Compassion

I envision a group. A gay friend of mine came up with this idea today -- it may sound "granola head" :) but it was an interesting idea: He said that he was asked, by his Reform Synagogue, to lead a group of parents who couldn't cope with their child's homosexuality. Parents were even embarassed to be seen in the group as they did not wish to be stigmatized. My friend had to listen patiently to all of the bias and prejudicial comments of these fearful parents in order to build a bridge to acceptance. My friend received this comment: "If my son was successful as you..." Someone else always had the tougher plight. Someone else's homosexual child, was always better off than another's.

So, he brought other gay people in (my friend is conversative, not the stereotype a gay person -- or at least the stereotypes these parents had). He is successful. Some of these others were like a "spectrum of gay people" -- successful business people, lawyers, judges, women who looked like men, pretty women who didn't "look gay," to unemployed people with nose rings and blue hair. These people attended the subsequent meetings and also listened patiently to fearful parents, angry parents, prejudical parents who wanted to cure their children of their homosexuality. Many of these people were also subject to behaviour modification training to look "normal," while other parents sought to cure their child of homosexuality altogether.

There was a rule to this group, however: There was to be no talk of causes or cures. This was thought to be a barrier to true acceptance.

Everyone was allowed to express their thoughts and feelings, and at the end of the exercise, the parents didn't see anything wrong with homosexuality -- that it was just another kind of "normal." Siblings born of these parents later attended (the gay children were not part of the group in order that the parents be allowed to express themselves freely). It was discovered that in the years of the parent's "mourning," and obsessing over their sick or abnormal gay child, the other siblings felt neglected.

While I do express many views based on basic human rights in this blog, I do feel that groups can be brought together in autism, and I really liked this example my friend told me about today. Autistics must lead these groups. While some are not able to lead them, there are others who can and who are likely willing. Autistic people came to speak at the Joy of Autism: Redefining Ability and Quality of Life event in October -- and we discovered how Susan Senator sends her son to an ABA school because "they love him there," and of course if people accept autism, that is really all that matters. We learned that Elijah does stand-up comedy. We learned from Jim Sinclair that his need to move his hand up and down was not a stim or inappropriate behaviour, but a way to find and feel his hand so he could direct it, or that his wheelchair represents for him not confinement, but liberation -- a piece of equipment that allows him to move around without falling down. We learned from Phil Schwarz about his Aspergers and then of his son's autism; we learned from Michael Moon that what a non verbal autistic child truly does change over time, and from Michelle Dawson that autistics deserve better than speculation, assumption and "lousy science." Martine Stonehouse talked about her journey with autism and read her poetry and Brian Henson also talked about discrimination in front of his photographs.

I know that when we feel a certain way about something, of feel blamed and confronted, it is easy to become defensive. But what if parents had a safe place to talk about autism, with autistic people? I know there are some groups that do this, but I am not sure if people go in those meetings with the same rules (no talk of therapies, cures, remedies or causation) and goals of acceptance. People try so hard to understand this little quirk and that, that maybe we are all missing the forest for the trees -- there is a difference between fascination with autism and genuine understanding. At the end of the day, true acceptance doesn't really require any knowledge of autism at all. But that may be too big of a jump in thinking for today.

The Tougher Hill

"To hate is to refuse to accept another person as a human being, to diminish him, to limit your own horizon by narrowing his, to look at him - and also at yourself - not as a subject of pride but as an object of disdain and of fear..."
- Excerpt from The Oslo Declaration


This picture was taken last year when Henry hosted Elie Wiesel in Toronto. We are seen here at a book signing at Indigo Books in Toronto. I didn't "advertise" this photo for all sorts of personal reasons, however, I feel it is time to discuss the tougher hills people have climbed in their lives, and how that relates to autism.

Autism is referred to all to often as a war, a fight, a combat. The war is waged largely between ABA parents and those who do not solely advocate for this one type of therapy. There are large factions of us in between, who want to acknowledge and receive support for an education and accomodation that befits our unique child and the ABA "fight" doesn't do this. There are many who understand that if there is a tougher hill to climb than putting the onus on children to change, it is this hill of prejudice that effects our children.

