Tell us a little about yourself

I am a mother of a nine-year-old neuro-typical daughter, and an eight-year-old autistic boy. I am a Muslim woman who wants to put the word out that we must treat our ASD kids well, and never to be ashamed of their condition. My dream is to bring this idea to faraway places, so there will be no child left behind, mistreated or even harmed.

What inspired you to start a blog?

I always took my ASD son everywhere I went, and made sure that he got the same treatment as his neuro-typical sister Safiyya. I never hid his condition from anyone. It really surprised me when I started to hear that many Muslim families try not to take their autistic kids anywhere, because of cultural reasons, or fear of condemnation from others (I heard and saw some very disturbing situations). I am a convert, so I really do not know about cultural issues in this regard, but what I learned about Islam is that this religion teaches us to be kind and tolerant to all God's creatures. In my understanding, ASD kids certainly fall into this category. This is the reason I started the blog, for Muslims with autistic kids. I do not have religious segments in there, rather I wrote about autism, different treatments and my personal experience. This way I may be able to reach out to others and make them see that life can still go on regardless of the diagnosis of autism. I wanted to show that we must treat these kids well; it is our duty to provide them with goodness and fairness. If they are not accountable for what they do, who are we (the people) to judge these kids? I really encourage you to read Imam Hassan's article about this.

How has the blog developed over time?

I think it is still developing. It is a bit slow, but as I said before I learned to be patient and look at quality not quantity. My idea is, if I change one person's view only, at least I did that, because one person can become one million over time or even more. I am optimistic, and I hope that we will see the much-needed change very soon. Honestly, I have already seen changes. My recent move has hindered my attention to my blog, but once I settle in my new home in a different country I am hoping to bring my experiences into this blog, and I will be able to share it with the community.

What resources have helped you the most in your journey?

I learned about resources along the way. I guess I did this the hard way because I did not know better. As I became more accustomed to autism (if you ever can be), slowly I started to reach out to others to gain more knowledge. This is another reason I started this blog, because searching alone will be difficult and it will make things harder for the parent/carer, and it can slow down the treatment for the child as well. Sharing resources is certainly a pleasure, because I really feel that the more knowledge one has, the better outcome is possible. The Internet really helped me with the scientific aspect. I received the religious aspect from a dear friend from Ohio, Sr. Laila Nasheeba, who is my teacher and my friend. She helped me to see beyond autism from an Islamic perspective.

Your daughter wrote the book, The Lost Words. How do you encourage and inspire your other family members to be actively supportive whilst enjoying their childhood also?

My theory is our life, our happiness and our difficulties have to be open and understood by all members of the family. I am not talking about small stuff; I am talking about things that impact our lives. I never hid autism from my daughter. I started telling her when we received the diagnosis. I spoke about it on her level, and as she grew her knowledge bout autism grew with her. I believe in order to gain support and a normal life (yes you can have a normal life, even with an autistic child) one must be honest with the rest of the family members. Safiyya has understanding because of her knowledge about autism. She did have difficulties but I was very surprised how she handled them. One day, one of her friends told her that she had to choose between her and her autistic brother. Her answer was: "It is your loss, not mine. I love my brother, and no one will come between me and my brother". Till this day, she has never looked back to that event. She is honest about her brother’s condition to anyone. She doesn't sugar-coat things, she just tells the facts. The friends she has, they respect her, and like her brother. We attend events all the time, and we always have a plan if we encounter any difficulties. It may seem sometimes that she has to compromise, but in reality we all have to at one time or another. At night when her brother is asleep we snuggle up and talk about things. That is our time, Mommy and daughter time.

She is included in all Amin's therapy and education plan. I tell her how we teach certain things, and I also ask her opinion about things that are hard to teach Amin. She is really good at giving advice. So my advice to all parents out there is: do not hide your child’s condition from siblings. You will gain an ally if you include them.

What message are you hoping to give to children and families reading The Lost Words?

We hope that families realize that there is a positive in every negative. It might be hard to see the wood for the trees, but if you look hard enough for goodness it will be there. You see, these kids have so many benefits. I learned from my son a lot. I became a much better person. I became stronger in my faith which will carry me to the end. I learned that nothing really matters in life unless you obey by the law God has given to us. When one understands that the first step of healing is accepting the decree of Allah, the next step is to use the resources that God has given to us, and believe in a positive outcome. I hope that families will realize what treasure they have in their hands. You see if you make dua and your child heals, that is wonderful. But if your child doesn't heal, this child will be a person of Jennah and that is every parent’s wish for their kids. So either way, the parent of an autistic child is a winner. What is to cry about in this?

Muslim communities find it harder to deal with a special needs child; do you think this is true and, if so, why?

I think the problem is more cultural than anything else. I strongly believe that masjids should take the initiative to educate their people about autism in many different ways. I believe that the imam and scholars should take the religious part of the initiative in this matter, and try to provide other professionals to teach the families otherwise. I believe if they have workshops or social services readily available, it would help a great deal.

A language barrier is another issue that these families face. Us Muslims, who are speaking more than one language, should be there to provide assistance to these families as well. In our daycare facilities we should provide a checklist of the early signs of autism. Muslim paediatricians should donate some of their time to speak about early childhood developments, what to expect or look for. It takes a village to raise a child, and it takes an Ummah to care for autistic kids. It is time for us to unite finally and be there for our little brothers and sisters in need.

What advice do you wish to give other Muslim families who have just received a diagnosis of ASD?

DO NOT EVER GIVE UP HOPE.God has a plan, and it might not be the same you planned for yourself, but have faith that His plan is better for you. I advise you to surround yourself with loved ones who can help, because this journey is very difficult to tackle alone. Find the nearest treatment facility, weigh up your options, ask questions, take notes, and allow yourself time to think. Do not feel guilty for crying, it is just showing that you are human. Do not take ignorant people's insults to heart. I developed this theory..."ignore the ignorant", it is better for you and your family. Seek out the company of other families with ASD kids. They can be a very valuable resource. Listen to advice, but do not feel that you have to follow. You are the one who knows your kid the best, and you can determine if certain things will be of benefit or not, or may be harming your child.

Lastly, please know that God has trusted you with a very valuable human being, a person of Jannah. You are spending 24/7 with this blessing, do not throw it away. You are your child's advocate, no one will stand up for your kid the way you can. DO NOT LET YOUR CHILD DOWN!!!! If you do not stand up for him/her, no one ever will.

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"Our lives begin to end the day we become silent about things that matter." MLK

'The Lost Words is full of acceptance, advice and understanding - exactly what the autism community needs in a storybook. Daniela Frongia’s illustrations are charming and eight year old Safiyya Bintali

writes with the gentle innocence of a child, the love and compassion of a sibling and with the wisdom and elegance of an author well beyond her years.’

Emma Apple, founder of Muslimas’ Oasis and Blue Hijab Day, www.muslimasoasis.com

This book is extremely special, written by a sibling of we learn through her eyes what fears and challenges her younger brother faces. Greenbird Books places huge importance on the varying abilities of its readers and will always place a huge emphasis on raising awareness for such causes. Autism may be a word you have heard, you may know someone with it, and you may have no idea what it is. This book is the simplest introduction to that word, helping Muslim families raise awareness.

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