Estée KlarThe Joy of Autism

D.J. you hit on a note with me. As a parent, and perhaps not just because of autism but also because of the times we live in, we don’t give our children enough opportunities to do things independently, that is really true. Adam is eight and has gotten really curious, for example. He gets himself into situations that make my heart beat faster. Yet, asking other parents of typical boys (I prefer that word to “normal”) what’s going on in their homes and the same stuff is going on — the devious look (Adam gets that just before he’s about to be mischievous or disobey me), or they’ll turn around and get into trouble just because they are kids. When something is fun, then why bother listening to the parents? Aren’t these the lessons we all had to learn growing up? Must I anticipate a broken arm, a scar or two? Yikes, the though makes me cringe, but when boys tell me, or parents of boys tell me that they spend a lot of time in hosptials, I have to think twice that it’s not just because Adam is autistic, he does these things BECAUSE HE IS A BOY. It’s natural curiousity. Natural testing of limits.

The only caution I might exercise in discussing “independence,” however, is for those individuals with various disabilities who simply cannot do everything for themselves for one reason or another. There might be a motor planning issue, an inability to cross the street safely or cook. We’ve heard many of these stories from very intelligent autistic adults.

LIke all things, we have to weigh our situations carefully. Nature, nurture, context, etc. And parents need not be disappointed if children/adult children must be assisted or accommodated in life. There are so many other competencies to focus on, even with assistance.

Interesting thoughts on independence. I live in NC but moved to NY for a year to get my son proper services (mainly a full day pre-school rather than a 2 and a half hour a day program which was an absolute NIGHTMARE for a 3 year old with transition issues) but in any case, we had thought about moving to NY permanently and I remember the school was going to give my son an one-on-one aide…which actually worried me. I made it clear to them that I didn\\\’t want the aid doing everything for him. That in fact, I would prefer he not have one at all… I did not feel he needed one and by having one he\\\’d become too dependent on their help. We did not end up moving to NY and my son started Kindergarten in NC where they do not have one-on-one aides. Well that\\\’s nto true, they do but it\\\’s not an easy process getting one for your child. My little guy did great in Kindergarten without an aid. He was in a readiness class and at the end of the year his teacher insisted he needed to go to the all Autism classroom at a different school. I fought tooth and nail to keep him where he was (he was doing great there) and asked if he could possibly repeat Kindergarten in a regular education classroom with the teacher he had been mainstreamed with all year. They finally agreed, seeing that Mama Bear wasn\\\’t going to back down and I can\\\’t even tell you the amount of accompishment I felt when the teachers aid told me \\"he really was one of the best in the class.\\" :)

As far as dreams goes, I really try not to \\"dream\\" too much for my son…only because I don\\\’t know what he will want. He may be fine not having friends or ever falling in love or having children (although he tells me daily he wants to be a Dad.. I think he thinks you get paid for being a Dad.) So instead of worrying about love or friends… I bascially dream he will be self-sufficien as possiblet, happy, proud of who he is and able to advocate for himself.

Thanks, Emily. Good comment. As for dreaming, It’s definitely a fine line with those aides and therapists.

As for dreaming, I believe it’s natural to do so as parents, but we have to do it knowing that the dreams we may have for our children will likely/may not be the dreams they will have for themselves.

I wrote this post because I believe we have a lot of autistic people to be grateful for. They have achieved and shared a great deal of their lives in order that we as parents may see the possibilities, value and potential that may lie ahead for many of our children no matter what the challenges — and there exists an array of personal challenges many of these individuals have lived with.

I believe in gratitude. I believe that these are the people who are truly making the world for our chidlren more accessible. So for now, I dream…with an open heart.

Pardon the typo in the first sentence “as for dreaming” which belongs at the beginning of the second paragraph….I type way too fast.

I’d really like to go to Greece with Jim and Charlie, one day. And we’d also like to get the three of us to Australia (beaches……).

And I’d love for Charlie to one day return to an instrument. It was a few years ago that he played a little piano and cello. Too, it would be a fine thing if he might become interested in doing things like attending concerts, jazz festivals.

