Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

The difficulty in diagnosing autism: Feeling like judge and jury

Lisa Shulman, MD
Conditions
March 20, 2014
151 Shares
Share
Tweet
Share

I recently fulfilled my civic responsibility by completing a stint on jury duty. Somehow I had never previously been summoned. Being the Law & Order junkie that I am, I was kind of awestruck by my first up-close exposure to the court system.

I sat erect and at attention in the courtroom, listening to the judge charge us prospective jurors. I even became slightly teary when he spoke of the important role we were playing in assuring the defendant of his right to determination of guilt or innocence by a jury of his peers.

The judge went on to tell us that we would hear testimony from the two opposing sides, and I watched the jury selection process play out with the elimination of candidates whom one side or the other thought might be inclined to have certain biases.

At some point, I found myself thinking that this process reminded me of something more than TV…. What was it? I finally figured it out. Diagnosing autism.

I have spent the past 23 years as a developmental pediatrician at Einstein’s Children’s Evaluation and Rehabilitation Center, with a focus on autism for the past 17 years. Over the last decade I have been on the front line of an epidemic of autism concern.

Through these years, I have personally been involved in the diagnosis and management of about 700 children with autism, and over recent years, I have offered the opinion that a large and growing number of children referred for possible autism do not warrant that diagnosis. To make matters even more complex, the definition of autism has changed three times during my professional career.

The reason the jury system comes to mind is that to date, there is no blood test for autism, no confirmatory MRI findings or positive culture of any bodily fluids. No hair analysis for mercury, or stool sample for yeast, will confirm or rule out this diagnosis. The diagnosis of autism remains a “judgment call” made after gathering all of the relevant data, including “testimony” of all those who spend time with the child, and then organizing those data for a determination of whether the sum of its components  supports or goes against the diagnosis of autism.

I am the “jury” in this process.

Sometimes, the child in question has every feature of autism; the diagnosis is clear, and no judgment call is really needed. A jury of 12 autism experts would need to deliberate but a moment in order to render its unanimous opinion.

Other times, the process may lead to a “hung jury” of diagnosticians. In a certain percentage of cases where families seek an evaluation at a specialty center such as ours, the families have sought previous diagnostic feedback. They may be seeking from us a second, third or even fourth opinion. Families have been known to arrive with suitcases of prior evaluations in tow; they have brought three-ring binders, with color-coded section dividers separating the multiple prior evaluations and opinions.

Alternatively, and not infrequently, families have denied any previous evaluations — for fear that we would be influenced by their opinions and they would then not truly receive a new opinion — only to have it later come to light that previous evaluations had been carried out, yielding a diagnostic formulation on one side or the other.

The rationale for how a multidisciplinary evaluation arrives at a valid diagnostic formulation for a complex clinical scenario such as autism is at its core quite similar to the rationale behind a jury looking at evidence to determine a defendant’s guilt or innocence.

In a multidisciplinary team, a complex child is seen by several specialists with differing expertise — for example, a developmental pediatrician, a psychologist and a speech and language pathologist. Each specialist uses different instruments specific to his or her discipline to make observations relevant to the diagnosis of autism, and carries out standardized testing delineating the child’s pattern of strengths and weaknesses. In borderline situations, the child may undergo the Autism Diagnostic Observation Schedule, an instrument considered the gold standard; it attempts to clarify the features of autism through a structured, videotaped play-based assessment.

Following the completion of all of the evaluations, a team conference is held and each clinician shares her or his impressions of the child. The hope is that a valid diagnostic formulation will emerge through the differing but overlapping professional expertise and multiple points of observation.

Most times, the team process leads to a consensus and a particular diagnosis is offered with surety. But sometimes, it is impossible to pull it all together. For example, two clinicians may feel that the child meets the criteria for autism and two may not. The team is “hung.”

In the conference later held with the family, in such cases, I often find myself explaining that the child has language delays and social weaknesses, but in determining whether the child meets the criteria for autism, “the jury is still out.” I often go on to say, “If you get 10 opinions (but please don’t) from experienced clinicians, five will say yes and five no.” And yes — the discussion usually relies on courtroom analogies.