In my opinion, Elie Wiesel has climbed it. With a recognition that prejudice abounds, and may always, people like Elie don't give up the quest for peace, justice and the dignity for all.

Mr. Harold Doherty (Autism Reality NB) and some others want to create divides, where there should be none. Your toughest ABA advocates who I know personally, have called me to find out about other approaches (you know who you are), because all they want to do is to help and accomodate their children: the ultimate acknowledgement that their are other ways to broach autism education other than ABA.

Mr. Doherty calls autistic people who can communicate "not autistic." He creates divides between levels of functioning to justify services and money -- as if the "neurodiverse" movement is doing an injustice. Yet, all autistic people require accomodations throughout their lifetime. There should be no prejudice towards autistic people in terms of the assistance that they require, no matter what level of functioning. People like Mr. Doherty like to put the blame on someone for not getting ABA therapy funded as a sole "treatment" for autism. So it will be people like me, like Michelle Dawson, like any one who wants something better and let's face it, a lot more complicated.

I am advocating for more services, not less. I am advocating for the basic human right of the disabled person to be regarded as a full member of society. I am advocating for a new standard of ethics to be applied as it would be for any of us, towards disabled people. I am advocating that autistic people should be on the Ministry of Education's reference committee on autism, and any other committee or policy that concerns autism. I am advocating for parents to receive support and compassion with the challenges they face in raising speical needs children, so that they will also experience the joy of their child. I am advocating for bias and harmful language to be removed from autistic organizations and scientific research, for the purpose of creating hype for money, and which end up perpetuating prejudice and continued segregation. I am advocating for the parent's right to participate in educational and service desicions for their children while also drawing the ethical line of how far those decisions can go. I am advocating for inclusion of all disabled members in society at all levels -- which may be the hardest objective of all -- as prejudice starts young and runs deep. Yes, inclusion can be cruel if a disabled member is not fully accepted and accomodated. But inclusion should be the ultimate goal. Real inclusion. I extend my hand to you, Mr. Doherty, and any others who wish to work together for the sake of our children, to find that middle ground that will help them be the best autistic people they can be. If autism "awareness" was built on the backs of people like you (and not), then we have to ask ourselves now, with the advent of the disability rights movement, with the voices of autistic people yearning to be heard which can benefit the way our children are viewed by society, where we are going? Between your reality and mine, there lies a place where we can achieve our goals.

I don't think the onus should be on our children to just "fit in," or "become normal," and ABA has functioned on this premise of making children "indistinguishable from their peers," with questionable methods. I believe that the onus is on the rest of us to discover all people -- their intrinisic value, beauty and worth.

It may take a very long time, for prejudice is the toughest hill to climb.

Values and Reason

What's on my mind: As usual, beauty (as in human spirit), justice, dissention and this recent reponse to The Ashley Treatment by Peter Singer, ethicist from Princeton University:

What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying....In any case, the “best interest” principle is the right test to use, and there is no reason that other parents of children with intellectual disabilities as profound as Ashley’s should not have access to similar treatments, if they will also be in the interest of their children. If there is a slippery slope here, the much more widespread use of drugs in “problem” children who are diagnosed as having attention deficit hyperactivity disorder poses a far greater risk than attenuating growth in a small number of profoundly disabled children." (NY Times Op. Ed, Peter Singer, January 26, 2007).

Imposing assumptions on the state of mind of others is a value judgment (one with bias). Assumptions that another person does not understand what is happening to them is prejudice. Valuing one type of life more than another is also prejudice. Remember: prejudice is a different set of standards which we apply to one set of people over another. Throughout history, "behavioural phenotypes," have given rise to bias about people who display different behaviours:

"A behaviour phenotype is a characteristic pattern of motor, cognitive, linguistic and social abnormalities which is consistently associated with a biological disorder. In some cases, the behavioural phenotype may constitute a psychiatric disorder, in others, behaviours which are not usually regarded as symptoms of psychiatric disorders may occur." (Flint and Yule, 1994)

Throughout the Journal of Applied Behavioral Analysis is an abundance of biased language: aberrant, stereotypy, and more. If we scrutinize every pattern of behaviour and classify it, we run the risk of creating aberrance, where there is none.

