Our DS-ASD Journey, by Mary Hart
It’s been like night and day from 35 years ago and today. Back then, a child with Down syndrome just didn’t include autism as an additional diagnosis. Today, with increased awareness and improved diagnostics and knowledge, a dual diagnosis is acknowledged and accessible. At that time, there was even so much more to learn about autism it’s self through research.
When Julie was about 2 years old (1987), I noticed many differences between her and other children with Down syndrome her same age. Things like dangling beads and toy figures that had a good ‘wiggle factor’, lack of speech, not really looking at people, intense tactile defensiveness including not wanting water to touch her, and extreme sensitivity to noise and loud sounds. And as she got older, many areas of development lagged way behind her peers such as lack of speech development, not really interacting with others, huge temper tantrums that included lots of ‘drop and flopping’, and mostly parallel play. At the time, most of the professional reasons were described as lower functioning, slower development—which were accurate and reasonable explanations. However, my instinct kept telling me it was something beyond those explanations. As a parent, I felt so isolated and alone and had to fight for understanding.
As Julie grew older and we conquered through those early years, there were also a series of of circumstances that converged and finally directed me towards real answers. During that time, many parents were working together towards meaningful inclusion for their children with disabilities, not just Down syndrome but other disabilities as well, including autism. I met other parents who had children with autism; I happened to read an article about Down syndrome and autism; one of the sibling support groups where I took my son was offered by Judevine —and while waiting for him, I happened to pick up a bookmark that had a list of traits common to autism. That was it—I knew— and all the pieces seemed to fit and told me that Julie also had autism. Luckily, at that time, in the late 90s, when Julie was about 12 years old, I was able to get a medical diagnosis of autism for Julie. In her case, she responded immediately to medication and I felt like I had my daughter back!
Emotionally for me, it was such a great relief to finally have an answer! The behavioral and educational challenges continued. Even though she had the medical diagnosis, she was denied an educational diagnosis that could have given her additional resources while in school—I was told she was no different than any other child with Down syndrome. Yet I felt more resilience and better able to access other avenues and learning tools that could in turn provide more opportunities for Julie’s continued growth and development. I was able to focus more on Julie’s strengths and abilities.
Today, parents who have children with a dual diagnosis of both down syndrome and autism can feel hopeful, supported and understood. Dual diagnosis is recognized and parents have much more support, understanding and awareness. More resources are accessible. Now, at age 34, Julie has come into her own and she has a meaningful life and has friends who value her for the person she has become. Back when Julie was around 12 years old,, another girl with Down syndrome who knew Julie came up to me said: “I don’t like her, she’s not my friend; I’m cool and she’s not”. Of course, she truly did not understand the impact of what she said to me, and that was just her response back then to not understanding differences with autism and behaviors.
Today, I feel acceptance is much kinder: While sitting next to a woman with down syndrome who knew Julie, she asked me ‘ why does Julie act that way’? I explained she also had autism and that her brain works differently in some ways. She replied: ‘Cool, now I understand’ and also added she liked being with Julie. To me–today and as a parent– that’s a huge leap in awareness and understanding, especially within our own community.
Today, I feel very supported and heard by the DSAGSL and staff as they embrace full support of our children who have the additional challenges of dual diagnosis. Today, they provide an active support system and resources. Today, I feel supported, heard and understood by other parents. Additional challenges continue and it’s still a hard road, but I feel the journey has led to a big pay-off! Julie continues to learn and amaze me. I see her friends, who also have a dual diagnosis continue to grow, especially with the wonderful support of their parents and more opportunities for friendships. Today, we are truly in this together!