The Ashley Treatment
“The Ashley Treatment”
Assumptions About Suffering, Disability and Quality of Life
The Ashley Treatment is our most recent example of society’s relentless quest for consensus on the ethics of medical decisions cited as “treatments” made on behalf of dis-abled individuals who are unable to give consent. In effect, to improve Ashley’s “quality of life,” and alleviate the potential “suffering” from her inherent vulnerability (there were a few cited), Ashley, who is today only nine-years-old with “profound multiple impairments,” was given “grown attenuation therapy.” It was instigated and promoted by her parents where she has been given high does of estrogen to bring about permanent attenuation in her size. Ashley also underwent a hysterectomy and the removal of both her breast buds to “improve her quality of life,” so that she could remain under the care of her parents at home. By reducing her size, her parents claim, they are able to lift her.
Unquestionably, the so-called “treatment” has raised significant questions on the legal protections and rights for the dis-abled, society’s assumptions about what dis-ability means in terms of cognition and sentience, limitations on the family over “treatments” for their child, the subjectivity of definitions over “quality of life” entwined in overall assumptions about dis-ability, society’s prejudice towards dis-abled individuals, and the issues surrounding the meaning of suffering against the medicalization of dis-abilities.
This essay argues that The Ashley Treatment was a prejudicial medical “treatment” for the benefit of the parents, not for Ashley. This recent “treatment” was performed against our recent history of sterilization and involuntary institutionalization of the dis-abled.
It barreled forth despite the fact that the case possessed no urgency as Ashley is only six years of age. The health risks continue to be high, and Ashley’s outcome remains too soon to predict, both with and without so-called “treatment.”
In short, The Ashley Treatment favoured the parents and assumed that her dis-ability rendered her unable to “register” her world and what was being done to her. We have so much to learn from those who are dis-abled. We ignore their words, we are witnessing an exclusion of their involvement on American’s biggest autism charity, Autism Speaks, which will be one day be acknowledged as one of America’s biggest embarrassments. As Hollywood glitterati parade their puzzle ribbons fashionably at The Golden Globe Awards like the red AIDS ribbons once were (AIDS was life threatening as opposed to Autism, and the “puzzle” campaign is largely rejected by the very autistics they believe they are supporting), I fear they do not fully realize the prejudice and subordination they are in fact endorsing, which suggests a gross ignorance in society about dis-ability overall.
I have stated many times on this blog, using the words of other scientists, that “we do not understand autism.” Yes, we don’t understand the all the genes involved, or the possible environmental influences. We are undergoing a scientific process to either prove or disprove these speculations. What is more important to bear in mind as we fund the science, is engine that drives the process itself: us. Do we view autistic people as a diseased in need of a cure, or, do we view them as people first -- full-fledged members of our society who deserve to be treated with respect and who deserve to be treated as any other non-disabled person would want to be treated. Part of me rejects completely this notion of difference, as we are all human and in my mind, deserving of the same rights and privileges. If I were to become dis-abled, I would expect to be accommodated for my dis-ability and accepted with it. (Although I did experience a different view when I was in a wheelchair at a restaurant last week as a result of slipping after knee surgery – another blog entry entirely, but I noticed the looks and some referenced the chair as “troubling” and “horrifying”). Further, we must not practice economic prejudice for making cases based on financial burden (this is rampant for all of the vulnerable), rather, identify needs before resources. Only with such practice, and such observance of basic human dignity for others, can we begin to think out of the proverbial box. So, if we do not understand autism, if we do not fully understand what is like to BE Ashley, or Adam for that matter, we cannot assume her lack of cognition, and we cannot treat her as an UNPERSON. This applies to any person with a disability.
Therefore, in the absence of knowing truly what dis-ability is, or knowing the OTHER, as philosopher Emmanuel Levinas has argued, we must presume sentience:
“If precognitive experience, that is, human sensibility, can be characterized conceptually, then it must be described in what is most characteristic to it: a continuum of sensibility and affectivity, in other words, sentience and emotion in their interconnection.” (Stanford Encyclopedia of Philosophy quoting Levinas)
We simply do not yet understand the complexities of the human mind, and therefore we must take a humanistic and pluralistic approach. Anything less is prejudice, and I would like to use the definition of prejudice by Professor Emeritus Bernard Lewis, Near Eastern Studies, from Princeton in reference to anti-Semitism in the PBS documentary “Anti-Semitism in the 21st Century.” He states that in history, Jewish “inferiority” was accepted and tolerated – that while they were free to practice their religion, they did not enjoy equal rights, were subordinate in the Muslim world, and had to pay higher taxes than Muslims and were sometimes subjected to violence. Today, Professor Lewis defines prejudice as a different standard from which to judge anyone else in the world. Let us ask ourselves: how do we judge dis-abled persons differently?
The Ashley Treatment, similar to those historical and modern references to prejudice just cited, applies a different set of standards to the dis-abled person because of the assumptions that,
a) Ashley will not progress;
b) Ashley is not aware, therefore not sentient;
c) that “the treatment” will improve Ashley’s “quality of life,” without understanding what quality of life means for those who are dis-abled.
