neurodiversity.net | letter to the congressional autism caucus

I am writing to you in your capacity as a member of the Congressional Autism Caucus. I am a resident of the state of New Hampshire. I hope that you will take the time to read this letter, since I am expressing concerns about the human rights of autistic citizens, concerns not commonly voiced about autism that are applicable to citizens of all states.

I have two teenaged children, one of whom was diagnosed with Asperger Syndrome a little over four years ago. Since that time, my husband and I have recognized autism in members of both sides of our family, and I have come to recognize the extent to which I, too, share in some of its gifts and challenges.

I am grateful to see increased public awareness about autism, and commend you for your commitment to allocating government resources in ways that will help autistic citizens - young and old - and their families. However, I am very concerned about the direction and tenor of many public discussions of the subject of autism.

Research indicates that increased incidence of autism diagnoses is a consequence of growing public and professional awareness and to expanded definitions of autism; regional variations are generally attributable to variations in provision of health, social and educational services. It is also possible that technological, economic and demographic shifts have rewarded autistic citizens with greater opportunities to establish relationships and bear children who share their genetic heritage. Continued research is needed to identify the manner in which pre-natal and post-natal insults affect neurological development. However, although there may be an increase in the incidence of vaccine-related and environmentally-caused neurological damage, research does not support regarding either as the source of a majority of cases of autism. In response to recent findings dismissing hypotheses of a causal connection between thimerosal and autism, there has been a flood of press releases and newspaper articles promoting such extreme and insupportable assertions.

In fact, clinical, historical and biographical accounts indicate that autism is a ubiquitous, enduring part of the human condition, albeit not one that is always welcome or willingly accommodated in society. Research has firmly established a strong, complex genetic component, and has begun to demonstrate the existence of significant structural and functional differences between autistic brains and neurologically typical ones - differences that support enhanced functioning in various domains as well as suboptimal functioning in others.

Along with the increase in recognition of autism in children, there have been corresponding increases in diagnosis of and self-identification by adults, many of whose stories are available in print and online. They have much to teach us about autism, and I think that it's time more people listened to them instead of dismissing their accounts simply because they don't like what they hear, or invalidating their insights simply because they are autistic. For instance, many autistic adults have described how they find eye contact uncomfortable, distressing and counterproductive to comprehension or communication; many have described how rocking or other harmless repetitive acts help to calm their nerves and focus on matters at hand. I believe that we should pay attention to such information so that we do not end up spending a lot of time and effort trying to persuade both autistic children and adults to imitate behavior that is alien and non-functional to them, or to eradicate behavior that is natural and useful to them, for the sole purpose of making it easier for inflexible neurologically typical people to feel comfortable in their presence.

The credibility of autistic citizens, and their ability to function in society and be treated decently, is adversely affected by a prevailing climate of intolerance of difference and fear of disability. Both are perpetuated by crisis-oriented descriptions of autism focusing on abnormality and deficit. Words such as "plague," "epidemic," "tragedy," and "scourge" have no place in civilized public discussion of developmental disability. The same holds true for phrases such as "a life worse than death," "a hollow shell," "prisoners of war," "worse than cancer," and incessant evocations of family suffering at the expense of respect for the fundamental worth of autistic individuals as human beings, regardless of their functional abilities. Such language has come into disturbingly common usage in relation to autism, not only in public expressions of unmitigated distress and disappointment by parents unwilling to come to terms with the permanence of their children's difference, but also in the promotional literature and public service advertisements of organizations dedicated to seeking the total elimination of autism - organizations which generally do not include autistic adults in their governance or service provision.

Language that might be appropriate in a private heart-to-heart conversation with a minister, therapist or friend is hardly appropriate as a public proclamation or rallying cry. Some might argue that such dramatic statements are necessary in order to draw public attention to the needs of families affected by autism, and that it is acceptable to denigrate those who are presumed incapable of understanding that they are being denigrated. Such arguments are unacceptable. No end, no matter how noble it might seem, justifies violating another person's right to freedom from defamation. The consequence of such public self-indulgence is not only to demean individual children, but also to denigrate all others who share the same disability label, including my child. We must find a way to honor the challenges faced by parents of autistic children and simultaneously honor autistic citizens' desire to be free of degrading characterizations of a cognitive difference that many regard as a fundamental element of their identity. Derogatory labeling and panic-ridden descriptions of autism do nothing to enable autistic citizens to function and communicate more effectively; rather, they dehumanize and incite fear towards members of cognitive minorities, in the same way that racist language demeans, dehumanizes and incites fear towards racial minorities.

Dramatic pronouncements of the emotional, financial and social expense of the support of people with disabilities echo the sentiments of Alfred Hoche and Karl Binding. These pre-Third Reich German academics described the life of disabled individuals as "existences that are not only absolutely worthless, but that drag other worthy beings down," and offered intellectual justification for the murder of 80,000 disabled people in 1930's-40's Germany. While I support the right of parents to make their own reproductive decisions, I do not support government funding of endeavors geared primarily towards enabling individuals to selectively abort possibly-autistic fetuses. One must consider such scenarios when considering the ultimate aims of research into genetic markers for autism, especially when the rhetoric surrounding efforts to promote the research abounds with pejorative descriptions of autistic people.

I believe that government-funded autism research should emphasize continued development of effective techniques and technologies to enable autistic citizens to communicate and to learn; development of community housing options and other social supports that can enable them to achieve their potential; exploration of physical and social modifications that can make schools and workplaces more hospitable environments for autistic citizens; and vigorous prosecution of cases of abuse and discrimination. Therapeutic research should focus on complications common to autism such as seizures, remediation of sensory anomalies leading to self-injurious behavior, development of approaches to relieve gastrointestinal malfunctioning, cognitive techniques for anxiety reduction, and other fruitful endeavors geared towards making a positive difference in the daily life of autistic citizens.

In sum, government-funded efforts must emphasize concrete improvement in quality of life for autistic citizens rather than nurture the dangerous fantasy of an autism-free gene pool and elimination of the "non-autistic-person's burden." Autism is not "suffered" but lived by human beings, including my child, my niece, and other people I love. I urge you to be as assertive and outspoken in opposition to demeaning references to autism and, by extension, autistic citizens, as you would be to demeaning references to any other minority group, or any other constituency.

I look forward to your reply, and I thank you for your consideration.

Best regards,
Kathleen Seidel
neurodiversity.net | honoring the variety of human wiring
http://www.neurodiversity.net

Note: The phrase "non-autistic person's burden" was first coined by Michelle Dawson in her open letter to The Hon. Jane Stewart, Canadian Minister of Human Resources Development, .

Autism & Human Rights Letter to Members of the Congressional Autism Caucus

Autism & Human Rights
Letter to Members of the Congressional Autism Caucus