But I’d also just like for him to continue to be as (mostly) ‘peaceful easy feeling’ as he has been these past months. So often it’s seemed that peaceful periods for Charlie have come to an abrupt end, and then he really struggles.

And am quite tickled to know that JIm’s and Charlie’s bike exploits have been inspiring, thank you!

Indeed they have, Kristina!

You have an image of Greece and for some reason I have a vision of Tuscany — renting a place with a pool (Adam’s thing is swimming… he loves being underwater) and taking day trips or weekend trips out from there. I think he would enjoy the food, the art and sculpture and the easy living there…not to mention the Gelato!

I like the peaceful easy feeling you described as well.

Most of all I want Adam to feel happy in life.

Estee, I apologize if you had to remove a gazillion posts from me. I was trying to post a comment but it kept telling me that the security code was wrong. I swear I tried 10 times, I didn’t think it posted at all but then on the 11th try I got a message telling me to slow down and stop posting so many comments so then I was like “Oh, oh. I hope that all of thsoe didn’t post!” Please do continue to post these from your blog, I’ve been to your blog several times but since it goes back years, I get overwhelmed at where to start. You should post your favorites for us to enjoy! Just a thought.

Yes, I had to put that code in because I was getting a lot of spam…hate spam. Sorry for the inconvenience. I’ll check it out.

That’s an interesting idea. Thanks for the feedback. Maybe I’ll repost a few things. As I’m working on something, I always like to hear what others have appreciated/liked. So I would be most grateful if you would share this with me.

I like your dreams, Estee, and I hope that Adam can tell you his own dreams soon.

We’ve been lucky – travel to Europe, flute lessons, and a good school which suits everyone. And just this summer, Laura has learned to ride a bike – just the way she wants – with no trauma, and no falls – just taking it easy and getting the hang of each step at a time. And this fall she’s starting voice lessons – her own request,

So, now I know that her own dreams are what we have to go by. But her dreams are beautiful and should be encouraged.

Jennifer,
Beautiful!!!! I’m glad you posted. Feels like I haven’t heard from you in a long while. Sounds like things are going well.

Cool about voice lessons. I think singing lightens the load of everything.

DJ, thank you for your comments. It is a great help to hear from you. My son seems to prefer his independence, as well, but you are helping me to see that if I am willing to do for him, it would seem quite impractical from his standpoint to interrupt my efforts when the job is already being managed. My son is only four years old, and I also love those peaceful moments with him. I have a dream that Benjamin will one day be able to convey to me what he is feeling when he is not at peace. I would love to find his passion in this life and help him pursue it to the fullest. In the meantime, Ben has inspired me to return to school for a Master’s degree in government administration. I have a dream of making a huge difference in my lifetime for Benjamin, Adam, Charlie and DJ to live their lives to the fullest with many opportunities for joy and peace.

I think it is dangerous for anyone at all (disabled or not) to be raised with the expectation of independence. Independence is an illusion. Nobody at all is independent. People need to be taught that human beings are interdependent. Independence is a myth. “Independent” people rely on others for thousands of things a day. If you think you do not then you are taking a lot of people’s often back-breaking work for granted, which is a form of self-centeredness that many people in our cultures find acceptable. A supposedly “dependent” disabled person, even the “most dependent”, truly relies on only a handful more support than the “most independent” person does.

What makes the difference is ableism — the handful of skills that are considered dependence if you can’t do them are considered that way because the society in question doesn’t think it ought to have to provide them at all. The ones you can lack and still be “independent” are the ones that a society provides or can provide automatically. Class factors in as well. A rich person can be more dependent (both in work and at home) than a poor person and still be called independent. Also a disabled person can be considered “not independent” because of one skill they lack even if they have a hundred skills most nondisabled people rely on others for.

