Remediating the Autism

Fluffy and Dave in Mexico. See Dave's tongue? He's the Micheal Jordon of shuffle board.

I’m not trying to cure my son of his Aspergers but I am trying to get rid of aspects of his Autism that make things difficult for him.

I call it remediating the Autism. It’s the way RDI looks at ASD and it’s the way that makes the most sense to me.

Some have taken issue with that word, remediate. They claim, remediate is the same as fix and so, yes, I AM trying to CURE my son. They say, I can’t profess to accept someone as I simultaneously attempt to change them.

I went down that road, that debate road and I ultimately decided that even though the discussion itself stretched me, my view and intention held firm. I love and accept my son and I’m still trying to remediate his Autism. You can agree with me or be outraged by me or dismiss me all-together. I don’t care. Autism brings with it some pretty major challenges. I’m all for diversity and inclusion and acceptance but I’m also all for teaching and providing and shaping. That’s what parenting is. That’s what our kids deserve.

We’ve been in a holding pattern with our RDI program since the beginning of the year when Fluffy began to hunker down and slip around the illness slope. He gets far too dysregulated by sickness, even the seemingly mild kinds like a winter cold, to have any energy left over for the ‘work’ of therapeutic play. I felt worried about it, worried we’d lose ground, worried about my own ability to engage and guide him without it becoming rote and tense but somewhere along the way, I surrendered to it being a time of floating, floating down the river.

Since we’ve been home from Mexico, the floating has taken on a more lively feeling. I look over at my son and instead of seeing his body still and supine, his head back and eyes closed, I see him on his belly, paddling around, his head up, his eyes focused.

And so we’re back to working on our RDI objectives, back to videotaping every couple of weeks, back to our regular phone conferences with our RDI consultant.

Fluffy’s resistant but you know, he’s always been resistant. He’s a FIGHTER. He’s a BELLOWER. He’s got a very strong mind of his own. I love that. It’s more challenging for me. It’s not like I say, Let’s do so and so and he says, Okay! It’s like he’s a mid-westerner, like he’s from the ‘Show Me’ state and I’m the slick city girl. He needs to be convinced or at least, to feel as if it was his idea, all his idea. He’s on to me in a heartbeat. He can sense right away if I’m playing to the camera, if I’m after a particular THING.

I am, by the way, after a particular thing. I have objectives. I am working on them. My goal is to help him learn these objectives. For example, I want him to care if I like his idea or not. I want him to enjoy when I change the rules in a game, even prefer it. I want him to notice if I’m bored.

It can seem like there are two camps in the community of parents with ASD kids: those who embrace the Autism and those who want to cure the Autism. I don’t believe it’s that simple. I think there is a much wider, more diverse and more complicated set of thoughts, drives, and opinions, perhaps as wide and diverse as the expression of Autism itself. I can’t pretend to know anyone else’s reality but my own. But I will say, it bothers me to hear it broken down into this: my child is in diapers and bangs his head in the corner so he must be fixed while your child talks and uses the potty and knows calculus so he just needs a Microsoft job application.

We all have visions for our kids. You don’t have to fall below a certain criteria to get permission to provide for your kids, to broaden their world. At least, not in my book.

Comments

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[Vicki Forman]

What a dialogue you have opened. As always, you create an honest, loving space where we can all find ourselves, learn what we think and why. Thank you.

[Martijn]

Reading back, my earlier comment misses the (my) point completely. I suppose I can -and should- use my ASD as an excuse here, as well as just being very bad at formulating things.

I definitely don't want to give the impression that my wife -or anyone else- wants to 'cure' me in the literal sense of the word, because that has so many wrong implications, none of which are true. She wants to help me, which is great, because I want help. And I think I need help.

I just wanted to say that it's great to read how you're trying to help Fluffy. Because I too think there is a middle ground between the accept/cure debate; and in my very humble opinion, that middle where 'the right thing' to do lies. And I too can be very resistant and insist I don't want (and, 'of course', need) help - even if I have asked for such help myself. Which is the thing I have to fight against the most.

That's just my two cents (or, probably, just one cent).

[Tammy and Parker]

I loved this post. While Parker doesn't have ASD, but rather Down syndrome and a wide variety of medical issues, we are committed to providing the him with the best of experiences to help him make his way in this world. I don't feel like I am changing him, but helping him be the best person that he can be.

