Autism spectrum disorder is a neurological disorder that affects the brain’s development of social and communication skills. As research of developmental disabilities advances, studies are now showing that people with Down syndrome are more likely to have autism than their neurotypical peers. When a person is diagnosed with both Down syndrome and autism, that person is often referred to as having a dual diagnosis or DS-ASD.

Getting & Understanding a Diagnosis

Research into DS-ASD is a relatively new field of study and, as result, many people with Down syndrome and autism remain undiagnosed with the latter. The more information is shared and relationship between Down syndrome and autism is understood, the sooner an individual with DS-ASD can be diagnosed after autistic characteristics first begin to present. Once an individual receives a dual diagnosis, additional resources for support, such as ABA (Applied Behavior Analysis) therapy, are often made available to families.

The NDSS Down Syndrome and Autism pamphlet offers a concise overview of what to do if you suspect your child may have a dual diagnosis and the behaviors that may indicate ASD (see below). Comprehensive information is also available from the Down Syndrome-Autism Connection, the only nonprofit organization dedicated solely to DS-ASD in the United States. Additional reading can be found at the websites for the National Down Syndrome Society and Down Syndrome Resource Foundation.

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Source: https://www.dsawm.org/dual-diagnosis-resources/

DS-ASD Dual Diagnosis – info and a parent’s perspective

My Thoughts & Journey with the Dual Diagnosis of Down Syndrome and Autism Spectrum Disorder

By: Kim Youngberg
Source: https://dsagsl.org/dual-diagnosis-blog-2022/

Put a finger down if…

  • you have a magnificent, extraordinary, & unique child
  • you feel like the world’s best researcher, yet clueless at the same time
  • there are days in your house that are amazingly great & days that are incredibly exhausting
  • you know you’re a part of a great community but also feel isolated
  • in your gut you feel like there’s “something more” going on with your sweet babe

If you’re familiar with this popular social media challenge or have a pre-teen/teen child you may have heard of this trend. While it can be used to compare yourself to others, my hope is that this specific example will help you to feel embraced as a parent to a child with that special something “extra”. Not just the extra chromosome, but the extra diagnosis of Autism Spectrum Disorder (ASD), bringing your child to have a ‘dual diagnosis’. Many parents suspect this diagnosis before the official one is given. I did with my son, Easton (or “E” for short).

I first took Easton to a neurologist at 2 years old. Being an educator in special education myself, I was certain that we would be leaving that office with an additional diagnosis, which would make #7 on the list. To my wondering surprise, he said Easton was “too social and engaged with human interaction” (despite E ruining his entire collection of spinning light up toys in that one 30 minute visit). While he had “markers” for being on the Spectrum, the doctor said the behaviors Easton presented with, were because of his Down Syndrome (DS).

A few years later, after many more of his teachers & therapists also agreed of a suspicion of ASD and him meeting eligibility for a school diagnosis of Educational Autism, I took Easton to a child psychiatrist at St. Louis Children’s hospital- Dr. Constantino. Before he even looked at the paperwork and rating scales, Dr. Constantino stated Easton most definitely has autistic tendencies. Receiving that diagnosis was a relief yet a whirlwind at the same time, because it opened up new doors for Easton.

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Autism Resources List

Neuropsychology Evaluation/Evaluación neuropsicológica

  • Psychology and Beyond
  • Healthy Minds Psychology
  • Autism Spectrum Assessment Clinic (ASAC) at the University of Miami + ABA therapy
    • Phone: (305) 284-6140
    • Email: asac@miami.edu
    • University of Miami-Flipse Building 5665 Ponce de Leon Blvd, 2nd Floor
    • Coral Gables, FL, 33124-0725 USA
  • UM-NSU- CARD (provide many services) + ABA therapy
    • In Miami-Dade or Monroe, contact 305.284.6563 or Email: card@miami.edu. 
    • Broward, contact 954.262.7111 or email card@nova.edu.
  • New Way Day Services + ABA Therapy

Applied Behavioral Analysis/Análisis aplicado de comportamiento (AAC)

  • Crystal Minds New Beginnings
  • Psychology & Beyond, Inc
    • Frank Perez Verdecia
    • Phone number: 786-574-5894
    • Address: 8370 West Flagler St. Suite 226 Miami, FL 33144
  • CEGA Behavioral Health
    • LexiMark@cegabh.com
    • (954) 778-9238
  • UM-NSU- CARD (provide many services) ABA therapy
    • In Miami-Dade or Monroe, contact 305.284.6563 or Email: card@miami.edu. 
    • Broward, contact 954.262.7111 or email card@nova.edu.
  • New Way Day Services ABA Therapy
  • Behavioral Family Solutions
    • Address
      • Miami Dade: 13195 SW 134th St Ste. 201 Miami, Florida 33186
      • Broward: 2200 N Commerce Pkwy Ste 200, Weston, FL 33326
    • Phone:
      • Miami:  (786) 206-6500
      • Broward: (954) 289-0111

Useful Websites

Any further questions regarding diagnosis and resources:

  • Call 1-888-AUTISM2 (1-888-288-4762) 
    • Autism Response Team (ART) is specially trained to connect people with autism, their families, and caretakers to information, tools, and resources.
    • familyservices@autismspeaks.org
  • En Español llama: 1-888-772-9050
  • help@autismspeaks.org