The other day a parent felt I was being judgmental because of my Demanding Speech post. I felt terrible that was her take away from the post, but I also understood why she felt that way. One walks a fine line when criticizing current therapies or suggesting we do things differently while not sounding preachy or judgmental to those who feel the very thing I’m criticizing has helped their child. And I have to admit here that in writing the previous sentence I initially wrote, “suggesting we do things better for the sake of our kids…” which, yeah… that sounds judgmental and yet…
So how do we protest, how do we talk about things, things we feel outrage about, things we believe are wrong without sounding like all those “autism experts” I so often criticize here on this very blog?
And the only answer I have, for myself and anyone else, is – stay open to other points of view, be willing to listen and learn. But how do I speak my truth while understanding that what I say may upset some? I don’t think it’s possible and I’m okay with that. Not everyone is going to agree with me. That’s okay. I don’t agree with the vast majority! But what I won’t do is stop talking about all of this. I won’t. And while I talk about all of this, people comment and email and reach out and give me feedback and many times after reading what they’ve written I rethink my position. I change, I grow, I learn. All of this is a process, and by that very fact it means that what I believe, is in a state of constant flux, there’s movement, more to learn, more to understand.
I know what it feels like to feel another person is judging me. It isn’t a great feeling. And it doesn’t help me understand the other person’s point of view and it definitely doesn’t make me feel particularly inclined to stick around to hear what else they might have to say. In fact, when I believe someone is judging me, my visceral response is to retreat or fight back. But, if I can let go of that initial desire to flee, I often learn, even if it is a lesson in verifying what I already thought. The most important thing I can do is not preach, not convince, not judge, but speak honestly about my experience. If that resonates with others, great, if it makes people angry, so be it, if it alienates some, okay, but this blog is about our experience, mine, Emma’s and Richard’s. I don’t speak for anyone but myself. I don’t pretend to know what Emma’s experience is, even when she writes about it here. The best I can do is interpret it, respond to her words, talk about what it means to me and ask more questions, but that’s it. The same goes for my husband, I don’t and cannot speak for him.
And in the end, that’s all any of us can do. I hold deep convictions about much of what I see going on with autism. I object to most of what is commonly believed to be the “truth”. Yet I also know I continue to get things wrong. I have tremendous humility when it comes to all of this. I am constantly learning. People, usually Autistic people, are generous enough to share with me their experience of things and it changes my thinking. I listen. I revise. I tweak my constantly shifting beliefs. I ask questions. I continue to learn more, I realize how I haven’t gone far enough in my thinking. I dig deeper.
But when I am in a room where a teenage boy is being watched like he is a prisoner while eating his lunch, pelted with questions he cannot easily answer by speaking, his favorite food, in this case, rice, withheld until he finishes some other food, again in this particular case fresh, cut up fruit, overseen by someone else, whose only real power is that they can speak easily while the boy cannot, spoken to with barely concealed impatience and irritation, I’ve got a problem with that. When I see a group of people being treated as unequal, with less respect simply because their neurology is in the minority, I feel physically ill. When someone who cannot communicate through spoken language is treated as incompetent I feel sick. When people speak to my daughter or speak about her, often in front of her, with exasperation, irritation, barely disguised annoyance, I feel enraged. When a human being is treated with condescension by another human being simply because that person is deemed less intelligent regardless of whether this is true or not, I am motivated to speak out.
This is personal, it isn’t just some issue I feel strongly about. Do I feel judgmental? Sometimes, but more often I feel sad.
What follows are a few photos that make me happy…
Henry and I laughing as Emma tries to convince Henry that the water isn’t freezing cold
My beautiful friend Ibby. Photo taken by Emma
One of my favorite photos of Emma as a baby, because even then her personality shines!
Larry Bissonette takes Emma’s photograph
Emma's Hope Book 
Well said! Discourse is about presenting a side and then others responding, through which both learn. We cannot engage in discourse – learn – without voicing a position as a starting place and then listening respectfully as others voice their positions. Of course this requires open minds and open hearts. Thank you for taking that starting position and opening the discourse.
Chutzpah…Aspergers Experts Who Actually Have Aspergers. http://raggette.blogspot.com/2014/03/chutzpahaspergers-experts-who-actually.html This is just fun…to me…not funny, but fun. The AUDACITY of these young men to call themselves “experts”. Then they go on to say, that most experts and parents are doing exactly the wrong thing. I have a lot to learn. I’m on my third or fourth viewing.
Interesting…I have been saying these things since 1994–but no one wanted to hear me. Is this guy able to support himself by being a consultant? I never got anywhere. I went back to school and the universities don’t even know this stuff and it is so basic to me. Unfortunately all programs for autism are intertwined with the educational requirements–I have been saying for more than 20 years, you need to first have the physical foundation, only then can the mental function correcly and the social become entwined.
Well said. Well done. Bravo!
You have been doing and continue to do an outstanding job with that high-wire act of balancing one’s opinions and convictions with the desire to be inclusive and refrain from preachiness. It’s a tough job, and as you said, honesty, openness and willingness are great guideposts to follow.
Blunt is my middle name. Richard B. Long. I care what others think of me, but even so, I don’t mind ruffling feathers when expressing my heartfelt convictions and opinions, especially about matters as serious as this, not just to our family but to the world.
You’re a lot “nicer” than me, but no one can make an omelet without breaking a few eggs.
