The primary goals of the multi-year project was to gather data on families affected by autism in Morocco and to use the data to give informed recommendations to the Moroccan government.
Rabat – “I am just so glad you are listening to my story,” a Moroccan mother told research students as she explained the struggles her family faces with a child with autism.
While collecting data on autism in Morocco, students from the American Worcester Polytechnic Institute (WPI) expected to hear about hardships in accessing special services for children with autism but were surprised how many parents were grateful to be heard.
It was the least expected and most heartbreaking response to the Autism Speaks survey. Families expressed thankfulness for interviewers simply listening to their hardship. Most families did not hesitate to accept an interview and expected nothing in return.
Between the years of 2016 and 2018, Autism Speaks, an international autism advocacy and support organization based in New York, conducted an extensive survey on the plight of families of children with autism in Morocco. The organization worked with the WPI students, who traveled throughout Morocco to interview family members, primarily mothers, of children with autism.
Autism, a neurological disorder that affects people’s motor behavior and communication, is incurable, and symptoms usually begin developing around the age of 2. Autism is a complex spectrum, with each affected child having their own combination of unique characteristics.
The primary goals of the multi-year project was to gather data on families affected by autism in Morocco and to use the data to give informed recommendations to the Moroccan government.
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Every family interviewed by the WPI students expressed hardship when it came to obtaining the best and most convenient care for their children. Some families, most commonly in rural areas, had severe difficulty accessing facilities with specialized education for their children.
Lack of care
Many children had never seen a doctor, been officially diagnosed, or received specialized care. For many families, the difficulty of caring for a child with special needs rests entirely on them.
Even families and professionals who are members or employees of NGOs offering special education, such as Espace al Akhawayne in Rabat, are not fully satisfied with the realities of their care.
The care available for children also varies greatly depending on the facility.
Organizations like Espace al Akhawayne are public and deal with a different set of difficulties servicing the children in their care than those that are private. Lack of sufficient government funding makes them unable to expand their educational space, obtain the items necessary for running classrooms, and forces a low cap on the number of students that they can accept.
Private organizations, such as the Centre Yasmine Breton in Sale, generally care for children of families with higher incomes and receive payment from these families for every service they give. There is generally no cap on the number of students who can join these organizations.
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A significant difference between these types of facilities is the educator to student ratio. In 2018, the Centre Yasmine Breton serviced more than 100 children but only had a staff of around eight. Here, sessions with each student lasted around an hour or so and occurred based on family payment.
In the same year, Espace al Akhawayne had a staff to child ratio of 1:1, and education lasted for multiple hours every day.
Autism care not yet a priority in Morocco
Whether or not an organization relies on government support is the driving force behind the variance in care public and private facilities can offer. The Moroccan government has diminished already insufficient funds for public organizations. Public organizations working with autism-affected families face extreme difficulty maintaining physical necessities for their facilities.
Even more so, harsh social stigma around the social behavior of children with autism makes gaining public acceptance of the disorder seem a far-off dream.
In an effort to better their future prospects, Autism Speaks initiated the project to provide on autism and resources in Morocco.
In the first year of data collection, 2016, students focused more heavily on the collection of wide-ranging numerical data, interviewing over 200 families in both rural and urban areas throughout the nation. In 2018, a second group of students conducted much fewer interviews in only Rabat and its surrounding cities, using the same survey from Autism Speaks as the first group.
The students then shifted to processing their statistics in order to offer recommendations to Autism Speaks.