In the position paper, Unjustifiable Non-Therapy: A Response to Gunther, Diekema (2006) to the issue of growth attenuation for young people on the basis of disability, written by The Board of Directors of the American Association on Intellectual and Developmental Disabilities, the board states,
“The ultimate and worthy goal in this case was to ensure a higher quality of life for Ashley through the avoidance of an eventual placement outside of her family home. As individuals and as an organization, we endorse policies and actions that help families to rear their children with intellectual and other developmental disabilities at home, nurturing their capabilities as well as coping with their impairments. We applaud the efforts of many caring professionals who are engaged in providing extraordinary care to children with intensive and pervasive support needs and who continue to meet those physicians as they weigh with families the benefits versus costs of various treatment options and struggle with the complex ethical concerns that can arise. Gunther and Diekema, as well as Brosco and Fuedtner, discuss some of these issues in the context of growth-attenuation therapy and seek responses from the field to inform future practice. As the American Association on Intellectual and Developmental Disabilities, we view growth attenuation as a totally unacceptable option.” (p.2)
The paper negates the reasons why Diekema supported the parents in administering the “therapy” in question. In summary,
1) They argued against Diekema’s view that Ashley’s mental capacity “will always remain that of a young child.” The AAIDD argues that there is “abundant evidence that all children are able to learn and that the cognitive abilities of children with severe motor impairments can be grossly underestimated -- that the extant case histories of people with cerebral palsy incorrectly diagnosed as having profound mental retardation should be recognized and discussed;
2) The AAIDD argues that there is no guarantee that growth attenuation and hysterectomy will effectively delay out-of-home placement and the future development of any six-year-old child will depend on many factors – that the medical, social and programmatic needs of the adult Ashley cannot be anticipated with certainty;
3) Brosco and Feudtner noted that risks of harm from this “heavy handed” manipulation are unknown for this population, and this is an issue that begs for further amplification, citing the documented physical risks inherent in The Ashley Treatment;
4) The AAIDD question the idea that growth attenuation is in fact a type of “therapy;”
5) Lastly, The AAIDD questions the legal questions involved in the case:
“Because there was no urgency in this case, a very substantial burden of proof of benefit should have been imposed before moving forward. We see no such evidence of benefit, and despite description of a committee review process (apparently for future cases), there was no mention of including an independent legal advocate for the child or any other professional with explicit expertise in disability rights and autonomy, nor was it apparent that anyone participating in the process would be knowledgeable about the ever-expanding options for in-home supports and services. The lives of parents of children with severe disability are profoundly affected, and these individuals are asked to shoulder exceptional responsibilities for care-giving. They should be supported as they strive to meet the extraordinary needs of their children, and we as a society must acknowledge and value their efforts. We must provide them with the supports and services they need to succeed in what Brosco and Feudtner rightly refer to as their ‘most admirable of undertakings.’ However, growth attenuation of their children should not be included as an option. Under our law, parents are vested with the responsibility for making health care decisions for their minor children, but parental prerogatives are not absolute. Children have their own distinct rights and protections afforded them as individuals established in ethical principles and legal statutes. These rights should be of central relevance in the current situation, yet they did not seem to receive the attention they deserved….With a damning combination of uncertain benefits and unknown risks, growth attenuation as described by Gunther and Diekema is bad medicine, but this practice has even more troubling implications…It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding as yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here.” (p.3)
The Ashley Treatment has enormous implications for the autism community. Chelation, vitamin, oxygen, and behavioural therapy among many other “types” of speculative therapies based on insubstantial “beliefs” about autism, as opposed to accurate science, ring with the same “good intentions,” with disastrous results. To what extent, we must ask ourselves, are we imposing the same prejudices that Ashley has endured, to autistic people who cannot communicate for themselves? To what extent can we support the family who cares for an autistic person without exploiting the vulnerability of the person who does not speak? To what extent are we ignoring the scientific evidence that states clearly that all autistic children progress without treatment?
People assume that the autistic person is “suffering” because of autism. Perhaps we do not consider enough, that the source suffering comes from frustration, lack of accommodation, and being treated as less than a full-member of our society, instead of persons with the same rights to access, and the right to be protected from such “treatments” under the law. Canadian governments are supporting a type of therapy based on one randomized study and anecdotal evidence from parents, forgetting that the fraud, Bruno Bettleheim also once had a long-waiting list of clients. While parents have “the noblest intentions” (I will include myself in this reference as I am a parent who believes I am doing the best for my son without fully understanding autism -- using trial and error approaches in order to teach him), we are left with the decisions to raise our children with little guidance and on the other side, little support and protection of people with disabilities under the law. A framework of prejudice shrouds our children, influencing the way perhaps we, and others, look at them, deal with them, and teach them. What if we could practice a letting go of all our assumptions?
