'The Spectrum Girl’s Survival Guide' by Siena Castellon
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11 Nov 2020, 4:55 am
Siena Castellon: 'Autistic people are really struggling with how uncertain things are'
Quote:
As an autistic person, Castellon values a schedule and is most at ease with life when things are meticulously planned. So the unpredictable nature of the last eight months has been challenging to say the least, not only for the 18-year-old but for the dozens of young people with learning difficulties she mentors through her online platform Quantum Leap.
Castellon, who has ADHD, dyslexia and dyspraxia as well as autism, set up the mentoring forum in 2016 when she was just 13, after struggling to find age-appropriate support. It has since grown to reach 1,533 subscribers globally and Castellon supports up to 10 children a week via email, as well as parents seeking advice.
“The new [national] lockdown measures are causing lot of anxiety for people like me,” she says. “It’s difficult to wake up one morning and be told you can’t leave your house or go to school.”
Others who contact her have received abuse for not wearing masks on public transport even though those with autism are exempt because face coverings can trigger anxiety.
As well as mentoring, Castellon is also a campaigner for children’s rights. In November 2018 the teenager launched Neurodiversity Celebration Week. The campaign encourages schools and universities to celebrate the talents of children with learning differences. More than 580,000 students from 850 learning institutes around the world take part.
Now her efforts have been recognised as one of three finalists to be considered for the prestigious international children’s peace prize.
Castellon always sensed she was different from other children. “I was an old soul as a kid, I had no patience for make-believe and playing,” she recalls. “Other kids wanted to run around and play games, which stressed me out because of my sensory processing disorder [SPD].”
For Castellon everything is brighter and louder and touch is amplified.
“As I got older some social issues I was having become more noticeable. I found it hard to maintain friendships and was bullied and ostracised.”
It wasn’t until she was 12 that Castellon got a diagnosis, following a spell of extreme anxiety. “I could hear the electricity in the walls and my own heartbeat,” she remembers. “It got to the point where I couldn’t go outside and my mother took me to the doctor. Looking back, I’m shocked it wasn’t flagged earlier.”
Castellon thought the diagnosis would make her life easier, but it didn’t. “There was a moment when I thought I would be understood and accepted but nothing changed.” She continued to be bullied and unsupported by teachers at school. She moved school 11 times in search of one that would not only accept her for who she was but that would sufficiently challenge her as an academically gifted student.
"The government needs to prioritise addressing the “obscenely long” autism diagnostic assessment waiting times, she insists.
Castellon also finds the representation of autism in film and media unhelpful.
Not only is female representation lacking but autistic characters are commonly played by neurotypical actors
Growing up, much of the advice for autistic girls was written by male academics in their 40s, claims Castellon. It drove her to write The Spectrum Girl’s Survival Guide: How to Grow up Awesome and Autistic, published earlier this year. It covers bullying, dating, and other challenges unique to autistic teenage girls.
If she wins the prize this week she hopes she will receive some funding to donate to charities of her choice.
Education: Sevenoaks school (Kent); Cheltenham Ladies College; Campbell Harris (London); Summer academic programmes including at Cambridge University; Perimeter Institute for Theoretical Physics (Canada); Stanford University (California).
Public life: 2020-present: United Nations Young Leader for the SDGs; 2018-present: founder Neurodiversity Celebration Week: 2016-present, founder Quantum Leap Mentoring: 2017-18: member Diana Award National Anti-bullying Youth Board.
Awards: Numerous awards including the international children’s peace prize, finalist 2020; Shaw Trust 2020 Disability Power 100; 2020 Special Needs Jungle awards, person of the year; 2019 European diversity awards, campaigner of the year.
Interests: Physics, maths, politics, music, reading and card counting.
Castellon, who has ADHD, dyslexia and dyspraxia as well as autism, set up the mentoring forum in 2016 when she was just 13, after struggling to find age-appropriate support. It has since grown to reach 1,533 subscribers globally and Castellon supports up to 10 children a week via email, as well as parents seeking advice.
“The new [national] lockdown measures are causing lot of anxiety for people like me,” she says. “It’s difficult to wake up one morning and be told you can’t leave your house or go to school.”
Others who contact her have received abuse for not wearing masks on public transport even though those with autism are exempt because face coverings can trigger anxiety.
As well as mentoring, Castellon is also a campaigner for children’s rights. In November 2018 the teenager launched Neurodiversity Celebration Week. The campaign encourages schools and universities to celebrate the talents of children with learning differences. More than 580,000 students from 850 learning institutes around the world take part.
Now her efforts have been recognised as one of three finalists to be considered for the prestigious international children’s peace prize.
Castellon always sensed she was different from other children. “I was an old soul as a kid, I had no patience for make-believe and playing,” she recalls. “Other kids wanted to run around and play games, which stressed me out because of my sensory processing disorder [SPD].”
For Castellon everything is brighter and louder and touch is amplified.
“As I got older some social issues I was having become more noticeable. I found it hard to maintain friendships and was bullied and ostracised.”
It wasn’t until she was 12 that Castellon got a diagnosis, following a spell of extreme anxiety. “I could hear the electricity in the walls and my own heartbeat,” she remembers. “It got to the point where I couldn’t go outside and my mother took me to the doctor. Looking back, I’m shocked it wasn’t flagged earlier.”
Castellon thought the diagnosis would make her life easier, but it didn’t. “There was a moment when I thought I would be understood and accepted but nothing changed.” She continued to be bullied and unsupported by teachers at school. She moved school 11 times in search of one that would not only accept her for who she was but that would sufficiently challenge her as an academically gifted student.
"The government needs to prioritise addressing the “obscenely long” autism diagnostic assessment waiting times, she insists.
Castellon also finds the representation of autism in film and media unhelpful.
Not only is female representation lacking but autistic characters are commonly played by neurotypical actors
Growing up, much of the advice for autistic girls was written by male academics in their 40s, claims Castellon. It drove her to write The Spectrum Girl’s Survival Guide: How to Grow up Awesome and Autistic, published earlier this year. It covers bullying, dating, and other challenges unique to autistic teenage girls.
If she wins the prize this week she hopes she will receive some funding to donate to charities of her choice.
Education: Sevenoaks school (Kent); Cheltenham Ladies College; Campbell Harris (London); Summer academic programmes including at Cambridge University; Perimeter Institute for Theoretical Physics (Canada); Stanford University (California).
Public life: 2020-present: United Nations Young Leader for the SDGs; 2018-present: founder Neurodiversity Celebration Week: 2016-present, founder Quantum Leap Mentoring: 2017-18: member Diana Award National Anti-bullying Youth Board.
Awards: Numerous awards including the international children’s peace prize, finalist 2020; Shaw Trust 2020 Disability Power 100; 2020 Special Needs Jungle awards, person of the year; 2019 European diversity awards, campaigner of the year.
Interests: Physics, maths, politics, music, reading and card counting.
Her book has a forward by Temple Grandin
_________________
“Self Acceptance is a process not a performance”
“You are autistic enough. And you always have been”
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
