Comedian Amy Schumer brings awareness to Autism Spectrum Disorder
Amy Schumer’s husband, Chris Fischer, has Autism Spectrum Disorder. Amy recently discussed his diagnosis in her Netflix Special entitled “Growing.” This was kind of a big deal in the media, but why?
"My husband was diagnosed with what used to be called Asperger's. He has autism spectrum disorder. He's on the spectrum. And there were some signs early on." – Amy Schumer.
First off, what is Autism?
Autism is technically called an Autism Spectrum Disorder (ASD). ASD is a developmental condition characterized by three main areas: delays in communication, repetitive behaviors, and difficulty with social skills. Many (but not all) children with ASD under two years of age have hallmark signs that include1:
Limited smiling or joyful expressions
Limited verbal speech or nonverbal communication (such as pointing)
Limited eye contact
Repetitive behaviors (such as hand flapping, rocking, spinning)
Intense interests in certain topics (such as TV shows, objects, facts, video games)
Difficulty with changing schedules or routine
Autism is known as a “spectrum” because there are different levels of severity and different ways the symptoms of ASD show themselves in different people.
How do you test for Autism?
There are two steps in the process of testing for ASD. The first step includes parent report of their child’s development and behavior, while the second part is clinician (doctor) assessment of the child’s developmental progress and behavior. This means ASD is a “clinical” diagnosis and cannot be done through biochemical or genetic (blood or spit/swab sample) testing.
Step 1 (screen): The American Academy of Pediatrics2 recommends all children be screened for ASD at their well child checks with their primary care provider. The screens for ASD are usually done at 18- and 24-month well child checks. There are different tools doctors and parents can use to screen children for ASD, including:
MCHAT: “Modified Checklist for Autism in Toddlers”
ASQ: “Ages and Stages Questionnaire”
STAT: “Screening Tool for Autism in Toddlers and Young Children”
PEDS: “Parents’ Evaluation of Developmental Status”
*Please note there are validated age ranges for each of the questionnaires – be sure your child is within the rage for the questionnaire you use. Please talk to your child’s primary care provider if you have any questions or concerns about these screening tools.
Step 2 (diagnostic evaluation): If the initial screen (step #1) shows concern for ASD, the child should be referred for a diagnostic evaluation (step #2). The diagnostic evaluation is usually done by a specialized medical professional, such as a Developmental Pediatrician, Neuropsychologists, or Psychiatrists. The tools these specialists use to diagnose ASD include:
ADOS: “Autism Diagnostic Observation Schedule”
CARS: “Childhood Autism Rating Scale”
ADI-R: “Autism Diagnostic Interview – Revised”
GARS-2: “Gilliam Autism Rating Scale, Second Edition”
The Fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)3 is the official guideline currently used by medical providers to diagnose ASD and the level of ASD. The DSM-5 follows the general criteria needed for an ASD diagnosis, as outlined above (such as delays in communication, restrictive/repetitive behaviors, and social delays) but in much finer detail. This also allows the clinician to assign severity levels of ASD (for example, level 1 are those “requiring support” while level 3 are those “requiring very substantial support” with severe impairments in functioning).
Why is ASD terminology so important?
Discussion of the DSM-5 criteria for a diagnosis of ASD leads us to the point about terminology used to describe someone with ASD. The DSM has gone through five revisions and during the most recent revision, the terminology used to describe someone with ASD was changed to be more accurate and medically useful.
In previous versions of the DSM, individuals with “autism” could be diagnosed with Autistic disorder, Asperger’s syndrome, Childhood Disintegrative disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)4. Since these four conditions exist on a spectrum under the “autism” umbrella and have the same treatment/therapy recommendations, the DSM-5 collectively calls them Autism Spectrum Disorder (ASD).
What other diagnoses may be seen with ASD?
Attention Deficit-Hyperactivity Disorder (ADHD) has been reported in 30–80% of individuals with ASD, and ASD has been reported in 20–50% of individuals with ADHD.6 This overlap is probably due to minor symptom overlap between ASD and ADHD, but also genetic factors and neurocognitive pathways. ADHD is not currently considered “on the spectrum” of ASD, but rather a co-occurring behavioral diagnosis.
Another common co-symptom is dyspraxia. Dyspraxia is caused by the way the brain processes information, resulting in decreased motor planning and coordination. Individuals with ASD have reported significantly more motor coordination difficulties than individuals without ASD.7 This decrease in motor control may then affect how the individual with ASD processes and interacts with their surroundings
Why does a diagnosis of ASD matter?
Amy Schumer discusses this in her interview on Late Night with Seth Meyers (published 03/21/2019 on YouTube): “I think a lot of people resist getting diagnosed and even some of their children, [because] of the stigma that comes along with it. But you’re not just diagnosed, and then they throw you out...The tools that we’ve been given have made his life so much better and our marriage and our life more manageable. I just wanted to encourage people to not be afraid of the stigma…I think there are a lot of people with autism who go undiagnosed, when I think their life could be better if they got those tools.”
Per the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), Autism spectrum disorder (ASD) is the clinical diagnosis term used to describe people who were previously diagnosed as having Autistic disorder, Asperger’s syndrome, Childhood Disintegrative disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).
ASD is used to describe individuals who have, at least, delays in communication, repetitive behaviors, and difficulty with social skills. Other neurologic, developmental, and behavioral symptoms are known to co-occur (and overlap) with ASD, such as ADD/ADHD and dyspraxia.
Parents and primary care providers can screen children as young as 16 months to 2 years for signs of ASD using tools such as the MCHAT. However, an official diagnosis of ASD is made through a clinical evaluation by a trained medical professional (such as a Developmental Pediatrician)
Genetic testing is available to determine if there is an underlying (identifiable) cause for ASD, which may change management recommendations, and provide recurrence risk information for the family.
Amy Schumer has brought attention to ASD, appropriate terminology of ASD, and the importance of receiving a diagnosis for management.
U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Mental Health. 2018. NIMH Autism Spectrum Disorder. Retrieved from: https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml
American Academy of Pediatrics. Retrieved from: https://www.aap.org/en-us/Pages/Default.aspx
American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.