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Blog under the Creative Commons Attribution 3.0 License
Dec
13
(2005)
On the possibility of autism
Filed under: Uncategorized. Tags: personal.
My son had a speech therapy session yesterday, and we were all thinking things were going pretty well. He’s been doing so well that I didn’t even take time off work to go to the session (I have been to almost every other session). Then, I get a phone call at work from my wife, and something’s not right. Hard to make out what she’s saying on the phone, and then I recognize a few words. Autism. Asperger’s Syndrome. The therapist says she saw some signs that were pointing to a possible case of Asperger’s Syndrome, and that she’d like to refer us to the Children’s Hospital for a full assessment and possible diagnosis.
I go a bit numb. Then, I go the rest of the way. I leave as soon as I’m able, and when I get home we’ve all had some time to think about it. We’re alternating between being completely OK with the possibility of it – we know we can handle it, and he’s such an intelligent and sociable boy that even if it is true he’ll be able to function normally. Then, we start thinking about the stigma. Even if he’s able to function 100% normally, he’ll have a Label attached to him. If he’s diagnosed, there will be Programs. Specialists. He won’t be Normal. That’s when it hits – there is a chance that his childhood could really suck if this label and associated stigma is applied to him. How will he cope with being Different? Should he have to?
Then, I do what a good geek does. Hits the Wikipedia (autism, asperger’s syndrome) and Google (1, 2, 3, 4).
I grew up with a mild case of epilepsy – I was just different enough to feel that I didn’t fit in (medications, doctors, occasional seizures) but normal enough to do everything that my friends did. There was a bit of a stigma (”epilepsy? isn’t that when there’s something wrong with your brain?”) but nothing anywhere close to what’s associated with autism. As irrational as it is, I kept seeing Corky Thatcher (I know, he had Down’s Syndrome – my own irrational fear and association).
The irony is that a diagnosis would help explain a lot – he’s been a much more challenging boy than any of his friends or cousins ever have been, right from day 1. In a sense, there would be a bit of relief – it’s not something we’ve done wrong, but a bona fide medical condition. But then I start wondering if I brought it down on him. Feelings of guilt (rational or otherwise) and fear.
Regardless, he hasn’t been diagnosed – we’ll be having some assessment sessions in the new year – and he seems so completely normal that I have trouble picturing this possibility as being anything other than a drastic mistake by his speech therapist. She’s not a doctor, and is not an expert in autism, so she may not be on the mark.
And this is not a plea for sympathy – none is needed (and please don’t offer any). I am (yet again) simply using my blog to help me structure my own thoughts.
Darren, thanks! We’ve realized that if it comes to be, that it won’t make one bit of difference how we think of or treat our son. He rocks hard, and will always do so. Nothing can ever change that…
I know you’re not “fishing for comments” but….
Your son will always see himself through the eyes of you and your wife. That’s what he’ll always remember and that’s what will provide him with his anchor as he finds his way through all the hardships ahead of him. And I don’t mean that he’s going to have a special set of hardships other kids don’t. Every kid has their schtick; the something or other that some mean spirited kid will peck at. The love, care, concern and confidence that you and your wife have in him will see him through all that. From what you wrote I gather it’s not yet confirmed that he actually has asperger’s and if he doesn’t, g-d willing, he’s still going to need to see that same reflection of himself in your eyes — love, care, concern and confidence.
All our kids have their hardships. When my 4 year old daughter had part of her ring finger amputated my wife and I went through something similar to what you describe for you and your wife. 6 months later she sees herself as normal because that’s how we see her. I’m no expert on any of this parenting stuff. I’ve got a long way to go and my kids keep showing me how and where I fall short every day — I keep trying to change and adapt. But for all my shortcomings as a dad they’re growing up strong, healthly self-confident kids. I think it’s because my wife and I love them so much and we tell them so every day. I think you were chosen to be his parents for a good reason — your little guy is in good hands.
Anol, thanks for the thoughts – and the set of links! I totally agree about avoiding snake oils, and have been planning on supporting my son’s strengths (whatever they may be) all along anyway, so no change there
Cole, naive is fine by me. I think I’d rather stay naive and happy than become all jaded. You’re right, though – there are so many stigmatizing issues out there, and I hadn’t thought of the severe food allergy side of things. That must be tough, and I’d imagine other kids (and their parents – how wrong is that?) could be pretty insensitive about that.
When I posted about this, I was truly not fishing for comments – I haven’t been able to talk to anyone about this in person because it’s all too close to the surface right now. But doing a brain dump into my blog definitely helped me gain some clarity. And the comments that you people have offered have helped more than I would have imagined possible. Thanks to each and every one of you (and I got many “off blog” comments as well). It’s so awesome to be a part of such a rich, deep and supportive community. If anyone ever asks me why I blog, I’ll point to this as one of the main reasons.
