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  • Writer's pictureAmy Duffy-Barnes

The Unsettling Reality of Mandatory Autism Databases


Autistic person not wanting to be forced into an autism database by a government entity.

I recently took a trip to Maui where a scuba lesson went wrong and the instructor became upset with me, telling me I shouldn’t give up, that I needed to trust him, and if I just stayed under water everything would be okay. Being autistic I have learned that I need to trust myself and respect my sensory issues. The pressure on my lungs was intense and it was causing anxiety. Combine that with interoception and proprioception issues and I firgured my chances of drowning were higher than I was comfortable wish. Why did this guy have beginning, uncertified divers in 12 feet of water? I told the instructor that I was autistic and I knew my limits. He then became upset and stated that I had no business signing up for lessons and not telling him I was autistic. He said I violated the spirit of Aloha and that I shouldn’t be scuba diving. I told him that he could judge me for not telling him I was autistic after he walked a lifetime in my shoes, my disabled, autistic shoes. Mask and be respected and accepted or unmask and be treated with apprehension, condescension or discrimination and possibly be denied scuba lessons. I believe ableism also probably violates the spirit of aloha. This incident reminded me of why I haven’t told my doctor I am autistic (although I do splash it all over the internet) and how I fear things like mandatory autism registries. What if they come to my state? What if the days of fascism return and they round us up again? I think it is important for autistic people to know these data bases exist and to be aware of the potential negative implications of being put on one.


States with Mandatory Autism Registries

Currently, there are eight states in the U.S. that require mental health professionals and physicians to register autistic clients with the state. These states include:

  1. Delaware

  2. Indiana

  3. New Hampshire

  4. New Jersey

  5. North Dakota

  6. Rhode Island

  7. Utah

  8. West Virginia

The registries in these states are compulsory, and various state laws permit the imposition of fines, disciplinary actions, or even the revocation of licenses for providers who fail to report their autistic clients.

The Issue at Stake

The obligatory autism databases represent a grave violation of human rights and ethics. They mandate the disclosure of identifying information about autistic individuals, thereby violating their right to privacy and confidentiality. Furthermore, such databases set a dangerous precedent for documenting individuals based on a diagnosis from the Diagnostic and Statistical Manual of Mental Disorders (DSM) and conducting human subjects research without consent.

The Ethical Dilemma

Ethical codes from various professional bodies, including the American Psychological Association (APA) and the National Association for Social Workers (NASW), emphasize the importance of maintaining client confidentiality and obtaining informed consent for research. These codes prohibit the violation of confidentiality unless the safety of the client or another individual is at risk. The mandatory autism databases, however, directly conflict with these principles.

The Infringement of Human Rights

The obligatory autism databases also violate international human rights law. The International Covenant on Civil and Political Rights states, "no one shall be subjected without his free consent to medical or scientific experimentation." Mandating that autistic individuals be included in research without their consent infringes on their human rights.

Call to Action

Given the existence of these databases in multiple states, federal-level action is necessary to shut them down. Organizations like the American Civil Liberties Union (ACLU) possess the power to challenge these databases in court and bring about their closure. In the last several years there have been petitions launched, demanding the removal of these unethical and illegal databases. Although no corrective action has come from them as far as I am aware of.

The Eugenics Angle

Some critics argue that these registries and policies hark back to the dark days of eugenics, a set of beliefs and practices aimed at improving the genetic quality of the human population. These critics express concerns that such databases could lead to discrimination, stigmatization, and other forms of harm to the autistic community. During the Covid Pandemic DNR orders were placed on disabled patients in the UK and that was frightening to many in the autistic community.

Conclusion

The existence of mandatory autism databases represents a significant ethical and human rights concern. It's critical for individuals, communities, and organizations to stand up against such practices and advocate for the rights and dignities of autistic individuals. As we continue to work towards a society that respects and values all its members, it's crucial to challenge and rectify policies that infringe upon the rights of any community, including the neurodivergent.

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