Remember that time Andreas’ pediatric asthma & immunology specialist started asking me all these weird autism questions? And how I was super annoyed with him because Andreas was like, 2 years old, and I didn’t know much about autism so I brushed it off? No?
Well what about that time I had my family doctor refer him to a developmental pediatrician when he was 3 because I just knew in my gut that something wasn’t quite the same about him? No?
Or the time the developmental pediatrician agreed and referred him to the Early Childhood Development Clinic’s preschool autism assessment program thingy? Seriously? Don’t remember that? I may need to blog more.
You must remember then, when the wait for the clinic took over a year and the assessments themselves another 6 months and then the actual day of diagnoses didn’t happen until February 20, 2013 when he was five and a half years old. Oh wait. That’s today. Which means you’re all caught up.
And it also means you’re going to remember that time I was right about autism. Because today, my very quirky troubleface #2 was diagnosed with Autism Spectrum Disorder. It has been one seriously long road and I’m so relieved that the whole process is over. To be honest, for all the build up and anticipation that’s lead to today, the actual diagnoses was kind of anticlimactic.
So what? So now we’re going to talk about autism because there are a bunch of things specific to Andreas that I don’t want to repeat over and over and over again.
“When you’ve met one person with autism, you’ve met one person with autism.”
What does that mean? It means autism is called a spectrum disorder because no two people with it are the same. In Andreas’ case it means he has some sensory integration/processing issues – he is oversensitive to sounds, textures, smells, and tastes. Trying new food is a big, big deal. He tends to wear the same clothes until they can be worn no more. We have a set of noise cancelling head phones for when places like church are too loud. He closes the curtains when it’s snowing or raining because he says it’s too loud. Little things like that. Stuff you wouldn’t notice unless we pointed it out, but stuff we can’t help but notice because it’s like, our job and stuff as his parents. He likes his routine and finds change challenging. If he knows change is coming or that something will be different, he does okay. Surprises are not his favorite however, unless they involve toys or chocolate or video games. When he’s overwhelmed and excited he tends to spin around and run around and make you dizzy just watching him. When he’s overwhelmed and tired he retreats and doesn’t want anything to do with anybody until he’s good and ready. Which happens every day after school. He has a limit to how much social interaction he can take at a time. His social communication is not great. He has no speech or language delays, but he doesn’t converse well and doesn’t answer questions well either. He’ll lecture you for as long as you’ll listen to him though. He doesn’t always pick up on when others are done listening and needs to be told when it’s time to stop talking. His interests are few and specific. He likes bugs, super heroes, video games, whatever his older brother is doing, and being active. Sometimes he lines up his toys instead of playing with them. Pretend play isn’t his strong suit. Often when he looks like he’s “pretending” he is really just re-enacting something he already saw. He really likes playing with our manual egg beater – the spinning just fascinates him. He notices change in other people. All of his teddy bears are girls. We don’t know why but they are absolutely not allowed to be boys. He likes rules/the way he perceives things are to be done, and we are having a real time with teaching him that his younger brother and baby sister are allowed to play and do things differently than he does. I could go on…but I will stop.
That Doesn’t Sound That Bad
It’s not, actually. Most of the time he just comes off as quirky and we aren’t trying to make more of that than it is. When you put all of those things together though, is how we got the diagnoses, not just one or two of these things on their own. It’s not him only at home or only at school or only at church or only alone or only with others or only with peers or only with adults. It’s literally the whole picture of him all the time, everywhere, combined. It gets tiring when people say things like, “he seems so normal.” Or, “he’s fine, he’s just a boy.” Or, “he just needs a spanking.” Um no. To all of the above. If you know me, at all, you’d know I am actually a fairly intelligent person. I’ve done a lot of research over the last 3 years. I find it telling that every doctor who encounters him starts asking questions. You know why it’s always the doctors seeing things others miss? Because they’re trained for it. They know what they’re looking for even when they aren’t looking. What is quirky to you right now when he’s 5, could be problematic to his boss when he’s 25. The doctor sees that. Brushing it off and saying he seems fine doesn’t help. I’m sure people mean to be encouraging, but it usually is very discouraging. While we are doing our best not to make more of it than it is, it sometimes feels that others are making less of it. I’m still trying to find the balance.
Speaking of Doctors…
Guess what ladies and gents? There is a very short list of people who are qualified to diagnose autism. You ready?
