April is Autism Awareness Month and April 2nd is World Autism Awareness Day. For those of us that are dealing with autism it is a daily reality not just a one day or month long observance. Last week the US Center for Disease Control released an estimate that 1 in 68 children were on the autism spectrum… however their study is time delayed and limited (2010 data regarding 8 year olds from 11 states)… previous estimates were also time delayed and limited so all we can what we can get from the statistic is that autism is becoming more prevalent not the current real time percentage.
Ironically in 2010 when my daughter was almost 8 I gave a speech at an autism awareness event:
"It is hard for most of us to understand people who are different. Unless you have day to day experience with those afflicted with autism you probably don't know what they are like or how it must feel to be one of them. Let me paint you a picture... tell you a story....
Imagine one morning that you wake up on a beach. You expected to wake up in your bed, but here you are... covered in sand and salt spray, seashells poking you in the back... and for some reason you uhhh soiled yourself in your sleep.... No you were not drinking last night...
Nearby you hear voices. You don't understand what they are saying but it is musical and flowing... it draws you up off your back and towards the sound. As you are walking you smell something delicious and feel your empty stomach growl in anticipation.... You crest a sand dune and look down at a village and people the likes of which you have never seen before. You hesitate for a moment... nervous and afraid, but you are hungry and alone... lonely... so you move down towards them.
As you approach you hear people yelling, "Éi! Poios eísai? Ti káneis edó̱? Mi̱n mas li̱stév̱oun den échoume polý ... ti eínai to ónomá sou? Vro̱máte!"
("Hey! Who are you? What are you doing here? Don't rob us we don't have much... What is your name? ... you stink!")
You have no idea what they just said to you... you try to tell them that you are a friend, that you mean them no harm... your name... that you are hungry... but you discover that you cannot speak. In fact your mouth didn't open, only strange sounds issued from your throat and uncontrollable lips.
One of the people asks you, "Eísai koufós? Eísai chazí̱? ... Vro̱máte!"
("Are you deaf? Are you dumb? .... you stink!")
You inwardly sigh and start walking towards the source of the delicious smell ... you reach out to grab a warm bread roll and get smacked on the hand and hear, "kléfti̱s!! pó̱s tolmás klépsei apó ména!! Vro̱máte!"
("Thief!! How dare you steal from me! ... you stink!")
You point down toward your stomach and the villagers say, "nai. Vro̱máte!"
.... Yes you stink... And they all start laughing...
Frustrated you snatch a roll in each hand and run off....
Not being understood and not understanding are a daily occurrence for those with autism. In time if that village gave you a chance you might learn their language and their way of life... but that chance is a big if. And you might think that Vro̱máte was just a spur of the moment name they had given you... until someone teaches you that it means 'you stink'.... But by then you might just have to grin and bear it.
The chance to be taught and included is a big if in our society too. Most people try to ignore the problems and afflictions of those around them. They insulate themselves, keep themselves busy and apart... uninvolved. Those that have a mild interest and sympathy watch media pieces on the web and television. All too often what they see of autism is not reality, but what the media thinks will make people feel good or give them good ratings. I have a lot of experience with this segment of our population.
Whenever I venture out with my daughter Julia, at some point she will do something strange like climbing into baby cribs or on tables in stores; obsessive compulsive actions like lining up movies or books on the floor; or make very loud happy or angry noises (aahhhgnnn!)... At this point I feel compelled to tell those watching nearby, or those who are so helpfully giving me parental advice, that my daughter suffers from autism. Almost always there is a pause and kind words and they walk off with a smile or shake of the head. Often after that initial response there is another comment, something like "oh, what instrument does she play?" or "it must be nice that she can draw well" or "at least she will be good with a computer some day."
You see... a lot of the media segments show autistic children that are blessed with some sort of talent. They bring joy to those around them and give the child an outlet and connection with the world....
