Summary of Autism in Egypt from 1995-2018
In 1995 I returned to Egypt after finishing my degree in Australia. I worked in a special needs school for four years as School Psychologist while I finished my Post Graduate Diploma in Dyslexia. I discovered my passion for Autism so I travelled one summer and took the TEACCH training.
I came back and set up a classroom for children with Autism only using the TEACCH method. By 1998 I realized that there needed to be an entity specifically for Autism (with no other disabilities) so I set up the Egyptian Autistic Society. I started by giving sessions to the children and advising parents on what to do at home. I trained staff and started doing day trips in the community and called it the 'Saturday Social Club'.
Very quickly it became apparent that the children needed more than individual sessions so I set up a classroom and started the 'Head Start' full day program. I hired a Speech and Language Therapist who also started working with the children daily. I was approached by Helwan University through one of my trainees (Samah Kassem) and was asked to host their fourth-year students studying special education for practical work. Most of the students who did training at EAS ended up being hired by us to work in the classrooms.
We started offering home visits to teach the parents what to do at home and to generalize behavior to the home environment. I was receiving a lot of referrals through word of mouth.
Seventy per cent of the children were mis-diagnosed (sadly by the biggest Pediatricians in Egypt). Very few of the children were verbal until we learned and adopted PECS (Picture Exchange Communication System) and started teaching them properly.
I realized that my children needed to play and learn social skills in another environment with neurotypical children. I approached my daughter’s preschool in 2002 and started sending some of our more advanced children with shadow teachers. One day the owner of the preschool called me and asked me to come immediately. I went to find two women supervising from the Ministry of Social Affairs (which is the supervising body of nurseries and associations like EAS) demanding that we “remove these children as they are contagious to the nursery children.” After weeks and weeks of arguing we were able to put them back in the nursery.
I came back and set up a classroom for children with Autism only using the TEACCH method. By 1998 I realized that there needed to be an entity specifically for Autism (with no other disabilities) so I set up the Egyptian Autistic Society. I started by giving sessions to the children and advising parents on what to do at home. I trained staff and started doing day trips in the community and called it the 'Saturday Social Club'.
Very quickly it became apparent that the children needed more than individual sessions so I set up a classroom and started the 'Head Start' full day program. I hired a Speech and Language Therapist who also started working with the children daily. I was approached by Helwan University through one of my trainees (Samah Kassem) and was asked to host their fourth-year students studying special education for practical work. Most of the students who did training at EAS ended up being hired by us to work in the classrooms.
We started offering home visits to teach the parents what to do at home and to generalize behavior to the home environment. I was receiving a lot of referrals through word of mouth.
Seventy per cent of the children were mis-diagnosed (sadly by the biggest Pediatricians in Egypt). Very few of the children were verbal until we learned and adopted PECS (Picture Exchange Communication System) and started teaching them properly.
I realized that my children needed to play and learn social skills in another environment with neurotypical children. I approached my daughter’s preschool in 2002 and started sending some of our more advanced children with shadow teachers. One day the owner of the preschool called me and asked me to come immediately. I went to find two women supervising from the Ministry of Social Affairs (which is the supervising body of nurseries and associations like EAS) demanding that we “remove these children as they are contagious to the nursery children.” After weeks and weeks of arguing we were able to put them back in the nursery.
Meanwhile the rest of the children were doing social mainstreaming in the local community, learning how to walk safely in the streets, order food at restaurant and pay for their snacks at supermarkets.
Many of the children were academically very advanced so I wanted to enroll them into mainstream schools. This must have been one of the biggest challenges I ever faced. We were rejected and kicked out of so many schools it was depressing. The parents heard the nastiest comments and we were given the worst excuses as to why we had to leave. One of my 6 year old students touched a peer’s lips with his finger (sensory) and we were kicked out for ‘sexual assault’. Once I was bluntly told by a school owner “each chair you see in this classroom gets me 24000Le a year, so If I give you two chairs (one for my student and one for his shadow) how many 24k am I going to lose by having him in here'.
I had another school owner ask me “well how weird does he look?” before thinking about accepting a child with Autism at her school.
