Autism Awareness: Interview with Umm & Abu Sabah

As a special feature for Autism Awareness Month (April) and as a part of Muslimas Oasis’ Blue Hijab Day (which is today, April 2nd) initiative I’ve done an interview with Umm and Abu Sabah, authors of Umm Sabah’s Selections and My Islamic Family, respectively. They are the parents 5 year old Dhuha, an Autistic girl.

Tell us a bit about yourself and your family.

My name is Abdullah Hashim. I’m 30 years old and I’ve been Muslim just over 11 years. My wife, Zahira, and I got married in 2003 and we have three children. Sabah is our eldest at six years old. Dhuha is five, and Abdurrahman is nearly two years old. We are a close family and spend most of our time together.

Your experience as the parents of a child with Autism is the purpose of our interview today, tell us where on the spectrum is your child diagnosed? (Aspergers, PDD-NOS, Classic Autism etc.)

Dhuha has classic Autism, though I don’t feel the term autism accurately conveys Dhuha’s day to day struggles.

Tell us the first things you noticed about your child that caused concern or set off alarm bells and at what age?

Looking back we can see signs of Dhuha’s autism as early has 9 months old. Of course, we didn’t know anything at all about autism and so we wrote most things off to a bit of quirkiness.  Some of the early signs were, hand flapping, making repetitive sounds but no attempts to communicate, running around a room and undue fascination with things that move in a circular motion. She didn’t point or ask for things. When offered things such as sweets, ice cream or any other treat, she wouldn’t seem to be bothered.

Once you had noticed these things, what were your first steps towards either working with them on your own or figuring out what was causing the issues?

When you decided to get an official diagnosis, tell us about the experience you had finding the right Dr’s and getting the right answers.

Where do you live and how do you think living where you do affected that experience, if at all?

We live in England. It’s hard to say if it had an impact. Certainly, having access to the NHS and receiving DLA has removed most if not all the financial worry of caring for Dhuha’s disability. I couldn’t imagine begin stuck in a place like America and having to pay for everything. I don’t think we could have coped.

What about family, what was your immediate and extended family reaction to your child’s issues and subsequent diagnosis of Autism?

Since Dhuha is not the first in our extended family to have autism, most reaction was of one of acceptance. However, most of our family does not accommodate her well or at all. The expectation is that Zahira and I control her. The result is a feeling of exclusion and isolation.

Do you have other children? How has your child’s Autism impacted their life(lives), in both positive or negative ways?

I think the biggest impact has happened to Sabah. Where you would normally see two sisters at their ages playing and enjoying their time together, we have to keep our girls apart. Sabah also has to deal with the inequalities between our treatment of her and Dhuha. It is simply impossible to parent a normal developing child and a child on the autism spectrum in the same way, because their abilities and our expectations are very different. On the positive side, Sabah loves to look after Dhuha and she is very proud of her.

What challenges do you face with having an Autistic child and a Non Autistic child? How does your parenting have to change between them or how is your parenting different from other parents who have, say 2 non Autistic children?

A big challenge we face, is not allowing Dhuha’s condition to dictate or control what goes on at home. In the beginning, morning to night was spent dealing with Dhuha’s issue. It was very easy to extend our mindset of dealing with Dhuha to the others, restricting their movement and even becoming short tempered with them. Another challenge we face, is making sure each of our children get enough positive attention. Sabah especially spends too much time on solitary activities.

What impact, negative and positive, has your child’s Autism had on you as a parent and as a person outside of your parenting role?

I am a better parent and a better person because of Dhuha. She taught me what patience is and made me realise how most of the time I fall short of true patience. She has helped me to put my trust, hopes and dreams in Allah’s hands. Moreover, there is something wonderful and heart melting about her eyes and her smile.

There are many challenges we face with children who have Autism, but they also carry many gifts and can offer special insights with their unique perspective. Tell us a bit about your child’s special abilities, special gifts and special interests. (Note: In our last interview sister Zeba pointed out not all children on the spectrum have special abilities, my intention with this question is to ask, what is special about your child, it’s going to vary greatly, but every child has something special about them)

Dhuha is an affectionate and clever girl and a bit mischievous. She has an amazing ability to think through a problem and arrive at her own solution. She loves her family, teachers and friends and she forms close bonds with them.

Share some advice for parents who suspect their child may be on the Autism Spectrum.

And some advice for parents whose children have been diagnosed.