The day after speaking at the 50th annual Islamic Society of North American conference in Washington, D.C., I was back at home in my basement hanging with Lil D. He was roaming about, spinning his beads and calling “Maw-maw! Maw-maw! Maw-maw” – very much caught up in his stim and oblivious to the world. Every so often he stopped and would come close to me, put his face in mine and say nonsensical words like “Oweeowee owee. Maw-maw! Maw-maw!”
As if to say – ok Mamma, you had an audience, you said some of what you wanted to say about how we must find ways to special needs families in our Muslim community. Now what?
Now what, indeed.
Because as much as I was honored to provide a parental perspective on autism, the issues and difficulties individuals with autism and autism/special needs families are facing in our Muslim community, and some ways we can make things better; as much as it was progress to have that platform at ISNA alongside past ISNA president Dr. Ingrid Mattson (who spoke from a theological standpoint), disability advocate Mohammed Yousuf and Maher Eshgi, who spoke in sign language about the hearing impaired – the question now is where do we go from here?
“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)”
In my mind, we continue to work on educating and sharing our stories – we work our way into the hearts of our fellow Muslims by sharing our struggles and joys and what these “special needs” actually are. This is what I have done, and this is what I’ll continue to do. But we don’t stay in the “awareness” end of the pool, treading water. We start to move to the deep end, where action awaits.
There’s a lot I didn’t get to say at ISNA, but that’s the beauty of having a blog and being the Managing Editor of the Muslim Channel at Patheos – I can continue my thoughts and keep the discussion going here. So the following is a rehash of some of what I said at ISNA (along with my fellow panelists) along with some of what I didn’t get to say.
Why Should You Care?
So many of the topics at ISNA seemed to focus on ways we can change and become better as a community. After the first day, when I was talking with Marwa Aly (editor at Patheos’ Grow Mama Grow blog and producer of the upcoming UnMosqued documentary) and Rabia Chaudry (columnist at Altmuslim) we agreed this convention felt like it was solidifying a tipping point for our American Muslim community – where these discussions of creating better spaces for women, being more inclusive and transparent in our masjids (and communities) and instituting other changes are really becoming a part of the main conversation, as opposed to hanging out on the fringes.
With so many ideas and plans a-brewing, so many directions in which the American Muslim community is being pulled, how do we bring urgency to the struggles of autism and special needs Muslim families? Why should our community care? Why should leaders in our Muslim community sit up and listen? Well, consider this statistic: Last year the Centers for Disease Control put the statistic at 1 in 88 – as in 1 in 88 children have autism spectrum disorder.
Recently that number was bumped up to 1-50. Please pause and digest that.
So maybe in your family you don’t know anyone with autism. But I guarantee you that within two degrees of separation, you will know someone. There are many Muslims dealing with autism and all sorts of special needs. This I promise you.
For all the challenges, triumphs, frustrations, anger, joy, heartache, despair, goodness, love and light that comes from this journey – what we must agree on is this: Individuals with autism and special needs have worth. They are part of our community, our families, our lives and they deserve their chance in life – their chance at deen and dunya in the best way possible.
My son, and the children of so many others I know, deserves to be supported, helped, accommodated and above all, included by our community — at events, in our Islamic schools, in our masjids. Caregivers need to be supported emotionally, spiritually, physically with respite, support groups and other means of support.
And if we start to put some very simple, very do-able practices in place for our autistic and special needs children and families, the outcome can only be more beautiful and beneficial beyond our wildest dreams.
What Needs to Change?
From a post I wrote in 2011 about A Special Eid for Special Needs children:
“Anyone who tries to connect that divide between raising an autistic child and adhering to faith traditions knows what a difficult task that is. And I’m not talking about crisis of faith, about those “What is God’s plan? or “Why my child?” or “Will my prayers ever be answered?” type of problems. I’m talking about including special needs children in faith practices and in houses of worship.
Whether the child is high-functioning, moderate, or severely autistic, whether he can talk or not, if he has behavioral issues or problems in social settings, whatever the nature of his autism is, finding a way to incorporate him into religious ceremonies or specific practices of faith can be an exercise in frustration and futility, especially if one’s house of worship does not have a plan of inclusion for special needs children – and most don’t.”
This needs to change.
And this also needs to change: Attitudes – of those at the masjids in their acceptance of special needs families and individuals as well as attitudes of our imams, sheikhs, muftis and other religious leaders. I recall listening to a lecture once by Imam Khalid Latif about counseling people who come to him with tough issues and problems – how to answer those “Why me? Why us? Why did this happen? What is God’s plan?” type of questions. He related the story of a young women who came to him telling of abuse she had endured.
And he didn’t know what to say. He had to be careful of what he said.
This is so true. There are times when I am approaching rock bottom in my faith practices, and when I seek help, the last thing I want to hear is “God only put as much burden upon you as you can handle.” Or, “God has a reason, a plan for everything.” Or, “special kids for special people.” Or, “Trust in Allah.” Or even that Quranic phrase that normally provides me with such comfort: “Verily with hardship there is ease. Verily with hardship there is ease.”