But I thank God for one thing: the freedom of us all to discuss all of these issues, the drive of parents to accept nothing but the best for their children -- there was a day when society really didn't accept any disabled person, when parents had little hope. Today, parents will not accept that. They expect their children to attend schools, receive an education, and obtain accomodations. Despite virulent disagreements over the ethics of "treatment" versus accomodations for autistic children, I still have faith that we're moving forward, with one caveat: always keep your eyes open...

Here is some dialogue from the movie Sophie Scholl: The Last Days. She and her brother were the leaders of the White Rose movement which was a resistance movement in Nazi Germany. The setting is in the interrogator's office discussing her ideals against his Nazi ones:


Sophie: “The other children asked where they were going. ‘They’re going to heaven,’ said the nurse. So the children got on the truck singing. You think I wasn’t raised right, because I feel pity for them?”

Interrogator: “These are unworthy lives. You trained to be a nurse. You saw people who were mentally ill.”

Sophie: “Yes. That’s why I know. No one, regardless of circumstances can pass divine judgement. No one knows what goes on in the minds of the mentally ill. No one knows how much wisdom can come from suffering. Every life is precious.” [bold mine]

Perhaps we need to revisit history, our older concepts of ethics to find a new shared ethics that befit the unprecedented ethical issues of our time. What are our shared values that unite us in humanity and responsibility for others. Perhaps we need not only go back to history, but our songs, our stories, our art -- that which truly makes us human.

At the basis of the Ashley argument, we cannot assume that Ashley is "suffering." This is a big problem with disabiltiy itself -- that because a person is disabled, the rest of society views that as a terrible state -- that the disabled person in question must be suffering. Even if, what does it mean to suffer? Isn't suffering part of existence? We can learn by listening to the disabled communtiy and their response on this. And, it is our obligation to do so.

I aruged in my last post, that in the absence of truly knowing or understanding, we must presume sentience. A recent visit to a Montessori school, and I reviewed Maria Montessori's mantra: "Every child is born intelligent but learns at a different pace."





Click here to listen to "The Riddle"(the video ain't great, but it's better than having the song on autoplay everytime you click into this blog, which is what was happening.)

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

January Has Gone to The...

The beginning of 2007 has been the most delirious of new year beginnings. I believed I mentioned a lovely family holiday -- all twenty of our family down south -- and Adam enjoying his cousins. As soon as we returned, I underwent knee surgery the following day. Three days later, we acquired our awaited puppy, Kiki, when the unusual warm and dry streets of Toronto, because of the knee surgery of course, turned to ice. So I fell, irritated my knee and was down two more days. Then, I acquired the stomach flu this past week, and yesterday, Adam underwent the same. This is why I will endearly refer to January 2007, the RIDICULOUS month.

Yet, I have the perfect antedote for any ailment: get a puppy. There are no excuses, no possibility of sitting too long. Kiki arrivied in her eighth week. A goldendoodle, she has a great temperment and is easily trainable. We are training her to be a "companion dog," for Adam. She arrived teething, nipping and of course, jumping all over us. Thanks to Henry, who read all the puppy training books there may be on the market (he made up for all the Penelope Leach books he didn't read), he was ready. Kiki doesn't have a chance to chew on our furniture, jump up on the couch, or jump on our visitors. Henry took hours training her, "behaviourally" of course. Sit, off, lie down, wait....all are part of her everyday repertoire now because of him -- and we've only had her for two weeks.

"This is operant conditioning, you know," he says to me with a wry smile, Kiki sitting obediently at his feet, looking up at him. "She's a good dog," he says with a look of dumb puppy love. "I have to say," he sighs, "it is pretty gross."

"What is?"

"To think of teaching a person this way."




