Talking About Autism

Fluffy and Mama Mama reading; December, 2006.

I don’t know how to write in here anymore. I’ve said that before, I know. It’s all part of a growing sense of confusion or maybe it’s a transition? A transition out of crisis mode which is where I was when I started this blog, and into something else.

I’m not in a crisis anymore. I don’t feel that swirling panic or entrapment or fear. I don’t have that unicycling in and around the red cones while juggling flaming balls feeling. I don’t feel like my son is having a neurological equivalent of a heart attack while professionals blithely glide by, alternatingly offering dire predictions for his future, sure pronouncements about the static nature of his deficits, and flip assurances that he’ll grow out of it. I don’t worry, OVERLY, about his happiness or the possibility of his having a full and meaningful life. Not OVERLY.

I have this map about how to provide for my son’s needs. I have this space in my heart that knows what he needs, this mother space. I don’t KNOW if it’s absolutely right. I can’t be inside my son’s head; I can’t know what he feels. All I have to go on is my ability to hear, see, and feel this mother space as I hear, see, and feel what is going on in front of me, day to day, with my son, what he says, what he does, how he looks.

Our day to day seems to be working. We have our ups and downs, days of dysregulation, patches of tall grass, but that is life, right? Things don’t progress along smooth graph lines, steadily climbing up with smiley faces stuck here and there. Life is messy and unwieldy at times. But a large part of why things are working is because Fluffy is able to communicate so much to me. He can listen and answer. He can make his needs known. He can reason and imagine, project and remember, pretend and create.

When Fluffy was first diagnosed, I felt very alone. I didn’t know anything about autism. I didn’t know anyone who had an autistic child. The divide between my life and that of my friends grew wider as they sailed past in their mini vans on the way to playgroups and schools and grocery stores and weekends away with and without their children. I didn’t relate to their lives and they didn’t seem to relate to mine. They either blanched at the word Autism, or blinked in the face of it, looking at Fluffy who certainly didn’t fit the stereotype they had in their minds of a ‘lost and silent’ child spinning plates in the corner, and back to me. What’s the problem? He looks fine to me!

Once I started blogging, I found a community of mothers with children on the spectrum. I felt a kinship with them. I still do. But I also felt sideswiped by the wave of turmoil and debate that swirls in the autism community. Or rather, in the various spokes that emanate from that center word-- Autism.

I’m not an expert on any of this. I’m not an expert on what the mothers of autistic kids say or what the autistic teens say or what the autistic adults say or what the non-autistic professionals in the fields of education, psychology, neurology, developmental psychology, genetics, and autistic treatment and intervention say. I’m not qualified to speak to a lot of what I see and read and hear. I’m not even sure how much my voice matters in all of this, in my tiny corner of the blogosphere or anywhere apart from my own home and my own family where I’m not the least bit shy about speaking my mind.

My son is on the spectrum. He has Aspergers. Some call it high functioning but I hate that crap, that functioning scale, and I don’t use it. He has Aspergers. That’s that. He has his own particular expression of it because he is a unique child, like all children; he is an individual. I say, each expression of Aspergers is unique; each expression of the spectrum is unique. Many seem to agree with that and yet they will say in the same breath that a child doesn’t HAVE Aspergers--they ARE Aspergers. Oh? How can that be? If we assume all cases are unique, then how could a child BE the neurology? It doesn’t make sense.

So, my son is on the spectrum. I am raising a child on the spectrum. But just like a wise pediatrician once said about raising the typical child, not all parents have the same job. The same holds true on the spectrum. Even though all parents are doing their best to provide for their child in a way that holds the child’s best interests at heart: Not all parents of ASD kids have the same job.

So, I talk about raising Fluffy here, my Aspergers son. Am I perpetuating a stereotype? Since my son is eccentric, brilliant, and verbal? That all Asperger kids are this way? That all I have to do is guide him through the turbulent years of school, la la! and other odd and largely useless social conventions and soon he will step into the world and, like the many quirky and genius compatriots that came before him, make some brilliant but solitary contribution to the world like Einstein or Jung or Kandinsky or Mozart or Twain and on and on?

Do I have anything to say or offer to those raising the nonverbal child on the spectrum? Do I understand what their day to day life is like? Am I qualified to urge them to try RDI or homeschooling or any other thing that we’re doing?

Do I have anything to say or offer to teens and adults on the spectrum? Do I understand what their day to day life is like? Am I qualified to urge them to see my interest in RDI and homeschooling is not about trying to make my son into a different person but about trying to allow for his growth and development? Does that have to be seen as an affront to them and what they do and don’t do or like or feel or want?

