“He (Musa) said: ‘Oh my Lord! Expand my breast for me and make my affair easy to me, and loose the knot from my tongue (that) they may understand my word … (Quran 20:25:28)”

One and a half years ago, I took the plunge and began sharing our son’s life lived with autism, my struggles with keeping strong in my Islamic faith and residing at this intersection of faith and autism. With a post on Ramadan Despair, I shared what was then my lowest point, and I had no purpose in laying bare our struggle other than I was tired of feeling alone.

And, if I was tired, I figured there were others out there who were tired of feeling alone too. The autism community is a passionate, active, fierce, supportive and combative group with a thousand different thoughts and approaches to autism spectrum disorder (ASD). But, we get each other (for the most part), what we are all going through. It may be a spectrum, and no two individuals with autism may be the same, but we are a tribe. These are my people.

But what about the Muslim community? Where are the individuals with autism and special needs in the Muslim community? Where are the Muslim families on this autism journey? Last year the Centers for Disease Control put the statistic at 1 in 88 – as in 1 in 88 children have ASD. Just last week that number was bumped up to 1-50. There has to be Muslims dealing with autism. My family can’t be it.

And we are not. In sharing our story, I’ve made numerous connections with others also living at the intersection of Islamic faith and autism. And, even more connections and friendships within the general autism community – the silver lining in all this, we say to each other.

And so as April rolled around again and World Autism Day came and went, I saw a growing sentiment amongst members of my autism tribe – that Autism Awareness Month is a has-been. If 1-50 school age kids have ASD, then we are well past the stage of making people aware of autism and must focus on acceptance and action.

That’s great. I’m all for that. Except that when it comes to the American Muslim community and beyond, we are nowhere near action. We are light years behind action. We are in the beginning stages of awareness. For a community well versed in fighting against Islamophobia, in running sophisticated campaigns to combat NYPD surveillance of Muslims or to reclaim the meaning of the word “Jihad,” engaging in social and political activism, hotly debating topics like homosexuality in Islam, equality in marriage, providing better space for women in our mosques, even whether “breathable” nail polish really is wudu-friendly – what are we doing for our Muslim families dealing with special needs?

We are committed to owning our own narratives and taking action in many worthy arenas. But what about the most vulnerable in our communities? What of their families? What about the spiritual struggles of families with special needs — embracing them, including them, connecting them to resources, helping them in the myriad of ways that they need help? What are we doing for Muslims dealing with special needs?

Not much. And that’s unacceptable for our Ummah.

Where is the Awareness?

Recently, at the first meeting of a support group for Muslim families with special needs organized by SMILE for Charity in New Jersey, parents of children with autism, Down Syndrome and other special needs broke down in tears as they shared stories: Stories where Muslims asked them what sin they must’ve have committed to be punished by Allah with a special needs child. Or a mother asked where the community support is for her as she ages? Soon she won’t be able to care for her special needs child. Or, the divorced mother working two jobs to provide for her special needs child, desperately wanting some help, some respite.

Salim Patel, chairman of SMILE, chronicled this first support group meeting for Altmuslim at Patheos. He said at first he felt like he didn’t belong, but the parents welcomed him warmly. “It was overwhelming,” he told me. “Our community simply is not doing enough. We are so, so behind, and this is just not within the teachings of our faith – to not be aware of what is happening with fellow Muslims in our community, to not take action, to not help.”

I hesitate to point fingers at an entire national Muslim community, to say that we are systematically failing our Muslim families who have special needs children and Muslim adults with special needs. Sweeping statements are problematic without the data to back it up.

But, I have been raising our son Lil D (with my husband and family) for nearly 13 years. And, in my journalistic career where I have covered Islam and Muslims in America for more than a decade – I’ve made a vast amount of connections within the Muslim American community.

I have yet to find an organization, a pilot program at a mosque or community center, an Islamic school that willingly serves and accepts special needs students, or even mosques or Muslim community centers that organize respite services or partners with local special needs organizations to offer informational sessions. I’m not a regular Jummah prayer attendee, but here in my local community of Richmond, VA, I have never heard a khutbah (sermon) addressing the importance Islam places on helping those who need our help most.

Forget Richmond, Va. Have you ever heard such a khutbah in your local mosque anywhere? Please, correct me if I’m wrong.

There is something seriously wrong here, folks. And I’m fed up. I acknowledge that our community is a few decades behind in support, funds, managerial and organizational skills than our fellow Christian and Jewish communities. And, we are making inroads to establish ourselves as a presence in this country and be that backbone of support.

I look to the educational and spiritual gains of the Zaytuna Institute and the Ta’leef Collection, the groundbreaking charitable work of Islamic Relief USA and SMILE, political and social activism from Council for American-Islamic Relations (CAIR) and Muslim Public Affairs Council (MPAC) as well as so many, many other fine national and local initiatives and programs addressing so many facets of Muslim American life. Masha’Allah. Alhumdullilah.

But, what about our special needs population? We don’t even have the data examining how many Muslims in the United States are dealing with special needs. We aren’t seeking partnerships, we aren’t studying best practices. We aren’t doing an iota of what we need to be doing. And families are feeling left out, spiritually bereft and disconnected. When will that change? How will that change?

