On World Autism Awareness Day Remember the Invisible and Forgotten Ones

Two days from now, on April 2, the world will recognize for the second time World Autism Awareness Day. WAAD is the result of an outstanding initiative led by Autism Speaks and the State of Qatar.

As the father of a 13 year old boy with autistic disorder, assessed with profound developmental delays I thank both Qatar and Autism Speaks for this monumental step forward in facing the challenges of autism spectrum disorders around the globe.

Everyone with an autism spectrum disorder (Pervasive Developmental Disorder) by definition has serious deficits or challenges to face. For each such person their challenges are undoubtedly large and complex realities of their daily lives. There are different degrees or severity of autism disorders though and this is implicitly recognized in the DSM which in the definition section of Asperger's Disorder expressly excludes persons with clinically significant delays in language, cognitive development or age appropriate self-help skills. (Some of the very intelliglent, highly articulate leaders of the "autism" advocacy movements are in fact persons with Asperger's Disorder such as Ari Ne'eman and Alex Plank).

The mainstream media CBC, CNN, New Yorker Magazine for example tend to interview and present persons with Asperger's Disorder and higher functioning autistic disorder to the world as being representative of persons with autism. Very, very few features about autism focus on the invisible persons with severe forms of autism, the forgotten ones who live as adults in institutional care or very controlled community group homes. [The exception to this rule is the Vancouver Sun which provided the most comprehensive presentation of persons with autism from all points of the autism spectrum with its excellent Faces of Autism series. The Vancouver Sun, Pete McMartin, columnist, and Glenn Baglo, photographer, deserve full credit for daring to portray realities of life for persons from across the full spectrum of autism disorders and their families.]

The invisible autistic persons live in institutional settings because of the severity of their autism disorders. Some are violent towards themselves or others. Some lack the skills to function at all in the world without assistance. Simply closing such places is not an answer even if it makes the public feel better. For many, without institutional care they would have no where to live, no means of survival. For me such severely autistic persons are not invisible or forgotten. Unlike some of the dilettante, mainstream health "journalists" I have visited institutional facilities providing lifelong residential care and treatment to severely autistic persons. My son could well end up residing in such a facility after I am dead.

On World Autism Awareness Day I will think of all persons with autism disorders including my friends with Asperger's Disorder. And I will think of and remember the invisible and largely forgotten persons with severe autistic disorder. I will not ignore or forget them. I respectfully ask you to do the same.

It is my hope that World Autism Awareness Day continues in perpetuity and that long after I am dead people will be thinking of all persons with autism disorders, including the severely autistic, including my son, Conor Doherty.

Thank you for considering my request.

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On World Autism Awareness Day Have Hope But Do Not Sugar Coat Autism Realities

History is being made today; the first World Autism Awareness Day as declared by the United Nations General Assembly. Qatar led the international effort to being about this result and that effort should not be overlooked or diminished. In North America and Europe there is a movement which has tried to romanticize and glorify "autism"and which actively attempts to suppress discussion of the harsher realities faced by many autistic people. Governments, particularly the Canadian government of Prime Minister Stephen Harper, have been quick to point to the views of people in this movement as an indication of lack of agreement on what should be done to help persons with autism thus justifying the Harper's government refusal to take serious steps to address Canada's autism crisis.

Almost everything about autism is controversial in the extreme. Debates roar on over the causes of autism. Even Applied Behavior Analysis, ABA, a well documented, well researched autism intervention is criticized relentlessly, often by people who have had no experience with ABA. Some of these people know nothing more about ABA beyond the extremist rhetoric of anti-ABA activisits who themselves generally have no experience and little real knowledge of ABA. The ABA critics ignore the millions of parents, thousands of autism experts, hundreds of studies and numerous professional reviews by responsible expert agencies which have endorsed ABA for decades as the educational and health intervention of choice for autism, an intervention documented by years of study as effective at making real gains in intellect, behavior, communication and socialization skills for autistic children

Even the mention of the existence of severely autistic or low functioning autistic persons offends some people. Within the world of autism there is an ideological group sometimes self referenced as Neurodiversity, which perverts logic and common sense and asserts that Autism Disorder is not in fact a disorder, that somehow it is a good thing that some children develop the limited communication, social and intellectual and behavioral characteristics that lead to diagnoses of Autism Disorder. Mention the reality, the FACT, that some autistic people hurt themselves very seriously by self aggression or that they lack understanding of the world such that they require 24/7 supervision and care, in some cases for the duration of their lives and the Neurodiversity ideologues react with sarcasm, hostility and anger.

While they are quick to search history and speculate that every known genius in history was an "Aspie" or an "Autie" the Neurodiversity ideologues do not want parents of children diagnosed with actual Autism Disorder with profound developmental delays to talk about their children's existence and challenges; challenges not shared by the ND cult. Mere mention of 14-year-old Kristi Jansen the severely autistic young lady featured in one of the Vancouver Sun's excellent Faces of Autism series is enough to set off anger and hostility on autism discussion forums like Autism Speaks now dominated by Neurodiversity advocates.

