Autism and Global Human Rights

Who would have thought that autism would become a human rights issue? I know I didn't and I have two autistic children. The Autism Society of America released a five page article in the Autism Advocate, their member only newsletter, on how Autism is a global human rights issue.

The autism rates across the world are astounding. The World Health Organization does not maintain global statistics on the prevalence of autism or treatments. In their 2007 report, Global Burden of Disease a case was made for the critical situation the world faces with a growing population of people with mental and neurological disorders including autism, which accounts for 11 percent of the global disease burden. This number is projected to grow to 14.7 percent by 2020. Action for Autism, the non-profit autism advocacy group in India, estimates that the world wide rate for autism is 1 in 250.

The estimated number of cases that the WHO does have on a select number of nations is disturbing. It's just not the United States with astronomical numbers with around 1,500,000 reported cases. The WHO reports 1,100,000 cases of autism in China, while The China View reports around 1.8 million people with autism. The rate of autism is growing at 14% around the world, but in China it's growing at a rate of 20% per year. What is more disturbing than potentially 1.8 million people in a country with an estimated population of 1,321,851,888 (1.32% of the population with 8 in 10,000 being children) are not covered by the Chinese law on the Protection of the Handicapped.

India has a population close to that of China with 1,129,866,154 people. 2,000,000 of those have some form of autism. The AFA puts the number a little lower at 1.7 million or 1 in 500. Indian law doesn't have non-discrimination laws in place to protect the handicapped either. One example of discrimination these people face is that they not allowed on aircrafts because they present a 'danger' to the other passengers. The AFA has been working for several years to have autism included in their disability laws to prevent discrimination of this type.

The WHO reports the number of autism in four other countries, the United Kingdom (650,000), Mexico (50,000), the Philippines (500,000) and Thailand (180,000). The ASA states that these are numbers of pandemic proportion. I question their use of the word pandemic because that implies that autism is contagious, which it is not, and the ASA knows this, so to report that autism has become a pandemic instead of an epidemic is irresponsible. The verbiage should be more responsible for an organization who works to educate the general public and bring awareness. That aside they point out that neurological disorders is one of the greatest threats to public health. 1 in 250 people world wide is high ratio that shouldn't be ignored and the United Nations as been setting down the legal framework and precedence for protecting individuals on the autism spectrum in international laws that include the Convention on the Rights of the Child, which came under much criticism in 1989 because of it's conflict with the U.S. Constitution and domestic policy, and the more recent Convention on the Rights of Person with Disabilities.

Reading about the discrimination that other countries have against those with autism and other mental disorders, I still wasn't entirely convinced it was a human rights issue, especially in the United States, but the ASA puts up a good argument for it citing how parents have to fight for the educational and health needs of their children.

Since the diagnosis of my 13 year old daughter seven years ago I have heard a great many stories directly from parents of other autistic children. One woman was told by the local county and state that her low functioning son was only eligible for 3 hours of ABA (applied behavior analysis) through the county a week when all of his doctors agreed that he needed 40 hours if he was to make any progress. Full time in home ABA runs around $40,000 a year and is not covered by insurance. In fact, I was unable to get speech therapy for my 6 year old son because of two year long waiting lists and out of pocket funds because speech therapy for autism is not covered by insurance. I went through the same thing trying to get speech therapy for my 9 year old daughter with speech apraxia caused by undiagnosed celiac disease. I was told that if speech therapy was needed because of trauma due to a car accident or the like, there wouldn't be a problem getting the kids in quickly or getting it covered, but because their needs were neurological and congenial in nature, there wasn't much they could do. I am lucky that I had come across a program called Straight Talk through NATHHAN, the National Challenged Homeschoolers Associated Network that could be implemented at home by parents.

Other parents that I know have had to hire lawyers and educational advocates to ensure that their childs IEP (individual educational plan) is followed by the school they attend. A number of teachers are content to allow autistic children do what they want in class as long as they aren't disruptive.

Then there is the issue of abuse. Handicapped children are at a higher risk of being abused both physically and sexually than others. A recent article in Autism Vox talks about how a 14 year old girl was sexually abused by her father, but because she is non-verbal and has to use facilitated typing to communicate, no one wanted to believe her. People still don't want to believe her even though upon examination a registered nurse reported there were signs of sexual assault.

I personally know someone whose non-verbal son was physically abused at school by the teacher. Her little boy couldn't tell anyone so his aide said something to his mother, violating school procedure that the principal be told first. The aide was transferred and eventually quit because of a hostile work environment. The teacher retained her job without any disciplinary action. The mother honestly believes if the aide had followed the chain of command that the school would have covered up that her son was being abused.

The more I think about things like this, the epidemic of autism has spawned human rights issues in how the disabled are taken care of and treated, even here in the United States. The ASA has made a Declaration on the Human Rights of Persons with Autism Spectrum Disorders that states:

People with autism have the fundamental human right to: live an autonomous, independent and meaningful life, self-determination and direct involvement in decisions affecting their lives, accessible and appropriate education, housing, assistance, care and support services as well as sufficient income, and the freedom from threats, discrimination, social exclusion, and cruel and abusive treatment.

These human rights seem simple enough yet they aren't happening globally or even in our own back yard despite anti-discrimination and handicapped accessibility laws. We have a long way to go.