I shrug. He knows my feelings so there is not much more I can say. I am too tired, my knee up on the couch with two pillows. The obedience trainer has enlightened me to the dog's world -- how the Alpha Dog let's the pack know who's boss, and how to teach a dog who's Alpha in the home, and what is expected. The means of training a dog is not unfamiliar to what they already experience within their pack. When the trainer comes and I express my trepidation of being too harsh, I watch a video of "puppy training" on the couch. The dogs are shown in their natural environment. A firm but gentle nudge to show whose boss is enough to have a good puppy.

Anyway, it's all about the dog, the knee and the stomach flu this month. I look forward to smoother sailing ahead.

She Speaks For Herself

When I was curating the exhibition this year, I considered doing a type of virtual reality room, with autistic people designing sensory types of areas so the "language" of autism could be experienced by those who do "not speak" autistic. I still think it could be an interesting project, with contributions like the one below.

When I saw this video recently, I thought it was brilliantly executed -- bridging that ever imaginary divide between what we believe autism to be and what is. In My Language is not only intelligent, it is beautiful to watch.

In My Language

Disability By Design?

As I sit an recuperate from my knee, using the latest in technological advances, I imagine all of us I-Pod, Blackberry people as the new Borg, hooked up from head to toe. For those who are autistic or disabled, the phenomenon may be no different. Ladies and gentleman, let me introduce ESP: The Emotional-Social Prostheses for autistic people.



The advent of virtual reality, computer devices and software, has made a world difference for many people with autism and many other developmental disabilities. From online high schools, where individuals are not judged for how they appear, and who can excel from such an “environment,” from the very software programs that my own son Adam uses to exemplify that he understands what is being asked of him -- that he can answer more in that forum than he can from a “real” person in the moment -- our environments are definitely changing.

When I first heard of the ESP device, I scoffed. I considered that my intuition might take on numerous physiological responses to a situation, not just the reading of a face. Be it the proverbial “gut reaction,” or “second sense,” I can’t imagine that ESP will be able to replace those senses while “face reading,” let alone mind-reading.

In our home, we have used the face-reading programs that Simon Baron-Cohen has already developed at Cambridge, and while I’m convinced anyone can study faces like dictionaries and rote learning can be a segue to real understanding, I am unconvinced that autistic people have difficulty understanding emotions and human interactions. In exchange for this popular view, I am more convinced that autistic people understand emotions quite fine. While unable, perhaps, to express an “appropriate” or expected “social” response, or "real-time" response, it seems apparent that autistics can register and understand human interaction, if simply different in responding or conveying the processing of that information in a typical way. What perhaps might be expected of an autistic person is a more deliberate way of teaching meaning for the expected social response (if the autistic adult chooses this). In return, society can do its part to understand autism so that this is a true compromise, and autistic people are not judged because of an atypical social response. This would make for an authentic empathy lesson.



I am thinking the ESP device might be an excellent tool for me to use, as long as it comes in a variety of cool colours, and can fit into my evening bag. I mean, I can decode faces just fine, thank you, but some assistance with mind-reading would be welcome!! Imagine being able to “decode” Mary Sue’s “I’m so happy to see you schmoogy schmoogy kiss” to its real meaning (oh God, there’s Estee and I have to say hello, let’s make this quick!). Seriously, I’m not sure if we all want to know what many of our friends and associates are really thinking, do we?

The ESP device, being developed by Rana el Kalibouby and Rosalind Picard, might be affixed to a baseball cap of a pair of sunglasses, writes, Jennifer Schuessler in the New York Times Magazine (December 10, 2006): “It consists of a small camera mounted on a cap of glasses that monitors a conversations partner’s facial expressions and feeds the data into a hand-held computer. Software tracks the movement of facial features and classifies them using a coding system developed by the psychologist Paul Ekman, which is then correlated with a second taxonomy of emotional states created by the Cambridge autism researcher (and Ali G cousin) Simon Baron-Cohen. Almost instantaneously, the computer crunches each raised eyebrow and pucker of the lips, giving a whispered verdict about how the person is feeling….