I don’t know if what I’m going to share with you will make sense. It might even be just as judgy. But have you ever considered that your approach to changing how parents do things maybe wrong. That your approach to parents are actually the things you wouldn’t do with your child. You talk a lot about respecting how your daughter thinks and feels. But when you approach parents do you apply those same thoughts to them. See what your trying to change is how someone else chooses to parent their child. You want them to live the way you live. Think the way you think. Do as you do. And I think many are like this in so many ways. What you actually don’t like about some peoples approaches to ASD children you may actually be doing to the parents.
It’s actually is judgmental to criticize another persons method constantly. We have different ideas of how to show people our choices and how to convince them that they may want to try the approach we are taking. I kinda believe that every mom tries their best. Makes choices for their family. I don’t believe you get anyone to change by critism or passing judgment. It’s kinda like this. If you wanted to get your daughter to learn something would you get her to learn that thing by critiquing her. Bugging her. Nagging her. Jumping all over her. Telling her she’s constantly wrong, saying things that made her feel bad or pushing at her. If every day you spent your day judging your child would she be happy? If every day was a day spent with you critique her every move would she be happy? Well that’s what some people think is the best way to teach people. They think by pressing constantly their thoughts on the person they will learn and bend to their will. When they don’t bend they press more. Judge more. I’m sorry but…. When you really want to teach something I believe you teach by example. You show them. You just do it.
You give your daughter so much respect. You are a mother who teaches her daughter well. You are a mother who wants to respect how your child learns and wants to do things. You up lift your daughter so well. Your approaches you use with your daughter are so less of judgment that I would say you non judgmental of your daughter even if I only know you from what you write. But you are not extending this mercy, respect or way of teaching to others.
We moms need to think about the other mother as a person. Not an opponent It’s easy to lose sight of the person we are talking to. Ever see a school yard fight. It looks like a group of kids circling two kids fighting. People cheering as they fight. Bloggers fight like all the time. They spend their time and voice to write posts that are ment to provoke argument. Then people write in choosing to be their opponent. As they fight and argue people cheer. When the dust settles every one goes their seprate ways. But what is learned. What is accomplished. Well you get a blog that caused a great stir. Or tons of hits. I guess that’s important. But what did you want to change?
If you took a different approach I bet you would teach more. Things I love is the things you write about Emma’s day to day joys of life. I love hearing how she’s learning and growing. I love when you make it about you. Your family. Your way of being. Your joy, your laughter, your sadness, your triumph. I love hearing the ins and outs of the new approaches you take to growth and development. It’s when your in this focus I choose to attend more. I no longer am interested In wasting my time watching or attending the school yard fight around autism. I seek the joy of family more then ever. The joys of autism. When it’s about your family and your way it’s a post that reaches more. Touches hearts more. It radiates with love. Respect. People who think differently get currious about what your doing. When it’s post after post of arguments and critism it’s only great for the people who like and want to be like that. In this world we are never short of critics. We are short of non judgmental loving caring people. You will change the world by showing the positives of living your life your way. Keep that.
Hi, I don’t know your name, but mine’s Ibby. I know Ariane very well, and she really doesn’t actually want other people to be just like her. And I think what you’re saying makes a lot of potential theoretical sense, when it has to do with people in a situation of doing strategic persuasion because they have time and ability to form arguments on purpose and act in particular ways with deliberate intent. But not here. Here it troubles me.
Ariane is a person who is very direct, and very real. It sounds to me like you like her when she is talking about her feelings regarding topics that do not trouble you, but not when she is talking about her feelings regarding topics that do. Her cries of pain when faced with social injustice are not mere schoolyard fights and not to be brushed off, disrespected and minimized, because she is not manipulating, and most especially Ariane is not dehumanizing anyone. She’s crying out in painful emotion, as she often does. Here’s a quote I picked rapidly from above:
“When I see a group of people being treated as unequal, with less respect simply because their neurology is in the minority, I feel physically ill. When someone who cannot communicate through spoken language is treated as incompetent I feel sick. When people speak to my daughter or speak about her, often in front of her, with exasperation, irritation, barely disguised annoyance, I feel enraged.”
Three feelings described in rapid succession. Here Ariane Zurcher is living as she always lives, and narrating as she always narrates: feelings-led, with heart and integrity. I believe she does invite people to think and talk with her about the heartfelt journeys in her life and thought, but indeed she is not a very good manipulator, and I am endlessly grateful for this simple fact about her.
Love,
Ib
I love you, Ibby. I agree with everything you said about Ariane but I couldn’t have found the right words the way you did. I felt so protective toward Ariane, I couldn’t find words like yours, with compassion and seeing all sides. You are beautiful, Ibby. I am so grateful to know you and Ariane and Richard and Emma and all the friends.
So much lovehugs to you love love love! Love, Ib
Oh Ib, I do read your tiny little grace note just as I read Emma’s hope book. I think you may miss understand how I feel. But I’m no writer like you are. That is where I am not good. So you guys must live with my lack of ability to communicate with written language to your level of expertise. Any way. If I can make my self better clear. I don’t actually care if she truly writes blog posts about her views on therapy. Kinda is meaningless to me directly. I never really make it matter. I just figured if she keeps getting these posts where mothers are telling her that they are feeling judged she might want to actually think differently on how to approach them. Maybe use the same ways she teaches her daughter.
