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Autism awareness call

CAMPAIGNING FOR CHANGE: Autism advocate Venessa Bobb at a recent event with critically-acclaimed micro sculptor Willard Wigan, who has autism

A MOTHER-OF-THREE from London is using her experiences as a parent to an autistic son to dispel myths about the condition and provide a support network to black and minority ethnic (BAME) communities who may be affected by it.

Venessa Bobb established an organisation called A2ndVoice as a way of reaching out to others with the kind of support she received when dealing with her son’s condition. According to Bobb, a lack of awareness, limited knowledge, cultural stigma and stereotyping, within and outside BAME communities, are preventing children, and their parents, affected by the condition from accessing the help they need. She told The Voice:

“Often when I attend all-party parliamentary meetings on autism, I am the only person of colour there. A lot of the BAME autism groups that have formed are struggling and feel isolated, because despite identifying a need for their services, they are lacking a strong voice to impact lasting change.”

Autism is a life-long condition that affects how a person sees the world, communicates and interacts with others. It can present differently depending on where the child is on the autistic spectrum. According to the National Autistic Society (NAS), 700,000 people in the UK have the condition.

Progress

Bobb campaigns locally, talking to church congregations and hosting community events, and is the Lambeth Branch Officer for NAS. She has also enlisted the help of well-known people in the black community who live with autism, such as the artist Willard Wigan MBE, famed for creating micro-sculptures.

Bobb believes much more cohesive support is needed and is calling for black people in influential positions in society to help raise awareness. She said:

“Although people are more aware of autism compared to, say, a decade ago, the condition isn’t visible and when people have a crisis, there is little support. Sometimes, children with high-functioning autism can be overlooked by authorities because they are on track academically, even though they may have social interaction issues.” She added:

“There are adults living with the condition that can go to work, but still need workplace support when they suffer from stress and mental anxieties. If you are a parent who cannot read or write, or you have an MP that does not know how to access that kind of help, how are you going to get the help you need?”

Communication

Admitting that there is a problem is hard for some African Caribbean parents, and there is a tendency to send their children ‘back home’ in the belief that this will help to discipline their child.

Poor understanding of the condition isn’t just restricted to families. Institutions can miss crucial indicators of the condition in black children and end up labelling them as aggressive, which can lead to exclusion from school, poor grades, and incarceration. The government has already acknowledged there is significant underdiagnosis of autism among BME communities.

Research also indicates that a third of people with autism have been a victim of crime. And those with autism are also overrepresented in prisons. Bobb is keen to highlight these issues in a talk planned for April 2017.

She also wants to highlight how autism impacts single parents and other siblings – something Bobb knows only too well. Her 14-year-old son was non-verbal until he was five years old. She recalled:

“He didn’t talk and didn’t look at you directly, he would spit and kick. I was told that he was just a typical boy and would grow out of it. I was told to smack him. I was constantly being judged by people around me. It wasn’t until I left the church I attended and went to another, where the pastor’s wife had experience of the condition, that I felt that I was being given love and felt confident to speak.

"You need to name it, grieve and speak out without being judged about challenging behaviour.”

To find out more about Bobb’s work, you can email her at: a2ndvoice@gmail.com.

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