Ramblings of an Aspie mom! This junk has been rattling around in my head for a few days or a week, and I need to dump it before I can wrap up and POST my "holy grail of DX" post that I've been promising and promising.
(1) Tell tell or not to tell? That is the question.
So, you'll remember that I was confronted with the question of whether telling 4A about her autism was the right (which means best for our family) thing to do. Lots of families living with autism struggle with the same question, and you can research what experts have to say on the issue. Most experts, in fact, I *think* probably all, experts are in favor of telling, of course.
I can tell you how we decided to tell and how we did it, but I remind you again that this is our life, our family, our journey. This might not be what works for your life, your family, your journey.
We don't think there's anything "wrong" with 4A. Instead, we believe that 4A's brain is wired the way that it's wired. While that doesn't matter or amount to anything, it does make it very difficult for her to spontaneously preform socially-necessary or -desired tasks, like following directions at school or at home, having empathy, and a host of other social tasks. Because she has to live in this neurotypical world, we'd like her to be able to navigate it. She doesn't have to like it, prefer it, or want it, but she does have to know how to navigate it so that she can survive. We hope that some day, the neurotypical world will expand to understand the different wirings of brains that exist in nature, but until then, 4A needs support to learn to navigate the neurotypical world and function within it. She will, after all, need to have a job some day to support herself, and jobs are all about rules and following them. Jobs provide income which pays for housing, food, and basic necessities. Perhaps, though, she won't have a paying job; maybe she'll be a nun or a missionary or a millionaire. Who knows? But, for now, we operate under the assumption that she'll need to provide for herself if/when we aren't around. It would be wonderful if she found happiness in her life, in whatever form she defines that, but that's a collateral issue.
As such, we are not ashamed or embarassed of 4A or her wiring. We aren't responsible for it, but we are blessed by it. It is a wonderfully rare and indescrible privilege to learn that things are not "normal" and to discover what truly matters in life.
Because we are not ashamed of 4A's wiring and know that we are not responsible for it, we chose to tell her about her autism, from a very, very early stage in her journey. After all, she was present for all of those assessments and doctors' appointments and therapies. She knew what was going on. She saw that her siblings didn't do those things or go to those places. We decided to tell her about her autism so that we could define its terms and meaning for her, rather than society doing that for her. For us, autism is wonderfully amazing and interesting and good. She asked me one time whether having autism is a "good" thing or a "bad" thing. How do you answer such a question? I told her that I think it's a WONDERFUL thing because it makes her her, and I love her.
Such was the driving force behind our decision to tell. There was no one lightening bolt moment of how or when we told her. I do remember talking with some scrapbooking buddies about how to tell her when I stumbled across pictures from a terribly dark time in our lives together. Should I write her a note to tell her about it? I decided just to scrapbook those pictures factually. It was all part of the journey, all part of her story.
So, our discussion with her about her autism has been ever-present and always on-going/in progress. It is, after all, who she is. For us, because we are neurotypical, it explains parts of her and how she thinks and why she does and who she is. For her, of course, it does no such thing; she needs no explanation because she lives and feels and breathes it. Unfortunately, the world perceives her as "different." It has been our hope and task and joy to show her how wonderfully normal her autism is. To explain to her how the neurotypical world works and to support her in learning how to navigate or mimic or master it. Not that she needs to for her, of course. She's perfect the way she is. But, if she is to function in this world in a way that allows her to access the most basic parts of it, she needs to know how to handle it.
In that way, it's really no different from preparing a neurotypical child for life. Here's how you wash laundry. Here's how you show kindness. Here's how you do subtraction. Here's how you handle finances. The list is just a little longer for her, that's all. And, a lot of the things we don't have to explain or teach to our neurotypical children require explanation or support for her. Same-same but different.
Does this mean that all families who live with autism need to tell? I, thankfully, have no way of answering that question. It's happily outside of my jurisdiction. I can (and did, I hope), however, explain what we did and decided and chose around here, in our happy version of autism.
I think my confrontation with the question about telling her last week was more sadness of what she's going to have to go through being "different" in a neurotypical world. I know in my heart that we did right by telling her; how could we not? But, I know that she's going to have a harder road to hoe because of it. There's nothing to be done about that, of course, except to help her weather it.
And, I think this is a horribly obnoxious or privileged discussion to have with myself. If she had Downs or drawfism or Fragile X, she'd look different in addition to having different wiring or genes. I wouldn't have the choice about whether or not to tell her. She'd know by looking at herself and by how people looked at her. Only because her autism is neurological and, thus, invisible does this conversation with myself even occur. Shame on me.
(2) Why behavioral support/intervention?
Egads! This is such a hot-button for folks, both living on the spectrum and off. I am somewhat confused by it, but I will do my best to explain it.
I am constantly introduced to or made aware of or asked about or by other parents who suspect that their child has autism the hows and whys of what to do. Hence, the blog, to reduce the workload. Sometimes, I also get similar questions from parents of kids who aren't suspected of having autism but have other behavioral challenges or suspected diagnoses.