For the parent who believes that their child is suffering, or that the “burden” of raising a child with autism is overbearing, the debate is based on a fundamental question: what constitutes quality of life? Based on differing belief systems and assumptions about disability which, in my opinion, turn into prejudices about disabled people, the question is answered differently. If we evaluate the dis-abled as “unhealthy” and as such using the World Health Organization’s definition of Health Related Quality of Life against them, then it will be assumed that every dis-abled individual has a poor quality of life. We know that society en masse, does believe that as a truism as evidenced by overwhelming public support of The Ashley Treatment as seen on Larry King Live on January 12, 2007:
LARRY KING: The parents consented to some questions submitted in advance which I submitted to them today.
We'll show them on a screen and give you some of their answers.
I asked them, "What made you take her to the doctor the first time? Were you surprised by the diagnosis?"
They said: "Long story. Some other time."
I asked them if they consulted with family members and the answer was "Ditto."
I then asked what kind of criticism they have received from people who have learned about this through the Web site.
And they said, "We have received 3,600 plus private messages. They continue to flow at the rate of 200 a day. Ninety percent plus in support of Ashley's treatment. Today, we posted on the Web site some of the 10 percent or so that we've been able to read. Many of the support messages are from families who have direct past or present experience with disabled children. Their testimonies are a real life illustration of the substantial benefits this treatment will bring Ashley and hopefully others."
In contrast, as reported by those with disabilities:
“…people who lose functioning as a result of disease or accident typically report, despite initial disruption and feelings of loss, increasing satisfaction and proficiency with the passage of time, whether or not they receive a particular health intervention….The lives of people with disabilities are assumed to be of low quality, whatever environmental factors mediate the impact of their impairments, and their own testimony to the contrary is seen as inherently unreliable.”
– from Quality of Life and Human Difference, (Wasserman, Bickenbach and Wachbroit)
Until we can eliminate prejudice and assumption, we cannot define “quality of life,” based on health as we assume it is related to dis-ability. Simply, if we do not understand disability, and in particular, sentience in an individual who is unable to communicate, we will never understand the way they experience and see the world. The best way to get an inkling of understanding is to include the voices of the dis-abled in these dialogues. Joni Tada, a quadriplegic herself, unfortunately made an incorrect reference to autism on Larry King Live, (an autistic who flaps his/her arms is no different than a deaf person who cannot hear, therefore, is hardly "undignified" because of it) so I understand some have corrected her inaccurate understanding. However, she was included in the discussion:
JONI TADA: I think you need to remember that society, if it can find a way to cut costs by removing proper care for people with disabilities and instead place it with these surgical removal of body parts, society will do it. Given the opportunity, society will always move in the direction of convenience for the masses at the expense of people with disabilities.
We have heard the discussion about human rights here. And I have heard one expert observe that -- well, Ashley has no cognitive ability. She does not experience human dignity. Well, then let the Alzheimer's patient run around naked. Let the boy with autism flap his arms with no intervention. Let the mentally handicap eat off the floor. We need to treat people with disabilities with respect, even if they do not have the cognitive ability to understand or feel what that dignity is all about.
Steven Rosnbaum is a disability rights attorney also interviewed by Larry King with a son with the same dis-ability as Ashley:
STEVEN ROSENBAUM, DISABILITY RIGHTS ATTORNEY: You saw pictures of my son earlier flashed in the background, that's David. Where I stand is I reject Dr. Diekema's notion completely as does the disability rights movement, the ADA, Americans with Disabilities Act tells us and Alan now says United Nations treaty that it's about humanity, it's about dignity, it's about quality of life, with whatever supports or accommodations are needed. It's not about Joni -- I'm glad Joni's living the life she is but Joni's message is right, we have to look at all people regardless of the severity of disability and give them the opportunity to develop the best they can.
DR. DIEKEMA: I think what’s dignified, what is humane and what’s quality of life will depend on where you sit…
There are always people who will claim we're playing god. We -- we can't help but play god in this world and in medicine. Every time we intervene in the course of patient's care, we're playing god. When we put a child with Attention Deficit Disorder on medication we're playing god. When we choose to treat pneumonia, to a certain extent, we're playing god.
My personal opinion, as somebody who has strong religious beliefs is that god's intention is that we use the tools we have to do what we think is best for other individuals. And in this case, that meant asking ourselves whether these three things that the parents were asking for would benefit their daughter and benefit their daughter in a way that justified any potential harm.
Where is the line drawn? Why the compulsion to eliminate all “suffering” when it is so difficult to determine in that which we do not understand?
I will end with some quotes in the New York Times Letters last week regarding the article “Screen All Pregnancies for Down Syndrome, Doctor’s Say,” on January 9th, 2007:
“I was appalled at Dr. James Goldberg’s statement that to some couples, losing a “normal” pregnancy is not as problematic as the birth of a Down syndrome child. The issue at hand is not a political one, but rather the fact that all children have the potential to provide joy to their parents’ lives. While I’m sure it is distressing to discover that your baby has any kind of “abnormality.” The idea that a miscarriage of a healthy pregnancy is a better “option” than giving birth to a child with special needs reeks of ignorance.” – Lynn Ryan, White Plains, N.Y. and;
“Of course, younger women should have the option of having prenatal tests for Down syndrome and other abnormalities. But as the mother of a lively, lovely 16-year-old daughter with Down syndrome, I’d like to hope that doctors won’t just present the “down” side of having a child with special needs. Yes, there are heartaches and worries, but how is that so different from parents with typical children? Our daughter and her friends are quirky, funny, opinionated teenagers who are learning job skills and dreaming of having apartments of their own. Your article doesn’t mention the bottom line: that most women choose to terminate a pregnancy that reveals the possibility of a Down syndrome baby. I have nothing but deep compassion for women struggling to make this choice, but I’d like them to know there is a lot of joy mixed in with the challenges of raising “special” kids.” -- Jan Farrington, Forth Worth, Tex.
