Why ‘Autism Diaries’ is advocating for more support for parents of an autistic child
Why ‘Autism Diaries’ is advocating for more support for parents of an autistic child
From long hours of driving to different therapists, to making individual learning plans, to extra study sessions and helping with the tiniest tasks that can be done independently, like getting dressed – the Life as a parent of an autistic child can be seen as nothing short of overwhelming, although it is also rewarding and comforting.
In light of Autism Month in April, we are digging deeper into family life for people with autism.
Inside the home of an autistic child, there are not just separate individuals, but a family that lives as one individual. Wherever the child goes or goes, the parents act as his shadow to help him navigate and go about his daily business. Sometimes it often feels like this parent is reliving their childhood or selling their heart to another independent soul. They are not only a parent, they are also their child’s teacher, coach, friend, manager and advocate or “PR” person.
But in the midst of it all, where can they find their own source of support and their right to better treatment and care?
Mai Al-Dahan, 43, is a freelance content writer and founder of Autism Diaries; the latter is a platform she founded last year to create a parent network and support group for those living with children with autism.
After a long and successful career in the media industry and rising to the famed position of Content Director, she had to abruptly quit her job as the demands of caring for her son grew and engulfed her. Currently, the only job that could support his schedule is as a freelance writer, which has allowed him more flexibility to take care of himself.
“I had to change my whole career because of him. And when I tried to go back to full-time work, it was very difficult because not all employers understand the fact that I need the other half of the day to be with him,” she told Egyptian Streets. “As mothers, we sometimes face discrimination in the workplace because we have children with special needs. But we also need financial support, and there aren’t yet any laws or policies that can help parents of children with autism get insurance coverage.
Children with autism often exhibit behavioral problems, which can include atypical eye contact, hyperactivity, and repetitive body movements such as rocking or flapping.
There are many misconceptions about Autism, mainly that it is a mental illness and they cannot bring anything worthwhile to society. However, there are many examples of people with autism who have had success and made notable achievements. Essentially, an autistic child’s brain just works differently, and they have a different way of being, like the way they communicate and interact with the world, expressing themselves openly and authentically in ways that aren’t usually not accepted in society.
For example, when an autistic child is stressed or overstated, they may often have loud public outbursts as they feel overwhelmed by emotions and sensory stimulation that are beyond their control. Additionally, neurological differences in autism will vary depending on where the individual is on the spectrum.
For many adults who have not been taught to manage autism, these behaviors have been identified as sometimes contributing to maternal anxiety and depression, as the relationship between stress and behavioral problems in autistic children results in increased parental stress. Studies have shown that factors associated with parenting stress in “children with autism include feelings of loss of personal control, lack of spousal support, informal and professional support.”
In Egypt, autism did not begin to attract the attention of the scientific community until the 1990s, which led to a delay in political and legal responses because there was no comprehensive data available on the disabilities. One of the most important research is “The Economics of Autism in Egypt” by Roger Lee Mendoza, which points out that autism in Egypt can lead to higher costs due to the investments of time and attention by the caregivers, and that making autism care more affordable should be a key health policy to avoid higher economic costs.
In 2021, the Egyptian government took an official step by announcing a five-point strategy to empower people with disabilities and involve them in all national projects and initiatives. At an event celebrating the International Day of Persons with Disabilities, President Abdel Fattah El Sisi gave directives to the government to establish a fund to support Egyptians with disabilities and for more specialized training to be provided to teachers working with children with special educational needs.
However, little attention is still paid to the families and parents of these children, with few opportunities or support networks. To combat this, “Autism Diaries” helps parents navigate the struggles, as well as overcome the grief and anger that stems from society’s lack of awareness of autism and its challenges.
“I was surprised by the complete lack of awareness that exists in Egypt. I was struck by the lesser awareness and amount of bullying that occurs in children and even passive aggressive bullying in adults, such as the use of words such as tawahod (the Arabic word for autism) as if it were a mental illness to describe children with autism. But it’s not a mental illness, it’s a lifelong illness,” Mai says.
“Through Autism Diaries, I wanted to create a parent network and support group, which can be a voice to rely on in the future that will help change the rules and laws that can allow my son to live a life as an independent adult and become more involved in society, like understanding his needs and what kinds of jobs he can do, and accepting him without judging his little intricacies that are different from what is socially acceptable.
By sharing her own experiences, Mai hopes to encourage other parents to overcome challenges more easily and change their mindset. Currently, “Autism Diaries” helps parents share tips and strategies for dealing with sensory issues, such as visual schedules, which can work very well in teaching them how to make their own bed, prepare their own breakfast or take a shower on their own.
In addition to creating online content, she currently plans to organize on-the-ground support events for parents. “I’m trying to find the right venues and create the right partnerships with psychologists, life coaches and sponsors who will take ‘Autism Diaries’ from virtual support to on-the-ground experiences where parents can network and support, and share ideas where we can help them overcome challenges,” she says.
Before her son was diagnosed at the age of two, Mai initially struggled to get a diagnosis because he is what is often called high functioning, which means children don’t have no intellectual disability, but may have deficits in communication, emotion recognition and expression, as well as social interaction. As a result, he lacked the most common signs of autism.
“There were no repetitive movements. There was some eye contact and so on, but he had speech delay issues. It took a while to find the right psychologist who would diagnose him at the age of two, because at the time they believed that children should not be diagnosed until they were around three or four years old, ” share May.
Autism is highly variable, which is why the word “spectrum” is used to refer to how autism is experienced differently by different people, and some may not be recognized or diagnosed until adulthood.
At the time, Mai’s family had already started therapy for their son, but the stress came not just from finding out their child has autism, but also from the responsibilities that inevitably come with the diagnosis.
“There was a lot of pain, grief, denial, disbelief and confusion. And there was a day when I realized I couldn’t feel sorry for myself. I have to inquire at I have to educate my family about it and I have to see what we’re going to do,” she said.
“I decided I would be like his manager. I dealt with his therapists and saw how he was progressing with each of them, then we changed a number of therapists until we found the one. he felt most comfortable with. I also spoke with the school and created an individual learning plan. We tailored the program to suit his learning needs, and I started to teaching my family and friends how to deal with him, how to talk to him, and now he’s much more comfortable with my sister picking him up from school if I’m too busy, so it’s really been a long trip.”
Fast forward to now, Mai’s son is now preparing to do his IGCSEs next year. He still needs learning support and still follows an individual learning plan, but with the help of his family, he was able to progress at his own pace during his student years.
Yet support cannot simply exist within the walls of one’s home. One of the main remaining challenges is acceptance by society, as Mai notes that he still struggles to make friends.
“Adolescence is synonymous with acceptance, friends and social community outside the home. But the most important thing I’ve learned is that I have to continue to be her advocate, her PR guy, and the person who puts the pieces of her life back together until one day, I hope he can do it without needing me. ,” she says.
As he continues this journey into adulthood, Mai worries about her own strength to continue giving him the support he needs.
“I have to take care of myself, my health and make sure I’m strong enough to be able to continue on this journey. That’s why the laws need to change to provide the right kind of support for parents, whether through insurance, emotional support or understanding employers.
“One day I won’t be here anymore and I want him to be able to survive in a world that doesn’t hurt him so much,” she says.
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