, compassionate person, who is very good at understanding his point of view, but may not be that he’s good at understanding your point of view.
“So the issue is going to be: loneliness, affection deprivation [minute 8:37 into the video].
“When the person is upset at themselves or upset about something they tend to go inwards and not share their concerns or emotions and may get by with the capacity of affection that I call a “cup,” not a “bucket, and this particular lady may have the capacity of a bucket and she gets a cup. And she feels depressed, very very common with those who are a partner… who have a partner with Asperger syndrome. Now, there are a number of good books in this area, most published by Jessica Kingsley Publishers, at www.jkp.com and then a new book just out, by Maxine Aston, which is a workbook for couples. Now, one of my concerns here is that other people may not believe you and some people you can’t convince it unless you say “Marry him and live with him!”
Continuing at [Minute 10:07]: “And what happens is, you become Aspie. It’s an infectious process, and she may not like the sort of person she’s become…
On May 8, 2009, Attwood posted his form letter on the FAAAS site, as a response to the Autistic Self Advocacy Network’s petition, and as a response to the very many individuals who have written to him over the years.
http://www.faaas.org/doc.php?29,358
Although in that letter, he claims that “Cassandra Affective Deprivation Disorder,” was coined by Maxine Aston and is not an official diagnostic category,” in fact, it’s quibbling.
Attwood himself started using, and still uses, the term “Cassandra Phenomenon” and also feels quite comfortable using “affective deprivation” at the same time that he publicly pretends to distance himself from the whole concept. In addition his unprofessional talk of the partner of a person with AS “becoming Aspie- it’s an infectious process” is both inaccurate and also demeaning. For people on the autism spectrum being compared with “infection,” and an infection that leads one to “not like what has become” one does wonder whether Attwood’s assertion in the form letter that “in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship" is accurate.
ASAN has addressed the inadequacy of the form letter here:
http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=43
If Tony Attwood has, within the past two months, stopped believing in and using the terms “Cassandra Phenomenon,” “affective deprivation,” and the metaphor of “infectious process” he should immediately inform the Autistic community, either via another form letter posted to FAAAS, on his website, or directly to Autistic individuals.
Note: The anti-“Cassandra” campaign has nothing to do with Tony Attwood personally but everything to do with his endorsement of the “Cassandra Phenomenon” (aka “affective deprivation,” “Cassandra Affective Deprivation Disorder,” etc.). We continue to hope that Dr. Attwood will address the situation and disassociate himself from the concept, even given this recent video release.
In this video, posted on AutismHangout, and titled April 9, 2009, Tony Attwood clearly states:
[minute 7:47 into video] “We have what we call the Cassandra Phenomenon.
In Greek mythology, Cassandra had the gift of prophecy, but the curse that no one would believe her. So what can happen is that, at home, you see these sorts of components, but other people will think ‘You’re mad, what do you look for in a relationship?’, etc.
“Now, what you tend to get is a sense of loneliness. Often, ironically, the partner is an extreme socialite, which was chosen by the person with Asperger’s so that in fact, they could have social guidance: a maternal, caring, compassionate person, who is very good at understanding his point of view, but may not be that he’s good at understanding your point of view.
“So the issue is going to be: loneliness, affection deprivation [minute 8:37 into the video].
“When the person is upset at themselves or upset about something they tend to go inwards and not share their concerns or emotions and may get by with the capacity of affection that I call a “cup,” not a “bucket, and this particular lady may have the capacity of a bucket and she gets a cup. And she feels depressed, very very common with those who are a partner… who have a partner with Asperger syndrome. Now, there are a number of good books in this area, most published by Jessica Kingsley Publishers, at www.jkp.com and then a new book just out, by Maxine Aston, which is a workbook for couples. Now, one of my concerns here is that other people may not believe you and some people you can’t convince it unless you say “Marry him and live with him!”