I was raised to be ‘independent’ and also subject to abuse and neglect by people who were supposed to care for me, so I had the same vested interest in ‘independence’ that DJ has. However, having a vested interest in something, and a desire to create it, does not make it magically appear. For me and many others like me, that so-called ‘independence’ never appears. And for some of us, including me, it not only never appears in the first place, but gets less possible with every passing year. People like us are also those the most harmed by the myth of independence — because that myth tells us that we are in the lesser class (and “dependent” is always lesser as far as the myth goes), whose needs don’t have to be met, they are only met if people want to meet them, unlike everyone else’s needs. And that leads to suffering and death for those who can’t persuade others to help them in those areas that they have trouble with. (It also basically reduces us to begging in order to get the support we need. Anybody who has ever had to go through the system on their own behalf ought to know what I mean by that. It makes you feel every bit the inferior who has to nonetheless act grateful for even the least and most abusively-given bit of help thrown your way, and you have to jump through hoops that nobody else is required to jump through to get their far more plentiful amount of needs met.)

I can see why the idea of ‘independence’ has its attraction, precisely because of what happens to you when you’re ‘dependent’. But the problem with simply running away from ‘dependence’ without questioning the whole concept of ‘dependence’ vs. ‘independence’, is that those of us who can’t run away from it still experience all the same problems that you’re running away from. Only we can’t get away.

So what happens to us? That depends on various circumstances. The same person can be put into the most restrictive part of the most restrictive institution in one place and live on their own or with roommates choose their own staff (yes, even if they have no easy means of communication there are still ways of honoring their choices) in another place. What makes the difference? No, it’s not degree or type of impairment. (Another myth that needs to die, and die now, and every single person who perpetuates it needs to stop, now, if they haven’t already.) It’s whether people have fought for different types of services or not. It’s whether people have considered the power structures that can create good and bad situations, and put in place only the good type and find ways of weeding out the bad type, and engage in a constant process of self-evaluation.

So yes, go ahead and run away from ‘dependence’, if you can. But once you get away, don’t buy into the mythology of ‘independence’. Set the record straight on behalf of us who can’t run away. Fight for those of us you left behind. And be aware of when your fight on your own behalf might be taking more from you than accepting help would be. I can’t count the number of people I know who have run away and run so hard they fell down in their tracks, sometime in their 20s, 30s, 40s, even 50s and 60s. And then they had to ask for help in the end. I spent much of my childhood running away, but fell down almost before I got started. (The metaphor reminds me quite well of the more literal reality of when I was having atonic seizures. I’d walk a certain distance, and find myself on the ground (with others telling me I hit the ground seemingly faster than gravity) hurting all over, and then I’d get up again and hit the ground again, and this would happen randomly but frequently until a solution was found. That’s much like how the running away from ‘dependence’ went for me. I never got far.)

And yes, there is something wrong when ‘dependence’ is something you have to look down on. When it’s always ‘the thing you don’t want’, just by its nature, somehow. When ‘encouraging independence’ is always good and ‘encouraging dependence’ is always bad. Why not just escape the trap altogether and encourage interdependence? The idea that nobody is independent, ever, and nobody is specially dependent either (which requires comparison to “independence”), except for in how certain values in a society are enforced (often brutally) upon its members. (The myth of independence only exists in some societies, for that matter. The dominant American and Canadian societies are among them. Some societies completely acknowledge that independence is a dangerous, selfish myth that contains some ugly power structures underneath it.)

Unless something major changes either physically and cognitively in myself, or a more widespread change in my society, I am going to spend the rest of my life as a person thrown into the ‘dependent’ category (and, since some of my conditions are progressive, progressively ‘more dependent’ over time) by others. The category may be based in a myth, but its enforcement is very real. I’m neither someone who was ‘encouraged into dependence’ by my family, nor someone who was able to run away into ‘independence’ because my effort and upbringing made it so. People like me are generally completely disregarded in the debate as to whether to raise ‘dependent’ or ‘independent’ children. But sooner or later in life, every person, if they don’t die first, is going to face being considered ‘dependent’ in some way. It’s much better to prepare a person for the idea of interdependence, and for the idea of fighting the parallel myths of dependence and independence, than it is to have this reality smack them out of the blue when they’re least expecting it.

