Sunday, April 2, 2017

World Autism Awareness Day 2017

Today is World Autism Awareness Day, and yesterday began Autism Awareness Month. In anticipation of these commemorations, factions have been debating in the media primarily over two terms: acceptance and celebrating. For those who view autism as a defining personality trait instead of a disorder, acceptance of the condition as well as the person with autism is emphasized. Those parents who seek to make their children with autism better are accused of not accepting autism or their children. This is nonsense. That same faction views autism as something to be celebrated. However, for those dealing with extreme anxiety, debilitating seizures, painful digestive issues, upsetting self-injurious behaviors, and chronic sleep disorders, autism is a multi-faceted illness to be cured instead of celebrated. Do people celebrate cancer or dementia or any other disease that negatively impacts the quality of life for the patients and their families?

While I accept my son and love him unconditionally in spite of the autism that makes his life difficult, I do not celebrate autism or accept that autism determines his personality. We have seen the real Alex as the obstacles of autism have faded over time, allowing us to glimpse the brilliant mind and sweet soul behind the limited language, OCD, intense anxiety, and various physical ailments. Consequently, our abiding love for him drives us to help him continue to improve through behavioral therapy, music therapy, nutritional supplements, medication, gluten-free and casein-free diet, Epsom salt baths, and any other methods we deem safe and effective. We want him to be the best that he can be to make his life better, happier, and healthier. Isn’t that what all parents want for their children?

In many ways, Alex at age 25 is essentially a six-foot-tall preschooler. He cannot be left home alone, cannot dress himself, cannot fix his own food nor cut it into bite-sized pieces, cannot groom himself, and cannot ride a bike nor drive a car. He relies upon us for assistance with nearly every aspect of his daily living. Nonetheless, we are lucky, compared to many parents. After dealing with sleep issues when Alex was younger, he now sleeps peacefully through the night, and so do we. Unlike many people with autism, Alex does not have seizures, does not wander from places of safety, and does not still have to wear diapers. Thanks to thousands of dollars worth of medication and years of therapy, the extreme anxiety that led him to attack us aggressively both verbally and physically is now under control, and he manages his fears through calming techniques. Moreover, unlike many with autism, Alex possesses verbal skills––although still difficult for him––to express his feelings, thoughts, and needs. Because we have watched Alex struggle over the years with all that autism made difficult for him, we know how blessed we are that he has come this far. However, he still has a long way to go before he can be independent.

Since the rate of autism has skyrocketed in recent years, most people now know someone who has autism. However, unless they have lived with a child with autism, they probably don’t know what life with autism truly entails. Certainly, empathizing with anyone who has a particular condition proves difficult unless a person has experienced the circumstances first-hand. Even having raised a child with autism, I am often dumbfounded when I see statistics regarding autism and how it impacts those with the disorder and their families.

In honor of Autism Awareness Month and World Autism Awareness Day, I will go beyond symbolic gestures of wearing blue or lighting blue light bulbs. Instead, I will honor my beloved son, who loves numbers and statistics, and share the reality of autism with some eye-opening data provided by the National Autism Association.

“Autism now affects 1 in 68 children. Boys are four times more likely to have autism than girls. The rate of autism has steadily grown over the last twenty years. Autism is the fastest growing developmental disorder, yet most underfunded.”

“About 40% of children with autism do not speak.”

“Individuals with autism often suffer from numerous co-morbid conditions, including: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sleeping disorders, anxiety disorder, OCD, sensory integration dysfunction, immune and autoimmune disorders, and others.”

“The mortality risk among those with autism is nearly twice as high as the general population, in large part due to drowning and other accidents.”

“Nearly half of children with autism engage in wandering behavior. Accidental drowning accounts for approximately 90% of lethal outcomes.”

Despite these rather grim facts, the NAA also states, “Autism is treatable, not a hopeless condition.”

While April is the designated Autism Awareness (or to some, Autism Acceptance) Month, for many parents and their precious children, every day is filled with autism awareness. Some of us still tie our adult children’s shoes, still remind them to wipe their noses instead of picking them, fix their gluten-free and dairy-free meals and snacks, and can’t help but feel wistful when we see their typical contemporaries enjoying a life that we once hoped ours would know by now. Nonetheless, we continue to do the therapies we know will help, research for better methods and potential cures, and celebrate our children for the milestones they reach, not the disorder that made those milestones more difficult.  Moreover, we continue to hope that they will get better with time. Most of all, we pray to a merciful God to deliver our children from autism and to keep them safe until we find a cure.

“God is our refuge and strength, an ever-present help in trouble.” Psalm 46:1


K. C. Wells said...

The statistics are truly stunning. I truly hope some day that we can fund more research instead of just turning on a blue light. ❤

Pam Byrne said...

I totally agree, my friend! Hope you and your family are doing well.