When Your Young Adult With Down Syndrome Is Diagnosed With Autism
This story has been published with permission from the author’s daughter.
“I wish I could show people how much their presents mean to me, but I can’t. I hate opening presents in front of people, I just can’t help it. Darn this autism.”
These words, spoken by a successful young Autistic adult, registered with me immediately. Movie clips from the last 20 years of my daughter Yassy’s life started running through my head. The countless birthdays she enjoyed seeing her friends, but really did not like opening their presents, to the point where we often just explained to people she preferred to open them in private at home. The times people were extremely kind to her, and she struggled to show gratitude that we know she felt. The constant work and struggle over manners and social skills. I realized in an instant that Yassy, who has Down syndrome, also has autism. I knew it in my core.
According to Global Down Syndrome Foundation, and The Down Syndrome-Autism Connection, “Current research suggests between 8 and 18 percent of individuals with Down syndrome may also have autism. An additional 25 percent of people with Down syndrome may exhibit some autism symptoms but not with enough prevalence or severity to be diagnosed with DS-ASD.”
I immediately researched the characteristics of people with this dual diagnosis. Yassy checked almost all the boxes. How everyone had missed it for so long was a mystery, but when clearly checking, it was obvious she did have autism.
My husband and I agreed to not rush, and first reach out to numerous professionals who knew our daughter well. Over the next months, we spoke to at least a dozen educators, specialists, medical, and community partners who knew Yassy well. Without exception, they each agreed immediately that Yassy did indeed show signs of autism. They too saw that she checked virtually every box of characteristics.
At the same time, I joined various social media groups for people with Down syndrome and autism, parenting groups, and autism groups. I introduced myself briefly and then just lurked, so I could learn. These groups validated the fact that not only does autism have a spectrum, but so does Down syndrome, and I would argue perhaps most disabilities. When you start combining vast spectrums with the uniqueness of each individual human being, things get complicated. Stereotypes get thrown out the window, and the focus becomes, “What does this individual need for proper support?”
From networking in my community, I also learned that the adult world is far more agreeable to that philosophy of aiming for the best individual support than our public-school systems are. They expand the “What does this individual need for proper support” by adding, “so they can be as successful and independent as possible in our community.” School systems throw up barrier after barrier for everything from diagnosis, proper support, and actually just being included in general education classes. It is all about money and the lack of a sincere belief that all children can learn.
Sadly, because of that fact, and the fully inclusive road we had already traveled, we knew that dual diagnosis earlier would have most likely cut all chances of our daughter’s full inclusion. She is the same person now that she was then, but those few words would have changed her life then for the worse. Keep in mind I am talking about our specific journey.
It is tragic that that is a fact. Because our tiny, sweet Yassy has been carrying an extra burden all these years. One that was hard for her to explain because of her expressive language delays. Times when people, including us, thought she was just being extremely stubborn were most likely ones where she was frustrated and misunderstood. Deeply.
Flashbacks of those numerous memories have been running through my head. We have apologized to Yassy for our ignorance. Her beautiful, open heart forgave us immediately.
We learned from adult Autistic self-advocates who were diagnosed later in life that a formal diagnosis can take a while. So when researching who we should consult, we asked for clear timelines. In August 2021 Yassy received the formal diagnosis of “Level 2” autism. That day was much like any other. Unlike the day she received her formal ID diagnosis, it was not earth-shattering or depressing. It was instead a day of affirmation. After that meeting, I asked Yassy how she felt, and she said she was fine. I told her that I was grateful to finally be able to understand her better, and more completely. She then gave me a sweet smile, a light sigh, and a very long hug. The load she had been carrying was already dissipating.
Since that day Yassy has been fine with anyone knowing she has Down syndrome and autism. She has OKed this story. And since that day numerous people have also shared with me that their children also have this dual diagnosis. Almost all of them were surprises to me, I had no idea. Many found out in high school or later in life. Some parents shared they were sure their very grown adult children with Down syndrome had autism and they were just not sure they would follow through with a formal diagnosis. That’s an individual decision. There should be a reason for the diagnosis process, and ours was to support Yassy’s work and future independence as much as possible.
We are grateful that Yassy knows exactly who she is, is proud of who she is and all she has accomplished so far, has a strong circle of support around her, and is now more easily understood. In our daily inclusive interactions with each other, we must remember the underlying notion of human dignity. Let’s respect each other for what we do and do not have in common, let’s not pre-judge, and always lend hands of support and inclusion immediately when needed. We are all in this thing called life together.