Accepting autism should not mean the kind of autism acceptance which views autism as a joy. Autism is a disorder. The people diagnosed with Autism Disorder who have limited communication and social skills, serious behavioral challenges and in some cases intellectual deficits, should not be ignored in shame and denial. Their realities too must be accepted. There is no "joy" in knowing that your child, diagnosed with Autism Disorder and profound developmental delays, will never know a life of independence, that he will be cared for by strangers long after you are dead.

My son Conor, diagnosed 10 years ago with PDD-NOS, subsequently changed to Autism Disorder with profound developmental delays. lifts my spirits every day and makes my experience of life richer and more meaningful. Although I do not find joy in my son's Autism Disorder I take great joy and find great happiness in him. I accept him and the fact that he has an Autism Disorder but instead of surrendering to the seductive logic of the Neurodiversity movement, instead of embracing his autism as a "good thing" I try to help him overcome the deficits which mark his Autism Disorder. That to me is true autism awareness and true autism acceptance. That to me is being a responsible parent.

Today I will be aware of Autism and I will discuss it with many people in my daily life. I will be of service to my son and other persons with autism by speaking the truth about Autism Disorder. I will tell people there is hope for improvement by intensive early ABA intervention and the incredible explosion of autism research, the Autism Knowledge Revolution know taking place, but I will not sugar coat the realities of autism disorders to make others .... or me .... feel better.

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World Autism Awareness Day, April 2, Designated by UN General Assembly

The Gulf Times reports that the UN General Assembly Third Committee has approved a draft resolution, which was introduced by Qatar and co-sponsored by 50 member states, on the designation of the World Autism Awareness Day to be observed annually on April 2 beginning in 2008.

Qatar Leads World Autism Awareness Day Initiative

Map: U.S. Central Intelligence Agency.

As reported in the Gulf Times, the move to have the UN General Assembly declare April 2 as World Autism Awareness Day is being led by Qatar. The UN Human Rights Committee has already adopted the resolution which was co-sponsored by 50 countries and is expected to to be adopted by the 192-nation UN General Assembly early this month.

Qatar’s UN ambassador Nassir al-Nasser said at the UN Office in New York on Tuesday that HH the Emir Sheikh Hamad bin Khalifa al-Thani, and his wife HH Sheikha Mozah Nasser al-Misnad, took the initiative because of the high rate of autism in children in all regions of the world.

“HH Sheikha Mozah has made tremendous efforts to change the way the Qatari society views people with disability, and breaking the barrier of shame, of which this group and their families have been suffering,” he stated.

The draft resolution designates every April 2 as World Autism Awareness Day and asks all countries, UN bodies, international organisations and non-governmental groups to help raise autism awareness. The resolution describes autism as “a lifelong developmental disability that manifests itself during the first three years of life and results from a neurological disorder that affects the functioning of the brain.”

Autism Speaks has been actively supportive of the resolution and is sponsoring an epidemiological study to measure the scale of the global autism epidemic, working with more than 20 countries to collect and share data that could help in deciding policies and research into causes, diagnosis and treatment. Bob Wright of Autism Speaks stressed the importance of a unified global effort to deal with the world autism crisis:

"The resolution’s call for action and observances on April 2 will bring autism organisations from all around the world together “in a single voice to fight this terrible disorder,” said Wright.


“By bringing autism awareness to a global level, we’ll give it a voice to the millions of children worldwide who are undiagnosed, misunderstood, abused and looking for help,” he added."

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UN Committee Calls for World Autism Day, April 2

The United Nations Third Committee has approved, without a vote, a resolution sponsored by Qatar, calling on the General Assembly to designate April 2 as World Autism Day. Qatar, as the primary sponsor of the resolution issued a press release which follows. It is encouraging to see autism issues being moved on to the world stage. This kind of attention should help encourage those national governments, including the Government of Canada, which are doing little or nothing to address the autism crisis in their countries. It is no surprise that Autism Speaks, with co-founders Bob and Suzanne Wright, is at the forefront once again, in raising autism awareness, with a focus on addressing the real needs of autistic children and adults. Congratulations and a note of appreciation to Qatar the nation which has been the primary sponsor for the World Autism Day resolution.

Department of Public Information • News and Media Division • New York PRESS CONFERENCE BY QATAR ON WORLD AUTISM DAY RESOLUTION

Member States should break the “barrier of shame” of people suffering from autism and raise international awareness of the importance of early diagnosis and treatment of the brain disorder, which was estimated to affect 35 million people worldwide, Nassir Abdulaziz Al-Nasser, Permanent Representative of Qatar to the United Nations, urged this afternoon during a Headquarters press conference.

“ Qatar shares the concerns of a number of countries about the high rate of autism in children in all regions of the world,” Mr. Al-Nasser said. His comments come almost a month after the General Assembly’s Third Committee (Social, Cultural and Humanitarian) approved a draft resolution, 1 November (see Press Release GA/SHC/3899), introduced by Qatar’s delegation and co-sponsored by 50 Member States, to designate 2 April as World Autism Day. Once the draft resolution is adopted by the General Assembly, as expected, the Day will be observed annually starting in 2008.

