Monday, March 31, 2014
Autism Awareness 2014
Last year at this time one of my Facebook friends was campaigning for her friends to Light it up Blue for her son who had recently been diagnosed with Autism. We were at the top of the ski slope that has been our autism journey. James had received his referral from the pediatrician to be evaluated by the schools but we wouldn't find out that he is on the autism spectrum until the end of October, about six months later.
By the time we were given James' diagnosis we were fully prepared for it. Or at least as prepared as you can be. I was expecting it.
Throughout this past year we have also been addressing a relatively severe speech delay in our younger son, Liam. The organization providing his evaluation and services prefers to start with a few months of intervention before conducting the standardized autism diagnostic test. I have been concerned that Liam might also be displaying some characteristics that are consistent with autism but -- whether to avoid providing a diagnosis that they weren't qualified to make or because they didn't actually see it -- the therapists that he sees have not expressed concerns regarding him being on the spectrum.
Recently we made the decision to start seeing a Developmental Pediatrician, a specialist that we see in addition to our normal pediatrician, who can diagnose developmental delays, help us know how to advocate for our kids in the school system, prescribe medications if the kids wind up needing them for ADHD or insomnia in the future, and this doctor would help provide some continuity for the kids when it come to therapies and delays that need long-term monitoring.
James had his appointment at the beginning of March. We confirmed Autism and something that is basically a pre-cursor to ADHD. Later in the month Liam had his appointment. The doctor diagnosed Liam as being on the spectrum as well.
Honestly we were a little caught off guard. I suspected that she'd find something, but there are so many things he does that are not typical of ASD (Autism Spectrum Disorder) that I really thought there would be some other thing that I'd never heard of. Or that he'd be just outside the spectrum. She basically said that there are things he does that are very "spectrum-y" and other things he does that are very "not spectrum-y" and that we might look back in five years and wonder why we had given him that diagnosis. But right now the diagnosis fits and it should help us get the help and resources that we need to keep him on the right track.
And here's the thing. When people hear "Autism" they tend to forget that autism is a spectrum and that kids can fall all across the spectrum. So we often get one of two responses.
The first: "I'm so sorry!" and offers of prayers for healing. And our lives have changed. This is hard. But my kids don't have a disease. If you are a praying person, I beg for prayers that I would have patience and creativity. That there would be peace. And sleep. And good food. That we would have wisdom and discernment as we make choices about therapies and schools. That we would be wise as we navigate IEP meetings and advocating for our kids. My kids just see and hear and feel the world differently than I do and sometimes it's hard for me to know which words to use and which battles to fight. When to discipline and which methods will work. What do they understand (even if James can recite the rules, does he really understand them; and just because Liam can't speak isn't it possible that he understands more than he can say)? When should the day be child-directed and when should it be parent-directed (if my kids always got to chose we'd probably watch tv all day). I honestly don't feel like there's anything "wrong" with my kids, they're just "different" and its up to me and Nathan to figure out how to relate to them so that they can navigate life. Sometimes that's hard.
The second response we get: "But they seem normal". I think when most people say this the sub-text is likely, "help me understand." But I have my own baggage. And while on this journey I've had people tell me (not in so many words) that when I was seeking an evaluation for James that I was trying to avoid taking responsibility for parenting him. This is pretty common for parents of autistic and sensory processing disorder kids. So please do us a favor and say what you mean. If that's, "I don't know very much about autism, can you help me see what you see?" or "I'm not sure what the warning signs of autism are. I can't discern a difference between your child and my child, could my child have autism, too?" Not that I would be diagnosing anyone, but that could be a starting point for a conversation about what it's like to parent kids who are on the spectrum. That way I know that you at least have a foundation for beginning to understand why I turn down invitations to just about anything if its during a time that Nathan is working or traveling (I'll tell you now--my kids don't understand normal safety precautions, they'll grab a knife off the counter to play with or spray themselves with roach spray if they can reach it or put batteries in their mouths; when I'm at home I have a general sense of when I can relax and what I need to worry about but when we're out of our house I'm on high-alert all the time and even then, depending on the setting, I just can't handle it without help from another adult). But if what's really in your heart when you say that they seem so normal is "you're deluding yourself and your kids are manipulating you," then please just don't say anything at all. Instead, observe our kids and how we interact with them. Talk to them and play with them. Take on a learning posture (green line on the Entry Posture Diagram for all you STIMers out there!).
Sometimes I think a movement that promotes "Autism Awareness" can do more harm than good. I wouldn't say that autism is something that needs to be "eradicated" not the way something like Tuberculosis or Polio or even Miscarriage and Still birth do. An "awareness" movement doesn't always promote understanding; it often promotes fear. There's a large group of people who have autism or asperger's who are trying to be adults and they're trying to make friends and get jobs. This kind of "awareness" often isolates adults and makes them feel broken.
On the other hand, I think that parents should be aware of the warning signs of autism. We should be aware that our children or our family members may be affected. And we should be aware that not everyone who is diagnosed with "autism" will look or act the same way. Early intervention is important. Ongoing research is required. But instead of "curing" these kids, I think we need to learn the language they're speaking. I've been thinking lately that my approach to my kids might be similar to the approach other parents who have adopted young kids from other countries take. So many times there is a reason or a trigger for their meltdowns and I have to come put myself in their shoes to figure it out. I have to find new ways of saying things so that they'll understand. I feel like we don't speak the same language and every day I'm faced with a decision: do I railroad them and force them to obey because I'm bigger and stronger or will I attempt to speak their language and learn from them so that we can work from trust and understanding?
Ultimately, their brains are physiologically different than ours. But their value as human beings is no less.
WAYS TO HELP
Most of the time I'm not sure how to ask for help. But here are two practical ways that you can start, 1) Wear blue on April 2 in support of James and Liam and the journey that our family is on, take a picture and tag Nathan or myself when you post it on Facebook or Instagram and give it the hashtag, #TheStoryofJamesandLiam, 2) Ask me about them. If there are things that they do you don't understand, ask me. I'm passionate about helping people understand them because they are pretty great kids and very misunderstood.
If you really want to go the extra mile in support of our family, you might consider supporting Nathan financially as he works in Campus Ministry with InterVarsity Christian Fellowship and he raises all of his salary and operating budget. We're working toward getting him fully-funded so that we're closer to being financially free for me to stay at home. Go to this website for more information on how to do that: http://www.intervarsity.org/donate/to/nathan_white
Thanks y'all, we couldn't do this without you!