Finally in 2007, I was introduced to a lovely peaceful school owner who agreed to go through this with me one step at a time. We enrolled the children for a few hours each day with one of my shadow teachers. Each class had 4 ASD children, in two shifts (2 at any point in time). The children attended all subjects but were getting confused with the two languages taught at school. The decision to choose which language to teach the children in was a hard one. All literature says use one language, preferably your mother tongue. That would mean Arabic. Arabic in itself was like teaching two languages since spoken Arabic is completely different to written Arabic.
The schools which we were able to mainstream in were usually private language (International) schools. The classes were smaller, the books were more attractive and the curriculum was less demanding. We decided to teach academics in English and try and get an exemption from Arabic for the time being.
Our mainstreaming project went very well. I always knew that more needed to be done to help more children across the nation get early diagnosis, early intervention and eventually access schools. This meant teaching in Arabic, teaching a bigger pool of service providers who can reach a wider population.
Many of the children were academically very advanced so I wanted to enroll them into mainstream schools. This must have been one of the biggest challenges I ever faced. We were rejected and kicked out of so many schools it was depressing. The parents heard the nastiest comments and we were given the worst excuses as to why we had to leave. One of my 6 year old students touched a peer’s lips with his finger (sensory) and we were kicked out for ‘sexual assault’. Once I was bluntly told by a school owner “each chair you see in this classroom gets me 24000Le a year, so If I give you two chairs (one for my student and one for his shadow) how many 24k am I going to lose by having him in here'.
I had another school owner ask me “well how weird does he look?” before thinking about accepting a child with Autism at her school.
Finally in 2007, I was introduced to a lovely peaceful school owner who agreed to go through this with me one step at a time. We enrolled the children for a few hours each day with one of my shadow teachers. Each class had 4 ASD children, in two shifts (2 at any point in time). The children attended all subjects but were getting confused with the two languages taught at school. The decision to choose which language to teach the children in was a hard one. All literature says use one language, preferably your mother tongue. That would mean Arabic. Arabic in itself was like teaching two languages since spoken Arabic is completely different to written Arabic.
The schools which we were able to mainstream in were usually private language (International) schools. The classes were smaller, the books were more attractive and the curriculum was less demanding. We decided to teach academics in English and try and get an exemption from Arabic for the time being.
Our mainstreaming project went very well. I always knew that more needed to be done to help more children across the nation get early diagnosis, early intervention and eventually access schools. This meant teaching in Arabic, teaching a bigger pool of service providers who can reach a wider population.
I met with Doctors from the General Secretariat of Mental Health a branch from the Ministry of Health. We agreed that they would come to EAS and receive intensive training in Autism, diagnosis, skills assessment and Verbal Behavior (VB) program implementation. We then set up a classroom in Abbaseya hospital to treat families free of charge. The plan was to use the trained staff to train other staff until a unit was opened in every Egyptian Governorate (to date 3 units have been opened). A curriculum was devised, translated and published. It used a combination of several evidence based methods and adapted to our culture. We now had the first Egyptian Curriculum for autism.
Every time we tried collecting funds for training or therapy we were faced with the same issue which was very apparent in schools; people had no idea what Autism was. We began organizing and having big awareness campaigns in April where we marched, ran marathons, invited celebrities and media, appeared on tv shows released articles everything we could think of to increase awareness.
I became Autism Speaks ambassador in Egypt and joined the international 'Light It Up Blue' campaign where each country lights up a monument blue for autism on April 2nd as a sign of hope for families.
A professional advertising agency, which belongs to one of my close friends helped us pro bono with our campaign. One of the parents came on board to manage the campaigns and PR.
I became Autism Speaks ambassador in Egypt and joined the international 'Light It Up Blue' campaign where each country lights up a monument blue for autism on April 2nd as a sign of hope for families.
A professional advertising agency, which belongs to one of my close friends helped us pro bono with our campaign. One of the parents came on board to manage the campaigns and PR.
