Swamped by the Spectrum: Little bites by Autism on Siblings & Parents

A course I offer every other year is Political Violence. The course is a survey of approaches to understanding why certain acts count as violence, its political uses and consequence, and how to address. It does not cover autism and violence. Maybe it should. We were unprepared for the type, duration, and intensity of violence that issued from our special Aspie. He was a biter and hitter with the occasional full-strength push and Bruce Lee caliber kick thrown in for variety. We often felt swamped by the violence we and his sibling experienced.

In what follows, I begin with observations from a recent community service project in which my kids and I participated. I then offer a brief overview of how the violence effected our family and others including how we sought to assist our son to develop socially appropriate responses. Of note, is how the slow pace of communicative development our son experienced may have contributed to his resort to violence. He simply had no other way or comprehension of how to communicate his feelings. Throughout I attempt to note how his sibling, our sweet pea, was affected in an effort to introduce the effects of autism on siblings.

In a previous post, I mentioned my kids and I assisted with an Eagle Scout service project to repaint a rocket play structure at a local park. There is a tall, long, wavy slide on one side of the rocket play structure that my kids absolutely enjoy. At the top of that slide is a protective hood that extends from the rocket structure, out over the slide, about three feet (1 meter). The hood is painted red while the sides and underneath of the slide are painted white.

I was on a ladder, on one side of the slide, precariously balancing as I attempted to apply a new coat of red paint to the hood. My kids were beneath and to my right generously slathering latex white paint on the underside and sides of the slide in addition to their…well…entire person. No other way to pithily describe. Just, use your imagination of two kids who looked like a Jackson Pollok painting done in hues of red, white, and blue.

One of the lessons from parent child interactive therapy that I failed to mention in a previous post is the necessity of positively reinforcing desired behavior. Seems obvious. It was to us going into PCIT. What was not obvious was linking the positive reinforcement to specific behaviors for which kids on the Autism Spectrum lack natural or innate capacity to exhibit / perform. In effect, PCIT trained us how to parent a child on the spectrum. And we needed that training, especially the parent also on the spectrum – yours truly.

I noticed that my special Aspie son was working well with his sibling as they painted the underside of their favorite slide at, what they referred to as, the rocket park. A major emphasis in the weekly social skills group therapy sessions my son attends, is compromise. He was compromising with his younger sibling as they worked together to get more paint on the slide than themselves. Accommodating her in the routine of painting the slide. Progress! Social Skills Group therapy was working.

Following my PCIT training, I positively reinforced my son’s use of compromise and for working steadily to complete his assigned task. Pains me to admit, did not cross my mind to do the same for my youngest. She is so dependable and consistently kind that I just assume so. Bless the heart of my youngest, she spoke right up and reminded me that she was likewise compromising and working steadily to complete her assigned task. I thanked her for reminding me and proceeded to positively reinforce her effort and application of that important social skill – compromise.

I returned to my assigned task and with each stroke of the paint brush on the slide hood, my mind scrutinized the social dynamic between my kids and I in which I had been a participant. Obviously, I have young kids and I am still learning to parent. They did not come with instruction manuals. I often fall back on my training as a social scientist. A research method that social scientists employ is known as participant observation. This method was developed by cultural anthropologists for the purpose of gaining first-person cultural knowledge and understanding for non-native culture persons. The literal idea behind this research method is that one goes native to understand and develop knowledge of the natives.

In that moment at the park, repainting that hood on the slide, my training in participant observation initiated subconsciously. The little social scientist in my brain, operating in the background of my consciousness, recorded the social interaction with my two kids, and then replayed for the social scientist to analyze in my conscious mind. I realized that my little sweet pea gets swamped by the spectrum. How she copes with that spectrum deluge is to assert her place in our family. So much of our parental attention, energy, and focus is directed toward our son, we run the risk of not providing the needed, desired, and hoped for attention to our precious sweat pea. My heart ached for her.

When sweet pea joined our family, my lovely wife selflessly gave up her sugar mama role, and supported my career aspirations by committing to be the stay at home parent until our youngest started school full-time. Those were especially difficult years as we switched roles and the house routine changed more to my wife’s way of doing things than mine. In our ignorance of our son’s condition, we had no idea the toll it would take on him, us, and sweet pea.  To be fair, at this stage, we — my son and I — were undiagnosed.

The introduction of sweet pea to our family, the switch in adult caregivers, and home routine, led to some behaviors on the part of our Aspie that were expected yet unexpected. We expected that there would be an adjustment period to the change in what was his normal to a new normal. What we did not expect was violence and the length of duration and intensity of that violence directed toward us and sweet pea.

We had to protect sweet pea from our Aspie for at least two years. Our son was not at all happy that mom was now home, a new routine was being implemented, and expressed this unhappiness in the only way he could, given his slow communicative development: violently. Communicating with him was frustrating for us and him. At least, our Aspie was an enthusiastic and equal opportunity biter and hitter. Shoot, he got kicked out of nursery at church on several occasions. Who gets booted from church nursery!? Honestly? My Aspie kid. That’s who.

In my ignorance of his Asperger’s condition at that moment, I didn’t know whether to be proud he was the nursery tough or concerned and sad about his treatment of others in his 18-month to 3-year age group, let alone his family. To be fair, that nursery was a wild bunch, lord of flies and all of that. My little guy may have just been defending his turf, person, and because he was different, an easy mark for the other kids and nursery leaders who had their favorites.

Favorites that happened to have some sort of familial connection. I know, because after he got booted the third time, I went in to “help” and I gained first-hand knowledge of that nursery and its “leader/s” – bless their hearts. (I learned living in the southern United States, that you can say anything bad about anybody so long as you follow it with, “bless their heart.”) All of this is to say, every member of our immediate family and those in church nursery, experienced his teeth, fists, slaps, kicks, and pushes never knowing how or why we were so privileged to be on the receiving end.

Not until speech therapy began, at age three and a half, with his capacity to communicate rapidly improving as a result, did we begin to experience a slight reduction in violence. My lovely wife tenderly and patiently worked with our Aspie, practicing how to be soft in touch, tone, and general physicality. I also was supportive (pat myself on the back!) reminding our special Aspie to be soft and, following my wife’s lead, demonstrating to him how soft felt and what it meant.

We would take his hand in ours and softly pat his leg with his own hand while we repeated ‘soft’ multiple times. This was a painstaking process that we did consistently for years to accomplish enough understanding on the part of our son, that we could be reasonably confident in his treatment of sweet pea, us, and others though, never out of our sight.

Fast forward a couple years, through social skills group therapy our son is developing the skill to play with others in socially appropriate ways.  Very rewarding it is to observe that all the parental and therapeutic energy, attention, and effort is working for our son. In short, his unpredictable reactions to change are becoming less intense, more logically thought out, and presented by him. Especially toward his sister for whom we fear less about the physical harm she may experience.

Emotional? Well, that is going to happen occasionally between siblings. She just wants to play with her brother and this is where the social skills group therapy has benefited our son, he is more willing to compromise. Challenge for us as parents is to minimize the emotional effect on our sweet pea. We do this by having special time independently with each child. As a father, I try to make a connection with each child every day. We continue to coach both siblings in how to respectfully, politely, and kindly play with each other.

Timing, however, is crucial. If sweet pea and our special Aspie begin playing together few if any issues arise. However, if sweet pea attempts to join our Aspie in his play after the fact? So much for compromising. The Aspie brain just does not work that way. Meltdown is imminent and sweet pea usually on the receiving end of some type of physicality though, these days, physicality that generally does not rise to violence.

Compromising may be more negotiation than an Asperger’s is perhaps capable at any given moment. We just never know. Often, the compromise begins with our Aspie son dictating the terms to his sister, his sister protesting, they argue over the minutiae of compromising at that moment, then with whatever parent enters the fray due to hearing a sibling squabble. Our sweet pea, once the parent enters, generally keeps quiet. Of course, I am not sure she would be able to get a word in so focused and determined is our Aspie son to explain his version before the parent resolves the squabble, and defending his ‘right’ to do so by claiming, “You’re not listening to me,” or, “Stop interrupting me,” usually directed toward his sibling with unregulated emotion that sweet pea gets swamped, saying nothing. We know going in that a meltdown is imminent.

We steel ourselves for that inevitability and end the activity by confiscating whatever object/s the kids were squabbling about. I know this may reek of injustice to our son, who did not ask his sister to join his routine, and change the routine to accommodate her inclusion. But, parents aren’t interested in justice, we’re interested in resolving the squabble so we can return to what we were doing. Ironically, with an Aspie, we’ll have to first traverse the ragged, jagged, and treacherous meltdown wasteland before some resolution is achieved.

This approach has the added benefit of reinforcing to both kids that compromise is the primary social skill in any social relationship. Even if a classic Aspie meltdown is inevitable. Let him have the outburst, give him something to chew on (see this previous post on fidgets), and wait for it to end. The meltdowns always do. As parents, we are willing to pay the meltdown price, to assist the social skill development of our kids, whether in public or privacy of our home. Hell with judgments of others or feelings of embarrassment. They don’t walk in our Asperger’s multiplied by two shoes. They can kiss my cheeks and I don’t mean the ones on my face either.

Yet, I want to note that in these situations, I would estimate that most of are parenting is directed toward our special Aspie. I worry about how much the spectrum swamps my capacity, on two dimensions, to be the father my neuro-typical child needs and I worry that she will develop resentment toward her parents for their having more parental focus on her brother. Getting swamped by the spectrum means the sibling may get less attention, energy, and focus than what they deserve from their parents. What a terrible price to pay for my little sweet pea.

I wonder if this is why my sweet pea, will go to some lengths to get my attention? Including giving me an on-the-basketball-court-quality elbow to the back of my leg as she walks by on her way to wherever she is going in our cozy home. Stopping for just long enough to turn around and see if I noticed, give that cute little mischievous look, and giggle at my surprised bewilderment as she recognizes she got her old man.

When sitting on our couch, in full Asperger’s hyper-focused glory, she’ll do the same, with those sharp little elbows inducing a sharp pain on my chest to get my attention and without saying a word, pounce in my lap for some special daddy cuddle time where, for a moment, rather than being swamped by the spectrum, we swamp each other with our love. In the end, that’s all I can do as her parent. Make sure she knows, daily, that I love her, want her safe, and happy.

This past weekend, I ordered some books, written for kids on the spectrum and for their siblings in the hope that some understanding of how Asperger’s effects our family may begin to develop for my special Aspie and little sweet pea. Knowledge is power. I need to empower my kids. In a future post, I’ll report on how the books are working.

What strategies do you rely on to address the Autism Spectrum child – neurotypical sibling relationship? How do you manage to balance parental energy, focus, and effort between your children? Is this too idealistic?

Look forward to your comments.