London fundraiser boosts platform for autism awareness
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Venessa Bobb founder of A2ndvoice
© Anthony Ayakwah
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As with many parents before her, Bobb struggled to find adequate information on the condition or support. She resorted to forming A2ndvoice as a way of helping other carers bridge the gap in meeting these needs and is now chair of the National Autistic Society's Lambeth Autism Group. Her event was an eye-opener for me because it highlighted just how much more understanding, awareness and support is still required today.
What I found particularly telling was that despite there being a diverse range of speakers sharing their stories during the event, they all experienced similar frustrations and prejudices purely because autism is still so poorly understood within the health and education systems, and wider society. Political campaigner and former Reuters journalist Sophie Walker, who leads the Women’s Equality Party, recounted some of her challenges during the event about raising her autistic child. And although Winston McKenzie, of the English Democrats, did not share his experiences of being a father to a son with autism, he signalled his support by attending the event.
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| Sophie Walker flanked my Miss Guyana winners © A2ndvoice |
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Winston McKenzie supporting the autism
fundraising event and receiving his raffle
prize © MisBeee Writes
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According to the most recent global figures from the US Centers
for Disease Control and Prevention, about 1% of the world’s 7.3 billion population
in 2014 was on the autism spectrum. Autism
is often called the hidden disability[1]
because it is not always obvious that people have the condition, and there is no clear-cut reason as to why it manifests - although experts believe it is linked to
genetic and environmental factors. This uncertainty and the fact that autism,
Asperger syndrome and other diagnostic profiles under the autism umbrella
can manifest differently depending on the individual, have implications on how
the public understand the condition.
Most compelling during the fundraising event was Dami Benbow’s journey as someone living with Asperger syndrome. He was practically written off as a useful member of society growing up – often being excluded from school and, like Bobb's son, was diagnosed with only ADHD initially. There is increasing research that suggests that ADHD may mask autism and result in delayed diagnosis (PubMed - Miodovnik, a et al Pediatrics). In Benbow's case, his autism spectrum diagnosis did not come until he was 14 years old. But he remains a living example that people on the autism spectrum must have a voice. He now has a degree under his belt, is active in politics and works for the charity Ambitious about Autism as a participation coordinator.
Most compelling during the fundraising event was Dami Benbow’s journey as someone living with Asperger syndrome. He was practically written off as a useful member of society growing up – often being excluded from school and, like Bobb's son, was diagnosed with only ADHD initially. There is increasing research that suggests that ADHD may mask autism and result in delayed diagnosis (PubMed - Miodovnik, a et al Pediatrics). In Benbow's case, his autism spectrum diagnosis did not come until he was 14 years old. But he remains a living example that people on the autism spectrum must have a voice. He now has a degree under his belt, is active in politics and works for the charity Ambitious about Autism as a participation coordinator.
Check out a snapshot of his story here:
For me, the main message to come from the event is that
autism is not someone else’s problem. It is all of ours. You may have friends or colleagues that
have the condition that you are not aware of. There is often an assumption that
people with autism are not in work. But that is a falsehood. You may know people who care for those with
the condition but are not aware of the often lonely struggle they face. Having
to support a child or adult with the condition, particularly when they are not
diagnosed or cannot access the right support, can be a mental and physical
strain on the family and carers.
Bobb touched on her experience of domestic violence and said that although she is a fierce campaigner on the issue of autism, she is still fighting her own battles as a mum to an autistic son. She flagged up the lack of understanding that still plagues the African and Asian communities when it comes to autism, and also the dangers of grooming, sexual violence and exposure to criminality that can adversely affect this vulnerable community. A little part of her story follows Benbow’s here.
Out of these challenging experiences, Bobb and others have
created some good and I wanted to end this blog by listing some of the organisations and events that aim to provide essential support to communities across the UK and further afield.
Please check them out and share with those that may stand to benefit from them.Bobb touched on her experience of domestic violence and said that although she is a fierce campaigner on the issue of autism, she is still fighting her own battles as a mum to an autistic son. She flagged up the lack of understanding that still plagues the African and Asian communities when it comes to autism, and also the dangers of grooming, sexual violence and exposure to criminality that can adversely affect this vulnerable community. A little part of her story follows Benbow’s here.
Autism support
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Ali Golding is a developmental dance movement
specialist and uses these skills to offer therapy to people on the autism
spectrum. She is founder and creative director of the Movement Works
Organisation - http://www.movementworks.org/ |
(L-R) Education & Training Consultant Jayne Kafui Ashiagbor,
Elizabeth Kwarteng Founder & CEO of A2iDyslexia and
Movement Works Organisation Founder Ali Golding © A2ndvoice
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Orlando Bolt is a personal trainer at Virgin
Active UK, singer and professional dancer who has performed at the London 2012 Paralympic
Opening Ceremony. He has Asperger syndrome and is a support worker at the
National Autistic Society.
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Simply Mayfair Founder Jennifer Campbell
with singer Orlando Bolt © A2ndvoice
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World Autism Awareness Month – Wandsworth Autism
Fayre 25 April 2017 contact 07947173958
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The Big Sensory Integration Project aimed at
supporting children and families of those diagnosed with higher functioning
autism – email contactus@sentalk.org
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A2ndvoice – www.a2ndvoice.com
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Cassandra Learning Centre – supporting young
people who have experienced domestic violence - www.cassandralearningcentre.org.uk
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(L-R) Dami Benbow, Andrea of Cassandra Learning Centre and
Grace Alexander, founder of Star Initiative Children © A2ndvoice
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Wandsworth Autism Group – a local branch of the
National Autistic Society – http://naswandsworth.webeden.co.uk
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Include Me TOO – promotes social justice and
equality for all disabled children and young people – www.includemetoo.org.uk
For more stories like these check out
and my piece in the Voice newspaper Autism Awareness Call
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Please be aware that you may not reproduce, republish, modify or commercially exploit this content without our prior written consent.
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