Our firstborn. From the moment he opened his eyes he has been anything but typical. He noticed patterns as an infant, had to sleep with at least ten books in his crib, started reading at two and a half, and began learning about exponents at five. This child, we knew, was different. Child development books got thrown out the window and were replaced by a fly-by-the-seat-of-our-pants approach to parenting that continues to this day.
Those that know us know that our son’s mind works in mysterious ways. He has an incredible memory for facts and yet perpetually forgets where he put his shoes. He has (enthusiastically) CLEP’d College Algebra but loathes writing anything longer than a sentence. He would rather change all the rules of a game but rigidly follows all other rules. He is brilliant. He is compassionate. He has absolutely no filter. Sometimes he’s awkward. He is a beautiful concoction of the atypical.
For a long time we attributed some of the quirky behaviors that have surfaced over the years to our son’s “giftedness”. We exhausted research on gifted minds and although many of the characteristics paralleled our son’s behaviors, there are others that didn’t. But he was social, had friends and was happy, so we let the concerns float on by until something would force them to bob to the surface again. We thought that some of our concerns might dissolve with time and maturity, but they didn’t. Some behaviors actually intensified and a few new ones popped up. So, at his 10-year check-up in January I decided to finally voice our concerns to our son’s pediatrician. We were referred to a highly reputable developmental pediatrician about 3 hours away, and on March 20th we spent all day with her in consultation and evaluation. Recently, we met with her again over the phone and she revealed his diagnosis: High Functioning Autism, specifically what you and I know as Asperger’s Syndrome, along with borderline ADHD and obsessive compulsive tendencies. [Technically, in the United States Asperger’s is no longer a diagnosis, according to the DSM 5; it is now all under the umbrella of Autism (although the UK still recognizes is as a separate diagnosis). But we will continue to use the term–something encouraged by our pediatrician–because we feel that it best describes our son. Asperger’s kind of brings along a specific set of expectations that, for the most part, people generally understand and is a bit different than only using the term Autism. So, in short, my son has Asperger’s, and that is what I will be using for the rest of this post.]
His diagnosis will either surprise you or it won’t, depending on how well you know him. If you’ve spent any good length of time with my boy you probably won’t be too surprised. But if you’ve only been around him a little, it may seem a little shocking, especially since he is a pretty social person. If you saw the ins and outs of the day-to-day as we have, though, you’d see pretty clearly.
…a highly sensitive person, especially to sound and light. As a young child my son was terrified of loud sounds and is still bothered by them. They had a dance at the youth center recently, and the entire time he didn’t step one foot in the gym where it was held because the music was too loud. He has refused to go out and play at times because it was too sunny. I will never forget the time I took him to a friend’s birthday party when he was around 6 or 7. It was pirate-themed, and as soon as we drove up to the house we could hear the pirate music and the kids chanting. When we entered he was asked to put on a pirate costume and my son shut down. The loudness of the music and chanting had sent him into sensory overload and he began bawling. I took him to the bathroom where he sat for about 45 minutes before finally being calm enough to join in with the others. He had a good time after that, but it was just too much all at once. He’s also sensitive emotionally. He never likes to see anyone get hurt (although you’ll see later that in real life, his reactions to that are detached). He’s walked out of Disney movies because of this before.
…a very literal boy. I’ve had to spend awhile teaching my son figurative language because it just doesn’t come naturally to him. Word choice is important and sarcasm can make him frustrated. My husband comes from a long line of sarcastic folk, so we’ve had to explicitly teach our boy what it sounds like and do a lot of examples/role playing. Every once in awhile he’ll say, “I sense you are using sarcasm…” I just love him. His literal brain also gives him the urge to correct people, no matter who they are. Yes, he was that kid in class correcting the teacher. He never meant it in an arrogant way; he truly thought he was helping out.
…difficulty with empathy. My son has a hard time feeling or understanding where others are coming from. I’ll never forget a time when his younger brother fell down in the house and hurt himself pretty good and my oldest son just stood there watching. Absolutely no reaction whatsoever. When I asked him about it he got frustrated and said he didn’t know what he should’ve done. I explained what the empathetic reaction would’ve been and from then on he would do exactly what I had described. I could tell it was scripted, but he was trying. We have many conversations about empathy in different situations. It does not come naturally, but he does listen and tries to understand.
…a lack of social skills. My son is social and will go up to kids and ask to play with them with no problem. However, he doesn’t “read” people well, if that makes sense. Where you and I might be able to sense when it is time to move on to a new subject or understand when to pause and listen to someone before moving on, those cues are lost to him. He also has no filter. Ever since he was little he’s just said whatever comes into mind, regardless of who we’re around. One time there was an old lady sitting next to us and he said, “Mommy, her arm looks similar to a brain.” Talk about turning red! He was just stating his observations and did not think twice that it might not be appropriate to say that out loud. He did–and still does–this ALL the time. Sometimes I’m on pins and needles when we go out because I don’t know what is going to come out of his mouth!