I do the same with my other 5 kids, and myself for that matter.

You've got great insight. Thanks.

[Harvest Mom]

Well, you knew I'd have to comment on this, right?

But first a quick note for John: My DH, who is also on the spectrum, is awesome, but he had some pretty tough times during his childhood and teen years (I'm sure your story is similar). He's done a great job figuring out compensations for his challenges, and of course he continues to develop and grow, just as we all do (and thank goodness that sort of thing is not just restricted to childhood!). But we're both grateful that the struggles that all children, spectrum or not, face during those middle childhood and teen years will not be magnified through the lens of Autism for our son.

In any case, Kyra, rock on! You know that I believe, like you do, that there is a middle ground between the accept/cure debate, where so many of stand shouting "We love them! Hence, we teach them!"

[Martijn]

I don't have much to add to what you and others have already written, just a short message of support. I am a grown up (well, age-wise at least, I'm 28) with Asperger's who feels quite similar to Fluffy in many ways. I am glad you are trying to cure him as you call it, just like I am glad that my wife (Dimitra), is trying to cure me. There's nothing wrong with autism, just like there is nothing wrong with missing one leg - but hey, wouldn't it be better if a one-legged person was helped so that they could actually walk?

Keep up the good thing.

[M~]

Thank you for this post. I so much feel the way you do, but you expessed it so well. I am very tired of the opposing ends of the debate too. I think I fall in the middle. I liked this line you said: "I love and accept my son and I’m still trying to remediate his Autism." That sums up how I feel.

I'm glad to have found your blog. It's bookmarked in my favorites now. :)

[a mommy]

I thank you for saying succinctly what so many of us feel: being different is great, but the world requires certain things in order for our children to have the best possible choices. I want William to be happy. He gets to define that; my job is to make sure as many possible definitions are in reach as I can manage. I love him just the way he is - I still think he needs help to function in the world.

That means modifying the behavior. Furthermore, so much of what my two ASD kids experience in the world seems to hurt them. I can't really imagine wanting to interact with the world on some level, and having it constantly hurt you. I want them to regulate and integrate to the point where that pain goes away or is manageable. Nobody wants their kids to hurt.

Finally, I can speak from experience. I don't think I'm on the spectrum, but I was a "gifted" kid who was mainstreamed. They could have let me run - in some ways it would have been so delicious for me to be permitted to live in the world of my mind. But so much of what life entails isn't remotely about that - it's about getting along with people. Being mainstreamed was best for that.

Everyone, along the way, must learn to deal with others who are different from them and must learn to play by rules that they don't like and perhaps can't intuit. Giving a child that skill is crucial, regardless of the child's wiring.

[kim]

I hate commenting on these ASD-specific posts because I'm not even in the debate, but I have to say that I have never met anyone who has fully, deeply and completely dived in and tried to, in the most non-invasive way, tried to give another person a road map to themselves. That's just what I see from here, I could be wrong, but you are such a connected person, mom and spirit. I have no idea what I'm talking about in these matters, but I do know that you rock.

[kyra]

thank you, john, dimitra, and everyone else who has commented here. i love hearing your thoughts and stories. it's something, this business of parenting. for some reason, it seems to have been shunted to a different room when it comes to raising our ASD kids and i think that's what i take issue with. why? why is it so different?

at the same time, i'm the first to say, hey! look over here! it's different in our house! it takes something more, something extra.

so, i guess i want it both ways.

or maybe it's about that grey area again. there is no black/white, all/nothing.

it's BOTH different and the same in our house. different since fluffy's neurology requires more than the 'average' parenting and the same since all parents need to discover who their child is, what they need, and how to provide it.

i couldn't agree more about the fundamental importantce of self awareness. where does it come from? i dont know. but i think a good part of it comes from tuning in to what happens WITHIN us in the CONTEXT of social situations. it happens there and not in isolation.

dave and i are lucky. fluffy came with loads and loads of self-awareness. i don't take any credit for having taught him. but we do our best to support him as he learns more and more about who he is and finds his way, his 'place' in this wacky world.

and yes, thank you dimitra, for mentioning the way RDI works. it's an inside-out process. it's invitational. and it's also a bit like magic.

there will always be a place for simple rules and guides. but the mind is a powerful place. it's possible to wake up and strengthen the internal supervisory system so that those with ASD can guided as much by natural desire as by what they've learned is right and appropriate.

