Autism: Finding Out
July 30, 2010—Not long ago, I was speaking with my son’s teacher from third grade, Melissa Spence, about the special diets some parents feed their autistic children and she remarked that it was a lot more common in the earlier grades than in hers. We agreed that it was one of the things parents tended to do soon after their child was assessed and less so later on.
That got me thinking about my own experience learning Christopher was autistic and what that first year was like. Looking back, one thing became abundantly clear: ‘finding out’ was much more a process than an event.
The point was driven home not long afterward when Mel (as she prefers to be called) asked for my help with an assignment for a class she’s taking—Mel got her degree and credentials at Boston College, but she’s having to retake a few classes here in L.A. and I’ve become her go-to parent when input from one is required. In this case, input took the form of an interview conducted by email. When I was done, I realized it was a pretty good account that first year and my process of ‘finding out.'
How did you find out about your child's disability?
My son was in day care with another child who was on the spectrum. He was about 3 and half years old at the time. The case worker from Regional Center came by to visit the one child and saw my son flapping his hands. She gave the woman who ran the day care her card and asked her to pass it along to us. I called her and, without dancing around what to her was obviously true, she suggested we have him assessed by the school district. We scheduled an appointment and he was examined by a group of psychologists, therapists, and behaviorists.
What support did the professionals that diagnosed your child give you or direct you to?
Other than scheduling hearing and motor skills tests for him and telling us to contact our Regional Center, zero. And as far as counseling and support for parents, a complete vacuum, practically a boot to the behind. They weren’t unkind. They were completely sympathetic . . . as they showed us the door.
What support would you have liked to be given at that time?
Good heavens, where do I start? What sort of support do you offer someone who’s experienced a major trauma? If someone told you their child had just died, what would you recommend? Counseling would be a good place to start or, at the very least, a suggestion that we might want to seek some sort of counseling. Direction to and connection with parental support groups, books to read, websites to access, organizations to contact. On the whole, our society does a passable job of recognizing and treating trauma. The failure here is recognizing that being told your child is autistic might actually be traumatic.
One other thought: I’ve always believed that it would be enormously beneficial for the parents of kids on the spectrum to meet and talk with adults on the spectrum. How better to understand what their child’s world is like than to ask those who live there?
What supports are you getting now and what other supports could you use now?
For all their seeming lack of sympathy and support in the beginning, LA Unified School District has been outstanding in helping my son grow and learn. They’ve provided him with an AAC (Augmentative and Alternative Communication) device that is changing his life. The levels of care and expertise demonstrated by the staff at his school are beyond amazing, especially considering the shrinking resources they’ve been saddled with.
We did use Regional Center to find and employ some behavioral intervention in connection with eating issues he was having. It took a mere eighteen months from the time I put in the request until he had his first session. Like clockwork, it was. The behaviors we were requesting assistance for changed three times from the time I put the request for funding and the approval.
One area that could use improvement is basic human services: doctors, dentists, hair dressers, all the things you take for granted. Now, I’ve never been turned away by anyone once I explain that I have a special needs child; they all claim to accommodate autistic kids. But they don’t really get what that means, that term Special Needs, and the reason I know they don’t get it is because not a single doctor or dentist or any facility has ever followed that claim with the question, “What do we need to do in order to accommodate your son?” In their minds, accepting special needs kids as patients/clients is accommodation.
So when I tell them, “Alright, I have to tell you that my son doesn’t do waiting rooms. That three o’clock appointment? If we’re not out of the waiting room and being seen by someone by 3:07, there’s a high probability he’s going to melt down. It will be very unpleasant. Things may be broken. We’ll probably need to reschedule.” That’s always followed by an uncomfortable silence as if to say, “You mean we actually have to change how we do things?” Hello. Special Needs. It means something.
So some sort of training with a special needs certification issued upon completion should be made available, not just for professionals but any business that wants to know what to expect and how to deal with kids on the spectrum; that would be just outstanding. I’m not holding my breath.
How have your needs for support changed since the original diagnosis?
As I’ve studied and found resources on my own, my support needs have decreased and by that I mean that, other than school, we don’t use anything specifically designed for children or parents of children on the spectrum. We’ve created our own little program, lists of does and don’t’s, places we can and can’t go. His mother and I are the experts when it comes to my son and, because of the individualized nature of ASDs, that’s pretty much the way it has to be.
How has your life changed as a result of your child's disability?
You know, I don’t want to be a jerk about this but I can’t possibly answer that question without knowing how my life would have been with a neurotypical child, can I? I’m not a big fan of speculation and fantasy. I’m raising my son, not some child my son changed into.
Or maybe the problem I’m having with this question is that I don’t view his condition as a disability, merely a difference. He didn’t suddenly change when my understanding of him grew to include how profoundly different he actually is. Neither did I.
Now, of course, I’m contradicting myself. I did say finding out was a major event, traumatic was the word I used. And it was traumatic, but upon closer examination that trauma turned out to be hollow; it had nothing to do with either one of us and everything to do with ideas and attitudes coming from the outside. Once I calmed down and got back to focusing on him instead of ‘The Autism’, we ended up exactly where we had been in the first place: Father and Son.
Parenting is a process of learning and growth for both parties, parent and child, and that’s true whether we’re talking neurotypical or neurologically atypical. I haven’t met a parent yet whose kids turned out to be the people they thought they’d be when they came down the chute. Autism or no, I was never going to escape that fate. And there it is.
To address the question a little more directly, the assessment wasn’t some sort of demarcation line in my life. I was raising my son before we got the news and, after we got the news, I went home and continued to raise him. Next question.
What has been or is your biggest frustration?
All the media attention paid to ancillary subjects (read: vaccines, diets, Jenny Whatsername) and not enough to the enormously difficult task of helping people understand what autism is and what it isn’t. Here’s a thought: how about putting a non-savant on television? That’d be new and different. I’ve actually thrown things at my TV.
What skills do you want your child to have before they complete their education?
Again, you’re not going to like this answer much: I’d like him to have whatever skills he’s capable of having at whatever levels he’s capable of reaching. And no one—you, me, him, the medical and therapeutic communities—can state with any certainty what those skills and skill levels will be. I believe I’ve already mentioned how I feel about speculation.
What are your hopes and dreams for your child's future?
Continuing from the previous question: One of the things that dawned on me as I went through the process of calming down in the months after my son was assessed was the idea that hopes and dreams—expectations is a good blanket term—these were now, for me, a sucker’s bet. What with the lack of any sort of concrete knowledge surrounding ASDs along with their unpredictable nature, it was clear that calculating any sort of future outcome for my son would be a total shot in the dark. Would he ever speak? Would he ever get out of diapers? Would he ever be able to understand abstract ideas like money, emotions, the weather? Expecting those things to happen was a recipe for disappointment and that disappointment could only have a negative impact on my son, myself, and our relationship.
So I found myself in the odd position of having to hope for the best while not allowing myself to speculate about what the best might be. In other words, hope without expectations. Good luck with that one. I developed a mantra: I will cry tears of joy on the days he makes progress but no tears of sorrow on the days he does not. It is absolute and complete acceptance: my son will be who he’s going to be and I will love him, whoever he turns out to be.
That said, my overall goal (that’s a nice, emotionally neutral term) is to do everything I can to help him to become a happy, self-sufficient human being.
And, in the end, isn’t that what every parent is doing?
July 30, 2010
