Saturday, November 02, 2013

Do me a favor

I don't like to advise people. I don't like being in a position of telling others what to do. But I am a person of strong opinions. And just this once I'd like to tell you to do something. And by "you", I especially mean those who love and support non-speaking autistic people of all ages.

I want you to promise that when you find yourself explaining to someone that you have no idea what your loved one knows or understands that you will also quickly add a sentence to explain that you believe he understands everything and just hasn't yet found a way to let the world know.

When you observe your loved one behaving in a way that you don't understand and he can't explain, promise me that you will believe that he is trying the best he can and that he is as frustrated -- probably more so -- than you.

When you see that she can't master skills that come easily to others and that dark fear that it will always be this hard creeps into your heart, promise me to believe in her ability to learn and achieve.

Please, just believe.

It's the most important thing you will ever do for the person you love.

Because if you don't believe that's just one more hurdle for this person to overcome. And believe me: they have it hard enough already.

Only 18 months ago I was working on 1:1 correspondence with my son, who was nine. When I asked him to hand me 4 plates each night before dinner to set the table, he would hand me plate after plate, counting each as he went: 1....2....3.....4....5....6..... and he would have kept going if I didn't stop him along the way. Each night it was the same. I assumed, wrongly, that Oliver didn't fully understand the 1:1 concept.

Now that Oliver can communicate I see that his difficulty was in another kind of processing. Maybe he couldn't simultaneously process the counting and the physical actions. Maybe he just felt too much pressure to get it right when his body and brain weren't working together. I now understand that his true challenges were masked by how hard he works to compensate for a body that doesn't cooperate. And even though my boy and I are pretty much inseparable, and I like to think I'm pretty observant, I had no idea that he had so much trouble controlling his body. I mean, if you're ever lucky enough to see this boy on a bike you'll know why. On two wheels he is grace personified.

It never occurred to me to load his iPad with math apps geared towards fractions, decimals and algebra but now that I see how easily he navigates them I regret that they weren't there to explore alongside the colorful counting apps that I thought he needed. I regret that I didn't give him the opportunities to display an interest in things that I assumed he wouldn't understand. I regret that my assumptions limited him when they should have been expanding his world.

I regret.

So now promise me that you won't also feel this deep regret at some point in the future.

Go now to that person you love and tell him that you believe.

Even if this person you love can't eat with a utensil. Even if she hasn't mastered toileting. Even if she can't manage the simplest communication system and even Yes and No are hard. Even if he never seems to be paying attention and can't sit still for a second. Tell him that you believe. And keep saying it until you are both convinced.

And on the days when it's hard, say it even louder.

Fill this person's life richly with thoughts and ideas. Read aloud what interests you and share your thoughts and opinions as though your words are a life line because they very well may be what is feeding his spirit. Play audio books before bed, choose classics that appeal to people of any age. Listen to the news together, NPR, TED talks, documentaries, and then talk about it at dinner time, even if yours is the only voice. Both of your lives will become richer.

Only 18 months ago I wasn't sure my son knew his last name or understood, exactly, the concept of birthdays or anything abstract, really.

Two months ago he wrote these words:  I couldn't tell people that I understood everything. People treated me like I just didn't think but that is all I did

So promise me that you will believe this also to be true of the person you love. Sustain your belief even on the hardest days -- because yes, it seems impossibly hard some days -- and say it loudly for everyone to hear. 

Because by making this promise the only thing you risk losing is regret. 


  1. Anonymous2:18 PM Wow. Love this.

  2. This was just what i needed to read today. Thank you.

  3. And can you post those math apps? I need them for a child who would LOVE them, and the school can't seem to understand the problem isn't the math, its everything else. :P

  4. Yes, yes, yes! I love reading about your boy and hearing what he has to say and seeing your insights about him. I learn every single time.

  5. Thank you for posting this. I have been at the end of my rope this week with my son's aggressive behaviors. I needed a reminder not to give up!

  6. Anonymous6:29 PM

    Thank you! Advice heeded and appreciated! I KNOW this and try to do this, but there are days....And, trying to get everyone who works with him to believe too?! This is difficult, but even harder to do if I don't fully believe in him myself.

    I do believe. And, I'm going to go remind him of that. Right now.

