When it rains, it pours. I’d just like to apologize to my fellow bloggers for putting up a third post today, and encourage you to scroll down and read their wonderful posts as well. 🙂
Today, April 2, is the first world autism awareness day. Many people are doing walks or other fundraisers for autism, and many news organizations are taking part by telling stories of autism and discussing what autism really is and means. I, of course, decided to celebrate world autism awareness day by blogging about it. Well, really, I celebrated world autism day by going to an ob appointment, trying to get my drivers license switched, trying to get poop out of the carpet, cleaning up a lot of throw-up, and going to cub scouts. But none of that has anything to do with autism, so I decided I better at least blog about it before the day was over.
A few months ago I wrote a guest post at MMW talking a little about my experiences with my son and his autism. Today I’d like to talk a little more about the facts of autism. The CDC currently estimates that 1 in 150 children have autism. That’s an extremely high number. Even scarier, some researchers believe that 1 out of every 17 boys 3 and under has autism. 1 in 17 is insane. The numbers are growing faster and faster all the time. Think about how many children you know, and what that statistic says about them. I know that in my ward (which is not a huge ward) there are at least seven children who have been diagnosed with some form of autism. Those are just the ones I know who I know have been diagnosed officially. I know there are others with related challenges, but I don’t know what their official diagnoses are. I also know that of the about 40 houses that are on the circle at the back of our neighborhood, there are at least three children with autism.
Autism seems to be everywhere these days, which is both scary and nice. The scariness comes from the fact that no one really knows what causes it, and many people believe there’s not much to be done for kids with autism — it’s just something their families will have to learn to live with. It’s nice in that there’s so much support and understanding of our kids. When I was growing up I didn’t know anyone with autism, and there was certainly a social stigma attached. Now when I mention it, whoever I’m talking to inevitably says something like, “Oh, yes, my (niece/best friend’s kid/son’s friend/etc) has autism. They’ve been doing _____, have you tried that?” Because, you see, parents are rarely content to just leave things be when they’re told their child will never have a normal life and there’s nothing they can do about it. They think that there must be something they can do, even if it will only help a little bit.
So these parents research. And they get involved in communities, both in real life and on the internet, and they talk with other parents about what they’ve figured out. And everyone tells others what helped their child do just a little better, even though it might not work for everyone’s kid. And then the parents look at what helped others, and they try those things themselves. Some of them help, some of them don’t. But every improvement is celebrated, and what’s more, it’s celebrated by a whole community. There are hundreds of people who understand what a big deal it is when your child points at something and says “Look!” and they all rejoice with you when it happens.
I, personally, have gotten so much help and advice from other parents who have been down this road before me. I am constantly amazed by the amount of time they are willing to spend answering questions, especially ones that must seem pretty obvious to them. But when you’re first starting out, nothing is obvious. I, in turn, have tried to share the little knowledge I have with those around me, in the hopes that something I say will help them and their children. Because it’s really all about helping our kids.
So I guess I’d just like to say a big thank-you to those who have helped me along the way so far, and to those who continue to answer all sorts of silly questions for me. And if any of you have question (silly or otherwise), feel free to ask. I might not have an answer, but I’d love to pass on whatever knowledge I can.
Thank you, Vada, for this post. My favorite person in the world was diagnosed back in the early 1980s with moderate autism, and the experts hardly knew anything about the disorder back then. His family had thought he was deaf or language impaired before a diagnosis was finally made.
Now he’s a wonderful man, a sucessfully returned full-time missionary and a lawyer, with many talents verbally, socially, and in processing facts and systems. He has been reading the Curious Incident of the Dog in the Nighttime and told me , “This book gets me! This is how I think. I observe everything, and sometimes it’s all too much to take in at once.” I respect him so much for all he’s been able to accomplish to overcome his challenges. Since he was about six or seven, no one could even tell or guess he has autism. That took a lot of help from experts, and great attention from his wonderful parents who refused to accept “no answer” for an answer.
I bring this up to say there are probably more autistic people around us than we realize. They need our understanding and help so that they can feel safe and comfortable. We’re all a little quirky, and that is what makes us great. Good luck with your son; I think things will turn out well.