No really, the list is that short. There are professionals who can red flag a kid for developmental disorders with their eyes closed – speech therapists, speech language pathologists, occupational therapists, behavioral therapists, teachers. You know. People who work with kids every day professionally. But when it comes down to it, none of those people can (or should) make a diagnoses. Even the kinds of doctors who are making these diagnoses is a short list. My family doctor didn’t even touch it, which SHOULD tell people something. To my knowledge, these are the kinds of doctors who can tell you if your kid has autism:
That is it folks. The evaluation process for Andreas involved speech, occupational therapy, cognitive testing, the ADOS and ADI, in home observation, at school observation, a speech path, OT, his kindergarten teacher, a psychologist and his developmental pediatrician. At the end of the day it was the psychologist and developmental ped working together to come up with the diagnoses. Now, in our case, Andreas is doing pretty darn fantastic at school this year. His teacher is outstanding and he’s thriving in her classroom. If we were to look for a diagnoses based on him in that setting alone – this year in that class with that teacher – he might not get diagnosed at all. Which makes us pretty happy, because that means school is a place where Andreas feels safe and is excelling. Can’t complain about that. That is why the doctors look at everything. I told Andreas’ teacher that if all teachers were like her, we probably wouldn’t have sought a diagnoses. But the reality is that not all teachers are created equal. And we’d rather do those assessments and have the diagnoses (if there was going to be one) NOW, before any problems arise, so that we can be ready should the need arise down the line. It’s a card in our hands that we can play when he needs us to do so. It’s a tool to help him. And I’d hate to look back and regret not having pursued this in the event he needs the help at some point, that only a diagnoses can give him.
“But I’m not a doctor.”
That’s right. You are not a doctor. No letters after your name that read, ‘MD’ – no opinion. Okay. Not really, no opinion. But really – no second guessing the mom or dad or actual doctor no matter how much you disagree. Maybe it’s Andreas and you’re in the “he just needs a spanking” club. Or maybe you don’t know Andreas and it’s some other kid in your life whose mom or dad you’ve been dismissing silently (or not so silently). A little bit of listening goes a long way. Just saying. If you aren’t helping, then just…shush.
Was He Vaccinated?
Because I know people wonder this, I’m going to come right out and say that all of my kids are fully vaccinated right on schedule. The vaccines have nothing to do with Andreas’ autism. We will continue to vaccinate our children. I’m not even remotely interested in debating or hearing what anybody has to say about this issue. I’ve done my research and made decisions that are right for us. You do the same for you. Everybody lives happily ever after. The end.
If we’re talking about what we think “caused” this, I’m going with genetics and that’s all I’m going to say about that.
What About Asperger’s Syndrome?
We’ve talked a lot about Andreas possibly having Asperger’s. And actually that’s what it would have been classified as, BUT the whole diagnostic criteria are changing this spring and Asperger’s is being done away with, as is PDD-NOS (pervasive development disorder, not otherwise specified). All disorders on the autism spectrum are going to be called autism spectrum disorder, and given a classification of mild, moderate, or severe. Since this will be the standard within months, Andreas’ doctors are going with it now.
And Your Other Kids?
Are you trying to ask me if they’re normal? No. The word you’re looking for is neurotypical. And yes, my other 3 kids are neurotypical far as we can tell. None of them are normal. I live at the circus people. No such thing as normal here.
So Now What?
Now nothing. Not much is changing. We keep letting him grow and his pediatrician will keep track of him. He’s the same kid. We are really feeling like we’re cheating or something to be saying that our kid was diagnosed with autism and yet, everything is really okay. It is. If/when anything comes up we’ll deal with it. Not rocking the boat because it’s on a good course at the moment.
What Does Andreas Say?
I’m so glad you asked.
(That’s a quote by Sheldon from The Big Bang Theory. We sometimes call Andreas our little Sheldon. If this is not funny to you, well, too bad. I’m not sorry.)
You Ran Out Of Points So You Made Up #10, Didn’t You?
Why yes, yes I did.
…aw crap. Not the end. I just feel the need to say that I am not an autism expert. I am an Andreas expert. And I don’t want this blog post to minimize the tremendous challenges that other people with autism face daily, to do things we take for granted with all of our kids – including Andreas. That thing about it being a spectrum? We are on a really privileged end of that spectrum and we know it. Now that I’ve got that guilt off my chest, carry on.
copyright (c) 2013 Jenna Pelias // all rights reserved