Continuing at [Minute 10:07]: “And what happens is, you become Aspie. It’s an infectious process, and she may not like the sort of person she’s become…
On May 8, 2009, Attwood posted his form letter on the FAAAS site, as a response to the Autistic Self Advocacy Network’s petition, and as a response to the very many individuals who have written to him over the years.
http://www.faaas.org/doc.php?29,358
Although in that letter, he claims that “Cassandra Affective Deprivation Disorder,” was coined by Maxine Aston and is not an official diagnostic category,” in fact, it’s quibbling.
Attwood himself started using, and still uses, the term “Cassandra Phenomenon” and also feels quite comfortable using “affective deprivation” at the same time that he publicly pretends to distance himself from the whole concept. In addition his unprofessional talk of the partner of a person with AS “becoming Aspie- it’s an infectious process” is both inaccurate and also demeaning. For people on the autism spectrum being compared with “infection,” and an infection that leads one to “not like what has become” one does wonder whether Attwood’s assertion in the form letter that “in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship" is accurate.
ASAN has addressed the inadequacy of the form letter here:
http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=43
If Tony Attwood has, within the past two months, stopped believing in and using the terms “Cassandra Phenomenon,” “affective deprivation,” and the metaphor of “infectious process” he should immediately inform the Autistic community, either via another form letter posted to FAAAS, on his website, or directly to Autistic individuals.
Monday, June 15, 2009
ASAN's Response to Dr. Tony Attwood
The Autistic Self Advocacy Network recently created a petition and a statement to the community regarding the need for Dr. Tony Attwood and Dr. Isabelle Hénault to disassociate themselves from hate groups that use stereotypes and pseudoscience to incite discrimination against Autistic people in family law and relationships. We received a reply from Dr. Attwood consisting only of a form letter, sent to numerous recipients, which wholly failed to address the central issue of his and Dr. Hénault's associations with Maxine Aston and FAAAS and the ongoing harm to Autistics and others with disabilities resulting from these associations. We consider Dr. Attwood's reply grossly inadequate and have set forth a point-by-point response below, with Dr. Attwood's statements in italic formatting.
Dr. Attwood: I would like to state quite clearly that having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent. Indeed, many of the people I know with autism and Asperger’s syndrome as clients and friends are exceptionally good parents and partners. Should a separation occur between partners and a Court examine the issue of custody of children and access then in my opinion, any decisions should be made on the basis of the abilities of each parent and not simply assume that a parent with autism or Asperger’s syndrome is incapable of being a good parent.
ASAN: In addition to the possibility that an Autistic person might be assumed to be automatically incapable of being a good partner and parent, which is the most extreme danger posed by false stereotypes of family violence, these stereotypes have given rise to more subtle forms of discrimination in family law. FAAAS has explicitly urged family law courts and social workers to view Autistic partners and parents as more likely than others to be abusive. An article by Sheila Jennings Linehan on the FAAAS website, entitled Representing Cassandra in Matrimonial Law, characterizes the non-Autistic spouse as "a normal individual subjected to prolonged moral distress" who is not believed when she "accurately predicts future harm to her children." Along with Maxine Aston, the article specifically cites you, Dr. Attwood, as authority for such statements. FAAAS member Harriet Simons presents seminars for social workers in which she makes similar claims. Your continued association with FAAAS suggests that you endorse these false claims and, as such, increases the risk that Autistics and others with neurological disabilities will face discrimination within the family law system.
Dr. Attwood: The term “Cassandra Affective Deprivation Disorder” has been coined by Maxine Aston. It is not an official diagnostic category. I do know that stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression. Effective relationship counselling by a counsellor knowledgeable in the area of autism and Asperger’s syndrome can significantly improve the relationship and help alleviate the signs of depression.