Nobody prepared me for the life I am living now. When the question of dependence vs. independence came up it was always framed in stark black and white terms. “Either you will live the rest of your life in a mental institution, or you will ‘recover’ and be ‘fully independent’.” Nobody prepared me to navigate a system of services that wanted to push me into some kind of institution (whether group home, ICF/MR, large institution, or various less traditional things that had institutional power structures over “community” trappings) but could be forced into giving me services in my own home (which existed only because of the efforts of self-advocates and parents in the past). Nobody prepared me to find ways of reporting and handling abuse when it happened. Nobody gave me the skills it takes to live in such a system as an adult. Nobody thought it would be necessary. Either you “succeed” totally (and live without needing nonstandard support) or you “fail” totally (and forfeit the right to determine anything at all about the form your nonstandard support takes). That’s what most people are led to believe, but it’s not true. And where it’s true, it doesn’t have to be true unless people are too caught up in the struggle for this illusory “independence” that they don’t have time to fight on anyone else’s behalf (or on their own in the future — few people want to spend their later life in a nursing home, but even fewer people actually bother to fight for alternatives unless it’s their turn, and usually not even then). Whereas when I was 14 years old and had spent my first few days in a mental institution I had a dream, like a literal dream as in the kind you have when you sleep, providing one possible blueprint to end (and, of course, replace with something better) all institutions from mental institutions to nursing homes to many kinds of foster care, even though I didn’t know the words that united them or the existence of movements to change these things. And while it took me a long time to work towards implementing any of the ideas that gave me, I still did it, because something inside me told it me it was the right thing to do. The way the dream showed me (a secret network of safehouses with a combination of outside people helping and the would-be “patients” of other places helping each other, basically) was impractical, but at least I was trying to solve the problem instead of just accepting that things had to be the way they were right then.

It’s not that I don’t understand the need for individual solutions when other solutions aren’t possible. The need to get away from something because it’s bad, rather than stopping to try to change the world first. But it’s also flawed. Especially if, after you get away, you simply regurgitate everything you’ve been told about the value of independence and the awfulness of dependence, and by doing so aid in continuing the flawed system as it is. It’s not that gaining certain skills is always somehow bad. (It can be, though. If the person is so worn out from using them that they’re suffering greatly, and yet keeps using them because it’s the only way they know.) It’s that failing to gain them also isn’t somehow necessarily bad either. That there shouldn’t be a value judgement here at all. And that interdependence is the reality for all of us, including those who think they’re “independent”. I suppose my own dream would be for people to recognize this and do their part to end the systems that keep this going, and replace them with something better. And in the meantime, to stop perpetuating these messed-up values that harm people who can’t escape the least-valued positions.

Amanda, I am really glad you came to comment on this because you have done a lot of work talking about our notions about independence and dependence.

It is casting a value-judgement and it seems like a really big hurdle for most people to understand.

In terms of teaching the skills to navigate the systems that do exist, how have you done it? Could you offer advice for individuals, particularly for people like my son who is very challenged verbal communication, that might be helpful?

Wow, Amanda. Thank you for your insight and perspective into the issue of dependence versus independence. I obviously have not looked at the world through your experience, nor could I completely ever understand from your perspective what a parent’s desire for her child’s independence might sound like. Just know that you have been heard and are being heard. Do not quit speaking with regard to the abuses out there and limited choices that those who are classified by our society as “dependent” are subjected to. You have a voice and you are saying things to the world that we all need to hear. I would love to hear, as well, how you have navigated the systems that do currently exist. I know that I have taken law courses to advocate on behalf of my son, and that I am now looking at furthering my education to even better advocate for his future needs and the needs of others who face similar challenges. I cannot fathom being left on one’s own to adovcate for one’s self without a system of support because you are right, we are all truly “interdependent”.

my voice lessons were given to me by my aunt who also teaches some amateur pop singers to improve their voices -~’