But this is where the systems differ. Children at risk of autism are rarely sent home on a technicality. Double jeopardy never applies. The family members must contend with life in the diagnostic gray zone. Rather than having them use their energies and resources to seek yet another opinion (an “appeal”), we urge them in this circumstance to put the issue of autism diagnosis on the back burner and concentrate on the needed treatment.

Generally, time will tell whether the social impairment significantly affects the child’s functioning and therefore is consistent with a diagnosis of autism. In the meantime, the child will receive intervention targeting his or her areas of weakness and giving the child the greatest likelihood of the best outcome.

When I render this diagnostic judgment, I often feel like both judge and jury, while my little patient and his or her parents rise at the defendant’s table awaiting my verdict. I strive to be “fair-minded” and “just,” but with a hefty measure of hope.

Inevitably, I picture the child and his or her loving family’s future hanging in the balance on the scales of justice — only everyone is innocent in this court.

Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.

Prev

Is Match Day outdated?

March 19, 2014 Kevin 15
…
Next

This is why doctors practice cover your ass medicine

March 20, 2014 Kevin 208
…

Tagged as: Neurology, Pediatrics

Post navigation

< Previous Post
Is Match Day outdated?
Next Post >
This is why doctors practice cover your ass medicine

More by Lisa Shulman, MD

  • Pediatricians should listen to parents. Here’s why.

    Lisa Shulman, MD
  • a desk with keyboard and ipad with the kevinmd logo

    New hope for those diagnosed with autism

    Lisa Shulman, MD
  • a desk with keyboard and ipad with the kevinmd logo

    After an autism diagnosis: A new parental role

    Lisa Shulman, MD

Related Posts

  • Don’t judge when trainees use dating apps in the hospital

    Austin Perlmutter, MD
  • Don’t worry, medical students don’t judge

    Nathaniel Fleming
  • Patients with severe autism: medical and dental care in the community

    Irene Tanzman
  • It’s always easier to judge someone’s failures from higher ground

    Michael Kirsch, MD
  • Our doctors are feeling the emotional burden of the state of health care

    Michele Luckenbaugh

More in Conditions

  • The surprising medical mystery of a “good” Hitler: How a rescued kitten revealed a rare movement disorder

    Teresella Gondolo, MD
  • The power of coaching for physicians: transforming thoughts, changing lives

    Kim Downey, PT
  • Unlocking the secrets of cancer conferences: an end-of-life counselor’s journey among pharmaceutical giants

    Althea Halchuck, EJD
  • An obstetrician-gynecologist reveals the truth about reproductive planning and how to navigate society’s expectations

    Yuliya Malayev, DO, MPH
  • Nose-brain connection: The surprising link between allergies and mental health revealed

    Kara Wada, MD
  • Is the rise in mental illness due to greater awareness or a true increase in incidence?

    Zahid Awan, MD
  • Most Popular

  • Past Week

    • How chronic illness and disability are portrayed in media and the importance of daily choices for improved quality of life

      Juliet Morgan and Meghan Jobson | Physician
    • The hidden factor in physician burnout: How the climate crisis is contributing to the erosion of well-being

      Elizabeth Cerceo, MD | Physician
    • Why affirmative action is crucial for health equity and social justice in medicine

      Katrina Gipson, MD, MPH | Policy
    • The power of coaching for physicians: transforming thoughts, changing lives

      Kim Downey, PT | Conditions
    • A patient’s perspective on the diminishing relationship between doctors and patients

      Michele Luckenbaugh | Conditions
    • Emulating Michael Jordan’s winning mindset: a path to success for health care professionals and entrepreneurs

      Harvey Castro, MD, MBA | Physician
  • Past 6 Months

    • The growing threat to transgender health care: implications for patients, providers, and trainees

      Carson Hartlage | Policy
    • It’s time to replace the 0 to 10 pain intensity scale with a better measure

      Mark Sullivan, MD and Jane Ballantyne, MD | Conditions
    • “Is your surgeon really skilled? The hidden threat to public safety in medicine.