Years ago, when I was not in a very good place with Julia and her issues I would gruffly respond to comments such as these with something like "yea she's a regular rain man" or "she plays kazoo" or "she draws with charcoal and makes only pictures of puppies and people at the beach" .... Yea I was bitter and trying to make myself laugh....
Later when I had achieved some peace and a sliver of acceptance my responses were a bit more civil. I would smile and say "I wish that what the media shows everyone were true. I wish that she had some form of expression that could make her happy" and with some people I would add with a laugh that "I wish she had a skill to help pay for her upkeep"... yea still a little bitter...
The past few months though I have seen something that must have been there all along. It was either buried inside Julia or I was unable to see it because of my own hopes and expectations of what a daughter should be.... I have come to realize that Julia does have a savant like skill or trait. One that most people would not necessarily value but I have come to cherish. She is a savant of the heart... of emotions... of self-expression without words....
Ok, you are wondering... what is he talking about?
One of the defining traits of autistic children...autistic people... is that they don't have a social filter. They don't do what others want or expect of them because they don't get embarrassed or fear repercussions... They don't understand or care about the social niceties.
Julia has worn her heart on her sleeve without regard of what anyone else thinks. For years Julia has been sad and frustrated and angry. She has sighed and cried... quick to growl, yell, pinch and hit those that annoyed her or didn't do what she wanted.... And she has smiled, laughed or giggled when happy. But with all the difficulties in the early years, it is easy to remember all the negative moods... and the beautiful memories of smiles and giggles fade away or get buried.
This past year has seen a remarkable change in Julia. She is less angry and sad... she seems less frustrated. Yes she still pinches when she doesn't get her way... but it is her way of saying "give me what I want."
She now seems happier more often than not. She laughs and giggles. Smiles at friends, family and strangers that appeal to her... and much to the dismay of her brother and kids playing nearby she gives lots of hugs and kisses... it is quite a funny thing to explain to some random teenager at the park that she likes him or her.
Julia gets immeasurable joy now from getting tickled, looking at beautiful pictures, sniffing flowers... from playgrounds and swings... she enjoys being around other children.
When she is happy and she looks at you with a gleam in her eyes you can see the unvoiced statement, "These are the things that make life worth living!" And you can only smile or laugh with her, and agree...
I have come to realize that this change in Julia is not something I have done. It is the result of the women working at Reaching Potentials. They have been far more than teachers and therapists to Julia. They have been family... a combination of big sisters and mothers. They have been role models and friends. They have given her words to define the world with, taught her to use her voice and mind, and they have shown her understanding, compassion, and love. I believe it is the connection with these wonderful ladies that has brought Julia this measure of peace. And when I realized what had occurred, it brought me peace as well... and taught me true acceptance of my daughter. To my friends and family at Reaching Potentials... thank you all. "
Reaching Potentials www.reachingpotentials.org
I’ve come to view that time period in which I wrote that speech as the eye of the storm. She laughed and smiled… “talked” to people using picture cards and an iPad app… she was a happy, easy going kid, but at 9.5 years old everything changed with the onset of puberty. It’s been frustrating and painful... I have the bruises and scratches to prove it. I've found that some age and gender traits are hard-wired... slamming doors, rolling her eyes, huffing, sighing, pouting, etc. I wish that her actions stopped there with the "normal" horrible teen / pre-teen behaviors, but they don't. I'd give almost anything for my main complaint about her to be that she back-talks and slams doors. I won't go into detail because unless you are living with someone with a mental illness or developmental disorder you probably wouldn't believe me. You'd give ridiculous advice like "scold her"... "put her in the corner"... "take away her privileges", or you'd offer me help you are ill equipped to give. For those of you that are living this kind of life you can nod and know that you are not alone and that others are dealing with this too. Misery loves company right??
If your spectrum kids haven't hit puberty yet I hope that it isn't as bad for them as it has been for my daughter... And as to the title question "What begins with laughing and ends with cries for help?" the answer is April. Begins with April Fools' Day and ends with May Day. Perhaps whomever assigned April to be Autism Awareness month had a dark but fitting sense of humor?