World Autism Day and the Haqq (Rights) Those with Autism have Over Us All
Posted on Apr 02, 2019
It’s World Autism Day, and as I write this, my 18-year-old autistic son, “D,” keeps coming in and out of the dining room where I’m working today, spinning his “Wacky-tracks” on a pencil and checking to make sure I’m here. He made an appearance earlier in the video meeting I had with my Haute Hijab coworkers back in New York, bending over to see who was on my computer screen.
I promised D I’d make him biryani today, his favorite meal. It’s spring break in our neck of the woods, and while his Baba and siblings are in New York for a mini-spring break trip, D is hanging out at home with me. Trips like that tend to be difficult for D, who loves his routine and relative calm in his life. But nonetheless, no matter how long we’ve lived this life, I still carry some #momguilt when we’re not all together, or when I can’t seem to produce a big fun outing for D.
I’ve chronicled our autism living as a family for eight years here, and this exercise in sharing joyful and difficult truths about D, his autism living and our entire familial journey has been (for the most part) an opening and welcoming thing in Muslim communities, where autism and disability living until recent years was more hidden and not discussed.
If you look around you, I would wager that there is barely a two- or three-degree of separation between you and someone with autism. That’s how many autistic people there are in the world. In 2018, the Centers for Disease Control determined that approximately 1 in 59 children are diagnosed with autism spectrum disorder, and boys are four times more likely to be diagnosed with ASD than girls. Autism is a vast spectrum, with those profoundly affected who face major challenges in their lives (like my son) to those who are higher-functioning, for the lack of a better descriptor.
Here are some basic facts from the National Autism Association for you to digest:
- Autism is a bio-neurological developmental disability that generally appears before the age of three.
- Autism impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.
- Individuals with autism often suffer from numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders and more.
- Currently there is no cure for autism, though with early intervention and treatment, the diverse symptoms related to autism can be greatly improved and in some cases completely overcome.
To that last fact, the word “cure” is highly charged and debatable within autism communities, many of whom in recent years have fought to shift the perceptions and stories of autism from a negative light into a celebration of neurodiversity. Indeed, the prevalence of those who are actually autistic advocating for themselves and reclaiming narratives about autism living has been a great shift in autism advocacy work.
Sheikh Omar Suleiman, who helped found Muslims Understanding and Helping Special Education Needs (Muhsen), made this wonderful video about how Islam teaches us to love people with disabilities. Full disclosure - I am on the advisory board for Muhsen, and I urge you to support their work and programming with your generous donations. Check it out!
Autism is a spectrum, a vast one at that, and the complexities of it could fill volumes beyond this simple blog post :) Today, however, I want to honor my son and center him and my other children at the heart of everything I do. I want us to push for inclusion and love and to see the worth, dignity and respect of everyone in our communities, including our autistic sisters and brothers.
It is a haqq (right) upon us as Muslims; it is a haqq upon us all as humans - whether you are of faith or non-faith.