Rachel Christensen's Case Presentation - ASD Ethical Dilemma

Because I am not currently in a field placement with children, I decided to choose a case that happened at the outpatient center where I work. At the outpatient center where I work, we specialize in providing evaluation and treatment of autism spectrum disorders (ASD), anxiety, ADHD, and other behavioral health difficulties. We see young toddlers all the way up to adults.

So here’s the dilemma. An adult woman came in for a full evaluation to see if her social-communication concerns can be explained by autism. Her 4 year old daughter was diagnosed a year ago with ASD, and since that time, she is seeing a lot of similarities between herself and her daughter. The mom spends a lot of her time worrying about her daughter and her daughter’s diagnosis and whenever she talks about it, she gets very tearful. After a full evaluation with standardized measures, it ends up that the adult woman does not have autism. In fact, it is very obvious that she does not have it, and her concerns are actually clearly explained by Social Anxiety Disorder. When the woman comes in for her final appointment (when we go over the results of the evaluation with her and tell her that she does not have autism), she is unable to find child care and had to bring her daughter along. Both myself and the psychologist providing the mom’s feedback observed and interacted with the daughter. I actually had the opportunity to play with the daughter for almost an hour so that the psychologist could meet with the patient without interruption. Both the psychologist and I have a lot of experience in knowing what to look for with autism, and it was pretty clear to us that this woman’s daughter was not on the spectrum.  

So the question is, when a parent (of a child who has received a diagnosis) is a patient, is it ethical to recommend a reevaluation when you have reason to believe that the child does not meet criteria for that diagnosis? As a professional, is it unethical to withhold this information and these concerns? However, would that be overstepping boundaries to tell her our opinion? Both my supervisor (the psychologist) and I did not know what to do in this case. I’m wondering if we are “obligated” to tell the mother to consider a reevaluation of her daughter, and I’m wondering if it is our place to do so.

Practice knowledge would tell me that doing so could be potentially damaging to our therapeutic relationship with the mother. Technically, this adult woman is our patient, not her daughter. In addition, we would not want to convey that we are trying to “shop for an evaluation”. Also, from clinical experience I’ve observed that after parents hear that their child has been diagnosed on the spectrum, it often takes them a long time to cope and process and adapt. Telling the mom to consider a reevaluation could be reopening a can of worms. However, at the same time, we are definitely concerned for this family. The mother is incredibly distressed that she has a child with autism, when in fact, she may not. The family also is spending a lot of time and resources in providing services for her. This is not to say that the daughter is not having some difficulties, but the services she is receiving need to be a good fit for her if she does not have autism.

Something that came up in our group was the idea of a medical diagnosis vs. a psychiatric diagnosis. Someone (Sherene, I believe) had asked what we would do if we were doctors and withheld information about an underlying medical condition or lack thereof. As parents, we would all probably want to be “in the know”, and would want a doctor to tell us if he or she thought that our child did or did not have a medical condition. I really liked this idea, and completely agree that this case should not be treated much differently. In the end, the mother truly just wants to provide the best care for her child and maybe we should have informed her of our professional opinion.

I really appreciated having time to hear the insight of my peers on this ethical situation. They asked me a lot of different questions and brought up a lot of different concerns that made me think of the case in a new way. Thank you all for listening and sharing your perspectives!