D … The hardest part about being a parent is dealing with the realities of it all. My daughter has severe food allergies and has a bit of that stigma you talk about attached to her. She can’t eat lunch at preschool with her friends, she has to stay away from her cousins when they are having snacks, and she is just generally leery of food. Like you say, on one hand my wife and I have a very positive perspective on it all … on the other hand it worries us sick and we know what she is in for is far from normal. We were on our way back from the specialist two weeks ago when we read about the girl who died from kissing her boyfriend after a peanut butter snack … not an easy thing to read, given the Dr. just reminded us how severe our little girl’s peanut allergies are. It isn’t the fact that she has this stuff going on inside her body that terrifies me, its that other people associated it with us being protective, her being picky, or any other number of stupid misconceptions. At the end of the day our children are wonderful, provide us with so much joy, and are the light of our lives that it really doesn’t matter what other people think. I know that is a bit naive, but hey that’s my perspective. You and your family will be great. Trust me, this will only make your relationship with your son stronger and more special. Sorry for the comment, the personal side of your post just struck me. Good luck and do let me know if there is anything I can do!
Hi D’Arcy
My 5 years old daughter falls under autism spectrum. When we found that out that our life came to a standstill (I stopped blogging for 3 months), it was the fear of unknown.
Now at least we know a little more about it and moreover we know more about our daughter. Here the basics we learned –
1.Autism is not a disease – it’s a neurological anomaly ‘spectrum’. We consider it abnormality ‘cause the symptoms doesn’t falls under our pre conceived idea about normality. No one can definitely tell you why autism occurs, there are many hypothesis (including genetics) but no concrete answer. As it’s a spectrum – the impact varies. Actually, if you ask me – I think there is nothing called Autism. We came up with the term from our stupid perspective of ‘categorization’ of everything. Every child is unique, there problems too, are unique.
2.As we can’t pinpoint the cause-effect-cure for autism many witch doctors emerged with different snake oil treatment (mercury extraction therapy, gluten free diet etc.) Please don’t fall into their trap.
3.’Normal’ kids and their parents will not understand – so don’t even bother.
4.Every autistic kids are great in something (my daughter in computer games and Lego structure building) – please encourage that side of him/her
But above else I really liked what Sami Khan said “I seriously take issue with the word “normalâ€, considering all the “normal†people have an IQ of 100, I would rather have a kid with Asperger’s and an IQ over 130, then a “normal†kid any day!â€
My de.icio.us link for Autism: http://del.icio.us/AnolSoulSoup/Autism
Thanks for your thoughts. I’m not at all worried about intelligence – he’s an obviously brilliant boy. The last thing I want is for him to be completely “normal” – but I also want to protect him from the nastiness that will be flung his way if he is “different” as well.
Overdiagnosis is likely turning up many more cases of this – even if it isn’t actually more prevalent now than a decade or two ago. Same thing with cancer – years ago, people just died of “old age” – now we know that a big chunk of that is cancer/heart disease/etc…
I seriously reckon that if you had the same level of testing / diagnosis / descriptors and awareness of these sorts of things 20/30/40 years ago we’d all be labelled up to our eyeballs.
My Dad & Uncle, for example, casually pointed out to me a year or so when I was worried about my daughter and dyslexia that they had been acutely dyslexic but had only figured it out a few decades after the fact. It’s like depression… more people aren’t depressed now, more people are diagnosed as depressed.
We’re all different, in wonderful and far reaching ways, it’s just that what used to be ‘who you are’ has started to become ‘what you’re suffering from’ when in fact as long as you’re with people (and in contexts) that don’t force you to do stuff that doesn’t sit well with you (such as spelling tests) then its no problemo at all. And with great a great dad (and mum too I guess
like your little ‘un has I reckon you’ve got very little to worry about at all, diagnosis or not.
I have also met very interesting people with asperger’s… Very intelligent, yet eccentric, some of them not even knowing that they have it… The fact didn’t affect them either. Anyhow, I don’t think it’s a big deal. It’s just this society’s agenda to stimatize everything. All of us have more of one thing and less of another… and it makes the world a better place! I just think that the person needs to know the fact and then it just becomes and obstacle to overcome… You as the parent, or the teachers, etc, have to help them overcome their own limitations or at least be understanding of them when they come up. But at least you know ahead of time, now you can prepare him for what might be ahead and possibly how to deal with it… or even teach other people around him to deal with it. I seriously take issue with the word “normal”, considering all the “normal” people have an IQ of 100, I would rather have a kid with Asperger’s and an IQ over 130, then a “normal” kid any day!
Regarding diagnosis, now that I’m somewhere I can type more freely, I’ve recently discovered the disorder not very well known as dyscalculia. All of my own experiences seem to point to me having it, but nobody knew that when I was in school. So, as you could imagine, I did not perform very well in math and didn’t improve at a normal rate. Now, looking at what can be done these days to help dyslexic children to learn, I think that if I’d been diagnosed early perhaps other approaches could have been taken and I could have done much better at math, and probably felt better about myself. I think I suffered more stigma for being “stupid” in math than having a legitimate learning disability.