Back in the 1980s my mom was told by some therapists that my kid brother was autistic because she “wasn’t hugging him enough.” Which seemed weird to her – seeing as how she had already raised four fairly normal kids and hadn’t done anything different with this one.
First let me say that April is Autism Awareness Month.
Second, while I find reading stories like the one posted by Alisa uplifting, I cannot help but ache for the parents of extremely low functioning autistic individuals. Autism covers a spectrum. The young man Alisa posted about was at the extremely high functioning end.
I speak from the heart because my 28 year old son has autism and mild/moderate mental retardation. At times I feel he is one of the forgotten because I do not have a “miracle” story to share. My DS has achieved much in his life of which his father and I are extremely proud. He has taught us the true meaning of love and compassion.
My message would be this: Please understand that autism doesn’t necessarily mean an individual is just “quirky.” There are many young men and women who do not live independent lives. They may live in a group home in your neighborhood. Have you noticed? If you see a developmentally disabled boy or girl or man or woman, smile and say hello. That small gesture will mean the world to them.
Thank you from a mom.
Yes, on top of April 2 being World Autism Awareness Day, the whole month of April is Autism Awareness Month. These are great chances for those of us who are dealing with autism to share our knowledge and experiences with those around us, and for those of us who don’t have any direct contact to learn more about this growing problem.
As is evidenced by the comments already, autism is a spectrum of disorders, and the things that work for one person will certainly not work for all of them. I am hoping that my son will someday be able to function like Alisa’s friend (he is fairly high-functioning now, but at 3 it’s hard to tell what will happen), but obviously I will love and care for him no matter what happens with his future life.
The biggest thing I have learned from having a son with autism is to not judge those around me. I know what it feels like to have people stare at you because your child is doing something unexpected or disruptive and you’re not punishing them, etc. I sit there and think “You just don’t understand.” So now when I see someone else doing unexpected and disruptive things I tend to feel love for them rather than judging them, because I don’t know what struggles they’re going through to function even that well.
Also, Maria put up a great post about growing up with disabled siblings, one of whom has autism.
Seth R,
It’s sad that your mother was told that, and hopefully she completely ignored whoever told her that. One of the first theories as to the cause of autism was the “refrigerator mother” theory, developed sometime in the 50s (I think), soon after autism was first diagnosed. It was the prevailing theory until sometime in the late 70s (I think), and I’m sure it did irrepairable harm to many families. Researchers thought that autism was caused by the mother not connecting with their child, keeping themselves withdrawn on some deep level that the child could sense (even if the mother appeared to be perfectly loving and caring). In those days everyone was told to put their autistic children into institutions, and often the parents were told not to visit, and I’m sure that wasn’t the right choice for many of the children or families. Luckily we are (at least a little) better educated now, and scientists don’t try to tell mothers that their child’s disease is caused by emotional neglect.
(And I want to point out, if there’s anyone reading this who has or has considered putting their child in an institution or group home, I am not criticizing that decision. Certainly there are cases where it is appropriate; sometimes it’s really the only option. I only object to parents being told to put their child in an institution simply because they have autism, because I think most autistic kids will do much better in a loving home.)
Kalola,
I too ache for those who are at an extremely low end of the spectrum, but I do want to make one correction. Withought getting into a “the person I know is more autistic than the person you know,” I mentioned that this person was diagnosed with “moderate” autism. That is not the same thing as “extremely high-functioning” as you say. He couldn’t make eye contact, wouldn’t be touched or held,flapped his hands, covered his ears,could not speak to a person, and would spin objects in the corner for hours or line up toothbrushes down the hallway. The therapists wanted to put him in a special autistic school and said he would never be mainstreamed. His parents disagreed because they felt the Spirit guiding them in his particular case.
His story, how he was in fact mainstreamed at six years old, is a miracle. While I know each person is different, I don’t want to take away from the miracle that this was, and the HUGE efforts my friend went through to overcome his challenges. And he is just quirky now. And I love him for that.
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