Local Families Share Advice on Autism
April is Autism Awareness/Acceptance Month.
Last week, the Centers for Disease Control and Prevention (CDC) released harrowing news pertaining to the accelerating rates of autism in our country—about 1 in 88 children (and five times more boys than girls) has autism. And the prevalence of the condition has risen nearly 80 percent over the past decade.
The CDC study collected data from 14 states, including Maryland. The survey found vast unexplained disparities between various states and among different ethnic groups and sexes. For example, the prevalence of autism in Hispanic children is two-thirds that of white children, but it is rising faster in this group and amongst African-Americans than in Caucasians.
Some argue that the discrepancies are a result of better identification of autism cases which in turn, contributes to the higher number of kids receiving a new diagnosis. But whether it completely explains the increase in the proliferation of new cases is quite controversial and subject to intense debate.
Here in our own community, the number of services and programs offered by Fairfax County Public Schools (FCPS) to children on the autism spectrum reflects the growing population of impacted kids.
Within Cluster 4 alone, the following schools offer special programs:
- Preschool Autism Classes (PAC): Island Creek ES, Riverside ES, Stratford Landing ES and Washington Mill ES;
- Elementary Level Services: Belleview ES, Fort Belvoir ES, Fort Hunt ES, Groveton ES, Gunston ES, Island Creek ES, Lane ES, Lorton Station ES, Washington Mill ES and Woodlawn ES;
- Secondary Services: Carl Sandburg MS, Walt Whitman MS, Mount Vernon HS, Pulley Center, and West Potomac HS.
In addition to our school system offering specialized curriculums, many other resources exist within our community to better support families impacted by autism spectrum disorder (ASD). Two prominent local support groups are the Autism Society of Northern Virginia (ASNV) and Parents of Autistic Children, Northern Virginia (POAC).
Recently, ASNV sent out an email to its members stating, “April traditionally has been declared Autism Awareness Month, but this year the Autism Society of Northern Virginia (ASNV) and other advocates around the country are calling for the autism community to rebrand it Autism Acceptance Month. ... The recommendation approved by ASNV's board is intended to demonstrate that awareness of autism already has been achieved due to skyrocketing prevalence rates in recent years. … ASNV says the focus now must shift to educating the public about the need to accept people of all ages on the spectrum, and raising awareness about how autistic children and adults can lead productive, fulfilling lives.”
Spurred by this motion by ASNV, I recently queried the list serv of POAC and asked its members: “If you could give parents of neurotypically-developing (NT) kids one piece of advice in terms of what you would like them to know about your life or your child, what would you offer?"
Here are some of the responses I received:
- How about that a morning that only involves one screaming tantrum is considered a good morning!
- I've had some fun experiences interacting with the public with regards to my son with high functioning autism (now 8). My son used to have great difficulty with haircuts. He was (and is) fairly defensive about anything around his head and mouth and something about the hair falling around him and the sound of the scissors as it cut near his ears just drove him wild. We were at our normal place getting his haircut (by a stylist that was deaf, so his screams didn't really bother her), and he went into full freak-out mode. He ran for the door and it was all I could do to contain this four-year old dervish desperately trying to run out into traffic. I could barely hold on to him and this mom comes right up in my face and says with that mommy superiority that comes so easily to parents that think their child is perfect, "So when did you know?" I'm assuming that she meant autism, because I looked her straight in the face and rolled my eyes at her. I wish I'd had a snappy comeback, but really in those moments you rarely do. I think I would recommend that parents of neuro-typically development kids try not to judge during a behavior outburst, and please don’t engage in a faux-psychologist rapport with someone who clearly has their hands full.
- I would like other parents to know how hard my son is trying to make friends. I would like them to encourage their NT kids to also try hard to be friends with my son. It takes two to be friends.
- My child always finds "good things" in other people. He comes home from school every day and tells me the "good things" about those who have come in his path. He astounds me with this beautiful quality of finding the good in all...There have been times when he has overheard a word and will ask its meaning: "Mom, what does 'strange' mean ?" or "Mom, what does 'weird' mean?" If everyone looked for the "good things" in all people, I believe those words and others like them could be replaced with words like: "Mom, what does 'amazing' mean?" or “Mom, what does 'fabulous' mean?”
- Autism is not contagious! Encourage your child to play with children who have autism. A single friend can make a world of difference.
- It would be nice for others to know that “our” kids want friends just as much as the next person and that they hear all the negative comments and see the stares. Often it takes just one person to become their friend for their spirits to soar. It would be nice too that their peers would do things with our kids outside of school and have it not be planned by the parent—but for the kid to remember, “It would be nice to have so and so over...” That a simple meal at a fast food place would just thrill them–the concept of less is more. Often my kids don’t get the invitations to birthday parties that other kids do. 3 out of my 4 kids are on the spectrum.
- I can count on one hand the number of times my child has been invited to a birthday party or social event and he is now 17. The people who have included him over the years will always hold a special place in my heart. I realize it can be intimidating to reach out to a child whose condition isn’t fully understood. But I welcome a phone call from another parent who might have concerns about including my son and want advice on what steps to take to best ensure a successful outcome. And I have no problem accompanying him or hosting kids at my house if that makes everyone more comfortable. But please, whatever you do, don’t just ignore, avoid or shun us. That’s what hurts the most.