I like to think of myself as part of the neurodiversity camp. Everyone needs respect, understanding, acceptance. We all need to stretch as a society to widen our embrace, open our eyes, expand our minds. In order to do that, I contend, we have to face fears, whatever they may be.

Kristina said in the comment section of her blog, Autism Vox, (and I paraphrase) she wished there was less time spent on trying to figure out what autism is and more time spent on how to educate our children. I say yes--more time spent on how to educate and support the children on the spectrum which means educating and supporting the adults interacting with those children. All of them.

I keep thinking, this has to be, at its core, about fear. If there wasn’t so much fear, there would be more curiosity, genuine interest in other points of views, ways of seeing, thinking, doing. Or maybe it’s about a willingness to practice a kind of discipline in discussing differences.

There are things I want for my son. There are things I would fight hard to protect him against experiencing. I’ve been searching for a metaphor but it’s tough. This morning I thought about sight. If my son’s ability to see was threatened, I would do everything I could to keep him from becoming blind. Does this mean I don’t respect blind people? Or believe their life is less than because they can’t see? No. If he went blind, would I throw up my hands in despair, forever grieving his lost sight and longing for the chance to have a sighted son? No. But it is fair to say that not being able to see is something I don’t wish on my son or anyone. Even though, CLEARLY, those who can’t see deserve respect, understanding, acceptance, and adaptations in order to move through this world. Even though, CLEARLY, sightlessness is nothing to recoil from.

We don't expect our children to be born blind; we expect them to be born sighted. When they are born blind, they are born with a deficit, in the area of seeing, yes? This is a deficit even though they are not defective. Those who are blind have as much of a chance at leading full, rich, meaningful lives as those who are sighted. There have been sightless individuals since the dawn of time. This sightlessness can be a result, among other things, of gestational quirk, disease, accident or medical intervention made possible through technological ‘advancement’ of our time.

When I hear someone say they are glad they’re autistic, I think, they’re saying they love and accept themselves. I love that. We should all be glad we are who we are. We should all love and accept ourselves. We are all deserving of that love and acceptance. But this is not an ‘argument’ against parents doing what they can to alleviate or eliminate the profound challenges a child’s autism creates in their day to day life, in communicating needs, desires, feelings, in coping with sensory assaults, in leading independent lives where they may be able to make a contribution to the world that reflects who they are and what matters to them.

I keep waiting for the day when the conversation is less threatening. Not waiting--wanting. I want the conversation to be less threatening. It’s like the writing. Let’s approach the many threads of the autism discussion with an attitude of acceptance, as if it’s already being blocked in for publication. Then we can put our defenses away and look at the individual expression to see where it works, where it doesn’t and what it needs in order to for us to hear what each particular piece is trying to say.

Comments

[Shawn]

I may be a day late and a dime short but I wanted to join the masses and tell you to keep blogging!

I totally understand how you go through the process from chaos at diagnosis to acceptance. I am also using my blog to journal our journey. I find it helpful to be able to look back and reflect on the days past. This way when I get frustrated and feel like progress is slow I can skip back a few months and reflect. It always gives me perspective!

I am so happy to have found this network of Autism families on the blogosphere. However, it does make me sad that there is such discourse amongst the autism community. I suppose it is human nature that everyone won't always agree.

[kyra]

wow. all i can say is, you have ALL helped me over the hump! my humble and heartfelt thanks. truly. we're in it together, eh? and as fluffy said to me the other day, "oh, well. i guess that's the way life is. sometimes i feel good and sometimes i feel bad."

yes, honey.that's the way life is. and when you grow up, you can blog about it and read the comments and hear from the people in your corner, those holding the sweaty towel and that fun squeezy bottle that sprays a stream of cool water.

[Becca]

I hope you keep writing here, too. And I don't think you need to worry if you have "something to say" -- implying something important, new, earth-shattering, etc.? Frankly, you often say some inspiring and profound things, but even (or especially) the day to day stuff is just as important. Because I'm living my life day-to-day, too, and I want to see what my compatriots are up to. I don't often write about the various autism controveries (causes, "cures", whatever) though I sometimes read them (more often I avoid those blogs that talk about these overly much). It's not my thing, and I don't think it's necessarily yours. People relate to your stories of Fluffy precisely because they're individual and real and specific. Maybe now that your crisis mode is over, you can write about other things -- books that interest you -- music -- your new pants -- whatever. I'm interested in reading your witty, observant take on any subject at all. And I'm sure your legion of other fans are as well.