I admire how she teaches her daughter. But I actually think that how people teach parents is ineffective. I think that there is room for great improvement on how to teach parents. You see teaching and getting kudos from the people who practice the same practices as you is easy. It’s like converting the converted or preaching to the choir. She can be greatly effective and very eloquent just as you are. But here’s the thing you can convert your selves all you want. What you want to change are the non converted. Just figured I would mention that it can be very effective to parents if she spends time showing her life. Showing them that they want to do it because it’s better. Ok maybe I’m still not saying it right.
If the person your trying to get to do something different is so offended by your approach then maybe you should change your approach. Doesn’t she and everyone else ask this of the people who practice therapy. I’m not saying she is offending me directly. Or that she has been disrespectful to anyone. Hey I’m not the one who wrote her feeling offended and judged. And she did write a post about the comment. I’m just commenting on the fact that she might want to listen to how the offended person feels and change her tactic on reaching that audience. Hey I know it doesn’t bring in the hits. I mean everyone shows up for the argumentative posts. That’s the real great stuff bloggers love to dig their teeth in to. But it’s effectiveness in actually changing how someone parents is lacking. How many parents say things like until you and me argued I never saw it like that. But I bet more parents would go until I read about how awesome your daughter and your relationship was I never saw it like that. Hey I mean she can keep trying to convert the converted. It’s always great to see a full church right. But the best souls are won by going out into the mission field. Making a difference by showing. And I could have written a kudos. You do nothing wrong your the best effective writer post. Make everyone feel great you know. Never say that there’s another way to teach anything. I could just be like oh never mind that the audience your trying so desperately to reach is getting further from being reached. I could say you can’t win em all. Or you win some you loose some. I mean everyone loves that. But I think the main reason she writes the posts she writes is to change the world for at least one more person on the spectrum then her daughter. I think the main goal is to change the person who isn’t thinking of autism the way she does. I think that’s what people have been trying to do. But what actually happens is that the goal is less achieved. I know what I’m saying may not change a thing. But maybe you just never know. Parents might just start blogging from a different perspective. They may just reach the un reachable they may just teach the people their most trying to teach. If there is no shortage of bloggers blogging feel good posts on how to live the wrong way then wouldn’t it be great if we got more glimpses on how to live the right way. How positive it can be. What that family dynamic actually looks like. What that model looks like. So many write about their way without showing. Some people are visual learners. She writes many posts like this. I just think she could write some more and more often.
“If the person your trying to get to do something different is so offended by your approach then maybe you should change your approach.”
Maybe yes, maybe no. Maybe one needs to be more gentle with those who are offended. Or maybe they just need to get offended.
When Reverend MLK offended people, should he have changed his approach? Maybe. He might not have been killed if he stopped offending people. Maybe civil rights would still have happened. Or maybe people needed to be offended.
One day, I watched parents force their daughter to look in their eyes. She screamed and struggled and they held her head and body and forced her until she went limp with trauma and blankly stared at their faces. They said good girl. They said let’s get ice cream now. She was limp and drained and didn’t look to care much about ice cream.
This was on the sidewalk in front of the therapy center. A doctor told them to do it and they did, right there before getting in their car. I cried for days after I saw it. If someone is offended by me saying that no one should ever do that to their child, that someone needs to be offended. Because I am not going to stop saying that it is torture and wrong to treat a person like that.
Sometimes “I’m offended” really means “shut up about human rights and go sit at your own lunch counter, not ours.”
It’s good to use MLK as an example of a cilvil rights movement. Because at a time where violence was at his highest he chose a different approach. In fact many of his followers chose a different approach on how to reach the very people they wanted to change. In history there has been many activist who have chosen different then him and his followers. They chose the same approach. They got no where. But when the different approach was taken change was brought about. The problem is it never comes quickly. To change the world in peaceful ways takes longer then to take by force. But when you take by force you have changed nothing.
Even your example of a parent forcing their child to look at them was an example of force. They may get the compliance but they have changed nothing really. They may even up the persons need to fight and not comply. You know the uprising. But who taught the parents? How were they shown that this method of teaching was the best way. If you ok the time to teach them or show them that their child could be treated better they might do it. In that situation you actually have no rights. Their the parent. It’s doesn’t mean there being the greatest parent but they are the parent. You need to show them you respect that while offering to teach them differently.
Teaching parents, where to begin. Parents read books, watch stuff, even learn from their parents. The best parent experts make their way of parenting seem right and attractive. They tell them do it my way and you will have happiness and your family will be great. So they do it. The people talking to them are often pleasant in their way of speaking to them and showing them how to parent. in a way that is convincing. If they see they are not getting a big enough audience then they change their tactics to draw a bigger crowd. They will do anything to make their way seem what’s best for your child. they may even use smoke screen and mirrors. They may even pander. They are the one with huge advertising campaigns.
Then there are the people who have a different parenting message. They have something to share. But instead of looking at their audience and drawing them in, they push them away. information on parenting that might count gets left behind. You know some people don’t get that if your going to talk to parents about parenting then you got to see what works in reaching them. What are they watching seeing that’s wrong. What’s being offered to them that’s wrong. How do you counter that with what’s right. You have to get to know the very audience your trying to reach. If your goal is to reach the parent who’s forcing their child to look at them then how do you reach them? What would get them to truly listen to you. That should be your goal. If they are walking away pissed as he’ll with you did you reach them?
Ok I got a quicker better way to say this now. If your way to teach a parent is to fight and argue with them. And another persons way was to be kind and not argue with them. Who do you think the parent is more likely to listen to. It’s about effectively reaching the person your trying to reach.