  7. Booloodoo7:45 PM

    I am a teacher for students with autism, and reading this made me cry because it is so very true. I saw this in a way yesterday that has made me want to tell the world. I have a 6 year old, non verbal student who uses a TouchtoTalk app to communicate. In the past few weeks he has had some technology issues with the device that has basically left him unable to communicate in any way beyond the primal; grunts, squeals, dropping objects, grabbing, and yes, sometimes hitting. Because he had something to say and NEEDED to be able to say it.
    Yesterday I gave some water colors to one of the other kids who is a pretty gifted artist. I then went on to work with the other child. He began requesting colors over and over in the same order: black,red,orange,yellow,green,blue,purple,brown.
    I had no idea what he was trying to tell me and assumed he meant the beads he liked to string. I kept saying "What do you want?" and he was getting more and more frustrated. He finally took himself and his device to the table where the painting was going on, and picked up the paint. It clicked in my head then: He wanted to paint. Not only had he been asking for colors; he had said them in the ORDER THEY ARE IN THE PALLET. He knew the color order. I am 47 years old and I couldn't do that even if I tried, and I have a pretty good memory.
    I was blown away. I handed over the paints and some paper, and this child began to paint for a half hour straight. This is a child who's attention span previously was 5 minutes, tops. And he painted an amazing collage of colors, using a brush technique I have only seen people who know what they are doing use. It was one of the most amazing things I have ever seen.
    I was so excited I kept babbling to my coworkers, none of them seemed to grasp how big a deal this is. He knew the color order. Clearly this is a gifted kid, and yet I wonder how many people dismiss him because he can't talk, and because he physically and vocally stims? Shame on them and anyone who makes assumptions or judgments because you NEVER know. Beethoven was deaf when he wrote his 9th symphony. Never sell anyone short simply because they don't fit your definition of normal. What's that even mean, anyway? Every single person matters, and everyone has a gift they are born with. We just have our own path to getting there, using what we were born with. And what is lacking in one realm may result in magic in another. Always believe, always trust, and always encourage. That especially. Believe and make sure the person believes in themselves. And let them know you hear them. Because sometimes the loudest words are spoken when not a sound is heard. Thank you for your beautiful words.

  8. Wow...thank you for posting this. For my daughter it is definitely the actions syncing with the activity too...that is the hard part. Integration, coordination.

  9. Anonymous10:50 PM

    I have three girls with special needs, they are 10, 4 and 18 months. I would just like to say YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!!!!!!!!!!!!!!!!!!!!

    That is all.

  10. Ayesha11:21 PM

    I'm printing this and putting it above my desk where I will see it every day. What a beautiful, perfect reminder. Thank you.

  11. I shared this. Thank you for writing it.

  12. Joeymom, there isn't anything in particular that I would recommend because I think it is awesome. We just downloaded as many free ones as we could that looked like they would work with his fine motor challenges.

  13. Thank you! oh thank you! for this reminder! I WANT to believe but haven't behaved like I believe...

  14. BooLooDoo, Thank you so much for sharing your story. My son will soon be going to school for the first time (he's 11) and I'm incredibly heartened to be reminded that so there are so many wonderful caring teachers in this world!! Your students are lucky indeed!

  15. JMitch, I think that yours is the best comment I've ever, ever received in the history of this blog. Thank you for taking the time to say that. It's means a lot to me. I hope you will come back and comment often!

  16. I support a little boy called T, who delights and frustrates me in equal measure, every. single. day.

    Some days, I crawl into bed, utterly defeated by my inability to reach him.

    Other days, I feel like I could fly, because he showed me the way -his way -for a brief, shining moment.

    This post, oh it's so beautiful and filled with truths. Thank you for such a stunning reminder that T is working so much harder than I am and that I need to tell him how amazing I think he is.

    I believe.

  17. Thank you...deep truths...beautiful writing

  18. Anonymous12:21 PM

    Thank you Christine. You inspired me with your words at a moment that I needed to hear that so badly. I have sent this to all of my family and friends and they are changed forever. You have put in words what's so hard to explain to others and what sometimes can be hard to explain to ourselves.

  19. Anonymous10:10 AM

    This is a really special post. May I include a link to this in a website I’m creating? It’s for parents/anyone who want to know more about autism and is a doorway to AUTISTIC voices/bloggers and neurodiversity friendly parents/professionals. The website is under construction but the facebook page (Autistikids) is up and running - full of links to the same type of posts. Thank you.

  20. Anonymous1:20 PM

    My son Joaquin reminds me daily that I must believe. Today, it took us 20 minutes of his yelling and fussing to finally put his bin of Batman toys away. "I can't do it. I'm not strong!" he'd cry out. After digging deep and swallowing gobs of frustration, with my help he placed it back in the dresser. Then, when I said he could play his Batman game on the Wii U, he went, turned on the TV, the Wii U, changed the channel input on the TV and navigated to the appropriate game using the controller all on his own. He's going to be 6 later this month. My challenge is to "believe" that I can find the motivators in his life to connect with me, and vice versa. His brain takes information in differently than we think to provide it, and its a fluid, evolving change as he ages. He's only recently become more verbal, and I'd like to think its the proactive parenting we are embracing, much like it sounds you are doing. I believe in you because I believe in me, and I know I'll never give up trying to make him a happy boy that enjoys life.

  21. If you know or love a nonspeaking or minimally speaking autistic student, please research movement differences in autism. Read Ido in Autismland and The Reason I Jump. We can learn so much by listening to the lived experience of autistic individuals. Let’s #rethinkautism!