'Hear My Voice' by Step by Step in collaboration with Double Tree by Hilton, Al Sadd, was an exclusive event that prioritised the voices and opinions of parents who are the centrifugal force in a child’s journey with autism.
The event focused on autism awareness, understanding, and support, it was explained in a statement. The aim was to empower attendees through knowledge sharing and engagement with specialists.
Throughout the event, parents and caretakers were encouraged to actively participate, ask questions, and share experiences to foster meaningful connections and act as catalysts for change, ensuring comprehensive support and answers are provided.
A panel of expert speakers brought their expertise and insights to the discussion and answered the questions put forth to them.
Leyla Mroueh, public affairs manager for Sasol, who leads Accessible Qatar and actively promotes neurodiversity as an asset, said, “it is a Superpower” which is crucial for the future's job market, as predicted by data scientists.
Leyla stressed on the neurodiverse individuals' unique insights and minds that cannot be replicated by AI technologies. And rightly so, she advocates for neurodiversity awareness and supports community-based initiatives led by communities and organisations like Step by Step.
She emphasised the importance of gathering community insights, to enhance support and accessibility for neurodiverse individuals.
Parents at the event presented several concerns over topics such as genetic testing, medications, evidence-based interventions and stem cell therapy and other treatments that may not have the evidence but is still prevalent in the society.
In response, Dr Muhammad Waqar Azeem, (chair, Department of Psychiatry, Sidra Medicine), shared his insights and referenced the BRCA study in Qatar and the role of whole genome sequencing in ongoing research. The discussion also covered the evolving understanding of autism's likelihood in siblings, contrasting current prevalence rates in the US and Qatar with past views.
He was applauded for stressing on the mental health of parents of children with neurodiversity, especially the mental health of mothers. As quoted 70%-80% of mothers caring for children with autism present had depression and anxiety. Children will not do well if their mothers are struggling. So that is the most important thing about intervention, family first and child after that, he said.
In response to the questions on Stem Cell therapy, he critiqued the efficacy, legality, and scientific backing of stem cell therapy versus other evidence-based therapy approaches, noting the lack of publication in reputable journals. Emphasising the need for evidence and cautious exploration of unproven treatments, the discussion advocates for legal and scientific scrutiny in choosing interventions.
Panel member Dr Kadhija Ziana Vamanjoor, a renowned special care dental practitioner from the UK, emphasised on how each child is unique, and interventions should be tailored to their specific needs and developmental trajectory. What works for one child may not work for another.
Dental health is essential for children with developmental disorders, and early exposure to dental visits and good dental hygiene practices should be encouraged to prevent dental issues.
Ayesha al-Amari, co-founder and partner for the Autism Parents Platform, served as a role model for parents on how to advocate for their child’s needs and also highlighted how her support group for parents garnered so much love over the last few years and through which they continue to support other parents and bring about awareness of autism.
She discussed the importance of seeking help whenever needed and how to help build sibling relationships from her own experience of raising neurotypical and neurodivergent children.
Double Tree by Hilton, Al Sadd deserves a special mention as they provided their best hospitality and support that contributed to the success of the event. The event was a huge success and aligned with Step By Step’s mission for spreading awareness and advocating for empathy, inclusion and kindness towards all those with unique abilities. Parents found a sense of relief and gathered support as they interacted with each other.
"We are optimistic that this has left a long lasting positive impact and will empower them to be better advocates for their children and also realise that they are not alone on this journey," the statement added.