[Zoely]

Hey K...you know I love you all, your whole family. And you know my kids are NT...and the comments here are right on...I especially like Susan E.'s.
But this is what I think, and it echoes some of the other sentiments here.
Remediatiing is parenting, whether your kids are on the spectrum or NT.
Pippy is NT...should I allow her to ruin her life and call that "accepting her as she is"? I accept that she has opinions and views but when the things she does hurt her, then I must step in. It's my responsibility.
So in that way...I think you can lift the discussion of "remediate or accept" right out of the spectrum and appply it across the board and see how moot it really is.
Furthermore! As an adult with severe depression...should I accept myself, resign myself to eternal blackness, or remediate with meds, exercise, nutrition? Makes the answer obvious, no?

[John Elder Robison]

Well, I probably should not have said "never."

But my same point remains . . . you are going to have more success teaching your son about himself. He can't learn how others feel until he undersatnds himself.

So I think whatever degree of success you have teaching him about others, you would have a still greater degree of success teaching him about himself.

And you are right, I was not diagnosed till I was older. And I can see how I could have learned what I know at an earlier age. I just don't think that age is six, and I still think it starts with self-awareness.

And it's possible I am completely wrong. I try and think back and think of what workd with me, but I don't always know and my own ideas are often wrong, too.

I also think it's very good that you are such a dedicated mom when it comes to teaching and working with him, and you now have the advantage of the internet to share ideas. None of the moms of generations past had that.

Dimitra had a good question - where does self awareness come from? How do we learn it? I don't really know.

[Dimitra]

John, and Kyra, I'm far from an expert on this but I have read Daniel's book and I am married to an Aspergian, and I (and, I think, he too but he'd better speak for himself on this) disagree about the ALWAYS.

I don't think Fluffy will always have problems with those things, just as I don't think somebody with dyslexia will always have trouble reading or that I, who was painfully shy as a 5-year-old and hardly talked to anyone through the first eight years of school, will always find it hard to talk to people. I know it is not exactly the same, but even so, I think people can change and overcome their difficulties.

Perhaps Fluffy will always do it differently, and that's fine! It will probably be a lot harder for him when he is stressed. Perhaps sometimes he will just find he has forgotten how to do it. (I do have some days when I can't remember how to talk to people. It goes away after a while.) All that is fine.

I think your concerns are valid, from your point of view if Fluffy will always have difficulties with certain things, and yet his mom is pushing him to 'learn' how to do them, surely that will only stress him. Except the difference lies, I think, in the fact that RDI doesn't explicitly teach anything. It just give somebody a lot of opportunities where it would be natural for them to just pick up that skill. I think the furthest you go on the 'teaching' front is to model the behaviour you are working on. I think the child is then free to 'learn' it or not 'learn' it, and, as you can find in Kyra's archives, occasionally Fluffy has been saying (with his behaviour) that he wasn't ready to learn something. I think you can also find how he won't even start to cooperate if he can detect that there is an 'objective' in their play... and he sounds like he has an awfully good detector!

Lastly, I think you are very right when you say that "he is never going to understand you until he understands the feelings in himself." I don't think anybody can understand anything until they understand anything until the have an (age-appropriate) understanding of themselves, but where does that understanding of the self come from?

This is an actual question. I think it comes from our senses, but then isn't reading ourselves in the messages our senses give us pretty similar to reading other people?

[Bea]

Welcome back, you seem full of energy, how great!!!!!
Bea

[Kristina]

A parent has a tricky dance: How do we help our child to learn, grow, develop while still keeping, nurturing, preserving that core that shouts "this is who I really am!"? What is quirky and what is DSM criteria?

When I was able to say to myself, even if Charlie does X terrible thing (an SIB), the day is not ruiined---it can still be good, it is still good---it's not that we can only say "we're having a good day" on says when no "bad" behavior occurs, I have come to think. For me, when I learned this, the X terrible things became fewer.

It is a complicated dance.

[drama mama]

Kyra, as always, you speak for my heart.

John, I always enjoy reading what you have to say. I started with a comment for you, but Kyra summed it up so completely.

For now, I believe that I have not even begun to understand what my daughter is capable of. And I'm not short changing her. I'm gonna go for the whole enchilada, and let her let me know what she can and cannot handle, what she likes or dislikes.

