Recently I sought some advice from my local autism organisation about whether there were any services that could help my autistic son who is school refusing for the second time.
Unfortunately the family support worker I ended up talking to was not very helpful. She didn’t have sufficient knowledge and rather than refer us to someone more experienced she persisted in discussing how I was managing my son’s behaviour and bringing me up on not being consistent with visual supports. This is not something I wanted to discuss to be honest as I felt we were doing an OK job at managing him. Yes we had got a bit lax on maintaining visual supports mainly because my son had disengaged from them. In any case I didn’t go there to be told off about my parenting but to get specific advice.
At one point I got a bit emotional as a result of talking about my family’s situation but she did not offer any reassurance. Instead she made the comment that she was a single parent of two (non autistic children). Why was this necessary? She was paid to support families not to discuss her own personal situation.
Then I wondered whether she responded like this because I had dragged my husband along with me. Had she made the assumption that because I’m married it is easier? I don’t doubt that single parents caring for disabled children do not have more challenges than I but to assume that I don’t have difficulties at all or that somehow they are less worthy because I have a partner is completely wrong. I know, and I appreciate, how lucky I am to have a husband whose work we can survive on but that still leaves me with the emotional burden of caring for our children. This is not easy particularly when you have one child at home who is barely unable to leave the house and another autistic child who is also struggling with school.
In any case I shouldn’t have to defend my situation and spell out why my life is difficult. It shouldn’t matter whether I’m married or single as to whether someone offers support and advice. Support should be provided impartially and not based on prejudicial attitudes as to who is the worst affected in society. If someone needs help then help should be provided but tailored of course to the family’s situation. As it was, I left with no more information than I started with.
It may seem unfair of me to draw attention to one family support worker when I am sure there are many more who provide a far better service. Unfortunately, in my experience, she isn’t the only one who lacks empathy.
Wherever I go I do not experience compassion or understanding from many of the professionals I meet. They do not seem to understand the impact of autism on family life - the difficulties managing work, what its like not to have a day out or a holiday and how tired we can feel as parents and carers. Of course how can I expect them to truly understand when they haven’t experienced the challenges of raising disabled children.
Nevertheless they could be more careful with the words they use. Having to listen to professionals criticising my parenting or making comments to the effect that I should be grateful that my child can do this and that is unhelpful. It undermines the difficulties my children have, potentially denies them essential support and makes me feel even worse than I already do. Above all it erodes trust between professional and parent.