“Larger Questions of Labor: Reflections on Autism Caregiving”

I have to begin with the caveat that any research I did for this essay is purely anecdotal. I did read specific sources but did not ask permission of the blog writers to quote them, so I don’t feel comfortable referencing them in depth. And we have been traveling and doing summer things this month, so I am not being all that scholarly anyway.

As A gets older, he is displaying more mood swings, defiance, and recklessness. It’s been a summer of wretched tempests, elopement (the term used by behavior therapists when autistic kids run away rather than focus, or when they take off–while giggling, in A’s case–in public, scaring their parents witless), painting with excrement (TMI, sorry), and all this while he has been solidly engaged in summer school, camps, swim classes, and ample relaxation and play time. Gah.

A couple of people who have been there/done that have told me that it is par for the course with growing up autistic kids, and we must weather it. I can understand that; A needs his own ways to express his outrage, anger, fatigue, and sensory upsets.

It’s tempting to turn to further ABA help to address the behaviors, but some of the first person autism blogs I’ve been reading have almost stopped my breath with guilt. Almost without exception, the writers have come down harshly against the behavior modification approach, and how can we not listen when these are people who have the ability to tell us what it feels like to them? It isn’t pretty–some of the first person accounts describe ABA as torture, attempts to crush the autism spirit of the child, and ultimately, not conducive to teaching independence, but oppressed compliance, leaving the adult autist vulnerable to harsh caregivers who are accustomed to being obeyed.

What other way do we have, though? ABA has helped us create the semblance of sanity we hold onto like a lifeline. For the autism family, there is not much else to draw from, at least nothing that our insurance will pay for. And it is painful to say it, but if parents and siblings don’t feel a sense of hope and good cheer, it’s not like there are other people waiting in the wings, eager to relieve us. It is the stark truth for a great many families like ours. And let’s face it, respite care which isn’t provided by ABA-trained people is a helpful momentary relief, but it is a placeholder, and does not address the drawn out fatigue and sense of endless vigilance.

Having painted that bleak picture, I am happy to counter it with two uplifting observations–a) this last week of summer, which we have devoted to doing nothing but providing family time, attention, and fun has so far been immensely rewarding; and b) home-based ABA is so customized to the specific child and family that there is much good to be found in it. A’s therapists are like family to us, and they are always two steps ahead of us in planning how to make our lives more productive and hopeful.

The main takeaway for me is that as parents, we have to keep on soul searching. Not every structured plan is going to fit our individual kid, and that’s something we have to be willing to negotiate constantly. And of course, the bar keeps getting raised as the kid gets older.

I am really glad that we have first person accounts to draw from too. They make me uncomfortable, but that’s a good thing. We should have a fire lit under us so that we never stop asking ourselves if our kids’ wellbeing is always the highest priority. We should question how much we expect autistic people to contort themselves to fit into social norms, and how much we can accommodate their natural expressions of themselves.

At least for A, I can see that in essentials, he will always exhibit obviously autistic traits, so we wouldn’t want for him a future where, no matter how hard he works to conform, his efforts will be seen as inadequate. What will all the ABA have been for then, if we don’t also throw our efforts into shaping a microcosm where who he is is just fine. Maybe part of OUR stress as caregivers is how much we contort ourselves too. We have to be part of the new order if we want the future he inherits to be inclusive and meaningful.

The other day, A was standing on the stairs, laughing excitedly because we were all going out. He watched us gather our things and put on our shoes, and joy bubbled up in him, so he twirled, and he lifted and lowered one shoulder, which is one of his happy behaviors. Then he grabbed his sister and howled with delight when she picked him up. It was such a perfect expression of joy, and made me question myself–if we are so encouraging of his happy sounds and actions, why aren’t we as accepting of the upset ones? On the surface, the answer is obvious. No one wants screaming and physical outbursts to be any sort of norm in their house. But A uses other means to show his less sunny emotions–he peers through his fists, shudders, hugs in a somewhat aggressive manner, seeking comfort but not expecting to find it until his mind has calmed, and he uses vocal sounds that are just shy of screams. Those are and should be let alone.

That said, I am going to put this out there–the way that state funded respite care service is set up in New Jersey is not functioning well for our individual circumstances. Maybe I will develop this idea further at some point, but I honestly don’t feel up to the task at present.

Happy Labor Day weekend to all my American readers. And Happy Ganesh Chaturthi to those who celebrate. May Ganesha remove all obstacles that keep special needs families from a full participation in the world around them. Here’s to empowerment, optimism, and effective advocacy. That is truly the labor that lies before us.

Radha.