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» Socialization for Those on the Autism Spectrum
Socialization for Those on the Autism Spectrum: The Value of Quantity, and The Bigger Picture
By Michael John Carley
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As the Executive Director of The Global and Regional Asperger Syndrome Partnership (GRASP), I certainly see a large amount of disagreement in the autism/Asperger world. But I also see a clear, unifying element that binds the parents of young children who span the entire spectrum: They worry how their offspring will merge someday into that greater collective that exists outside home. Amidst so many unknown variables to come—what experiences will occur along the way, what will we learn about the spectrum in future years—it is enormously hard to predict our children's future. This anxiety is true for parents of non-autistic children as well, but like everything else separating the spectrum from the neurotypical, this concern is significantly increased in our community.
Amplifying the stress is the confusing myriad of books and articles that are readily available on the subject of employment, dating, and socialization . . . how do we discern that which will work for our child?
As an adult who shares his son's spectrum diagnosis, I also see 1) far too little pluralism in how we both evaluate what is a successfully-integrated individual, and 2) an over-confidence in the approaches (including the good ones). Even the most well-known strategies can appear too self-assured, missing important variables and neglecting the underlying circumstances in the lives of our children and ourselves.
The trick, I think, is to approach the strategies with the idea of "quantity," not "quality," in mind. That we reduce our hopes that the one book we buy will work, and that we instead try strategy after strategy until the right one surfaces. Not only is this a better plan, but our capacity for disappointment and the ensuing discouragement will be significantly reduced.
Ability and Realistic Expectations
So long as a child has a healthy home life and an appropriate education, social development should occur. However such progress almost always comes at a slower pace than what the non-autistic world considers "developmentally-appropriate" and it is hard for many of us not to measure our kids' growth without comparisons to the children of our neighbors or family members. "Yet without these barometers (one might worry), how am I to set realistic goals for my child?" Indeed, we are operating in an arena where "success" is almost impossible to measure.
As one begins the search towards improving his/her child's capacity for socialization, there are many filters/additional questions that will play a role in determining what strategies to employ, and how to implement the chosen strategies:
• How much anxiety does the individual suffer in his or her daily life (which hampers our willingness to try new things)?
• What educational setting is the child in—mixed special education, all autism, bridge, inclusion, mainstream?
• Is the child a visual learner (like a Temple Grandin) or more inclined to think in calculations?
• Is the home life supportive and happy, or does the family dynamic feel overwhelmed?
• And most important as a starting point, a) how cognitively able to communicate is the child, and b) how emotionally and intellectually able are we to communicate back?
These will all play a part in how we learn to socialize and they are factors that the authors of even the best strategies cannot be expected to factor into their work.
So try everything, perhaps starting with these examples (NOTE: except where otherwise noted, developmental years are utilized rather than the physical age of children):
At a very developmentally-young age...
1. Before speech, getting an individual to express desires, such as wanting a glass of juice (whether it's through language, pointing or pointing at a picture), may seem like a one-sided transaction, but it's a start towards that ability to have a reciprocal relationship.
2. James Ball, EdD, BCBA-D advocates very specific (and clinically-written) goal-setting, such as "Johnny will imitate appropriate social interactions throughout his day, with the use of video modeling, 4 out of 5 times."
3. Carol Gray's Social Stories™, though old, are still used widely amongst younger children with great success. Gray shows how children, with adult help, can write their own stories about what happens in a particular social situation. Gray's website describes the process as follows: "A Social Story™ describes a situation, skill, or concept (using 10 criteria) in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format. The goal of a Social Story™ is to share accurate social information in a patient and reassuring manner that is easily understood by its audience. Half of all Social Stories™ developed should affirm something that an individual does well. Although the goal of a Story™ should never be to change the individual's behavior, that individual's improved understanding of events and expectations may lead to more effective responses."
4. Tony Atwood notes that children with no interest in peers still usually cling to the grownups in their lives. Therefore, those grownups are often afforded the trust where they can role model and play-act as potential friends to work on reciprocal conversation, taking turns, showing videos of how other children play, and how another person might react to an inappropriate gesture or comment.
