Sunday, February 11, 2007

Goodnight Autism

So I decided to put this whole autism nightmare to bed to quiet my mind and let me get back to obsessing about something that functionally matters to my daily existence! After exposing myself to some pretty extreme opinions on both sides of the spectrum (so to speak), here's what I feel...which really isn't any different than what I have always felt in my gut.

Of course my opinion is based on my experiences, so let me give you a little background. And to be clear, the following does not do my boys justice. They are as beautiful and amazing as they are complicated and confusing. I cannot sum up their personalities or their lives in a blog, so don't expect it.

Bubba is missing his corpus callosum (the part that connects the two hemispheres of the brain) and Moosie has no structural differences although he has had "symptoms" of neurological variance for quite some time.

Bubba was a big (9lbs 4 oz) colicky cranky baby who came out rooting like he was constantly starving. He never wanted to be put down, had to be held "just so," and was always on the go. We knew the day he was born that he was, as the hospital put it, missing part of his brain.

Bubba was in early intervention at 3 months old. Physically, he was hypertonic (increased muscle tone) and it was clear his left side of his body lagged behind his right. An MRI at 3 months confirmed the agenesis of the corpus callosum along with less brain matter on the right side of his brain. The neurologist suspected him to appear as an infant who had had a stroke, but Bubba physically excelled. The only thing we struggled with was"behavior." "Behavior" was the vi sable symptom...inappropriate, unacceptable, untypical, whatever you prefer to call it. Bubba was alway healthy (physiologically speaking, if you are the type to presume disability as not being healthy).

Jump to today, and Bubba has a very short attention span, short-term memory issues, processing issues, sensory issues, self-regulation issues, and the list goes on and on and on. He displays several autistic characteristics, he has learning disabilities, he has coordination issues. Bubba is however a spark, and this is the part that we love and the part that makes us shudder. Depending on the circumstances, he can light up a room or set it on fire. I mean this figuratively and literally.

Moosie, on the other hand, has been very passive and quiet since the day he was born. He was also big (9lbs 12oz), but couldn't even suck my pinky until he was 3 or 4 days old. He couldn't figure out how to nurse until he was 3.5 months old, choked and gagged on his bottles of breastmilk for those first 3 months, and had absolutely no hunger cues, or perhaps he wasn't sure of how to communicate his hunger. We had to wake him to feed him, and it was torture to get him to drink more than 1 ounce. He has mild low muscle tone (distally).

Moosie was happiest being left alone. Since I had Bubba first, I was completely confused when Moosie would cry, even as an infant, to be put down. Even now, he will wonder off, crawl under something, and happily lay there alone fiddling with either his blanket or toy. Moosie did coo, but never babbled or anything after that stage. There were never raspberries, he didn't gesture or respond to much of anything verbal. He did, however, love seeing balls bounce or be thrown and would do what we called (and still call) "the happy dance." We had to fight to get Moosie into early intervention, and he eventually began therapy around 16 months. Moosie was usually pretty physically sick until he was 2, mainly he had gastrointestinal and respiratory issues.

Fast forward to now, Moosie is still sweet, cute, and quiet. He wants to be doing whatever Bubba is doing. This means he wants to have whatever Bubba has and be in close proximity to Bubba at all times. He has some motor planning issues, he only has a few verbal words and about 50 signs. He "happy dances" a lot to things that move (credits in a movie, garage door, flushing toilet) and to anything else that excites him. At three he hovers at 29 pounds, but as long as food is visible or accessible, he'll eat like there's no tomorrow. His ankles still sometimes give out when he runs or dances. Most people can't pass him without recognizing the cuteness factor.

Both boys are very social, though not always "appropriately" in the typical definition. And both boys are attention seeking. Bubba's social issues seem to stem more from his attention span, lack of self regulation, and difficulty with processing. Moosie's seem to be more centered around not knowing what to do in play unless taught first.

The boys are more different than they are alike. Bubba thrives off music, Moosie could care less. Bubba never stops chattering or talking, Moosie rarely makes a peep. Bubba is always on the go, Moosie would rather lay back. Bubba is physically aggressive and explosive. Moosie seems to tire easily. Both boys have absolutely no safety awareness, the difference is Bubba is 7 while Moosie is 3.

**To cure or not to cure**
When Bubba was born, I grieved. I don't think I mourned for the perfect child, more like an easy child, an easy life. I think I was trying to find my way out of a clueless, uncertain, puzzling despair. Absolutely nothing made sense and I was deprived of sleep. So I cried a lot and I tried to replace my fear of the challenging, unknown future with information, which pretty much backfired on my sanity as it has seemed to do recently.

