I was recently engaged in a conversation with someone who was telling me about the training they received with regards to autism spectrum disorders. The conversation seemed very mechanical, so I asked who did the training. They responded with someone from their Area Education Agency.
That’s good, it’s a start.
But, it’s not enough.
If you are in the position to provide this type of training to your staff (teaching or otherwise), do us all a favor. Invite some moms and/or dads. I bet they would be willing to share – for very cheap – in fact, maybe just a smile or a friendly invite. A chance to tell teachers and others about their child? I don’t know many that would turn that opportunity down.
These people are in the trenches every single day. EVERY. SINGLE. DAY. Do you want to know how to help their child? Ask them, I bet they have a pretty good idea.
Better yet, ask some who has autism.
I am an academic nerd – I’ve come to terms with that – but it doesn’t mean that I don’t see the ‘backwardness’ that we sometimes use. University curriculum is developed so that theory often precedes practice. It makes sense – a student must understand the principle before applying the ideas to their work.
Only, in this case – it just doesn’t work that way. Want to know how I learned so much about autism?
From reading about it – practice before theory.
Initially one may think reading is learning theory, in this case it is much different. Before I read anything about why autism happens I read stories from other moms and learned strategies they were using at home. I read stories from art teachers who used art therapy, from music teachers who used music therapy. I listened to their stories. I thought about how those ideas could (or not) apply to my Tucker. All of these readings provided ideas and ideas – but none told me ‘why’ it worked.
From living it – practice before theory.
Before I tried any behavioral modification I had to allow him (and me) to experience all of it. Full on melt-downs, incomprehensible screaming, hitting without cause. I listened to him. I thought about him. I loved him through every tough moment. I spent an immense amount of time trying to enter his world, trying to recognize how his senses took in information.
Theory is good, theory is important. Theory helps explain why, and at the risk of losing credibility as an academic guru I would propose that in this case – theory was of little help to me, and still is.
Recall Day #200 – Stop reading this blog, on that day I shared why I don’t really like reading about autism anymore. Today’s headlines?
Immediate clamping of umbilical cord after birth associated with lower fine-motor and social skills at age 4, particularly in boys
Ugh…just one more reason why my boy may be different. But the article (like so many) make a claim that is not fully quantified and creates undue panic. I imagine myself to have this internal discussion, “How long did they wait before clamping the cord? How long is a delay? Oh my gosh…a delay is 3 minutes – my baby’s cord was clamped at 2:45…now he will have delays.” Yes, that may feel excessive – yet, I know many folks who would have those thoughts.
I also am not a fan of theory-based research because autism is mysterious.
- I don’t know why something works for another child and not for my own.
- I don’t know how he can be hypo and hyper sensitive all at the same time.
- I don’t know something works for my child and not someone else’s, I can hypothesize…but only for my child – not someone else’s.
There are so many tactics that we use – and I can’t tell you why they work. I wish I could. I wish I could give a recipe or a prescription, ‘Just do this…it will solve the problem you are having!”
But that’s just not how autism works. Autism isn’t a disease on a piece of paper. Autism is a child – living, breathing, striving, and if supported…thriving.
So, the next time you (or someone you know) decide to put together a training/teaching session about ASD – ask a couple of parents. Better yet – ask parents who have VERY different spectrum-affected children. Ask a parent of a child who is nonverbal and one who is highly verbal. Ask a parent of a child who spends little to no time with a special education and one who spends the entire day in the special education classroom.
Then, and only then, upon hearing real stories from those in the trenches will people begin to understand the vastness of the spectrum and the very real, yet simple ways you can help our children.