Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.
In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression ( bipolar ) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.
How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.
In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.
My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?
The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.
Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.
My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.
People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.
By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.
Oh that makes me so bloody mad!!
If I'd seen that I would have blocked the woman concerned and told her to go back to you and your partner, Kev, and apologise. If she refused I would have told her outright that she was "a bigoted little witch who needs the check what year it is on the calendar! It's 2010, not 1950!"
Nice reminder, Kev. I did a page on my new blog on the general subject if you're interested.
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You wrote - "My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up."
Absolutely correct. Families of autism affected individuals are counting on a little charity and grace with regard to how their loved ones are received in public.
Even if the woman you stood down seemed at ease with her behavior while in your presence, I am pretty sure she lost sleep over HER behavior...being so judgmental and not having complete knowledge with regard to what she was witnessing. I have had some battles on my own daughter's behalf - in similar circumstance.
The woman was a jerk... and her response was not specific to ASD. When faced with that sort of behaviour my response is fully dependent on what I had for breakfast, whether I slept well the night before, etc... raising my extra-ordinary children on a military base led to us constantly faving this sort of thing - and ultimately led to a forced discharge for my husband. And that was not only autism ("can't you control that kid") but also my oldest, with paraplegia ("soldiers will be reminded that they could face paraplegia if wounded")
All in all, this crap is also part of neurodiversity. But, I'd like to see the word "retarded" remain in active use: social retardation is a horrible affliction!
Great post, Kev. I am sorry you and your family had to face such bigoted bullcrap. In my opinion, it doesn't even need to be explained that someone is autistici in order to explain the behavior, since that is none of a stranger's business. If a child is disruptive and the parents are doing something "wrong" about it, in your opinion, stop and think rather than judge, indeed.