Child Protection for the Autistic Child - A Resource
EXPERTS BY EXPERIENCE
Children's Services policymakers are making tentative moves towards 'co-production' of services with the families they serve. This piece sets out what is like to be an 'expert by experience' trying to improve support for autistic children in Care.
What is an ‘Expert by Experience’?
‘’You know that some people won’t care no matter how much evidence you give and how much it matters to you. It can be damaging to your own wellbeing when that happens’’ a mother who had lost a son many years earlier, said to me. She continued reflectively "there is something about this area that is profoundly difficult to change.’’ She spoke from a place of experience, having worked with families with children with autism and/or learning disabilities for decades. We talked some more. I eventually said "I believe in change. I’ve seen and lived it. I want to give it a go trying to improve things.’’
That was almost two years ago. So what does ‘‘giving it a go’’ entail? Well, I attend events, mostly aimed at professionals, related to children in care and children with disabilities and always ask the panel a question about what they know about the link between the two. The response is often ''thanks for pointing that out. '' but sometimes a number of contributors chip in with their own unscripted reflections. Sometimes the most that can be achieved is for people to articulate together ''this is an issue that we are finding too'' .
The reception I receive always has the potential to surprise me. For example I recently attended an event where a national charity presented details of children’s self reported difficulties to their telephone helpline. It may have been my imagination but there seemed to be an 'anti-parent vibe' in the room afterwards. I approached a children's charity policy person when the meeting ended, explained my child had entered Care and asked if she knew anything on the subject of neuro-disabilities. She looked incredibly uncomfortable so I thanked her for talking to me and turned away. It would have been good if she had agreed to meet me outside the meeting (my aim) but sometimes you have to accept there will be no progress via one route and try another.
Sometimes it is all just too much. I once started weeping at an event when confronted by a roomful of people who did'ent care or so I thought. ‘’I know that children with neuro-disabilities are in the Care system in significant numbers. Many are locked up yet there are no policies for them. We don’t even have really fundamental information about why they are there, their numbers or what good practice looks like. How can that be right?’’ I quietly sobbed into the microphone. It was horrible. A woman approached me afterwards and explained she was from NHS England. Her views, and to some extent role, coincided with mine so what should have been a dreadful experience had an up-side. You cannot do that every time though – you would be a wreck yourself.
Everyone seems to have an email address ‘out there’ and I make contact with people whose work interests me. A clinician thanked me for 'working on behalf of these children' at one point. Oddly I felt both dismissed and affronted although it was not the clinician's intention to make me feel this way. I don’t work on behalf of these children. I don’t do what I do because I’m paid to or it is my professional area of expertise. I work on behalf of ‘my child, my family and my tribe’. It really is a ‘team thing’ and I don’t expect thanks from a fellow team member.
I'm on a number of parent's panels in different contexts. It is humbling and heartening to meet like-minded people who are doing so much more than I am and have been doing so for a much longer time. We are 'living case studies' but so much more than that. Everyone's story and skillset is different but we are all pulling in the same direction and generally making the case for the value of co-production. Some deliver training and many have third level degrees in subjects related to their own, often harrowing, experiences.
Taking care of yourself emotionally is very important. I went cycling yesterday. It was along the coast where the sea meets the land in a single flat watery line. It was evening and everything was quiet. Sometimes the path between land and sea was submerged and water-meadows and sea became one. It was like cycling on the surface of a mirror except for the swirling currents across the path as the water flowed from land to sea. As I entered the water I could feel my heartbeat change, thudding with fear, but I was not alone and someone had made the unseen path for me.
Sometimes being an 'Expert by Experience' is like that.