I don’t do any of what you say because I can’t talk to people who love their children but are hurting them because someone told them to. There is nothing I can do when I see that because I can’t make words with my mouth, I can only come home and write about what I saw.
You say it is not good to say those parents are wrong. You say that saying it is wrong to force your child or treat your child like a thing instead of a person will offend parents and hurt their feelings.
But I never learned the way people tell lies to make people change. I can only tell the truth and hope people listen and when the truth is that ugly, I don’t know a pretty way to say it.
We Autistics are violated every day. We live in a world that hurts us, even when it’s being nice to us. And every day, Autistic people are being treated in cruel ways that are not nice. When the world is so difficult and painful when people are being nice, just imagine how much it hurts us when people treat us like objects or pets or livestock. Stop reading right now and try to imagine it.
If you are able to imagine it, you will begin to understand why saying that people should not speak truth about damaging therapies because it might offend someone who is not Autistic is a very hurtful, offensive, and dismissive thing to say.
My people are being killed because we are different and people have sympathy for our killers because we were “so hard on the whole family.” We are persecuted, hurt, hated, feared, mocked, killed . . . and people like Ariane are heroes to us for daring to speak truth and help protect and defend us and help people be more willing to listen to us.
It makes me angry that people are trying to make Ariane stop telling the truth. I want Ariane to feel strong and loved and safe so she can keep doing her important work of making a better world for her daughter to live in because it helps to make a better world for all of us. Ariane is already so careful and gentle and diplomatic with how she tells truth. To tell her to change what she is doing is to tell her to stop telling truth. To stop saying that we are human. To stop saying that people should presume competence. To stop saying that we should be treated the way others are.
To tell her that telling truth is wrong and hurtful is to say that she should stop being our ally and angel and close her mouth and let us die in silence.
“Ok I got a quicker better way to say this now. If your way to teach a parent is to fight and argue with them. And another persons way was to be kind and not argue with them. Who do you think the parent is more likely to listen to. It’s about effectively reaching the person your trying to reach.”
What? Ariane NEVER fights and argues with people. Ariane is one if the kindest people I know. How can you say those things about her? She doesn’t need to change her style. It is untrue to say she fights with people and I feel like your words are meant to shame her into silence. You say she offends people and should change. But the only thing more gentle than Ariane’s words is empty silence. If you are trying to silence Ariane, you are on the side of hurting people like me because that is what Ariane speaks against: hurting and dehumanizing people. That is the message of love and strength Ariane brings and you want to silence. It is you who should be ashamed.
OK thanks for sticking with me, I see what you mean. My concept of reality is that everyone should be how they really are instead of using tactics, but that might just be because I am so Autistic. 😉 So my natural ways usually are considered fairly kind, I think, but I also don’t believe I have a very large audience. Tell everyone to read me and ask questions for the Tiny Grace Notes blog, because I am very nice! But I also think of this: the only reason it is possible for me to be myself safely is because I have friends who have my back. Some other people see my nice and gentle ways and they think it is a reason to take advantage or ignore or believe I am incompetent. The good news in the world is that it is full of a wide range of different people and all the various people can go to (extending your analogy) all the different churches and mosques and temples and synagogues and coffee houses and monasteries and internet chatrooms about atheism and agnosticism &c. of their choice… and even hop around and choose different ones any time they fancy a change… Also, so, should I call you Fun Mum? Love, Ib PS Thank you SO much for saying I am a good writer. That made my day for a year!
Ha ha I actually don’t have to close my eyes and imagine anything. I live it. I live it every day. I’ve been hunted shamed hurt abused you name it. Shunned. I kinda laugh. We don’t really know each other. My life is actually very different then you think. And my family very different then many others. But I have made a choice on how I’m going to approach others about it and how I’m going to live through it. I think that because I’ve had so many treat me and try to teach me with hostility I try harder to teach others with out. Can’t say I always have been and will be successful. But it’s been a personal choice I’ve had to make. To not really teach the way I was thought or not to treat another person with the same hostility. I choose not to be outraged outwardly when a parent shows me they are doing the very things I know hurt me. Instead I’ve made the choice to show them me. It’s not easy. Sometimes I’m still met with rejection or hostility. But when I still meet them with out the reaction they are trying to provoke they often think more about what I say. Or what I’m about. I guess it’s my way. It’s just different. I find more people listen when I’m showing so I try to show more often. I don’t know if it would be great to say imagine being mistreated by your whole family friends and community but you choosing to treat them kindly every time you see them. Imagine if you always tried even if they are hurtful. I bet you would be able to imagine. Because I bet you would be living it. I bet you would be trying to be merciful to everyone who showed you none. It’s funny when we live it.
I think there is what we call a ‘frame clash’ here, or level-jumping going on. Fun Mum is talking about a type of persuasion theories instead of about Real Ariane and Unstrangemind and I are talking about the person we know and the lives we live, and this means there are two conversations crashing into a wreck on the motorway crunching all the cars. Love, Ib
Now Fun Mum talking about own life so the levels might converge… xx Love, Ib
I think Ib is right completely different thoughts are going on. And no I have never tried to silence anyone. In fact I’ve written her many times telling her to ignore someone being nasty to her. I’m sure she knows that’s not how I feel. I do feel she could try to listen to what ever the person found judgment on. But I actually don’t even know what post she’s talking about. I really think that we could make a bigger difference in how parents get their education. And we need to think more on our approach. Offer the things parents look for. They are getting it offered by people but maybe the wrong ones. It’s just their approach is different. I’m sorry if that’s not the nicest thing to say but why not try to listen to what they said about judgment. I talk to a lot of parents. Their biggest complaint is that they feel judged. They latch on to who ever seems like they are not doing that. So maybe a change of approach might help those parents be reached with the correct information. If you don’t want to change how they are parenting but just want to tell them your point of view well then you might be mission accomplished. But if your goal is to reach the parent and change their way of parenting then maybe listening to them and tailoring your approach but not changing your message might get you what you want.