I’ll second that.
Combating Autism Act
Assumptions About Suffering, Disability and Quality of Life
The Ashley Treatment is our most recent example of society’s relentless quest for consensus on the ethics of medical decisions cited as “treatments” made on behalf of dis-abled individuals who are unable to give consent. In effect, to improve Ashley’s “quality of life,” and alleviate the potential “suffering” from her inherent vulnerability (there were a few cited), Ashley, who is today only nine-years-old with “profound multiple impairments,” was given “grown attenuation therapy.” It was instigated and promoted by her parents where she has been given high does of estrogen to bring about permanent attenuation in her size. Ashley also underwent a hysterectomy and the removal of both her breast buds to “improve her quality of life,” so that she could remain under the care of her parents at home. By reducing her size, her parents claim, they are able to lift her.
Unquestionably, the so-called “treatment” has raised significant questions on the legal protections and rights for the dis-abled, society’s assumptions about what dis-ability means in terms of cognition and sentience, limitations on the family over “treatments” for their child, the subjectivity of definitions over “quality of life” entwined in overall assumptions about dis-ability, society’s prejudice towards dis-abled individuals, and the issues surrounding the meaning of suffering against the medicalization of dis-abilities.
This essay argues that The Ashley Treatment was a prejudicial medical “treatment” for the benefit of the parents, not for Ashley. This recent “treatment” was performed against our recent history of sterilization and involuntary institutionalization of the dis-abled.
It barreled forth despite the fact that the case possessed no urgency as Ashley is only six years of age. The health risks continue to be high, and Ashley’s outcome remains too soon to predict, both with and without so-called “treatment.”
In short, The Ashley Treatment favoured the parents and assumed that her dis-ability rendered her unable to “register” her world and what was being done to her. We have so much to learn from those who are dis-abled. We ignore their words, we are witnessing an exclusion of their involvement on American’s biggest autism charity, Autism Speaks, which will be one day be acknowledged as one of America’s biggest embarrassments. As Hollywood glitterati parade their puzzle ribbons fashionably at The Golden Globe Awards like the red AIDS ribbons once were (AIDS was life threatening as opposed to Autism, and the “puzzle” campaign is largely rejected by the very autistics they believe they are supporting), I fear they do not fully realize the prejudice and subordination they are in fact endorsing, which suggests a gross ignorance in society about dis-ability overall.
I have stated many times on this blog, using the words of other scientists, that “we do not understand autism.” Yes, we don’t understand the all the genes involved, or the possible environmental influences. We are undergoing a scientific process to either prove or disprove these speculations. What is more important to bear in mind as we fund the science, is engine that drives the process itself: us. Do we view autistic people as a diseased in need of a cure, or, do we view them as people first -- full-fledged members of our society who deserve to be treated with respect and who deserve to be treated as any other non-disabled person would want to be treated. Part of me rejects completely this notion of difference, as we are all human and in my mind, deserving of the same rights and privileges. If I were to become dis-abled, I would expect to be accommodated for my dis-ability and accepted with it. (Although I did experience a different view when I was in a wheelchair at a restaurant last week as a result of slipping after knee surgery – another blog entry entirely, but I noticed the looks and some referenced the chair as “troubling” and “horrifying”). Further, we must not practice economic prejudice for making cases based on financial burden (this is rampant for all of the vulnerable), rather, identify needs before resources. Only with such practice, and such observance of basic human dignity for others, can we begin to think out of the proverbial box. So, if we do not understand autism, if we do not fully understand what is like to BE Ashley, or Adam for that matter, we cannot assume her lack of cognition, and we cannot treat her as an UNPERSON. This applies to any person with a disability.
Therefore, in the absence of knowing truly what dis-ability is, or knowing the OTHER, as philosopher Emmanuel Levinas has argued, we must presume sentience:
“If precognitive experience, that is, human sensibility, can be characterized conceptually, then it must be described in what is most characteristic to it: a continuum of sensibility and affectivity, in other words, sentience and emotion in their interconnection.” (Stanford Encyclopedia of Philosophy quoting Levinas)
We simply do not yet understand the complexities of the human mind, and therefore we must take a humanistic and pluralistic approach. Anything less is prejudice, and I would like to use the definition of prejudice by Professor Emeritus Bernard Lewis, Near Eastern Studies, from Princeton in reference to anti-Semitism in the PBS documentary “Anti-Semitism in the 21st Century.” He states that in history, Jewish “inferiority” was accepted and tolerated – that while they were free to practice their religion, they did not enjoy equal rights, were subordinate in the Muslim world, and had to pay higher taxes than Muslims and were sometimes subjected to violence. Today, Professor Lewis defines prejudice as a different standard from which to judge anyone else in the world. Let us ask ourselves: how do we judge dis-abled persons differently?
