rights

Losing an autism diagnosis

As a licensed clinical psychologist, I am an active member of the American Psychological Association. Every month I receive a copy of their publication/magazine, Monitor on Psychology. The magazine covers a variety of current topics in psychology, and I enjoy learning about developments in other areas of the field. In April 2019, Monitor on Psychology published an article titled, Losing an autism diagnosis. After reflecting on this article and thinking about what I think it missed, I wrote a response and my remarks were published in the the June issue.

Here is the original response that I emailed to the Monitor on April 10:

I am an APA member and avid reader of the Monitor. My primary specialty as a clinical psychologist focuses on the treatment and assessment of individuals with autism across the lifespan. Two points I would like to make regarding the News Feature on "Losing an Autism Diagnosis" (April 2019).

1. I believe that there is a substantial lack of training in the assessment of individuals with autism, particularly as they age into puberty and adulthood. I think that the lack of oversight at a broader health care level explains some of the variations in having and then later losing an autism spectrum diagnosis. I would refer readers to the work of Cathy Lord's clinical research for a better understanding of the evidence base and training for autism assessment.

2. The consequences of losing an autism diagnosis in adolescence or adulthood can be quite dire and drastic in terms of service eligibility and access. State offices for people with disabilities often require further substantiation of an autism diagnosis later in childhood, and a person losing their autism diagnosis can quite literally "flip the table" on what services a person and their family can access. I think there needs to be more cross-talk between health care and government systems to understand the consequences of losing an autism diagnosis.

I felt like the article failed to touch on how losing an autism diagnosis can adversely impact service eligibility and access. Moreover, it did not speak to disability identity in adults. I also think this piece missed an opportunity to speak more directly to how variations in provider training and experience can impact the reliability and validity of a diagnostic evaluation.

I am grateful to be able to voice this concern to a larger audience and hope that these reflections inform how professionals approach the process of evaluating patients for autism.

Visible Voices Vote

My Better Half shared this article with me on November 6, 2018 (Election Day), and I want to pass it along to others while trying to touch on some of the issues and resources in this article.

I really appreciate the idea and process of supporting all persons with making informed choices and to do so in a way that respects their autonomy as humans and their rights as citizens.

The idea of a social story and anticipatory guidance feels so smart and kind for most adults who are voting for the first time. I think many young adults could benefit from this resource and, as such, I consider it a gift from this mother to have created it for her son and share it.

As I read and re-read the resources in this article, I delved deeper into the Bazelon Center site.

It’s eye-opening and mind-blowing how variable and fraught with ambiguity the law seems to be on the matter of whether individuals with disabilities and mental health concerns can vote. It reminds me, in many ways, of the bar we set before people wishing to become a US citizen.

More specifically, my work often involves talking with families about the topic of guardianship for their children as they transition from adolescence to adulthood. This article gave me cause for pause and added to my understanding about how guardianship determinations could impact a person’s ability to vote later in life or in another state if they so choose to move.

In closing, I would like to encourage folks to share this Know Your Rights resource on voting.