I haven’t felt like blogging lately. I’m busy. Emma is no longer going to school and we have a number of exciting projects we’re working on, in addition to the ones she is working on solo. We are covering all the subjects any school would cover, only we are doing it according to what Emma is most interested in. So instead of saying, this month we will read _________, we say, “Here are some books I thought might be interesting, do any of these interest you?” And then if they don’t we keep looking, asking and seeing what clicks.
At the moment we are reading Shakespeare’s Romeo and Juliet (thank you K.), we’ll begin pre-algebra in another month or so, are studying ancient civilizations beginning with our earliest known ancestor (thank you Mom), learning about chemistry (thank you Dr. C), have a variety of craft projects, writing projects, music projects, and that doesn’t even begin to cover all the other things that come up in any given day.
In addition to all of that, German (Emma’s very specific and insistent request) is coming along nicely though we are very much beginners, so all you German speakers, please do not start commenting in German and expect a response, unless it’s something like – Meine Tochter trinkt Apfelsaft, aber ich will Wasser, bitte. Yeah, I just wrote that…. like a BOSS! You have no idea how proud I am of that sentence, particularly as two months ago I couldn’t have put more than three of those words together. And even though this was Emma’s idea, I’m (obviously) enjoying myself enormously. (Oh you have no idea!)
But the point of this post was not to itemize the topics we are learning about or to show off my German (!), but instead was to say, yes, we are busy and so that makes blogging more difficult to get to, but the bigger point, the point I was thinking of when I sat down to write this evening, is this: I don’t have to blog if I don’t want to. I can just stop blogging. In fact, if I felt like it, I could say – I don’t feel like doing this anymore and that would be the end of it. But my daughter doesn’t get to just stop and walk away from her neurology and how that is perceived by the majority of people out there.
So here I am, because this is about countering all the negativity that abounds when it comes to autism. There is stigma and prejudice and yes, oppression and people saying and doing all kinds of things to Autistic people that are horrifying and appalling and the vast majority of people in this world see nothing wrong with that. We have to stand up and say, no. This isn’t right. People are being beaten down, literally, beaten, threatened, murdered and it’s not okay. It isn’t. Our children are growing up in a world where autism is synonymous with all kinds of awful ideas and beliefs that hurt them.
Autistic people are being shouted down, ignored, trampled on, gas-lighted, abused, treated with contempt and some fear for their lives. Non-speaking Autistic people are routinely treated as though they are incapable of thought and if they type, they are faced with suspicion, doubt and ridicule. Speaking Autistic people are presumed incapable of understanding others, or believed to be using their neurology to get away with something. If they speak out in anger they are told they are being unreasonable and that this is yet another example of their neurology. I’ve seen non autistic people accuse Autistic people of being unable to understand the nuances of an argument because they didn’t like what the Autistic person said. One woman wrote to an Autistic friend, “Oh, you’re autistic, now I understand why you said that awful thing about that poor woman.” Seriously. WTF?
The intolerance some non-autistic people show those who are not like them is staggering and horrifying. The prejudice that is out in the world is rampant and everywhere. So as busy as I am, as much as I don’t feel like blogging these days, my daughter doesn’t get to take the day off. She doesn’t get to say – I don’t feel like being treated badly or differently or as though I’m not capable of understanding. I don’t really feel like hearing what that rude person just said about me right in front of me. She has no choice. And that’s what this post is about. Some of us have a choice and others do not.
My daughter does not.
It’s awesome that you’re spreading a message of acceptance for autistic people. More folks need to jump on this bandwagon. I like it. It’s much nicer than the shock, bleach, and chelate bandwagon.
Ariane and Emma-
From my view point you have just launched something much MORE fundamental and important.
Research dollars are spent on pharmaceuticals and DNA research, not “therapies”.
You, with Emma’s guidance, are INVENTING the most fundamental therapy: you are raising and educating your daughter at her level, with her abilities.
This is a true revolution in BOTH education and autism therapy, and I, personally, feel as if the whole world is watching with baited breath.
You are the writers; I can’t even put into words the power and important of the trail the two of you are blazing, but it gives me chills to think of it. My heart aches that I drove my son to his daily public torture for 10 years, and I am so proud and grateful to you for making the decision you did.
And I have the benefit of getting to watch you discover your daughter’s great gifts (a dizzying dismay I also live). We sometimes inherent the best of our parents, a gift that is then sharpened and refocussed by autism. The results are sometimes the great achievements of mankind.