El Kaliouby’s system, which is currently being tested on teenagers with high-functioning autism and Asperger’s syndrome, has an accuracy rate of 85 per cent when reading the emotional state of trained actors, though it drops to just 65 per cent for ordinary people. While the technology has a way to go before it is ready for the market, el Kaliouby is already thinking of ways it could be using in helping everyone ‘move up the spectrum’ defined by severe autism at the one end and off-the-chart emotional intelligence at the other. Cocktail party bores and dinner-table droners beware: el Kaliouby envisions a ‘Bore-o-Meter’ that might, say, cause your cellphone to vibrate when software senses that your conversation partner’s eyes are a glazing over….”

Anything that creates this bridge to understanding or getting any kind of edge in this world, is welcome in my home. I am grateful for the many technological advances from which Adam can benefit. I’m also very interested in technological advances aimed at assisting Adam, but with the understanding of autism, or at least the quest to a greater understanding of autism, that backs it. Until I see ESP in action, and based on the computer program Adam has already used, ESP may be DOA. But I’ll be fair. I’ll wait to see it in action.

ESP may also lead to greater ideas, initiated by autistic people, if they are truly to be workable and meaningful accomodations that benefit autistic people as opposed to non autistic people. I am all for greater access for all dis-abled individuals. I am very interested in the “Wheelchair Car,” otherwise named the Kenguru,

which looks something like the Smartcar where a wheel chair can roll right in and start driving. It offers the long-awaited accessibility for many disabled people in wheelchairs. At $12,500 and environment friendly (it’s electric), the government should think about subsidizing at least part of the cost.

In the meantime, I think we are doing just fine without ESP:



















History has repeatedly demonstrated that empires seldom seem to retain sufficient cultural self-awareness to prevent them from overreaching and overgrasping. They have neglected to recognize that the true power of a successful culture resides in its example. To take it successfully, a society must be self-aware." (Jane Jacobs, Dark Age Ahead, p. 176).

Nature Has It "Own Sweet Reasons"

Atop The Gorge

For all the yearnings, all the hope,
The brook still moves the flow
From up atop the rocky cliff
To down the gorge below...

The roar of water as it falls,
Is heard above the mist,
And this just goes to show how much
That nature does exist.

The trees grow out of rocks and cracks,
With tiny bits of earth,
And seeds then blow atop the gorge,
To give some new trees birth.

The cycle goes through many years,
Through many storms and seasons,
But nature does not tell us why--
It has its own sweet reasons.

-Brian Henson is an autistic member of The Autism Acceptance Project

NIH Steering Committee Petition

This has been prepared by a group of individuals and put online for your signature:

Statement
The past decade has witnessed an accelerated tempo of NIH funded research into the causes and character of autism. However, without exception, NIH funded research has approached autism from a perspective of pathology: Autism is envisioned as a disease to be cured and autistic citizens are characterized solely by their deficits and impairments.

Consider a contrasting and highly successful model for scientific inquiry:

"Twenty years ago, most scientists associated old age with decline and disability… Today, the concept of aging has been transformed… An important root of this shift in thinking can be traced to 1984, when the MacArthur Foundation brought together a group of scientists from widely disparate fields - physicians, psychologists, sociologists, cell biologists, and others - to mount an intensive, ten-year study of aging. This group, the MacArthur Network on Successful Aging, took a simple but radical approach to its research. Rather than focus on the problems of disease and disability associated with aging, which was the accepted approach of gerontological research at the time, the network chose to study people who age well."1

We believe that the scientific study of autism needs to be radically reoriented, just as researchers in the MacArthur Network on Successful Aging radically reoriented the scientific study of aging. Rather than continuing to conceptualize autism as a disease, we believe that NIH must begin to conceptualize autism in the same human rights perspective as it conceptualizes sexual orientation (which up to 30 years ago was, as autism is now, considered a severe psychiatric disorder). Rather than continuing to support studies aimed only at investigating autistic deficits, we believe that NIH must begin to support research that investigates autistics' unique strengths. And rather than pathologizing the biological and behavioral differences between autistic and non-autistic citizens (many of which are no greater than those between males and females), we believe that NIH must begin to embrace the diversity that autistic citizens embody.

