Muslim Kids and Autism: Help on the Way

Once when five-year-old Gabreel and his family were at a bookstore in the United States, Gabreel pushed a girl. The girl’s angry mother began hitting Gabreel repeatedly and even told Gabreel’s father that his son was wrong to hit her daughter.

Gabreel’s father asked her to look into Gabreel’s eyes and see for herself that he was ‘different.’ After taking the time to really look at Gabreel she started crying over what she had done, for she had realized that Gabreel was autistic.

Reem El-Ghonimi, Gabreel’s mother who resides with the family in Texas, says this incident was a lesson for the family that their son would be held responsible for his behavior because he is not easily identified as a person with a disability.

Autism affects every aspect of the lives of families with an autistic member. El-Ghonimi, whose son was diagnosed with autism at age three, explained to Aboutislam.net how their lives changed dramatically when their son developed signs of autism.

“We implemented very difficult and strenuous diets, biomedical treatments and in-home behavior therapies as a treatment plan for autism,” she said. They also started home-schooling him to give him the one-on-one attention that he needed.

Of the many physical and mental illnesses to diagnose and cope with, Autism is one of the most difficult. Its symptoms are usually discovered at about age two or three, when speech and communication is developing. However, for parents of autistic children, the joys of witnessing their child learn communication and social skills are replaced by worry. (Turkington)

“Why is their child behaving strangely?” “Is my child misbehaving or is there something wrong?” “What will people think if they see my child screaming, rocking himself in a corner, or ignoring me?” “Will they think I’m a bad parent?” These are just a few of the tough questions that lurk in the minds of parents of autistic children on a daily basis.

What is Autism?

Autism is a brain disorder that affects the way the brain transmits and uses information thus hindering the ability to cope with everyday experiences. (Turkington)

Symptoms of autism range from mild to severe. Communication difficulties can range from lack of verbal language at all to one word answers or the repeated use of one word. Social difficulties can range from an infant refusing to look a parent in the eye, stiffening up of their body in response to cuddling, to repetitive rocking and playing with their fingers to violent behavior like screaming, banging their head, and pulling their hair. (Turkington; Michalowski)

According to Mohammed Al-Emadi, Director General and Board Member for the Dubai Autism Centre, 1 in every 146 children is affected. (AME Info)

There are currently no clear causes of autism. Most likely it is genetic but some cases are caused by severe childhood illnesses such as rubella, tuberous sclerosis, fragile X syndrome, encephalitis, or phenylketonuria.

One popular theory is that autism is caused by a reaction to the Measles, Mumps and Rubella (MMR) vaccine. The thought is that some children had abnormal immune responses to the vaccine. (Kahn)

A study in 2008 by the Centers for Disease Control and Prevention (CDC) showed that there is no link between the MMR vaccine and autism. However, this study is not convincing all parents that there is no relationship between the vaccine and autism. The parent-led autism advocacy group, National Autism Association, believes more studies need to be done. (Kahn)

Most researchers currently believe that genetics are a prime trigger for autism. The belief is that when both the mother and the father carry the same defective gene, the likelihood of their child having autism greatly increases.

One theory for the increase in Autism throughout the Middle East is that when both parents have close blood relations, the possibility of both parents carrying the same mutated gene increases, thus producing a higher risk of having an autistic child together. (Michalowski)

However, considering that the United States, where closely related individuals do not marry, has virtually the same rate of autism diagnosis (up to 1 in 166 children,) this theory doesn’t seem to hold up to close scrutiny. (CDC)

Another belief among researchers is the possibility that these genetic changes are spontaneous rather than passed down through generations. Genetics scientists at Children’s Hospital Boston are developing tests based on the findings of this research which will help determine whether parents of one autistic child are more likely to have other children with autism. (Singer)

Awareness on the Rise

While the cause of autism is still being studied, researchers and autism advocates are studying methods for therapy and training to assist autistic children to develop communication and social skills to improve their lives and the lives of their families.

