Our daughter is autistic and non verbal. She developed meltdowns while in her teens which were frequent and extremely difficult to manage. We sought help from doctors, social workers and teachers.
Despite producing evidence of the problems, we were denied any help until the situation escalated and directly involved police, doctors and social workers. Various professionals made misleading statements, provided incorrect medications and distorted the truth to avoid providing help. For instance, medical conditions like ear infections which were causing her pain so extreme that she banged her head repeatedly were diagnosed as ‘behaviour’ associated with her autism.
On one occasion, a Paediatric Consultant claimed to be unable to watch a video of a meltdown because she had ‘forgotten her glasses’. On another, a Consultant Neurologist denied that an anti-epileptic medication she had prescribed could be exacerbating problems, even though its listed ‘common’ side effects were ‘anxiety and aggression’ and another hospital told us it was unsuitable for people with autism. The result of this was that we ended up unnecessarily spending ten years fighting Social Services in the Court of Protection when everything could have been resolved through a few simple meetings.
We are extremely traumatised by having to negotiate the system for twenty-five years. We experienced extreme stress, sleepless nights and wasted many hours reading and writing court documents. At one Court hearing, the Local Authority produced a witness statement 700 pages long to which we were required to respond.
I wish that people had listened and understood that parents usually have the best interests of their child as a priority, rather than assuming that we are the enemy. If they had been conciliatory and not confrontational, what was already a complicated and stressful situation would not have escalated. They should have listened to the Judge in the Court of Protection who said that the issues should be resolved around a table and not in Court; taking his advice would have saved many wasted hours of their and our time and countless thousands of pounds of public money.
Listen. Be patient and forgiving. Appreciate that the parents of a disabled person are already extremely stressed and make allowances.
Professionals working in social care, medicine and education perhaps don’t understand how stressed parents of disabled people can be or how complicated and difficult their lives are. They need to have it explained to them.
I should add that this is only the negative part of the story – there are heroes too – the GP who would sit in the car with our daughter and try to examine her there, when she refused to come into the surgery. And, occasionally, the nurses in hospitals who would rush to find her somewhere quiet to wait. And some Social Workers are wonderful – it’s just that they tend to leave quickly, broken down by the system. Though in one memorable year, she had eight different social workers – one came to visit for the first time, simply to tell us she was leaving!
