$/RRNLQWRWKH&XUUHQW 6WDWHRI$XWLVPLQ 0RURFFR 6XEPLWWHGE\ +DP]D+DFKLP 6SHQVHU0DUWLQ 0DFNHQ]LH0LQHU 0RKDPPHG0DVUXU5DKPDQ 3URMHFW$GYLVRUV'U*EHWRQPDVVH6RPDVVH'U,QJULG6KRFNH\ 3URMHFW6SRQVRU'U0DUHWKDGH-RQJH 7R%HQHILW$XWLVP6SHDNV 'DWH i Abstract Autism affects an estimated half a million people, but only 20% are diagnosed and even fewer receive treatment or services. This project surveyed caregivers of autistic children to gauge the level of awareness of autism spectrum disorder, as well as the scope of services and treatments offered in Morocco. We interviewed families and professionals and gathered information from autism centers. With this information, we compiled a database and report for Autism Speaks that can identify areas of improvement for care. AUTISM SPEAKS: CASABLANCA AND TIZNIT | ([HFXWLYH6XPPDU\ $/RRNLQWRWKH&XUUHQW LKszi 8 6WDWHRI$XWLVPLQ0RURFFR Autism in Morocco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ummary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¶VZRUN LQ$UDELF SURSRVH WKH UHTXLUHG WUHDWPHQW DQG KHDOWKFDUH SODQV WKDW WKH DXWLVWLF SRSXODWLRQ RI 0RURFFR VRUHO\QHHG $QRWKHUQHZVDUWLFOHLQFOXGLQJSLFWXUHZLWKWKHJRYHUQRURI7L]QLW An Interactive Qualifying Project submitted to the faculty of Worcester Polytechnic Institute in partial fulfillment of the requirements for the Degree of Bachelor Science. AUTISM SPEAKS: CASABLANCA AND TIZNIT | iii teams, with each person being of a different reach worldwide, especially to regions and discipline. This team should include a countries still lacking in autism care and pediatrician, a psychologist, a speech and treatment (Autism Speaks History, n.d.). language pathologist, and an occupational therapist. Sometimes genetics testing and Methodology screening for autism related medical issues is Our goal was to provide Autism Speaks with a recommended. Extensive testing is required so report of statistical and ethnographic data on the that parents can understand their child’s unique needs and resources of families with autistic form of autism and his or her specific strengths children in Morocco. We accomplished this goal and needs, and so that they can receive the proper by meeting the following objectives and care (“How is Autism Diagnosed,” n.d.). deliverables: The team with two translators we worked with in the Tiznit region 1. Conduct a quantitative survey of a sample of families with autistic children What is Autism? Autism Speaks 2. Collect personal stories that reflect Autism, or autism spectrum disorder (ASD), The network of care for children with challenges facing families is a group of brain development disorders. The autism extends beyond simple healthcare. 3. Evaluate the perspectives of experts, ASD diagnosis is very broad, as there are many Organizations have emerged to help direct agencies, and centers different subtypes of autism, each having a wide families and caregivers to necessary resources, Deliverables: Database and Report range of severities. These subtypes are: autistic support groups, learning tools, and relevant disorder, childhood disintegrative disorder, information. The most prominent organization, Autism Speaks provided the team with two pervasive developmental disorder-not otherwise founded in 2005, is Autism Speaks. Their surveys to use in Morocco: a professional survey specified (PDD-NOS), and Asperger Syndrome mission statement is as follows: meant for any specialists in the field of autism, (“Autism Spectrum Disorder,” n.d.). Each type and a caregiver survey for families affected by “Autism Speaks aims to bring the autism of autism used to be its own diagnosis, but they autism. In-person interviews were held in community together as one strong voice to urge were all grouped into the general diagnosis of facilities for disabled or autistic children in order the government and private sector to listen to our ASD in May 2013. to conduct the caregiver surveys. A sample of concerns and take action to address this urgent convenience was used for the surveys. The global health crisis. It is our firm belief that, The basic symptoms associated with autism professional survey provided by Autism Speaks working together, we will find the missing pieces spectrum disorders are difficulties with social was used to interview teachers and autism of the puzzle” (“Mission”, n.d.). interaction and communication, and repetitive professionals including experts and doctors. A behavior. The severity of these symptoms can This NGO was founded by Bob and sample of convenience and snowball sampling vary greatly, making every case very different. Suzanne Wright in 2005. They were the identified our participants. A sample of Certain unusual behaviors, or not showing grandparents of a boy named Christian who was convenience was used for the surveys and each expected developmental behaviors, can often be diagnosed with autism. Since its founding it has team member worked with a translator to the indicators that a child may possibly have merged with three different autism organizations overcome any language issues, since most autism. Both parents and doctors should be on and has become the leading organization of families interviewed did not speak English. for any of these indicators. the lookout autism science and advocacy around the world. Evaluations are typically done by multi-person The organization is still looking to spread its An Interactive Qualifying Project submitted to the faculty of Worcester Polytechnic Institute in partial fulfillment of the requirements for the Degree of Bachelor Science. AUTISM SPEAKS: CASABLANCA AND TIZNIT | iv Throughout and after the in-person Improper Diagnosis provided by teachers in schools for children interviews, we collected personal stories that Major highlights from the data collected with disabilities and parents were unsure of the families were willing to share. This generated showed that children with autism or other quality of this care or what specifically their informal data to add to the report for Autism disabilities have not been receiving proper children were receiving. From this data we can Speaks for a better overview of the state of diagnosis, as most children remain deduce that the cities we have visited and autism care in Morocco. The team also undiagnosed or have other disabilities that had interviewed in lack the health care and services interviewed Oum Keltoum Dialmy, author of originally been wrongly diagnosed as autism. that families with autistic children are looking the book Parole d’Autiste, to learn the story of Many comments from parents pointed towards for. People do not have easy access to her experience with an autistic child. the fact that doctors did not know much about information and the lack of specialists and disabilities, so they just treat them all the same doctors in the field mean that children with and lump them under one general diagnosis of autism are not receiving sufficient care. “autism.” Some examples of this were shown in children that had Down syndrome, mental retardation, and even paralysis, but were told to just treat it as autism. Reasons for the improper diagnosis that came up were that most professionals only had high school degrees (not university degrees) and very little experience, and more specialized doctors are very far away from families. Many families had to travel over two hours to receive a proper diagnosis for their child, and not all families have the ability or means to do that. Spenser Martin conducting an interview with a caregiver Mackenzie Miner conducting an interview with a caregiver Results Lack of Resources Financial Struggles A caregiver needs survey, professional More findings also further highlighted a Our data has also revealed that there is a survey, and personal stories from families were lack of resources for autism in Morocco. If huge financial struggle for most families who all used to collect information of the current children do get properly diagnosed, they have have a child with autism. Some families state of autism care and awareness in Morocco. little chance of receiving treatment. Speech mentioned that they either wanted to or had cut 183 caregiver surveys and 24 professional therapy was the only type of treatment that a down on hours of work to give more attention surveys were conducted. Within the 183 significant amount of children were to their children, many of those same families caregiver surveys there were 123 in which the participating in out of all those listed in the mentioned