Sunday, May 10, 2015

Not Just a Bike Ride

Something happened today on our bike ride, said S one recent weekend evening.

It was a clear day; we were on a nice path. M was ahead of me. (M is our son, 12). He was on one side of the trail. It was mostly us. 
Then I saw a couple far away, walking towards us. They were walking… differently. They sort of walked away from each other, to opposite edges of the path, then came back and met at the center. Then they did this again.
You know, M is pretty good at navigating. Still, I tried to bike faster, to get closer. I was still behind when M reached them. He rode in between. It seemed a bit close, I couldn’t tell. M was startled, stopped and looked back, they were startled and stopped. I apologized. They were nice; they laughed it off and went on their way.

Incidents like these worry me. We can say, oh, it’s autism and move on. But what was protocol there? What would anyone do? If we ask, what happened there? -I’ll have to take you inside an autism mind (as much as I know).

Please sit back, relax and fasten your seat belts.

The couple was walking in a pattern. M saw that. He adjusted to manage through the pattern, like anybody would. I’ve seen him navigate his bike carefully around baby ducks, moody geese and toddlers on tricycles or wobbly feet. He slows down, watches and waits with interest. 
A bike, a scooter, a swing, a trapeze- are like extensions. The extensions are far more controllable than his own body’s sensorimotor mechanisms. He loves the extensions, the grace and the freedom. When on them, he is a different person.

The couple had a pattern and then- maybe changed it suddenly when he came closer. Most of us might expect that- we would see that it is a couple doing some lovey thing; they would pause that and give way. We might prepare to take that way. From M’s action we might say that he expected the original pattern to continue. Did he?

I don’t know. I also don’t know if the couple’s pattern indeed changed. What we know is that he was startled by something he didn't expect and paused to check. And that the couple was startled. 

One can’t prepare for every scenario. But if I explain to him this scenario, the next time might be slightly different. If dad was closer and reminded, hey, watch out, the people ahead might give way on our side, he might have integrated that into his response. 

It is so easy to assign a low/high expectation by saying- Oh it is autism. Many do that- they don’t see the person but only see through their expectation of behaviors. They can’t integrate the two. They outright reject one stream of observations and thoughts.

It seems all about that - integration of different directions of thoughts. Yes, an autism body/mind seems to have difficulty in this real-time integration. We can’t imagine what it is like. Different thoughts here are- unusual pattern, a couple, lovey, right of way, etc. How many of these thoughts are integrating at a given time, forming a mind-response, which a body’s motor system is capable for acting on, propelled by intrinsic self-worth and motivation- is key.

This integration and execution can vary with the autism- given that there are different autisms out there*. It also varies with stress, anxiety, and familiarity. (This variation happens to all of us on a much smaller scale. Or, say, when in shock, we can’t fully process what we’re seeing). I’ve observed this integration for us also varies a lot with movement, quietness and agenda - whether M is sitting down or moving about, where we are and what the agenda is in the setting (and then, whether he is on feet or an extension). This is rarer in autism, making it all the more difficult to explain to others.

Sometimes, at times of stress or sensory overload or state-of-day or even by habit, one thought might take off like a runaway train. It may result in some off-beat action or even gather into a meltdown. This is one of the many pathways for a meltdown.

So when M is tired, I do the preemptive prompting- I scan around for high stressors, get a feel for nonverbal body language and say something- before a thought might take off. The loud song is going to end in a few minutes. The waiting isn’t going to be more than ten minutes. We are not going on the ride you see there (he doesn’t like amusement rides).

This eliminates the uncertainty and some anxiety. Because an autism body-mind is always working so hard, especially in novel situations, even a small help can go a long way in staying integrated. When the world is seen differently, when the mind-body responds differently and without the aid of full range of communication, just imagine what a particular vulnerability can do.

That’s why having an aide or a counselor can make such a difference. Having a trained and willing aide makes a big difference in ability to integrate, stay together and participate. This general functionality base increases with time. To the ideal point of not needing an aide, for some.

Then there are- some experts- who say that not being able to put forth an integrated response in real time is proof of not having the different thoughts at all. And with this, they seek to control the autism habitat while extending this opinion into the future. They can’t seem to integrate the incoming range of information into their own knowledge. Some change their base with new data, some don’t. Their ideal remains neurotypical or near-normal functional behavior and a person of autism is judged only by how close they are this normal.

There are those who see and yet don’t see the need for this integration. They protest if a caregiver says- Oh this activity is hard on my child at this time, we’ll try something else. And insist, excitedly, but, I tried this with X the other time and he wasn’t sure at first but loved it in a day! Suggestions are always good, but not taking maybe-not for maybe-not can be stressful. The thing is- when you know a person with autism, you know one person with autism. Some commonalities do exist but much caution is needed while extending them. 

I believe each person’s integration-base is different. A primary caregiver’s input as to how much this fragile base can be challenged at a given time- is key for stability. And not to forget- a primary caregiver for autism is likely operating from a base of fatigue- he/she may not be able to put forth a well-integrated argument in real time in requisite tone.

I worry. I worry because A. With autisms so poorly understood, what will happen without the advocating of a parent? It is so easy to say that something is an autism-based behavior and not give benefit of trust. Especially in difficult phases. Then there’s the thought of those who don’t have advocates at all. B. We remain dependent on the kindness of strangers to allow for deviations from normal. There are always going to be rushed bikers or walkers who feel they own the trial (we try hard to go on non-busy trials or slow, park trials).

One thing that is abundant in our autism- a blessing- is the ability to suspend continuous integration of thoughts- a bane of the normal mind, and live in the now. Here is ours



*Autisms - as in physiological states currently being discovered, not psychological criteria.