We admonish NIH to meet these goal for future autism research:

to understand autism as a neurological difference that results in atypical modes of perceiving, thinking, and acting;
to identify empirically the strengths and competencies that autistic individuals possess; and
to provide the scientific answer to how autistic individuals can develop and live successfully – as autistic individuals.
There can be little doubt that such a re-conceptualization will result in autistics leading more fulfilling and respected lives and non-autistics living more harmoniously among autistics.

Please sign by clicking here.

Celebrating Autistic Children Every Day

For all the parents who work so hard to provide the best opportunities for their children, who love them, who have undergone confusion and fear, who choose to live with joy and pride, who want a world of tolerance and acceptance where our children can be educated and contribute to society, and whose children may need further accomodations in adulthood, I propose we talk honestly while protecting our children's best interests and self-esteem.

"Joy doesn't come without struggle," I wrote when I chose The Joy of Autism. Joy is a choice, and the joy my child continues to bring me is the engine behind everything. These pictures reflect our journey with autism every day. Adam trying to kick a soccer ball after repeating over and over again (and thank goodness for Kevin of Sportball who convinced us to stay when I was about to leave the first day when all the kids were staring at him. He encouraged me, said Adam was doing great and even if he had to stay and watch on the sidelines that would be a good thing. Well, it was, and Adam began to learn soccer), his love of books and reading, his joy of watching the sand drip through his fingers, his innate curiousity, his fourth birthday celebration last April, his joy of dance at his cousin's Batmitzvah. His smile, his soul...is everthing. Thank God for him. I do not share the sentiments in The Autism Every Day video as its director Thierry suggests. I had my moments, early on with autism when I didn't understand it as much as I do today, when I was angry and confused, but I never thought of taking Adam's life because of autism. Adam is my life, my world, my everything -- my autism every day.

Even if you have a bad day, there are a multiude of others that make us content and happy. What are your joyful moments? For all the worry and work you do, name those stupendous, maybe subtle moments that elate you, for the achievements of our children are momentous occasions!! What price do we, and our children, pay by not celebrating them?

What Are They Thinking?

Autism EveryDay and Autism Speaks -- Stop Speaking for Autistics Now!


Let me go on the record right here and right now: I protest this screening of the Autism Every Day video at the 2007 Sundance Film Festival. While I believe it is a parent's natural reaction to experience a period of mourning, and that some parents find it harder to cope with difference and disability than others, I do not agree to stage this film as the real representation of autism as it is harmful to autistic people, does not include their voice, and as such, does not fairly represent them.

I hereby stand to protect my son from the harm that this video is causing by creating a devastating message about autism that then gets reported by the media. I believe Christschool has produced a video that we should all watch. I also urge all of you to add your comments to me by email or herein that I will gather to send to Sundance.


Autism Speaks



Our Autism Reality

So I am recovering from knee surgery. I had a terrible reaction to the anaesthetic which has now thankfully let up.

The day before yesterday (surgery day), our flight was delayed for two hours. We left my in-laws Miami condo at nine in the morning to return to Toronto a mere eight hours later -- what should have been a four hour trip all 'round. Adam was fanatastic. We walked around the airport, we watched the airplanes take off, we played games and ate Adam's favourite: potato chips. On the plane, Adam initiated a game with me. He beamed and asked "Make a face!" So I crossed my eyes and stuck out my tongue. He found it hilarious (and thank goodness no one saw me because I was acting ridiculous!). He kept asking me "make a face...make a face!" I kept making them. So I told him, "Your turn. Make a face!" He tentatively stuck out his tongue a little way out. I was elated. My son had made his first face intended for my laughter! He was laughing with me.

