The Autism and Developmental Disabilities Monitoring (ADDM) Network is a group of programs funded by CDC to estimate the number of children with autism spectrum disorder (ASD) and other developmental disabilities living in different areas of the United States.
You can find out more about ADDM here.
I’ve spent a lot of time thinking about what I wanted to write about for this year’s Autism Awareness Day (and a HUGE thank you to RJ Scott for once again organizing this!). There is just so much that is involved in an ASD diagnosis. Then I thought, why not go to the expert, my daughter, who is 14, in 8th grade, and who was diagnosed with Asperger’s Syndrome 10 years ago.*
First, I asked her what the worst part of having an ASD diagnosis was. She had two immediate answers. The first, and the one that is a constant struggle, is that people just don’t understand. To look at my beautiful, talented, intelligent girl you’d never realize that she’s not a neuro-typical teenager. Spend a little time with her and you’d probably realize that something was ‘off,’ but you wouldn’t be able to pinpoint exactly what. Spend a lot of time (or catch us on a bad day), and it would be obvious that there was something going on, but it could still be difficult to know exactly what it was.
On a typical good day, unless you were working closely with her, you’d probably just think that she was a little odd, a little awkward, a little clumsy. On a bad day, you might see her refusing to talk, to listen. She might throw something. You would definitely hear her litany of negative self-talk. She would be snappish and rude, and then remorseful and full of regret. On a really, really bad day, you might even see her hit someone.
Middle school has to be the worst, most turbulent time in a child’s life (I know it was for me), and it’s been a struggle for us. When things are going well, they go really well, but when things are going poorly…
Included with her ASD diagnosis she has a diagnosis of Tourette’s and GAD (generalized anxiety disorder). She’s also dealing with the hormonal mood swings that all kids her age deal with. All of this combined can lead to some long and frustrating days for all of us.
She has a very difficult time identifying her anxiety (both that she’s feeling and the source of it), so by the time she realizes that she’s feeling anxious, it’s too late to get it under control before she’s out of control. We’re working with her counselor and her pediatrician right now to once again adjust her meds (we had a great balance, and then she grew and threw off her dosage). At least three days a week she calls me from the guidance office at school because she’s upset. The vast majority of the time she has no idea what she’s upset about. I then have to try to talk her through it, and hopefully, get her back to class (thank goodness she’s so smart – she misses a lot of school, and she still pulls all As), or decide if I need to go pick her up for an hour and let her calm down at home (thankfully we have the option build into her IEP).
Obviously, this takes its toll on me, as I’m constantly on edge, waiting for my phone to ring, and hoping that when it does I’ll know how to handle the situation. I’ve been a stay-at-home mom for about six years now, and I can’t imagine how I would be able to handle the stressful, demanding, full time job I had on top of taking care of her.
We are very blessed in that her school does a lot to work with us. I know many parents who are not as fortunate. A little understanding from education professionals, medical professionals, and the general public goes a long way toward making my daughter’s life easier.
Her second answer she gave me was that ‘there isn’t much I don’t like about having Autism.’ Probably not the answer you were expecting to get, right? Despite all that she has to deal with, she is learning to like herself. She likes that she’s a little different, that she looks at things from a unique perspective, and that can offer things that other kids can’t. It’s a funny thing, because she has some serious self-esteem issues that we are constantly working on. However, when she’s in a good place, and is calm and able to be objective, she’s learning to recognize that she is an amazing young woman who has a lot to contribute.
I then asked her what was one thing that she’d like everyone to know about Autism. Her response was not a surprise: she’d like people to be more educated and understanding, and since you’re reading this, a heartfelt thank you to you, because that’s exactly what you’re doing.
She doesn’t have tantrums and fits in public like she used to, but I well remember the days of the stares and looks of disgust that people would give us. Yes, the fact that the pepperoni is under the cheese on the pizza is a big deal, and she’s not just being a ‘brat’ are the types of things that I don’t miss dealing with. Now, she’s more likely to blurt something awkward or off topic to a stranger, and that at least, is easier to deal with.
Educating yourself, your family, your kids (especially your kids) can make a huge difference in the world for other kids on the spectrum. Being willing to look beyond some eccentric behavior could allow you to meet some amazing people, like my daughter. Thank you for taking the time to read this, and for making the lives of families dealing with ASD a little bit better.
*Asperger’s Syndrome is no longer an actual diagnosis – it now simply falls under the umbrella of Autism Spectrum Disorder. You can read more about the change here.