Finishing up my thinking aloud about #autismfestival17 today…with the little points that aren’t so little like…
Autistic daughter, daughter with autism, neurodivergent or just daughter – In my ignorance I have used them interchangeably. I should have known better. I have friends who are transgender and gender fluid. I know the importance of self-identification. And I know that there is never one correct way. Each person has the right to choose how they describe themselves and how they wish others to do so too.
The answer is to ASK. Always ask the person how they wish to be referred to. So one of the first things I did when I got home was talk to PanKwake about her feelings on the word ‘autistic’. She was quite adamant that she did not mind that term. She is autistic and PROUD.
But that is not the end of it. I must remember that she is eleven and I have been a big influence upon her life so far. But that will change over the years. So it is possible that as she grows her wishes will change so it is important I ask again every now and then. Not make a huge deal out of it…she hates that. Just ask. Always ask.
So if you see me refer to PanKwake as my autistic daughter…that is HER choice. Please respect it…and if you prefer person with autism or neurodivergent or just PanKwake then that is alright too.
High-functioning, verbal, non-verbal – It is also bull sh^t and labelling people based upon your prejudices. It is also a divider in the autistic/neurodivergent community. At least among parents.
Jamie and Lion was an excellent example of how people’s perceptions/prejudices can limit not just them but unfortunately him…and PanKwake. We usually are on the receiving end of this one when it comes to her Maclaren Major buggy. If I had a pound for every time that someone had said…You’re a big girl. What do you need a buggy for? We could go on holiday. And if I had a pound for those looks…wow…
But the truth is that buggy is the difference between isolation and an active life for PanKwake. I got her first one when she was six or seven (second hand because none of the ‘experts’ would fund one). I bought it because PanKwake loved going to the park about a quarter of a mile from our London flat. She hopped, skipped, jumped and ran all the way there. Then she played happily for hours…and hours…and sometimes hours.
When it was time to go though…my legs hurt, I can’t walk. And all my begging and pleading in the world could not move her. I had injured my neck a couple of years before so carrying her piggy back which was my only choice was causing problems to the point that I dreaded and even tried to dissuade her from park trips.
With that buggy though…she has freedom! Yes, it still is not easy for me. Pushing her up hill as she gets bigger is hard. And yes, we are limited to a certain buggy radiance…rarely taking cabs, busses or trains beyond that safety-zone. But still there is loads to do in that zone…and she can when SHE wants venture beyond it…like today when we take a cab to home ed gymnastics.
It is sad and wrong that people judge Jamie and PanKwake based upon such superficial things…accommodations that make their lives easier and actually increase their potentials for other great things. Hopefully over time with education that will change.
But we all do it…in little ways. I did it that day when I spoke with one of the speakers…and did not get the ‘immediate’ response I expected…which leads me onto a very practical application….
Allow more time for processing information – Not only did I totally step in it then with the speaker…but Monday I was rattling on AT PanKwake about her room and plans for it. She told me…Leave. You are a Furby. Loud and irritating.
Yes, that one stung. Oh and if you have a problem with my child speaking to me like that…too bad. She is a person too…with rights. That’s just how things work in our #HomeCrazzyHome.
But when I stopped to think about what she said, I realized that because she is that…’high-functioning’…coming to hate that term…even I, her mother, forget that she is autistic. That at its root that means her brain takes in and processes information differently.
And knowing that I need to be more considerate about how and when I present information to PanKwake. Others on the autistic spectrum…oh just people in general.
I am sure that there are other things too. I will watch the videos again…and hope you will too…
But once more a huge THANK YOU to the staff of Swansea Medical School for organizing it. And to the speakers for using their spoons (another thing I learned) to share with people like me. I was not kidding when I said the experience was life-changing…for me…and for my beloved PanKwake. Thank you!!! I look forward to next year.
And here is the autistic girl you helped…