4 tiaras awarded to Kathleen Seidel

4tiaras
Originally uploaded by autismdiva.

Click here for the context of Kathleen's response to Dr. Insel of the National Institute of Mental Health.

Four tiaras is Autism Diva's highest award for outstanding effort done on behalf of autistics everywhere.

Kathleen Seidel of neurodiversity.com has a record of similarly extraordinary work in autism advocacy.

Autism Diva offers deep gratitude to Kathleen in addition to the award.

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7 April 2005

Dear Dr. Insel,

Thank you very much for your reply. It is unfortunate that the need for brevity so often trumps the need for nuance in newspaper articles and the interviews upon which they are based.

I understand and share your concern about "trivialization," which is relevant to those on all points on the autistic spectrum (perhaps better described by a friend as an "n-dimensional hypervolume of overlapping 3D sets"). In fact, I spend considerable time communicating with school staff so that they might understand the extent to which my ASD offspring's challenges are a function of neurology, rather than expressions of "personality" that can be turned on and off at will.

All the same, I disagree with your suggestion that expressions such as "kidnap victim" are appropriate for use in efforts to raise autism awareness. Certainly, the literature of autism is replete with them — one popular book includes a mother's description of her child as "a person without a self... a life without a soul." Certainly, no parent could ever be held at fault for experiencing grief and distress born of love for a child who experiences extraordinary health and developmental challenges. Nonetheless, language that is appropriate for a private therapy session is not necessarily suitable material for an advertising campaign. Too often, such heartfelt sentiments translate into stereotype-perpetuating sound bites that do not draw attention to the needs of autistic children and adults as much as they draw attention to the grief, inconvenience and expense their disability poses to their families and to society.

Unfortunately, such language is not only employed by journalists, but also by foundations and research institutions, in public announcements featuring such slogans as, "Children with autism are always with you and oddly enough never really there." Indeed, autistic children are there — perhaps not speaking, but certainly listening, and growing up, and remembering. No matter how eloquent, expressions of raw parental despair and misimpressions of the inner life of another human being do not need to be broadcast far and wide. Rather, they are signs that parents and children alike need emotional support, education in ways to communicate, and education in the development of empathy. Familial, popular and scientific attitudes about disability are very much in need of transformation, and they are expressed and shaped by language. The exigencies of fundraising should not take precedence over the need of autistic people to be regarded and publicly described with dignity, especially by those who advocate for their welfare.

So many children are getting ASD diagnoses these days, at earlier ages than ever before, with a wide range of potential outcomes. There is an abundance of new information emerging about autistic development, neurophysiology, cognition, intelligence, sensory experience, and communication; and many new techniques and technologies that can help in the development of those capacities and remediation of difficulties that go with the territory. Much of that information comes not only from research, but from people who are themselves on the autistic spectrum, for whom technology and particularly the Internet have been a social, economic and communicative godsend. Many people who might have formerly been described as "kidnap victims" are now able to tell the world, "I was not kidnapped; I've been here all along — and I have been listening."

I particularly share your concern about the trivialization of depression. Since individuals diagnosed with ASD's are at high risk for depression, I regard depression prevention as one of my primary maternal responsibilities. I feel strongly that depression prevention should also be a top priority for any public program designed to ameliorate the suffering of autistic citizens and their families. This is no less important than development of appropriate educational techniques based on an understanding of autistic cognitive characteristics, therapies and medications designed to address specific impediments, adult living options and other practical support services, and enforcement of anti-discrimination laws. Depression is a predictable response to chronic marginalization and denigration. Effective depression prevention cannot be limited to development of medications, or teaching autistic individuals techniques for coping with life in a brutal world.

You are in a unique position to elevate depression prevention for autistic citizens to the status of a public mental health priority. One essential means for implementing this priority would be the cultivation of a public climate in which autistic children and adults are regarded with respect, no matter how profound their impairments, and the exercise of discretion in the publicity and fundraising efforts of organizations and public agencies concerned with autism. In so doing, the dignity and humanity of all may be enhanced. Autism researchers and advocates must realize that no matter how legitimate their concerns or how noble their intentions, it is unethical to portray autistic children as tragic objects of pity for the purpose of attracting attention and raising funds. There has got to be a better way to garner public support for the needs of even the most disabled individuals with autism.

Thank you again for your time and consideration.

Best regards,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring
neurodiversity.com"

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Autism Diva
Behold the power of neurodiversity.