Sparrow – I will never stop, I promise you this. I won’t. I don’t know how to do the whole – give them what they want, so they can better hear you – thing anyway, but there will be no silencing me.
I love you very much, Sparrow.
Dearest Ib, thank you. You are family. This was my thought last night as Emma said, “Now we have Ibby from Ibbia” which is something she says often. I believe, though of course I could be wrong, that she says this as a way to calm herself as she lists all the various people she used to see (usually therapists, but also doctors) and then says, “now we have…” and then lists people like you and Barb R. and Laura and Soma…
**Smiling so hard I probably look like a Muppet**
Haha! That may be a look that even tops “Lisa”!!
Well, I cheated and read all of the comments that came in after this one, so I have a very different sense of your words, FunMum, than I would have had I read this when it first came in.
When you wrote, “It’s kinda like this. If you wanted to get your daughter to learn something would you get her to learn that thing by critiquing her. Bugging her. Nagging her. Jumping all over her.” I imagined this blog with tiny little legs running around after you, hounding you as you tried to escape it and I kept thinking – doesn’t she realize this blog isn’t required reading? 🙂
But I think I have a better understanding of what you’re saying here…
I will say that as I’ve been blogging for more than four years now, usually five days a week, I have had to block exactly three people in that entire time and the massive majority of comments I’ve received over the years have been kind and respectful even when they’ve disagreed or suggested another idea or opinion. And even those who disagree or feel I should be made aware of something have done so in a way that has not felt like a personal attack, although this one, from you does, I must admit. But I’m guessing this pushed some personal buttons for you.
Even the person who commented that I reference in the beginning of this post and who said she felt judged, did so in a way that I did not take personally, but I understood her to be saying that she wished she didn’t feel judged for some of her decisions by other parents. And as I wrote above, I understand that feeling.
We have been living with our daughter an her autism for a long time. We are always looking for new ideas to help us connect with her. We have tried lots of different things. We tried them because we wanted to help and because that was what was available at the time, and because some other autistic kids actually were reached using these methods. Over the years Most of the things we have tried have been helpful to some degree. When she came to us our daughter only had about five spoken words that she used to communicate. She was seven years old. She had lots of behaviors that were distressing to us. A self biting and scratching child can be scarey especially when they draw blood on their own body. We tried a special school for 4 years. Then I home schooled her for five years, using something that wasn’t ABA but I think might be similar to it. We also used patterning exercises from the Institutes for Human Potential, in Philadelphia. This included teaching sight reading while exercising. One of the exercises was called suspended inverted rotation. Katrina was suspended upside down from a monkey bars type of ladder to stimulate her vestibular system. She had to wear high top sneakers and she learned to tie her own shoes at age eleven due to this exercise. While we did the programing She seemed more aware. She learned to ride a bike.
at the end of five years her spoken vocabulary had increased to 250 words. At present it is much better, but we don’t count her words any more. She went to High school and graduated with a certificate of completion due to being in special Ed Classes the whole time. Her receptive language is way better than her expressive but we can understand each other now, and we can have little conversations. She has a medicaid Autism waiver so now at age 40 she goes out in the community, she does volunteer work, uses the computer at the library to listen to Rap music (her favorite). We did Mozart when she was in home school, but it never caught on really well. She is learning the Mountain Dulcimer, she can weave, and she can knit with some help. We have tried facilitated communication, but Katrina was never independent with it. Lately we are trying some RPM and we are seeing some independent pointing at a letter board and on the computer, but it is still very rudimentary. She is also on the GFCF diet and she takes Anxiousless and L-theonine for anxiety. This is a journey and a process. I don’t think it is ever OK to give up, if there is a possibility of reaching my child and having a more real connection with her. I think Katrina is very competent inside herself, but she still needs one on one supervision for most of her life skills. She is not safe without this supervision. Still, she is a wonderful daughter, and a very good friend. We feel blessed to have her in our family. So about trying other methods, we have tried a lot of them. They did help us reach our daughter. If she ever gets to communicate with RPM we will probably find out how frustrated we made her, but that will still be a joy.
I love the mountain dulcimer! I have a kind of drum called a bodhran that I love to play. Going from the love of rap, she might enjoy that too, because it is really fun to space out to the beat, and once you can do it, it almost does itself, trancelike. Your surname is Irish like this drum. Dear Marie, From my own heart I told Ariane a while ago what Emma can say now in her own way: old frustrations wash off easy in the water of love. Keep on loving. Love, Ib
Thank you Ib. You are so kind and encouraging. I will seriously consider the bodhran, and see if Katrina likes it. She loves drums. Whenever we go to the music store, if the drum set is out, Katrina loves to play with it.
The bodhran seems like a nice inexpensive alternative to a whole drum set. I’ve also thought about bongos, and cajones.
“Old frustrations wash off in the water of love.”