At a developmental age of 6 to 11 years old...
Now we're at a stage that is more about refinement than architecture. The parent is trouble-shooting, and their role is now more rooted in reaction than prevention. More positive reinforcement is needed during this time as notions of alienation (i.e., figuring out that they're different) begin to creep into the youngster.
1. Reading and teaching Dr. Brenda Smith-Myles' "Hidden Curriculum" books can add a new, cognitively-aware layer to a child's social development. An often unnoticed component of Myles' books is that in addition to teaching them all the unwritten rules that everyone else instinctively understands, they also ease the youngster into comfortably becoming aware of why their spectrum diagnosis makes them somewhat different from their peers.
2. Look also at the work of Michelle Garcia Winner (during the pre-school-age as well). Winner invented the concept of Social Thinking, and bases her work on the idea that when we interact with people, we think about them.
3. This is the stage where clear interests have surfaced. Engage the child with others who share his/her interests by signing them up for teams, clubs, societies, or by organizing play dates with like-minded peers. The notion of a common passion as the best starter point for a friendship cannot be underestimated with spectrum kids. Otherwise, the incentive to socialize can feel (to use an idiom) akin to a policy of "all stick and no carrot."
4. Smooth any rough edges out of social understanding by delving deeper into how the other person's perspective might vastly differ from theirs. And that that's ok too.
5. And finally, once the child reaches the age of 10 (for girls) or 11 (for boys)—and this a "hard age," not a "developmental age"—they have to be taught what changes their body will undergo during puberty. No matter how challenged the child might be, if you think you've seen behavior problems in them already, you ain't seen nuthin' if you don't explain this stuff before it occurs. Our minds grow differently, but our bodies don't. Professional therapeutic advice should be sought in the case of most non-verbal individuals.
When they are developmentally-equal to teenagers...
1. At this age you'll need to modify the implementation of social skills curriculums to make them more fun—not that you didn't beforehand, but it becomes more relevant herein. Now the child is usually demanding to know why they need to learn the lesson at hand rather than just acting out of obedience. For whether they are 16 or 30, this is the stage when they are preparing to leave home, and they do this (sometimes with cruelty) partly by embracing that which separates them from you. This is especially painful if the child is nowhere near ready and he or she realizes this in their recesses, but can't admit it. It's a rough time enough as it is, and whatever you say can be questioned. So if incentive or reward is a part of the lesson plan, things will go much more smoothly.
2. In accordance with #1, gear the instructions more towards independence rather than relationships. We all have to be nice to people we don't want to be friends with, and this is the time to start teaching that.
3. Really refine the notion of the child's social expectations, otherwise known as "It didn't go the way I thought (or was taught) it would," with the added component of "and that's ok. It's not a disaster if someone doesn't like me."
4. If there's even remote interest, encourage participation in a theatre program or production as an actor. Theatre performance forces us to confront what our bodies are doing (onstage) and also helps with Theory of Mind issues in that when we play a character, we have to understand what they're thinking.
5. Explain the difference (without too much judgment) between what is an internet friend, and what is a face-to-face friend that you do things with.
Willingness, Happiness, and the Underestimated Value of Trust
We all need each other to survive. If you drop even the most anti-social person in the middle of a desert or an arctic wasteland, the first thing he or she will instinctively do is look for other human beings. Perhaps the most-challenged autistics would not. They might not feel how cold it is, sense any danger, and the reflections of light off the ice might keep them so entranced that they stay put. But the vast majority of us know that we need each other for survival.
Yet social interaction for someone on the autism spectrum is more exhausting than it is for others. To varying degrees, we need our islands of solitude throughout the day proportionally more than people not diagnosed on the spectrum. Furthermore, life on the spectrum usually means going through a plethora of people who don't understand you, and who inadvertently caused you pain. The litany of social banana peels that an individual may have slipped on over the years can take away our desire to socialize. Like anyone else, some of us reach our limit of unhappy experiences inside and something kicks in and yells, "I'm done. I quit."
So would it be so bad then, to not want to socialize as much as others?