ASAN: By failing to acknowledge that stress within a relationship can contribute to depression for either partner, Dr. Attwood—and by your repeated endorsements of Maxine Aston in books and interviews—you are perpetuating the false claim that being in a relationship with an Autistic partner is psychologically harmful to a non-Autistic partner. There is no scientific basis whatsoever for suggesting that depression affects only the non-Autistic partner or that it is caused by affective deprivation related to the Autistic partner's responses. Several recent research studies specifically examining the affective dimensions of empathy and alexithymia found no impairment in the affective responses of Autistic individuals. (Rogers, Dziobek, Hassenstab, Wolf, & Convit, 2007; Berthoz & Hill, 2005; Silani, Bird, Brindley, Singer, Frith, & Frith, 2008.) Rather, cognitive and linguistic differences lead to misunderstandings. Thus, a presumption that the non-Autistic partner suffers from affective deprivation is unwarranted. The Autistic Self Advocacy Network recommends that those who counsel couples with one Autistic partner should adopt a nonjudgmental approach to identifying and constructively addressing misunderstandings that have occurred.
Dr. Attwood: According to my knowledge, there is no research to suggest that people with autism and Asperger’s syndrome are likely to be violent in a relationship to any greater degree than a typical person in the general population. I do know that a significant proportion of the clients that I see in my clinical practice express to me their concern in their ability to manage their temper but we now have programs such as Cognitive Behaviour Therapy to help those with autism and Asperger’s syndrome manage feelings such as anger. Problems with anger management also occur in the ordinary population but the nature of the treatment of difficulties with anger management must include an appreciation of the different experiences and cognitive profile of someone with an Autism Spectrum Disorder.
ASAN: Research studies have established that Autistics are no more likely to commit violent acts or violent crimes than the general population (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Notwithstanding the scientific evidence, however, FAAAS has repeatedly and falsely stereotyped Autistics as likely to be violent and abusive toward family members and others. When interviewed in July 2008 for a Canwest News Service article, Karen Rodman, founder of FAAAS, asserted that Autistics often lose their temper for no reason. In a local news interview with the Cape Cod Times in February 2007, Rodman argued that Autistic students should be put into segregated schools because their presence purportedly could endanger other students. Dr. Attwood, by continuing to associate with FAAAS and by serving on its Professional Advisory Panel, you are in effect endorsing and lending your credibility to these harmful and prejudiced assertions. In this context, your discussion of clients seeking help for anger problems, who clearly are not a representative sample of the Autistic population as a whole, serves only to muddy the waters further.
Dr. Attwood: I have presented workshops for FAAAS for couples where one of the partners has a diagnosis of Asperger’s syndrome and in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship.
ASAN: In light of the clearly documented history of false stereotypes of violence and psychological harm promoted by FAAAS and other groups associated with the pseudoscientific affective deprivation concept, the Autistic Self Advocacy Network suggests that presenting couples workshops in different venues would be far more likely to result in positive and successful relationships. Dr. Attwood, we therefore reiterate our demands that you promptly disassociate yourself from Maxine Aston, FAAAS, and all similar groups and apologize to our community for the harm done by your past associations with them.
Dr. Attwood: I would like to state quite clearly that having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent. Indeed, many of the people I know with autism and Asperger’s syndrome as clients and friends are exceptionally good parents and partners. Should a separation occur between partners and a Court examine the issue of custody of children and access then in my opinion, any decisions should be made on the basis of the abilities of each parent and not simply assume that a parent with autism or Asperger’s syndrome is incapable of being a good parent.
ASAN: In addition to the possibility that an Autistic person might be assumed to be automatically incapable of being a good partner and parent, which is the most extreme danger posed by false stereotypes of family violence, these stereotypes have given rise to more subtle forms of discrimination in family law. FAAAS has explicitly urged family law courts and social workers to view Autistic partners and parents as more likely than others to be abusive. An article by Sheila Jennings Linehan on the FAAAS website, entitled Representing Cassandra in Matrimonial Law, characterizes the non-Autistic spouse as "a normal individual subjected to prolonged moral distress" who is not believed when she "accurately predicts future harm to her children." Along with Maxine Aston, the article specifically cites you, Dr. Attwood, as authority for such statements. FAAAS member Harriet Simons presents seminars for social workers in which she makes similar claims. Your continued association with FAAAS suggests that you endorse these false claims and, as such, increases the risk that Autistics and others with neurological disabilities will face discrimination within the family law system.