Joining the Ambassador today was Bob Wright, co-founder of Autism Speaks, a United States-based non-governmental organization that works to raise awareness of autism and fund research for its causes, prevention and treatment. “Combating autism is going to require worldwide effort. It is not politically, geographically or economically centred. It is an equal destroyer,” he said.

In the last two and a half years, Autism Speaks spent an estimated $60 million on scientific and medical research, he noted. In the United States, children diagnosed before the age of three and then properly treated had a 50 per cent chance of graduating from public school at an appropriate age level. However, many African-American and Hispanic children, and children from non-English-speaking households, were not diagnosed until age seven.

Suzanne Wright, also co-founder of Autism Speaks, said 1.5 million people had the complex brain disorder in the United States, and a new child was diagnosed with it every 20 minutes. An immediate global response was needed to address the epidemic, she urged.

During the Second Annual International Forum for Children with Special Needs held in Doha in April, Autism Speaks and Qatar’s Shaffalah Centre, which assists disabled children, announced plans to launch an Autism Speaks Programme in Qatar.

Also during the press conference, Jacqueline Aidenbaum Brandt, a mother of an autistic son, shed light on her personal experiences, including the misconception society had of the brain disorder and the concerns of parents of autistic children. She said people often mistook an autistic child for an unruly or poorly behaved one, blaming the parent instead of the disorder for the child’s behaviour. Caring for an autistic child was complex, as parents were left to grapple with whether the child would one day be independent, and how he or she would be cared for after the parents had died or were no longer able to do so.

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Autism Is A Global Health Crisis - Suzanne Wright

Founder of Autism Speaks, Suzanne Wright, along with Priscilla Natkins and Andy Shih
Gulf Times Newspaper

Suzanne Wright and Autism Speaks are raising autism awareness around the globe. The information presented in the following article is basic and to the point. Autism is not a literary metaphor or a different cultural viewpoint, it is a neurological disorder characterized by a range of very serious deficits. Children with autism can be aided immensely by behavioral interventions. But parents and professionals have to understand this point and act promptly and decisively. Autism awareness, not misleading rhetoric, is critical to helping autistic children whatever their country of residence.


Autism is a global health crisis: expert
Published: Wednesday, 25 April, 2007, 08:43 AM Doha Time

Staff Reporter
AUTISM strikes without any discrimination of ethnicity, class, geography, gender or race, said Autism Speaks’ founder, Suzanne Wright, yesterday during the Second Annual International Forum on Children with Special Needs in the Shafallah Center.
Also speaking on the occasion were Ad Council’s executive vice president and director of client services, Priscilla Natkins and Autism Speaks’s chief science officer, Andy Shih.
Referring to autism as ‘an urgent global health crisis,’ Wright said that this fast growing, serious developmental disorder, has become an epidemic which is found in one of every 166 children in the United States.
“Though the causes are unknown, it can spread worldwide without any discrimination,” she explained.
The session, on the urgency of bringing Autism epidemic awareness through public service advertising, began by screening a documentary entitiled, ‘Autism everyday’.
The daily lives of eight autistic children were screened, along with their parents’ apprehensions. The children, all above three to four years, required constant attention and were seen restless.
The main symptom was ‘stimming’, a repetitive body movement that self-stimulates one or more senses in a regulated manner, some of them, being grinding teeth, jumping on toes, head banging and scratching. The child makes absolutely no eye contact and many of them stopped speaking after a particular age. Simple tasks like dressing, brushing and eating by themselves took hours and a mother agreed to this, saying, “it took me two years to teach my son to put his shirt on”.
There have been instances when a child affected by autism had not slept for two to three weeks.
Researches say that 80% of the time, parents with an autistic child end in a divorce, as they are equally helpless and cannot cope with the emotional, and financial issues.
Some of the measures taken for the care of children diagnosed with autism, are behaviour therapy, music therapy, physiotherapy and speech therapy, most of which are done at home.
The parents were apprehensive, as these treatments were expensive - as high as $100 per hour.
Suzanne Wright, who herself has an autistic grandson, Criston, said that grandparents also play an extraordinary role in the care of autistic children. She exhorted that they should provide support to their children to raise the diagnosed child.
Wright said that autism can be diagnosed when children do not exactly meet their milestones, or meet them at an unusually early time, such as sitting up before six months and walking before 10 months.
Wright said that raising awareness was the corner stone of her mission.
Priscilla Natkins spoke about the role of media and and the effective public service campaigns that were raised. Some of the advertisements screened urged the audience to know more about autism, through their website.
The campaigns launched have successfully increased parental knowledge. It was said that the earlier the awareness, the earlier intervention will help. The advertisement council relied on pro bono services from advertising agencies and the media.
The target audience was parents of newborn, and the secondary target being doctors and health care professionals.
Andy Shih, spoke about the research they in this field. He also talked about the importance of scientists all over the world linking and working together to find a cure for this neurological disorder.

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