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Layan Damanhouri
JEDDAH – Autistic individuals still feel unwelcome in public places, the labor market, and getting their basic needs met. This was a common problem many parents of autistic children expressed at the second annual conference of Autism Day that took place at the Saudi Arabian Society of Culture and Arts, Jeddah.
“One day isn’t enough,” said one mother. “Our support group aims to help every mother all year round to train her child, spread awareness, demand rights, and learn new skills to help her child. An aware society is one we dream of.”
The 2-day conference that hosted various workshops and lectures by experts was organized by Mommy Cares support group who have recently been aligned with the Saudi Association for Special Education.
While no official statistics accurately show the number of autistic individuals in Saudi Arabia, numbers are predicted to reach up to half a million. Researchers and doctors agree that the rates are high and increasing.
“I wish for activity centers where they would offer activities, sports and games,” says Aisha Akhleej, a mother of a 13-year-old autistic son. There is only one in Riyadh but none in Jeddah.
“I definitely wish for my son to get a job now that I’m retiring,” says mother of two, Najwa Aseel, who has hopes in the new plans announced to start hiring autistic individuals in the labor market under Tawafuq Program by the Human Resources Development Fund (HRDF).
“We need clubs for youth to create an outlet for their energy,” said Nada Nazer, president of Mommy Cares. “We still need more diagnosis centers and other needs. I feel we are still behind than other places around the world.”
Mommy Cares support group, started in 2010 with 50 members, is a network with over 500 mothers today. Despite this success in supporting mothers in dealing with common challenges and sharing experiences, little has been achieved on an institutional level for autistic individuals in the Kingdom.
She further says, “Parents still complain that when they take their children to public places like restaurants or theme parks, they are not welcome. These things shouldn’t be anymore. These kids have a right to go out, get an education, and get treatment. There are policies and regulations but they haven’t been applied.”
The main initiative during the past year by the Ministry of Social Affairs was taking in charge of the fees of autism centers after much pressure by parents who previously paid for expensive costs.
She says, “Unfortunately, after speaking to parents, many of them are frustrated because they’re not able to complain about poor services or abuse, since they are not paying the fees. It backfired.”
Inclusion, according to speech language pathologist Dr. Heidi Al-Askari, is essential in allowing those with special needs to live a normal life and gain independence.
“It’s a basic human need of wanting to feel included,” she told Saudi Gazette. “It makes us feel we’re taken care of and we matter. It’s not surprising that people with disabilities also want to be included.”
“The reality with some individuals with disability is they never gain that independence. The other harsh reality is that their parents age and sometimes die. They may have been part of a group that no longer exists but they haven’t moved on. This is where the idea of inclusion and we, as a community, it is our responsibility not just the parents and the family.”
With twenty years of experience in the field and after traveling around the Kingdom, Al-Askari says big cities fail to reach that mindset as opposed to rural communities. In Unaiza, for instance, the Jaffali Association supports autistic children until they grow into adults and start working to eventually having their own families.
“To me, that’s the ideal standard because it takes them along their life journey and makes sure they have the support along the way.”
Al-Askari, who is also director of the Tawafuq Program, added, “We would like to create now more partnerships with the older kids to see how to include them in the workforce.”
When asked how a support group helps them deal with hardships, many mothers agreed it was helpful to a large degree. Aseel further said, “We support each other through sharing our experiences and helping each other out. It really lifted our spirits and made us stronger and gave us the chance to think broader and become more positive. This all reflects our work. I advise every mother who has a child with special needs to join a support group. They are amazing and gives a chance to see possibilities one doesn’t think of on their own.”
