I am writing today’s post to provide some information for clients and potential clients about my practice.
If you have reviewed RMH Therapy’s website, you will see that one of my areas of specialization is supporting autistic people, including evaluating for, diagnosing, and identifying autism in both children and adults. I take a neurodiversity-affirming approach to my practice, and I believe that although many autistic people experience difficulties, autism is not something to “fix” or “cure.”
That being said, many autistic people benefit from supports and services, and part of my job is helping people access resources that can help them have their best life (whatever that means to them individually).
When I applied for licensure in North Dakota, I learned that the state has a mandated reporting law for autism diagnoses. Basically, when a provider diagnoses someone with autism, they are required by law to complete a form and submit it to the state Health Department. This form includes detailed personal information about the autistic individual and their immediate family. They claim it’s for research and to make resources more accessible. I have spoken with parents, providers, and autistic folks in North Dakota, and all have said they have not been able to get information about what research is being done with this information or seen evidence that the database has increased access to support or care.
Other states have similar databases. However, I am told that some of these databases only include anonymous information that is actually used to help autistic people. (For example, a parent shared with me that their state uses data about the total number of autism diagnoses made each year to free up funds to help pay for occupational therapy or provide classroom accommodations.) There are also other states that have databases like the one in North Dakota.
I have reached out to the Department of Justice about this law and have not heard back. I have reached out to the Civil Rights Office and been told that this is not illegal. I have reached out to the North Dakota Board who oversees my license and have not gotten a response. I have reached out to the American Psychological Association and been told they will get back to me (back in December 2021, I believe). I have reached out to state representatives and gotten some feedback, but since I am not a voter in North Dakota, it is very difficult for me to make progress that way.
According to the Health Department, if I fail to register clients, I can be fined $1,000 per incident and risk losing my license. According to my ethics code, I cannot violate client confidentiality under these circumstances.
This puts me in a Catch-22. I cannot ethically follow this law, and I cannot afford to risk my license and pay $1,000 for each client who comes to me for an autism evaluation.
Until this law is repealed or the database is changed to only include de-identified data, I unfortunately cannot and will not provide evaluations for autism in North Dakota. I simply will not put my clients in the position where they are on a government list based on their diagnosis.
If you have followed me for a while, you have seen me address North Dakota’s autism registry in the past. More information about my attempts to get this practice shut down is available here, along with information about what you can do to fight this with me.