A statewide campaign led by two formerly incarcerated New Yorkers with an urgent focus on criminal justice reform.<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n
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These are the stories we do not see portrayed on tv on \u201cThe Good Doctor,\u201d or in \u201cParenthood.\u201d Yet, they exist. And they are tearing families apart.<\/p>\n
People need to be made aware that even when autistic children receive the best of therapies, are in excellent school programs, and live with loving families, incidences of violence can occur.<\/p>\n
And they, and their aftermath, can be devastating.<\/p>\n
I have a fifteen-year-old severely autistic son with accompanying OCD, tics, and intellectual disability. There is no doubt in my mind (or even my husband\u2019s) that of the few people in his inner circle that he loves, he is most attached to me. This is a child who at least once a day kisses me even when he doesn\u2019t want anything and hugs me on a frequent basis. His level of outward affection has slowed somewhat since he became a teen, which I figure is appropriate for his age, but still we have a connection that through insomnia, aggression, refusing to eat, soul-sucking OCD, and this last year a terrible movement disorder that has since greatly resolved and has been diagnosed as tics, has remained true and strong.<\/p>\n
And yet, despite this profound connection, we have survived our own aggressive incidences, some of which I have written about on my blog. Many I haven\u2019t. It\u2019s not because I\u2019m embarrassed. It\u2019s because I want the world to see him as I do- a loving, kind-hearted, intrinsically happy almost-man, despite his challenges.<\/p>\n
I have no doubt that if I wrote more about the times I feared for his safety and for mine, people\u2019s opinion of him would change. More than sharing with the world, I don\u2019t ever want that to happen. I love this kid more than life. I want him to have as many options open to him as the world will provide. Thankfully we have moved beyond the period where it seemed like he was in constant meltdown, but I know many families are not so fortunate despite trying desperately to help their child.<\/p>\n
Their stories need to be told too.<\/p>\n
I\u2019ve since been following the NCSA on Facebook. I saw within a week the backlash had started which I knew would happen, despite their mission statement proclaiming their desire in \u201cPursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders,\u201d which seems to me simply like a beneficial, and incredibly necessary thing to do.<\/p>\n
My eldest son is not like the protagonist on \u201cThe Good Doctor.\u201d He\u2019s not like my other son with high-functioning autism. And yet the truth is, with two sons on opposite sides of the spectrum, I am thrilled when either side is represented. Seeing an individual with autism portrayed as brilliant on a top-rated show can only be beneficial to my youngest son, even if his autism doesn\u2019t manifest in any way like the genius of Shaun Murphy.<\/p>\n
But we need to share our stories of darkness too, in the hopes that awareness will result in better services for those on the severe side of the spectrum, those who cannot speak for themselves, those who require lifetime, 24\/7 care. We need an organization like the National Council on Severe Autism to call attention to an underserved segment of the autism population, the one that nobody writes the \u201cfeel-good\u201d stories about. The one that makes some of us uncomfortable.<\/p>\n
The one perhaps impossible to capture on a television show.<\/p>\n
I for one am thrilled with the creation of the NCSA, and wish them well. I am actively for any organization which can help my kids, and hopefully with time we will see the National Council on Severe Autism as major contributors in the goal of realizing safe, happy and productive lives for those severely affected.<\/p>\n
We can only hope.<\/p>\n
For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\nFollow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n
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