This year’s World Autism Awareness Day theme is “Transformation.. Towards an Inclusive World of Neurodiversity.”
When *Ahmed was young, his mother spent significant energy searching for a ‘cure’ for his autism. She only wanted the best for him, as his diagnosis had initially sparked an element of grief and a worry about what life would look as he grows older.
As time passed, Hasna realised that what she was trying to cure became her biggest lesson and her son’s biggest gift. Ahmed, her now 16-year-old autistic son, helped her grow and understand that neurodiversity is also part of the diversity of the human fabric.
Now, Hasna Nada is a CEO, advocate and writer who aims to make people understand the disorder, instead of fighting it.
“The journey as an autism mother of my now 16-year-old son has been challenging at times but so insightful,” Hasna told Doha News.
“For the longest time, I wanted to “cure” him and change him to fit society because I believed the world would not be kind to him and understand. But over the course of a decade, I realised my son was my biggest teacher, I came to observe him and understand him and spent a lot of time in his world until I no longer wanted him to change, rather change the perception of people from stigma to one of acceptance and compassion.”
Ten years later, Hasna’s insightful growth was put up to the test when her now-6-year-old son also received his autism diagnosis. Thankfully, her reaction was quite different. She felt some sort of relief this time, she explained.
“It was like ‘I see you and understand you and now I can make sense of the things you do and support you better’. This was [my] growth and change in perspective which is really where the field is going.”
Hasna shared her story on Sunday, 2nd April, which marks World Autism Awareness Day— a date dedicated to raising awareness about Autism Spectrum Disorder (ASD) and helping break the stigma surrounding it.
The date was initially approved by the United Nations following a proposal submitted by Qatar in 2007. The campaign was supported by the Chairperson of the Qatar Foundation for Education, Science, and Community Development, Sheikha Moza bint Nasser, and received unanimous approval.
The World Health Organisation estimates that worldwide, about 1 in 100 children has autism, and the numbers keep increasing every year.
In recent years, more attention has been brought to the disorder to raise awareness and erase cultural misconceptions in the Gulf region. This has enabled hundreds of families to understand their children and provide the support they needed to grow up in healthy households.
However, more needs to be done, and a better comprehensive understanding of what neurological diseases mean might save the lives of thousands of children, as parents continue to scout for ways to support their children.
What is Autism?
Autism, or ASD, is a developmental disorder that affects communication, social interaction and behavior. It is a spectrum disorder, meaning that it can present itself in many different ways and with varying degrees of severity.
Some people with ASD may have significant language delays and struggle to communicate effectively, while others may have above-average intelligence but struggle with social interaction and repetitive behaviours. The disorder is 4 times more common in boys than girls, according to CDC.
Over time, the abilities and needs of autistic people vary and can evolve, and while some can lead a normal life and live independently, others need lifelong care and support.
“Autistic individuals operate and process the world differently and we should allow them to be. Autism is a spectrum disorder and just like not all autistic individuals are savants also not all of them have an intellectual disability,” Hasna explained.
“Being autistic doesn’t mean not having the chance to lead a great and meaningful life, as I said we must learn about them, observe and understand them in order to accommodate their needs, be it at home, in society and the classroom. They have the right to be accommodated and accepted as they are.”
There is no known single cause of autism, but research has shown that genetic and environmental factors can play a role in its development. A study published in the journal Nature found that certain genetic mutations can contribute to the development of autism, while environmental factors such as exposure to toxins during pregnancy may also increase the risk.
However, autism is not a new disorder, but it has gained more attention in recent years thanks to the internet and online advocates pushing for more awareness. It was first described by Dr. Leo Kanner in 1943, and since then, researchers have made significant progress in trying to understand it.
One of the most significant advances in recent years has been the recognition of the importance of early intervention for children with ASD. According to several studies, many symptoms of ASD can be recognised from as early as 24 months of age.
With that being said, early intervention can help children with autism develop communication and social skills, which can improve their long-term outcomes.
“It is important to pay attention to the red flags in the early childhood years as early intervention is usually effective in teaching remediating foundational skills. Some of the characteristics of autism include lack of eye contact, sensory sensitivities, speech delay, rigidity, repetition and special interests,” Hasna, a mother of two autistic children, explained.
