FOUNDING STORY
by Claudia De-Meis
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As I sit down to write this, memories of our incredible journey flood my mind - the struggles, sacrifices, and the triumphant moments that led to the birth of "Art for Autism." This initiative is a product of my personal experience as a parent, navigating the uncharted waters of Autism Spectrum Disorder (ASD) and finding ways to empower my son, August, to reach his full potential. It was this journey that shaped Art for Autism - a platform dedicated to early detection, intervention, support and raising awareness about ASD.
Our lives took an unexpected turn when August was just 2 years old. During a family trip to Australia, the time difference and unfamiliar surroundings surfaced red flags that couldn't be ignored. It became evident that our son was autistic, and with no prior knowledge about ASD, we embarked on a journey of discovery. We researched, sought professional advice, and braced ourselves for the challenges that lay ahead.
Early on, we learned about the critical importance of early intervention. Time was of the essence, and we knew we had to act fast to give August the best chance at a fulfilled life. Our trip was cut short, and we returned to London, determined to provide him with the support he needed. As we turned to the National Health Service (NHS) for support, we encountered significant hurdles along the way. The process proved challenging as the NHS typically doesn't diagnose until the age of 4 and the support available was limited.
To add some insight here, after the age of 4 the brain undergoes significant development, making it more challenging to teach and break down boundaries in individuals with Autism Spectrum Disorder (ASD). This crucial aspect underscores the urgency of early intervention during the period when the brain is most malleable, typically between the ages of 2 and 4. Late detection and intervention often leads to costly specialist schools which are funded by the government. While some children may benefit from specialist schools, providing the necessary support, therapies, and interventions during early years, can aid development of the skills needed to thrive in mainstream educational settings. Early detection and intervention enables the opportunity for individuals to reach their optimal potential - Providing a fulfilled life, not only for themselves but also for their families that care for them. Funding needs to be redirected and utilised more efficiently.
With this revelation we faced tough decisions in order to give August the best possible start. We decided to forgo purchasing our first home in London to redirect the funds toward privately funding an intensive early intervention program. The cost was steep, but we were driven by a desire to give August the tools he needed to overcome the obstacles he may face. The sacrifices paid off in ways we could have never imagined. August started to make remarkable progress. With the help of his dedicated team of tutors and therapists, he began to talk and develop at a rapid rate. Daily data recording and meticulous tracking allowed us to witness his growth firsthand. To give you an example, within a six month period, he caught up by a whole academic year.
Our lives changed dramatically during this period. Early intervention programs demand full-time dedication, I was currently on maternity leave with my second son and my return to work had to take a backseat. We embraced this new reality wholeheartedly, knowing that we were laying the foundation for August's future. We became his advocates, his tutors and provided him with everything he needed to flourish. When August started school we secured an EHCP to enhance his journey further but this quickly became a huge burden. Agreed services weren’t delivered, along with other errors and misjudgements that disadvantaged him. We faced many ongoing legal battles, one which resulted in a tribunal.
Despite ongoing complications and battles with the Local Authority, August continued to flourish under his early intervention program. He loved his tutors dearly and still talks of them fondly. They made learning fun and not only were they a support for August they were a support for us. They became an extension of our family. August recently transitioned seamlessly from a small independant school to a mainstream school and without them this wouldn't be possible. He no longer requires any additional support or an Education Health Care Plan (EHCP). He is an intelligent, funny, and loving little boy, who challenges us and his school teachers daily with his advanced reading, writing, and maths skills. He loves to paint, cook & learn and can tell you about every species of insect, penguin or dinosaur known in existence. When he grows up he wants to be an artist! We couldn’t have wished for a better outcome for him, he brings us endless joy everyday.
August's progress inspired us to establish "Art for Autism." We wanted to create a fundraiser for a charity that not only raises awareness about early detection and intervention but also provides resources and support for families facing similar challenges. Our aim is to empower parents with information and education through a mobile application, to help them recognise the early signs of autism, support them on their next steps and connect them directly with experienced professionals who can guide them on their own early intervention journey. Finding a team and setting up a program can be extremely challenging. There is currently not one source of information and you have to enter many social groups through WhatsApp & FaceBook to secure services. It can be a very overwhelming process.
Through Art for Autism, we envision a future where every child on the autism spectrum has access to the support they need to thrive. Our initiative will provide funding for those who cannot afford early intervention programs and facilitate training opportunities for dedicated professionals. The U.K. needs more trained and skilled tutors to facilitate the needs of ASD individuals. My personal journey as a parent has led me to an understanding of the importance of early detection and intervention and the limitless potential of every child on the spectrum.
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Throughout our journey, we were fortunate to encounter an extraordinary woman whose unwavering support, love, and kindness became instrumental in our pursuit of achieving our goals. Her significance will always hold a special place in our hearts. Thank you ‘M’.
Additional thanks to Liza. The impact she had on our lives is invaluable and we are forever grateful. Liza is a fully qualified BCBA and helped us to facilitate August’s program. She taught us everything we know! I have never met anyone so giving, passionate and determined. It was Liza that helped us recognise the dis-jointed system and inspired us to set up this organisation. Our mobile application will be named after her - a fountain of knowledge and expertise!