1 sur 9 12/08/2009 10:39 DPI/NGO Briefing Autism and Human Rights: Understanding and Safeguarding the Rights of People with Autism 2 April 2009 Summary Conference website Planning Committee Meetings Maria-Luisa Chavez, Chief of the NGO Cluster in the Department of Public Information, noted that the Briefing was being organized in observance of World Autism Awareness Day, a day designated by the United Nations General Assembly in order to increase greater global awareness and understanding of Autism. She explained that the General Assembly had put in place a Resolution, not only to promote awareness and understanding, but to recall the Convention on the Rights of the Child and the Convention on the Rights of Person with Disabilities, both of which ensure dignity, promote self reliance and facilitate the child s active participation in the community, as well as the full enjoyment of all human rights and fundamental freedoms on an equal basis with other children (A/RES/62/139). She stressed that this briefing was meant to move beyond raising awareness of autism, and to focus this year, on the right of persons with autism to lead full and meaningful lives. Only to be filled out by NGOs associated with DPI Accreditation Form 2008 UN seeks $1.5 millio to tackle rising malnutrition among Central African children 11 August Malnutriti is on the rise among children in the Central Paulo Barrozo, Professor of Law at Harvard University, focused his presentation on ensuring that the human rights of those with mental disabilities are recognized under the UN Convention on Disabilities which he described as the next frontier in the struggle to achieve human rights for all. The development of human rights, at both the national and international level, has gone through various periods ranging from emphasis on civil rights, socio-economic rights and at other times to political rights. However, all these stages fall under the umbrella of challenges to human rights. Professor Barrozo suggested that over time, societies all over the world had overcome barriers that had originally excluded groups of people, be it for religion, race or other differences, and denied them their human rights. The development of human rights, he stated, worked in parallel stages: the creation of new rights
2 sur 9 12/08/2009 10:39 and the extension of existing rights to different groups of people. The second of these stages had produced moments of great creativity in the form of social movements such as the civil rights movement in the United States during which those who have been discriminated against had pushed the frontier of human rights forward by standing up for their rights. The Convention on the Rights of Persons with Disabilities corresponded, with this stage of the extension of rights, in this case to those with disabilities. Professor Barrozo insisted that the very language of the Convention on the Rights of Persons with Disabilities implied that the coming into force of the Convention was a moment of extension to people whose rights already existed, not the creation of new rights. He suggested that once the important issues were contemplated such as, what it meant for disabled persons to have their autonomy, independence, and human dignity respected and protected and to be fully included in all aspects of social life as the neuro-diverse, then people the world over would also learn to appreciate new aspects of human rights and new dimensions of respect and consideration towards others. These considerations, Mr. Barrozo stated, would be the biggest challenge in the history of the development of human rights, due to the peculiarity of the autistic population and the specific ways in which their rights had to be defended. He concluded his presentation by reiterating his conviction that achieving human rights for those with mental disabilities would be the next frontier for the development of human rights. He emphasized that it was not only important for those with autism, but human kind everywhere, as the decency of our societies was at stake. He stressed that all people should take up the challenge to push forward the frontier of human rights by taking account of the perspective of those among us who faced the life-long challenge of a mental disability. Evelynn Friedel, President of Autism Europe, began her presentation by introducing her work with Autism Europe, an international organization in Europe with approximately 80 member associations in 30 European countries, which worked through national organizations and European institutions of the European Union. Autism Europe was an active participant in the European Disability Forum, and in the drafting of the UN Convention on Persons with Disabilities. She put forward the view that in the vast majority of countries disabled persons did not benefit fully from their rights and because of the complexity of their needs those with autism were a particularly excluded population. These needs required that those with autism also had a right to compensation and an effectiveness of their rights, through such positive measures as mainstreaming. She noted that it was one thing to legislate rights and another to make them effective. Ms. Friedel insisted that the ultimate goal in ensuring the effectiveness of the rights of those with autism was the definition of an individual life-plan for each child affected by the disability.
