Lucky

Wednesday the school held its annual Halloween parade; the entire school, about 450 kids, teachers, staff and parents gather on the yard for dancing and celebrating in costumes. This is our 6th year at the school and I've been to every one, and during every one the crowd and the noise and the celebrating is too much for my son. He has spent the time either lying on the concrete, legs outstretched, with his head in my lap, or he escapes to the area on the yard where there are no other people. He's only allowed to "escape" if there is another adult with him, and in years past there hasn't always been somebody. I've been there every time, but I've been stuck to my other (NT) child, who would cling to me and cry and not let me leave his side.

This year, my younger child was fine with being with his friends and his class, so I was able to take my older son to the empty area on the yard, where it was quiet and empty and still. I sat there on the bench and watched him run back and forth, flap his hands, jump up and down and whisper to himself, and I was struck by something I'd never felt before: Pride.

In years past, I may have been upset to be separated from the crowd and all the fun, or I may have felt uncomfortable by having singled myself out, forced to the outsides because my autistic child didn't like the crowd and the noise. I may have felt sorry for myself because autism was forcing me to be an outsider when, by nature, I am not an outsider. This year was different, though. I was glad to be outside from the crowd, because it was what my son wanted. I'm sure he wasn't the only kid there who didn't like the crowd, but he was the only kid who was able to escape from it.

I was proud to be the only parent there who had a child who stimmed.  I felt like I was part of a special group that's not like the rest of them; a better group, a more awesome group. We're lucky, because we've got autism. I'm sorry the rest of you don't.

Autism is a Family Dynamic

The numbers currently tell us that 1 in 88 people are on the autism spectrum.  Although this is the number used when organizations are raising funds for autism treatment and research, it is misleading because it doesn’t convey the fact that autism affects millions of people.  Perhaps that’s because we look at autism as a “condition” that affects only the individual when, in fact, autism creates a dynamic that affects the entire family. 

While therapeutic approaches and early intervention is helpful, it isn’t enough.  It isn’t enough because the supports that exist today are focused on treating the individual, rather than supporting the family unit.  In order to move forward and make a lasting impact for autistic individuals, we must create new systems of support that include their family members.

Parents of autistic children are not merely parents.  They’re caregivers, therapists, behavior specialists, and nurses.  An article published online at SleepReview, The Journal for Sleep Specialists, discussed the overwhelming number of autistic individuals with sleep disturbances.  This means that parents are also not sleeping, sometimes going months or even years without a full night of restful sleep because of their child’s inability to sleep.  It’s impossible to function in this capacity without there being mental and physical effects, for both child and parent.

Aggression is a common behavior for many autistics.  Lack of communication or low frustration tolerance can trigger a child to act out aggressively.  Parents must learn to manage meltdowns and outbursts that can include property destruction and physical aggression.  It is not uncommon for someone with autism to bite, hit, kick or punch a parent during a meltdown.  Siblings can also find themselves on the receiving end and have difficulty understanding why their sibling is striking out at them.  Often this leads a parent to turn to medications to help their child manage their moods, which often involves a lengthy trial-and-error period of adjustment, as referenced by the online article, Autism and Medication. 

Because behavior can be challenging and unpredictable with an autistic child, it often limits the ability of families to enjoy outings together.  It’s not uncommon to hear of families that avoided restaurant dining for a 2-3-year stretch because their child simply couldn’t handle being in a noisy, crowded restaurant.  Usually outings must be planned in advance, and kept as short as possible, to avoid a meltdown.  Grocery shopping can be torture for both the child and parent.

It is simply not responsible or reasonable to talk about autism, to speak about supports and services, and to leave the family out of the equation.  Not only is the family dynamic shaped by sleep disturbances, aggression, and unpredictability, there are usually challenges with communication, toileting, and feeding issues.  Family units need support.  They need respite, which is often limited or nonexistent.  In my case, we have not had one single hour of respite for over two years. 

While it is not the autistic person’s “fault” for the challenges that accompany autism, it is not the fault of the family that they are thrown into a physically, emotionally, and mentally demanding position, and often ill-equipped to meet the demands without some form of assistance.  Over time, the demands erode a parent’s ability to function.

That’s why it’s time to change the conversation about autism support.  It’s time we give a realistic picture of the challenges faced by autistics and their family members.  Autistic people need their families, and families need respite so they can sleep and recharge their drained batteries.  They need family therapy to address their feelings and thoughts about autism, without judging or shaming them.  We must prop up the entire family unit to keep them from going under, from being swept away by exhaustion and helplessness. 

It’s time to talk about services that support the reality of being an autistic family.