By Malia K. Salaam-Cisse
Isolated, stressed, rejected and ostracized. These are just some of the feelings parents of children with disabilities feel in their sacred spaces. I am the mother of a 13-year-old son who was diagnosed with Autism Spectrum Disorder nine years ago. Over the years, I have discovered that finding a supportive place of worship and community members committed to inclusion can be a challenge. Despite increased public awareness of autism, it remains poorly understood. The children of Black and Latinx American families are still screened less for autism, further decreasing the likelihood of our ability to recognize and understand it. Due to this lack of understanding, my son and I, along with many other Muslim parents and their ASD children, have struggled with being unable to engage in cultural, spiritual and recreational activities in our religious communities.
“Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social interaction, repetitive behaviors, speech, and non-verbal communication… [T]here is not one form of autism but many subtypes, and each person with autism possesses unique strengths and challenges.”
My son, Khari, was mostly non-verbal until age four. He then exhibited echolalia (unsolicited repetition of phrases that one hears) until age seven, and stemming (repetitive body movements). Mostly, he would spin and needed to be held close to be calmed. His school would periodically place a weighted vest on him to soothe and comfort him. Khari would run away from our family, classroom or school without any warning. The worst instance was at age eight when he jumped out of the backseat of our car, ripped off his shirt and shoes and took off running across four lanes of traffic on one of the busiest thoroughfares in the District of Columbia. He had toileting setbacks between ages 8 and 10, which was compounded by digestive issues. And he was prone to violent outbursts: scratching, punching and head-butting me, leaving me no choice but to restrain him.
Many challenges arise from the general lack of understanding and knowledge surrounding ASD in the Muslim community. To name just one, gender separation in sacred spaces poses a challenge for parents of children with special needs. Khari was always quite tall for his age which would garner strange looks whenever he would accompany me to the sister’s section of the musallah (prayer space). Neither my ex-husband nor male relatives frequented the masjid with me, which made attending and participating challenging. There was no one that I could trust to care for my son in the brother’s section, given the likelihood of his hyperactive and unpredictable behavior.
In addition, many masjids’ lack of family-style restrooms made caring for my son difficult. I often had to take care of accidents he might have in the women’s restroom. Sisters were generally displeased by this. To avoid causing discomfort, I sometimes opted to inconvenience the brothers by caring for my son in the men’s restroom while having an elder brother stand guard outside to give us privacy. While I never had anyone come out and blatantly deny me access to any mosque or community activity, I often felt embarrassed and ashamed by any disruptions we might cause.
Many challenges arise from the general lack of understanding and knowledge surrounding ASD in the Muslim community.
Raising a child with autism can be challenging for many parents, and I found that I was not alone in my desire for a shift in both awareness and inclusion in Muslim community spaces. Halimah Davenport, an engineer in the Washington D.C. area, faced significant challenges after her 8-year-old son was diagnosed with ASD. She struggled for years to discover a safe spiritual space, exploring various Islamic and community settings to accommodate her son’s needs. One suburban Imam suggested she “tie her son down” after witnessing one of his more violent episodes. “SubhanAllah!” was the only response she could muster in her shock. Even after finding a more supportive mosque, she still limits her son’s involvement to avoid making others uncomfortable.
Author and researcher, Kaaronia Evans-Ware, also has an 8-year-old on the spectrum. She explained, “For the most part our children are a welcomed sight in the masjid, so at first glance I have experienced what I’ve desired: an overwhelming sense of belonging.” However, her son is verbal and quite vocal, so invariably during Friday sermon, he would exhibit echolalia.
“Even though children all around are making noise, the noise my son is making tends to alarm those nearby…Most often my husband will take him so that I can worship in peace, but this means his time is spent making sure our son doesn’t flail into nearby worshipers among other things.”
In the Holy Qur’an, Allah commands believers to never look down, label or ridicule others because “perhaps they may be better than them” (49:11). I believe creating inclusive community spaces aligns with the framework of Islam and begins with the sincere belief that all community members deserve access and support. Although religious communities are typically not required to make their spaces accessible under the Americans with Disabilities Act, Muslim communities should work to ensure that all services and programs reflect the diversity of its members. Sister Kaaronica adds, “Most of the masjid events are tailored to non-ASD children, so they rarely participate with other children. There isn’t overt mistreatment, just a lack of consideration or concern.”
“Even though children all around are making noise, the noise my son is making tends to alarm those nearby
These experiences are not rare as the ever-growing sea of families experiencing ASD increases. These experiences are not rare as the ever-growing sea of families experiencing ASD increases. As of 2018, an estimated 1 out of every 59 children in the United States has been diagnosed with autism.
Here are a few ways spiritual spaces can be more accommodating and inclusive of ASD children and their families:
- Create awareness through khutbahs, workshops, materials, etc.
- Assign someone to families with ASD children to get a better sense of what accommodations are needed so activities can accommodate all youth.
- Consider having an adopt a family program, whereby trusted elders can be a second pair of eyes for the ASD child during congregational prayer and activities.
- Provide a family restroom that would allow for a parent to care for their child of the opposite gender.
- Create a quiet lounge area that would offer a sensory break for an ASD child and could also support nursing mothers, when needed.
- Look into the excellent work already being done by organizations like Muhsen and MACE.
G-d has promised us that “with every hardship, there is relief,” (94:5). Through His mercy, I remarried, and my husband has been phenomenal with Khari. Our spiritual assembly has become a second family and helps us facilitate smoother transitions when worshiping communally. My son has been accepted and embraced at nearly every masjid in this area. While there may not be specific programs or accommodations for special needs children, the atmosphere is one that is familial and accepting. Recently, there has been an increase in awareness surrounding mental health and wellness, yet parents navigating and supporting children with special needs rarely are included in these discussions. Now is the time to not only create autism awareness, but also to reshape our social and religious culture to one that offers safety, support and understanding.
Malia K. Salaam-Cisse is a visual artist, advocate for returning citizens and proponent of autism awareness. Her mission is to connect people to other people, ideas and resources as a servant of Allah. The Detroit-native and former resident of Washington, DC for 25 years, relocated to Detroit where she resides with her husband, father and son Khari.