Dr. Attwood: The term “Cassandra Affective Deprivation Disorder” has been coined by Maxine Aston. It is not an official diagnostic category. I do know that stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression. Effective relationship counselling by a counsellor knowledgeable in the area of autism and Asperger’s syndrome can significantly improve the relationship and help alleviate the signs of depression.
ASAN: By failing to acknowledge that stress within a relationship can contribute to depression for either partner, Dr. Attwood—and by your repeated endorsements of Maxine Aston in books and interviews—you are perpetuating the false claim that being in a relationship with an Autistic partner is psychologically harmful to a non-Autistic partner. There is no scientific basis whatsoever for suggesting that depression affects only the non-Autistic partner or that it is caused by affective deprivation related to the Autistic partner's responses. Several recent research studies specifically examining the affective dimensions of empathy and alexithymia found no impairment in the affective responses of Autistic individuals. (Rogers, Dziobek, Hassenstab, Wolf, & Convit, 2007; Berthoz & Hill, 2005; Silani, Bird, Brindley, Singer, Frith, & Frith, 2008.) Rather, cognitive and linguistic differences lead to misunderstandings. Thus, a presumption that the non-Autistic partner suffers from affective deprivation is unwarranted. The Autistic Self Advocacy Network recommends that those who counsel couples with one Autistic partner should adopt a nonjudgmental approach to identifying and constructively addressing misunderstandings that have occurred.
Dr. Attwood: According to my knowledge, there is no research to suggest that people with autism and Asperger’s syndrome are likely to be violent in a relationship to any greater degree than a typical person in the general population. I do know that a significant proportion of the clients that I see in my clinical practice express to me their concern in their ability to manage their temper but we now have programs such as Cognitive Behaviour Therapy to help those with autism and Asperger’s syndrome manage feelings such as anger. Problems with anger management also occur in the ordinary population but the nature of the treatment of difficulties with anger management must include an appreciation of the different experiences and cognitive profile of someone with an Autism Spectrum Disorder.
ASAN: Research studies have established that Autistics are no more likely to commit violent acts or violent crimes than the general population (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Notwithstanding the scientific evidence, however, FAAAS has repeatedly and falsely stereotyped Autistics as likely to be violent and abusive toward family members and others. When interviewed in July 2008 for a Canwest News Service article, Karen Rodman, founder of FAAAS, asserted that Autistics often lose their temper for no reason. In a local news interview with the Cape Cod Times in February 2007, Rodman argued that Autistic students should be put into segregated schools because their presence purportedly could endanger other students. Dr. Attwood, by continuing to associate with FAAAS and by serving on its Professional Advisory Panel, you are in effect endorsing and lending your credibility to these harmful and prejudiced assertions. In this context, your discussion of clients seeking help for anger problems, who clearly are not a representative sample of the Autistic population as a whole, serves only to muddy the waters further.
Dr. Attwood: I have presented workshops for FAAAS for couples where one of the partners has a diagnosis of Asperger’s syndrome and in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship.
ASAN: In light of the clearly documented history of false stereotypes of violence and psychological harm promoted by FAAAS and other groups associated with the pseudoscientific affective deprivation concept, the Autistic Self Advocacy Network suggests that presenting couples workshops in different venues would be far more likely to result in positive and successful relationships. Dr. Attwood, we therefore reiterate our demands that you promptly disassociate yourself from Maxine Aston, FAAAS, and all similar groups and apologize to our community for the harm done by your past associations with them.
Monday, June 1, 2009
ASAN Submits Amicus Brief to the US Supreme Court
The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.
The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court's analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.
Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child's IEP.
Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.
The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child's IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.
The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court's analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.
Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child's IEP.
Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.
The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child's IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.
Subscribe to:
Posts (Atom)