I decided on this trip to show Adam how to draw objects. I have so far, taught him to draw a happy face, a snowman and a house, using a triangle, square and rectangle for a door, reading somewhere sometime ago, that using shapes and putting them together to make a cohesive whole might make more sense for Adam. Sure enough, Adam has begun to imitate such drawings. However, I decided in the airport to ask him to draw objects I have not taught him how to draw: a boat, a tree and a butterfly. He could draw them. Sure, his mast was a triangle that didn't quite meet up with the bottom of the boat, but I don't care! My son's world is expanding!!

Adam spent his nearly two week vacation with all of his cousins and his half-siblings. He played with all of them, and they got to experience his affection, his happiness. Adam really does make everyone around him smile. These wonderful moments, along with the same tough days(arguably)that we experience with all growing, little children, is the autism we experience EVERYDAY.

Let Sundance See The Dignification of Autistic People and the Videos produced By Autistic People

Other Autism Reality Shows can be found on PosAutive. I strongly suggest Sundance take a look at the hundreds of videos that try so hard to achieve the respect and dignity for autistics that children and adults deserve.

Let Sundance See the Dignification of Autism in the Media:

This recent article on an autistic 5th grader, or

and this article that I recently appeared in January 2007 issue of The Village Post.

And this homespun autism awareness video among many others:

Autism Awareness video 2


Or the recent wonderful book by Ralph Savarese

The "real autism" is the face of life itself -- with ups and downs, sorrows and triumphs. Autistic people are not tragedies. The real tragedy is that there are people who continue to represent them as such.

Disease: The New "Normal?"

I have been in Miami this past week -- Adam enjoying the sun and beach. He listens, expresses himself just fine. I watch in this atmosphere with a sense of relief at how relaxed we all are. It is a far cry from those early first months of initial diagnosis.

Yet, there is something else here amongst the crowd of retired snow birds: it is a little pain here, a little pill there. Or perhaps, it is a story I hear, among many, a grandchild with some kind of diagnosis -- from autism to ADHD and many other childhood "disorders." I know there is a great deal of contention over this issue: is autism just better diagnosis (or more liberal diagnosis in order to get some kind of subsidized service), or is it a combination of environmental and genetic factors?

While we continue to turn to science to find the answers to our hovering questions, I have to ask, where do studies in social evolution come into play in our discussions in how we influence science? From bias, to flat-out prejudice, to financial opportunity, how much do WE influence the understanding about not only autism, but about what it means to be human? For those of you who read my blog, you know my view is that we influence everything that has to do with our views of autism and the direction of scientific research.

I have a healthy skepticism about our medical system: I do with the information what I want and I don't trust doctors very much. You go in with a complaint and expect to be medicated, or at least offered a prescription. So it was interesting for me to read this article in the New York Times this morning: What's Making Us Sick Is An Epidemic of Diagnosis:

"Americans are living longer than ever, yet more of us are told we are sick. How can this be? One reason is that we devote more resources to medical care than any other country. Some of this investment is productive, curing disease and alleviating suffering. But it also leads to more diagnosis, a trend that has become an epidemic.

This epidemic is a threat to your health. It has two distinct sources. One is the medicalization of everyday life. Most of us experience physical or emotional sensations we don't like, and in the past, this was considered part of life. Increasingly, however, such sensations are considered symptoms of disease. Everyday experiences like insomnia, sadness, twitchy legs, and impaired sex drive now become diagnosis: sleep disorder, depression, restless leg syndrome, and sexual dysfunction.

Perhaps most worrisome is the medicalization of childhood. If children cough after exercising, they have asthma; if they have trouble reading, they are dyslexic; if they are unhappy, they are depressed; and if they alternate between unhappiness and liveliness, they have bipolar disorder. While these diagnoses may benefit the few with severe symptoms, one has to wonder about the effect on the many whose symptoms are mild, interrmittent or transient.

The other source is the drive to find disease early....

Most of us assume that all this additional diagnosis can only be beneficial. And some of it is. But at the extreme, the logic of early detection is absurd. If more than half of us are sick, what does it mean to be normal? Many more of us harbour "pre-disease" than will ever get disease, and all of us are "at risk." The medicalization of everyday life is no less problematic. Exactly what are we doing to our children when 40 per cent of summer campers are on one or more chronic prescription medications?

