Lessons of autism

“Ca.” That was the first time I got cold shivers all over my body. After three months of saying “cat,” Nadeem couldn't say the whole word anymore. He was 2 years and 7 months old. September 2009. I was seven months pregnant with my second boy, Ramy. Then came Halloween. Nadeem had a mouse costume, which he refused to wear. After much cajoling, he finally agreed. When I went to pick him up from the nursery that day, he looked like he had cried for hours. I was asked to the director’s office where the four people who ran the nursery were sitting. They were trying to tell me they couldn’t have Nadeem at the nursery anymore without a shadow teacher. But because they were trying to be diplomatic, they wouldn’t be clear and I was hopelessly frustrated. I walked back to the car with Nadeem 25 minutes later to be faced with an angry British Zamalek resident who complained about how retarded people in Egypt are because I had parked my car in his building’s garage. I couldn’t even explain why I was late. It was that moment, exactly that moment when the red-faced Brit was screaming over my head while I tried to buckle Nadeem into his car seat that I knew my life was not going to be the same anymore. It was the most terrifying moment of my life.

The actual realization came when Nadeem was diagnosed with autism, three weeks after the nursery episode, just before I gave birth to Ramy on 27 December 2009. In those three weeks, I mobilized everyone I knew who I thought could help. I went to Nadeem’s pediatrician, an old man with whom I had connected from the moment he met Nadeem as a 1-week-old baby. From my description and his questions, he said he suspected Asperger’s but that specialists had to do an assessment. He asked to join me when we went for the assessment. I needed the support.

The process of finding out was tough.

There was a tense quietness about that trip. My husband, Ali, driving, me next to him and Nadeem in his car seat. We were on our way to meet Dahlia Soliman, an education psychologist who founded the Egyptian Autistic Society in 1999. As each question rolled out of Dahlia’s mouth, Ali responded with detail. Does he point his feet often? How often does he hug you during the day? Does he respond to requests? One-part request or more? Images were rolling in my mind. I heard myself talk to Nadeem as we put the blocks back in the box, just finishing a singing game. “Nadeem, shall we go take a bath now, then read books?” His eyes light up and he jumps up to go to the bathroom. I look at my notebook. I have a list of the words Nadeem knows and to what sounds they digressed to.

“The questions I just asked you are for an early assessment test. Nadeem is on the spectrum,” Dahlia said.

I cried on the way back. Then I became furious about how little I actually knew about autism, and with more scrutiny, I found I felt guilt that I didn’t notice the symptoms earlier. I also clearly identified denial, during the stage in which I was questioning his speech delay and getting reassurances from people who have had experience with children and know Nadeem. But I also understood that what I had already been doing with Nadeem since he was born was a big factor for why he, despite being on the spectrum, was much more communicative using modes other than speech. It was this that helped me. This is how, for example, I detected very early on, when he was 8 or 9 months old, that he loves routine, loves to know how his day will be, and loves the things we do at different stages of the day — finger painting or watercolors or crayons in the mornings, swinging and sliding and playing with sand at the club in the afternoons, and singing and dancing all the time.

In the period between his speech digressing and when we found help, Nadeem was suffering recurrent tantrums. I had analyzed this as frustration that he couldn’t speak. I was right. I just didn’t know what to do to help.

I learned.

Nadeem started following Dahlia’s program, which she designed based on his strengths and weaknesses, along with trainers in social skills, self-care, occupational therapy and academic work according to the EAS methodology, which entails customized programs for each child. This offered so many answers to the challenges Nadeem faced. He made impressive progress: No more tantrums, he loves his routine, he’s happy and engaged. Since he began the program, he’s become very close to his dad and me. With others (adults or peers), he only gives them attention if they try hard enough.

Since November 2009, we have met Dahlia every week. She is a strong, smart and passionate woman who will shamelessly tell you that her only concern and bias is children and adults with autism. Together with her team of 35 trainers at the autistic society, she has built a unique organization in the field of special needs in Egypt. More broadly, Dahlia has constructively and aggressively addressed autism in Egypt in issues of government policies and services, has contributed to the training of a large number of special needs university students, and never turns away any case of autism that seeks her help. Amplifying her work becomes particularly relevant today.