…little situational awareness. He will blurt out with unusual sounds and facial expressions for no apparent reason, regardless of the situation. If we’re in a meeting, a formal event…there is not much of a differentiation.
…clumsiness. My son is not well-coordinated. It took a looooong time to teach him how to tie his shoes and he still has trouble riding a bike. He falls often and moves or runs awkwardly sometimes. He’s never been into sports or any kind of intense physical activity.
…strict adherence to rules. If there is a rule in place, expect my kid to abide by it as if his life depended on it. Rules are meant to be followed and provide a feeling of safety.
…obsessions with subjects. My son’s always been in passionate study of something. Once it was black holes, then it was chemical elements, of course there is ALWAYS and forever Minecraft. He has to know every fact related to the subject he’s into. It may last months or years, but when he’s in it, it is ALL he thinks about.
…difficulty with change. This is definitely a challenge since we are uprooted every few years with the military and our routine is often interrupted with TDYs or long work hours. But what we’ve found is if we prepare him for the change, it’s not a problem. But if we do not and bring on a change without telling him the details, he gets very upset and takes it personally. If I tell him we are going to the grocery store and I first go to the post office before going to the grocery store he will say, “But why would you tell me we were going to the grocery store if you were going to the post office? Why would you keep that from me?!” This has resulted in full breakdowns before. It’s getting better, but it is always an issue and something we have to be mindful of.
…speech disfluency. Since he began to talk my son’s had a thing where he pauses in between words often when he’s talking. We’ve been reassured a few times that it’s not a speech impairment of any kind, just an unusual speech habit. Kids with Asperger’s have been known to have them, and the developmental pediatrician told us that this was his.
…some obsessive-compulsive behavior. My son has to have his body in symmetry. If his left leg itches, he has to scratch the right one in the same exact place. This bothers him a lot to the point where he will now whisper “off” over and over again for it to go away. I didn’t realize this until recently when I heard him whispering something over and over and he explained what he was doing.
…a very picky eater. My son is one of the pickiest eaters I know. As a small child he refused to let me heat up his frozen waffles (and prefers them frozen to this day). He doesn’t like seasonings or strong flavors and he’s sensitive to textures. Feeding two sensitive children (in opposite ways) is quite the challenge in our house!
But here’s what you’d also see:
…an enormous heart. On average, our son tells us he loves us about 20 times a day. He still loves to cuddle (when he initiates it) and he’s very gentle with animals. And that emotional sensitivity exists because he cares on a deep level. It may not be easy to see on the outside sometimes, but it is there.
…an incredible mind. I am fascinated daily by how my son’s brain works. The ways he solves problems, how he thinks through them, the connections he naturally makes between concepts, his memory of facts…when he’s in his element it is an amazing thing to witness.
…excitement for learning. Teaching this kid is so easy because he LOVES learning! Some subjects can be a challenge, but overall he is a sponge, soaking up everything with gusto. He has always been insatiably curious.
…creativity. My son is constantly making up new games, changing the rules of favorite games and wanting to try them a new way, coming up with new “worlds” to make on Minecraft…he’s full of ideas!
…a strong since of fairness. In my son’s eyes, everyone is the same and should be treated fairly. He has a strong sense of justice, so if he sees someone not treated fairly, he will speak up about it.
…a love of music. My son loves music! Maybe it’s because I put earphones filled with classical music on my belly when I was pregnant with him, but he is passionate about it. He’s just now getting into piano and loves it! It makes my own musical heart very happy!
…him standing his ground. Peer pressure is non-existent for my kid. He likes what he likes and what others think really isn’t his concern (which is a challenge for me because I’m the complete opposite!).
What I’ve learned from doing research on the many facets of both of my sons (and myself) over the last few years is this: everyone has something going on. Whether it is sensitivities, obsessive-compulsive tendencies, chemical imbalances, anxiety, communication difficulties, whathaveyou, I think we are now starting to better understand that “normal” is an illusion. Of course, there is a range for behaviors that is considered ‘typical’, but no one in this world is ‘normal’, and I refuse to use that term in my house. At least, that is how I see it. So when I think of my son having Asperger’s, I just see it as one of the many beautiful facets that makes him the incredible being that he is. Yes, it is a neurological difference, but it doesn’t define him. Yes, it will shift the way we approach situations with him, but it will not be a crutch. He will thrive and do spectacular things and change the world as we know it, and we will support him however we possibly can.