Autism Diagnosis

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.

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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.

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.

World Autism Day 2017

I really enjoy Christmas lights, so much so that I'm one-step removed from Walt Griswold.

While placing candle lights in the window back in November, I decided that I wanted to keep them up through April so that my family and I could Light it up Blue for World Autism Day.

I went to this website to buy candle lights, and I picked up standard bulbs at Home Depot.

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April 2 is World Autism Awareness Day, making this the 10th year of recognition on this day. Initially envisioned to bring greater awareness, the focus now broadens to include acceptance, advocacy, and greater autonomy for individuals on the autism spectrum and their families.

My goal this month is talk more with my kids about people with autism and their families. They each know I work with people with autism, but I want to deepen their understanding in a way that matches their developmental level. I think these shows might be a good start for them.

I'm going to light up my house blue for all of April, and I hope that people who see the lights on at night reflect and respond inclusively for individuals with autism and their families.

I'm a guest blogger

I had an opportunity to write a piece for The Scientific Parent, a website that asks professional experts in their fields to write about parenting topics by presenting scientific facts only, not opinions. They look for specialists in every field - who are also parents - to write in anunbiased, fact based article about their area of expertise. Each piece has an author bio at the end, and I can tell you they vetted me to make sure I fit the criteria to be a guest blogger. The goal of the site is to inform readers and parents on a relevant topic and allow them to draw their own fact-based conclusions to fit their life. The topic is very close to my heart and my work:

What is Autism & When Should Parents Seek A Diagnosis?

When writing this piece, I thought long and hard about every parent I've met who has a child, adolescent, or an adult with autism in their life. I tried to conjure up what I think would be the "key things" to think and do if autism becomes a part of someone's life. I thought first and foremost of Autism as Love. Here is an excerpt and a teaser if you'd like to read more

So, what is autism? That can be a difficult question to succinctly answer. Trying to define Autism feels a bit like trying to describe Love. It goes by a singular name, but its manifestations are so incredibly broad and varied that it defies simple distillation or description. I love my wife, I love my kids, I love my caregivers, and while I call what I feel for each “love,” each love is different. This is a little like what it’s like to define autism.