Our Family’s Journey: Down Syndrome & Autism
When I tell people that our daughter has Down syndrome and autism, the most common response is “You can have both?” The answer is, yes, people with Down syndrome can have autism spectrum disorders (ASD).
When my partner, Marcy, and I adopted our daughter Shanika, we knew, of course, that she had Down syndrome. We also knew that she had a history of abuse and neglect, and had been diagnosed as “failure to thrive.” When she joined our family at the age of four, she was only 27 pounds – much smaller than her two year old friends. She wasn’t talking and her movements were awkward. She clearly had a lot of catching up to do.
Over the next year, Shanika’s incredible drive and spirit shone through. She grew fast, learned to use single signs to ask for what she needed, and mastered equipment on the playground through sheer force of will. We were thrilled with Shanika’s progress, but also worried; Shanika had very little in common with the other kids at our Down syndrome support group. Her eye contact with us was fleeting and rare, but she would gaze forever at her hand or a book she flipped in front of her face or at certain pictures in her classroom. Otherwise, she was in constant, purposeless motion – rocking back and forth on the floor, or dashing madly from thing to thing without engaging with anything or anyone. She was only interested in toys that had flashing lights or made noise – if offered anything else, she became furious. She had a desire to communicate her needs, and clearly understood a lot of what was said to her, but her expressive language was almost non-existent. Instead she made a constant, low humming noise.
We did all of the usual tests – vision, hearing, but turned up little. One thing was certain – she had significant sensory processing issues. Shanika could touch and eat only certain textures. She always wanted music very loud, and was happiest when swinging. Interaction of any kind, with toys or people, was extremely challenging for her, and only happened if we initiated it.
I took a job as a classroom assistant at a program for preschoolers with ASD, as a way to learn more about sensory processing. I was shocked to see how much Shanika had in common with the children in this program. We made an appointment to have Shanika assessed.
Our time with Shanika before her assessment was the hardest of our lives. It broke our hearts to see Shanika struggle and to worry that there might be something more we could be doing. It was intensely frustrating to try to engage her, and even our simple daily routine was exhausting and full of struggle. Knowing that something was wrong, but not having a word for it, was disempowering. We felt isolated from other families with children with DS – our experiences seemed so vastly different, and going to support group became just another reminder of how little Shanika had in common with these kids. Luckily, the skills and strategies I picked up in the classroom helped us cope and work with some of her sensory issues, feeding her a daily “sensory diet” and becoming more attuned to when we could coax her out of her world and into ours.
At our first assessment, the professionals acknowledged our concerns about the possibility of an autism spectrum disorder, but Shanika was developmentally too young and had few skills to test. They could not make a conclusive diagnosis. We were all reluctant to give her another label without being absolutely certain. We entered a year of therapies and waited for another assessment, continuing to read everything we could about autism and Down syndrome in the meantime.
By Shanika’s second assessment, she had developed some testable skills. They were better able to discern her “skill scatter” (development at significantly different rates in each developmental area), and they were able to make a diagnosis. She was diagnosed with PDD-NOS, or pervasive developmental disorder – not otherwise specified, also known as “atypical autism.” PDD-NOS is one of the five disorders on the autism spectrum.
Since then we have learned the difference between developmental delay and developmental disorder, and how we and others can help her feel safe by only varying one of her “areas of familiarity” at a time. If the setting, activity or people are different or new in any given situation, she has trouble coping and learning. If only one of those areas is varied, she has a chance at trying or learning or doing something new.
Today, at the age of eight, Shanika has made great progress. She is potty trained, her spoken language is improving, and she can play with toys. But, most importantly, she is a calmer, happier child. She is even learning that personal interaction can be a fun part of daily life with family, friends, and teachers.
Many families would have hesitated, understandably, to add another diagnosis to their child with Down syndrome. For Shanika, being diagnosed with PDD-NOS has been helpful because it has encouraged her teachers and therapists to use different approaches with her. It has given us a more accurate vocabulary to describe her needs. It has helped our family tap into resources for children with ASD, and to find other families with experiences like our own. Knowledge is power, and, in our case, knowledge about autism spectrum disorders is helping us empower Shanika to grow and thrive.
Editors note: For more information on Down syndrome and autism spectrum disorders, see Disability Solutions: go to http://www.disabilitycompass.org/publications/back-issues-of-disability-solutions and choose Volume 3, Issues 5&6
Printed in Special Times 2004 March/April issue