Once again the Victoria Derbyshire programme stepped up to the mark this week, with a segment devoted to the plight of families of children with autism, particularly Pathological Demand Avoidance (PDA). The programme is available for the next month only, but the film included, “I feel really bad when I hurt my mum”, from Noel Phillips, will be available for longer.
The programme explored problems parents have in obtaining a diagnosis of autism / PDA and then the appalling lack of support following a diagnosis. As a result of a lack of help for families, parents may be coping alone with extreme levels of violence on a daily basis, as children ‘meltdown’ when dealing with anxiety of stress. Children may be excluded from school because of their behaviour, further increasing their vulnerability. We are warned that without timely assistance, many young people are on a trajectory to prison.
Parent, Jason Goldsmith spoke of he and his wife being accused of abusing their 13 year old son by Children’s Services after trying to restrain him, and then going on to install CCTV in the home to provide evidence of the violent behaviour and abuse their son was using against them and his younger sister. They were eventually able to obtain help following this. This is not a new issue, but we are reminded that as recently as 40 years ago there was almost no understanding of autism at all; and certainly PDA remains little understood, and often undiagnosed. Member of parliament Anne-Marie Trevelyan, who was present in the studio as a parent of a child with autism, expanded on the importance of the Autism Act 2009, which has meant that there is greater awareness; and the government is to make mandatory, in 2019, training in the understanding of autism for all in the public services. Nevertheless, as was pointed out by another parent present, awareness is of little help if there is no support accompanying it.
Noel Phillips’ film includes clips of interviews with young people themselves, who speak articulately about their own fears and regrets regarding their behaviour. Norman Lamb, former care minister points to the manner in which all public services are failing these families, and “in a way we’re abandoning families to try to cope on their own with extraordinarily complex circumstances.”
Each time I hear the testimony of parents I am overwhelmed with the enormity of what people are dealing with on a daily basis, and often ‘out of sight’ from the majority of the population, who see simply ‘bad behaviour’. Yet there is a sense of gathering momentum as programmes such as this work to bring attention to the issues. Awareness IS increasing. Therapies and support ARE being slowly developed and implemented. Without support, families fear for the mental and physical health of all concerned, and for the future prospects of their children. As a society we cannot continue to abandon so many people.