      Gene Uzawa Dorio, MD | Physician
    • Breaking point: the 5 reasons American doctors are dreaming of walking away from medicine

      Amol Shrikhande, MD | Physician
    • Breaking the cycle of racism in health care: a call for anti-racist action

      Tomi Mitchell, MD | Policy
    • Revolutionize your practice: the value-based care model that reduces physician burnout

      Chandravadan Patel, MD | Physician
  • Recent Posts

    • The pros and cons of taking a gap year during medical school

      Med School Insiders | Education, Sponsored
    • A family physician’s journey on the OIG list and the struggle to return to practice [PODCAST]

      The Podcast by KevinMD | Podcast
    • Heartwarming stories of cancer patients teaching us about life and the human spirit

      Johnathan Yao, MD, MPH | Physician
    • We need a new Hippocratic Oath that puts patient autonomy first

      Jeffrey A. Singer, MD | Physician
    • The meaning of death in medicine: the role of compassionate care in end-of-life patient care

      Ton La, Jr., MD, JD | Physician
    • From skydiving to saving lives: a surgeon’s journey on adversity, passion, and perseverance [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

Leave a Comment

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

CME Spotlights

From MedPage Today

Latest News

  • Clinical Challenges: Test Your Knowledge of Dry Eye Disease
  • Clinical Challenges: Meibomian Gland Dysfunction Underdiagnosed and Undertreated
  • Best Exercise Time; FDA's Diabetes Guidance; Weight Discrimination Illegal in N.Y.C.
  • 10 Asian Americans in Healthcare Worth Following on TikTok
  • New Model Aims to Study Intestinal Fibrosis in Crohn's Disease

Meeting Coverage

  • New Model Aims to Study Intestinal Fibrosis in Crohn's Disease
  • Hypertension Tied to Worse Survival After Surgery for Upper Tract Urothelial Cancers
  • The Role of Amyloid PET in the Management of Alzheimer's Disease
  • New Inflammation Inhibitor Proves Effective and Safe for Dry Eye Disease
  • No Access to Routine Healthcare Biggest Barrier to HPV Vaccination
  • Most Popular

  • Past Week

    • How chronic illness and disability are portrayed in media and the importance of daily choices for improved quality of life

      Juliet Morgan and Meghan Jobson | Physician
    • The hidden factor in physician burnout: How the climate crisis is contributing to the erosion of well-being

      Elizabeth Cerceo, MD | Physician
    • Why affirmative action is crucial for health equity and social justice in medicine

      Katrina Gipson, MD, MPH | Policy
    • The power of coaching for physicians: transforming thoughts, changing lives

      Kim Downey, PT | Conditions
    • A patient’s perspective on the diminishing relationship between doctors and patients

      Michele Luckenbaugh | Conditions
    • Emulating Michael Jordan’s winning mindset: a path to success for health care professionals and entrepreneurs

      Harvey Castro, MD, MBA | Physician
  • Past 6 Months

    • The growing threat to transgender health care: implications for patients, providers, and trainees

      Carson Hartlage | Policy
    • It’s time to replace the 0 to 10 pain intensity scale with a better measure

      Mark Sullivan, MD and Jane Ballantyne, MD | Conditions
    • “Is your surgeon really skilled? The hidden threat to public safety in medicine.

      Gene Uzawa Dorio, MD | Physician
    • Breaking point: the 5 reasons American doctors are dreaming of walking away from medicine

      Amol Shrikhande, MD | Physician
    • Breaking the cycle of racism in health care: a call for anti-racist action

      Tomi Mitchell, MD | Policy
    • Revolutionize your practice: the value-based care model that reduces physician burnout

      Chandravadan Patel, MD | Physician
  • Recent Posts

    • The pros and cons of taking a gap year during medical school

      Med School Insiders | Education, Sponsored
    • A family physician’s journey on the OIG list and the struggle to return to practice [PODCAST]

      The Podcast by KevinMD | Podcast
    • Heartwarming stories of cancer patients teaching us about life and the human spirit

      Johnathan Yao, MD, MPH | Physician
    • We need a new Hippocratic Oath that puts patient autonomy first

      Jeffrey A. Singer, MD | Physician
    • The meaning of death in medicine: the role of compassionate care in end-of-life patient care

      Ton La, Jr., MD, JD | Physician
    • From skydiving to saving lives: a surgeon’s journey on adversity, passion, and perseverance [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Leave a Comment

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...