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.

Autism Evaluation Process

April is National Autism Awareness Month, so I wanted to post about topics that relate to the autism aspects of my professional training and practice. One piece that is often not discussed is what actually goes into an autism diagnostic evaluation - for patient and practitioner alike.

I take the process of conducting an autism diagnostic evaluation very seriously. I try to give as much of myself as I can intellectually and emotionally in order to provide patients and families with guidance. My goal is to offer an evaluation that is compassionate, informative, and useful.

These are the measures I routinely use as part of an autism diagnostic evaluation:

• Autism Diagnostic Observation Schedule - Second Edition (ADOS-2) - clinician-administered
• Social Communication Questionnaire (SCQ) - caregiver report
• Social Responsiveness Scale - Second Edition (SRS-2) - caregiver & self-report
• Detailed Developmental History - caregiver report
• Chart Review - pediatric medical records and educational services & assessment history

As outlined above, the diagnostic evaluation is not just me and the patient taking a prescribed set of tests. It is often what I learn in the life narrative that gives me the confidence to proceed with a clear diagnosis and treatment plan. In order to get this information and an accurate health history, I need to talk to caregivers and review pediatric records. This is true for my adult patients seeking a diagnosis as well. While it may seem like a long time ago, childhood behaviors as reported by caregivers give me a fuller picture of the patient's life. 

Beyond the ADOS, I provide anxiety, ADHD, and mood screening Instruments when applicable. An evaluation is so much more than a "Yes" or "No" stamp for a single diagnosis, as it represents a person and a plan to improve their lives based on the challenges they have had and face today.

The inspiration for my wanting to be Ever Better at conducting autism diagnostic evaluations comes from the families I've met along the way. Those who've talked with me about what went well and what they wished could've been different on the day they learned the diagnosis.

I've also found new inspiration and room for growth in working with adults who are seeking a diagnosis later in life. The feelings and dynamics of obtaining a first diagnosis as an adult are something I am learning to navigate with my clients, and I am honored to learn with them.

I am starting to get into a rhythm with scheduling diagnostic evaluations, and I hope to keep receiving referrals for individuals across the lifespan who wonder if they're on the spectrum. In private practice, I am afforded more flexibility in scheduling and administering tests. What this has meant is that patients can get an appointment more quickly and often during "outside of typical office hours" so they can get the answers and help they are seeking more smoothly. 

This April, I'm providing autism diagnostic evaluations on Saturday mornings. So far, I have enjoyed serving new patients in a timely manner - it is very fulfilling for me to get a call from a new referral and be able to serve them within a week or two of their inquiry. Providing answers and helping families better understand their loved ones is one of the most satisfying parts of my work, and I am grateful for the opportunity to serve patients and families in this way.

My very own ADOS kit has arrived!

When does an adult get the chance to spend a ton of money on kid’s toys?  I’ll tell you when…

When they open a private practice and are prepared for ADOS testing on their first day on July 11!

Let me start by first explaining what the ADOS actually is. The formal description is as follows:

The Autism Diagnostic Observation Schedule (ADOS) is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for individuals suspected of having autism or other pervasive developmental disorders.

In a nutshell, the ADOS is a series of structured play and conversation opportunities that aid in determining whether someone meets criteria for autism spectrum disorder. Now the diagnostic process has many more components to it (e.g., a caregiver interview, review of educational records), but getting down on the floor with kids and interacting with them face to face is one of my favorite aspects of my job. To accurately and comprehensively diagnosis Autism, researchers standardized the “play” components so that each person receives relatively similar social opportunities. This test arrives in the form of paperwork protocols and a giant box-o-toys. My new office mates at the practice on East Avenue were shocked when a huge, heavy cardboard box arrived in the waiting room one morning. The box was big enough to hold a love seat, specifically this one. I had a great time unpacking and organizing the contents. For those of you who know how much I love organizing and sorting things, this was its own reward...

These are the materials for the ADOS for older children, adolescents, and adults.

These are the materials for the ADOS for toddlers and young children.

I have been administering the ADOS for many years and received great clinical training on how to interpret the results of this assessment as part of my graduate and post-doctoral training. Today marks an important day for me because now I get my very own set of toys that I get to share with my patients and their families at both of my office locations.

One added bonus is the shipping box:

It was so huge I brought it home to make a play house – talk about a great investment. 

A new home for favorite toys. Note the Dinotrux "bad guys" figures stored in the back of a garbage truck.