There are days those work – those ayats and phrases are exactly what we need. Then there are days those words will just push me over the edge. Our imams and religious leaders and scholars, those who lead our masjids and communities, are taking steps to better counsel and help their community members. Please learn more and make these efforts for special needs families and individuals, too. And please don’t tell us autism or whatever disability (intellectual or otherwise) we (or our loved one) are dealing with is because of some evil or a jinn or something. Advising us of prayers to read or Quranic verses to recite is good and needed, but please don’t infer that a disability is somehow coming from something bad.
Maybe you don’t agree – I don’t expect to represent every autism or special needs family. Please feel free to comment below.
In addition to attitudinal change, we need spiritual and secular support for caregivers as well as individuals with autism and encouragement to autism families as well to dig deeper into their already depleting stock of energy and be more public in our communities.
Where are Muslim Autism and Special Needs Families Feeling Ostracized?
- In the masjid – we need to educate our masjid leaders about special needs and what accommodations we may need. How are they going to know if we don’t speak up? (This makes me think of the “Quietism” Marwa Aly writes of in her post on Sacred Spaces.) At the discussion at ISNA, Dr. Mattson spoke of how our imams are hired to lead the masjid in prayer and aren’t trained to be social workers. This is true. So, maybe our imams should be required to have some expertise in community building and social work. And if they are not, the very least we can do as a community is make sure our imams and masjids are educated in all the services available in their local communities, so they can recommend where we can go for help.
- At community events – lectures and halaqas, bazaars and social gatherings.
- In Islamic Schools and Sunday Schools – our children are more often than not not welcome. Administrators don’t have understanding of what an individual education plan (IEP) is or how to work with our children, whether on the Aspergers side of Autism or severely affected. They cannot offer one-to-one aides to help.
- In the khutbas and lectures being given at our local masjids/mosques and by popular, “big name” imams, scholars, sheikhs and muftis in their institutes and on their YouTube channels – not focusing on the unique challenges of special needs and autism families. Have you heard of one? I haven’t. (Except when Mufti Ismail Menk put up two status updates about special needs families and individuals in Ramadan. Yeah, I about swooned.)
- In how children and individuals with special needs are treated in the Muslim community. A friend of mine, Joohi Tahir, spoke on this topic numerous times, saying, “It is so important that you see the child, not just a disability. These children are “no less Muslim and no less deserving.” Each child has certain abilities and strengths which can be developed, no matter what.”
What’s Stopping Us?
I would wager that the lack of knowledge and resources are the biggest issues. To accommodate autism and special needs students in Islamic schools, laws have to be complied with, funding is needed and more teachers’ aides must be hired and trained – it isn’t easy, I know.
But nothing is. Building Islamic schools decades ago was a labor of love, but we made it a priority. We shouldn’t deny children with autism and special needs the chance to attend Islamic schools because it is difficult to set it up. Also, what about all cities across the United States where masjids are being built across ethnic lines? Where I live, four masjids are in the process of being developed – this in an area where one great one would be enough. Then our fundraising dollars wouldn’t be divided.
As for knowing what we can do to help, we don’t need to rewrite the book on this. We can look to other faith institutions in our community to see what is being down and how.
- Churches who offer monthly respite services
- Churches who offer support groups
- Jewish Centers and other religious centers that offer accommodation for special needs students in their preschools, offer special needs swimming classes or music classes
- Houses of worship that offer babysitting services with volunteers trained in the care of special needs children.
- Churches offer special Sunday Services. Why can’t we offer special services or Jummah times where it’s easier for autism families to join in or rotate childcare so families can come to Jummah or the masjid for events?
We Need to Be the Change We Want to See
This one is hard for me and I suspect for so many other autism and special needs families. As difficult as it is for us, we have to be the ones to push these issues. We have to be a presence in our community.
From a blog post I wrote:
“I know the fault doesn’t entirely lie with the mosque, the imam, or the Muslim community. It’s imperative on me to be an advocate for my son, to introduce him to the congregation, to fight for his place there, to talk to the imam and explain our needs. But when you fight battles of inclusion at every turn, when you expect your mosque, your religious community to be your sanctity, you don’t want to have to make the effort there. You want the effort to be made for you – by your community, by Allah.”
This is an area where I falter every time, but nothing will happen until Muslim autism and special needs families become more and more vocal. We need to talk to our imams and ask them to educate the community. We need to spark the change, and it’s so hard to say this when I know personally that it is just impossible sometimes to put ourselves and Lil D out there.
I’ve got three children to look after, to raise to be strong Muslims, good humans, good Americans. I need the help of our local Sunday school, masjid, community centers and community to do this. This is not just about Lil D. This is about Amal. This is about Hamza, This is about my husband. This is about me. This is about you. This is about all of us.