3 sur 9 12/08/2009 10:39 Each child needed a plan that would be adaptive, flexible, evaluative, and life-long, and that took account of the needs and desires of the affected person. She put forward the view that a rights-based approach needed to be taken which would address each of the fundamental rights to which an autistic person was entitled including, the right to early diagnosis and intervention, the right to receive care and treatment, which was a life-long requirement, and the right to enjoy appropriate disease prevention and control programs, and appropriate treatment. Addressing the right to education, she stressed this too was a life-long process. She further suggested that autistic children should only have to attend special schools if inclusion in mainstream schools was not possible. Special schools for autistic children, she maintained, should work to ensure a smooth transition from special to mainstream schools and decisions on education, should also be taken with the complete consensus of the parents. Apart from the academic skills that persons with autism needed to be taught, they also needed what she described as adapted education, which prepared children with autism for independent life as adults. In looking at the importance of preparing autistic children for their future, Ms. Friedel cited another critical right that needed to be addressed as children grew into adulthood, the right of autistic persons to work. She suggested that potential employers needed to comply with this by adjusting the working conditions to the needs of this community. She also observed that adults with autism also needed access to private housing and a private life; or for those who had to remain at home, that they lived at home as independently as possible. She underscored the need for competent and trained personnel to care for and work with those with autism throughout their lives to achieve these goals. Ms. Friedel noted that while positive measures to improve the lives of those with autism may have an initial cost it was such an important investment for society since it became less of an expense once these individuals were fully integrated into society. She also expressed the view that for the majority of countries she felt that putting in place a number of these measures that would safeguard the rights of persons with autism was possible. She stressed that for States putting these programmes in place was not a choice but a duty. Ms. Friedel concluded her presentation by stating that it was the responsibility of society to reaffirm the dignity and worth of every person with autism, and that effective tools must be put to concrete use to end injustice, discrimination, and the violation of the rights of people with autism. Dr. Hatem El-Shanti, Director of the Medical Centre at the Shafallah Centre, focused his presentation on the successes and challenges his Centre in Qatar faced in dealing with autism. Dr. El-Shanti began by emphasizing that all efforts to address autism, whether scientific or human-rights based, contributed to the work to alter the public perception of
4 sur 9 12/08/2009 10:39 developmental disabilities. As a pediatrician and geneticist, he said, he understood the suffering experienced by children with disabilities and their families. Autism, he emphasized, was a lifelong disorder, which had a huge impact on families and communities and posed many challenges. Understanding this, the Shafallah Centre in Qatar had developed a two-pronged strategy in order to respond effectively. Primarily, the Centre s goal was to increase awareness among the public and healthcare providers to recognize the red flags of autism. This would allow for early diagnosis and intervention; patients could be referred to specialists who would be able to diagnose the disorder as early as possible and recommend treatment to ensure the best outcome for the child. The Centre s second line of response was to gain more knowledge of the genetic and environmental factors which may contribute to the disorder in populations. This type of research would also open the possibility of identifying better therapeutic options to allow children with autism to have the best possible treatment and prospects. Dr. El-Shanti spoke of the Shafallah Centre s partnership with the organization, Autism Speaks, which started over a year ago. The Centre, he noted, sought to use the experiences of Autism Speaks to devise a strategy to address the problem of autism in Qatar. The partnership had developed into a comprehensive research program that works on the identification of genetic factors contributing to autism. He emphasized the importance of genetic factors in looking at autism in the Middle East, because he explained, populations in this region had unique traits that put greater emphasis on the possibility that autism in this region was the result of genetic factors due to the prevalence of marriage between blood relatives. He stressed that greater efforts were being made to ensure early diagnosis of autism, by teaching health-care providers to increase their skills in identifying the disorder using state-of-the-art diagnostic tools available and through various educational programs. It was important to note, he stated, that the diagnostic tools had been translated into Arabic to make them more effective and accessible to health care providers in the country. The Centre was also in the process of setting up a registry of those with autism in the country so that services could reach the children most in need. Additionally, through the partnership with Autism Speaks, the Shafallah Centre was able to launch its own community based awareness campaigns. The partnership also assisted the Centre in advancing its plans to establish community service based projects to help adults with autism and other developmental disabilities to ensure that they found job placements to allow them to lead more productive lives. Lee Grossman, President and CEO of the Autism Society of America and a parent of an autistic child focused his presentation on how to frame the argument of the need to protect the human rights of those with autism. He began by stressing that first and foremost, those in the autism
