The old saying ‘Mother knows best’ refers to the maternal instinct and wisdom we develop through parenting our offspring, through our relationships and through our own experience. It is often the wisest course to take note of our mum’s advice as they are usually right! But somehow his does not seem to happen when trying to advocate for your child with a hidden disability. Suddenly I no longer know best, in fact, it seems I know nothing about my child. I am referring in the main to my own experience of battling for the needs of my autistic children. First there is the battle to convince someone that they need to see a paediatrician, this can be particularly difficult if you have a child who is able to ‘mask’ their difficulties well. Then there is the ongoing battle around assessments and diagnosis. Then comes the war between you and education. Finding the right setting, making sure there is an EHCP in place, educating the educators who are going to teach and support your child. The frustrating thing is, that many of the ideas I suggest to those involved with my child seems to fall on deaf ears. Is that just me? Oh yes, they nod, and thank me (a bit like we might do with our children when we are busy carrying out a task!) but they never seem to implement anything I suggest.
Research tells us that parents of children with autism typically know more about autism than many of the professionals they come across. They become ‘professional parents’ (Hall & Graff: 2010) with many going into advocacy and support work with other parents. So why are they not taking notice of the research and using us as a resource?
My own personal experience of this is continuing my own personal development to Masters level and the development of a training and consultancy business. I was driven by the need to understand, support and advocate for my own children. Despite my knowledge and experience, my daughter’s school still chooses to dismiss my suggestions in favour of their own behaviourist techniques (which will not deal with the underlying issue of anxiety). But, hey, what do I know! To them I am just her mum.
However, there does seem to be a more sinister undertone to this. One that concerns me, and that is the increase in allegations of Fabricated Induced Illness (FII) or, as it used to be known, Munchausen by Proxy. This is a very rare form of abuse, where the parent (usually the mother) fabricates symptoms of illness in their child to gain attention. The incidence of this, taken from a study in 1996 was 0.5 per 100,000, shockingly a further study in 1999 shows that the figure had risen to 89 per 100,000 which is a huge increase. Anecdotally, I am hearing of more and more cases of FII within the Autism community, with many parents being accused of fabricating signs and symptoms of autism in their child.
I worked in safeguarding for 12 years and I understand the need for caution, however, most parents I have met and worked with have genuine concerns about their child. In all that time, I only came across one case of FII. When I reflect back on my own journey with my son I realise that I too was viewed with some suspicion, with one professional telling me that she felt sorry for my son because of all the assessments I was putting him through and that there was nothing wrong with him. This made me feel awful, but I knew, my maternal instinct was telling me that something wasn’t right. The child they saw in school was not the kind, intelligent, beautiful boy I had at home. My instinct was right. He was eventually diagnosed with Sensory Integration Dysfunction, Dyspraxia, Dyslexia and High Functioning Autism. In the right setting and with the right support he thrived.
So, is it now a case of the ‘the State knows best’? I don’t think so, we know our children best, trust your instincts. Continue to challenge, continue to battle; because our children need us. The irony is that today I have just received the Educational Psychologist report on my daughter which gives a list of suggestions to school – all of which I had already suggested! I suspect they may at least implement some of them now.
Hall, H & Graff C. (2010) Parenting Challenges in Families of Children with Autism: A Pilot Study