Lovely, and true, as I see my daughter’s joyful face two years after changing our approach.
As my husband’s grandmother always said, hugs make you grow!
Marie – this is such a lovely ode to your daughter.
Thank you. You are inspiring us to keep learning and growing no matter what.
… I’m having a hard time making words come coherently, so I may come back to clarify later.
I think that “judgmental” is a word that is used to try to silence valid criticism a lot of the time. Sometimes, passing negative judgement on a thing isn’t only justified, it is necessary.
I can’t really articulate my point better than that right now, I might come back to it later. Sorry – having a bad making-words-happen-in-a-way-that-will-make-sense-to-others day.
Back to clarify as words are easier today: There is a difference between being critical and being judgemental, and most people seem to hold the point of view that those who criticize in a manner that chafes, or on a point they don’t think is valid, are judgemental rather than critical. Especially if those people are women – sexism is a dimension that can’t be ignored here – fact is that often, a man saying “you need to do better at this” will be seen as critical while a woman will be seen as a nag.
I agree, I have done both of these things myself (taken someone’s criticism of an issue as a personal slap, i.e. judgment) as well as had someone take my objection regarding the way people are being treated (this post was meant as an example of that) as a personal condemnation.
Interesting that you bring up sexism… it is such an ingrained way of thinking and I often do not think of it, but I agree. The word “nag” is never applied to men. Instead they are called, “forceful” or “determined” or perhaps the more derogatory “aggressive,” maybe even “blowhard,” or as you say, “critical” if people are really annoyed with what is being said, but accusations of “nagging” are never directed at men, at least not that I have heard.
Yes, exactly.
And women are called judgemental more than men, I find, too. Even when our criticism is every bit as founded/valid. I find a lot of women have to bend over backwards to avoid being seen as judgemental nags when they have something to speak out about. I can’t bend myself that way, which is part of why offline I usually don’t criticize/speak out as all – it’s Rude and being Rude is like the worst thing ever, apparently.
That part is not all of what I wanted to articulate, but the rest of it is stuff I’m still, for whatever reason, unable to word well. My writing ability is very inconsistent this week. The other part was stuff about how if people are doing very bad things, we have a duty to disapprove and to express that disapproval or else nothing changes. You can express that disapproval in a negative way (i.e. “this is terrible and wrong and here’s why”) or in a positive way (i.e. “here’s a more effective way to do what you want, because the way you’re currently doing it is harmful because reasons”), ymmv. But you do have a duty to express it because otherwise status quo remains.
Apologies that I can’t be more eloquent about it right now. I know I should make that point into a good and well-researched and argued essay, but I can’t right now. Some people have bad hair days. My hair is too short to have bad days, but my words have them in spades.
I have never found your writing judgmental in the slightest. I have learned much from your respectful approach to Emma and to autistic parenting. There are always going to be people who take umbrage to any method of parenting different from their own. Your writing is clear and respectful of all. You aren’t going to reach everyone, you will sometimes make people angry without meaning to. That’s the nature of humanity. I think you reach and uplift far more people than take offense. Please don’t change a thing.
Thank you Lynn!
Ariane, I have been educating those in my autism class using your blog this semester…I don’t know how much teachers are paying attention though. They never commented to me, but the instructor certainly latched on! She thinks your site is fantastic, so that is all that matters. My degree, Masters in Administration, Human Health and Wellness was designed by me to direct programs for disabled, more specifically adults with autism who may have been directed through the justice system or mental health systems, and never learned to deal with their overrun nervous system because they were medicated heavily… I have had web sites since 1999 with educational materials on how to recover…naturally. I am to the point where I will be graduating in August, but I am no better off than I was before (myriad of physical, and years of financial poverty issues, literally no support system because I have to keep moving further down the rabbit hole in order to afford water and electricity)–so I cannot just run out and “get a job”. But thanks to living here (in this low place in the desert) I apparently get enough sunshine? now so I have not had to use the braces or physical supports I’ve had for years, since moving here near Mexico. But I need to work online–having DSL has been a miracle and my lifeline, because I “appear” not too bright and a near 4.0 GPA is something not visible to others. In my thinking, it is always better for me if people cannot see me–well, they also don’t rea what I say or listen, and I don’t know what to do about those.
The next step in my journey was to become employed through the internet, but I found out the phone system here in the rabbit hole won’t connect in from long distance so I couldn’t do the work, nor could I get through the sign up when I applied through ARISE.com. I must take the gamble, and make the move up to a place where I can at least get incoming calls–it will cost me nearly all of my disability income monthly to do so. You see, there really are NO programs out there for PEOPLE LIKE US. We all must devise our own ways still. It would be nice to crate a site that has everything in one place…since Voc Rehab is such a bust.
The book project for my educational non profit Equitable Balance, is to the point of interviewing others who have “recovered” using natural supports–whether it be family or circles of support, herbal, withdrawal from meds (for those of us sent through MH systems), and asking people what were their goals and the steps they outlined to get there. One of my goals has been to become fully self-supporting, and I have not seen that one yet–it will not further my social security retirement at this point, but it will certainly further my self-fulfilling plan.
Aw… Bev, thanks so much. Good luck with all of this.
What I also love about that picture of Larry and Emma is that when I watched “Wretches and Jabberers,” how much Larry and Emma seem to have similar senses of humor. 🙂
Hahaha!! Love that.
LOL true I didn’t notice it before but they do!