5 sur 9 12/08/2009 10:39 community had to be understood. The autism community is defined, he explained, as all those on the autism spectrum. He stressed that his take-away message for the audience was when dealing with a person with autism, to look well beyond the disorder, and to appreciate that person for who he or she was, and assist them to develop their wonderful gifts. He said it was our common responsibility to develop the services, support and interventions needed to draw from those with autism the most remarkable aspects of their character. He described the families of those with autism as both members of the autism community and the silent victims of autism, whose heroic efforts were typically under-supported. Other members of the autism community who needed to be supported in their efforts to assist those with autism included professionals such as occupational therapists, pediatricians and psychologists, who served the community against incredible odds. He noted that autism prevalence was currently high and growing in both the US and around the world. Autism, he suggested, was an equal-opportunist condition, in that it was prevalent in all parts of the world, at all levels of society, regardless of class differences or socio-economic -background. Mr. Grossman put forward the view that autism was a complex disorder that needed unique research and therapeutic interventions at an early stage and a multi-faceted and multi-agency approach to dealing with it. Most importantly, Mr. Grossman stressed that autism was treatable. Mr. Grossman said though the cause of the disorder was unknown, his organization strongly believed that the rise in autism was directly related to environmental factors. He based this claim on the fact that though it was likely that people were genetically predisposed to the disorder, the dramatic rise in cases, as in so many other chronic conditions, was caused by environmental factors. Mr. Grossman noted that autism should be considered a human rights issue as people with autism and their families were systematically discriminated against. Many of those affected were not receiving adequate services, and where services were available they were under-funded. He stressed that it was important to frame the human rights argument in terms of increasing awareness and educating individuals, systems, and governments world-wide as to what could be done today to help the autistic population. He believed that there was enough information on autism to better the lives of those with the disorder, but that the question was whether there was a willingness to do something concrete to help. His organization had come up with nine measures for assessing whether efforts to improve the lives of those with autism were successful. Among those measures was the issue of school inclusion, friendship or social connections and most importantly, subjective wellbeing. Mr. Grossman stressed that his hope was that these standards to measure the quality of life of persons with autism would be important to bringing about system changes. He said though these changes would vary
6 sur 9 12/08/2009 10:39 given the culture of each community around the world it was imperative for all people with disabilities to have this opportunity and the only means he saw of achieving the goal of improved quality of life for persons with autism was through bringing about system change. Lack of adequate resources, he argued, was not an obstacle to ensuring the constitutional rights of people with autism because countries were certainly investing in programs to address the rights of those with disabilities. The problem, he identified, was a lack of coordination. He called for countries to come together in a coordinated manner to address human rights and autism. He concluded by declaring that it was only in addressing the question of system change that we would be able to provide hope for improving the lives of people touched by autism and make autism an accepted part of the human condition. Patt Mathews, Executive Director of the Irish Society of Autism, began his presentation recounting the year 1969 when his son was first diagnosed with autism. He said since then both he and his wife had been campaigning for the rights of people with autism. He explained that this had also occurred at a time when very little was known about the disorder-- a complex disability, with life-changing effects on both the sufferer and their family. He stressed that it was important to recognize that that autism was a life-long developmental disability, which affected children irrespective of race, colour, gender or socio-economic status. He shared with the audience the latest statistics that show autism on the rise globally, From 1 in 2,000 children in the 1980s to 1 in 100 children today. He quoted a recent study by the Autism Research Centre at Cambridge University, which found that 1 in 58 children would have some form of Autism-Spectrum Disorder. He predicted that if the rise in autism was not reversed, and additionally, if the statistic of 1 in 100 children globally being at risk of autism was taken into account, then 1% or 670 million people worldwide would suffer from some form of autism, in addition to the millions of family members and communities that would also be affected. Mr. Mathews agreed with Mr. Grossman s statement that doing nothing is not an option and insisted that reversing the incidence of autism relied on the opportunity for early diagnosis, appropriate early intervention, autism-specific education, and opportunities for life-long care and support. These opportunities, he noted, were being denied to children worldwide, and there would be no hope for future generations without an appropriate response from the global community. He pointed out that the recent signing of the European Charter of Rights by 331 members of the European Parliament [9 May, 2009] was a historic day because their Charter states that, people with autism should have the same rights as all EU citizens, and that these rights should be enhanced and put into legislation so that people with autism could be ensured equal protection under the law. However, no legislation had been passed in any member country that had signed the
7 sur 9 12/08/2009 10:39 charter. He emphasized his view that there was a moral obligation to provide people with autism with a life of dignity and respect, free from abuse and neglect, with a right to live independently and have access to education, housing, and care and treatment. Mr. Mathews raised the issue that many children with autism around the world, particularly in Asia, Africa and South America, were being denied autism-specific services. He went on to stress that without access to the appropriate services needed to ensure their development and care, autistic children would have no quality of life. These problems, he argued, could not be solved by organizations of parents or friends, but had to be addressed by the United Nations, the World Health Organization and governments working in partnership towards achieving a common goal of ensuring that the rights of all those on the autism spectrum were respected. He emphasized that there was a moral obligation to act now, to confront the growing problem of autism. Ms. Matthews said a global strategy to combat autism was needed. The UN,, had already created World Autism Awareness Day, however, now awareness programs with adequate funding and legislation were needed, for further action to be taken. Additionally, he stressed the need for global research for identifying the cause of autism, since finding the cause could lead to prevention and a reduction in the numbers of those affected by the disorder. Stephen Shore, Assistant Professor at Adelphi University, gave a brief history of his own life, and experiences growing up with autism. He said he was diagnosed as autistic at 18 months, or as he described it this was the time when the autism bomb struck. He explained that his parents were advised to have him institutionalized, but fortunately for him, his