April is Autism Month. Who noticed the blue pyramids lighting up last Monday to recognize International Autism Day? More importantly, who will realize that was part of a worldwide campaign to raise awareness about autism? Will lighting the pyramids blue impact people to think “hmm, autism exists in Egypt and a lot of work needs to be done”? Sadly, it is these consumerist solutions that bring the attention of the media. We get a series of articles talking about the blue pyramids, celebrities advocating the cause of autism, etc. But does any article really describe what autism is? Does it highlight problems faced by parents and children including legal, educational and social ones? As a parent of an autistic child and a media professional who quit mainstream media in 2005, I am wary about superficial and temporal media outbursts. More needs to be done.

What I would like to see is journalists doing their job, probing the issue, unfolding the layers of the story and publishing insightful narratives of autism in Egypt. A multifaceted issue, autism is about the lives of parents, children, restrictive laws, costly therapy, lack of government care and lack of access to information — especially in Arabic. This list is only a few of many issues. For one, class becomes a relevant issue for the fate of autistic children as information and therapy can both be inaccessible due to cost and language barriers. On average, autism-related therapy costs LE5,500 a month. The condition in Egypt is dismal. I have yet to see a journalist adopting the issue and confronting those responsible with the findings. I have yet to see anyone get to the bottom of the matter.

I have yet to see in any of the platforms of political parties and presidential candidates any indication on how they plan to facilitate the lives of sectors in the society that have special needs, be it permanent or temporary, including children, pregnant women and elderly people for whom the mere act of walking in the street is a battle on its own.

I am angry.

I am angry even though I can count my blessings for making, alongside my husband, a decent income and for being able to consume informational material in English amid the dearth of content on autism in Arabic. I am angry even though I am privileged to be connected with a network of educationalists and experts through my work at the Arab Digital Expression Foundation, which looks at ways of developing expression through alternative educational platforms.

But the issue transcends my own condition.

The very experience of the EAS is emblematic of the economic challenges of autism treatment in Egypt. Last November, the society’s trainers decided to strike, demanding higher wages, an issue they have been rallying around for two years. EAS is running on meager resources and works with children of different economic backgrounds who can’t afford the full cost of the program. As parents for whom EAS is a critical entity in the lives of our children, we felt engaged. After meeting with Dahlia, we formed committees and started working on the institutional development of EAS. Trainers experienced a newfound ownership. Today, our meetings are vibrant, excited, loud and emotional. I pondered over the whole experience and found that when revolution reaches home, the sky is the limit.

Over this past year, we have been living such processes and conversations, collectively and individually. We have a wider space to maneuver, to challenge, to engage. We have core networks in most major cities that are growing, learning and doing at an inspiring level. It may not be that widely apparent yet but it is happening — and that’s what we will nurture.

I put this in the context of revolution since it is one of a plethora of popular responses to government failures to intervene in our lives to make them better.

Improving the lives of autistic children and adults in Egypt could happen with needed government policy change. There are many details that can be solved immediately, such as changing the format of IQ tests so they are autism-friendly or getting immediate exemption from military service. Other issues require total reconstruction, such as mainstreaming autistic children in schools, developing school curricula with visual tools that are crucial for autistic students, and most important of all, training government employees exposed to children aged 2 to 5 to do an initial assessment test to make sure cases of autism are detected early — a crucial factor for people with autism.

On 2 October of last year, Nadeem had his first day at a mainstream school with a shadow teacher. He woke that day, all enthusiastic, saying “I am going to school” with his charming smile we all fall for. Today, Nadeem hugs us, smiles and plays with us. He can read and do grade one mathematics. His perception and response to rhythm and beat is high. Recently, he started performing to music, stomping to the beat, and is aware of and likes an audience. His simple requests are becoming more spontaneous. He also loves painting and produces beautiful work. He is imitating us a lot more and even acts out scenes from his favorite films. He lifts the phone, holds imaginary conversations, says “OK bye” and hangs up. I realize how we’ve come a long way, experiencing intense emotions at different times. But today, we’re stronger and better. Nadeem is not only improving, but connecting our little personal lives to the bigger world around us. This is key at the revolutionary moment we’re living in.

Ranwa Yehia is an activist and co-founder of the Arab Digital Expression Foundation. You can get in touch with the Egyptian Autistic Society on Twitter at @egyptautism.

Read more about autism here and here.

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