Your blog has encouraged and challenged me to look deeper into our therapy choices, to truly listen to my gut and my girl. Thankfully, our experience with ABA has been/ is very different than your accounts from when Emma was a toddler. I am always present, and when my girl want me, she gets me :). However; I am beginning to notice the little things that inherently do not presume Claire competent. She is 4, and I am sure she knows her colors (for example), so why does she need to point to yellow 3x a day? Claire is a very content, compliant, nonverbal girl, so it is hard for me to discern if she is unhappy with our current therapy choices. Advice would be welcome (from Ibby, too, by the way 🙂 ), but I really just wanted to let you know I appreciate your and Emma’s thoughts and shared feelings regarding this journey. Know that a wonderful little blonde girl is benefitting!
Thank you Katie. It sounds like you both are doing wonderfully!
Well said!
I’m so glad I found your blog through Diary, and yes, you’re preaching to the choir since I was already reading Jess – but I don’t think you are being judgemental. To me, that would need to be a more personal judging. Being judgemental about a process, about how our kids are taught/cared for, is necessary for the health and safety of our children (and people in general). If we don’t judge it in some way, it won’t improve or change when it needs to.
The story about the boy and his lunch made me sad and angry, and I think I would react the same way you did. And you need to write about it and call attention to the issues, problems, challenges, preconceptions because if you don’t, things may not be truely SEEN. If they aren’t SEEN, again, they can’t improve.
You and Diary of a Mom have gone through such a journey, and you yourself say that you didn’t realize the inner life of your child. You have a passion for letting others know that there is much more going on, that they need to look beyond the EASY verbal communication and find ways to build bridges to communication, period. This message is SOOOO important for everyone, it would be sorrowful to not try to get it out there whenever possible.
Yes, people who are already leaning this way will be “converted” easily. People who are starting to question might see a situation that pushes them to dig further. People who have never thought about autistic children/people and their rich inner lives and rich and varied communication might be surprised and want to know more. They might get angry and take your words as a personal attack and turn away. Maybe they’ll come back and maybe not.
But the words have to get out there to the people who are willing to read, and think, and step back to re-examine what they perceived to be true. People like the “doctor” from a few posts back will not change their minds, because a new perspective is threatening to them. But the ones who are willing to face the pain of their perspective shifting – like you, Jess, me, and countless others – are going to make things better for others, one person/one experience at a time.
Sorry to post an add on, but Unstrange’s post made me want to give an example of people who receive the kind of info you share with an open mind – my son’s team at school. He’s what would be considered “twice exceptional” and is integrated into 1st grade full time. His IEP goals included eye-contact – until I learned from reading blogs like this that told me it’s hurtful to force it. I took that to heart, and I sent links to the team and asked them to adjust this to general facial referencing/something that is more comfortable for my son. And they did. They didn’t argue or take it personally. They learned. I love my team because they know it’s NOT ABOUT THEM. It’s about my son (and all the other kiddos in their care).
PK – this is so wonderful to hear. It’s really, really wonderful to hear about whole school staffs that are willing to hear other thoughts and do them. Emma’s school is proving to be the same and it is so, so hopeful.
I totally agree.
You can not keep EVERYONE happy. There will be people who do not agree with your views. But that is all it is, your view. We as humans are different, we have different views and different opinions. So keep blogging about your views and your opinions as they are your right.
Personally for me, I only feel judged when I’m not sure I have made the right decision or my decisions do not generally fit the mainstream mould (the difference of autism parenting vs NT parenting- the NT parents being judgemental)
🙂
I agree with you Unstrange Mind. No matter how “gentle” Ariane is, if someone is hearing something that is making them uncomfortable, they will be uncomfortable. Better they feel uncomfortable about doing harm so they STOP doing the harm, then feel NO discomfort and continue to do damage.
I am very tired of the tone policing. Some parents are wonderful. Others can’t stand to hear anything they didn’t think of themselves. I’m going to call them on it, and given that they are hurting their children, I do not have it in me to respect their pwecious feewings. Autistics are being murdered by those who are supposed to love and care for them, and you want me to spend hours on making sure -your- feelings aren’t hurt?
Sometimes being nice gets you nowhere. We can try to be nice first, of course, but I for one am not afraid to get harsh when the time comes. It’s up to the parent to not be cruel and awful, so the time never comes.
Please continue speaking your truth 🙂
“In fact, when I believe someone is judging me, my visceral response is to retreat or fight back. But, if I can let go of that initial desire to flee, I often learn, even if it is a lesson in verifying what I already thought.” (Ariane)
“But the only thing more gentle than Ariane’s words is empty silence.” (Sparrow)
I experience judgment by others, as a constant. I experience that judging as the profile of the other; and as the activity of them profiling me. That judging can affirm me, and it can deny me.
I find myself on a trajectory. Propelled and guided by my sensory and cognitive processing. On that trajectory, an experience of being affirmed by others and being denied by others is had.
Affirming yields vitality and well-being and self-realising. Being denied can be buffered, until and unless it goes so critical that trajectory cannot be sustained.
I repair trajectory in silence (something I have found Sparrow writes about well).
I also protect in silence. When expressing my sensing and thinking would bring the roof down, I have to buffer that sensing and thinking silently.
It’s then not so much choosing between retreating or fighting; more a matter of being strategic about maintaining trajectory.
