My Thoughts & Journey with the Dual Diagnosis of Down Syndrome and Autism Spectrum Disorder
By: Kim Youngberg
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.
I will be honest with you, as you probably already know, it’s not easy. However, we power through one day, setback, milestone, and celebration at a time. As stated by another parent in our community: “This journey, I believe, is not so much about teaching and changing our kids into a more socially acceptable person, but instead helping them to live their own reality and making it a happy one, giving them the ability to have quality in all their adversity”
Because our lives are so busy, I made a bulleted list of some other thoughts, facts, and suggestions about the Dual Diagnosis of Down Syndrome-Autism Spectrum Disorder. If you’re honored to be a part of the DS community, joining the DS-ASD community is even stronger. I was able to reach out to other parents in some community dual diagnosis groups (That’s one of my number one suggestions! Having a group to go to with questions, rants, and celebrations is an amazing resource.) and they helped provide me with input for the list below:
DS + ASD in General
- The dual diagnosis is a disability unto itself-different from just DS and just ASD, but with traits of each; the level of learning disability tends to be (but not always) greater with the dual diagnosis
- There’s an autism scale while DS is said to not be on a scale
- DS community uses person first language, AU prefers identity first language
- We live between two worlds in terms of how people frame disability
- We see and value the person, but respect and value their differences too
- We wish our children could lead the conversation and advocate with us
- Listen to your gut
- Get a 2nd opinion
- Stimming: New Strange repetitive behaviors
- Splinter skills/gaps
- Had words/skills, then lost or disappeared/reappeared
- More than just “at their own pace” or delayed
- Most w/only DS learn skills ‘eventually’/evenly where our kids may never develop certain skills (independently)
- Can do age-appropriate/higher level skills but not basic/fundamental things
- Ask pediatrician for referral, if necessary
- Child psychologist
- Diagnosing specialist
- School evaluation for educational autism
- Keeping diagnosis on paper is important because you need it for schools and insurance
The Tough “Mountains” to Climb
- May be told your child is too friendly, engaging, eye contact, affectionate to have the dual diagnosis
- Just told it was ‘severe cognitive delay’, sensory issues, or behaviors
- Can change how others interact with him
- Can take years to receive diagnosis
- Watching your child regress is hard (especially when you’re already waiting for those baby steps you know will be delayed)
- It’s one more diagnosis/thing to accept &/or grieve over
The Easier “Downhill Slope”
- Diagnosis doesn’t change services necessarily (still get many therapies as you would for DS), except easier to get them & therapy is targeted more specifically to child’s communication/Autism needs
- Gives access to better educational and therapeutic opportunities
- Encourages others to have some understanding of our challenging situations without blaming us for our child’s struggles
- Gives an answer to your confusion and worries
- Helps relieve some self-doubt (it’s not your fault)
- You’re not alone- there are other parents & caregivers who feel similar (it’s okay to feel anger, sadness, confusion, relief, hope, or worry. It’s okay to feel anything, or not to)
JUST REMEMBER! At the end of the day, the diagnosis doesn’t change your child- he/she is still the same child you’ve always loved!
Down syndrome and Autism Dual Diagnosis Resources
DS-ASD is the co-occurring conditions of Down syndrome and Autism Spectrum Disorder
Does Autism Spectrum Disorder occur more often in people with Down syndrome compared to the general population?
It is believed that approximately 18% of individuals with Down syndrome will also have Autism Spectrum Disorder.
- FREE Online Support (Facebook and Zoom) through Down Syndrome Autism Connection: https://ds-asd-connection.org/
- Families with loved ones with DS-ASD are invited to join other families through a world-wide community via their closed Facebook support page. They also offer a monthly Zoom support meeting on the last Tuesday each month at 8pm EST. These 2 platforms allow you to ask more personal questions and share your experiences with others who are also looking for support and resources within the caring DS-ASD community. Post photos and videos and share the journey! Please contact us to sign up.
- National: https://www.facebook.com/groups/ds.asd.connection.support
- DSAGSL Local: https://www.facebook.com/groups/DS.ASD.GreaterSTL
- Book – When Down Syndrome and Autism Intersect: A Guide for Parents and Professionals (available on Amazon)
- Autism-like Behaviors in Children with Down Syndrome – Frequent Questions
- Down Syndrome-Autism Connection: https://ds-asd-connection.org/who-we-are/frequent-questions.html
- DS-ASD Connection Newsletter: Quarterly Connection E-newsletter is filled with lots of updates. Sign up to receive their e-newsletter.
- PowerPoint: https://www.ndsccenter.org/wp-content/uploads/webinar-04-24-19-NDSC-AutismSoc-DS-ASD.pdf
- https://dsagsl.org/resources/for-families/ (scroll down to Dual Diagnosis)
Commonly agreed upon core features of ASD include:
- Impairment in relating to people in social circumstances (social-disinterest, poor eye-contact, anxiety, social avoidance, or withdrawal)
- Impairment in communication (initiating or understanding spoken words, signs and/or gestures; lack of imaginative play)
- Repetitive body movements and/or a persistent pattern of repetitive or ritualistic behavior. A person’s focus of these activities is usually intense.
If a dual diagnosis of ASD is suspected, what should a parent do?
Speak with your child’s primary care physician and seek a referral to a knowledgeable professional who can help guide you. If a diagnosis of ASD is confirmed, you may wish to discuss possible treatment options with each of the different professionals you choose to consult. Work with professionals who will help you to understand, evaluate and prioritize your various options, and who are not overtly critical or threatened by your attempts to design a program that is best for your child.
Benefits of Knowing
In almost all cases, ASD (not Down syndrome/intellectual disability) is the more functionally impairing developmental disorder. ASD in the setting of Intellectual disability needs to be a recognized dual diagnosis when creating a meaningful educational treatment plan. A diagnosis of ASD could entitle your child to more specialized educational and intervention services.
Has your child been diagnosed with autism?
Please contact Christy@dsagsl.org if you would like to be included in mailings/e-mails about any special events for families of a child with a dual diagnosis. The DSAGSL also maintains a list of experienced parents who are willing to speak with other parents whose child has received a dual diagnosis.
*A portion of this information obtained from DS- ASD Connection – https://ds-asd-connection.org/