The Ashley Treatment, similar to those historical and modern references to prejudice just cited, applies a different set of standards to the dis-abled person because of the assumptions that,
a) Ashley will not progress;
b) Ashley is not aware, therefore not sentient;
c) that “the treatment” will improve Ashley’s “quality of life,” without understanding what quality of life means for those who are dis-abled.
In the position paper, Unjustifiable Non-Therapy: A Response to Gunther, Diekema (2006) to the issue of growth attenuation for young people on the basis of disability, written by The Board of Directors of the American Association on Intellectual and Developmental Disabilities, the board states,
“The ultimate and worthy goal in this case was to ensure a higher quality of life for Ashley through the avoidance of an eventual placement outside of her family home. As individuals and as an organization, we endorse policies and actions that help families to rear their children with intellectual and other developmental disabilities at home, nurturing their capabilities as well as coping with their impairments. We applaud the efforts of many caring professionals who are engaged in providing extraordinary care to children with intensive and pervasive support needs and who continue to meet those physicians as they weigh with families the benefits versus costs of various treatment options and struggle with the complex ethical concerns that can arise. Gunther and Diekema, as well as Brosco and Fuedtner, discuss some of these issues in the context of growth-attenuation therapy and seek responses from the field to inform future practice. As the American Association on Intellectual and Developmental Disabilities, we view growth attenuation as a totally unacceptable option.” (p.2)
The paper negates the reasons why Diekema supported the parents in administering the “therapy” in question. In summary,
1) They argued against Diekema’s view that Ashley’s mental capacity “will always remain that of a young child.” The AAIDD argues that there is “abundant evidence that all children are able to learn and that the cognitive abilities of children with severe motor impairments can be grossly underestimated -- that the extant case histories of people with cerebral palsy incorrectly diagnosed as having profound mental retardation should be recognized and discussed;
2) The AAIDD argues that there is no guarantee that growth attenuation and hysterectomy will effectively delay out-of-home placement and the future development of any six-year-old child will depend on many factors – that the medical, social and programmatic needs of the adult Ashley cannot be anticipated with certainty;
3) Brosco and Feudtner noted that risks of harm from this “heavy handed” manipulation are unknown for this population, and this is an issue that begs for further amplification, citing the documented physical risks inherent in The Ashley Treatment;
4) The AAIDD question the idea that growth attenuation is in fact a type of “therapy;”
5) Lastly, The AAIDD questions the legal questions involved in the case:
“Because there was no urgency in this case, a very substantial burden of proof of benefit should have been imposed before moving forward. We see no such evidence of benefit, and despite description of a committee review process (apparently for future cases), there was no mention of including an independent legal advocate for the child or any other professional with explicit expertise in disability rights and autonomy, nor was it apparent that anyone participating in the process would be knowledgeable about the ever-expanding options for in-home supports and services. The lives of parents of children with severe disability are profoundly affected, and these individuals are asked to shoulder exceptional responsibilities for care-giving. They should be supported as they strive to meet the extraordinary needs of their children, and we as a society must acknowledge and value their efforts. We must provide them with the supports and services they need to succeed in what Brosco and Feudtner rightly refer to as their ‘most admirable of undertakings.’ However, growth attenuation of their children should not be included as an option. Under our law, parents are vested with the responsibility for making health care decisions for their minor children, but parental prerogatives are not absolute. Children have their own distinct rights and protections afforded them as individuals established in ethical principles and legal statutes. These rights should be of central relevance in the current situation, yet they did not seem to receive the attention they deserved….With a damning combination of uncertain benefits and unknown risks, growth attenuation as described by Gunther and Diekema is bad medicine, but this practice has even more troubling implications…It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding as yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here.” (p.3)
The Ashley Treatment has enormous implications for the autism community. Chelation, vitamin, oxygen, and behavioural therapy among many other “types” of speculative therapies based on insubstantial “beliefs” about autism, as opposed to accurate science, ring with the same “good intentions,” with disastrous results. To what extent, we must ask ourselves, are we imposing the same prejudices that Ashley has endured, to autistic people who cannot communicate for themselves? To what extent can we support the family who cares for an autistic person without exploiting the vulnerability of the person who does not speak? To what extent are we ignoring the scientific evidence that states clearly that all autistic children progress without treatment?
People assume that the autistic person is “suffering” because of autism. Perhaps we do not consider enough, that the source suffering comes from frustration, lack of accommodation, and being treated as less than a full-member of our society, instead of persons with the same rights to access, and the right to be protected from such “treatments” under the law. Canadian governments are supporting a type of therapy based on one randomized study and anecdotal evidence from parents, forgetting that the fraud, Bruno Bettleheim also once had a long-waiting list of clients. While parents have “the noblest intentions” (I will include myself in this reference as I am a parent who believes I am doing the best for my son without fully understanding autism -- using trial and error approaches in order to teach him), we are left with the decisions to raise our children with little guidance and on the other side, little support and protection of people with disabilities under the law. A framework of prejudice shrouds our children, influencing the way perhaps we, and others, look at them, deal with them, and teach them. What if we could practice a letting go of all our assumptions?