During this quest for information, I specifically remember a conversation on a list serve regarding stem cells...this was over 6 years ago. Many parents were very excited about the possibility of using stem cells to grow a corpus callosum for their children. Even then, I remember how shocked I was at that concept.

To me, the brain is the ultimate definition of being. This wasn't about replacing an arm to function or a heart to live, this was altering his 'self.' Imagining Bubba with a corpus callosum was like imagining a different child. I still cannot separate either of my children from their disabilities. It is all so intricate, all so finely weaved. In my own case, my OCD, anxiety, and depression is the same. Maybe it's the fear of change or adjusting my idea of my own self-concept. I'm having a hard enough time adjusting to my recent short-term memory issues as my "good memory" was such a key to my concept of 'me" (in my perception). I am not saying I would not choose to intervene (I have taken medication for anxiety and depression), but the effects of that treatment had to be taken to consideration on how it altered my sense of who I am. For me, one treatment made me feel so unlike myself, that I couldn't do it. Did it help my depression and anxiety? Yes. But was the result worth losing parts of who I am that I identified with? No. Maybe there is a treatment that is out there that will work just the way I need it to, but I doubt there is anything out there that isn't give and take. I am not willing to give my sense of self at this point in time. Maybe that will change if the benefits of treatment outweigh any pieces of myself that I have to give up.

So with autism, I am reminded that it is a collection of symptoms. To me it serves more as an adjective than as a noun, a liquid rather than a solid, abstract more than concrete. And in every ounce of my being I cannot fathom that a collection of symptoms or something as multifaceted as autism could have just one cause.

With this, do I think autism can be cured exactly? Not exactly...keep reading. Do I think some or all symptoms can be minimized, alleviated, reshaped, etc. be it by medication, treatment, intervention, etc.? Yes. Do I think the same thing done in the same way would have the same outcome for all people with autistic characteristics? No. If all of the symptoms of autism are alleviated, does that mean the person no longer has autism? Well, technically yes since the diagnosis is based on the symptoms existing. If the symptoms don't exist then neither does the condition that is defined by the symptoms. Does that mean every person who had autistic symptoms, but whose symptoms were alleviated are all of a sudden neurotypical? I don't think so. Does that mean all of a sudden autism can come back if medication is stopped, or there is brain trauma, or there's a full moon? Technically, my guess is yes.

I guess what I'm getting at is that there is no one answer. We are complicated processes of chemicals, structures, and experiences. I think this is why I am struggling with some of the extreme messages out there. Should no one with autism be treated or cured? How can you globally make a decision like that? Should everyone be cured? To imply that there is only one cure just doesn't make sense. And to imply that all symptoms can be cured or that there is a "fix all" doesn't make sense to me either.

**Prevention and Treatment/Intervention**
For me personally, prevention, treatment, and intervention are not about fixing, but more about functioning. I think society has generalized functioning into terms of what's most convenient, easiest, and in the majority. Helping my children to function in our home is much different than helping them function outside of my home. I think without intervention, they would not be functioning where they are today. But intervention for me has always had to be balanced while respecting their inner cores, or in other words, what I feel as their "sense of self." That may sound quacky, in fact it probably is. But that's what sits in my gut day in and day out. While my viewpoints may change based on exposure to different ideas and experiences, that fundamental belief has not changed since the day Bubba was born 7 years ago. I realize that "their sense of self" is how I interpret what the are communicating or not communicating to me...I can't get away from perception. But I do my best to listen and to watch.

I don't think anyone can say they are completely against treatment or intervention, as isn't that what parenting is really all about? We are teaching and shaping our children, which are really prevention and interventions based on what we have (or have not experienced) in our own lives. I don't think there is any argument regarding intervention, treatment, or prevention--most likely the battle is over the right intervention/prevention or the purpose of intervention/prevention. And to see the core battle in that, just reflect on your feelings on behavior intervention (do we spank, use time out, rationalize, do nothing) or prevention of dependence on assistance with falling asleep (do we cosleep, have them cry it out, have a structured routine before bedtime).

I think it all goes back to choice and individuality. As I said above, intervention to me is tailored by the natural direction of my children. It is also about functionality and my knowledge of alternative ways to make that functionality possible. It is also about choosing methods that are as least invasive as possible. You know, the whole risk versus benefit judgments we all have to make. And of course risks and benefits are as muddy as the rest of this mess, unless maybe it's about life or death. But we can muddy up that too if you like.

