Self-help and shul-going - the Jewish way to tackle autism
Jewish parents of children suffering from the debilitating neural disorder rely on their local communities for the help the medical establishment is unable to give them. But the strictly Orthodox take a different approach
Joshua Harris (centre, with friends) has been severely autistic all his life. His family receive valuable support from neighbours in Manchester
'I have a memory of Josh, aged three, at home one day lying on the floor rolling himself in the carpet. Our second baby was screaming and I was just sitting there crying."
Joshua Harris, now aged 21, has severe autism. He cannot speak. He has obsessive and unusual habits and he requires full-time care. At the age of 10, he had the IQ of a two-year-old. For his mother Carole, a retired GP from Manchester, coping with his condition would have been even more traumatic had it not been for the help she received from her neighbours in the Jewish area of Broughton Park.
She first suspected her first-born might be suffering from autism - the neural disorder that impairs social interaction and communication - when he was 17 months old and his speech began to regress. Joshua became increasingly antisocial and could not relate to his peers, he would only eat in his buggy and would watch the washing machine for hours, he would insist his mother would wear a particular shirt and was obsessed with his father's tie.
"His speech had been precocious but it gradually stopped developing until he didn't speak at all," his mother recalls. "My knowledge of autism was nil at the time. Autism was barely discussed during my training and GPs never came across it then."
After receiving no "positive advice" from professional bodies, she turned to her local Jewish community. "A neighbour came around and offered to help," she says. "She contacted people to ask if there were any girls or boys who had any free time and could help, and arranged a meeting for us. She organised a rota of volunteers and they came lovingly and willingly and accepted all the strange things we asked them to do."
Jewish rituals create a huge sense of security
After attending specialist and mainstream schools abroad and in the UK, Josh now studies at the Lubavitch Yeshivah in Salford, with help from his two full-time assistants trained in facilitated communication, a form of typing Joshua uses to express himself. The method is so successful that Joshua has been able to set up his own website (www.joshuasplanet.co.uk).
"When he started to communicate, we realised, lo and behold, he is very bright," Dr Harris says.
According to Angela Duce, head of adult services at Norwood, the children and families charity, attitudes towards autism within the Jewish community have dramatically changed over the years. Whereas families used to send relatives with autism away to residential homes, better education and understanding of the disability has meant more can remain in their own homes. Norwood now has one residential home that specialises in autism, the Tager Centre, in Berkshire with 14 residents. The charity's "supported living model" helps families whose autistic members are still living at home.
Duce has observed differences in how Jewish families deal. "Jewish families are involved far more if they have autistic relatives," she says. "They are more motivated to help and support. For many, it's no longer acceptable to put somebody away and make decisions for them."
But she notes that, in her experience, people from more Orthodox backgrounds frequently prefer the residential solution to the 'supported living' model. "There is a sort of protective feeling, not wanting to expose their family members to the harshness of living in their community. There is also concern over hate crime and bullying if they stay at home," she says.
Beverley Jacobson, chief executive of Kisharon, a special needs charity and school in Golders Green, in London, points out that Jewish ritual has a beneficial role to play in treating autism sufferers. "The structure of the religion itself has a very powerful positive effect on children with autism," she says. "The rituals create a huge sense of security around them."
Kisharon day school has 27 pupils aged between five and 19, and six nursery children. It also provides services to 60 adults. About 25 per cent are autistic to varying degrees. "It's a challenge for us because we have a whole spectrum of people with disabilities but we try to recognise their different needs and integrate them into mixed groups, which is a positive experience too," says Dr Jacobson.
Debby Elly learned that her twins, Bobby and Alec, were autistic four years ago when they were two. Like Carole Harris, she was disappointed by the help offered by medical professionals.
"Like most people, I had seen the film Rain Man and had a basic understanding of autism," she
says. "But everything that came through the door was uninspiring." So in 2008, she set up a quarterly magazine with speech therapist Tori Houghton for parents of autistic children. Describing it as a "positive parenting magazine", Elly says that nothing like it existed before. "There are magazines but not specifically helping parents, giving them practical, uplifting advice," she says. Launched in Stockport and Manchester, AuKids now has a circulation of 1,000 nationally.
A member of the Menorah Reform Synagogue in Sharston, in south Manchester, Elly says her family has been helped by the local community's "inclusive atmosphere".
"The rabbi asked us what they could do to help," she says. "It can be difficult when children don't fit in, but the congregation are very easy-going when the children make noises in the middle of a service. I would like Bobby and Alec to have barmitzvahs and the shul assured me they would accommodate this.
"Autism is so misunderstood," Elly adds. "If you're experiencing a world in a different way you'll behave in a different way. We need to include them rather than cut them out and they can often contribute unique gifts."
Last year the Judith Trust, a disabilities charity, launched a campaign to encourage synagogues and other communal organisations to include people with autism and learning disabilities. The campaign was based on research the charity commissioned to learn what it meant to be Jewish to people with learning disabilities and their families.
Pam Vallance, policy manager at the Judith Trust, says: "Inclusion is a massive issue for people with autism within the Jewish community. It can mean they cannot participate in cultural life, or have difficulty understanding the content of a sermon or problems studying for bar- and batmitzvahs. These are all important parts of communal life and these people have a right to access those activities.
"Our campaign seeks to get Jewish organisations to reflect on how or if they are welcoming those with autism and other disabilities and what can be done to help them participate in a meaningful manner."
And for Dr Harris, it is this inclusive attitude that makes the difference. "The community have been tremendously supportive," she says.
"I met an Irish-Catholic woman who had a son with autism. She said that when she gets home and her child makes strange noises, her neighbours pull their children off the street away from him. When I get home with Josh and he makes strange noises, people throw open their windows and shout: 'Hey, Josh is home'."
Coping with my life as an autistic adult
My name is Joshua Harris and I am 21 years old. I live at home with my family and learn in yeshivah.
Life can be extremely frustrating for people who cannot communicate effectively. I found the first 19 years of my life without speech really tough because I was not able to access what I wanted. It also caused people to doubt my intelligence, which made me feel worthless. I was introduced to a machine called the Lightwriter when I was 13. I type into it and it vocalises for me. It is slow but effective.
Two years ago a speech therapist from Australia taught me a therapy called Prompt, and this has changed my life forever. I am now able to use a wide range of words in the correct context and as a result my quality of life has improved substantially.
I have big problems with my sensory system. Some things I do can look very weird because of this. I lose feeling in my hands and then I flap them together and bite them to regain feeling. I sometimes lose focus because I find it hard to process too much information at once. At times I make strange noises, but what it is important for people to know is that none of these points reflect who I am inside.
It can be exhausting having to continuously prove to others that you have a brain and real emotions and it makes me very sad when people talk down to me and underestimate me. I just want to be seen in an equal way. As I am not independent I have to rely on my friends and family for stability and security. They need to know what I want in life and help me to fulfil those aspirations. This can be very scary because my parents can only get older. My brother and sister have their own lives and my own personal assistants can't be with me forever. I try not to think too much about this because it's not in my control.
It is very hard to experience real friendship. One reason for this is that my autism affects the way I interact socially. It really hurts seeing friends move in and out of my life too quickly. I would love to grow with them.
My aim is to eventually live independently but I will need the correct support as well as having my family involved at all times.
The community should be educated about autism so that they will understand me and others like me and include us socially.