No one should take the process of making people into patients lightly. There are real drawbacks. Simply labeling people as diseased can make them feel anxious and vulnerable -- particularly children.

But the real problem with the epidemic of diagnosis is that it leads to an epidemic of treatments. Not all treatments have important benefits, but almost all can have harms. Sometimes the harms are known, but often the harms of new therapies take years to emerge -- after many have been exposed. For the severely ill, these harms generally pale relative to the potential benefits. But for those experiencing mild symptoms, the harms become much more relevant. And for the many labeled as having predisease, or as being "at risk" but destined to remain healthy, treatment can only cause harm.

The epidemic of diagnosis has many causes. More diagnoses mean more money for drug manufacturers, hospitals, physicians and disease advocacy groups. Researchers, and even the disease-based organization of the National Institutes of Health, secure their stature (and financing) by promoting the detection of "their" disease. Medico-legal concerns also drive the epidemic. While failing to make a diagnosis can result in lawsuits, there are no corresponding penalties for overdiagnosis. Thus, the path of least resistance for clinicians is to diagnose liberally -- even when we wonder if doing so really helps our patients." (Essay by H. Gilbert Welch, Lisa Schwartz and Steven Woloshin, NYT, Health & Fitness, January 2, 2007, p. D5).

We know we have an epidemic of autism diagnosis. I am wondering if, with the help of others, we might calculate the income of this "autism economy" to see just how much others are profitting from pathologizing our children. I look back and consider the autism diagnosis, how it made me look at every one of Adam's behaviours as being the result of autism, and today, I laugh. Adam is a healty 4 1/2 year old who is still not fully verbal, but otherwise a normal kid. When he gets upset, it is because maybe he wants something, maybe he's naturally upset or sad, maybe he's learning to cope with all of those big emotions in his tiny body that we learn to manage (or not) with maturity, or maybe he's just plain tired and has reached his limit. Surely, autism has its set of challenges for both a parent and a child, and each of us as parents, are dealing with a slightly different set of challenges for each of our children. Surely, we musn't ignore what it takes to accomodate our children to enable them to communicate, learn to socialize, or whatever needs to be addressed. The bulk of the responsibility to accomodate, seems to lie with parents and educators, for I have not seen or experienced any medical professional yet who has done anything to de-stigmatize or accomodate our kids. I can teach Adam to communicate using a computer. He can show me how much he knows (and I am continually floored at how much he knows and understands when he using educational programs) on the computer. He can learn how to use a program, a new mouse, faster than many an adult. As his parent, I can figure out how he learns with fill-in-the-blank sentences. I can "backward chain" a sentence until he says it fully by himself. It is a process of learning that I can figure out with him. It takes my time, my patience, and my utter faith in his intelligence and ability.

Two nights ago, Adam said on his own "I love you mommy," (more like I wa you mummy). Quickly after, he went back to splashing water in the tub with his throaty little bird sounds. Among the many other sentences he works so hard to utter independently, it goes to show that the teaching, the exposure to many words and sentences, the reading, the computer programs the "text-rich environment" that we provide for him, may be working.

I am about to go into knee surgery on Thursday. Apparently I "have arthritis" in my knee that I've suffered four dance and ski injuries. I've gained some weight because I haven't been running this year (I've lost some since those news clips you might have seen). For years, I've been avoiding surgery to correct my patella that initally popped out for the first time dancing at age fourteen. On the eve of my 42nd birthday, coming up in March, I decided that the constant swelling and limitation in my physical activities warranted surgery. My first surgery. My first general anaesthesia. My first "letting-go" to a medical professional. May he be good to me!

Sometimes we need to let go, but not without a fight when it comes to decisions about health and our own well-being. We need to resist all attempts to limit life, to categorize it, and ultimately in autism, to limit the many opportunities that all our children rightfully deserve.