Autism & Personhood

An exchange of correspondence between Kathleen Seidel, Neurodiversity.com, and Dr. Thomas Insel, Director, National Institute of Mental Health (NIMH)

Dr. Insel's 5 April 2005 reply
Ms. Seidel's 7 April 2005 response.




4 April 2005

Dear Dr. Insel,

I am the mother of two adolescent daughters, one with a diagnosis on the autism spectrum. I make an effort to keep up to date with the latest news about autism and to advocate for the needs and rights of those on the spectrum. My attention was drawn to Sharon Jayson's recent article in USA Today, More questions than answers in autism, in which you are interviewed. Of course, I recognized your name as the Director of NIMH and the Interagency Autism Coordinating Committee. I was, therefore, particularly disturbed to read the following quote:

" '(autism) really robs a child and a family of the personhood of this child,' Insel says."

I have no doubt about your commitment to improving the health and welfare of autistic citizens, and I am grateful for your leadership in developing a research agenda that holds promise to further that goal. However, I must urge you to consider the implications and impact of stating that autistic individuals are lacking in "personhood."

Autistic individuals have plenty of challenges, including the obvious ones, such as difficulties with communication and interpersonal interaction, along with perceptual and sensory issues. There are also the very real challenges of navigating an environment in which they are bombarded with reminders of their presumed inadequacy and the tragedy and burden that their existence represents to their families and to society. All too many people feel free to characterize autistic people as living a "fate worse than death," as "never really there," as "kidnap victims" and "hollow shells."

The last thing in the world that they need is reinforcement by a prominent government official of the all-too-prevalent public perception that they are somehow "less than human," either in childhood or adulthood. A person who has difficulty with communication, with being touched, or with making eye contact is no less of a person than one who does not have these difficulties. Granted, it can be more difficult for average parents to care for a child who is autistic; the parents no less than the child are faced with the challenge of developing adequate means of communication, and of interpreting the atypical forms of communication that their child might use. But parental grief and frustration is no excuse for suggesting that an autistic child (or an adult, for that matter) is any less of a person than any other human being.

Most disabled individuals will eventually experience what it is like to be regarded as less than human. Most autistic individuals will eventually develop language, if not speech. In time, many will be able to understand the implication of the pronouncement, "you are not a person." Should such dehumanizing words be supplied by the Director of NIMH?

Sincerely,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring
http://www.neurodiversity.com




Dr. Insel's Reply

5 April 2005

Dear Ms. Seidel,

Thank you for your thoughtful and important letter. I had not seen the article you mentioned in USA Today, but I agree with your concerns that no one with autism be considered as "less than a person". When I spoke to this reporter, I stressed that this is a spectrum which, at one end, leaves parents feeling that their children have been kidnapped (Jon Shestack of Cure Autism Now has been very eloquent about this). I entirely support your point of the need to respect the humanity and dignity of children and adults with autism. In my position at NIMH I am frequently in the position of having to explain to the public that people with mental disorders are exactly that: people. This is not an explanation that needs to be given for people with heart disease or people with cancer. With disorders like autism (or other mental disorders), too often we see the disorder and not the person affected.

At the same time, there is a tendency by the media either to trivialize or romanticize these disorders: people with depression are "sad", with bipolar are "exuberant", with schizophrenia are "weak", with anorexia are just "willful". My concern is that children with autism will be dismissed as "shy" or "loners". Mental disorders cause more disability and kill more people than most forms of cancer, but I have not heard anyone describe cancer as an endearing character trait. Increasingly I find myself having to explain to reporters that mental disorders are serious medical illnesses associated with immense suffering - not a conspiracy by psychiatrists and pharmaceutical companies to enforce some socially constructed concept of normality. I am concerned that this tendency to trivialize these disorders will simply continue a long history of discrimination — denying those with mental disorders parity for health care, housing, and jobs.

Sorry for the speech, but that must have been what was on my mind when I was talking to the USA Today reporter. For those who do not know the full spectrum of autism, it is important that they know just how disabling this illness can be. Otherwise, we will be left with research and services that are only sufficient for the least affected.

Thanks again for your letter,

Thomas R. Insel, M.D.
Director
National Institute of Mental Health




My response:

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
http://www.neurodiversity.com




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