Skip navigation

Calls to Action

We Are Part of 'The System,' Too


This post is by Lou Melgarejo, a married father of three whose eldest daughter Bianca (7) is autistic. In 2011 he started Lou’s Land, a blog from an Autism Dad’s perspective. A television director by trade, Lou used what he knew to create the autism awareness video “Fixing” Autism for which he received the “Speak Out” award from Autism Speaks for going above and beyond in raising autism awareness to the public through the media. This was originally posted here on Huffington Post.

I have watched over the past few days as friends from the autism community have expressed horror and confusion at the attempted murder of Issy Stapleton, allegedly at the hands of her mother, Kelli. There are people trying to make sense of madness, justify the inexcusable because of a broken system, vilify somebody who is clearly mentally wrecked, and confusing empathy for a parent in a desperate situation with sympathy for an alleged attempted murderer.

Most are hurting too much to hear what others are actually saying and too busy reading unintended meanings into words of grief and desperation to have a dialogue. So I am not going to write specifically about Kelli StapletonDorothy Spourdalakis or Elizabeth Hodgins, as much as I want to address the issue of depression and despair that some parents of autistic children feel, how to best manage those feelings and hopefully keep them at bay.

Let me make this perfectly clear. There is NO justification for killing an innocent child.

When a story arises in which a parent tries to kill their autistic child, right away people want to talk about "the system" and how it is failing. The system IS failing these kids. But what we must understand is that parents are PART OF THE SYSTEM. WE are the last line of defense. WE are the ones that have to stay strong and fight on. We are the one part of the system that is supposed to be RIGHT. We push for insurance reform, we push to end discrimination, we battle bullies whether corporate or on the playground, and we tip the scales from hate and scorn to love and acceptance. If our kids cannot place their faith in US, then who can they trust?

In order to not become part of the failing system, parents must take care of themselves. I tell parents of autistic children constantly that their physical and mental health should be their top priority. There is a reason why when you receive the pre-flight instructions on a plane that they tell you to secure YOUR safety first. You cannot insure the safety of another if you are not in a safe place yourself. You are going to feel selfish looking out for yourself. Trust me, you are not. You are doing the most loving thing that you can do for your child; you are securing a happy and healthy attitude for yourself and maintaining a loving and safe home.

Some of the following examples may seem simple, but sometimes we just need a friendly reminder to get back to the basics and focus on what is important in life.

Make a date night with your significant other. Get out of the house for some one on one time but if you can't, then get the kids to bed and put down a blanket on the living room floor. Have a picnic in your living room while watching a movie or listening to music. Have some wine, be romantic... no autism talk. If you don't have a significant other, then make it a night out with friends. Cut loose and have a good time, even if it is only for a couple of hours. Make sure to LAUGH.

Continue reading here

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.