I'm 48, married, employed, and a father of two kids (one spectrum one not) who I'd wager to say are pretty happy youngsters. I coach their baseball and hockey teams, I help my neighbors and I have a desperate need to be extra-close to the people I work with—many of whom I love. But are they friends? At the huge risk of offending them, isn't it those common connections or that shared goal that binds us, and not a developed friendship?
I like my wife's friends, whom she's known since high school. They can be fun to be around, and they're supportive in a tough spot. But I myself have very few friends, and I could easily have none because I don't really think I need them. I need the purpose of shared goals, and I desire more time with my family than most. But when I hear people talk about knowing someone since high school, as if the longevity of the relationship makes it more special, my immediate thought is "Why?" And when I hear other men saying "Oh no, Tuesday is bowling night with the guys," I think "Why?" (and my "Why?" is equal parts bafflement and criticism). Why do you all need friends?
Needless to say, I won't figure that out today. And before I had a steady job and a family, I needed what I then called "friendships" very badly. I share this in order to drive home the unavoidable fact that socialization is going to be different for us both in design and implementation. We need to get along with people in order to get jobs, boyfriends, girlfriends. As a coach I know how much better my players will execute if I can get them to co-exist in a positive manner. And this past summer, I didn't coach baseball but instead played on a semi-pro team. I desperately needed to be supported by my teammates and I desperately needed to know that they felt my support. And while I obviously have to be careful because I risk hurting the feelings of many by admitting the following: But if I leave that team, or this field of work someday, the probability is that I will not make efforts to stay in touch. I will instead work on developing relationships with those at whatever new field of work, or team, that I move on to.
I'm not alone. People on the spectrum as well as people off the spectrum engage others because we want something. But long-lasting friendships are time-consuming, and add more of the sensory, hidden curriculum, and sometimes executive functioning stresses that come with increased socialization.
One highly unrealistic expectation—that 99% of the autism world seems to erroneously rely on—is that happiness can be measured by the ability to communicate. Perhaps the happiness of parents is accurately measured somewhat herein, but it is unfair and strategically unwise to impose that on the child. As we all know, because of the spectrum's often-ridiculous diversity, we too often fight amongst ourselves (as an autism community) in a competition of suffering. And we too often fail to remember that our attitudes about our lives will play a far greater role in our happiness than the lives themselves. For example . . . Let's say there's some truly challenged adult individual who is non-verbal, lives in a home somewhere with a clean environment and a decent diet, maybe has a job to do (giving him purpose) and who enjoys staring at pretty colors in his off-hours. Is that person less happy than the Asperger adult who tests off the charts, but who fails in life because no one properly trained him in how to socialize, and is now mired in anger, anxiety, or depression? I don't think so. You always have to keep in mind amidst the failures that eventually it will be your child's desires for his/her future that will determine their happiness, more so than the goals you have set.
Our diagnosis is not something that we can look on with animosity if we're to grow up with any self-esteem. But things like anxiety, anger, or depression can be looked upon in a critical light, because they too often play a much more negative role in how well we fare than our level of ability, or where we fall on the spectrum. These three elements make our lives unhappy in a variety of ways, but mostly because they directly affect our ability to trust. Yet the reasons why they inhabit our lives are usually valid.
If you're a spectrum child, and someone proves to you that they don't understand you, then your capacity to trust that grownup is greatly impaired, and so you might not be open to listening to their lessons on socialization, or trust in their authority. Kids who grew up on "Just be yourself" back in the day (bad advice) quickly learned how little the grown-ups knew about how the world worked. This had nothing to do with whether or not we loved or needed those grownups—after all, we can love people we don't trust, and trust people we don't love—but I can remember one particular grownup who was trying to reprimand me for faulty socialization practices and was full of anxiety. I remember clearly thinking "If this person is such an authority on the subject, then why is he such a mess?"
Keep working, but stay loose, flexible, and open. We grow differently, but we do grow. How quickly and confidently is going to be more about the singer than the song.
Michael John Carley is the Executive Director of both GRASP, and ASTEP, and the author of "Asperger's From the Inside-Out" (Penguin/Perigee).