I recently read, and loved, two articles:
- 10 Things Autism Parents Wished You Knew ( https://www.autismspeaks.org/blog/2014/04/01/10-things-autism-parents-wish-you-knew), by Kristi Campbell, the author of the blog “Finding Ninee” (http://www.findingninee.com/), and
- 10 Things Every Child with Autism Wishes You Knew (https://www.autismspeaks.org/family-services/tool-kits/100-day-kit/ten-things-every-child-autism-wishes-you-knew), which is an excerpt from the book (same title) by Ellen Notbohm (purchase the book on Amazon: https://www.amazon.com/Things-Every-Child-Autism-Wishes/dp/1935274651)
Both writers (who are both moms to boys with autism) touch on some really good stuff, the biggest overlapping idea being this one: every person with autism, and every parent (or grandparent, caretaker, sibling, or friend or family member) of a person with autism, is unique. You know, kind of the way us “regular” people are unique. So while I highly recommend both of these articles to, well, basically everyone, there are still more things that I’d like our own friends and family to know about MY son with autism.
The idea to write this post popped into my head when my uncle came to have lunch with us, and it was the first time that he’d seen Alex since he was a baby. When Alex was off jumping in the other room (a LOT of jumping goes on in our house), my uncle asked for a short synopsis of what he should know about interacting with Alex before he came back into the room. It was such a simple question, but one that no one had thought to ask me yet! I gave my uncle a few points that I thought were big. He listened, and after giving Alex his space for 15 minutes or so, Alex was smiling and even making some eye contact with this guy he had no recollection of meeting before. A HUGE thing for our son who often regresses in many ways when meeting new people, and shies away from eye contact even with closer friends and family members. A 30-second conversation had made such a noticeable difference in how Alex behaved with someone who was essentially a stranger to him.
It did occur to me that people might not want to even ask the question that my uncle did for fear of starting an awkward conversation. So, this is a quasi-brief summary of what I would like other people to know about Alex- and maybe- hopefully- there will be some pointers in here that other parents of children with autism, or other special needs, can borrow for their own friends and family, too:
- First and foremost, don’t feel like you can’t ask questions! So little is known about autism in general that there honestly are no ASD “experts.” Even people who have studied it for years and who know many individuals with autism only know a limited amount and would need to ask the same questions when meeting someone new who has autism. It doesn’t need to be an awkward conversation, either…like most parents, my husband and I can’t get enough of talking about our kids (I’m sure to an annoying degree to most..sorry not sorry). Just because one of our children happens to have autism doesn’t mean we enjoy talking about him any less. Honestly, we are usually grateful for the opportunity to explain a little bit about him and what makes him tick.
- Get most of your question-asking out of the way with my husband and me, not with our son. Nothing shuts Alex down faster than a bunch of rapid-fire questions (How old are you? What does your shirt say? How do you like being a big brother? When’s the last time you took a poop?). This may be a typical way of interacting with a 2-year-old but Alex is not your typical kid (and I’m not really sure how many toddlers actually enjoy all of these questions, if I’m being totally honest). Comments as opposed to questions are the best way to make Alex feel comfortable and to encourage a reciprocal interaction (I hear you’re turning 3! I like your dinosaur shirt! I bet you’re a great big brother! I don’t really care when you last pooped!).
- Autism is not a 4-letter word. You can and should say it to me and in front of my kid. I’ve read many stories by adults (mostly women) who didn’t receive diagnoses until they hit their 30s or 40s, and the common sentiment is that they feel relieved to have an explanation for why they think and feel the way they do. I would much rather my son understand more about himself and why he might do things differently from other kids from the get-go, instead of wondering how to broach the topic for the first time after he has had to deal with extreme anxiety for lack of understanding in the meantime.
- Interact more, talk less. This may sound like an oxymoron but I promise it isn’t. People on the spectrum often have communication difficulties, but these stem from the impairments in social interactions that are at ASD’s core. Focusing first on engaging in positive, reciprocal interactions that don’t involve a ton of language can actually help improve use of speech in the long run. As soon as we started consciously doing these two things, we saw noticeably positive changes in Alex’s mood, and the regression of his language finally started to slow down and make a gradual U-turn. Whereas the majority of children are able to learn language from regular conversation, many late-talking children (particularly those with ASD) need to have clear, concise statements that are repeated many times and with visual supports (this is a huge piece in interacting effectively with Alex and other kids with language delays who are on the spectrum, so I’m hoping to write a more thorough post focusing on this in the near future). The biggest and most immediate change, though, was in Alex’s responses to us. He had been withdrawing more and more since around his 2nd birthday, when his speech delay had started to grow more obvious, but when we started to focus on having fun with him again and really enjoying our time together instead of talking “at” him constantly to try to improve his language skills, Alex started to approach us more for playful interactions. Best of all, the growing tension in our house faded and we started laughing with our son again.
- He understands a hell of a lot more than he can say. We are trying as a family not to talk about certain heavy subjects in front of him– Alex may not look like he’s listening, but his mood is clearly affected when he overhears anyone talking about him as if he isn’t there. Chatting about how stressed we are or about how hard it is getting the right services in place some topics we are trying to avoid discussing in front of him (though we recognize how unrealistic this sometimes is seeing as it’s a pretty hot topic in our house right now!).
- You don’t need to look away when he does something weird or gross. Kids do weird and gross things. This is not specific to autism. When a toddler starts licking the windows or suddenly farts loudly and unapologetically or pronounces the word fish as bitch –LAUGH! Autism does not make these things not funny.
- Don’t take a lack of eye contact to mean he doesn’t like you. Eye contact is overwhelming for most kids on the spectrum, but it doesn’t mean they aren’t interested in you. I explained this to my uncle in a way that might sound weird or wrong but it’s the best analogy I could come up with: like you would do with a shy dog, let Alex come to you when you first meet him. A quick and friendly, “Hi, Alex!” with a 2-second glance in his direction, followed by silence and chatting up his mommy or holding his baby sister will help make him more comfortable and give him the chance to move at his own pace.
- He’s smart. Autism is characterized by social and communication deficits, along with odd or repetitive behaviors. These deficits can obviously have a negative impact on learning in certain areas, particularly any that involve imitation of others or following verbal directions. However, many children with ASD, Alex included, are also highly visual learners. Alex is a wonderful artist (though he does occasionally like to stop and eat the paint while he works). When he “plays” the piano he often comes up with melodies that actually sound good (as opposed to your typical 2-year-old banging). Alex can stack blocks as easily as any other kid his age. As I’ve mentioned in a previous post, Alex was able to learn his alphabet without us teaching it to him because of a TV show that uses visuals. And while Alex’s use of functional speech is extremely limited, his memory for certain words honestly freaks me out sometimes. This kid will go all day without saying one comprehensible word and then will randomly point to my knuckle and, clear as day, announce “knuckle,” like it’s no big deal.
- Accept him for who he is and just have fun with him! Alex doesn’t want to be pitied; he wants to play outside and ride his tricycle and wake the baby up too many times by purposefully jumping next to her crib. He’s got a different way of communicating and gets overwhelmed by a lot of noise sometimes but for the most part he is just your typical charming, stubborn, and inquisitive little boy.
For those feeling like there should be a 10th item, sorry…I guess this is my way of being original?
As with any of my posts, please feel free to share!