“Autism is a lifelong condition and ideally persons affected develop strategies and self-advocacy skills, which are necessary.”
People with autism also often have repetitive behaviour patterns, which can be increasingly difficult to break, such as:
- Performing repetitive movements like rocking their bodies back and forth
- Having specific routines that can’t be disrupted
- Developing self-harming behaviours such as biting and head-banging
- Fixating on specific objects or activities
- Having very particular food preferences or specific aversions to certain food textures
- Tend to become extremely fixated and fascinated with a particular subject, fact, or detail
A tightrope preventing early intervention: where to get help in Qatar
In some cultures, the stigma surrounding autism can prevent parents from seeking early intervention services for their children. In the Gulf region, for example, there is a lack of understanding about autism which can lead to misconceptions about the disorder.
Some parents may believe that their child’s behaviour is due to bad parenting, and they may not seek help until the child is older, experts have explained.
Hasna told Doha News that the stigma and lack of services were her biggest challenge a long time ago, especially in the region due to the lack of understanding of the condition. However, that is changing now, she said.
“I think the stigma is lifting but also because the numbers are rising and can no longer be ignored so this is a good thing. I have learned to accept that the most important thing is that my son is happy, safe and loved. I put this above academic and societal achievements.”
For autism to be fully understood and to break the decades-long stigma, it is essential to address the cultural factors that can prevent parents from seeking help for their children.
In Qatar, for example, the government has taken steps to increase awareness about the disorder and improve access to services for families.
The Qatar Autism Society is a non-profit organisation that provides support and resources to families affected by autism. The entity offers workshops, training, and other resources to help parents understand and support their child.
In addition to the Qatar Autism Society, there are several other organisations and resources available to families affected by autism in Qatar. The Hamad Medical Corporation’s Child Development Center provides assessment, diagnosis, and treatment for children with developmental disorders, including autism. The centre also offers parent training and support groups.
The Autism Resource Centre Qatar is another organisation that provides support and resources for families affected by the disorder. The centre offers a wide range of services, including assessment, diagnosis and treatment, as well as support groups, workshops and training.
Hasna also created her own digital platform Learn Autism, which is for parents and caregivers of individuals with the spectrum disorder.
The platform is available both online and as an app, and includes extensive and easy-to-access content on every aspect of life on the autism spectrum.
“It was developed to support parents in understanding their child more and be empowered in making informed decisions in their autism journey. Learn Autism includes in house and visiting experts and provides evidence based information on how to best support your loved ones with autism through the many phases of life,” she explained.
Tips on how to support your child at home
Understanding autism requires more than just recognising the symptoms; it involves understanding the underlying causes, cultural factors, and the resources available to support families affected by the disorder.
While much progress has been made in recent years, there is still much work to be done to ensure that all children with autism receive the support and resources they need to thrive.
Here are some tips for supporting children with autism:
- Establish a routine: Children with autism thrive on routine and structure. Try to establish a predictable schedule for their daily activities, such as mealtimes, playtime and bedtime.
- Provide clear instructions: Children with autism may have difficulty understanding instructions that are vague or too complex. Use simple and clear language to communicate with them.
- Use visual aids: Many children with autism respond well to visual aids such as picture schedules, charts, and diagrams. These can help them understand and remember routines and tasks.
- Create a safe and calming environment: Children with autism may be sensitive to certain noises, lights, or textures. Try to create a calming and safe environment for them, such as a quiet space with soft lighting and comfortable furniture.
- Encourage social interaction: Children with autism may have difficulty with social skills, but it’s important to encourage them to interact with others. You can do this by setting up playdates with other children, enrolling them in social skills groups, or participating in community activities.
- Use positive reinforcement: Positive reinforcement is a powerful tool for motivating children with autism. Praise and reward them for good behavior, and use positive language to redirect unwanted behavior.
- Seek professional help: If your child is struggling with autism, it is important to seek professional help. A qualified therapist or counsellor can provide support and guidance for both you and your child.