For the parent who believes that their child is suffering, or that the “burden” of raising a child with autism is overbearing, the debate is based on a fundamental question: what constitutes quality of life? Based on differing belief systems and assumptions about disability which, in my opinion, turn into prejudices about disabled people, the question is answered differently. If we evaluate the dis-abled as “unhealthy” and as such using the World Health Organization’s definition of Health Related Quality of Life against them, then it will be assumed that every dis-abled individual has a poor quality of life. We know that society en masse, does believe that as a truism as evidenced by overwhelming public support of The Ashley Treatment as seen on Larry King Live on January 12, 2007:
LARRY KING: The parents consented to some questions submitted in advance which I submitted to them today.
We'll show them on a screen and give you some of their answers.
I asked them, "What made you take her to the doctor the first time? Were you surprised by the diagnosis?"
They said: "Long story. Some other time."
I asked them if they consulted with family members and the answer was "Ditto."
I then asked what kind of criticism they have received from people who have learned about this through the Web site.
And they said, "We have received 3,600 plus private messages. They continue to flow at the rate of 200 a day. Ninety percent plus in support of Ashley's treatment. Today, we posted on the Web site some of the 10 percent or so that we've been able to read. Many of the support messages are from families who have direct past or present experience with disabled children. Their testimonies are a real life illustration of the substantial benefits this treatment will bring Ashley and hopefully others."
In contrast, as reported by those with disabilities:
“…people who lose functioning as a result of disease or accident typically report, despite initial disruption and feelings of loss, increasing satisfaction and proficiency with the passage of time, whether or not they receive a particular health intervention….The lives of people with disabilities are assumed to be of low quality, whatever environmental factors mediate the impact of their impairments, and their own testimony to the contrary is seen as inherently unreliable.”
– from Quality of Life and Human Difference, (Wasserman, Bickenbach and Wachbroit)
Until we can eliminate prejudice and assumption, we cannot define “quality of life,” based on health as we assume it is related to dis-ability. Simply, if we do not understand disability, and in particular, sentience in an individual who is unable to communicate, we will never understand the way they experience and see the world. The best way to get an inkling of understanding is to include the voices of the dis-abled in these dialogues. Joni Tada, a quadriplegic herself, unfortunately made an incorrect reference to autism on Larry King Live, (an autistic who flaps his/her arms is no different than a deaf person who cannot hear, therefore, is hardly "undignified" because of it) so I understand some have corrected her inaccurate understanding. However, she was included in the discussion:
JONI TADA: I think you need to remember that society, if it can find a way to cut costs by removing proper care for people with disabilities and instead place it with these surgical removal of body parts, society will do it. Given the opportunity, society will always move in the direction of convenience for the masses at the expense of people with disabilities.
We have heard the discussion about human rights here. And I have heard one expert observe that -- well, Ashley has no cognitive ability. She does not experience human dignity. Well, then let the Alzheimer's patient run around naked. Let the boy with autism flap his arms with no intervention. Let the mentally handicap eat off the floor. We need to treat people with disabilities with respect, even if they do not have the cognitive ability to understand or feel what that dignity is all about.
Steven Rosnbaum is a disability rights attorney also interviewed by Larry King with a son with the same dis-ability as Ashley:
STEVEN ROSENBAUM, DISABILITY RIGHTS ATTORNEY: You saw pictures of my son earlier flashed in the background, that's David. Where I stand is I reject Dr. Diekema's notion completely as does the disability rights movement, the ADA, Americans with Disabilities Act tells us and Alan now says United Nations treaty that it's about humanity, it's about dignity, it's about quality of life, with whatever supports or accommodations are needed. It's not about Joni -- I'm glad Joni's living the life she is but Joni's message is right, we have to look at all people regardless of the severity of disability and give them the opportunity to develop the best they can.
DR. DIEKEMA: I think what’s dignified, what is humane and what’s quality of life will depend on where you sit…
There are always people who will claim we're playing god. We -- we can't help but play god in this world and in medicine. Every time we intervene in the course of patient's care, we're playing god. When we put a child with Attention Deficit Disorder on medication we're playing god. When we choose to treat pneumonia, to a certain extent, we're playing god.
My personal opinion, as somebody who has strong religious beliefs is that god's intention is that we use the tools we have to do what we think is best for other individuals. And in this case, that meant asking ourselves whether these three things that the parents were asking for would benefit their daughter and benefit their daughter in a way that justified any potential harm.
Where is the line drawn? Why the compulsion to eliminate all “suffering” when it is so difficult to determine in that which we do not understand?
