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autistics.org Editorial:
Who Can Call Themselves Autistic?
This is a response to a letter titled "A Danger in Speaking" 1 that Thomas McKean distributed on June 15, 2006, to leaders in the autism community, particularly the USA autism community. The letter said, in part, that people claiming to be autistic and speaking at conferences should be asked or required to prove that we are autistic, and possibly even to submit information about what our education and early lives were like. McKean also indicated that he viewed adult diagnoses and self-diagnoses as inherently suspect.
Autism is a different way of perceiving and responding to the world. The validity of someone's claims to being autistic cannot be tied to political opinion, age at diagnosis, or whether the person has an official diagnosis.
Autistic people are often overlooked in childhood. Especially in the past it was common for people to not even know what autism was, and even "severely" autistic people went undiagnosed. Many people were diagnosed with autism in childhood, but their records were destroyed, lost, or hidden from them. Many people did receive a diagnosis, but it was called childhood schizophrenia, mental retardation, attention deficit disorder, or learning disabilities. Still others received no diagnosis at all. Some people did not receive diagnoses because of their parents' culture or social class. To ignore these things is to ignore the amount that a society can change. Because of this, we believe adult diagnoses are as valid as childhood diagnoses.
There are also many reasons for a person to remain undiagnosed even after they learn that they are autistic. Some legitimately fear workplace or insurance discrimination discrimination if others know of their diagnosis. Some want to avoid the psychiatric profession, especially if they were mistreated by this profession. Others find that there would be no value in obtaining a diagnosis. Still others do not believe in having labels from the medical profession at all, not believing autism to be a "disease" that must be "diagnosed". Many have no money for a diagnosis. Because of this, we believe that a "self-diagnosed" person can be as autistic as any professionally diagnosed person.
Autistic people holding less popular opinions find ourselves required to prove who we are more than any other group, even other autistics who happen to hold popular opinions. Parents of autistic children are not required to submit proof of their children's diagnosis or legitimate legal parenthood in order to represent themselves as experts based on their experience. Professionals, also, while often held to some standards by their particular organizations, are often able to speak as experts without the need to prove their qualifications. Even when professionals are exposed as frauds who are misrepresenting their qualifications, many people in the autism community continue to provide a forum for them.
Autistic people with popular opinions (supporting cure, ABA, mercury causation theory, disease-model, or tragic views of autism) are not held to much scrutiny at all. In fact, the only autistic person on the conference-speaking circuit exposed as definitely misrepresenting herself as another kind of autistic person, is a 40-something speaking woman named Marty Murphy who posed as a 25-year-old non-speaking autistic man. She did so in a piece of writing about how horrible autism was.2 Many people in the autism community still defend her actions and refuse to question why she was posing as someone she was not, because her viewpoints about autism are popular.
Autistic people with less popular — but often more scientifically sound — opinions (such as people who do not believe in cure, or who question the ethics of certain things that are considered autism treatment) are routinely asked to prove that we are autistic. We are routinely publicly dissected, our privacy is invaded, and some are slandered, in a search to prove that we are not autistic (or not autistic enough). This has even happened to McKean in the past.
In his letter, McKean asks for proof from all autistic people speaking on the conference circuit. He legitimizes this, however, entirely by describing autistic people with less popular opinions, even though the only person shown not to be who they said they were was an autistic person with a popular opinion. He is attempting to throw suspicion on us because of our opinions, not because of how autistic we are or are not. In doing so, he is continuing a long tradition of discrediting us. He says that we are a danger to autistic children, whereas the popular viewpoints are apparently not dangerous.
We disagree with McKean on these issues, but we would never ask to see his autism credentials. That is private medical information that should be entirely a person's decision whether to show people or not. Private information about a person's early life falls into the same category.
The autistic people who sign this editorial have all manner of life experiences, educational experiences, and labels within what is called the autistic spectrum. Other people who sign may not be autistic, but share our concerns.
What ties us together is that we believe a person is equally autistic whether or not they have a piece of paper, that autistic people can have the knowledge and insight to understand we are autistic just as non-autistic people understand that they are non-autistic, and that it invades our privacy to request our medical records. We believe it would be discriminatory on the basis of disability, culture, income, social class, and age, to view someone's autistic status as suspect on these grounds. And we believe it discriminatory that autistic people with less popular opinions are asked to prove ourselves, when other kinds of people, even those who are clearly untrustworthy, are not asked the same.
Because not everyone is able or willing to give out their records, and it is unfair to judge people's opinions on this, those of us who have such records refuse to give out our private medical records when asked for them by people who want to use them to legitimize our opinions. Being autistic, rather than proving oneself to be autistic, should be all that is required to call oneself autistic.
1 http://nts-are-weird.livejournal.com/14207.html#cutid1
2 http://www.neurodiversity.com/response_to_my_name_is_autism.html
Signed,
A M Baggs, Phil Schwarz, Joel Smith, Laura Tisoncik (authors)
If you want to sign this as well, please email whoisautistic@gmail.com.
Other signatures:
| Camille Clark | * | Kevin Leitch |
| David K. March, Springfield, Missouri (US) | * | Chambers McLaughlin |
| Elisabeth Clark | * | Bonnie Ventura (Ohio, USA) |
| Michelle Dawson, Montreal | * | Kassiane A. Sibley |
| Neral (Peter Hendrickx) | * | Michael Ellermann, Bornholm Denmark |
| Kelly Styron (Ann Arbor, Michigan) | * | Denise "Moggy" DeGraf (Northern California, USA) |
| jypsy [ janet norman-bain ] | * | Joseph J. Mele |
| Shira Sandler, Buckinghamshire, England | * | Avram Caspy |
| Tera Kirk (Nebraska, USA) | * | Nick Walker (Berkeley, CA) |
| Alison Cummins (Montréal QC) | * | Athena Ivan Sheth |
| Lili Finn (Tipperary, Ireland) | * | Kate Albrecht (Sacramento, California) |
| Dinah Murray | * | Lisa Cohen (Newton, MA), www.aspies.blogspot.com |
| Kimberly Tucker (Seymour Conn. USA) | * | Barbara Sutton (Stirlingshire, Scotland) |
| John Gagon | * | Larry Arnold |
| David Leafgreen(southeastern Iowa, USA) | * | Kate Gladstone |
| Cody "codeman38" Boisclair | * | Bronwen van der Wal |
| Jane Meyerding | * | Alyssa Kaufman |
| A. Corwin (California) | * | Gayle Fitzpatrick |
| Mara Palmen (Seattle, WA, USA) | * | Philip Ashton (Lancashire, England) |
| Sarah Triano | * | Wendy Buisine |
| Gretchen Lentz | * | Patti Shepard |
| Debra A. Bettis | * | Kathleen Seidel |
| Dave Seidel | * | David N. Andrews, BA-status, PgCertSpEd (pending), Kotka, Finland |
| Bob King | * | Amanda "Laughing Hyena" Johnson (Ventura, California) |
| Ettina Female Ettin | * | June Roberts (NE Florida) |
| Brian P. McClory | * | Julia Thompson (Texas) |
| Anne Bevington | * | Melvin Dahl Coplin, MA, MHP (Stanwood, WA) |
| Corina Becker (Kingston, Ontario) | * | Roger Turner |
| Love Sanchez-Suarez | * | Helen T. Ford (Scotland) |
| Cole Roland (Northern California) | * | Lisa Collins |
| Aage Sinkbæk (Denmark) | * | Amy Nelson |
| Gareth Nelson | ||
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