Siena Castellon has achieved a lot during her eighteen years. In 2016, after struggling to find age-appropriate support for her ADHD, dyslexia, dyspraxia and autism, Ms Castellon set up Quantum Leap, an online mentoring programme for young people with learning difficulties. The site now has thousands of subscribers globally. Then, in November 2018, she launched Neurodiversity Celebration Week, a campaign to encourage schools and universities to celebrate the talents of neurodiverse children. Most recently, Ms Castellon was selected as one of seventeen Young Leaders for the Sustainable Development Goals (SDGs), a group which aims to work with the UN to lead efforts to achieve the SDGs.
The inspiration behind Ms Castellon’s activism comes from her own struggles growing up in an ableist world.
“Being neurodiverse has shaped the person I am. Being neurodiverse in a world that is intolerant of people who are different is incredibly challenging. My life has been a constant battle to overcome societal prejudices, disability discrimination, and a seemingly endless series of obstacles and setbacks. I was frequently targeted and bullied at school to the point where I had to change schools to be safe. Many of my teachers also overlooked my strengths and mischaracterized my abilities. I had teachers tell me I was stupid and lazy.
My negative experiences motivated me to dedicate myself to advocating for neurodiversity equality and acceptance. I want future neurodiversity generations to have more positive and fulfilling childhoods and school experiences.”
Such was Ms Castellon’s desire for younger neurodiverse people to face fewer obstacles in life than she had encountered herself that she began researching for information and resources that would help herself and others. What she found wasn’t very helpful.
“When I started searching online for information and resources, I found everything was focused on supporting the parents of neurodiverse children. There were no resources focused on helping us. This seemed odd to me since we are the ones who need the information and guidance the most.”
So, at the age of just thirteen, Ms Castellon decided to create her own site for neurodiverse young people and children: Quantum Leap. Its work is wide-reaching.
“My Quantum Leap work mainly involves providing guidance, insights, and advice on overcoming some of the challenges that neurodiverse children face at school. I have over 800 subscribers and receive dozens of emails a week from children, parents, and teachers asking for my advice on a wide range of neurodiversity-related issues.”
Young Leader for the SDGs
Being selected as a 2020 Young Leader has aided Ms Castellon’s work and activism, as she explained.
“Since I am still a teenager, having the endorsement and support of the UN Youth Envoy has given me the legitimacy and credibility to take my advocacy to the next level. Being a Young Leader has opened up a lot of opportunities that wouldn’t otherwise have been available to me. For example, it has allowed me to meet and collaborate with representatives from world-renowned organizations, such as the World Health Organization and Human Rights Watch.”
Asked what her work as a Young Leader has involved so far, Ms Castellon responded that:
“It has focused on advocating for the rights of disabled youth. In December, I spoke at the Convention on the Rights of Persons with Disabilities (CRPD) high-level side event on protecting and promoting the rights of young persons with disabilities. I plan to use my two-year role to spotlight and advocate for the inclusion and equality of disabled youth.”
More to Do
However, although her Young Leader role has given Ms Castellon and her work a great and deserved boost, there is still much to be done to tackle ableism. The current Covid-19 pandemic has highlighted and exacerbated the obstacles neurodiverse people face. However, it has also shown that solutions to these obstacles are possible.
“The pandemic has had drawbacks and benefits. Autistic people struggle with change. Almost overnight, the pandemic radically disrupted our lives and brought about drastic changes. The closure of schools and government indecision on students taking exams caused youth significant distress. Eventually, the government decided to allow teachers to determine our grades. Unfortunately, this approach put neurodiversity students at a significant disadvantage because teachers tend to underestimate and underscore their abilities.
On the other hand, despite being in lockdown, for many of us, the world has become much bigger. The shift from in-person meetings to virtual platforms like Zoom and Skype has allowed us to engage and participate in opportunities that may not have been possible or accessible to the neurodiversity and disabled community.”
Ms Castellon also spoke about the difficulty of being a woman with autism. Whilst autism in men and boys is widely and more easily recognised, in women and girls, autism presents differently and often more subtly, causing it to be underdiagnosed. Ms Castellon spoke about the problems this brings and how she hopes her work will help combat it.
“Unfortunately, there is still a huge gender imbalance in how autism is diagnosed, understood, and supported. I am often told that I look “normal.” I also have people question whether I am autistic. These comments and assumptions are based on societal stereotypes of what autism is and what it looks like. I hope that my work as a Young Leader helps to dispel these misconceptions, broaden people’s definition of autism, and change people’s perceptions so that autistic girls get the support and understanding they need to reach their potential.”
Schools and Workplaces
To help further tackle these stereotypes and assumptions, Ms Castellon launched Neurodiversity Celebration Week in 2018. The project has been hugely successful, with over 900 schools worldwide planning to take part in 2021.
“My experience has been that schools focus on our weaknesses and neglect to recognize our strengths. Always highlighting our deficits can make us feel as if there are limitations to what we can achieve. I think it’s essential to tell neurodivergent students that although they may not necessarily excel at school, their difference and unique way of thinking will be assets in the real world.
In addition to celebrating and showcasing the talents of neurodiversity people, the initiative also aims to educate teachers on how to identify and support neurodiverse students. Although about 20% of students are neurodiverse, in England, teachers do not receive any training on how to help these students. Ultimately, Neurodiversity Celebration Week is about promoting acceptance, tolerance, and understanding of people who are different. We are continually being told that being “different” is a negative quality, but I see it as a gift.”
Asked what else schools (and workplaces) can do to become more accessible to and accepting of neurodiverse people, Ms Castellon responded that:
“Schools and workplaces need to remove the barriers and obstacles that are holding back neurodiverse people. Some of the greatest contributions and scientific discoveries that have revolutionized the way we live our lives were made by neurodiverse people. Over 50% of NASA are reported to be dyslexic. Some of the world’s best scientists and computer programmers are autistic. Yet, many of our strengths and talents are under-utilized and wasted.
At work, we are often unable to get our foot in the door because our neurodiversity is held against us. One of the many ways schools, universities, social impact charities, and workplaces can help accommodate neurodiverse people is by broadening their inclusion and diversity policies and initiatives beyond race, gender, and socio-economic background to also include neurodiversity and disability.”
Unless we start more actively including neurodiverse people in society, we risk missing out on the fantastic and varied ways of thinking and ideas they may bring. As Ms Castellon neatly summarised:
“Disability is the last frontier of equality and inclusion. It is time for a collective societal awakening that recognizes, values, and accepts us.”
Meet the 2020 class of Young Leaders: