My name is Paul Jason Brughelli and I have autism (specifically Aspergers). I am writing this to shed light on an organization called Autism Speaks, which treats autism as a disease. Autism Speaks claims that it’s trying to find a cure for autism.
I will explain, to the best of my ability, to break down the wall of ignorance that surrounds the autism spectrum. Then I will explain one of my problems with Autism Speaks.
Autism is a neuro-development disorder that is measured in a spectrum with a large pool of symptoms. No two persons with autism are the same. For example, Person A could be low functioning with several symptoms, while Person B could be high functioning with many symptoms.
Autism is not a disease; it is a mental handicap/disability. Psychologists have been studying autism for many years, even back to the 1920s. Yet, even after nearly a century of study, we still don’t know the causes of it and fully understand it. However, the great majority of persons with autism are responsible, non-violent individuals.
Most of the higher functioning people are employed and contribute beneficially to society. I, for example, am gainfully employed with two jobs. Many scientists, engineers, doctors and other professional people have autism tendencies, but are valued members of society.
There is a lot of negativity toward autism, especially in the last several years. For example, people with autism are believed to be anti-social basement dwellers who live with their parents and act like children regardless of age. Persons with autism do have friends. I have many friends, but I don’t hang out with them as much as I’d like because our schedules aren’t open at the same time.
I am a member of The Church of Jesus Christ of Latter-day Saints, and I attend a local ward. I am independent and I have not lived with my parents since 2008. I maintain my own apartment and do my own shopping, cooking and housecleaning. I do my own bill payments and am current in my financial obligations.
People with autism do have many strengths; they can be very detail conscious and pay attention to details, some more extreme than others. They tend to be very meticulous in their jobs and like to get work done exactly and thoroughly. I heard one person explain that the brain of a person with autism is wired differently. Some can look at a problem from outside the box; some can be artistic and can be very schedule oriented. I want to write stories, fantasy and science fiction.
But with strengths there are also weaknesses.
People with autism do have a hard time communicating with other people, especially with their own family. Higher functioning persons can still communicate as anyone else, but explaining something may not come out right. Some can over explain something, while others don’t explain enough. When I try to explain something, details sometimes pop up into my head that I feel need to be explained, but don’t really add anything to the subject.
Now to Autism Speaks: This organization treats autism as a disease that needs to be “cured” or eradicated, despite what I explained above. You would think that no one in their right mind would listen to this nonsense, but the sad fact is, people are listening. Autism Speaks is getting sponsors and is recognized as a legitimate charity. You would also think the facts should have knocked some sense into these people by now. But we live in a day and age where people can live in their own sphere of ignorance and ignore the facts.
I read a fact sheet on autism from the National Institute of Health and what I read left me disheartened. The words “treat” and “treatment” were used as implicating that autism is a disease and a division of their organization is trying to find a cure.
The dumbest thing I’ve found yet in my research is that the U.S. Centers for Disease Control and Prevention is involved with autism research. Let that sink in. A government organization that specializes in “diseases” is going after a “mental disorder.”
My ultimate problem is Autism Speaks does not need to exist because there are programs and organizations like R.I.S.E., Valley Mental Health and others. Persons with autism can be taught how to live with their disablity and parents can learn as well. Above all else, children with autism need to be loved like any other child and treated like every other child.
There is more to the autism spectrum than I have written. What I have written is what I gathered growing up and my time of personal research, including the research on this piece.
Trust me when I say this: I do not want pity. I do not want people looking down on me, feeling sorry for me, thinking of me as some kind of monster. Autism is not a disease. It is not out to take your children away. People with autism are not retards; they are just human, as human as every other human being.
I ask anyone who reads this to understand and not to be a partaker of this dehumanization of autism.
My name is Paul Jason Brughelli, and I am a human being.
Brughelli is a Tooele City resident.