As a parent I know what it is like to unconditionally love another human being. I can’t imagine any love stronger than that between parent and child. The feeling of responsibility when they are small and dependent can be overwhelming, yet the rewards make it all worth it. As a parent I see my job as ensuring my children have the best chance of reaching their potential. Their long term happiness is the ultimate goal. I need to be certain they are safe and happy. That is a duty my husband and I accepted when we decided to bring two lives into this world.
At some point though most parents hand over some of this responsibility to other people, perhaps nursery carers, school teachers, babysitters or grandparents. Most parents do it, they are glad of a break and they trust that their kids are happy and safe. Many kids love being in their environments away from their parents. It is a lot for parents to try and raise children all on their own with no support, even when there are two parents.
Imagine a situation where your child cries each morning before nursery. Or they start to hide under the table before school. Imagine hearing worrying talk about ‘enemies’ and ‘attacking’. Noticing signs of anxiety (for them) like rocking, spinning in the playground at school drop off time. Sometimes the child might be able to talk quite specificly about the problem: ‘I don’t like lunchtimes mummy, because the teachers make me go outside and I don’t like wearing my coat. Please can I go to a different school mummy? Do all schools make you wear your coat mummy?’. As a parent you go into school or nursery and sort out the individual problems. Sometimes school will do as you ask, perhaps your child is allowed to stay inside on lunchtimes. Sometimes they disagree with you, ‘but she’s so happy, she’s always the first one to put her coat on and run outside to play’. (That’s what happens when you teach compliance. If she says to her mum her coat bothers her, perhaps just believe it, she has no reason to lie). But at the end of the day sorting out individual problems is not enough. You have to trust that the people who are caring for your child, who are sharing responsibility for your child’s safety and happiness will make good decisions in your absence.
In some cases as problems arise over a period of time, you start to realise that the people who have temporary responsibility for your child’s wellbeing are actually not up to the job. Your trust was misplaced. I am writing about kind, caring people, but it is possible to be well meaning but not have the knowledge or the time to keep an individual child safe and happy. Perhaps the majority of the children in the class are doing ok but for the parent of children who aren’t part of that majority, that fact is unimportant.
For parents of autistic children I have seen situations like this many times. The trust completely breaks down. I don’t just refer to school or nursery settings either. My daughter once said to me that a family member who was babysitting called my son a ‘stupid boy’ when he was upset about going to school. Similar derogatory terms have been used by others who we trusted.
For me trust in this context is not about believing that people will care for my child in exactly the same way that I would. Perhaps they use different strategies, that may be fine. Trust isn’t even about believing the person/people will always tell me the truth. I have recently come to realise that sometimes people intentionally deceive me but they are still worthy of my trust. What is important is being able to trust that the people have the same end goal as you and they have the ability to achieve it. Being well meaning but incompetent is not good enough. Competence but with a goal that completely misaligns with mine is also not acceptable.
In terms of school, I don’t believe their goals are aligned with mine. I don’t consider sitting still at a table to work as important (lying on the floor with the dog beside you works better in our house), wearing the correct uniform (even if it hurts you), participating in all activities even if you hate them and they are stressful. Most of those goals are about trying to maintain order which is important if you want to teach 30 children at once. These goals do not align with mine.
I do believe the teachers we have worked with, care about my child’s safety and happiness but they don’t seem able to spot when there are problems. They have such little knowledge of autism, they mistake signs of anxiety as behavioural problems. So in that respect I don’t trust them to respond appropriately.
So what do you do when the trust breaks down? You have to weigh up the damage being done by the people who are supposed to be helping and consider if the benefits are worth it.
In our case it isn’t worth it. School has done a lot of damage to confidence, self esteem, mental health. The number of people we ask for help with looking after our children becomes smaller and smaller. There are only three people who I trust to look after both of my children outside of the house (my husband and I are two of them!). I have a babysitter who comes to the house to help me but I plan very carefully when she comes and what she does.
The truth is most people have no clue about autism. Worse than no clue. Many have quite firm ideas, but they’ve got it all wrong. This makes them dangerous. We get used to the eye rolls, the comments and judgements. As time passes we see the progress our children are making. It’s not fair that we are doing it all on our own, but if we don’t trust anybody else to do a good enough job what choice do we have?