Autism Awareness Gets Real

As everyone knows, it’s Autism Awareness month. It’s all over the media. Many of you may have seen blue lightbulbs on your neighbors’ porches. It’s a month that families all over the world, and right here in Vermont, strive to not only bring awareness of autism to our communities, but acceptance, understanding and inclusion.

Inclusion is not proximity. Inclusion is not simply having an autistic child in the same classroom as his or her peers. Inclusion is not just adding a disabled child to a team sport. Inclusion is striving to make these experiences as successful for a challenged child as it is for a “normal” one. Inclusion is understanding that we are ALL different from one another- autistic or not. I am different from you. You are different from me. Neither are “less.”

Imagine, if you will, being a child in which the world functions in a way that you don’t understand. Imagine that the sounds are too loud, the lights too bright, the smells too intense. Place yourself there, for just a minute… Imagine that you are on a playground watching your peers play a game you know how to play. You want to play. You want to run over and join them and show them that you can be a part of things too, but you don’t know how. You don’t know how to speak the words. You’re trapped within yourself, longing for someone to come invite you, to make it safe.

No one comes.

Imagine how you feel. Imagine how your mom must feel, unable to make it better, unable to wave the magic wand that all mothers wish came with our children to make all of your struggles go away. She can’t and her heart breaks.

A few hours later it’s time to go home. It’s a lot different there. There isn’t someone to help you every second of every day because you have siblings. The sudden change is more than you can handle after everything that happened at school. You don’t have a way to express how you feel. You’re body is vibrating with the anger you held in all day. The teachers don’t understand you. You want to learn but they don’t know how to teach you. Your peers, who you desperately want to be friends with, ignore you. The lights over your head sounded like airplanes. The smells of the cafeteria made you sick but you were forced to sit still. All day someone demanded that you look in their eyes when they talk to you. They don’t know how uncomfortable it is.

You get home and explode. Home is safe. Mom understands why you’re angry. You don’t mean to be destructive, you just can’t hold it in anymore. Glass breaks. Lots of it. You’re bleeding. Mom tries to help you calm down; tries to treat your cuts but you can’t stand the touch. You run. You don’t know where you’re going. You don’t know that it’s dangerous. You don’t notice the cars driving down the street. You just run. Run from it all.

Now, imagine that you are the mom in this scenario.

Imagine that you spend your life fighting, begging, pleading, crying for someone to understand, just as your child does. Imagine that the services you need to be able to give BOTH of your children as much of a normal life as you can, are denied, cut back, refused. When you ask why you are told that P.C.A (personal care attendant) time can’t be used for safety or supervision. You wonder how you are going to be able to shower because you can’t leave your child alone without risk of harm. You wonder if you will ever sleep again. You wonder how you’re going to get through the day, never mind tomorrow. You cry in defeat and anger at a system that just does not understand.

A few days later, after exhausting all resources, someone tells you that your child qualifies for residential placement, since you cannot possibly meet his needs at home. You are so stunned you can’t speak. You are angry, hurt, and absolutely bewildered. You don’t want to send him away, you just want some help, some care, some understanding. Why is that so hard?

This is what families all over Vermont face, every single day. This is what we’re talking about when we say that more than awareness, we need understanding and acceptance.

In a state that can easily spend a half of a million dollar to “assess” VT Health Connect why are we so willing to split our families apart instead of giving them the help they so desperately need and deserve? Evidence based treatment that should be covered under the Autism Treatment Bill, passed 4 years ago, are not being provided because Medicaid reimbursement rates have been cut and designated agencies cannot afford to provide them. Somehow the powers that be think it is cheaper to send our kids to residential care than it is to care for them right here at home.

The average cost of a year of residential care is $200,000 and can be as much as $400,000 for 24/7 one on one care and other services.

The average salary of an A.B.A therapist is $33,000 and $22,000 for a P.C.A, according to Glassdoor.

You do the math.

There is no logic. There is no heart.

This is a multi-faceted problem with no easy solution, but there is a solution. We need to come together and find it. Too many of our neighbors are suffering. Too many of our children are unable to get the help they need to become as independent as is possible. Too many parents are faced with impossible choices that they wouldn’t be faced with, if they had adequate community and organizational support.

We, as a community, are not asking for pity. We are asking for help. We are asking that the great State of Vermont rise to it’s commitment to put our families first. Will you join us?


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