The Hidden Truth of Autism vs DS No One Talks About
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.
Hi Kim, I come from the dual diagnosis group. It's a really difficult diagnosis. In some ways our kids can be more mellow, but the extra issues like massive global hypotonia and cognitive delay make learning difficult. We have less intellect in DS than kiddos with autism, and we have the behaviors that make people with DS look at our kids strangely.
People definitely infantilize people with DS, but to be honest people with DS are the darlings of the special needs community. Everyone thinks people with DS are so sweet and fun. And they definitely can be, even my daughter. But her OCD behaviors, the stims, the lack of any speech, the complete need for care sets her apart. I'm in a group of the dually diagnosed, and the families are mostly isolated. They are too special needs to join programs because of the necessity of a one on one. Other people with DS don't get kids like mine. I heard story after story of kids who were avoided by people with DS. So much for inclusion and acceptance. I'm hoping it's the delay and not that they are jerks.
We have anywhere from 18.2% -33% of the DS population on the spectrum yet there are no programs for the dual diagnosis. The famous Gigi's Playhouse all over the world and started near me has nothing for the dual diagnosis. I tried contacting them twice to offer services for this group and nobody ever called me back. The autism community fits better for my kiddo. But it's lonely. She's now homeschooled and some days I just want to get her back into school because at least she has friends. But then they only teach her how to fold football jerseys and do calendar🙄
Anyway, I'm ranting here. Just thought I would share.
Posted by: Julie | May 29, 2022 at 11:26 PM
"Kim-I have an adult son with autism who also still loves to watch his favorite Sesame Street videos on YouTube and also loves watching Disney, Thomas the Tank Engine, Winnie the Pooh and others that he should have outgrown years ago."
This is a very common feature of children with vaccine induced encephalopathy (autism). I would love to see a study on this. They seem to be drawn (no pun intended) to the stylized/simplified faces of comics and cartoon animation. Could it be that this is a way for them to codify facial expression to figure out its meaning? Is their behavior necessarily rooted in "childish" behavior? Or is it actually a sophisticated self-help mechanism. Learning their code could be a way to have new lines of communication. All 4 of my now adult children still love cartoon strips (Calvin and Hobbes, Foxtrot, Garfield) and cartoon animation (Japanese Manga style is big). They all started drawing their own comic strips when they were young. My youngest adult child is pursuing a career as a graphic novelist. Not only can he draw well, but he writes fiction. Another sibling is a professional level 3-D graphic artist. It is currently a hobby for him although I am encouraging him to develop it into a full time career. My eldest had side-gigs in website design and is a whiz with photoshop. The other brother, who had the strongest autistic behaviors (delayed speech, meltdowns, screaming, gut issues, tics, sound and touch sensitivities, etc.) also was attracted to cartoons/ animation. He taught himself his older brother's Maya 3D software and produced his own claymation videos (we watched Gumby on occasion). After seeing his younger brother's superior 3-D art skills, he decided to switch to computer programming and write a physics engine for video games. In 6th grade, he already had figured out that there was more money in that than in being a video game developer. He ended up with a college scholarship and graduated with high honors in Computer Science. A Fortune 100 company snapped him up and he lives completely independently in another state happily programming for a top selling product.
All of mine were home schooled from an early age. This gave me the freedom to observe them and figure out what their needs were and their strengths. I was able to use their artistic and computer interest to open doors to higher levels of learning. Your adult children are still attracted to these cartoon images for a reason. This is part of their communication strategy. Instead of fighting it, learn from it. It is never too late. My children's early road was quite bumpy and alarming at times, but I prayed for help from Jesus continually. I still do.
Posted by: Emmaphiladelphia | May 02, 2022 at 10:09 PM
Kim-I have an adult son with autism who also still loves to watch his favorite Sesame Street videos on YouTube and also loves watching Disney, Thomas the Tank Engine, Winnie the Pooh and others that he should have outgrown years ago. Our lives with autism are so different from other families whose children have followed the expected path of growing up and out of childhood. People have no idea how difficult our lives are each and every day, living with our adults who have never really grown up. I get very depressed about it and wish things had turned out differently for him and our family as well as all the other families affected by the autism condition. We must pray for the strength to continue to care for them.
Posted by: Gayle | May 02, 2022 at 10:20 AM
Down syndrome receives excessive sympathy from the public and excessive accommodations at school and work and day programs or whatever. Those people in wheel chairs received the same unfair preferential treatment. This preferential treatment is unfair to those with other disabilities like Autism or hearing impairments. No body knows my rare genetic disorder called Neurofibromatosis despite 1 in 2500 people having it but every body knows about Down syndrome and parapalegia.
Posted by: Bill | May 02, 2022 at 08:22 AM
Thank you. Thank you. Thank you for continuing to state the uncomfortable truths of our lives. People do not get it until they live it. Our daughter (not autistic) is 36. In the last 2 years has become a TSS worker who has been assigned to a number of Autistic children.
Despite living in and around our son Aaron for the last 15 years, she still did not get it until she actually had to work one on one with other autistic kids. She had seen and lived with Aaron, but chose not to try to interact with him on a real level.
That is all first hand. For people who have not lived it, forget it. When people look at me funny when I hesitate about his issues, I suggest they spend a few minutes with him one on one. It doesn't take long to figure it out. And our Aaron is very verbal. I can't tell you the number of "professionals" who tried to describe him as something else since he was able to talk.
Posted by: Andrew Foss | May 02, 2022 at 07:53 AM