Over the years we lit up in blue the Pyramids, Sphinx, Luxor Temples, Cairo Tower, Citadel, Cairo Opera House, 57357 Cancer Hospital, Stock Exchange, Banks, Shops, Malls, Schools, Universities, The Suez Canal, Bin Ban Solar Panel Plants, Alexandria Library and many more. More and more people were asking about Autism and learning about it. However, in an ideal world children would grow up already knowing what is Autism and having friends on the spectrum. So, we decided to target the awareness bottom up….through schools. We approached several schools and gave the students lectures and activities related to Autism. Inserted 'Autism Awareness Day' in their school calendars where the students had to go in school wearing blue and make up a dance, poster, bake sale any activity that encouraged Autism awareness. We took our ASD children to several schools to spend the day. Finally, we trained senior students to be our ambassadors in schools and they went to all the younger age groups and showed their presentations.
We also approached University Psychology clubs and had them do the same at their Universities in addition to helping by volunteering and having booths in malls, running marathons etc. Shops were making blue cupcakes, cakes, cookies doughnuts etc. McDonald’s made a blue drink and sundae for Autism….. we made Autism fashionable… everybody wanted to be involved, local radio stations, newspapers and social media outlets joined the cause and published stories, held interviews and more. The same companies that were refusing to meet us or fund our campaigns were now calling to be involved. Some companies were even stealing our logos and putting them on their products… but it was all heading in the direction we wanted.
Every year we have a theme with a specific hashtag one year the hashtag went viral on social media it was trending so much that I got a call from Facebook's Head Office in the US informing me they were seeing a positive trend coming from Egypt and they wanted to help. So, they provided us increased exposure both nationally and internationally. NRP a National radio station in the US contacted me and broadcast a live interview over their stations about Autism awareness in Egypt. Following this it became easier to approach Governmental Bodies and advocate for services and rights as most of this was in the public eye covered by media.
We also approached University Psychology clubs and had them do the same at their Universities in addition to helping by volunteering and having booths in malls, running marathons etc. Shops were making blue cupcakes, cakes, cookies doughnuts etc. McDonald’s made a blue drink and sundae for Autism….. we made Autism fashionable… everybody wanted to be involved, local radio stations, newspapers and social media outlets joined the cause and published stories, held interviews and more. The same companies that were refusing to meet us or fund our campaigns were now calling to be involved. Some companies were even stealing our logos and putting them on their products… but it was all heading in the direction we wanted.
Every year we have a theme with a specific hashtag one year the hashtag went viral on social media it was trending so much that I got a call from Facebook's Head Office in the US informing me they were seeing a positive trend coming from Egypt and they wanted to help. So, they provided us increased exposure both nationally and internationally. NRP a National radio station in the US contacted me and broadcast a live interview over their stations about Autism awareness in Egypt. Following this it became easier to approach Governmental Bodies and advocate for services and rights as most of this was in the public eye covered by media.
In 2014 we managed to get military exemption for young men with a diagnosis of Autism, laws were changed to facilitate inclusion (which is now a right not a privilege).
Part of EAS's role is to provide training for parents and professionals. A series of training was held for schools, centers and pediatricians. We set up a units for Autism in Ismaleya, Sharjah and Sudan as well as in several schools in Cairo. Students from the American University in Cairo, Helwan University and Institution of Social Work are now regularly training at EAS, this is an addition to the schools that do their community work with us.
We host professionals from all over the world to teach us the latest most up to date methods and programs.
Teachers working in Ministry of Education special need schools and Ministry of Health units are invited to attend free of charge. Our mission is not only to spread awareness but more importantly to spread knowledge. I have always believed that sharing knowledge empowers you and people should not be threatened by it.
We host professionals from all over the world to teach us the latest most up to date methods and programs.
Teachers working in Ministry of Education special need schools and Ministry of Health units are invited to attend free of charge. Our mission is not only to spread awareness but more importantly to spread knowledge. I have always believed that sharing knowledge empowers you and people should not be threatened by it.
In 2014 myself and 2 partners began developing a project called 'Kodarat' In May 2015 we were invited to sit with the President and share our project.
The project was a dream of ours. It was envisioned and designed to be a huge piece of land that contained all the services required by this population in one place, free of charge.
This was our gift for Egypt. The buildings were designed by Dr Ibrahim Karim and Raef Fahmy world renowned architects who donated their time and effort.
