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| Image credit: Photo by Meredith_Farmer on Flickr Licensed under Creative Commons |
When my son was two, he was not speaking, and our pediatrician gave us a series of referrals to begin the process of having him "evaluated." Since speech delays can be caused by hearing loss, we made a trip to the nearest children's hospital, the only place in our area with facilities and equipment for testing the hearing of non-verbal children. We filled out reams of paperwork about my pregnancy and his development up to that point: Were there any complications during pregnancy? What was his APGAR score at birth? When did he first sit up? crawl? walk? wave? Austen sat on my lap in a special room with mechanical toys that would light up and move if you looked toward a sound. I tried not to move and cue him to the beeps I heard or the sound of the examiner calling his name.
When (as we had expected) no problem was found with his hearing, we spent hours filling out reams more paperwork with all of the same questions (and more) all over again on new forms. A psychologist interviewed me by phone about Austen's behavior. "Does he make eye contact?" she asked, "Does he engage in any repetitive activities? Does he bang his head?" And I seethed with anger. I knew where she was going with this; she hadn't even met him and already she was trying to stuff him in a box and slap the autism label on him. How could that label possibly fit? It left out so much about who he was.
After the phone interview, we took Austen in to meet a team of evaluators. Mark and I sat in a hard plastic chairs in a room full of toys, watching psychologists and therapists ask Austen to play with the right toys the right way and point at the proper pictures. It was grueling. They were all very nice and friendly, and they seemed genuinely entranced with our son's cuteness, but it was their job, not to focus on his strengths, but on what he couldn't do: to measure his deficiencies and stamp him "defective, needs repair." I looked at him playing and saw Austen being Austen; they looked at him playing and saw something wrong with him.
I tried to silently will him the answers. "Come on, kid. These people think there's something wrong with you, show them they're wrong." And time after time, he'd just completely ignore the question. I'd watch them mark their papers; another strike against him. "I know he knows what a ball is," I'd plead, as if all his future happiness and mine were riding on him knowing that and on them knowing that he knew. "We have to score this based on what he answers," they'd say.
I knew he was not doing what typical kids were. I knew that whatever we were doing alone didn't seem to be enough to help him navigate the world. Yet here I was pleading with the examiners to give him the good score that would disqualify us from help, because if he got a bad score, they would slap on that label they were dying to stick to him: autistic. Then no one would see my beautiful son Austen anymore, they'd see "the autistic kid" and everything about him would be interpreted through that lens.
And I could see the label distorting the perceptions of the evaluators already. When Austen entered a large open space and spun around until he fell down (something he does much less frequently than I did as a child), the evaluator said, "Oh, lots of kids on the spectrum spin like that." (Lots of neurotypical kids do too.) When Austen walked into a new room and stood on tip toes, craning his neck and inching forward to see a train (his obsessive interest at the time) on a shelf high up in the room, an evaluator said, "Ah, he toe walks." (He doesn't. Ironically, he was displaying a different autistic trait: doggedly pursuing his specific interest.)
What if, years down the line, his kindergarten teacher or his fourth grade teacher or his high school gym teacher his saw "autistic" in his file? Wouldn't they do the same? Misinterpret his behavior? Not see him for all he is? Not see him as an individual? Not help him learn all he needs to know? Because autistic sums it all up. Game over. Case closed.
It was around this time that a friend of mine, whose son is also on the autism spectrum said gently, "You know, the label doesn't change anything. It just allows you to get Austen access to help he needs. He is still the same beautiful child you love. Nothing about him is different."
"But," I protested, internally, "The way the world sees him will be different." It took me a while to see that he is different, and the world is going to see him that way no matter what I do. It's not like his teachers and peers don't notice that he's eaten the same thing for lunch every day for three straight years. It's not like they haven't noticed his literal thinking and obsessive rituals or his distinctive speech patterns and intonation. There will always be labels and labels will always be limiting. If I didn't choose a label for him, the world would anyway, and the world tends not to be kind in its labeling. I could choose to let others decide he was "stupid" or "bratty" or "disobedient" or "a freak" -- or I could accept and advocate for "autistic." The world may throw those labels at him anyway, but at least we have a label of our own, however imperfect, to act as a starting point for understanding.
I have quite a few labels written on my own forehead in Sharpie. Took me a long time to get used to them. Finally, I realized that whoever doesn't have a label stuck on their head, simply doesn't have a label stuck on their head yet. There is an entire industry hell-bent on putting Post-it notes and sharpie marks on people's foreheads. IMHO, your friend was correct, as annoying as the labeling process is - the label sets one free b/c it guides one to the best resources for their unique needs.
I'm not going to pretend that I know what it is like to go through the diagnostic rituals of letting doctors find out what is "wrong" with my child, rather than seeing what is "right" with my child. I worked with special needs kids for a long time and I saw how the process works, but not with my own child. I do know this though: we all have a label over our hearts. Austen's says the same thing everyone else's says: "My name is__(Austen)___ and I am a unique person, just like you. Isn't that great!"
Much Love to you and all the unique and darling members of your family,
-Sophie
There's a little piece of a song my kid came home from church singing: "God gave us families to help us become what He wants us to be." It's not just parents helping kids become the people they are supposed to be, but children helping their parents become who we are supposed to be.
Thank you for writing about this so clearly...
My son is going through the "labelling" process..."severe challenges in visual processing", etc.
All the best
mc
My grandson, who won't turn 3 until June, is now a big NASCAR fan - he loves watching the cars drive around and around. Naturally my son, who cried at the diagnosis, doesn't allow him to watch this too much.