[candace]

Just keep writing! I'll read whatever comes up on the screen. Everything you write is compelling to me, really. I love seeing Fluffy's progress, I love referring people to this site, I love seeing glimpses of your life.

Just keep writing.

[Mamaroo]

Yes, our kids are very different in many ways, but as much as Fluffy talks and as little as Roo does, I see similarities, wonderful qualities that our two boys share. No, they may not fall the same on the spectrum, but reading about Fluffy and how amazing he is always makes me feel good. Keep "talking about autism" or just keep talking about the day to day stuff. I love the way you write and you have cracked me up so many times with your humorous way that I would miss reading what you write way too much if you ever stopped.

[liza]

Please don't quit writing! I check your blog everyday, and you're quite inspirational to me!

[Ian Parker]

I quite like and enjoy your posts on what I’ll call ‘day-to-day’ life. They lend a quiet inspiration - through spirit, and progress, and hope.

But I also appreciate the clarity of thought and expression that you bring to the autism ‘discussion’ in posts like these. This is another one of those that you write that become instant classics. It succinctly states the case for acceptance and amelioration, for those who choose this path, as opposed to having to pick one or the other as if they were mutually exclusive poles.

We need more voices like yours in the community of those touched by autism. Thanks for writing.

[estee]

I want the same. No dissention. Acceptance of our shortcomings, our unknowing, our children, and others.

[Zoely]

in the middle of my own pile of feces over here, not like yours, but also at its core, just like yours: there is fear and there is the desire to remediate. you & i are blogging buddies outside of diagnoses...i think you've helped a lot of folks and just knowing you're here helps me, so i hope you stick around.

[MommyGuilt]

You've been to Wade's blog recently, haven't you, his post entitled "For What it's Worth,"(injectingsense.blogspot.com)? If not, you're still stating the main theme behind that particular posting - that sometimes the political and the differences in stances on "what to do" about/with/for autism just get so lost in arguement from the different camps, that NOTHING gets accomplished. I agree completely, that gets totally frustrating and awful.

But you, my dear friend,are such a rock for SO many of us. You help us to see that, though we may be used to the meltdowns, the "quirks", walking through the tall grass, we're all still doing it - and we all still need each other, even if it's only to briefly look into another family that has the word "spectrum" written into its surname.

I've had similar thoughts about posting lately - had nothing really to write about, not even Ex, but I know that this huge community out there needs SOMETHING, especially those who are new to the "A" word, need to know that there are families out there, like ours, who have kinda sorta figured out a rhythm of what works, how to work with this or that, and how to ride the current - at least til we get to our next stage in life, adolescence (of which, God help me, we're on the verge with SmallBoy - ahhhh,see, inspiration for a new post for me!).

We need your voice, K, even if it's just a "Hey, guess what Fluffy did at school today," kind of post. Keep writing!

[kal]

Just beautiful. This post really resonated with me and makes me feel hopeful at a time when that's been a challenge. Now look, if you can do that and also touch so many others, you definitely are doing a great thing simply by writing about what you know. And that's enough (and wonderful!) And I, for one, am very grateful that you continue to do so.

[jennifergg]

Hi mama! I love what you have to say. I don't have a child on the spectrum, I don't know a child on the spectrum, and I want to understand this part of motherhood. You are my unofficial link.

And too, I have a son who doesn't look like many other children, and who won't learn like most children, and who has his own sort of spectrum. I'd like for more people to choose love, too, for his sake.

[mom-nos]

Do you have anything to say or offer? Yes, you do. Fluffy and Bud are very, very different, but reading your words and getting to "know" you and Fluffy has made (and continues to make) me a better mom to Bud.

A friend of mine told me that he believes there are really only two motivations in life: love and fear. It's up to us to decide which one to use as a motivator. I think about it a lot as I navigate my way through parenting, and it helps.

[TSM-teriffically superiorily mediocre]

I am completely unqualified for commenting on this subject. I do, however, have a neice and nephew who are on the spectrum. Both of them. One has Asperger's, the other has Autism. These children are amazing! I cannot say that I understand my sister's day-to-day struggles, but loving these kids like I do has really opened my eyes to a world I would never have known without them.

I just wanted to offer some encouragement, and tell you that your writing, even if just to say what kind of sandwich the kids had today, is a life-line to another parent who never knew life could get better than it is now. Hope. You write hope. Imagine yourself before you were armed with knowledge-someone feels JUST like that RIGHT NOW and is looking for YOUR blog-what an impact it will have!