I will end with some quotes in the New York Times Letters last week regarding the article “Screen All Pregnancies for Down Syndrome, Doctor’s Say,” on January 9th, 2007:
“I was appalled at Dr. James Goldberg’s statement that to some couples, losing a “normal” pregnancy is not as problematic as the birth of a Down syndrome child. The issue at hand is not a political one, but rather the fact that all children have the potential to provide joy to their parents’ lives. While I’m sure it is distressing to discover that your baby has any kind of “abnormality.” The idea that a miscarriage of a healthy pregnancy is a better “option” than giving birth to a child with special needs reeks of ignorance.” – Lynn Ryan, White Plains, N.Y. and;
“Of course, younger women should have the option of having prenatal tests for Down syndrome and other abnormalities. But as the mother of a lively, lovely 16-year-old daughter with Down syndrome, I’d like to hope that doctors won’t just present the “down” side of having a child with special needs. Yes, there are heartaches and worries, but how is that so different from parents with typical children? Our daughter and her friends are quirky, funny, opinionated teenagers who are learning job skills and dreaming of having apartments of their own. Your article doesn’t mention the bottom line: that most women choose to terminate a pregnancy that reveals the possibility of a Down syndrome baby. I have nothing but deep compassion for women struggling to make this choice, but I’d like them to know there is a lot of joy mixed in with the challenges of raising “special” kids.” -- Jan Farrington, Forth Worth, Tex.
I’ll second that.
Combating Autism Act
7 Comments:
"People assume that the autistic person is 'suffering' because of autism. Perhaps we do not consider enough, that the source suffering comes from frustration, lack of accommodation, and being treated as less than a full-member of our society, instead of persons with the same rights to access, and the right to be protected from such 'treatments' under the law."
I feel sad that I am probably one of the very few psychologists I know of who wholeheartedly believes that to be the case.
But then... I'm one of the very few psychologists I know of who has experienced it.
Thank you for saying it.
"The Ashley Treatment has enormous implications for the autism community. Chelation, vitamin, oxygen, and behavioural therapy among many other “types” of speculative therapies based on insubstantial “beliefs” about autism, as opposed to accurate science, ring with the same “good intentions,” with disastrous results"
Lumping behavioral therapy in with chelation, "the Ashley Treatment" etc. is pure nonsense. Unfortunately, such nonsense can be harmful to the extent that you are successful in persuading parents of newly diagnosed autistic children to refrain from ABA as a health and education intervention for autistic children. You do a great disservice to autistic children with such unfounded characterizations.
Congrats, Estee, on a surgical (yes, I use that word) deconstruction of the "Pillow Angel" atrocity. What you say couldn't be more on the money. Haven't we learned after all of these years not to do these things? I want to be sick when the parents talk about how much they love their daughter.
Ralph James Savarese, Ph.D
Hi to Ralph (above)!
The following quote is direct from Ashley’s parents’ blog and I’ve explored this issue further on the Planet of the Blind because it's been bugging me...
“The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”
Is it just me? Does anyone else out there find this sentence, coming from “a member of the Board of Directors for the Institute for Ethics and Emerging Technologies” particularly offensive? Unprofessional perhaps? George Dvorsky considers a full-grown and fertile woman with the mind of a baby grotesque? I’d like to know: just what is grotesque about this? Would a woman who requires the level of care Ashley requires be less “grotesque” if she had the mind of a two year old? Or an eight year old? Twenty? Forty-five? See where I’m going with this? At what age, or at what IQ, are people with disabilities who require the level of care that Ashley does no longer considered grotesque in George Dvorsky’s opinion? I’d like to know where he draws the line.
Hi Estee
You said
Chelation, vitamin, oxygen, and behavioural therapy among many other “types” of speculative therapies based on insubstantial “beliefs” about autism, as opposed to accurate science, ring with the same “good intentions,” with disastrous results.
I am sorry by this generalization from you because it is untrue and offensive, at least to me , internationally speaking, as a mom. It is certain that some parents do not follow strict/scientific rules in terms of testing for diagnosis in respected labs. But for many of us, that do this in excelent labs to diagnose a very VERY high number of concomitant problems to the Autism diagnosis, your statements are untrue and unfair.
My son´s doctors -mainstreamed and very careful about ethics and long terms effects- agree with me in my son´s treatment. I am not based in beliefs-but in clinical facts.
It is true that disastrous results can be present but it all depends what is done, under what advice with what goal , based on what and under what scientific premises, testing and diagnosis. And every family is different in the election of all this ( from the behavioral-education or clinical point of view).
To what extent can we support the family who cares for an autistic person without exploiting the vulnerability of the person who does not speak?
Again, the generalization you are doing for people that do not follow your path is for me, offensive. I am not exploiting my son´s vulnerability, I am detecting and treating medical conditions that are ethically needed to treat.
BTW, I disagree profoundly with the Ashley treatment and my personal election was not ABA for my son (several reasons long to explain in the case of ABA).
To what extent are we ignoring the scientific evidence that states clearly that all autistic children progress without treatment?
I, at least, am not ignoring. But you can not generalize that every child with autism will progress without treatment because you can not do general statements of this kind without the personal knowledge of the child´s health status. What about metabolic genetically linked problems? what about nutritional vitamin deficiencies? What about organic dysfunctions? What about GERD and digestive enzymes deficiencies? What about esential elements deficiencies? And so on.
