We are family

As an Autism advocate I spend a lot of my time talking to Autistic kids and teens and their parents. I am not a parent myself (unless you count my furry child who says meow) but I do find myself thinning and talking about parenting a lot. While I am always a little cautious to give advice, given I have not raised any (non-cat) children before, I do tend to find parents of Autistic kids are often keen to hear my perspective as an Autistic adult who has a very good memory of what life was like as an Autistic child.

When I started out on my advocacy journey in 2005, I met a few parents whose lack of empathy and understanding for the Autistic child left me amazed and saddened. One example of this was when a woman came up to me with her daughter after a talk I gave. The mum introduced me to the daughter and said she was nineteen. The young woman was evidently quite shy. The mum said loudly ‘my daughter doesn’t have any friends. Why doesn’t my daughter have any friends?’  While I could think of one fairly obvious answer to this question, I just mumbled some response about Autistic social groups.This sort of experience seemed to be more common back then. Autism was often seen as nothing other than a big, sad deficit if and if you had an Autistic child it was a tragedy and you deserved sympathy from everyone. I think it was based in the school of thought that it was OK to say rude, dismissive or downright ableist things too Autistic people because they weren’t properly  human anyway. I’m not saying most parents thought this way, in fact it was probably only a small minority, but those were the attitudes I sometimes found myself coming up against as an Autistic speaker.I was quite anxious when I gave a talk that somebody would have those attitudes as that sort of talk always made me feel angry and sad – not good attributes when speaking to an audience.

Flash forward eleven years to now and things are quite different. While some groups and individuals still describe Autism as a tragedy and Autistic children as being somehow  ‘lost’, most of the families I meet and speak with do not share that view in any way. Often parents of newly-diagnosed Autistic kids go through a very challenging time, worrying what will become of their little person, but I find most parents I meet are more supportive than sad and love their kids as much as a person can love another person.

The other day I visited a family who I have known for a while but whose house I hadn’t ever visited before. The dad works in the private sector and the mum looks after their two kids and does advocacy work. I had met their oldest boy but not the younger one. I was ostensibly vsitiing their kittens – I invited myself over on the premise that I wanted to meet the cats but I wanted to meet the humans too. The older son is an outgoing, enthusiastic lad. He shook my hand a couple of times and told me about things he was interested in – cars mostly. The mum described the younger boy thus: ‘He doesn’t speak like other people do.’  And he didn’t say a lot of words but he was also energetic and engaged and seemed happy. The mum told me the younger boy – who is seven – doesn’t really want affection from anyone other than family, but after not too long he came up and requested a hug from me and sat down and played with my bracelet. I felt so full of love and acceptance from the family, The little man and I sat there in silence with him playing with my bracelet. There was no need for words, we were connecting as two Autistic human beings. I was reminded of a description in Steve Silberman’s wonderful book Neurotribes about an Autism event called Autreat where people were just themselves with no need for pretence or small talk. I reflected on just how very privileged I am to be an Autistic woman at this point in time where we are becoming recognised and respected after countless years of horrific discrimination and mistreatment.

Autism can be hard for a child and their family. While I do not in any way condone the concept that Autism is a tragedy and needs ‘fixing’, I do understand that parents of Autistic kids – particularly newly diagnosed kids – can face challenges and difficulties. Not all of these are because of Autism itself but they are still challenges.   So when I talk to parents and see how much they value their child’s neurodiversity and their own unique personhood I am a happy Jeanette. Of course this should always have been the case, but it hasn’t been. So thank you to parents and family members for your support and love. Autistic kids grow to be Autistic adults and receiving love, support and respect from your family right from the start is a very important way of putting that child on the path to reaching their potential whatever it may be.

PS The kittens were very cuddly



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