UPDATE: Kodi Pinks emailed me back regarding my question about going through medical records to determine whether people were being diagnosed with autism but not registered. According to Kodi: “As to your question about whether the department is going into people’s medical records to determine reporting compliance; I can assure you that this is not being done.” So that’s good!
(Hello new friends! If it’s your first time joining me, I have been trying to repeal a North Dakota law mandating that providers register autistic clients with the government. Information on the law is available here. More information about these kinds of databases is available here, and my journey raging against these databases is here.)
First of all, I want to thank the people at the North Dakota Psychological Association. They didn’t immediately get back to me because there was an issue with the contact form on their website, so they had no idea I was reaching out. When I reached out by phone, they got back to me within hours and validated my ethical concerns. They also forwarded my concerns to all members of the NDPA, and I have spoken with other practicing psychologists. The people I spoke with asked me not to put their names in this post, so I am honoring that request. Here is what I have learned.
- The database was started after the parent of an autistic child became concerned that pesticides were causing higher autism rates in North Dakota compared to other states, and they wanted to determine whether this is true.
- No, autism is not caused by pesticides. No, North Dakota does not have a higher rate of autism than other states. Yes, this was tested and debunked.
- The data collected for the database has not been updated since 2017. So they are collecting this information and…sitting on it? Not sure how this is helpful for anyone.
- The database has not led to an increase in services or support for autistic people in North Dakota.
- North Dakota taxpayers are footing the bill of approximately $1,000,000 a year to keep this going (I have not been able to confirm the number). Are you a North Dakota resident? Do you want your money going to this? No? Call your reps!
- Providers were outraged when the law was originally proposed and testified against it. The government did not listen and passed it anyway. Many are refusing to comply but feeling hopeless about overturning it because they have been shut down at every avenue so far.
- As far as I can tell, no one has lost their license or been fined for refusing to comply with the law…so far.
- This is the big one. I saved it for last so it would stand out. Because providers are not complying, the Health Department has started going through people’s medical records to determine who has been diagnosed with autism but not reported to the database.
Yes, the North Dakota government is requesting medical records through hospital systems to identify autistic folks who were not reported to the database. On top of being a disgusting and inappropriate overreach towards autistic people, this means they are going into everyone else’s medical records as well.
One psychologist I spoke with asked about this at a meeting of the Governor’s autism task force (I’m still not sure why the governor has an autism task force), and the response was reassurance that this is completely legal.
Do you live in North Dakota? Do you want the government to not go through your medical records? Call your reps!
Questions and concerns about the Autism Database, Autism Task Force, and privacy of medical data are to be directed to Kodi Pinks, per this letter. After you get off the phone with your reps, reach out to Kodi with your concerns.
That is the information that I have so far. I am continuing to work with other psychologists as well as a couple of legislators to see what we can do about overturning this law, but I am concerned that this is not a strictly North Dakota issue. For true protection against this kind of government overreach, we need federal protection to take down similar databases in other states and prevent other states from implementing a similar law. More updates on that later.
Thank you to everyone who has reached out with words of encouragement, reported the database, and made noise about this. It is definitely a marathon, not a sprint.