10 Things Mothers and Caregivers of Children with Autism Want You to Know | SoundVision.com

10 Things Mothers and Caregivers of Children with Autism Want You to Know

April is World Autism Month and National Autism Acceptance Month. According to the Centers for Disease Control and Prevention (CDC), autism spectrum disorder (ASD) is a developmental disability that affects communication, behavior, and social interaction. Current CDC estimates indicate that about 1 in 31 children aged 8 years (3.2%) have been identified with ASD in the United States. The disorder occurs across all racial, ethnic, and socioeconomic groups and is more than three times as common in boys as in girls.¹ While these statistics reflect the broader population, they also point to a reality within the Muslim community. Disabilities, including ASD, are present in many Muslim households. In 2021, the Institute for Social Policy and Understanding (ISPU) reported that one in three American Muslims has an immediate family member with a disability.² This month serves as an important reminder for all of us in the Muslim community to promote understanding, inclusion, and acceptance of individuals on the autism spectrum.

Autism acceptance begins with recognizing not only those living with ASD but also the loved ones who support them. Mothers are often the unsung heroes, carrying both the physical and mental load of raising their children and guiding them into adulthood. Many navigate systems with limited resources, advocate for their children in spaces where autism is misunderstood, and bear the emotional weight of being their child’s primary support and voice. The challenges these women face include exhaustion, uncertainty, and, at times, a sense of being unseen within their own communities. 

Our tradition teaches that patience in the face of hardship is rewarded, and the perseverance of caregivers of children with autism is not lost with Allah. Yet that reassurance does not lessen the daily realities they face. This is where the Muslim community must become more informed and responsive, offering support through understanding, inclusion, or even something as simple as a welcoming smile.

Following the Prophetic Example

Our beloved Prophet Muhammad, peace and blessings be upon him, was attentive to the needs of the most vulnerable in his community. During one of his early encounters with the Angel Gabriel, he expressed concern for the people he was sent to guide. He said:

“O Gabriel, I have been sent to an unlettered nation, among them are the disabled, the elderly, young boys and girls, and men who have never read a book.” (Sunan al-Tirmidhi 2944)

Awareness of differing needs was present from the very beginning of his mission. He knew that some members of the ummah required more care, patience, and greater consideration, particularly children and those with disabilities. In the spirit of this beautiful narration, I reached out to mothers and caregivers of children with autism in my local community and asked them what they would like other Muslims to know about their experiences. 

The following are their responses, shared in their own words:

1. Families of children with special needs require compassion, inclusion, and tangible support from the Muslim community.

“Before I was a mother to autistic children, I was, and still am, alhamdulillah, the twin sister of a deaf individual with intellectual and learning disabilities. My perspective has been shaped since the cradle. There is so much to say, but I will focus on one point, as requested. Our scholars across fiqh agree that special needs children are constantly surrounded by angels, that evil does not touch them, and that they can be a door to Paradise for their parents and families. They are also a test for those who encounter them. Despite the emphasis on compassion in our deen, adults, not children, but adults, are often quick to respond with fear, confusion, impatience, anger, or even disgust toward our children.

I wish our community would accept our children as the gifts they are from Allah and show respect and support to their parents and families. Islam teaches that the most vulnerable in society must be cared for, and that they have a right over the time and wealth of those who are healthy and able. Yet many families with special needs children lack support, are excluded from the masjid, and live with ongoing worry about what will happen to their children after they pass away. I once left my local mosque in tears with my autistic boys.

I invite our community to reflect on the role each person is currently playing, and the role they could play, in honoring the rights of the vulnerable and marginalized, and in offering real support to those who need it.”
— Arfa, Northern Virginia

2. Parents do not need judgment or intrusive questions; they need understanding and support.

“I wish people would accept autistic children and support their parents rather than asking weird questions.”
— Aunty, Woodbridge, VA

3. Autism presents differently in every child.

“I would like Muslims to know that autism exists on a wide spectrum, and not all autistic children look or act the same. Many may struggle in some areas but excel in others.”
— Anonymous, Hagerstown, MD

4. Attention must be given to support the Islamic education of children with autism. 

“We would like to know how we can introduce Islam to autistic children.”
— Zohra, Aldie, VA

5. Moments that may appear disruptive are often signs of distress. 

“Public meltdowns are not misbehavior. They are moments of overwhelming stress. In those times, families are doing their best. If you cannot help, please do not stare.”
— Ade, Reston, VA

6. Our mosques must become safe spaces for children of all abilities.

“Make the masajids a safe space for all children, of all abilities. Children with autism are still children with different abilities. Do not push them to the back. Keep them in the rows. Be kind, be accepting, and be welcoming. Remember that Allah guides them, and they are constantly overcoming challenges we may not see, whether it is noise levels, sensory overload, or overstimulation, just to come and worship. They should be treated with dignity and respect.

Children with autism grow into adults with autism. Be kind and emulate the character of the Prophet Muhammad, peace and blessings be upon him. Teach your children to be kind and to embrace differences.”
— Ndeye, Blount Hampton, VA

7. Small acts of kindness can make children feel safe and accepted.

“Just be kind and let them jump or flap their arms. They are not bothering you. Sometimes they may repeat after you, but that does not mean they do not understand what you are saying. Engage with them as best as you can. Welcome them. If they come to you, it means they see you as a safe space.”
— Neeha, Arlington, VA

8. Autistic children are aware of how they are treated, even when they cannot express it.

“I hope one day people will be kind and inclusive toward the autism community, and understand that autistic individuals are often more sensitive to comments, facial expressions, and body language than a neurotypical child. Just because they cannot communicate does not mean they do not feel hurt.”
— Anonymous, Springfield, VA

9. Cultural misconceptions can undermine Islamic values.

“It is difficult to limit this to one point, but as a mother of an autistic child, it would help if Muslims made an effort to separate cultural myths from what our religion teaches about individuals with autism and special needs. These misconceptions can lead to stigma and misunderstandings that further isolate our children and families.

By seeking accurate knowledge, showing compassion, and treating autistic individuals with dignity and support, we can build communities that reflect the mercy and justice at the heart of our faith.”
— Ameena, Dumfries, VA

10. Some children require lifelong care and advocacy, and their needs are often misunderstood.

“My daughter is profoundly autistic and, at 19 years old, is nonverbal. She requires 24-hour care and cannot read, write, or advocate for herself, like 30–40 percent of classically autistic individuals in the United States. Her older sister and I wrote the first English book about classic, profound autism in Muslim children 15 years ago. It is called Hind’s Hands: A Story about Autism.3
— Maryam, Baltimore, MD

 

As we reflect on these deeply personal words from mothers and caregivers, they should open our eyes to a reality in our community that often goes overlooked. What are we doing to ease the burden for these families? Support is not only a collective responsibility, but an individual one. Each of us has a role to play in creating spaces where children with autism and their caregivers feel seen, respected, and welcomed. Autism Acceptance Month may serve as a reminder, but the work does not end when the month is over. Our commitment to compassion, awareness, and action must be continuous. 

 

  1. https://www.cdc.gov/autism/data-research/index.html
  2. https://ispu.org/reports-and-analysis/disability-in-the-muslim-community/
  3. https://www.amazon.com/Hinds-Hands-Story-about-Autism/dp/1935437763

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