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KILLED: Rodney Larsh

SOME PEOPLE may go their whole lives without ever hearing the word ‘autism’. For others autism, and the challenges that come with it, is part of daily life.

Autism is a lifelong developmental disability that affects how a person communicates and relates to other people. It also affects how they make sense of the world around them. Characteristics are generally divided into three main categories: difficulty with social communication, social interaction and social imagination. Key traits include inability to follow direction, difficulty reading facial expressions and body language, delayed speech, impatience and difficulty understanding jokes, figures of speech or sarcasm.

Last Christmas, as shoppers dashed around for last-minute presents or snuggled up to watch a festive film, the Larsh family was frantically looking for Rodney Larsh – an autistic 20-year-old who had gone missing.

His image flooded social media sites like Twitter and Instagram as Londoners united to help with the urgent search for him as his condition was so severe it rendered him unable to communicate.

Autism is a spectrum condition, so while there are common traits, it affects people in different ways.

Some are able to live relatively independent lives but others on the other end of the spectrum, such as Rodney, may have accompanying learning disabilities and need a lifetime of specialist support.

VULNERABLE

The search for Rodney ended in tragedy - the vulnerable young man was fatally hit by a train on Christmas Eve.

Following his death, a donation page, set up by the handbag company where his sister works, raised £2,000 to fund his funeral.

Across the Atlantic, a four-month search was also underway for autistic teenager Avonte Oquendo who went missing from his New York school on October 4.

The 14-year-old’s disappearance captured the hearts and minds of New Yorkers who joined the family’s search to bring him home. His mother’s voice was even played in the subway just in case the non-verbal teenager would respond.

Again, an entire city was left heartbroken when decomposed body parts found on a beach last week were confirmed to be his.

SEARCH: Avonte Oquendo

The double tragedy has brought the issues of autism to the fore, and there are many who could benefit from a greater understanding of the condition.

Approximately 700,000 people in the UK have autism; with over 100,000 being from black and ethnic minority communities.

Tom Madders, head of campaigns at the National Autistic Society (NAS), said: “More than 100,000 people from black and ethnic minority communities in the UK are thought to have autism, and in common with other families and people living with autism, they experience difficulties in accessing the help and support that they need.”

Vanessa Bobb, founder of A2ndVoice and mother to an autistic child, felt that she did not have any support or help when her son, Nathaniel, was diagnosed with both autism and attention deficit hyperactivity disorder (ADHD) in 2008.

She said: “It was a learning process for me. There wasn’t much support so I had to start from the beginning.”

The mum-of-three from Balham, southwest London, set up A2ndVoice “to make sure that everyone in contact with an autistic child knows that there is help and support”.

With Nathaniel also having ADHD, Bobb, 45, has to cope with his challenging behaviour and his tendency to run off. She explained: “I always get negative comments. Other parents would say to me ‘can’t you control your child?’ But I’m thick-skinned. He just needs different types of discipline to other children.”

She continued: “Autism is an invisible condition. People see the child first, the skin colour, [but] the disability - no one sees.”

A2ndVoice’s drop-in coffee sessions, based in Tooting, are run by adults or parents and carers of children on the autistic spectrum. They also hold workshops and a father’s only group. Bobb said: “We want to connect with more fathers. There needs to be more representation of fathers getting support too.”

The GUBA Foundation is also helping to encourage black communities to discuss autism. In October, they hosted a special conference in south London where families could share their concerns.

“The impassioned testimonials from parents reinforce the need for charities such as the GUBA Foundation in providing the first tools towards knowledge-building and personal empowerment,” the charity's founder and CEO Dentaa said. “Working within the Ghanaian and wider black communities, our aim is to dispel the myths often associated with the condition and encourage carers to know their rights and exercise them.”

DISABILITIES

One man doing all he can to educate others is Orlando Bolt. The west Londoner was diagnosed with Asperger syndrome – a specific type of autism – when he was in his teens.

As a professional dancer, who has appeared in music videos and theatre productions such as Dreamgirls and Fame, Bolt now has to convince others that he is, in fact, autistic.

Once a child who found numeracy and literacy difficult and struggled to string a sentence together, the 27-year-old has started to write a semi autobiography about the “misconceptions of Asperger syndrome and for people to understand how autistic people live.”

NO LIMITS: Orlando Bolt is not held back by his condition

When diagnosed at the age of 14, Bolt found it hard to understand why he felt different to everyone else. He said: “I felt inadequate and isolated. I didn’t know why people didn’t want to be my friend.”

Due to Bolt’s autism, he found it difficult to interact with others and was often in his own world which he called ‘Orlandoland’. He added: “I was really clingy with my parents, so they threw me in at the deep end. They tried to make me go to sleepovers and signed me up to athletics, boy scouts and dance class – where I discovered my love of dance.” 

As part of a project launched in Parliament last year by Labour MP Diane Abbott, NAS has been working with families from BME communities affected by autism to examine the experiences and challenges they face. Its findings will be published in a report later this year.

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SOME AUTISTIC TRAITS

GLOBAL CAUSE: Dentaa, centre, raises awareness of autism in the UK and Ghana through the GUBA Foundation

* May have delayed speech
* Short attention span
* Causes injury to self (biting, banging head and scratching)
* Gross or fine motor skills are developmentally behind peers
* Difficulty waiting for their turn (such as in a line)
* Difficulty understanding jokes, figures of speech or sarcasm
* Difficulty reading facial expressions and body language
* Inappropriate challenging and/or sexualised behaviour
* Sensitivity or lack of sensitivity to sounds, textures (touch), tastes, smells or light
* No fear of danger and others (running out into the road)
* May avoid eye contact
* Resistance or inability to follow direction
* Sudden outbursts or tantrums
* Obsessions or stressed easily
* Seems to ignore their name