We Help People And Families Affected By Autism

As a parent of a 20-year-old son on the autism spectrum, I have plenty of personal experience with meltdowns. And I’ve learned that meltdowns are as difficult for the child as they are for the family.

When our children lose control, they are no longer themselves. Our wonderful, loving children are taken over by the anxiety, fear, and confusion of the fight-or-flight response. This response makes our kids try to get away from the problem or to fight it. Called hyper-arousal, this response is the consequence of heightened (or hyper) anxiety that makes a person feel attacked or threatened. And it can turn into a physical altercation that involves biting, hitting, kicking, and throwing things.

Our kids and adult children who live with autism have little control over the level of this response. We may say it’s over the top, but when our children are stuck in this mode, their only goal is to make it all stop or go away.

When youngsters on the spectrum have a meltdown, they can be picked up and taken away to a safe place. If you are in the grocery store when your child drops to the floor or runs, wrap him or her up in your arms and get to the car as fast as you can. This meltdown is controllable—unless you have other children you need to grab, too. And explaining what is going on can add to the chaos. I do not believe the time to educate the public about autism is during a meltdown, because parents need to focus on their child.

The public’s unknowing response to a meltdown can add to the stress level, too. When my son Jake was little, I was too aware of the general public during these tough situations. I took in all the disapproving looks and glances and “heard” all the unspoken comments about what a bad mom I was. There were times when strangers were very helpful. (They grabbed my bags or cleared the way for my hasty retreat.) But eventually, I learned that allowing outside responses to affect me was counterproductive to helping my son. I taught myself to no longer hear what other people said about my maternal skills. Now, I focus on the inner voice that tells me how to get my son out of the environment causing the hyper-arousal.

As our children age and grow—sometimes taller and bigger than we parents are—meltdowns can become scarier. Jake would experience horrible meltdowns around dental appointments and, sometimes, in the primary care doctor’s office. Some visits to the hospital (for primary and dental care) ended with security guards surrounding us to keep us all safe.

The first time this happened, I was very upset. Jake bit my arm (even though I give him as much physical space as safety allows) so my emotions got in the way. The second time, I stayed calm, and the meltdown didn’t last as long. From this experience, I learned that my mood and reaction can affect Jake’s response, so I work at maintaining a calm response.

When Jake lashes out at me, he always apologizes afterward. I know that he would never lash out unless something felt wrong to him. So, I strongly believe that punishing my son for having a meltdown—even when I get bitten—is not a proper response on my part.

Instead, once we move through the meltdown, I talk to Jake about more appropriate behavior. We have repeated conversations over many days about his behavior. The goal is to help soften his fight-or-flight response.

In summary, seeing our children act completely out of character is scary and upsetting. I think, as a parent, it helps to understand the lack of control our kids have over their bodies’ response to anxiety. During these difficult times, it’s helpful for me to ignore shameful or embarrassed thinking and to focus laser-like attention on my son and his needs.

It’s also helpful to desensitize our kids to the situations that make them anxious, such as the mall, grocery store, or a doctor’s office. In the case of doctor visits, I suggest working with your child’s medical providers to create a plan that eases your child’s anxiety. When we now visit Jake’s primary care doctor, we wait in an exam room instead of the waiting room.

Since we can’t foresee all the possible triggers, consider bringing a family member or friend who can help carry your bags or get the car while you handle your child. And continue to teach your child the appropriate behavior for an anxiety-creating situation.

I also recommend distraction. Bring books, the DVD player, or whatever else your child loses him- or herself in. And praise your child when he or she behaves well every step of the way. Excellent behavior is worthy of high praise.

Sun contributor Jen Nardo is a parent mentor and long-time Autism Delaware™ volunteer as well as a dedicated member of Autism Delaware’s newsletter committee.

This text was edited for consistency of language and message and appears in the summer 2018 issue of the Autism Delaware quarterly newsletter, The Sun.

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