What I learn is what sees trajectory succeed, and what sees trajectory obstructed and aborted (most of my life has been crash and burn, I have a tendency to go further in expressing what I sense and think, than socialised others are willing to endorse). So its a learning about negotiating environment; and environment which is crucially social.
I’m then finding that, the older I get (and I’m already old), and the more power is exercised by those and that my sensing and thinking offends, the more I have to fall back into authentic silence.
This seems close to what Ariane speaks of when referring to humility and the learning she does.
I have to turn off my self-affirming/fighting process, withhold from reacting to what is negatively judging me. As long as I can so withhold from self-justifying cognitive processing, the validity of what I expressed to see me offend others can be sustained. It’s something like safeguarding-meditation, sinking into (autistic) meta-perspective rather than reacting.
That meta-perspective is autistic, in the sense that I could not persuade anyone who was socially grounded to subscribe to it, or even tolerate my expressing of it.
Sparrow says it better: “It is time to give up the battle and find the cracks through which I can flow to my own freedom. The undifferentiated wad of humanity is too big, too unyielding, too set on destroying those like me. It is better to find a niche no one else wants and sit quietly in a garden of my own making, alone.”
All of this plays out for me in an educational setting. What offends others is what I sense and think: about what autistic children in that setting require of us; and what hurting and harming we do of them by not providing what these children so require. So some equivalent of what Ariane speaks of.
I’m then of the type 1funmum complains of. I am not good at winning over those who deny and oppose me about autistic issues. I am good at holding my ground; good at using the ‘rules’ to argue that the condemnation is without sound foundation. I heal in silence when it all gets too much, and I come back.
Ariane then offers something else. While I hold my foxhole, Ariane offers prospect of community. I work to avoid offence because engendering offence engenders friction which obstructs progress: I’m boxing clever in an asymmetric autistic-social struggle; I’m trying to stay on my feet. Ariane (and Richard, and all the others in Emma’s community of support), are striving for something broader and richer, namely a basis for Emma’s full life.
We’re all different. We’re all doing our bit on the trajectories our sensing and thinking yields.
Judging (evaluating, condemning/approving) is something we are hard-wired to do, and constantly. Offending is something we all do. The human meaning-making arena is crowded, and all the pitches are taken. Securing new arrangements to see better inclusion of those whose trajectory is autistic, means adjusting things on already taken pitches.
Being offended is a life-condition for this autistic constituency. Collective arrangements offend from morning to night. Those who are socially grounded find offence in what those who are autistic spontaneously do.
Offence and offending cannot be the issue. Not offending cannot be the touchstone. Offending is just something that happens as we live collectively.
As always. Nothing I say does justice to the breadth and richness of what Ariane and others are broaching. Just another voice from the gallery.
Dearest Colin, your words are like soothing water. Truly. Thank you for coming here and leaving your beauty and wisdom. I always feel calmer after reading what you’ve written.
And a very astute voice. I always respect what you have to say also. Can you imagine that people used to think people like us couldn’t think? We live in 6 dimensions, managing all of it at once while they are looking in the mirror wondering who they are. LOL.
Oh my goodness, Bev! I just love this – “We live in 6 dimensions, managing all of it at once while they are looking in the mirror wondering who they are.” I will show this to Richard. He will LOVE this comment too!!
I love your posts, Ariane, because I can relate to them so well, and they allow me to unburden myself. I have sometimes worried that I come across as though I have all of the answers, when I don’t. I belong to a support group where many of the moms use ABA, and I have lambasted ABA in the past, in the hopes that these moms might reconsider their approach. I have done this largely online, so when I meet them in person, it now feels awkward. I know these moms, and I know they’re good moms. Many of their children are in mainstream schools, and I think they are using ABA because they want to give their children a fighting chance. Who am I to judge? My child is nonverbal and in a special needs school. He doesn’t have to fight for his social survival. When I consider this, it doesn’t change my feelings about ABA, but it does change my feelings, to a certain extent, about those who practice it. Also, I can’t believe that someone is accusing your approach of being anything other than understanding and empathic–it was your understanding and empathic approach that won me over to your side when I was (at one time) lending my support to Autism Speaks! In fact, (ironically) it’s the approach that those who boycott Autism Speaks use that has put me off joining their cause. It’s a good cause, but I don’t believe that shaming and bullying people is going to win this cause any new converts, so I won’t be affiliated with it. That’s my point of view, and I’m not going to defend it (I’m assuming it won’t be popular). Anyway, Ariane, just keep doing what you do, because your approach helps, and your approach is probably already having a positive ripple effect that you haven’t even realised yet. Keep fighting the good fight!
Thank you so much Merry. Really appreciate the kind words of encouragement.
Hi Merry 🙂 I’m glad you don’t support Autism Speaks. There are a lot of ways to not support it. My mom, for example, is an educational ninja. She’s very gentle and elegant, and goes to stores that have donation stations at the cash register instead of avoiding them. And they say, “Do you want to donate five dollars to Autism Speaks today?” and she says, “Oh I can’t, they are secretly really horrible to Autistic people like my daughter.” And I have never actually seen her do this, but I can just see it, if you know what I mean, because she has a beautiful voice and an expressive way of speaking. So I am not surprised to hear her tell me that this starts up a lot of conversations where people ask her to go into more detail…
Love your mom and I’m thinking now that you inherited her beautiful voice, because second career? Radio talking head… yeah, it’s that beautiful.
Now that’s the way to spread advocacy!
Pingback: Markierungen 07/25/2014 | Snippets