And through the extensive work we have already done together, she already does tell me. She can do that now.

Thanks for your interpretations/translations, John. They shed a lot of light.

[kyra]

john, i appreciate your comments. it's always interesting and important for me to hear the Aspergian point of view, at least YOUR point of view, as an adult with Aspergers.

the thing is, unless i'm mistaken, you didn't know you had Aspergers until you were an adult. no one worked with you on any of this sort of stuff when you were a kid. no one helped to form pathways in your brain, helped make connections, jump start a certain kind of development at an earlier age so much of what i am saying here most likely sounds out and out absurd and impossible.

i hear you saying a kind of, oh my! don't do any of that! it won't work and it will drive you both crazy! why? why are you sure it won't work? because my son's brain is so different? because it wouldn't work for you now? because you're sure it wouldn't have made a difference for you when you were a kid?

we are already seeing changes with some of these things. families i know have used RDI to help their kids with this and more. fluffy does care what i think of his idea. he doesn't want me to get bored because he's motivated to be WITH me and so, he is invested in finding things we can do together that we both enjoy. there are some games we play that change and morph as we play them that he enjoys and even initiates.

is it all perfect? of course not. am i shooting for that? no! is it like being with a 'typical' 6 year old? no. do i NEED fluffy to be like a 'typical' 6 year old? well, i don't even know what that means.

i want fluffy to be fluffy. and i believe his brain is capable of far more than the narrow confines of what some adults with ASD and those without, believe is possible for him.

i want for him to become as big as he can be, to connect to other people, develop authentic and meaningful relationships, to learn flexible, discover a deeper empathy, little by little. these are all things i want very much for him.

at the expense of him knowing himself? feeling connected to himself? expressing his unique self? never.

i just don't see it as an either/or thing.

[Mamaroo]

Of course you know I agree with everything you wrote. I parent and remediate things about both my NT and my ASD child.

[John Elder Robison]

Well, you have a number of supporting comments, but I just have to take exception to this part of your original post, based upon my own experience as an Aspregian:

YOU SAID: I am, by the way, after a particular thing. I have objectives. I am working on them. My goal is to help him learn these objectives. For example, I want him to care if I like his idea or not.

I THINK:

I am not sure how you would know if you attained this objective. While it's laudable to "want him to care," realistically, I don't see how you can know. All you can know is whether he learns to reapond in a particular way to your ideas. I'm sure he wants to please you, and he wants you to like him. Any more may be asking too much.

"I want him to enjoy when I change the rules in a game, even prefer it."

Huuuunh????

I am far older than your son, and I still do not enjoy that. I find consistent rules a great comfort. All you will accomplish by working on this will be additional stress for both of you.

Let him learn adaptability gradually, on his own terms.

"I want him to notice if I’m bored."

Why? Once again, I'm far older, and people say I'm pretty function, and I still have trouble with that.

Kyra, some of what you are seeking is what's called "logical empathy" in my book. I think your son is too young for that.

If we may take a leap of faith, and say your son and I share some Aspergian traits, my Aspergian experience says he's ALWAYS going to have trouble with the things you want to teach.

Teach him about himself, not about understanding you. He is never going to understand you until he understands the feelings in himself.

For a 6-year-old that's where the effort should go, in my opinion.

It can really take a long time to understand our own feelings. As soon as you can read them both, I urge you to read Daniel Tammet's Born on a Blue Day and then my book. Look at the different emotional content.

I am highly intelligent, but he is even more so, as best I can see. And yet, the emotional content in my book is far richer. Why? Because I'm twice his age. That's how long it took me to learn something of those emotions.

There are many things you can and should be teaching your son right now - about himself.

With respect to interaction with others, my feeling is that you're going to have best success with a few simple rules and guides.

Goals like you expressed will only led to frustration for both of you, I'm afraid. Make him understand himself first. That is the greatest thing you can do.

[Dori]

This is exactly how I feel!!!You are such a good spokesperson {for me}and such a great mom.

[Susan E]

I am with you all the way on this. Even if our kids were typically developing (ugh I hate this phrase), we would work with them on everything that kids need to know to make their way in the world, regulation and social skills included. So it bothers me when we fall into "camps" on these issues, but I guess I understand it too. Everyone needs their way of making sense of things...and blacks and whites are always more comforting than shades of gray, especially when daily life seems so unpredictable and haphazard. You just rock on.