mental health

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.

Remembering my Mentor

Tris Smith was the greatest combination of intelligence and kindness I have ever known.

The distinction is one he won in my heart without my knowing and secured in my mind as he mentored me toward my dissertation. He listened to my cynicism and endured my self-doubt, giving me hope and confidence at a time when I lacked it and sorely needed it.

Today marks 1 year since his passing.

TrisPodium.png

Much has been written and said about Tris’ contributions to the field of psychology and his care for those in it – both patients and providers – so I will not belabor a point better made by others.

Tris examined the impact of early intensive behavioral intervention for young children with autism spectrum disorder. This work began about 15 years ago and a follow-up study recently looked at how these children are now faring as adolescents and adults.

The clinical research Tris led lives and breathes still. 

Participants who were once children in these studies are now adolescents and adults, and I have had the fortune of knowing a few of these people as patients. I know that much of their progress is due to their own hard work and that of their families’, but I often think of Tris and his belief in scientific progress when I meet with them. I see the impact of his work every day.

During my training, Tris gave me the opportunity to work on a clinical study that focused on helping parents and caregivers learn strategies to support their young children with autism. This experience has shaped how I work with families and led me to adopt an approach that generally insists on getting to know parents as well as their children as part of helping the family as a whole.

Tris gave so much that it’s hard to imagine anyone filling the space his absence leaves. On learning of his passing last year, I shared a few words with others. I share them again here:

It is beyond my ability to summarize his intellectual contribution to the field of autism research. He studied under Ivar Lovaas as part of the initial group of researchers at UCLA who used the scientific method and randomized clinical trials to quite literally prove that therapy could help improve the lives of children with autism. He expanded on this research at the University of Rochester Medical Center and showed further how parents could learn strategies to improve the behavior of their children with autism in home and community settings. His more recent research reached directly into school districts and minority communities.

His contributions to the field of autism research are innumerable and incalculable. The work he led and supported will ripple out for many years after his passing. Tris was on my dissertation committee and the person I most credit with my being able to defend my dissertation. He was a consummate mentor. He was a mensch and will remain a saint to those who knew him well.

Three Years In

Today marks the anniversary of when the practice first opened on July 11, 2016.

In this time I have had the privileged to serve so many amazing people, get to know wonderful families, and help people through life’s challenges big and small. As I reflect on all of the things that have happened over the last three year my most overwhelming feeling is gratitude…

Gratitude to have a job that I love going to each and every single day.

Gratitude to have a career that offers flexibility to be a present parent and partner.

Gratitude to have a business that supports and works with our community.

Gratitude to be in a community that creates services to meet community needs.

Gratitude for YOU for supporting my dream to help people in our community.

In the last three years, so many things have changed. I’ve practiced in three different locations before landing in my forever home in January 2019. I started out as one person in 2016 and today we are in the process of hiring talented therapists to join me in serving our community.

In 2016, I planned on focusing primarily on weekly therapy. Between then and now, I have had opportunities to use my skills for educational evaluations and advocacy; helping patients obtain OPWDD services; testifying in federal court as an expert witness; and working with different school districts to provide social skills for students with developmental differences.

In the last three years, a lot has also remained the same. I’m still committed to serving every patient and family to the best of my ability. I’ve kept the quirky even as I have moved and upgraded my office location. Patients and their families have gifted me sentimental tokens - Lego mini-figures and socks. These mementos have traveled with me and bring a smile when an unsuspecting character is spotted in an otherwise professional looking office.

The traditional gift for a 3rd Anniversary is leather, so My Better Half recently upgraded the chair I sit in to a new leather one. Feels like I have celebrating covered even while sitting.

New office, new chair, but I still wear goofy socks everyday. Today is fox socks.

New office, new chair, but I still wear goofy socks everyday. Today is fox socks.

Thank you for believing in and supporting my dream. That is the greatest gift of them all.









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.

Fire Away

 

I began writing this post in February of 2017 with the idea that I would post it during national suicide prevention awareness month in September of 2017. Then 13 Reasons Why happened.

This is what I wrote back in February of 2017 when this topic was foremost in my mind:

Suicide is the second leading cause of death among teenagers. Ahead of homicide and behind accidents, suicide accounts for approximately 8.7 deaths per 100,000 as of 2014. As of this writing, suicide remains the 10th leading cause of death in the United States.

This is unacceptable. And we all know it.

This sickens and angers me beyond all recognition because we could prevent and detect it better with more well-integrated physical and mental health care. Specific segments of society are at even greater risk for suicide: Native AmericansLGBTQ, and individuals with disabilities.

This is what I write now after having watched 13 Reasons Why all the way through three times.

I am going to write this as a consumer of art, as a father, and as a mental health provider.

Things I thought the series did well in the service of addressing suicide risk factors:

  • Portraying slut-shaming and sexual assault as risk factors for suicide

  • Elaboration of the "bro-code" dynamic that encourages the bystander effect

  • Pro-social presentation of consent (during Hannah's interaction with Clay)

  • Range of issues that can lead to adolescents being bullied or ostracized

  • Hyper-acceleration of comparison and degradation via social media platforms

Things I thought the series insinuated but did not do well to follow through on:

Things I thought the series failed at articulating in a coherent manner:

  • Presentation of topics without trigger warnings and access to resources

    • I recognize that they added these later. A day late and a dollar short. I am a staunch proponent of free speech, but the creators of this show owed the viewers (particularly younger ones) access to content to support their reaction to it.

  • Presentation of conflicting roles for the school counselor as normative

    • I recognize that mental health providers are fallible and human. However, the lack of skill and empathy as described here in Mr. Porter’s Mistake is inexcusable.

  • Woefully inadequate and inept suicide risk assessment on multiple levels

After the show received quite a bit of critical acclaim and consternation, they added in some of the things I referenced here in my thinking and writing back when 13 Reasons Why was originally released.

The best defense is a good offense.

We need to go on the offensive by doing everything we can to prevent suicide today. There are so many direct and immediate ways that people can involved with suicide prevention efforts:

  • Reading and Sharing Resources: https://www.nami.org/suicideawarenessmonth

  • Joining or Supporting a Walk Team: https://afsp.donordrive.com/index.cfm?

  • Learning and Knowing the Signs: http://www.suicideispreventable.org/

  • Connecting with Professionals: http://www.gvpa.net/event-2018-10-12.asp

At the end of the day, there is no good reason for how or why someone takes their own life.

TALK SAVES LIVES

This song and music video by Chris Stapleton radically captures the experience of suicide.

Know the Five Signs of emotional suffering. Visit www.changedirection.org.