As a parent walking the road alongside many families who have a child with Down syndrome, we’ve had both challenging and rewarding experiences. We hit a fork in the road years ago when we began to notice our son, Nick, struggling with speech, self-stimulatory needs that couldn’t be re-directed, and a myriad of behavior challenges. At this juncture, we had him evaluated for autism, and as I suspected, he received the secondary diagnosis known as co-occurring Down syndrome and autism (DS-ASD).
Did you know that current research suggests that 16-18% of people with Down syndrome also have autism spectrum disorder?
This new road is a lot different and bumpier than we imagined. However, we found resources and experts to help guide us down this road more smoothly. Our son Nick is 29 years old and as a seasoned parent my mission today is to help other families navigate DS-ASD more easily by advocating, speaking, and writing about our experiences and what I’ve learned in my blog and book published in 2020 A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is a memoir with valuable takeaways in each chapter along with an appendix of tips and strategies of topics including Individualized Education Plans (IEP), therapies/ABA, toilet training, wandering/elopement, puberty, behavior management/meltdowns, AAC, doctor/dentist visits and much more.
Support for Individuals with DS-ASD There are three main areas that need to be addressed in order to support individuals with DS- ASD. These included behavior management, communication, and sensory needs.
First, we addressed the behaviors by requesting a Functional Behavior Analysis (FBA). Data was collected to determine what might be triggering behaviors and what function they served. Once this was completed the IEP team and the Board Certified Behavior Analysis (BCBA) created a Behavior Support Plan (BSP) to target behaviors. The BCBA also helped us to work on functional behaviors and life skills like toilet training and hygiene.
The second area was to look at communication. Nick has very good receptive language, but the autism and verbal apraxia diagnosis limits his verbal speech. He knows many words but is unable to speak sentences and engage in reciprocal conversations. The speech therapist determined that Nick was strong with visuals so we worked with him to use Augmentative and Alternative Communication (AAC). These included no-tech (body language, gestures, sign language), low-tech (pictures and picture exchange communication system-PECS), and high-tech (electronic devices-TouchChat, Proloquo-to-Go).
The third area we addressed was sensory needs with an occupational therapist (OT). The OT implemented a sensory diet which helped with self-regulation to keep his engine running optimally throughout the day. All accommodations like providing sensory breaks, allowing processing time, visual schedules, token boards, social stories, emotions/self-regulation charts, and fidgets/sensory items were written into the IEP and used across all environments.
Once we addressed these three areas and provided support for Nick, he became more engaged at school, at home, and in community activities. The incidents of meltdowns decreased significantly as well.
Transitional Steps for Nick's Independence
Local and national Down syndrome support groups and autism clinics also helped to provide resources and support throughout the lifespan. Here are some of the steps we took to provide more support as Nick transitioned from teen to adult: 1. Apply for the state Medicaid waiver to get funding for safety equipment and respite care
2. Apply for Supplemental Security Income (SSI) 3. Set up a special needs trust and wills 4. Obtain a state ID 5. Determine guardianship needs and register for the draft at age 18. 6. Research and visit day programs and potential job/volunteer opportunities 7. Work with service coordinators for housing options 8. Coordinate a person-centered care team for your child’s needs as they become adults, to advocate and assist with future planning, finances, health care, etc.
Community Support is Available
Raising a child with co-occurring DS-ASD can be isolating. You don’t feel like you fit into the DS support groups or the autism groups. Caregivers may be more challenging to find and retain as well. This is why it is so important to grow a circle of support and find other families going down this road. It’s also critical to plan ahead for the future and set the wheels in motion so that you are not making decisions in a crisis mode.
As I researched for The Essential Guide, I discovered the frequency of dual diagnosis (DS-ASD) as well as the struggles many families have finding resources and fitting in. I picked up Teresa's book and was amazed by her strength and initiative. I had the great honor of meeting Teresa at the recent National Down Syndrome Congress convention. She has so many stories that may bring you to tears and will also spark your determination.
-Steve Friedman
Organizations like The Down Syndrome-Autism Connection offer specialized outreach through support, education, and resources including webinars, NDSC convention presentations, monthly Zoom meetings, free online support on Facebook (public and private) pages. For more information visit The Down Syndrome-Austism Connection. Finding a good circle of support will help parents feel like they are not alone and give hope for the future.
Today at age 29, Nick enjoys a full life thanks to all the supports we have put in place. Before the pandemic, Nick attended an adult day training program that offered in-house and volunteer jobs, enrichment activities, and community trips. Unfortunately, this program and others in the area are limited in staff and unable to accommodate the higher needs associated with a dual diagnosis. He remains on waiting lists for these as well as housing.
The reality is that the waitlist and choices for day programs and housing are fewer for DS-ASD families. Parents should know that it’s important to get their child’s name on the waiting list when they enter adulthood. Currently, we do a self-directed in-home program with a staff of personal support workers (PSW’s). The PSW’s do structured teaching activities, work on life skills, and take trips out into the community going out to eat, movies, parks, etc. Many of the staff were his former teacher aides from high school, post-secondary, and adult day programs. Nick has many in-home jobs that he takes pride in and is good at. We continue to work on independent living skills and giving him a voice using AAC, offering choices, and focusing on letting his voice be heard. Follow us at Down Syndrome with a Slice of Autism on Facebook and Instagram to see these self-directed activities.
The end goal is to continue the plan for Nick to transition into adult life with respect and dignity. Our vision is that Nick has a life that provides him with opportunities, experiences, and a safe place to flourish. As parents, there is no better feeling than to see your child grow up and have a meaningful and fulfilling life.
Teresa Unnerstall, BS Education, is a DS-ASD consultant and the author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. Teresa has presented to NDSC, NDSS, and other national organizations, universities, and medical groups. She has been featured on webinars and podcasts about her work in the field of co-occurring DS-ASD. Since 2012, she has written a blog, Down Syndrome with a Slice of Autism, about her son Nick and navigating DS-ASD. Teresa serves on the Board of Directors for The Down Syndrome-Autism Connection.
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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