I ended a post a few weeks ago with this cryptic statement: "How we deal with various situations ranging from misbehavior to achievement is dictated by this difference. There is too much to discuss on this topic to include in this post, so I will leave it with this brief statement, and discuss it further next time I write..." It is the literary equivalent of a cud - I just keep chewing on it and it never really changes.
And then tonight I was reading an excellent post by one of my favorite fellow Dad bloggers - VAB at Autista, and the last sentence in his post kind of summed it up for me and set the ball rolling, if you will. The sentence read: "I'm left wondering whether or not MK should want to do anything about it at all, and if he did, whether there is anything that he could do."
And that seemed to set everything into place. The issue I want to get at could be summed up as this: At what point does our responsibility as a parent become overshadowed by our child's ability to behave a certain way? Is this not perhaps one of the most enduring dilemmas any parent of a special needs child will face? Regardless of how one's parenting style plays out, this is an ongoing process that must evolve on an almost moment-to-moment basis every single day in order to have the best chance at a positive outcome for the child.
It entails decisions such as this:
...If my son is spinning in place in a grocery store and blocking an aisle by doing so, is he:
- Providing himself well-needed sensory regulation, in which case I should be proud of him for successfully using a valuable lifelong skill (autistic tendency);
- Interfering with other shoppers and needlessly risking injury by becoming dizzy and falling down (the parental concern);
- Pretending to be his favorite character, Harold the Helicopter, who is saving the Island of Sodor after an awful storm (5-year old behavior)?
...If my son insists on playing in his room, by himself, while a family with like-aged children are visiting, is he:
- Allowing himself a well-needed break from the action and "decompressing" in a positive, productive way by playing with his trains and talking to himself using familiar, scripted speech (autistic tendency);
- Being overprotective of his favored toy - trains - by ensuring that he watches all of them and keeps them far enough away from potential intruders that they will be safe (either autism, personality trait, or one being influenced by the other - who knows which?);
- Blithely unconcerned that other kids are there to play with him, and therefore must be encouraged to join the fun or will remain alone for the duration of the visit(is introverted, may be related to autism or may not);
- Is a spoiled child who emphasizes possession and dominance of his toys over sharing with other kids (parental concern)
- Is actually pretending to be The Invisible Man, and each moment that goes by without his being "discovered" is a successful minute! (5-year old imagnation at work).
So what do we as parents do - encourage his imagination? Succumb to the peer pressure of having our son "successfully" play with the other kids? Assume he is spoiled and take away some trains to teach him a lesson? Understand that he is neurologically different from the visiting kids and allow him unlimited ability to isolate himself?
Dilemmas indeed, aren't they?
Much is made among the ND community of understanding and accommodating the behaviors related to the autism label, and for good reason. It has been of great benefit to me to gain first-hand perspective of what may (or may not) motivate a given individual to behave in a given way. However, as the parent of a 5-year old son, I need to draw some boundaries. The major conundrum is trying to determine when I am dealing with a 5-year old behavior and when I am dealing with something else (such as sensory integration problems or movement disturbances brought on by stressors that I cannot necessarily anticipate or perceive). And to put it that way - as one or the other, black or white, is an obvious fallacy according to just about any parent or any autistic person I know. It's just not that simple.
When I sat with the diagnosing psychologist 2.5 years ago, and she informed me of the autism diagnosis, do you know what my first question was? It was this (something the doctor said she had never been asked before immediately after a diagnosis): "Considering that he is autistic, is there an increased chance of other problems such as anxiety or depression?" The only reason I remember this exchange is her response, which went something like this:
"Well, that depends. If your son is of below-average intelligence - if he has mental retardation in addition to autism, then the likelihood is very low. On the other hand, if he is of average or above-average intelligence, which is the case with many autistic people, then he definitely has an increased chance of anxiety and depression. The reason is because he will know that he is different. You see, it is a double-edged sword."
So where that leaves me is that Jason, after a few years of development, is definitely not mentally retarded. He in all likelihood would receive a "lighter" diagnosis now than when he was originally diagnosed in 2004 and followed up in 2005. Both times he received the "classic autism" Dx, but has changed a lot in the ensuing months and short years. These days, a casual observer would be hard-pressed to guess that Jason is divergent from the typical kid. Sure, any of you would know it right away, but Joe Public in the grocery store? Not likely.
This convoluted path of information is actually leading somewhere. Since Jason is one who, at least at age 5, is not obviously autistic to the casual observer, guess what that means? Yes - increased expectations of "normal" behavior. And we, as parents, have the responsibility (and we are thankful and happy to do it) to make sure that Jason successfully walks that fine line between being true to himself and whatever that means in terms of his neurological differences and being able to function well in a society which has many prescripted scenarios which require deft social skills and just the right kind of sensory awareness to successfully navigate.
For those people, either autistic individuals or parents, who may be thinking, "Quit complaining, as your kid clearly has fewer obstacles to success than me or mine", I will not disagree with you. But this post is not about degrees of difficulty - it is just about Jason and his specific situation. I respect the hell out of that boy for the hard work he has done to grow and develop, and I thank God for blessing him with a patient and angelic soul to help him deal with his challenges. I only hope that my wife and I can successfully resolve the dilemma of attributing Jason's behavior on any given day, 100 times per day, to the right source: his age, his Jason-ness, or his neurological differences.