The choices out there are interpreted by me based on my experiences and nonexperiences to date. And my husband doesn't feel the same way I do with everything, as his choices are based on his experiences and nonexperiences to date. So we listen to the choices of our children in the best way we can and trump with our choices when our experiences tell us we should. This doesn't always make it right or OK, but it's how it works. And I wouldn't be honest if I didn't say that how and why I intervene is also based on how my children impact me, my life, and what I can physically or emotionally handle as well as what I willing to compromise or compensate for. This last one is a factor in the overall decision, not the decision-making factor.

**So now what?**
So what does all of this mean? I don't know. I think it means that to me the spectrum of autism contains so many variants at this point that it is nearly impossible to tease out any one cause or treatment. I think the spectrum is about to wrap around us and choke out much progress of new interventions, treatments, accommodations, and acceptance. I feel like it is good that funding is coming, but Lord knows what the funding will be used for. I see so much hate and disrespect in the underbelly of the autism community, it sickens me.

I also don't think the spectrum is's more like a scatter plot! I have yet to meet or hear of any child or adult with autism who is exactly the same. And it bothers me that we have placed individuals with autism on a linear spectrum. It seems that according to Alison Singer your place on the spectrum is defined by ability. But this definition, if you will, confuses me. For example, Bubba can speak and react, but the way he processes things affects his interpretation and his actions. He is scored as having low-average intelligence. He can't self-regulate and has violent meltdowns. He is very "present," but only he knows how "aware" he is. Since he is constantly "talking" and "interacting" he appears very engaged, but all you have to do is to ask him to repeat what you just said (even just one word), and much of the time he can't. He is very curious and by his questions, it seems he is a sponge. He can recall the strangest of facts. He can recall much usefull information, just not always at useful times. At the same time he has trouble recognizing the sign that his bladder is full before it is too late. If you were to judge him on appearance, his autism-ness would change hourly, situationaly. Moosie can't verbalize, so even if he has a million things to say, until he finds a way to communicate, he can't express them. It is clear he is quite the problem solver, and a doctor predicts he is of high intelligence. He dances around or 'stims' as some say, and takes pleasure in hoarding objects and stuffing his mouth. He is only three--much like his brother at that age, we have no idea what lies behind his doe eyes. So you tell me, who is more affected? And how did you decide? Based on intelligence, ability of social interaction, ability to conform, ability to control one's self, ability to understand information? Ability to recall information on command or at all? Ability to communicate the information understood, how it is interpreted, or how it is recalled?

Are my children "high functioning"? Do my children have a place on the spectrum at all? Does it even matter? Do I even have a right to my opinion? If autistic symptoms are found to be caused by 25 different things and any combination of all or some of them, are we then looking for a cure for autism or something else exactly? I don't think I'm being judgmental here, as I am part of the problem. Both my kids are diagnosed with PDD-NOS, which I am carrying as a ticket to services and funding. You read their background, so hopefully you see the need for some assistance. But note that without the autism ticket, they are "written off." It is not my fault that their disabilities don't fit into an accepted mold. It's not my fault that professionals have recognised this and are reshaping the mold as they cram more and more people under the diagnosis (as one of my son's doctors told me). Regardless, do my children deserve less and by what definition?

And, just to make things more antagonizing, I also am sometimes angered by "disability world" as I have trouble separating the relationship between accepting human diversity and preventing disability. I love my children and I think it's pretty clear that I treasure them and celebrate who they are. But would I drink alcohol while pregnant? No. Why? Because it is shown to harm the development of the fetus. Does this make me a hypocrite?

It's all so complicated.


Anonymous said...

You are to funny. You are too smart to be locked in your home.

Hang in there. And remember that reality is realitve.

GG said...

Bubba and Moosie sound like interesting kids. The kind I'd like mine to play with. :^)

You are so on-target with this post. There are so many opinions out there, and so much passion, as well. (I found your comment via one of the nastier blogs, I think you know the one.) Mostly, I try to direct my passion toward helping all my kids do well and be happy in their lives.
Looks like you are on the right track, darlin'.
Take care.

Ange said...

Thanks. It's challenging in general to be a kids have helped me grow so much...sometimes when I don't wanna!

Stimey said...

This is a really interesting post. It's giving me some stuff to think about.

Club 166 said...

I missed this when it first came out. Saw the link on the "local" list.

Great stuff!