Friday, April 26, 2013

Interview with Jim Clewell- Autism Acceptance

Jim Clewell, who lives in the Netherlands, has provided us with this very insightful interview.

I was born in 1966 in the eastern US, severe behavioral and communication problems lead to a diagnosis of MBD with autistic and hyperactive components in 1972. 

My parents chose to ignore the advice of experts, and educators in those years missed the skills to do anything for me. 
My diagnosis was confirmed when I was 15. Physical abuse and neglect was my part in the public school system, my ability to perform in endurance sports afforded me some degree of acceptance and less torment in the last two years of high school. 
The US Air Force gave me the First peace of structure and support, affording me a reasonable start in my adult life. 
I got out of the Air Force in the Netherlands in 1990, and suffered a psychiatric break during my nursing study in 1996. 
I finished my study in 2001, going on to work in mental health, deviant behavior being the only thing I truly understand. 
After years of success in other fields of mental health, I work since five years as a counselor for persons with autism and a normal to high intelligence…. Next to my work as a counselor I am member of a workgroup of professionals, and a panel of autistic adults, working on policy for guidance and care by adults with autism and a normal intelligence. 
I am also a father of an NT daughter.
Jim, that is a very interesting career trajectory. Can you tell us a bit about what is your life like as an Autistic person now?

My life is better than most, I realize this. I have a network of friends and colleagues who value my traits and support me where I am handicapped. They make use of my ability to commit details to memory and to see extreme details in context, they make use of my ability to see different aspects of a situation than the rest. And they realize that I mostly don’t know what the “feeling” is in a setting, so they have to support me as to judging the ambiance where it is not supported by objective information.

What is most difficult about being Autistic?
The most difficult? This has shifted through the years. As a child my answer would have been a question: why does everybody hate me. As and adult it’s the fact that my brain can know so much of things which are data, and yet understand so little of the common experience which the others seem to share without effort. One of the few friends I had in my puberty said it best: “Jim, you know everything, but you understand nothing”. This is frustrating, as if everybody speaks a language which I cannot see or hear, and in the past it has sometimes caused me to be distrustful, thinking that others did it to hurt me. Other things such as sensory overload, are hindrances, but I’ve developed enough coping skills to work around those things most of the time. And as for a general overload, I have friends and colleagues who see that coming and protect me from it. They say at such moments that Jim is temporarily defect……

What is the most exciting thing about being Autistic? 
I now realize what I did not realize as a child. My brain can do other things with information than most peoples brains can. As a child I was tormented for being a walking encyclopedia, and for having a different perspective in every situation. I have since learned that these are talents, gifts. My brain is made with deficits in some areas, but with extreme talents in others. Not only can I absorb and use huge amounts of data, not only can I see that data as a sort of model in my thoughts, but I also don’t know where the “box” is. Everybody speaks of learning how to think outside the “box” in finding novel solutions to problems….. I have no clue as to where that “box” is, making it a talent.
Outside of that I enjoy reading the lay of the land, travelling, and seeing patterns in landscape which are clues to the history of that landscape. I’ve noticed that this is a talent (and interest) which I only share with a few people.

How has the Autism Acceptance Day/Month effort over the past three years affected you personally?
It hasn’t affected me personally, except as a reason to spend more time pointing out the need for emancipation.
I believe that this should be the focus of Autism awareness: EMANCIPATION!! Not benefits, not treatment, emancipation, freedom to be, to be unique, to be different, to be valued, to be accepted, to be loved, to work at a level fitting one’s abilities, to earn income based upon one’s ability to produce, to be supported and at the same time be seen as a whole citizen. 

Emancipation means that services should be tailored to individual needs.

It also means that services and supports should not alleviate all discomfort, they should encourage and support individual development.

We are human, and as all humans we need a degree of discomfort and challenge to develop.

The coaches and supporters should aim their efforts at helping the individual to see what he or she can learn from a situation of challenge or discomfort.

From experience I know that I don’t learn well from abstract concepts, I need concrete situations to practice, fail and learn in.

What is one thing about acceptance that would make a difference in the world?
Neurodiversity implies valuing each others skills and identity for what they are and can bring to the whole. This implies a world of mutual service, helping one another. Helping one another because we need each others help means we are mutually dependant, and less likely to try and harm each other. My past of being harmed leads me to see this as a good thing. 

Do you have children or other family members who are Autistic?

Yes, I’ve got several persons with autism in my family, and also a few in my wife’s family. My family also has many men in it’s past with a high level of technical competence and low level of social competence. Only in the past there was a greater acceptance for those who were technically adept and socially inept.
What would you like most for your family members, when it comes to autism acceptance?

Only that I would like to leave them a world in which they are valued as human beings, and not seen as cases, problems or diagnoses.

Thank you, Jim, for taking the time to do this interview. I really love the idea about EMANCIPATION! I think it is an important addition to our thinking about what autism acceptance means. 

Comments are turned off right now. After I contact Jim again, they might get turned on.