But, who knows what his mother lets him do when he's with her...
Such a touching post, MPJ. You really hit the nail on the head with this one. My brother has Downs Syndrome, which is quite apparent when you first meet him. It conjures up all sorts of thoughts and feelings in people. But if you look beyond the label, he's a young man who can read and write. He goes to school. He has a girlfriend. He likes video games and movies. He loves his family very much and he's an excellent uncle to my boys.
When my mom first found out she would be having a Downs baby she was encouraged to abort or to adopt him out. He would never be smart or able to live on his own. He would be sickly and die young. He would certainly never read or write and may never walk.
She didn't accept their view of what he would become and she worked tirelessly - with the help of the services provided because of his label as well as by herself - to help him become what he is now. And believe me when I say he's an amazing human being. We don't even really see the label anymore.
When we got the diagnosis for my son (now a healthy nearly-18 year old, mainstreamed in high school, engaged in theater - both improv and scripted, and doing amazingly well) I danced around the office, scaring my employees.
More than anything else, this meant that the oddities were NOT MY FAULT.
He was 9 at the time, and his father (and his father's family) were quite clear on the issue: anything wrong with our beautiful boy was ALL. MY. FAULT. Maybe because we moved too frequently (in the same neighborhood ), maybe because I divorced him and married a man who didn't have that sort of history of abuse - for whatever reason, I was ruining the child.
Being absolved of all that by a pediatric psychiatrist (and then another, because my ex could not believe there was anything actually wrong with our boy's development) was one of the greatest reliefs of my life, because it meant that I could do something, it was not all about me and my parenting errors.
Conversely, when we realized that my daughter had issues (merely sensory integration, resolved easily once we figured out that they existed) I grieved for weeks and weeks. My husband (not the ex, the new and improved husband, who actually listens when I speak and vice versa) and I had no enmity over the causes of her differences and we were both aligned in our desire to help her. The diagnosis hurt ever so much more.
By now, we don't need labels anymore. The kids are growing into fine humans, and we've learned how to help them with that - practically speaking, the labels were a learning shortcut for us.
I can understand your mixed feelings about labels, but I also have to say that for me--and probably for a lot of other folks--labels fade with first impressions. I have a close friend who's an albino and, when I first met him, that's the first thing I noticed and thought about. However, when anyone who's just meeting him today asks me what his "condition" is, I seriously have to think about it and remind myself that he's an albino. I know him so well that it doesn't even register anymore. I'm sure everyone who knows and loves Austen feels the exact same way.
Oh, this post brought back so many memories for me. Going through the hearing test, ruling that out . . . the evaluations . . . the testing . . . the questioning. Though the label was hard at first, I'm glad for it, because Nigel really needed services, and he got them. But I also hope that the label will somehow help people to understand why he's different, and to accept him. *sigh* Maybe we'll get there someday.
my son has labels too...we are doing yet another evaluation, now that he is 10 and entering the years of puberty and change, to figure out which labels stay and which are going out the window...he's medicated quite a bit, i'm hoping that some of those meds will go out the window as well...i never bother with the labels for most people, i just say he has "issues" or "his brain wiring is crossed funny"...the 2nd one is the current answer we give to him as a way to explain why he takes the meds and behaves certain ways...odds are that yes, my son IS on the spectrum...home much so, i don't really know...the label doesn't change WHO the child is, just how the child is perceived...that's a hard lesson to learn...and one my son's father (my 1st husband and ex) still has yet to learn...he's stuck on the label..unfortunately, a lot of people get that way, and it seems they can actually look at my son for WHO he is when i'm non-specific with his "issues"...
We have such blinkered vision of others. What comes through here is not just the 'not-seeing' of your child but the disregarding of the mother and her perceptions.
This is such a moving account of the most disempowering situations imaginable.
Love & all my respect to you for holding onto integrity there
Mary LA
You've got it. You've really got it. I cried while I read this because it is so right.
I have dealt with this for the past 8 years with my son. He has had so much to deal with during that time, and I feel terrible about it. You're right, though, about how the label of autism is better than the other, worse labels. I had a neurologist tell once that he didn't have autism, it was just bad parenting. I was so angry that I cried. How could a doctor who works with brain issues ever say something like that?
Thank you for your blog. It is helping to understand my son even better because of how clearly you write about yours.
I stumbled upon your blog by mistake tonight, and I'm so glad I did. I was one of those parents who "didn't believe in labels", but all that changed when we started looking into getting my younger son tested for autism. I had actually put it off, thinking that a label would be stupid, since we were going to keep on parenting him the best we could, and it would only cause others to pigeonhole him or see him as disabled. But by the time we were seeking the diagnosis, we needed help, and after he was diagnosed, I saw the use of the label. It relieved me of my terrible secret burden: the thought that maybe I was a bad parent, and it was my bad parenting that was the problem. It relieved him of the expectations we had of him that he couldn't live up to, the ones that had us locked in a constant struggle that hurt him and hurt us.
The label became the key to the services we got to help him. It helped people understand in just a word that he was not just acting up, or at the very least, it made them back off and let me work with him.
Some months after he was diagnosed, a friend at preschool was pressuring me to enroll him for the next year. I explained that we had another plan and when she pushed, I told her that he'd been diagnosed with autism, and that we'd come up with our plan with the help of the preschool teacher, his doctors, and the school district. She told me, "I don't believe in labeling children."
Well, neither did I, until I needed to.