The struggle against autism discrimination

Some may feel a sense of outrage knowing such blatant discrimination is still alive and well in the 21st century.

But sadly Jay’s tale is far from unique.

Jay’s son Isaias is one of the estimated 700,000 people living with autism in the UK.

Autism is a lifelong, developmental disability, affecting how a person communicates with and relates to other people, and how they experience the world around them.

“My son is frequently told how gorgeous looking he is, he has two autistic conditions including a rare form of autism, PDA (Pathological Demand Avoidance Syndrome) – he doesn’t look autistic like Rainman. Autism is one of those hidden disabilities because it does not come with a wheelchair or clearly visible signs of a disability,” says Jay from Bexhill.

If a child in a wheelchair was asked to leave a shop because of his disability, there would, understandably, be uproar. But a child screaming at the top of his lungs in the middle of a supermarket because his senses have become overwhelmed and his anxieties have spiralled out of control, may not elicit the same degree of sympathy from passersby.

Jay said: “People do not comprehend that you have got a child who is not misbehaving – his actions are because his senses are overwhelmed. And he has high anxiety and fear of what is coming next with the situation he’s in. Isaias frequently becomes aggressive and violent, because he wants to go home where he feels safe and he tries everything he can to gain control to make you leave.”

On one occasion, Isaias screamed for a solid 45 minutes in a coffee shop when Jay was drinking with a friend.

One customer told her she was contacting social services because she felt Jay was ignoring her child – despite experts recommending parents desensitise autistic children to certain environments and situations by making repeat visits and ignoring controlling behaviour.

But when Jay and Isaias went back the following day, she was refused service by the manager.

Jay said: “I was embarrassed and shocked. It’s discrimination. He’s a disabled child.”

She added: “We were asked to leave one shop in Battle because I hadn’t noticed but Isaias was rearranging a display because he’s obsessed with patterns and symmetry.”

Isaias, as with many other autistic children, doesn’t like other children touching him, pushing past him or grabbing his clothing, which can cause him to lash out at them.

Jay said: “We were in a play centre in Hailsham and a woman came over and told me my little boy was the most horrible little boy she had ever met. Isaias rarely expresses emotion but he has refused to return to that playcentre since in case that woman is there.

“ I only ever go to potentially busy public places at really quiet times and never at weekends or school holidays.”

Hastings dad Darran Blakeley is also no stranger to prejudice. One lady told him his nine-year-old autistic son William should be ‘locked up’.

Autism has little regards for social boundaries, with those who have the condition inadvertently causing offence by speaking the blunt truth.

Darran explained:“If someone is fat, they are fat. He says whatever he wants to anyone he likes. He’s like a Tourette’s sufferer. Except after a few twitches, you can see someone has Tourette’s.

“Because you cannot see it and he blurts out these inappropriate statements, people think he’s just a naughty boy.”

Both Darran and Jay have been threatened with the police or social services after their sons had public meltdowns in supermarkets.

Faced with an irrational ball of fury, they had little choice but to physically restrain them for their own safety.

Darran said: “If that was someone having a heart attack or an epileptic fit, other shoppers would have been moved away. But because he is autistic, they did not listen.”

Darran, who himself has high-functioning autism, added: “It’s all about understanding, awareness and tolerance.”

As well as the public meltdowns, some autistic children are prone to running away from situations that they find highly anxious or stressful.

Family outings to the Hastings Pirate Day and Drusillas have ended in police searches after things became too much for Isaias.

But for every shop or business which ejects a family with an autistic child, there are others who go the extra mile to make families with autistic children feel welcome.

Darran said: “I was on Eastbourne pier and there’s a lady with a gift shop and there were ‘do not touch’ signs everywhere. William likes to touch and he saw these signs and had a meltdown.”

But instead of asking the family to leave, the shop owner got all 10 items William wanted down from the shelves to allow him to touch before calmly handing them back.

And in Darran’s local branch of KFC, a member of staff who knows William by name is always ready with condiments for him to handle to ensure a peaceful meal.

Darran said: “Most of us families do not shop in the normal retail environment because we are fearful of the lack of awareness or being asked to leave.” He added: “It’s very difficult for us to go anywhere or do anything.”

And sadly having an autistic child can also take its toll on personal relationships, leaving parents and carers feeling even more isolated.

Jay said: “Sometimes one of the biggest issues is with your own family understanding and accepting the diagnosis. We are incredibly lucky Isaias was diagnosed at 17 months, I also struggled with the fact it was a lifelong condition, but both his dad and grandparents have had great difficulty accepting the fact that Isaias has a permanent disability.”

She added: “I ostracised myself from my own friends because I was ashamed about my son’s behaviour.”

But of course not all autistic children have the same traits, and many do not exhibit the more extreme behaviours.

Parents like Jay and Darran have found a lifeline in the form of the Bexhill and Hastings Branch of the National Autistic Society.

Darran said: “My life has changed thanks to Sarah (Fletton, branch officer) and the autism group. You are meeting other parents, swapping ideas, from schools to your experiences and healthcare.”

The branch often hires venues for exclusive use of the group – meaning parents and children can relax and enjoy the experience without fear of judgement from the public.

One success story was the NAS cinema club, held at the Electric Palace in Hastings.

Jay said: “Isaias emphatically declared he did not enjoy that film at all – he loved it. And he does not verbalise his emotions on anything.”

She added: “He cannot deal with being in a mainstream cinema, as he doesn’t like the dark, the acoustics of a large venue, sitting with strangers, smells, noises – all of that can stress him out.

“He was an absolute fidget at The Electric Palace, up and down and in and out – but he loved it.”

The NAS Bexhill and Hastings group is self-funding and run by parent volunteers, but is well supported by members of the community, with Property Services South East Ltd, 1066 Bakery and Westfield School among those raising funds in recent months.

Fairlight mum Kelly Hanson has a four-year-old autistic son, Luca, who took part in a sponsored walk to raise money for NAS alongside siblings Lily and Hanson.

Speaking about Luca, Kelly said: “People say ‘how do you cope’ and I don’t know any different. He is what he is. But he has brought so much strength to me and my family. He’s adorable. He brings so much positivity as well.”

Darran says NAS has allowed him to reconnect with his former self: “We can be ourselves and be adults and individuals. Otherwise we are just parents or carers. I felt I had lost a lot of who I am and the group gave it back to me.”

* NAS Bexhill and Hastings Branch offers information and support to families who have a child on the autistic spectrum and related conditions.

The group meets on the first Friday of the month at Kerry’s Wine Bar, Bexhill, from 7.30pm.

The Hastings meeting takes place on the third Friday of the month, 10am-noon, at Cafe Des Arts, in Robertson Street.

The branch also arranges activities during school holidays, hiring venues exclusively, providing an opportunity for children to play in a relaxed environment while families get to meet those in a similar situation.

To find out more, call 07920 254569, email [email protected] or see the Facebook page at National Autistic Society - Bexhill