What is it known about why an autistic child progress without treatment? For me this is part of what we do not know about autism and what development brings at an individual level to the austistic person.
How many things can be present that remain today undetected, undiagnosed and untreated- not behaviorally related but clinically related- and are very much linked to certain concept of mainstreamed medicine?
I simply do not agree with the overall treatment that mainstreamed medicine is offering for autism. For one side, the use of organoleptics and "behavior control drugs"/ABA as an extreme option for children and for the other side, "treatments" like the Ashley treatment- that I disagree with strongly. However, I also acknowledge the possibility of the use of certain tools that in certain cases and depending on the individual can be helpful. As in everything for me the equilibrium must be the goal in the analysis and the decisions at every situation in particular- without generalizations.
"Again, the generalization you are doing for people that do not follow your path is for me, offensive. I am not exploiting my son´s vulnerability, I am detecting and treating medical conditions that are ethically needed to treat.
BTW, I disagree profoundly with the Ashley treatment and my personal election was not ABA for my son (several reasons long to explain in the case of ABA)."
Maria,
It seems your in part agreement and somewhat defensive?? I am baffled that you think you must follow my path -- I'm aware that there are many. Yet, we must talk about prejudice in treating people-- what might be our value judgements about suffering, aberrant behaviour -- all require rigorous scrutiny now.
I think at the end of the day, many paths and decisions and quandaries about those decision are shared by us all. Do we medicate the concomitant issues that autistics may have? I am not arguing against that. Is it auitsm? I may argue against that! Is it because an autistic individual may experience stress in certain situations, I will acknowledge that. You hit on an interesting point though -- many families need to broach issues differently. The point is, how far?
The Ashley Treatment did set a very dangerous precedent for those who cannot speak for themselves. While support must be rallied for the parents, there need to be laws and protections for disabled individuals.
As far as your claims (and many others) for vitamin and nutritional "treatment," for autism, that remains unproven. "As in everything for me the equilibrium must be the goal in the analysis and the decisions at every situation in particular- without generalizations."
It is important to see the whole amidst the chaos, that is the arguments for and against. While we need the detail, there is a lot of it that is a smokey veil. We can all want "balance," but someone else's assessment of balance, suffering, quality of life, autism, can be much different than another's. The bigger question is, is this prejudice, and where do we draw the line.
Hi Estee
I want to clarify you that , if you read my post I have never said that vitamin and nutritional approach was a treatment for autism. It was the treatment of vitamin and nutritional defficiencies concomitant to a diagnosis of Autism. and This is a totally different world.
When you say
Is it auitsm? I may argue against that! Is it because an autistic individual may experience stress in certain situations, I will acknowledge that. You hit on an interesting point though -- many families need to broach issues differently. The point is, how far?
I agree with you.
As a scientist, my idea when my son was diagnosed was Science first; Proven approaches; Serious doctors. BUT my son presented a lot of concomitant medical problems that we need to search for with foreign help and with a lot of familiar research in terms of the answer for the question What can we do next?.
If you ask me if the concomitant medical problems are RELATED to his autism I can tell you: I do not know for sure, now. I have my hypothesis but to prove them I would need to know what polymorphism to search to be imbalanced to be related to transcription/metabolism/biochemistry associable to the clinical data I have and these polymorphisms should be proven to be related to Autism. But What I do think is that concomitant medical problesm affect autism and autism affects concomitant medical problems , FOR NOW.
The suffering my son has had was related to this concomitant medical problems, and not assignable to the autism for me.
I do think that the point is how far?
For me, it depends of many many personal familiar positions including the goal. But surely there is the ethic question about the safety and well being of the autistic person of all ages and in this aspect I agree with you in the need of being careful and doing informed and responsible decisions. I am very concerned about this aspect. I can only talk by myself and my family. Our goal is not "the cure" and what we are doing is not "a treatment of autism". Our goal is the best health possible for my autistic son and all the treatments ( the most safest and clinically based and scientifically backuped we could find with the team of the most serious doctors we can find and with the continuous research on safety efficiency and control of health status-rational) are of concomitant medical problems to autism.
I do think that in this sense you misunderstood me when you say
As far as your claims (and many others) for vitamin and nutritional "treatment," for autism, that remains unproven.
because I have never presented such a claim.
What I can tell is that, when several of the concomitant medical problems were treated, several of the symptomatology used to diagnose autism under the DSMIV disappeared or improved enormously ( eye contact, stimming, hand clapping, many more) concomitant with changes in biochemical parameters considered safe and healthier. BUT I have never said that these particular approaches were treatment of Autism because they are not with the actual knowledge about autism in terms of scientific proof. Even more, concomitant to these biochemical changes, certain abilities considered present in autism such as hyperlexia were more and more evident.
I have the same problems than you have when I read "whatever" as a treatment of autism. No, for me.
For example, Gluten free diet is the treatment of celiac disease-gluten intolerance, not of autism. Casein/soy free diet is the treatment of milk allergy-casein intolerance. Chelation is the treatment of heavy metals poisoning- correctly detected. Immune support must be the treatment of immune imbalances, for example secondary immunodefficiencies, detected properly in ASD and so on.
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