Jess at Diary of a Mom

A couple of years ago, I had a pretty incredible opportunity. I’d very recently found my voice as an advocate for my beautiful daughter, then just five years old, and so many like her who struggle daily with the challenges of autism. I had spoken publicly just once before, yet I found myself being asked to guest-lecture to a group of prospective neuro-psychs at MIT.

I was terrified, but I knew there was no possibility of saying no. What follows is the post that I wrote about the experience.

I share it here for a couple of reasons. Firstly, because I’d be hard-pressed to believe that I am the only one who needs the reminder that as parents, our experiences with our children are just as valid and valuable as the knowledge gained by scientists in a lab – no matter how esteemed or revolutionary their work might be. As much as we all might know that, time and again I see our self-confidence eclipsed by insecurity when we find ourselves sitting opposite imposing desks behind which hang lab coats and multi-lettered degrees.

I also share it because I think that it’s vital to keep reminding the world that when it comes to our children, perception is everything. I believe that we as their parents must continually push those who have the power to either propel our children forward – by fostering their gifts and working to fully understand and leverage their unique perspectives – or to put them in boxes of their own design because their imaginations are too damn limited to see beyond convention.

It is up to us to fight for the former and steadfastly refuse to accept the latter.

So, when MIT called, I went…

I guest lectured at MIT today. I mean, honestly, I am certain that no matter how may times I utter that sentence it will not sound any less absurd to my ears. Me. Guest lecturing at friggin MIT. I mean, really. FIT? Maybe. Heaven knows I do know shoes. But MIT? That’s a head scratcher.

The class that I taught was an Introduction to Autism, taught by Professor Pawan Sinha, a charming and obviously well respected Professor of Vision and Computational Neuroscience in the Department of Brain and Cognitive Sciences. Dr. Sinha felt that it was extremely important to add some personal color to the clinical overview of autism. “The mouse lab is one thing,” he told me, “but without the understanding that this is something that effects real people, then what have I taught them?” Clearly, the world needs more Dr Sinhas.

I was apprehensive going into this. I mean for heaven’s sake, I’m no professor. Hell, I just had to stop to think about how to spell the word professor. But with some gentle prodding from my husband, I was on my way.

A friend reminded me that as much as those students might know about — well, you know — smart people stuff — no one knows my story better than I do. It was very comforting advice and I realized that he was absolutely right. I am indeed the pre-eminent expert in the field of my own experience. It wasn’t as though I were walking into a history class where they were likely to point out my muddled dates or misinterpretation of data. Nope, this was just me telling my story. Just like I do on my blog every day. I could do this.

But then the date came closer and the nerves crept back in. How would I fill an hour of air time? The typical class format is an hour lecture followed by a half hour of discussion. An hour. For heaven’s sake, the only speech I’d ever delivered was fifteen lousy minutes. And I agonized over that! An hour? What would they expect from me? What information could I give them that they would find useful? Would they be disappointed in my presentation? Would I come off as terribly amateurish and unpolished?

And then my friend John Robison checked in the night before last with a casual question via Instant Messenger.

“Are you ready for MIT?”

I told him I was getting there, but that I was a bit nervous.

He told me, in his delightfully Aspergian way, that he couldn’t see why I would be nervous. “They are friendly,” he wrote.

Now you must know that I asked John some time ago if he gets anxious at all before speaking to the large crowds that he addresses as a matter of course. He was writing to me from Chicago, where he was scheduled to appear before 2,000 educators the next morning. His answer had been typically John.

“Why would I be nervous?” he asked. “They are presumably favorably disposed toward me. They asked me to come, after all. I certainly do not detect any threat from them. It seems unlikely that they wish to do me harm. Therefore, I do not see any reason to be nervous.”

Right. OK. So, um, yeah, they’re not likely to organize and attempt to mutiny. Great. I feel better now.

But then he asked a question that unwittingly changed my entire perception of the experience and lightened the self imposed pressure almost immediately.

“What do you want them to know?”

I stared at the question on my screen. I let it sink in. What do I want them to know? Hmm. Not ‘What are their expectations of me and how do I meet them?’ but ‘What do I want them to know?’

This was no longer a challenge to overcome. It had just become an opportunity to influence a group of incredibly bright people who have signed on to learn about autism. A group of people that might very well contain the next fabulous and compassionate neuropsych or the researcher who finds that missing piece of the puzzle — who tells us why. And the question was, ‘What do I want them to know?’

I relaxed. I dug in. I hoisted my soapbox over my shoulder. I scanned my files and found the stories that mattered the most to me. The ones that I thought they should hear.

I told them about the missed opportunities for discovery early on. The red flags that now seem so hard to miss, but that no one was looking for. I told them about the disastrous experience with that first neuropsych. The one who somehow found the magical power to prognosticate in the bevy of degrees on her wall. The one who told us after a two hour meeting with her that our three year-old would live a solitary life. The one who saw my beautiful baby as a set of limitations. The one who could have leveled a parent with less conviction.

Perhaps, I told them, a different parent would have looked at the white lab coat and the pretty Harvard degrees and said, “Oh well. I thought I knew my little girl, but I guess I was wrong. I suppose there’s no point in trying to change who she is. I mean, Harvard. She must know what she’s talking about. No point in trying to make my baby what she’s not.”

I told them the fabulous story I read not long ago. Forgive me, I can’t remember where I saw it, so if it was on your blog, please tell me. In the meantime, I’ll take some license with it if you don’t mind. It was a story about a child with freakishly long fingers. His parents were terribly upset by his deformity and they brought him to a renowned specialist seeking his help. The specialist gasped when he saw the child. “My God,” he said. “This is amazing. He has RJ Syndrome.”

The parents were in a panic. “RJ Syndrome? Doctor what does this mean? What can we do to help him?”

The doctor smiled and told them that the boy was likely to be a musical prodigy. He told them how incredibly lucky they were to have been blessed by the rare and wonderful RJ Syndrome. They ran home and bought him a violin. They found the best piano teacher in town. Their home was filled with music. They would help to foster the talent that they now knew he must have.

Years later, the parents sat in a full music hall watching their son, the virtuoso perform. They recognized the man next to them as the doctor they had seen so many years before. They re-introduced themselves and reminded him that their son had been diagnosed with RJ Syndrome. He looked at them blankly. The mother prodded, “You remember, his long fingers?”

The doctor laughed. “Oh, that? I made that up. I just didn’t want you all to feel badly about his fingers. I guess it all worked out.”

It’s all about perception, I reminded them. You can tell me that my child has challenges but may well also have the ability to do something amazing or you can file her away under what you see as her limitations. How you choose to see the world matters. Especially when you’re the one in the lab coat.

There was more to the conversation. Much more. Students scribbled notes as I spoke. We nearly ran out of time. They asked insightful and interesting questions. Some I could answer. Some only Brooke can answer. Some I hope that maybe one day they will answer for all of us.

I passed around pictures. I showed them my girl. My beautiful little imp. I told them that learning about Brooke didn’t mean that they had learned about children with autism. Just one. One really, really special one.

I’m going to bed tonight feeling like I did something worthwhile today. I’m walking a little taller (and at five foot nothing that’s no small thing). I feel a little stronger. Little by little, brick by brick, we’re breaking down some walls. People are listening.


Essay originally posted on on Dec 9, 2008