Fears of how people will react to your child’s behavior and cultural beliefs about mental diseases can prevent families from seeking the help they need. Even within the Muslim community, there is a lack of understanding of mental illness. For the El-Ghonimi family, the perception by the public is the hardest to cope with because autistic children look normal but can have odd, erratic behavior.

Nevertheless, awareness is increasing around the world as more and more hospital programs and non-governmental agencies open their doors to help those with autism. Families of children with autism are also creating their own support circles, educating themselves and others, and developing a wisdom regarding autism. (Ataya; Crane)

In the Muslim World, the Dubai Autism Centre, in the United Arab Emirates, which started its programs in 2001, is providing specialists for people with autism and their families and promoting increased understanding of this condition. Programs range from speech-communication therapy to computer therapy where visual learners & thinkers train to communicate by using the computer.

The Egyptian Autistic Society has been supporting and educating parents of autistic children since 1999, guiding them to the appropriate resources for their child’s needs and helping families begin treatment plans as early as possible in the child’s life.

The Government of Qatar is also pro-actively supporting children with disabilities. In addition to the Shafallah Center for Children with Special Needs, the Government of Qatar initiated World Autism Awareness Day in April 2008 which was recognized by the United Nations. (Zukang)

In the Kingdom of Jordan, a national early childhood strategy has been developed to improve children’s health in Jordan. As of 2000, Jordan had 131 centers for people with disabilities with services including therapy, healthcare, skills training, family counseling and education. (UNICEF)

Migrant Muslims in Australia with autistic children can head to the Multicultural Disability Advocacy Association of NSW (New South Wales) which advocates for the rights and interests of individuals with disabilities from non-English speaking backgrounds. (MDAA)

But are these therapies and programs helping? According to El-Ghonimi’s experience, her son has made great improvements with consistent therapy and home treatment. “The little steps, consistency, and repetition are the keys to his progress.”

She describes her son’s progress by the skills he has learned, “He takes care of his laundry and clears the dishwasher. Gabreel can also swim and ride a horse. Most importantly, his relationship with us, his family, has evolved through constant work into fuller interactions between us.”

Though autism is still not curable, treatment and therapy can improve the lives of those with autism and the lives of their families and care-givers. By becoming more aware of autism, its symptoms, and the therapy programs available worldwide, we can globally make a positive difference in the lives of these families through our understanding and support.

This article is from Science’s archive and we’ve originally published it on an earlier date.

References:

Ataya, Ola. “Mental Health Program Progress Report III.” Arab Resource Collective. 2006/2007. Accessed 2 Nov. 2008.

Autism Spectrum Disorders. National Institute of Mental Health. Accessed 2 Nov. 2008.

Children in Jordan: Situation and Analysis 2006/2007. UNICEF. Accessed 2 Nov. 2008.

Crane, Kristine. Autism and culture. News Observer. 5 Aug. 2008. Accessed 2 Nov. 2008.

Dubai Autism Centre declares April as Autism Awareness Month. AME Info. 24 March 2007. Accessed 2 Nov. 2008.

Kahn, Micheal. MMR vaccine not seen causing autism. Reuters. 4 Feb.2008. Accessed 2 Nov. 2008.

Michalowski, Jennifer. Middle Eastern Families Help Scientists Pinpoint Autism Genes. Medical News Today. 12 July 2008. Accessed 2 Nov. 2008.

Singer, Emily. DNA Deletion Linked to Autism. Technology Review. 10 Jan. 2008. Accessed 2 Nov. 2008.

Tele-Briefing on CDCs Surveillance Report on Autism and Autism Specturm Disorders in 14 Communities in the United States. Center for Disease Control (CDC). 8 Feb. 2007. Accessed 2 Nov. 2008.

Turkington, Carol A. “Autism.” Healthline. 2002. Accessed 2 Nov. 2008.

What is MDAA. Multicultural Disability Advocacy Association of NSW (MDAA). Accessed 2 Nov. 2008.

Zukang, Sha. Statement to the Panel Discussion on Global Awareness of Autism: Challenges, Responsibilities and Actions. United Nations. 2 April 2008. Accessed 2 Nov. 2008.