When they say it’s World Autism Awareness Day, does that mean, everyone is now sufficiently aware? April 2nd, 2008, the UN announced that this would be THE day to learn more about autism. It was a big to-do. I was a producer at a major international TV network and we were going to cover this day, wall to wall! Programing was rich with actual autistic and Aspergers children and adults, experts, book authors, doctors, parents. I was thrilled to see so much attention as well as new information pouring out of the TV screen. I was so proud to have been an instrumental part in making this happen. Then, a year later, April 2nd came and went, and there was absolutely no mention of it.
Stories have been coming and going, experts have agreed to disagree that vaccines are to blame partially for the increasing number of autism cases, children have miraculously “healed” while others have been accused of cold blooded murder
And on that note, I would like to point out to the media, that autism is NOT a mental disease! Had it been mental illness, there would have been a pill invented that would cure the aforementioned disorder… such pill is not invented as of yet, so would the media kindly cease the use of Mental Disease in connection with Autism and Aspergers !….
In a flurry of contradicting opinions, painful experiences and a myriad of “cures” or lack thereof, I can’t help but ask: what good has come of having a world autism awareness day? What has changed because the Empire State Building or some other building in Dubai, have been lit blue on April the 2nd, or that a woman has decided to keep her blue lights on a whole month in honor of autism? Do the stories in media, blogs, videos, films about it, changed anything.
Ummm NO, and paradoxically, the rate of autism diagnosis among school aged children has jumped in the last years.
According to a CDC study: Children aged 6–17 in 2011–2012 were born in 1994–200 (approximately) and would have been about ages 2–13 in 2007 when the previous NSCH was conducted. The estimated prevalence of parent-reported ASD for that birth cohort in 2007 was 1.16%.
Clearly, the awareness is now here. Loud and clear, we know that autism is prevalent. More children will be diagnosed with some form of autism spectrum disorder this year, than with AIDS, cancer and diabetes combined!
Unfortunately, the awareness has done nothing to make the disorder more socially accepted. While some neurotypical children are completely and totally accepting of their ASD peers, parents of neurotypical children continue to be “protective” of their children and either discourage, or find a more politically correct form of avoidance of children on the spectrum. And later, when the neurotypical children become neurotypical adults and neurotypical parents of other neurotypical kids, they will do the same – prevent and avoid contact with anyone who’s slightly different than their child… Until, one day, they find out, their child’s quirky habits and lack of eye contact, are just that – autism!
As a result of this social lack of acceptance, the ASD children’s social ineptness is exacerbated, and their social inadequateness, magnified by the rules and punishments imposed in the public (and private) school system.
This may go against the grain of many “autism friendly” private schools and their supporters, but my personal experience with a number of them, is that not only are they poorly equipped to meet the special needs of their already struggling students, but they are also not helpful when it comes to counseling and creating effective and comprehensive IEPs (individualized educational plans) and BIPs (behavior intervention plans).
In the light of the latest depressing statistic that one in 50 children is on the spectrum, what is a parent to do? You have three choices: public, private or homeschool. I have tried all three. There is no panacea, there is no one straight and definitive answer, because it will always depend on the PEOPLE who work with your child. Homeschool is of course entirely dependent on the parent. One would think, this is perfect. The parent can create the perfect program, teach it to the child in a perfect way… Not so much…
Have you noticed how even parents of neurotypical children complain how the kids don’t come with instruction booklets, and they have no idea if they are doing the right thing with their children.
Well imagine how a parent of a special needs child feels.
First of all, there is the guilt trip. No matter what religion you are or not, it is inevitable that your conscience will whisper in your ear night and day, that it must be something that you did, or didn’t do that contributed to your child being that way.
Then come the different stages of acceptance. Speech is delayed, so you attribute it to various factors, from too many languages spoken in the household, to a stressful situation, or a dog barked too loudly close to the baby, and he got scared.. . Then you sort of start to see the signs, but you refuse to look at them, and more importantly, refuse to label your child. I mean WHO wants that?! It’s AUTISM, it’s not LICE! You can’t just shampoo it off, wish it away.. NO. It will stay with you, and your child and your family your whole life!
Then it slowly starts to sink in, and the permanent heavy feeling settles in, that your child may never have a life on his/her own, may never have a family of his/her own, and the worst fear of all parents:
When you die… your child…no matter how grown up he/she is, will have NO ONE to take care of him/her!
This is probably the most terrifying fear of all… You feel so helpless in the face of time and this.. this.. whatever this “condition” is, that deters you from actually meeting your child!
I saw “The Notebook” the other day. Hadn’t seen it when it came out. Unfortunately, the descriptions cable gives, have usually little to do with what the movie is about. Her Alzheimer’s onset in many ways reminded me of what Aspergers is about. Except Alzheimers takes away someone you already knew. They had these glimpses of her real self, tiny increments of time, when she was “back” and could talk normally and recognized her husband. Well my son recognizes me, and everyone around him. He remembers everything he’s ever seen or read. We have long conversations about his interests and characters he plays with, or music he’s learned or listened…So in that regard, we are lucky. He has memory for all of us put together. But will I ever have a conversation with him about how he feels about something? Will he ever grow out of it???
It’s a beast of a “condition” I must say… It is unpredictable as the March weather we have right now. There are some months, when he “outgrows” certain traits in leaps and bounds! He’s interested in cool things, he knows everything there is to know about the American Presidents, the planets and galaxies and stars, and most recently about guitar, guitar players since the 50s and their biographies. These are the times he usually excels in school, and has a mild and friendly demeanor and is extraordinarily engaged.
These however are followed by periods of irritable disposition, lack of interest in anything school related, resistance to doing things he didn’t mind before – like writing his homework on his own, reading aloud in class.
This outgrowing thing, is sort of a tango that we keep dancing during the years – two steps forward, one step back.
My favorite is when friends who have no children on the spectrum, or any children what so ever, are quick to offer advice on how I shouldn’t give in and spoil him with satisfying his wishes or spending time with him when he asks. And I am yet to find the most polite way of telling them to go …… themselves. One doesn’t necessarily want to burn bridges, but if the “awareness” we’ve created in the past five years is still not effective, then it’s time for a different campaign.
That’s why I am attaching a blog post by someone who is going through this every day. Read their experience and spread the word.
It’s not only about acknowledging the problem and making people aware, it’s about looking for a solution, each and every day!
And in the meantime, teach people to be tolerant, accepting and welcoming differences of any kind!