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Roger N. Meyer "...of a different mind "
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LETTER TO GUNILLA GERLAND - ON PARTICIPATORY RESEARCH

Roger N. Meyer 1998

Comment below 2005

 

 

     [This is an Email I sent to Gunilla Gerland at the beginning of my own self-determination journey.  Gunilla and I were occasional members of an Internet autism chat group.  I encouraged her to become an active partner in the design and furtherance of a research project involving children she was working with.  By early fall of  1997, I had drawn together three other co-principals in what became known as the Portland Asperger Syndrome Adult Employment Research Project.  In searching around for ideal paradigms for the research, I encountered writings from the participatory research movement.  I wanted our project with adults to actively involve our participants as much as possible in all phases of the research.  The participatory research model is one that began with the People First movement in the mid-1970's in Eugene, Oregon.  Even by the late 1990's, participatory research was heavily resisted by traditionally trained social science researchers.  Absence of participant feedback in many projects centering on adult disability issues accounted for justifiable criticism of the validity, credibility, and accuracy of that research.  I didn't want our work in Portland to fall subject to the same problems.]

 

 

Subject: Your projects

Date: Sat, 13 Jun 1998

Organization: www.pdxaspergerproj.org

To: Gunilla Gerland gge@swipnet.se

 

Gunilla:

 

     I am intrigued by your description of the group work involving newly diagnosed AS/HFA kids.  Please let me make a suggestion.

 

     While it is important for the kids to "know" about what they have, it is also important, from the first moment, for them to accept themselves, regardless of what label has been applied.  For that reason, I recommend that AS individuals be involved from the first, as successful models of what their lives may be like in future. There is a chance that if you find some articulate and compassionate older kids as well as adults who have an AS diagnosis, that they can also be integrated into the process early.

 

     There is nothing like having role models, possibly even mentors, around, who have "been there, done that."

 

     The other thing I am interested in is the very process of the project.  How large will the groups be? Are the kids going to be matched by similar developmental age, as opposed to chronological age?  We both know how the emotional maturity and social skill factor varies widely among AS folks.  What are the professionals going to be doing or saying, exactly?

 

     In furtherance of the first topic of including AS individuals very early, and continuously through the groups with the kids, let me mention just a few things:

 

     (1) Professionals have a tendency to take issues and involvement away from their patients or clients.  Rather than presenting something, wouldn't it be important for the professionals to participate as moderators and prompters in discussion centering mainly on the kids themselves, with the professional steering the conversation, rather than acting as a "resource?."  The reason I propose this is that at the very early stages of time following diagnosis, I've found most adults want to talk with one another first rather than the experts.  We wish to validate our experiences, and also mourn that part of us that was defined by others, the part that never "fit."

 

     I can't imagine this need being much different with recently diagnosed children, even though the literature suggests that HFA/AS children relate easier to adults than to one another.  On this matter, I'm not so sure, because there has been an absence of testing what is I believe to be this basic need with children in opportunities where their interest in themselves could be refocused back into their own peer group by researchers sensitive to less-than-obvious signs of same-generation curiosity of these children.  If researchers just "assume" kids won't relate to one another easily, they won't look for signs of desire to do so.  My feeling is that if that is to occur with your group of children, the results of the research might be skewed by a fundamental flaw in the research design itself.

 

     Depending upon how enmeshed they were with their parents and other family members, and others who imposed an identity on them that clearly was not their own, the kids will take variously shorter or longer periods to mourn the shedding of that old identity, and to prepare to see themselves not through others eyes as much as through their own.  Here is where the support of AS individuals who have gone through the process they are now going through would be very helpful.  Doubts can be shared.  Commonalities compared.  Uniqueness recognized and validated.

 

     (2)  The presence of AS individuals throughout this process is essential to keep the professionals' feet to the fire.  We know when we are being patronized or talked down to.  We are acutely aware of power differentials in our work and casual relationships. In other words, we would keep them honest to their professed desire to work with the children as partners rather than ON them like mechanics, to guide the children through the sharing our experience and perspective, rather than DIRECTING them.  In all cases, all of us would be following one another, and learning from our common experience and the process itself.

 

     As adults, we knew all along that something was wrong, that something was not clicking.  Children also know this, at ages much younger than "experts" suppose.  If children can share this information with each other, with the help of older or more settled AS individuals, they won't feel so alone in their aloneness.  Through hearing their inner voice expressed by other AS children and older AS folks, they'll learn to appreciate that, at their age, aloneness is a manageable feeling, and while not pleasant, most of us have it all our lives.

 

     (3)  I doubt that AS mentors and role models will go overboard in sharing their success stories.  We know how hard success has been to attain, and we, least of all people, would not say it was easy.  We AS folks should not be presented as displays or exhibits or "poster" children.  Indeed, by having AS persons collaborate in the process from the beginning to the end, rather than act as "presenters" or "treats" for the kids in a limited way, AS kids will see that work-sharing is being modeled before their very eyes.

 

     The dynamic of cooperation, treatment of persons with equal respect, and the fact valuable work is being done by ALL parties, AS and NT's alike, presents a powerful first glimpse not only of what is possible, but HOW it is done.  After all, isn't that parents do with their children? Constantly?  The kids should be allowed to feel that what they are experiencing and witnessing is not strange, or impossible.  Rather, it is occurring on a very matter-of-fact level, right before them.  I couldn't think of a more positive experience for everyone involved. Such an experience can leave a life-time impression on the child as well as the adult. All adults.

 

     I am particularly sensitive to the issue of AS/NT collaboration.  First, it defines society, at least as it is for the moment.  Second, success is possible, and when modeled early, is seen as neither exceptional nor impossible. It is a topic of acute interest to me because I am the founder and a co-principal with three others of an adult AS employment research project.  While it has seen its ups and downs, the experience of collaborative work has been exhilarating and a positive experience for us all.  It certainly has sensitized me and my partners in ways never imagined about what it is like for folks to work on two wavelengths simultaneously, and still arrive at the same destination.

 

     Of course the other thing is I am a firm believer in is self-determination and self-advocacy.  Kind of shows, huh?

 

     Do write.  I know you have a busy schedule, and soon mine will become equally busy.  We have met on "autism" a few times. I'm that  "Roger".

 

Copyright Issues

 

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