I have an autism spectrum disorder diagnosis; therefore, I am an autistic person. “Autism is a neurological and biological disorder that affects movement, anxiety and stress management, communication, sensory, behavioural, occupational, and social skills. Autistic people have a different perspective and perception of the world. Non-autistic research scientists are studying how the brain of people on the autism spectrum differs from typical people. It is indeed an excellent idea, but the Obama administration needs to provide various resources for autistic individuals who already exist. In addition, too much genetic research can lead to pre-natal testing and abortion. Concerned medical professionals, educators, and parents of people on the autism spectrum want to improve their loved one(s) quality of life. Nonetheless, better options should exist. Parents are usually pro cure, and autistic people are usually anti cure.
Scott Michael Robertson, a scientist who happens to be autistic, is trying to refocus the autism spectrum research agenda. I am neither pro nor anti cure. Scott and non-autistic scientists should focus the scientific agenda on educating, accommodating, supporting, and treating the various issues that are present with the autism disorders.
The research agenda should focus on educating autistic people. For example, people on the autism spectrum should be taught skills to interact with people who do not have a neurological disability. One way of teaching autistic people skills to interact and function with others is to use the discrete-trial method of Applied Behavior Analysis.
The research agenda should focus on accommodating people on the autism spectrum. Accommodations are modifications in daily living, employment, and in other aspects of life to assist an individual on the autism spectrum to fully participate in society and improve quality of life. Accommodations should be a right, not a privilege. We must find ways to improve the quality of life for children and adults on the autism spectrum through research and funding into adaptive augmentative communication such as devices and laptops. Many individuals on the autism spectrum are efficient, reliable, and trustworthy employees. We need to find practical ways to accommodate autistic people to increase their productivity. For example, Joel Smith has a diagnosis of Autistic Disorder. He uses an alternative augmentative communication device or his speech synthesizer to communicate when he has difficulty with speech. Other examples of accommodations include but are not limited to: flexible working hours, use of e-mail, sign language interpreters, Braille, telecommuting, headphones with or without a compact disc player, assistance with filling out papers, part-time hours, name tags at meetings, and strict anti-harassment regulations.
The research agenda should focus on supporting people on the autism spectrum. The autism spectrum is diverse with people of varying levels of ability. If you have met one autistic person, then you have met one autistic person. The autism spectrum is a neurological, biological, and life-long disability with medical manifestations. While all individuals display a variety of traits and behaviours, they may have common characteristics in the areas of: communication, socialization, repetitive behavior, hypo and hypersensitive senses, and deeply focused and passionate interests.
For example, services such as: discrete-trial methodology of Applied Behavior Analysis, positive behavioral supports, speech, occupational, physical, music, other therapies, vocational and adult life skill programs, and other services are not being funded by the Obama administration.
The research agenda should focus on treating the various medical illnesses, conditions, and mental health (co-morbid) disorders that many people with autism have. Many individuals on the autism spectrum have gastrointestinal problems and co-morbid disorders that require either mainstream or biomedical treatments, or both. For example, some individuals are placed on a specific diet such as gluten and casein free. Other autistic people take natural supplements for anxiety disorders, obsessive-compulsive disorder, personality disorders, and other disorders. Jake Crosby, an adult with autism, has done Methyl B-12 injections, and he reported benefiting greatly from them.
Biomedical treatments such as chelation in any form and Hyperbaric Oxygen Therapy are neither proven effective nor safe for treating autism spectrum disorders, co-morbid disorders, or gastrointestinal issues.
To some extent you are confusing the purposes of basic research, public health initiatives, and social services.
ReplyDeleteTeh job of science is to unravel how the brain works (as an example.) The job of public health people is to spot trends, identify needy groups, etc. Finally, the social services people take what science teaches us and uses that to help people via therapies, strategies, etc.
I agree with you that we need more of all those things.