So, my opinion is that a diagnosis and a name for what you’re dealing with gives you many more options. If said child is paced according to his abilities and not the social standard it might make him feel better about himself throughout his childhood too. Just my uninvited two cents.
Just as a point of note, certain very intelligent people I have met have had asperger’s. They had some social difficulties, but brilliant heads on their shoulders.
Teddy and Bill – thank you so much for your perspectives. You have no idea (or maybe you do) how much that helps right now.
I know you aren’t seeking comments but I feel I had to share my experience. I have 2 sons who have been diagnosed as Asperger’s Syndrome. The youngest (nearly 13) was diagnosed about 4 years ago and the eldest (15) was diagnosed last year.
Firstly let me say that the Speech therapist is the person most likely to spot Aspergers. This is because they usually pose questions about how would you respond in a particular situation and Asperger’s reveal themselves because they have trouble understanding social situations. Asperger’s people are as likely to be social as the rest of us. But they are less likely to correctly interpret the other persons intentions.
It’s important to understand that Asperger’s isn’t an illness. Autism is a spectrum and we’re all on that spectrum somewhere. It’s just there is a point on that line where that feel you deserve a label.
Asperger’s is a different way of viewing the world. By having a diagnosis it will allow you to translate those parts of our world that they don’t get. But on the other side they can show us a view of our world that we don’t see. It’s like having a friend visit from a different culture. They see us with fresh eyes.
I wish my eldest son had been spotted earlier. I think he would have had an easier path if we had known.
I recently heard an Asperger woman talk(40-ish). When she was a teenager her mother took her to a psychologist. The doctor asked : “Do you ever hear voices?”. She thought of course I can hear you right now. Sh answers : “Yes!”. Doctor asked : “Do the voices tell you what to do?”. She thinks yes my mother always tells me what to do. She answers “Yes!”. The doctor diagnosed her as schizophrenic. It took her 20 years to over turn that diagnosis (she had to get a psychology degree to achieve that). Having a diagnosis means we can ensure that never happens to our children.
Forgive me for butting in. But I thought there might be some value in sharing.
As a teacher and scout leader, I’ve been with quite a few kids on the aut-Asp continuum. And it’s just that. I’ve even “diagnosed” is once, in that I got the parents to get an assessment done, and it turned out positive. Teachers will know that something’s up, and will adjust teaching to suit. If they have time and resources that is. One of my most brilliant kids has AS.
Parenthood is fraught with challenges. I have my own as well. But I think our generation makes it easier to cope with them.
Heya Josh. Thanks for the thoughts. I’m not concerned about the label at all myself – I’m quite concerned about how others might treat him if he’s labeled though. One thing that surprised me in my reaction is that I wasn’t at all afraid about how I’d react – I know I’ll love him completely no matter what, and that he is a brilliant and funny little dude in his own right already. I was concerned solely about the BS he might have to put up with if this turns out to be the case.
I was also initially planning on keeping this off-blog to protect him in case any punk kid is surfing the Wayback machine in 10 years and find this. In the end I decided to use it as a way to gather my thoughts and help to move forward. I hadn’t told anyone about this in person yet – every time I think about talking about it I nearly break into tears – but somehow I can blog about it. Go figure.
PS. Punks from the Future – if you’re reading this, and use it against my son in any way, I’ll make you watch as I feed you your still-beating hearts.
Well, my .02 is that your son [name left out to protect the innocent] is exactly who he is and has been from the beginning, and the adding of a label is meaningless beyond what it might do to help you categorize your own thoughts around his behavior and might lend a way to help him through potentially difficult situations and times. Developmental differences are quite common in our population (I recently heard that 1 in 100 people in has Tourettes!) and we’re becoming more and more aware of them and therefore are more able to help kids understand themselves better. Dyslexia runs in my family, though somehow I was spared, and so I have seen the effects of social/societial stigma up close, and the truth is, as we move farther into the future, this becomes less and less an issue.
I’ve met [you son] in person, and I know he’s a terrific kid, who’s smart and quite social. If the doctors are seeing signs of possible Autism/Asberger’s, it’s got to be relatively mild, or conversely perhaps they didn’t engage your son enough to raise his attention level. It could just merely be that he’s brilliant. When I was in Kindergarden, the teachers and administrative staff were convinced that I had learning disabilities because 1) I wouldn’t play with the other kids, 2) I sat by myself most of the time, 3) I couldn’t tie my shoes, 4) I wouldn’t engage with class activities. THey had my IQ tested in the middle of the 1st grade, and immediately had me moved to a gifted class. The truth was — I was bored to tears with what they were doing, and the kids were not engaging to me. So, take whatever the doctors say with a grain of salt, and just keep loving [your son] in the way you know best how. I’m certain that between you and [your wife], he’s gonna get the best parenting possible for him, and will be just fine.
Don’t sweat the labels.