“I’m standing in a place people call the playground. My eyes are hurting from the brightness of the sun…I keep my head down and twitch my eyes. The sounds around me are hard to distinguish from one another, I hear people’s voices; I hear children crying; I can hear and feel the vibration of the wind every time the swing next to me goes up and down…I cover my ears with my hands. I start humming. Everything around me is moving so quickly. I start getting anxious. Why is everyone in such a rush I wonder? Slow down!
While all this is happening, my mother starts talking to me and asks: “do you want to go on the swing? “I barely look up, I don’t uncover my ears, I don’t reply. She asks me again; I don’t reply; I start humming louder. This time my mother looks at me and says slowly “I want…?” waiting for me to complete the sentence. Wait mom, wait…I’m processing the voices, the feel of the wind, the cries, the brightness in my eyes and your question. While my mother waits patiently for me to answer, a voice in the background says: “Why is your son covering his ears? Why doesn’t he look at you or respond to you?” He is really misbehaving. My mother looks back and says “my child is not misbehaving; my child has Autism”.”
We have all heard about Autism Spectrum Disorder (ASD) at some point in our lives, we’ve come across it on the news, on TV, in articles, or met a friend of a friend with an Autistic child or sibling, but not many truly know what it is like to be Autistic or have a child on the spectrum.
In the story above, this mother once again finds herself having to explain what this all means; what Autism is, and she sometimes may even feel the need to apologize for her child’s behavior.
So, what is Autism? It is a neurodevelopment disorder that appears during the first 3 years of life, which affects brain function and three main areas of a child’s development: the social skills; communication skills and behavior. Autism is defined as a spectrum disorder because it has a wide range of symptoms, and varies in severity, from mild to moderate to severe. For example, some people may have mild behavioral challenges, but be affected in their communication and social skills, while others might have behavioral problems and poor social skills but good speech.
In most cases parents start noticing a change in their child between the ages of 18-48 months. Around that age the child starts stagnating in his/her development: there is a noticeable delay in speech, poor interaction with other children, poor eye contact, no separation anxiety when the parents leave the room and “odd” behaviors known as stereotypical behaviors start catching the parents’ attention. Once a parent notices these early symptoms or has any slight doubt it is important to immediately ask for a proper diagnosis, not only from a pediatrician but also from a specialized therapist. Early intervention has proven to be effective for a good prognosis. Unfortunately, we still do not have a specific cause for ASD which makes it extremely difficult for people, including the parents themselves, to understand the condition fully or even accept it in some societies and cultures.
This is the case in Egypt where awareness of the condition is still poor, and even when people know about ASD, there is a big gap between knowledge and acceptance of the disorder. Egypt currently does not have official statistics on ASD, and although awareness is starting to improve, it is still mostly limited to families that are highly educated and/or from higher socioeconomic backgrounds. Many families from lower socioeconomic backgrounds don’t understand the disorder or sometimes don’t even know it exists. In fact, in some cases it is a big taboo to have a child with learning difficulties and challenges.
Parents with children on the spectrum face many barriers in Egypt. Socially we are far behind when it comes to acceptance and integration in schools and society. Schools don’t have enough trained staff, curriculums are not adapted to the child’s needs, and learning support staff are not always provided. Parents also struggle to find qualified therapists and even when they do, the therapists are overwhelmed with the number of clients and are not able to offer their services to enough children. In addition to this, there are very few centers where a child can receive a full therapy program. More often than not, parents have to move from one place to another in order to access speech therapy, occupational therapy (OT) and behavioral therapy services.
Children with ASD will often need a great amount of behavioral therapy, OT, speech therapy and so on, but all of it must go hand in hand with a fundamental element: integration into society. Therefore, it is important to raise awareness in new generations to allow ASD children and adults to be part of the society, to be educated, to work, and contribute to society with their capacities and talents. This would be a win-win situation for individuals with Autism and their families, as well as the Egyptian society as a whole. After all sustainable development can only truly happen, when “no one is left behind”.
Our world is moving too quickly, we are all running around, juggling a thousand things at once and sometimes forgetting to do what a mother of an ASD child knows how to do best: Stop, listen and wait patiently for her child to process her question.
“I want swing” I finally replied. She took my hand and guided me towards it. I am not misbehaving…I have Autism.