It was designed using bio-geometry to decrease seizures and promote mental and physical well being . Fatma and Ingy my partners had dreamed of such a place to leave their children in if they were ever no longer able to look after them as they aged.
The project promoted inclusion as it was attached to a sports club and a mall (students were to exercise at the club and work at the mall). It included several levels of supervised living starting from full supervision to complete independent living. It included a mainstream school, special units, vocational workshops and outlets to sell products. A training academy for shadow teachers and staff was also attached to ensure an on-going supply of trained staff.
It was designed to act as a hub of knowledge and quality control, improving the already existing centers and adding to their knowledge. The President was very impressed by the project and sent us to his consultants to work with the Military Architectural Organization to finalize the drawings. He allocated 6 pieces of land all over Egypt to build 6 centers. We worked for months with the Military Architectural Organization then all of a sudden we received word the project had been stopped.
We soon found out that a certain person in a position of power ignited by jealous competitors pushed to shut it down stating that it does not promote real inclusion and its was like “throwing them in the outskirts and hiding them“. Until this day an alternative has never been proposed or created. Residential homes exist all over the world to help children whose parents have passed away or those with severe complex needs. Thousands of children were denied the right to free treatment as well as a safe home and therapy due to political issues and jealousy. Unfortunately I learned at an early age that once politics becomes involved many people start opposing you just for their own personal benefit rather than being true to the cause.
The project was a dream of ours. It was envisioned and designed to be a huge piece of land that contained all the services required by this population in one place, free of charge.
This was our gift for Egypt. The buildings were designed by Dr Ibrahim Karim and Raef Fahmy world renowned architects who donated their time and effort.
It was designed using bio-geometry to decrease seizures and promote mental and physical well being . Fatma and Ingy my partners had dreamed of such a place to leave their children in if they were ever no longer able to look after them as they aged.
The project promoted inclusion as it was attached to a sports club and a mall (students were to exercise at the club and work at the mall). It included several levels of supervised living starting from full supervision to complete independent living. It included a mainstream school, special units, vocational workshops and outlets to sell products. A training academy for shadow teachers and staff was also attached to ensure an on-going supply of trained staff.
It was designed to act as a hub of knowledge and quality control, improving the already existing centers and adding to their knowledge. The President was very impressed by the project and sent us to his consultants to work with the Military Architectural Organization to finalize the drawings. He allocated 6 pieces of land all over Egypt to build 6 centers. We worked for months with the Military Architectural Organization then all of a sudden we received word the project had been stopped.
We soon found out that a certain person in a position of power ignited by jealous competitors pushed to shut it down stating that it does not promote real inclusion and its was like “throwing them in the outskirts and hiding them“. Until this day an alternative has never been proposed or created. Residential homes exist all over the world to help children whose parents have passed away or those with severe complex needs. Thousands of children were denied the right to free treatment as well as a safe home and therapy due to political issues and jealousy. Unfortunately I learned at an early age that once politics becomes involved many people start opposing you just for their own personal benefit rather than being true to the cause.
I decided to refocus my energy and in some ways people may think this appears as the smaller picture, but in fact this is the whole picture, the children, I put all of my energy solely into the children, to help there as much as I could. At this time this included working on school mainstreaming policies, they still needed a lot of fine tuning. Schools were still not accepting children with a diagnosis and were using IQ scores as excuses. The law stated that children with autism had to have an IQ score 65 or higher to be mainstreamed. The IQ tests administered were verbal and hence yielded very poor scores. Schools did not have a specific plan to follow or support once they accepted the children. Some schools were charging the parents extra or placing their children in resource rooms all day. More work is still required within the schools.
The children got older, some were able to sit for 12th grade examinations (SAT Level) and some were not. We approached the American University in Cairo and met with their learning support department. This year we have our first student enrolled in university. We are working closely with the learning support department to provide him with the accommodations and assistance he is entitled to and that he needs to succeed.
Last April a job exposure fair was organized to expose our young adults to the various jobs available within their local communities. More than 20 companies joined and were keen to hire people with autism. We are currently in the process of assigning people to jobs and training.
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