As I've written before, I'm pretty tolerant of people's ignorance regarding Autism and special needs in general. Ignorance is generally rooted in a lack of exposure, and not usually in malicious and purposeful obtuseness (though, I admit, that the latter does exist). Most people are not deliberately unkind, inconsiderate, or judgmental. They simply lack knowledge, information and guidance on what they should do in the face of a situation that is unfamiliar to them. They react on base instinct alone, and that's all that we can expect of people who don't have much else to go on.
And, unfortunately, a lot of "information" out there isn't exactly what I would consider to be the most accurate representation of life on the Spectrum.
But everyone's got their thing. Their pet peeve, if you will. The one thing that they can not, and will not accept as being part of their life. And while they can ignore other things, when that one thing creeps up, it can't be ignored.
The ever-awesome Jillsmo, of yeahgoodtimes.blogspot.com, tweeted the following last week:
Yup, she pretty much nails it! That is definitely one of my biggest pet peeves.
But even then, I can forgive ignorance, trying to remember that- once upon a time, less than 20 years ago- "retard" was a completely socially acceptable term and is still even deemed to be the most accurate medical term for some cognitive impairments. There are many that haven't yet caught up to the rest of society that understands that this term, and all the connotations that accompany it, are better left in the past.
But I understand her frustration. It's her thing. I get it.
I have a thing of my own.
So, to paraphrase Jillsmo:
"You want to know how to get me to unfollow/unfriend/un-'know' you? Of course you do! Just refer to my kiddo as "suffering" from Autism in any context. Kthnxbye."
You see, there are few pills in life harder to swallow than for someone to tell me that my bright, smiley, sunshine-filled, fun-loving, charming, caring and affectionate kid is "suffering" because of how his brain works.
Nope, that dog don't bark here.
Yes, Sammie has a genetic (arguably epigenetic) neurological difference that leads to his brain processing information differently than those of with typical neurology.
Yes, that has created challenges for him to learning how to communicate and socialize with others in ways that are deemed socially acceptable.
Yes, he sometimes gets frustrated by these obstacles. Sometimes that frustration turns into tantrums. Sometimes (rarely), it even turns into meltdowns.
But let me make one thing very, very clear: WE DO NOT SUFFER.
Let's look at that word, "suffering" shall we?
To "suffer" is defined by Merriam-Webster as:
So yes, in that context, I am sure that there are moments in Sammie's life, like in all our lives, where he is "suffering". But that is not what is implied when one says that Sammie "suffers" from Autism. People aren't commenting on the occasional moments in life where Sammie might fall, hit his head and 'suffer' pain. Nope. They are commenting on his existence, as a whole.
They believe that to be Autistic is to suffer.
And that's just not a belief that I can accept as being a part of my world, particularly not from anyone who has any first, second or even third hand knowledge of my kid and his life.
Those who know Sammie will tell you that he spends about 90% of his time smiling. Sometimes, he smiles at people. Other times, he smiles at things. And often, he smiles at the world in general, as if he is in deep psychic conversation with Mother Earth.
He laughs ALL. THE. TIME. Sometimes they come in small giggles, and other times huge explosions of hearty chuckles. But laughing is a huge part of his special language, and he loves to share his happiness with the world.
Sammie may not speak, but he can sing. He hums almost the entire day. Some of the songs are made up, others are almost spot-on renditions of his favourites like "twinkle twinkle" or "three blind mice".
Sammie seeks hugs, kisses, tickles and other forms of affection. When he really wants to know that you are paying attention, he looks deeply into your eyes, seeking out your reaction and ensuring a lasting connection. Granted, eye contact doesn't happen as frequently with him as with other kids...but in a way, that is a gift. I have learned to appreciate his eyes and cherish every gaze. I'm not sure I've ever understood eye contact as "connection" before Sammie.
Again, yes- He gets frustrated by the fact that he functions differently from other kids. That's pretty typical actually. We all get frustrated by differences in our skills, abilities, and personalities. We want to be able to do things that others can do, and often don't understand why we can't. This is a part of being human. It is a vital aspect of our personal growth. But it is not suffering.
And, yes- sometimes, he has tantrums. He's 3. That might actually be the most neuro-typical thing about him.
And finally- ok: Every so often, those turn into meltdowns. In Sammie's case, these are exceptionally rare (a luxury that I know is not shared by every family with special needs kids). When they happen, they are intense, and they are frightening. Sometimes, they are dangerous. There are few things in life worse than watching your child become physically, psychologically, emotionally and spiritually overcome by the world around him, to the point of not being able to control his mind or his body.
Those moments are terrible.
And in those moments, there is suffering.
For him. And for all of us.
But these are NOT the moments that define him.
And they are NOT the moments that define our lives.
Sammie is defined by the smiles, the laughter, the joy. He is defined by the intelligence, the sense of humour, the inquisitive nature. He is defined by his persistence, his memory, his perceptiveness. He is defined by his interests, his likes, his dislikes, his fears, his ambitions, his hopes and his dreams.
Without words, he tells us daily the story of who he is. And it is a wonderful story about an amazing little boy, who loves his life and loves himself for who he is.
We do not suffer.
Don't believe me?
Pictures tell a thousand words. Does this face look like the face of a kid in a perpetual state of suffering?
I didn't think so. So don't ascribe to him a life of pain just because you have a hard time understanding that he likes himself for who he is, even if that doesn't suit your definition of what is "normal".
Different is not suffering.
PS: Just in case those around me need a reminder, THIS is my son. And his voice is full of happiness.