What is severe autism? Severe autism is looking into the eyes of a child who does not return your gaze, but may see more than we do. It is handing a toy to a child, but the toy appears uninteresting, but somewhere inside, he’s interested. It is telling your child you love him, though he appears not to listen, but is hearing every word you say. It is hugging your child as they recoil, but at the same time need your touch. It is also sacrifice, suffering and solidarity. And alienation, affliction and anguish, wrapped in a tight ball of silent alarm.
Severe autism, for the individual, is a brain on hold, on hope, in low and high gear, darting up, down and around a foreign landscape, shifting shapes, patterns and smells. Severe autism, for the family, is rising every morning and facing the unknown. It is fear of failure to help or protect your child. Anger rooted in a quest for peace, justice and freedom in chaos, injustice and oppression. It is asking. Will today be challenging behaviors, incessant chattering, financial woes or fading friends and family? It is pondering a breakthrough in autism. It is finding antecedents, triggers and etiologies that fuel extreme autistic behaviors.
Severe autism is revolving inside an autism spectrum disorder that has morphed into something radically different than what was first described as severe autism and trying to explain to people your child is NOT the RAIN MAN. And gluten free foods didn’t cure our child. Severe autism is being shocked. Do medical schools teach psychiatrists, psychologists and neurologists to understand severe autism? Or are they content to oversimplify and undertreat severely-autistic children? Are allegedly ‘cured autistics’ an example of misdiagnosed children? Is severe autism curable or treatable? Treating severe autism takes time. Professionals are always in a hurry. Priorities.
Treating severe autism is not yet a human rights or social justice movement. Who takes care of the severely-autistic? Are there programs to handle their delicate and complex needs? Will state agencies ever stop cutting funding for developmentally disabled?
Severe autism is fighting. Have you ever had to fight so hard for something your child needs, you thought you’d faint? You make phone calls. You fax. You attend meetings. You argue. You use logic and reason among unreasonable and illogical people. You find apathy, indifference and cringe under the crushing burden of convincing the unconvincing you are living in a constant emergency.
Severe autism is proving, over and over, your child needs help. Not tomorrow. Not next week. Not next year, at another meeting.
Severe autism is looking into humanity and searching for a shred of compassion. Every year it gets worse, as if policy makers and players want you to just go away. Tell a few jokes. Move on. Let them be. Severe autism is painfully complex. Pampered people don’t like pain, especially you and your autistic child’s pain. These people, these professionals, not all, but you know who, yes, they want severely-autistic children and adults to get well fast, and if they don’t, keep your distance.
When you have to tell your story, they prefer you tell your great-grandma. Don’t post You Tube videos or BLOG about severe autism.
Damn it, you’re making the great and all knowing autism saviors look bad. How dare you. WE say we know what severe autism is, though we willfully know little about severe autism and have spent less than a month of our entire career with a severely- autistic person. And guess what? We don’t have to know or really care in this show: because severely-autistic are mostly silent and we’ve got our agenda and if only people like you-- mom and dad and severe autism advocates-- would just shut up, we could tickle endless ears in our staged sagacity. We could attend and create--without guilt-- our autism task forces, congressional hearings, seminars, symposiums, press conferences, forums and discussions. We could go on talking and writing forever, in the absence of progress. Nobody would question our authenticity or effectiveness outside your insider scrutiny. Damn you severe autism advocates. Can’t you all just go away?
Can we? Should we? No, sorry, we can’t. At some point, the false realities of severe autism shown to the public by an ill- informed media will fade. And the realities of severe autism will shine, so that those who have been hidden and hindered will be heard and helped.
Parents of severely-autistic children have had enough of feel good façades. We can’t stand silent as a parade of imposters infiltrate the autism community. Nor shall we bow to the self-appointed autism elite. We’ve survived too much to play that game. We’re in the trenches. We know how to fight. Remember no pain, no gain? Severe autism is painful. By lifting the weight of it all, there is much to gain.
Yes, severe autism is getting punched again and again, and getting up, bleeding, but confident there is hope and healing ahead. Confident that love is advocacy and protection and everything we strive to achieve for our children with severe autism will someday come to fruition.