In the autism community, we are moving on to action. In the Muslim community, we don’t even have awareness down yet.

Exceptions to the Rule

There are some groups though, some extraordinary individuals in the American Muslim community doing some marvelous things for families with special needs. Some on a large scale, some in a very quiet, local ways.

I love that SMILE has taken such a simple, yet important step of setting up a monthly support group for parents dealing with special needs. Just the act of coming together and sharing stores, sharing what helps, what resources are out there is so crucial.

Last spring, the Islamic school my niece attends in Maryland, al Huda, hosted a number of activities for Autism Awareness month in April. It’s the first I ever heard of an Islamic school doing that. My niece proudly spoke of her cousin, Lil D, and all that he is able to do as well as the challenges he faces. Those are the beginning steps of awareness we so need in our community.

And, what I hold dearest — our family has twice attended the Special Needs Eid Celebration in Northern Virginia, organized by MAS-DC (the Washington, D.C. chapter of the Muslim American Society). They have organized this event, which happens after the conclusion of Eid-ul-Fitr and Eid-ul-Adha, for three years. I cannot begin to tell you how wonderful this celebration is.

It is held at the MAS-DC headquarters and is open to special needs children (young and old) and their parents. This year, they were able to accommodate siblings as well. We made a special 1.5 hour drive to attend the celebration. Rasha Abulohom, whose brother has special needs, helps organize the event every year and has become a friend of mine.

Featuring a petting zoo, a train that the kids can ride on in the parking lot, moon bounces, arts and crafts activities and pony rides, the event understands the sensory needs of the kids. There are no time limits on anything, no age limits. No one looks twice of a child gets super excited, engages in atypical behaviors, has a meltdown or anything.

I remember standing at the bottom of the moon bounce last fall with another mother, whose daughter was perched on the divider between the slides. As the kids exuberantly bounced inside, my son included, her daughter bounded up and down with the bounces, flapping her arms in the air, smile on her face. She sat there for what seemed like forever, lifting her face up to the breeze, feeling the motion of the moon bounce in her body. Her mother just stood there, arms crossed, leaned back against a tree and soaked it in.

She looked over at me. I looked at her. Two women with our special needs kids thoroughly enjoying themselves amongst other Muslims. Both of us at intersection of being Muslim and living with special needs. Our eyes filled with tears. We didn’t say a word to each other. She knew. I knew. It was enough.

The best parts of the event were the photo studio and the mid-day Dhuhur prayers. In the studio, photographers patiently worked with each family to get the best Eid family photo. I have ours sitting on our bookshelf in the family room. It’s the best Eid-day photo we ever took. Later on, Rasha gave a speech about connecting with each other, supporting each other and keeping our faith close in our hearts and in our children’s hearts in whichever way we could.

The children lined up for salat in crooked lines, some wearing headscarves, others not. Some hummed and wandered off during the prayer, others stayed in line and prostrated like a pro. Some needed physical prompting. Lil D managed two sajdahs (when you bow your forehead to the ground) in his own way – lying flat on the ground. As my husband said, they were angels in congregation.

The kids, with help from their parents, made tawafs around a large model replica of the Ka’ba as the Imam gave a short talk on what the Hajj is and made a du’a that someday our children would be able to make tawaf around the real Ka’ba. I don’t know if that will ever happen for Lil D. Allah knows best. But he made tawafs that day as his father pushed him around seven times in his stroller.

And I? I cried. I cry now as I write this. Our families were included, accepted, celebrated – such a rare feeling.

Where Do We Go From Here?

It’s easy to complain about what is lacking and much harder to get up and do something about it. Movements and initiatives begin, change happens when a person feels something is wrong, something is horribly amiss, and they are compelled to do something about it. So, perhaps the change we need to see in our community will only come when parents and families with special needs, adults with special needs rise up and organize to make it happen.

It is a tough, all-consuming life in raising special needs children. My husband always tells me that whatever change or awareness I am sparking through my writing sharing of our story – that I could make more of a difference by creating an initiative or organization specific to helping Muslims (and others) with special needs.

Certainly when I look at the local community where I live and see so many churches that offer monthly respite services, buddy programs for siblings of special needs children or religious services for special needs families, I know we must do something as Muslims. Lil D has taking special needs swimming classes at our local Jewish Community Services. We attend meetings and activities at our Central Virginia Autism Society, which is housed in a church. When I needed evaluations done on Lil D, a local Jewish Family Services organization was recommended to me.

There has been nothing extended to him from our local Muslim community.

The examples are out there, waiting for us to learn from them, partner with them. We, too, can serve all faith communities, starting with our own.

Change comes from within us. Maybe that change I am so desperately craving has to start with me. I’ve always said to myself that it is enough — the mothering I do for my kids, the advocacy, care and planning I do for Lil D. What more can I give? But Rasha is doing something. Salim is doing something. We can all be doing something. We have to.

If awareness is where we are languishing, then let’s own it. Awareness, acceptance and action. It’s time.