So this is a personal one, I guess all my posts are, what could be more personal than your relationship with your child right? Perhaps your own childhood and how that has shaped you?
Some of you may of read on a post or my Facebook page that I have autistic family members, some are diagnosed, some are not. I know I am neurotypical due to the fact I understand how my family members think but I don’t think like them. It seems as if I may of been a minority of one in our house and not just because I don’t like science fiction and Doctor Who scared the bejezus out of me!
Out of my immediate siblings only my baby brother is diagnosed although others self identify. I am 4 years older than him and as I got older he came pretty much everywhere with me. He will laughingly tell you stories of how I tortured him (ie stopped him running under cars and made him eat]. He could be a handful due to his (at that time) undiagnosed autism and I did not understand or recognise autism or always know how to deal with his seemingly erratic behaviour, not least as I was still a child myself. He was however the apple of my eye, we were very close and still are.
I don’t want to go in to the ins and outs of all that happened to him due to a lack of understanding about autism or being undiagnosed but he ended up in a residential placement much to my horror. I use to visit him there where he was apparently being assessed but it was little more than a holding pen for ‘difficult’ children really. They never really came up with any answers but in his early twenties my brother was finally diagnosed with Asperger’s syndrome.
To me it made sense but not so to everyone in the family some of whom denied it and this has caused my brother a great deal of hurt. Today on Facebook my brother wrote this message;
“When I was diagnosed with aspergers many years ago, many people (& family members including my genetic father who still has me blocked on here because of it) refused to believe it. It is nice to see that over time many have come to not only accept that my [my families] autism is real but are also recognising it in themselves and their children. Just because you don’t like the way something sounds or the connotations surrounding it, does not mean you should dismiss it (like my dad did) as it might be important not Just for you but for those around you. Blessing to you all for your open mindedness and acceptance.”
It is hard to explain but this message makes me happy and sad at the same time. Happy because my brother is proud of his autistic identity and pleased that friends and family members have accepted that to a greater or lesser degree and sad because he ever had it denied. He was denied first by the health service and Local Authority who should of picked it up and second by some of his own family and friends. It is an intrinsic part of who he is can not be separated from him, to deny it is to deny him or to say some part of him is not accepted. As you probably picked up on his Facebook post, that has been hugely difficult for him.
No one has the right to deny a person their identity, so diagnoses should be swift and straight forward, acceptance of that diagnoses should be given without question by schools, by families and friends and anyone else for that matter.
I also feel strongly that children should be told of their diagnoses and have it explained to them in a comprehensive way and talked about matter of factly like their hair colour, love of minecraft or fear of the dark, it is just part of them and to withhold them access to that is, in my opinion, stealing their identity. Equally to say that you don’t believe it is to reject part of them.
Autism isn’t good or bad, it just is. Difficulties around it are generally caused by neurotypical societies lack of understanding, acceptance and accommodations for neorodiversity and the seeming need by society for people to be uniform in the way they act or react even though we know that is never the case anyway.
Autistic people do face challenges and that is why they need you, their family, to just accept who, how and what they are, ie Autistic. After all if you don’t, how are your children going to cope going out into the world as autistic adults believing they are broken or wrong or incomplete?
NB This post was written and published with the permission and support of my brother.