There are many great writers, advocates, parents and bloggers in our community. There are many Ari’s, but only one Ariane, and your particular voice is quite unique and important.
So put Emma and family first. But do not ever underestimate your own power to change the world.
Thank you so much!
Emma is so lucky. You both are. I’m glad you have each other, and that you keep speaking out like this.
Emma, You have won my heart for so very many reasons. First, l wish to say that you are a Shining Star. ! You are Brilliant!!..l have lived with Bi polar ll disorder all my life. I am sixty two years old…. Sometimes things are very difficult because people do not have the capacity to understand. I am very , very proud of my daughters who both exceeded to very high levels of college degrees. Your writing, at your age of eleven?…well l must say…astounds me, to say the very least. So all l can say is this…Believe in yourself, Emma ! You have it All !!!!!!
Thanks Derry (Ariane here) Appreciate the kind words.
Your beam of light is so important and appreciated! Things are getting brighter with each celebratory voice.
Unrelated: the latest radiolab podcast might be interesting to you and emma? it’s about autism. Hey, podcasts in general might be a fun source of “does this interest you?” topics!
Ooh… send a link!
http://www.radiolab.org/story/juicervose/ – it’s kind of a downer, so be warned, but it is interesting. I preferred the one about talking to dolphins 😉 http://www.radiolab.org/story/hello/
I have not written anything online in a while now because I am too busy with my fictions. I want to say to Derry above that I am envious of Emma because when Emma does write on here she demonstrates an ability that is basically me at a similar age with proper support and care.
Ariane describes my kind in the above. I get angry. I get to the point where all it would take to induce violence is the right/wrong combination of words. My parental units legitimately fear for their lives when the subject of autism comes up and I am in the same room.
I doubt that Emma will get to see an adulthood without at least some experience of the reasons for this. But we can still hold out hope that she can get to my age without her grokking how I see what I call the normie population (this is distinct from neurotypical, bear in mind). But given that Emma was a year old when I was diagnosed and now I constantly make references to “iron price” when talking about autism civil rights…
I wish we humans were more advanced, more tolerant, less driven by fear… I wish you’d been given the love, support, and encouragement that every human on this earth deserves.
No, she doesn’t. But she does have a choice in how she responds and she responds with so much grace. The both of you are bringing so much awareness to the beauty, intelligence, and empathy that Autistic beings have. Thank you!
Thanks so much Debkukreja
Keep up the good work. I happy to hear Emma is doing well in the home schooling
She is flourishing!
The two of you are doing wonderful things and in the process you are strengthening the rest of us 😉
Thanks so much Marie.
prayers to all of those who are being hurt, daily. Love to all Autistics all over the world and hope for the world to become accepting of who they are. Prayers for the awakening of a generation. So glad to have you and Emma here to shed this light for others to see.
Aw… thanks Bird.
You just wrote that Whole Thing “like a BOSS.”
I know for me sometimes the writing helps me as a mother and sometimes i just – can’t.
I know too that your writing speaks to so many and spreads such truth.
You do what YOU need to do for your darling daughter and we will all be here at your convenience.
Love right back.
This is what I wish people who understand about me having CP as well “I didn’t choose to be this way please don’t penalize me for it.”
Yeah, it’s odd how so many seem to forget that fact, right?
It is true that you can stop blogging at any time if you don’t feel like it.
Call me selfish but I do hope you never will stop. This blog has opened my eyes on so many things concerning Autism, and I have none in my relatives.
This is why I cannot help but wish for your writing to continue for a long time.
Thank you for taking the time to share with us, and thank you so much for opening my eyes!
Thanks for the encouragement. It is appreciated.
So many of us love your writing and love hearing about Emma’s achievements. Here’s another vote for forging on!
That’s so nice of you! Thank you.
As I have said before, I love this blog. It is inspiring and educational at so many levels. I am a professional in the field of autism, with extensive education, certifications and experience. However, I do not have the capability of providing Rapid Prompting or Facilitated Communication in my position (those are considered to be not legitimate interventions). I work with kid doing Floortime, and I see that they are capable of so much….but I have such limited time with them. I do get to work with some families who choose me, and that is great. But otherwise the parents of the kids I see are often not well educated, do not see the capability in their kids, and do not pursue anything outside of schooling. Your blog makes me try to do more with the kids!
Thank you so much. One day (I hope) typing to communicate will be a given and not considered strange or illegitimate.
It’s really tough, not just for parents, but for all non autistics, to see beyond the constant stream of misinformation about autism. Most schools, therapies and interventions are working from a false premise as well.