Note: We thank Safeminds for sharing this study A Down Syndrome Advantage in Special Needs Parenting? . We've been telling readers for 15 years that autism is not treated like other developmental disabilities.  Why? For all the years of trying to convince the world that autism is a neurodiversity, the reality behind closed doors is sometimes different. And when we venture outside, it can be stark. People get a visual tip off of Down Syndrome and "get it," and then we hope are understanding and kind. At least for that first interaction. When you have a child with autism, the disability is invisible until it presents itself in behavior and differences from what typical children can do.  I'm saying this as nicely as I can. The stares can be cruel when our 7 year old can not speak, or when our 21 year old is carrying a baby blanket, or when our 15 year old is stimming her hands. We do not mean to discount the challenges of Down Syndrome, especially the health and heart issues. There's plenty of worry and heartache to go around.

This weekend, my daughters went to see Sesame Street Live. They are in their 20s, not toddlers. I know that they were welcomed in the arena, and that the cast members dancing on stage surely saw and recognized autism in three the beauties in the front row who were much older than the majority of the audience.

Autistic children and adults face discrimination. They don't go on all the class trips.  They don't get invited to birthday parties. In adults services, agencies are "cherry picking" individuals for day programs. Those with high levels of need because of behavior are not being accepted into programs. Typically, those are the guys with autism. It's hard to hire and retain a 1 to 1 for a non-speaking individual who has challenging behaviors. You can work at Amazon delivering packages all day for more money than most Day Service Providers earn.  And for residential care the picture is even grimmer.

I know a wonderful family with one child with DS and one with profound autism. The child with DS appears to have many more opportunities than her sister because she is so bubbly and sociable. Both girls are cherished by their parents. There are families whose kids have a dual diagnosis. I'd love to hear from them, and any family that can chime in about your personal experience. Thanks.

April 25, 2022

Study Finds that Marriages Dealing with Down Syndrome Have Less Stress than Marriages Managing Autism

Parenting a child with any type of developmental disability is generally recognized as a situation which causes varying levels of stress on mothers and fathers. Recently, new research has investigated how this additional stress affects special needs parents’ marriages. In this current study, researchers examined the experiences of 213 couples living in the United States and Canada. Among these couples, 102 had a child with autism and 111 had a child with Down syndrome. The study’s findings showed that nearly a quarter of mothers and 20% of fathers of children with autism categorized their marriages as distressed. In comparison, the couples of children with Down syndrome, only 10% of mothers and 2% of fathers said the same. The study’s authors believe their data suggests that there may be a “Down syndrome advantage” as well as a “husband advantage” in special needs parenting. The authors believe the husband advantage could be related to husbands (typically) not being as directly involved in daily caregiving responsibilities. The study also focused on a term called “uplifts,” which was defined as positive experiences that offset day-to-day stress. The researchers found that parents of children with Down syndrome reported more uplifts than the parents of children with autism and, in turn, had less stress and greater marital equality. Read more here.