Honestly, there is nothing good about autism. Wherever one might be on the spectrum, even those considered ‘high functioning’. We try to put a pretty label on it, search for strengths, single out a few success stories, and be effusive about how good it is when in truth, every mom raising an ASD child knows that’s a lie. It is a nightmare from which you never wake up because the problems your child struggles with don’t go away with age.
It is like no other illness because it is many illness bundled into one. Psychologists call it co-morbid. Being autistic is like having diabetes, stroke, cancer, bipolar and migraine. Only nobody cuts you any slack because they don’t “see” a broken leg or a broken body.
Autism is a life sentence for the person with autism and the parents. There is no protocol, no road map, no treatment. At the expense of being judged, I am not ashamed to say that I wish my son had cancer. Then I can find him the best doctors and cure to give him a chance to live. If he lives, we call him cancer survivor. The school will cheer him on, friends, family and even strangers call him a fighter. and who doesn’t love a fighter. Nobody cheers a person with autism. If anything, they are shamed, labelled weirdos because they don’t fit. Nobody applauds a person living with autism. Parents hide it to protect their child’s privacy coz of the shame and stigma the person faces. They are the ones who don’t have friends, the kids who don’t get invited to birthday parties, the teens who don’t ever get to go to a school dance. They are the loners and outcasts because they are not able to make conversations, or manoeuver the social landscape.
Jack and us have lived with his autism for 18 years and he will live for maybe another sixty years, after we are long gone. His problems haven’t gone away, they are just different and bigger because the stakes get higher. It’s no longer about getting him through school now or getting through a birthday party, but getting a job, learning life skills, self reliance and dating.
Society hasn’t found a way to deal with it or provide for aging adults with autism. I cannot envision a life or future for him.
Jack is so rigid, his fashion choices never vary. He wears the same shoes and if we can’t find a bigger size, he will just crush his foot in the old shoe.
He refused to change to the Men’s briefs when he finally outgrew the Large size for the boys underwear. It was the same for his socks.
Th
is is the T shirt he wears to bed for six years, ripped and disintegrated. Literally everything so natural for others is a giant production with Jack. We can’t get him to wear new shoes, new pajamas, new socks, underwear, try new foods, eat at different restaurants. We have lost count of the vacations we have had to cancel last minute because he refuses to leave the house. He eats five things at home and every meal has to taste exactly the same, every piece of meat cut symmetrically.
Nobody’s invited him to a high school dance. At every social event organised by his class or sports team, he sits alone and I have had to deal with his emotional distress after each event. On several occasions, we have had to pull to the side of the road to call 911 for the Psychiatric Emergency Response Team (PERT) as he unravels in the car on the way home because he is hurt, lonely and angry, unable to handle the social rejection.
At 18, he is only able to order food at two drive throughs near our home. He would go hungry than order his own food. In school, teachers want him to “self advocate” and inspite of his IEP, some of his teachers deny him his disability rights and accommodations. He would rather be abducted by aliens and fail a class than ask questions or speak up for his rights. So some just fail him.
Everything that evolves naturally for people is a massive undertaking for kids on the spectrum. Jack’s mind is squeezed in a tiny, defined, space where any effort to push the boundary is painful and impossible.
When we try to airbrush and romanticize it we are doing the greatest disservice to those who are trapped in this condition. Unless people understand the vastness of it, the constant, relentless struggles of those touched by autism, they will marginalise it. How will there be understanding, empathy and support if we try to airbrush the darkness, wrinkles and crevices of their lives so their pain becomes more palatable for everybody else.
If we love our kids with autism, we owe it to them to expose and explain their struggles. Treat autism like cancer. We don’t talk about the beauty of cancer, why should autism be any different. It’s ugly, it’s agonising and it’s terrifying. Stop saying autism rocks, it sucks. Don’t say it’s beautiful when it’s a beast. Shine a light on the immensity of the problem. Because only when we disclose the full inconvenient truth can there be hope and a future for your child with autism.
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