Today, April 2nd, is World Autism Awareness Day. Unless you’ve been hiding under a rock for the past ten years, everyone who can read this blog post is certainly "aware of" autism. You either love someone who has it or "know of” someone who has been diagnosed with it. The task now is discovering how to help those affected deal with the innumerable challenges involved in living with autism.
The CDC reports that today 1 in 68 children in the U.S. have an autism spectrum disorder. This marks a 30% increase from just three years ago. The tsunami wave of children who were diagnosed from the early to mid-1990’s are now young adults, with tremendous needs for health and home care, financial resources, and others' understanding.
Two years ago I wrote about how autism has impacted my own family, awareness, and how you can help families and caregivers affected in simple ways. I’m re-posting that same article below because I believe the message is just as important now as it was then. I also have a small update.
This year my son is graduting from high school. Miraculously, he is going off to college on a scholarship. This is not a typical trajectory for a child with autism. Don’t misunderstand, he still struggles in some areas. He sometimes misses social cues. At times, he can be a little quirky. He’s also the hardest working person (adult or child) I know.
His success did not come soley because of his work ethic but because other people didn’t limit their expectations of what he was capable of. Others sought to understand him and worked with him from where he was. They took to heart the adage: “If you’ve met one child with autism, you’ve met one child with autism.” They kept in mind that each person with autism is incredibly unique. His teachers and his friends realized he was wired differently and thought differently, and they started from that place of understanding in their relationship with him.
My goal in writing this is not to say how great my kid is doing but to encourage others who do not have children on the spectrum to meet those with autism from where they are. Start from that place with understanding. Keep in mind “that place” will be different for each autistic individual. Progress is possible. Success, defined differently for each person, is possible. But the process and the progress start when we go beyond “awareness” of autism and begin seeking to understand those who have it.
(originally posted April 2013)
Blue Avatars, Autism Awareness, & Not-So-Random Acts of Kindness
This week I changed my Facebook profile picture because my teenage son has Aspergers, and April is “Autism Awareness” month.
My guy was diagnosed just before his fourth birthday. We were told he would never function in a typical classroom and not to expect that prognosis to change. At the time of the diagnosis, he spoke only in small chunks of language that he had memorized from Disney cartoons. He had behavioral outbursts that made it impossible to take him places without public meltdowns. Despite the doctor’s lack of encouragement (or more likely because of it), we dove into traditional and non-traditional treatments.
Today our son is in 10th grade at our local High School. He takes Japanese and pre-AP courses. He runs Cross Country and participates in various clubs at school and in the community. He’s funny, articulate, and he’s going to be okay. Although he still struggles at times with reading social cues and can appear a little quirky, we are confident that he will go on to college, get a job, and support himself.
I don’t want this to sound like a Christmas card cataloguing all those great things my kid is doing, and others are not. It has been a long, hard, and—at times—an ugly road. But my son is one of the very lucky ones. His is a success story. And I am beyond grateful every day to more people than I can name here who have helped and encouraged us along the way. My son would not be where he is without them. (The rest of my family wouldn’t either.)
We’re lucky because we don’t have to think about how autism affects our family 24-7 anymore. I no longer must plan how to get inside the grocery to pick up a prescription or a gallon of milk without my son having a meltdown in the store. My husband and I can leave our guy home alone while we go out for a movie or dinner. That’s a miracle compared to what we were told to expect 14 years ago. Gratitude doesn’t seem a big enough word to cover it.
I haven’t dealt with a fraction of the difficulties that parents with severely autistic children do. I don’t know why my son’s treatments worked so effectively for him when other parents who were doing the same things we were with their kids didn’t see progress. It’s one of the many frustrating mysteries of the disorder, why we need more meaningful research, and why puzzle pieces are a symbol of autism. Because these kids are all so diverse—responding differently to treatments and situations. What works beautifully for one doesn’t work at all for another and sometimes even has them falling apart.
As you look around at all the “Autism Awareness” efforts this month, you may wonder if the blue ribbons and avatars make a difference. What can more “Awareness” really get us? You may wonder how you can make a difference.
I have a suggestion. And I’m not talking about spending a lot of money or being a political activist. I’m talking about lifting another person’s spirit.
There are estimates now that 1 in 68* children in the US have an autism spectrum disorder. We all know someone affected by ASD, and you don’t have to change your profile picture on Facebook or put a blue light bulb anywhere in your house to help. Instead, consider a not-so-random act of kindness for a parent or caregiver you know affected by autism.
Call and ask that person if you can drop off a meal, run an errand, or pick up their other kids from school one day. Take their neurotypical child to the movie or the mall when you take your own kids out this weekend. (Siblings of autistic children don’t get the chance for those kinds of normal family outings very often, if at all. Their autistic brother or sister is unlikely to be able to predictably tolerate the noises, smells, or just overall stimulation of those environments.) Many times for families it’s easier not to try and go anywhere with a severely autistic child.
If you really want to step up (and spend a little time getting educated) offer to watch your friend’s autistic child while they get a cup of coffee or a bite to eat with their significant other….alone. (Many caregivers don’t have any respite care for their ASD kids. Autism is hell on marriages and relationships.)
It’s the little things you and I take for granted, like quiet conversation over a cup of coffee, that can refresh and encourage these very tired parents and caregivers. Asking to help may feel a little awkward at first. This may be someone you haven’t talked to in a while. An old friend or neighbor you’ve most likely lost touch with since their child’s diagnosis. (Autism is hell on friendships, too.)
Email that parent and see if you can pick up their dry cleaning or give their other kids a ride to soccer practice. You can think of something that would help.
We all know at least one someone who loves a child with autism. I promise a caregiver will welcome your not-so-random act of kindness. You’ll lift their spirit and brighten their day. And that kind of Awareness is something we need not limit to only one month out of twelve. Every day of the year can be about Autism Awareness.
* changed from original post to reflect current statistics released by CDC in March 2014
April 2, 2015