Autism Databases

Last week, I shared my concerns about North Dakota’s mandatory autism database. If you missed it, check out that post and please help us report this unethical law to the Department of Justice.

As I said in the post, I sent my letter to the North Dakota Board, Health Department, and Governor’s office. I later also contacted the North Dakota Psychological Association. The Board confirmed receipt of the letter but has not followed up with any action they are taking or feedback about how I am expected to follow this law and the ethics code at the same time.

I also tagged the American Psychological Association, American Counselors’ Association, and the National Association of Social Workers. I forwarded my letter to APA’s legal department. As I am writing this, I have not heard back from most of them. (Cue an image of the man from Caddyshack saying, “Well? We’re WAITING.”)

The American Psychological Association said they will “look into it” in response to one of my tweets. I asked them to keep me updated. Now, we wait (again).

The Governor’s office did get back to me, and they gave me the name and contact information of the individual in charge of overseeing the database, as well as information about the next legislative cycle (beginning January 2023) when I can request that the state legislature consider repealing this law. I have reached out Kodi Pinks, to the person in charge of the database. I have also told the Governor’s office that I am not able to ethically conduct autism evaluations in North Dakota until this is addressed.

Kodi responded to me and said that they are working on reducing how much data will be collected, and they are forming an advisory council to decide what this should look like. I volunteered to be part of that council – we will see if they are open to the extremely pushy woman being further involved in these decisions.

Change is a marathon, not a sprint. I am not known for my tendency to let things go. I can keep yelling about this for as long as I need to, and I encourage you to yell with me.

You know how you see a light come on in your car and take it to the mechanic for what you think will be a simple fix, and it turns out your entire engine was about to implode? It was brought to my attention that North Dakota is not the only state with a mandatory autism registry. I have not had the time to deep-dive each state’s specific laws, but they seem to vary in how much personal information is required. I for one feel like the only appropriate amount of personal information for the government to require from providers is zero.

If you are a psychologist, clinical social worker, counselor, therapist, et cetera, in the following states, YOUR state has an autism database:

• Delaware
• Indiana
• New Hampshire
• New Jersey
• Rhode Island
• Utah
• West Virginia

You CANNOT ethically practice if you are legally required to report client information to the government based on the client’s diagnosis.

I am told that other states have “voluntary” databases, which I still find problematic, but I am first focusing my efforts on states that require providers to register autistic clients.

I can report each state’s law to the Department of Justice, and I can make noise about all of these states, but that will only go so far. I ask that anyone reading who is licensed to practice in one of these states demand that their licensing board and state organizations lobby to get rid of these registries. If you are not licensed in one of these states, you can still report them to the DOJ demanding they investigate the laws as unethical.

You can use my letter as a template. Copy and paste the parts that fit your needs, and just switch out anything that doesn’t (for example, if you aren’t bound by the APA ethics code, replace my quotes with quotes from your own code).

We have a duty to our clients and our field to demand that these laws be changed. Thank you to everyone who has sent words of encouragement and has already let their voices be heard on this issue.