I'll tell you like I tell them, that I don't know. I don't. I'm not a doctor. I'm not a behavioralist. I can direct you to some resources and tell you what we did, but those things aren't really relevant for you. Informative? Yes. Illustrative? Yes. Productive? Probably not. Mimic-able? I doubt it.
So, your kid is out of control. You know it. Ladies in the grocery store express it with their demeaning glances. People comment on it. Family tells you it. Whatever should you do? DEAL WITH IT! That's always my answer. Like I tell my children EVERY day, shit goes wrong all the time. That's what life is all about. Instead of trying to figure out how to avoid it, why not try, instead, to figure out what to DO about it. That makes life a LOT easier.
Off the soapbox.
People know that their kid is struggling. But, for some reason, they can't bring themselves to seek behavioral input. I *think* this is because they think they know what they're doing or can't bring themselves to hear that they might be doing something wrong.
Again, color me confused. Assume your child is showing signs of cancer: pain, loss of weight, constant illness, whatever. You've done probiotics and antibiotics and vitamin C. You've tried protein shakes. You've given Tylenol. Nothing is working: nothing you've read about, heard about, or tried in desperation. So, you haul that kid's ass straight to the doctor. When the doctor suggests a specialist who does chemo, which you KNOW will SUCK, you're getting your kid there, fast. You don't care that that specialist is going to tell you that what you were trying wasn't working. You don't care that she's going to recommend something else. You don't care that you may look like an idiot. You want to SAVE your baby. Right?
It's honestly, HONESTLY, the exact same thing. That kid of yours needs saving. Saving from being an out-of-control pain-in-the-ass that no teacher can stand or child will befriend.
I know that people don't get this. Know why? At times, when I've explained 4A's behavioral treatment, they'll say, "Oh! Well, I'm definitely already the mean mommy." Okay. Right. Because I haven't slapped her or spanked her or been consistent or meant what I said or set boundaries. Because I haven't been mean or tough or a hard-ass. (If you knew me in real life, I think you'd be laughing your ass off right about now.)
Here's the secret....ready?....I did ALL (and I mean all plus a few extra) of those things that you did--I was mean--I was consistent--I was a hard-ass--I spanked her--I put her in time-out--I didn't let her get away with shit--I insisted that she attempt to do age-appropriate tasks by herself--I didn't give in when she put up a fight, and.......ready?.....really ready?....because this is so obvious that I think folks miss it....they. didn't. work. They didn't work. Honestly. The same shit that all the rest of you have tried, that I also did because I am no idiot, did not work on this kid.
Now, the amazing Dr. Steve, fantastic behavioral psychologist that he is, gave me some new, better, more helpful tricks that aren't necessary with neurotypical children but that did work on my child with autism. Stuff you can't read about in parenting books because it isn't there. Stuff you haven't tried because you don't need it. Stuff that, thankfully, isn't mean or spanking or yelling but stuff that actually works. Stuff that replicates or mimics or artificially replaces the social wiring that your typical kid has. Mine doesn't, so we've got to make a fake version of that. (You can insert here, if you like, the impulse control that your kid is lacking, the self-control that your kid is lacking, whatever the deficiet may be, cross out social and write your ailment of choice in there.)
Behavioral treatment is a two-headed beast. On the one side, it's super duper easy. Easy, I think, in that it fixes the problem, and you learn to know how to be intuitive about it for your child who doesn't respond to the typical stuff that every one else is trying. On the other side, it is the most gut-wrenchingly difficult, exhausting, hard work you'll ever do in your life. You are going to be asked to do things that seem counter-intuitive, abnormal, unsafe, unloving. It really, really will be worth it, I promise. The lack of control or lack of impulse control or lack of social prowess or constant crying or constant tantrumming or whatever it is that you're experiencing now really will go away. You are going to have to work your ass off. It might take a LONG time. You may eventually need medicine to help it along. But, it is going to work. And, here's another secret, and this one is a good one. You didn't cause that lack of control or constant crying or constant impulsivity. You didn't. You may have inadvertantly reinforced it, even though you were a "good" or appropriately "mean" parent, but you didn't cause it. And, even if you did, you're about to get a chance to fix what you fucked up.
A good behavioralist will tell you that there is not a behavior that can not be changed. Not one. Regardless of from which it stems. Which, here's the super cool part!, means that you do NOT need to know from where the behavior comes. That kid's impulsive and out of control. Is it autism? Is it ADHD? Is it ineffective behavioral management (this does NOT mean bad parenting; it DOES mean that the behavioral measures you are using are either inadvertantly reinforcing or ineffectively curbing the behavior at issue)? Who knows?!? Who cares?!?! Diagnosis is not necessary. Behavior can be treated without it.
If I had one wish (okay, actually, it'd be one of a couple of wishes), I'd wish that people would get this. Not for me. I really could give two shits what they think of me or my parenting because that isn't relevant. But, for their babies' sakes, I wish they could get this. Life is so much easier for baby and parent when things are not out of control. If it's out of control and you've tried it all, including being appropriate "mean" or "firm," why on earth would you hesitate? The only thing you have to lose is control, and it seems to me that you've lost that already.