Parents Speak: The Art of Love
and the Ethics of Care
Disability studies in the university emerged from the disability rights movement of the 1970s and 1980s. Conversations about autism are inevitably also about issues that have occupied both scholars and activists. They range from philosophical questions about defining disability and the ethics of treatment to policies regarding access to health care and living supports, deinstitutionalization and patient’s rights, the Individuals with Disabilities Education Act (IDEA), and inclusive education.
A history of autism focused specifically on parental experience and knowledge cannot hope to incorporate all the lessons that disability studies teaches us, in particular, that we take seriously the accounts of people with disabilities themselves. As I mentioned in the introduction, there are many women and men with autism diagnoses who are capable spokespeople. A number of them are passionate advocates of neurodiversity, the concept of accepting and accommodating atypical cognitive styles and personality types as valuable elements of human difference.1 Advocates insist on the importance of respecting the desires of the person with the disability, first and foremost, in policies and treatments directed at them, a position best expressed in the imperative “nothing about us without us.”2
Many draw on their experience of autism to question not only policies but also psychiatrists’ assumptions, maintaining, for example, that the diagnostic distinction between “low” and “high-functioning” autism is specious. This segmentation fails to acknowledge the range of strengths and weaknesses of any individual. Dividing the autism spectrum, needless to say, divides people. Self-advocates reject the claim that those able to communicate and live without assistance are not qualified to weigh in