parents were very proactive and decided to utilize a home based early intervention programme to assist him. He stated that it was only because of his parents advocacy, at a time when there was little information about autism that he was able to become the person he is today. At that time, his parents provided what they thought their child needed, utilizing music, movement, sensory integration, narration and imitation. He stressed this did not mean that all children on the autism spectrum should use this method of treatment. He noted there was now a vast wealth of approaches and treatment was rooted in providing for the needs of children based on the best matched-practices of the needs of each specific child. Dr Shore said his parents developed a relationship with him, by imitating his behaviour, which in turn made him become more aware of them in his environment. This method he noted was critical to allowing him, and other autistic children, to come out of their isolation. By the age of 4 he was able to speak, and by age 5 he was accepted to the school that had initially rejected him and recommended his institutionalization. However, by grade-school he was a social and academic catastrophe. His experience led him to
8 sur 9 12/08/2009 10:39 the conviction that teachers and school children needed to be more aware of autism and understanding people with differences. Dr. Shore said he was fortunate that the teachers and other professionals provided him with what he needed, at a time when none of the knowledge we have today existed, but he felt strongly that receiving this type of attention should no longer be a privilege but a right for those with autism. With current awareness, research and programs, autism no longer needed to be the bomb dropped on families, which it was once considered. Dr. Shore argued that the diagnostic procedure needed to be reframed from a deficit model which emphasized what autistic children were unable to do, to a model that looked at the strengths of their autistic characteristics and what it allowed them to achieve. He suggested for example, instead of emphasizing what are now described as the restricted interests of children with autism those interests should instead be seen as focused interests, which would allow the autistic child the opportunity to concentrate on his/her strengths as opposed to his/her challenges. Using this approach, he suggested, would allow autistic children the chance to lead a full and productive life. The major challenge posed by autism he asserted, was the eventual need of autistic children to be able to find fulfilling and productive employment as adults. This, he insisted, was a right to which they should be entitled, so that they could play their part in society. He posed the question as to what will be done now that so many autistic children were aging into adulthood. How were they to be taught to move away from having others advocating for them to advocating for themselves? He suggested that the solution to this lay with encouraging those with autism to lead valuable and industrious lives, and giving them the tools to become successful. He concluded by emphasizing that success was a personal thing and if the DPI/NGO Briefing was able to create more awareness about the situation of autism today, then that in and of itself was a success. The question and answer session addressed both broad and specific questions related to the challenges autism posed within today s society. A questioner asked what was being done to r diagnose autism in street children in Brazil. Professor Barrozo replied that in Brazil the federal government had special programs in place to address this issue. Specifically in the south of the country, there was a system in place to identify children with autism and direct them to care. However, he stressed that while provisions for reaching these children were available at all levels, they were not working in an effective manner and much progress still needed to be made. Another question addressed the need for free autism programs in the United States. Mr. Grossman answered that efforts were being made to make this a reality, including a bill that was before the United States Senate, which was the most comprehensive legislation yet addressing the issue of autism. The problem lack of free autism programs
9 sur 9 12/08/2009 10:39 in the US stemmed from the need for system change, since the current system was inadequate to serve the needs of the autistic population. A question was raised as to whether there was an education component in the curriculum for school age children to make them more aware of autism and its effects on affected colleagues. Dr. Shore affirmed that if schools did have an education component for children, it would certainly be beneficial because this would ensure greater awareness and appreciation for people with disabilities. As a follow up to this question, another member of the audience stated that a major problem was that teachers were not educated on autism and posed the question what was being done to encourage teacher training? Mr. Shore agreed that this was highly problematic issue, but he stated that there were many teachers being trained to work with children with autism. He referred to his current professorship at Adelphi University, where he taught future educators, through techniques and activities, to understand what dealing with and experiencing autism is all about. Another question addressed the pervasiveness of autism among boys rather than girls. Mr. Shore asserted that the 4:1 ratio, which implied that autism was four times more common in boys rather than girls, may be a myth The reason this myth persisted, he suggested, could well be because autism in girls was often diagnosed later than it is in boys. One questioner referring to a New York Times article about the prevalence of autism among refugee Somali communities in the United States, stated that the increased prevalence of autism in the Somali refugee community was worrisome for both immigration and human rights and that if the government should be doing more than just taking a census of the community. Gail Bindley-Taylor Sainte, the moderator of the discussion responded that according to the article, the census was being conducted in order to know the extent of the problem in the Somali communities in Minnesota, since other communities facing similar problems throughout the United States also did not know the degree of prevalence of autism because they did not know the number of those affected. She said that the articles appearance in the New York Times was hopefully an indicator that further investigation would take place. Lee Grossman added that his organization had been watching this situation closely, but no one was quite sure of what was happening. However, he noted that there were a number of organizations and programs in place dealing with these Somali communities, and he was pretty sure that the investigation would continue. This Briefing was attended by over 170 representatives of NGOs, United Nations and Permanent Mission staff as well as interns from various Departments and NGOs.