This week we mark World Autism Awareness Week. It is thanks to vital campaigns like this led by the National Autistic Society and Cheryl Gillan MP as Chair of the APPG on Autism, that there is now a growing understanding of what the NAS describes as a lifelong developmental condition.
It is only recently there has been recognition that people on the autistic spectrum have difficulties with communication and social interaction. While we’ve come a long way with public awareness, there’s much to do to ensure that the support that there is there for people with autism and their families fully meets their needs.
We estimate 1,377 people in Camberwell and Peckham are autistic. Taking account of their families, this means autism is part of 5,508 people’s daily life.
The government cutting Southwark Council’s budget by almost half since 2010 means that they’ve had to cut the services they provide.
Parents I met at Cherry Garden and Tuke Special Schools in Peckham this month told me how they struggle as the cuts hit them.
It takes longer for their children to get the diagnosis they need. Which means a delay in getting the necessary support - without which they and their family suffer. One mother told me that the hours of help she gets for her 12 year old child had been cut from 24 to 16. Another mother told me she couldn’t apply for a primary school until her son’s care plan was in place, but this had been delayed so she feared he would miss out on a school place altogether or start the year without the right support. And Tuke School can no longer afford to run their invaluable after-school and summer holiday clubs that parents used to rely on.
I’m full of admiration of how these parents stoically battle for their child with autism and their other children, often struggling through complex systems without support.
Parents have got to be fully included in the key decisions about where their child goes to school and the care and support they get.
For some families care at home proves impossible. As chair of Parliament’s Human Rights Committee I’m leading an inquiry into the Assessment and Treatment Units where some autistic young people are detained. We’ve heard from parents whose children have been sent to units which far from helping them have made them worse. We’ve heard when parents raise concerns they are treated as a nuisance by services. But parents are the people with lifelong commitment to that child so we need to make sure that they can help shape the services that support their family. We’re also shortly hearing from MPs who’ve spoken passionately of their own experience, including Anne-Marie Trevelyan MP and Jonathan Reynolds MP, who have autistic sons.
There is invaluable expertise in our schools, health and council services but we must never forget that parents are the experts and services must be properly funded.