It’s not something that any one of us want to think about, but I recently talked about this across social media, and hundreds of parents of children on the autistic spectrum shared their thoughts and worries. One autistic adult shared that her mother worried about this thought and sadly died now her sister is the person that looks out for her on a weekly basis.
I have two sons on the autism spectrum now aged 29 and 26. My eldest has a diagnosis of Asperger’s syndrome and my youngest is profoundly affected by his autism, a significant sensory processing condition and nocturnal epilepsy. This is something I always have at the back of my mind when I am working from day to day raising awareness and acceptance.
A report by Fitzroy shows that families are deeply concerned about the long-term future for their sons and daughters, including the question of responsibility for their welfare after the main family carers have died.
‘One in three parents says that they fear for the future of their children after they are gone. After a lifetime of struggle to secure appropriate care for their loved ones, and a constant vigil to protect them from abuse and neglect, they have lost trust in the system to provide adequate safeguards when they are no longer there to oversee the process. One parent says: “It is like a ship heading for an iceberg and nothing happening to change its course.”‘
For now, I am trying to plug every hole so that when I am dead and gone my sons will be looked after with the best path hopefully I have helped create for them.
Dr Anna Kennedy OBE is an educator who has worked to provide an improved education and other facilities for children with autism spectrum disorders.