Autism – the mental condition that affects the way people communicate and form relationships – does not discriminate. I realised this all too keenly after being invited to a fundraising evening by the founder of London-based autism charity A2ndvoice.
The event, organised by Simply Mayfair on 25 January 2017 at Tom’s Kitchen in Chelsea, brought together people from all walks of life that have been touched in some way by the condition. A2ndvoice founder Venessa Bobb launched her charity in May 2012 after her middle child – Nathaniel – was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and autism.
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.
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. 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 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.
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.
- 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/
Dami Benbow is a participation co-ordinator at Ambitious About Autism. He has been working on the myVoice project since the beginning of 2015, which is about engaging young people with autism. www.ambitiousaboutautism.org.uk
- 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.
- Sports Day 2017 – www.disabilitysportscoach.co.uk
- World Autism Awareness Month – Wandsworth Autism Fayre 25 April 2017 contact 07947173958
- World Autism Awareness Week – www.autism.org.uk/waaw
- Publication for parents and professionals – www.autismeye.com
- The Big Sensory Integration Project aimed at supporting children and families of those diagnosed with higher functioning autism – email firstname.lastname@example.org
- A2ndvoice – http://www.a2ndvoice.com
- Cassandra Learning Centre – supporting young people who have experienced domestic violence – www.cassandralearningcentre.org.uk
- Wandsworth Autism Group – a local branch of the National Autistic Society – http://naswandsworth.webeden.co.uk
- Include Me TOO – promotes social justice and equality for all disabled children and young people – www.includemetoo.org.uk