It’s perfectly natural for parents to worry about their children as they approach adulthood; “Will my kids be happy? Will they be successful? Are they ready to move on in life and achieve their full potential?”

But when your child needs specialist care and support to become a socially included adult, these thoughts are even more meaningful, and the period between childhood and adulthood can be immensely challenging for people with disabilities and their families. In the UK this is known as the ‘Transition Process.’ 

Karl is 23 years old and has autism. Mary is his mother.

“From about the age of 14 Karl really started to act out his frustrations both at school and here at home," Mary said."The school’s concern added to my own worries about his future.”

Mary says that dealing with local government agencies to plan for her son’s future after he left school at 16, was like talking to a “brick wall:" “It was really very difficult to engage Adult Services. This did not happen in any meaningful way until Karl was 16. I had spent months making sure that a Social Worker would attend his review only to be told he ‘might’ be eligible for future services post 19.”

This uncertainty was typical of the transition process that Karl, Mary, and the rest of the family went through.

“I realized pretty early on that coordinating the transition would be down to me. Don’t get me wrong the school did all they could but it seemed almost impossible to speak to the right people at the right time. Once Karl’s assessment was finally complete I thought our problems were over. I was not asking for a place in a residential College. We just wanted Karl to be able to live near the family home with support. But on the day he left school there was no provision identified, much less any funding in place.”

This meant that when he left school, Karl lived at home without any support from Adult Services for nearly eight months. His behavior quickly deteriorated due to the lack of the structure in his days. Mary felt that her son had been forgotten about and abandoned just because he was no longer in school.

“A year before, his sister had left college and gone to Uni. But I felt that Karl had been left on this terrible kind of scrapheap.”

Sadly many parents of autistic children find themselves feeling this way during the transition of their child into adulthood. A recent study by the UK’s National Autistic Society showed that just 17 percent of autistic students graduating from school, have definite plans in place for their future.

But the evidence shows that planning for these transitions is in the best interests of everyone involved: It gives families the reassurance they need about their children’s future (when matched with a funding commitment), and local authorities are better able to make long term strategic plans. But more importantly, it allows young people with autism to carry on receiving support as they enter their adult lives. Without a seamless continuation of support and early planning for a transition into adulthood, vulnerable young like Karl people will inevitably be left without meaningful support on the day the school gates close behind them. 

Family carers often tell of how isolating the experience of losing that structure of the school day and the support of Children’s Services can be. Mary says that it’s important for them to know that “someone is on our side." It wasn’t until someone at the family’s local care center got involved that there was any proper action taken to help Karl.

“Stella (a local carer’s advocate who helped the family) encouraged me to be positive and assertive, to look to the future rather than be stuck in the present. She supported me to file a complaint and helped us to finally get the funding for Karl’s support. I needed to hear those messages at the time –- because to be honest I felt about ready to give up”

Now Karl is happy and settled in an autism support service provided by Autism Care UK. He’s living near the family home with other people his own age. But Mary can’t forget how badly they were treated, and has some advice for other parents of autistic teens.