One in every 100 children are diagnosed with autism but many parents are facing a battle of inadequate education and services, Health Correspondent Alison Dayani reports.
Frustration seems to be the common link between accidental entrepreneurs Carol Howe and Maria Beard.
Both have a son with autism, both were sick of their children settling for second best and both have that fire, the necessary ‘get up and go’, to make a difference.
Over just two years, Carol, a Balsall Common housewife and her business partner and friend Jacqui Walters-Hutton have set up, expanded and gained Ofsted praise for their brainchild of a school, the Island Project, inspired by Carol’s son David.
And accountant Maria, from Tamworth, has created her own website, tink n stink, showcasing developmental teaching resources for children with autism, Asperger Syndrome, ADHD and ASD inspired by her own journey with son Jordan.
The background to both ventures comes at a time when campaigners and families claim educational needs for children on the autism spectrum are still lagging.
Much of this can be explained by the fact it was not until 1994 that Asperger Syndrome even appeared in medical manuals and autism itself has only been recognised properly since the 1960s.
This year, surveys by the NHS Information Centre found one in every 100 adults in England has autism, identical to the rate in children, but the rate for men was higher than women at 1.8 per cent of people, compared to 0.2 per cent for females.
Mother-of-two Maria, who works by day as an accountant for manufacturing business Foseco, in Tamworth, only thought about setting up her own educational website when she realised the limitations for her eight-year-old Jordan.
It had taken six years to get a definitive diagnosis of Asperger Syndrome and ADHD for Jordan, who goes to Millfield Primary School, in Fazeley, but over that time she has seen how the education system is often too rigid to realise the needs of autistic children.
“I see it as Jordan having learning differences, not difficulties,” says Maria.
“He learns in a different way to what the system expects and doesn’t accommodate. The school curriculum is ‘one size fits all’ and there is a lot of inflexibility to change that.
“Some children learn visually with aids, they often need something to fiddle with and learn through motion and I have found fidget tools to keep their hands busy for that sensory need.
“If you imagine a room of 30 pupils, some will be twiddling their hair or doodling but that fidgeting is part of the learning and teachers who haven’t been trained don’t realise that and think they are disinterested.
“I wanted to get across to other mothers that life for their child doesn’t have to be self-limiting, by having access to the right facilities, products and learning resources.
“Tiny things can make a huge difference, like simple stickers in shoes so a child knows which shoe to put on which foot, or skill games to encourage memory recognition.”
Jordan’s parents realised there was a problem when he was two as his vocabulary was limited, he had daily tantrums, nothing could satisfy him, he was not interested in toys, would not leave the boundaries of the house and would destroy everything around him.
“The waiting list for referral to a specialist for diagnosis can take as long as three years,” adds Maria. “We waited 18 months and Jordan finally got his diagnosis this year, but there is a reluctance to diagnose before the age of six in case it is just late development.
“I know what Jordan needs to learn, things like brightly coloured letters and shapes that he can feel and a structure to his day, but a lot of what is done at schools is on white boards so he doesn’t always take it in.”
Sourcing specialist tools, like fidget toys and autism learning charts, Maria has found there is desperate need among parents.
“There needs to be more training in schools about autism but I don’t think the education system is set up to deal with these children adequately, that’s why parents like me are filling the gaps in their own way, because the system is not consistent enough,” she says.
Jacqui, aged 41, and friend Carol came to the same realisation when chatting about Carol’s ultimate wish to see her ten-year-old son David find an appropriate school rather than be isolated with a tutor at home.
But as no school catered for his specialist needs, that conversation set the wheels in motion for them to create the independent Island Project School.
Going from strength to strength, they moved to larger premises at Diddington Hall, in Meriden.
“We have got a lease on the hall and it is a fantastic building, perfect for our needs, giving us the ability to accept more pupils,” says mother-of-two Carol.
“The school started with three pupils at a former Wacky Warehouse, behind the White Horse pub, in Balsall Common, and was all about a future for David being able to learn and mix with other children. I worried about how we would cope one day when I wasn’t around.
“The school now has six pupils with many more waiting to come, plus we are extending our age range for five years up to 19 years, instead of seven to 12.”
David, who is taught using pictures and is unable to communicate by speaking, was two when doctors diagnosed him with autism and profound communication problems.
The two women invested their own savings along with donations to create The Island Project in 2007 with £50,000 set up costs, gaining praise by Ofsted inspectors within a year for its “outstanding curriculum, personal development of pupils and encouraging ethos”.
“I get phone calls from parents nationwide desperate to find a school like the Island Project and I sympathise with them,” adds Carol.
“This started off as something small and we didn’t know if it would work. It came from there being no suitable school for David, but to think we have managed to build on that and grow so soon shows there is a real need. It has been a learning curve, but thoroughly satisfying.”
* ?Maria Beard’s Tink n Stink website can be found at www.tinknstink.co.uk
* The Island Project can be found at www.theislandproject.co.uk
* Autism West Midlands offers a range of advice at www.autismwestmidlands.org.uk or on 0121 450 7582
* Advocacy for Education Service offers advice to parents on how to get the most appropriate education for their child with autism, and support for parents of children with autism who are appealing to tribunal: 0845 070 4002 or www.autism.org.uk/advocacy
* AFASIC offers advice and information on schools to parents of children and young people who have a speech and language impairment: 0845 355 5577
* IPSEA (Independent Panel for Special Education Advice) is a special needs education helpline: 0800 018 4016