Just remember, this is your blog, your choice. Even if you chose to leave it behind, you've already helped so many people. I hope some of them have thanked you for your bravery.

[Liz]

Please don't stop! That post just demonstrated how beautiful and clear your writing can be, and the world needs more of it.

Personally, my favourite posts here are the ones that describe a day in Fluffy's life - his achievements and success. For me, your blog is a storybook that can only have a happy ending, and I want to keep reading until the end. So, please don't stop :-)

[kristina]

Keep talking, keep blogging, keeping being the great teacher and life-long friend to Fluffy (and us) that you are!

[Lisa]

That is beautiful --what you wrote, how you feel about everything, and how you've reached this place of comfort. I was really moved reading this post. Thank you for your honesty and insight.

I used to write about special education for a newspaper and got to visit the programs of schools around the country. I was constantly amazed at the children I met. Like you said, children with the same diagnosis are completely different. They have so much to teach us about life and being human.

Lisa

[Lisa]

That is beautiful --what you wrote, how you feel about everything, and how you've reached this place of comfort. I was really moved reading this post. Thank you for your honesty and insight.

I used to write about special education for a newspaper and got to visit the programs of schools around the country. I was constantly amazed at the children I met. Like you said, children with the same diagnosis are completely different. They have so much to teach us about life and being human.

Lisa

[squaregirl]

Beautiful Kyra, and well said. This has to be one of my favorite posts anywhere on the blogsphere. I absolutely loved this post!

[Alison]

oops, new to this blogging thing
burgiboogie.blogspot.com. P.S. My sons name is "fluffy" too;)

[Alison]

As a mother of a visually impaired child with autism, well said. Unfortunately, you may be suprised at the equally confusing debates among the VI community. No one can make everyone happy.
[email protected]

[Christine]

Hmm. There is a lot to chew on here. You know, I've started and stopped drafting a similar post a couple of times since the beginning of the year. I started writing for exactly the reasons you described. And now? Well, I don't feel the same grief, the same pain. In fact every day is just normal to me now. Yes, there are the hard days but I don't let them consume me. I'm on track now. I'm OK. And Oliver will excel as much as he is able and that is all any parent can hope for, right?

I had thought about calling it a day with my blog. I'm not a great writer. I don't have anything all that profound to say. But I recall how I felt when I got the diagnosis. THAT was profound. And, as you say, there was a lot of fear out there -- in just about everything I read. I only started to breathe again when I started to read about the ordinary everydayness of other families. Without these small little pieces of cyber real estate there isn't a whole lot out there that is uplifting, that shows every dimension.

It's important.

[gretchen]

Kyra, I've often thought in terms of the "blindness analogy" also. When Henry was first diagnosed and I was swimming in options but not sure where to get direction, I thought: if my kid was blind, someone would tell me what to do for him. I would learn braille and he would go to a special school for blind kids, or maybe he would go to our local school with supports. But everyone would understand what I meant when I said my son was blind, and while they might feel sorry for him because he couldn't see, they would not be afraid of him or confused by him.

And for the most part everyone would know what to do for my son to help him get by in the world: help him see what he can't see!

Maybe someday it will be that way for our kids (and for us)?

(Sorry to take off on that tangent. I guess it's ridiculous to wish for a "more mainstream disability!!)

[Harvest Mom]

Here, here!! Well said, my friend! The funny thing about all the "controversy" is that I never even knew it existed before I started reading autism blogs (which didn't even really happen until I started blogging myself). I think it would be entirely insane to think that a parent can't both respect and appreciate their own child's unique personality while at the same time working towards ensuring a good quality of life for them. And I LOVED your metaphor about sightedness -- I think it's a very fitting comparison. Rock on, Kyra!

[Laura Cottington]

Kyra, what a beautiful way you wrote this post. It encompasses so much of what I feel too. You BETTER keep writing and sharing. It doesn't matter whether Fluffy is more verbal or where he is on the spectrum, because whatever you write reaches somebody, and that's better than nobody. We are all in this community together. Consider yourself a blessing to those who read it. I write to release. I have changed my life since Sam's diagnosis. I left a career of teaching for 15 years that I loved. And I have NO regrets. We do what is best for our kids. So now that I am staying home, I need to write as a release or connection to others. May you continue to share your love, wisdom, and care for Fluffy so that "those" who see Autism as a curse, can see it is a child to love forever as you do!