April is Autism Acceptance Month
April is Autism Acceptance Month
Let's collectively make room for diversity to exist and thrive.
April is National Autism Acceptance Month. The Autism Society describes the purpose of the month this way:
Autism Acceptance Month celebrates and recognizes the many diverse and varied experiences across the Autism spectrum. For years, those in the Autism community have advocated to advance April beyond awareness and forward into acceptance. That’s because our community knows – words matter.
It matters that we speak with acceptance of individuals for who they are, in ways that honor their experience, strengths, and challenges. It matters that we not only talk of acceptance but act on it too.1
Words matter—I like that. You see, I have three kids and my two boys have Fragile X Syndrome—a mutation of a single gene on the X chromosome—which causes their rather severe intellectual disabilities (like being non-verbal), behavioral and learning challenges (like anxiety, aggression, and ADHD), and various physical challenges (like epilepsy).2
Both of my boys are also on the Autism Spectrum. Fragile X Syndrome and ASD are often co-diagnosed.
In the 15 years I’ve been a dad our family has had plenty of experiences where acceptance—let alone awareness—was hard to find. The truth is, families like ours are all around you. And if you can’t see us, it’s not that we don’t exist. It’s just that a lot of the time public life and organizations are structured in ways that preclude our involvement. We end up isolated.
So I’d like to share some definitions, resources, and data in honor of Autism Acceptance Month.
What is autism?
According to the CDC,
Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges.3
Think of ASD as an umbrella term under which a lot of different expressions and experiences are categorized. This underscores the importance of listening and learning from each individual and family regarding their challenges, assets, and needs, as they are always different.
How prevalent is autism?
The CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network estimates around 1 in 36 children have been identified as on the autism spectrum. This is up from 1 in 44 in 2018 and 1 in 54 in 2016.
Some of this increase is due to greater awareness and screening. We find more of something when we improve or expand how we look for it.
ASD is reported to occur in all racial, ethnic, and socioeconomic groups and ASD is nearly 4 times more common among boys than among girls.4
Is being diagnosed as on the autism spectrum a bad thing?
No. For instance, the increasing number of stories from folks who were diagnosed later in life show how a diagnosis can lead to a marked increase in self-understanding, self-compassion, and empowerment. And in the case of my boys, it has allowed us to make use of various services to build skills and achieve growth that would be otherwise much more difficult.
However, it can be hard for some who are diagnosed and/or their families. I would be lying if I claimed receiving a diagnosis for our 2 year old first born child—after months and months of delayed milestones, unique challenges no one around us was experiencing, and parental worry—wasn’t difficult.
I’ve published two peer-reviewed studies concerning religion and childhood disability. The first examined the experiences of mothers of children on the spectrum. The second identified which childhood chronic health conditions were most strongly associated with never attending religious services.
I just collected data last fall that will allow me to expand my research on Americans’ attitudes toward disability and religion. I’m excited to share more of what I’m finding in this space in the future.
Does each person on the autism spectrum have something they are exceptional at?
While many folks on the spectrum are exceptional at various things, being on the spectrum does not bring with it some special skill or talent. Everyone on the spectrum is good at some stuff and bad at other stuff. And just like in the general population, there are always some really talented people.
What has it been like for you to parent two boys on the autism spectrum?
That is a very complicated question and one that I can be more or less willing to answer depending on where we are at on our journey. I’ve shared a bit about one portion of our journey here, particularly our experiences within faith communities through the years. Some of our deepest wounds have come from faith communities. These have also been spaces where we’ve found support and moments of healing.
One thing I’d like to point out—I’m not in the same place as I was at the time I wrote the column above in The Washington Post. This is a journey and journeys change us. One hope for Autism Acceptance Month is to recognize everyone—those on the spectrum, their families and friends—as on a unique and ongoing journey. Let’s try to provide everyone space to grow, develop, change, and maybe even take a step to the left, right, or backwards sometimes.
It is difficult to fully communicate my experience caring for two boys with autism spectrum disorders. Most days I just don't think about it and merely do what I have to as needs present themselves. It is usually hard and to be honest I can resent it some days.
It has brought emotional, physical, and spiritual pain. It has brought exquisite joy and wonder.
I feel comfortable answering the above question in this way, at this particular moment in time: parenting my two boys has been difficult, rewarding, challenging, inspiring, mind-numbing, hilarious, mystifying, sweet, traumatic, and beautiful. And hard. And good. And you get my point by now…
So what does autism acceptance mean to you?
I leave you with a scene: my spouse making laps around a yard, holding my 15-year old and 10-year old sons’ hands, quietly reciting a book from memory.
You see, she’s memorized dozens of children’s books so that when my boys are experiencing anxiety, fear, and struggle, she can meet our sons’ needs in the moment, bring them comfort, and help them navigate their emotions and the situation.
Serving them. Loving them. Meeting them exactly where they are, with what they need, wherever they are.
They deserve to live and exist in this world, as they are. And she makes all the room necessary in her life so they can.
That's autism acceptance.
https://autismsociety.org/acceptance-in-action-honoring-autism-acceptance-month/
https://fragilex.org/understanding-fragile-x/fragile-x-101/
https://www.cdc.gov/ncbddd/autism/ind
https://www.cdc.gov/ncbddd/autism/data.html