Social media and electronic communication are notorious for misunderstandings. You read something online or in a text and your personal lexicon inserts the definitions for the words that are most comfortable for you. You have little context for the comment, and you have absolutely no non-verbal cues you would have if you were face-to-face with the speaker. In that way, technology should make us more in tune to how autistic people (or people with autism if you prefer) interact with the world.
I posted something on Facebook about severe autism a while back, and a good friend made an offhand comment. They know us well, they like our children, and they know a lot about Cullen’s personality. But the comment stung. It was said with humor. It wasn’t said with a mean spirit. I know enough about this person to know hurting me was never their intention. It kind of felt like they were chastising me for not being more grateful for how well Cullen behaves compared to someone with “classical” autism. Talking about it yesterday with my mom and husband, something rose to the surface of my heart that explained why such a little comment caused me pain.
When Cullen was an infant I did not know what I was “missing out on”. He was a quiet baby, he started sleeping through the night within a few months. He laughed and interacted with me through eye contact, and I spent the first 8 months with him 24/7. He didn’t babble, or make noises that I know now most babies do. He laughed and cried… and almost never played with toys I bought for him. Instead, he wanted to play with everything he saw me using while I worked. He would sit in a baby seat at my desk or in a play pen next to it. Phones, highlighters, paper, computer keyboards… all of his favorite things. Once he started going to daycare he picked up normal toys, but he still didn’t babble. It wasn’t until after 2 that he finally started talking.
I had quickly established a bed time routine within 6 months of his birth. One that is still the same, just evolved since growing into a little boy. He takes a bath, relaxes for a little while and then goes straight to bed with a hug, kiss, and a tuck (the tuck intensity depends on which end of the sensory pendulum he is on at the moment). For years this was the only reciprocated hug and kiss I got. He would accept hugs and kisses, but he would just lean toward me. Even when I asked for a hug I would get a quick lean, or if pushed a limp noodle arm around my shoulders. Interestingly, about a year ago I was unsure if kissing him on the lips at night was still appropriate at his age. I know there are lots of families that do the lip-kiss into adulthood, but I felt a little nagging that maybe it would be confusing for him as he reached an age to think lip-kissing was ok for anyone.. even friends at school. So I switched to kissing him on the cheek. He was distressed and asked me why I changed about 4 days in. I realized there were some things that he will outgrow on his own when he’s ready. We still had a conversation about boundaries and who it’s ok to kiss and where. (So far so good.)
Our lives are full of these little things. Little things that pile up to be a completely different “normal” than the family with “neuro-typical” kids. Yes, every family has their issues, but do your kids willingly hold hands with you? Do they climb into your bed when they have a bad dream or don’t feel well? Do they hug you for no reason or spontaneously tell you ‘I love you’? Do they snuggle up next to you and fall asleep while watching tv? Ours doesn’t. He follows a pattern, which means he does a thing because it’s required or part of the routine.
Here’s where the pain comes in. Our friends and family see (for the most part) a very well-behaved child. We have worked on his social skills and behavior to the point that he can handle going out to dinner, or spending half a day with friends without meltdowns, rude comments, or rolling on the floor. And that is HUGE!! We are consistently proud of him in that regard. He even surprised us one night after dinner at a friend’s house by offering to rinse all the dishes and load them into the dishwasher! This has been years in the making and we are ecstatic with the progress he makes. However, most people do not get to see the day-to-day disappointments, coaching and behaviors we still have to work on. No one sees how drained he is from a social situation, needing to spend hours by himself, or wrap up in a blanket and roll on the floor. No one sees the angry outbursts and depression that comes from days of trying to fit in at school and keep friends that actually enjoy his quirks and personality. He gets teased, he is isolated, and he does not make the connection that it is the way he treats that usually cause those things. And we don’t really talk about those things on a regular basis with friends. For friends without kids it isn’t interesting; and for friends with kids it is painful for us. Their normal is different from our normal. When I list his behaviors out loud it doesn’t sound like much. You have to live with Cullen to really understand how frustrating it is to live in a constant mode of one-step-forward-two-steps-back. They do not see the constant coaching. We are teaching around the clock. Repeating lessons over and over and over again until they become second nature for Cullen. We feel like complainers when we say what his behaviors are… like we should only be talking about how smart he is, or any of the other great traits he possesses.
For our family, going a day without wetting his pants, getting a hug for no reason, seeing him study my face for a few minutes and ask, “Why do you have angry eyes?” or just sitting on his butt at the table for longer than 2 minutes are all huge achievements that equal a baby’s first step or first word for us. We do not need to be reminded that it could be worse. We know how lucky we are that he can speak, and that he will be an independent adult one day. We know those things. We also know how hard, how draining and how discouraging what we actually deal with is. We don’t complain about it. He is an amazing kid making great progress.
We believe in bringing more awareness to the entire spectrum, not just high-functioning. We want respite care for the parents that need it. Whether they have a non-verbal child or one that argues every single thing. We want tools for the non-verbal kids, and therapies for the sensory distressed. We want our kids to be held accountable for their actions, while at the same time receive understanding for why they acted that way. And we ask for consideration for where we are as a family… comments and discussion that are meant to build up and support as opposed to making light of our struggle and challenges.