Autism Awareness Centre

I recently returned from running our 4th annual conference in Bournemouth, UK. We partner with a school there called The Linwood School, which is a local school for children with special needs in the district or Local Education Authority (LEA), as they are called in the UK. I am fortunate to have the opportunity to speak with parents and professionals about the UK autism scene and observe firsthand what they do well. I know I am an outsider looking in so my impressions may be somewhat skewed, but I have to say there is so much that I admire about the programs and options that they offer for families.

Let's start with early intervention. There is a program offered by the National Autistic Society (NAS) called the Early Bird Programme which is for parents whose child has received a diagnosis of autism spectrum disorder (ASD) and is pre-school aged (not yet of statutory school age). The programme is designed to support parents in the period between diagnosis and school placement, empowering and helping them to facilitate their child's social communication and appropriate behaviour in their natural environment. It also helps parents to establish good practice in handling their child at an early age, so as to pre-empt the development of inappropriate behaviours. They use PECS, the TEACCH approach and the NAS' approach called SPELL. The programme lasts for three months and combines group training sessions with individual home visits, where video feedback is used to help parents apply what they've learnt.

There is also the National Portage Association with branches in most boroughs throughout the UK. Portage is a home visiting educational service for families of preschool children with additional support needs. The parent and the home visitor create goals around play and personal development, learning, physical development and communication, and participation and inclusion within the day to day life of the family and the wider community.

Sure Start Centres are located throughout the UK as well and have a broader parenting and family support mandate. Based on the US Head Start program, Sure Start Centres offer parenting classses, child care, and additional help and support for children with disabilities. Parents have some options to access support in a variety of settings before their child starts school.

Schools are located with LEA's. Every LEA will have a Special Educational Needs team associated with it which will have behavioral specialists, educational psychologists, speech pathologists, autism specialists, and other disability specialists on the team. Have a look at their guide to see how they work. One thing I really like is the support that parents receive if they disagree with a decision made about their child by the local authority like assessment or program placement. Every LEA also has a Parent Partnership Service which is a statutory service offering information advice and support to parents and caregivers of children and young people with special educational needs (SEN). PPS are also able to put parents in touch with other local and national organisations. Their main role role is to make sure that parents’ views are heard and understood and that these views inform local policy and practice.

Most LEA's will have specialist schools within their district that cater to special needs. Some schools will have an ASD base within them as will mainstream inclusive school. It doesn't cost anything for a child to attend one of these schools. Imagine having this option in Canada. I would love to have my children in a more specialized setting but can't afford the 2 huge tution fees that would total between $12,000 and $14,000 for a private school for children with special needs.

I've seen some wonderful work in the ASD base at the Linwood School. Each classroom has a Smart Board. There is one to one support for a child if it is needed. Parents have the option to pay for a school breakfast and lunch. Lunch costs about $3.00. There is a teacher at the school whose role is to provide students with proper and appropriate technology support. There are soft play rooms, secure outdoor spaces, and the school is secured by a coded entry system so no student can bolt out the door. They even have an indoor swimming pool! There are no tuition fees for parents.

What I think makes the UK education system work better than ours in Canada is education is a national mandate in the UK, not a provincial one. There are huge discrepancies in educational policy and delivery between the provinces as well as differences between rural and urban education. We have no national standards for special education practice. When I travel and work throughout Canada, I see noticeable differences between provinces in level of aide support, teacher training, and educational options for parents and students. Some provinces have a full inclusion mandate. Inclusion is not for every child. I see very high-functioning, intelligent children in the UK in special schools because they can't cope in a mainstream setting.

In Canada, we don't have an advocacy group in place at school boards. When a parent has a concern, then tend to go it alone with the problem. There isn't an organization within the school board like Parent Partnership that will support parents and advocate on their behalf. Many parents here get overwhelmed and give up. It took me 4 months of meetings to get my daughter moved to a more appropriate program. It was an exhausting process and one that I felt quite alone with.

In March 2010, England passed the Adult Autism Strategy. This marked a fundamental change in public services helping adults with autism to live independent lives and find work. The Strategy sets a clear framework for all mainstream services across the public sector to work together for adults with autism. There are also numerous options for adult living situations in the UK. There are also specialist ASD post-secondary educational institutions.

Scotland just passed their Autism Strategy on November 2, 2011. In addition to £10 million in funding to help and support people with autism and their families, announced earlier this year, the Strategy for Autism commits to a further £3.4 million investment. The media reports that the economic situation in the UK is far worse than ours in Canada, yet their government still seems to be able offer support for individuals with ASD.

I think the big difference between Canada and the UK service delivery lies in the fact that UK countries work together nationally and not by small areas like we do. Health and education come together to support individuals with ASD. Countries develop national ASD plans. Denmark has a National Autism Strategy too. While everything isn't perfect and there are many more people vying for services in these heavily populated countries, there still seems to be options that don't cause a huge financial strain on families. I was surprised to learn that teachers can provide respite for families of their students in the UK. It seems to work and strengthens the school/home relationship. Principals aren't moved from school to school either so there is strong continuity at schools through experienced leadership.  

Canada needs to create a national autism strategy if we are to improve service delivery and create more equality between the provinces for health and education. With no national best practices or code of standards for autism services in place, we are lagging behind the European nations.  We are such a vast country with huge distances between our major centres. A national autism strategy would unite us all and move us forward.