Category: Parenting

After Camden’s tutor quit in September, my husband and I paused. Cam’s behavior was not disruptive during his one hour a week of tutoring, but he was obviously frightened. He clung to me as soon as we got to the tutor’s house and begged for me to stay close to him. It was like preschool all over again. Even though preschool only lasted a few weeks, it had traumatized him. We still couldn’t drive by his old school or speak of it without Cam becoming physically ill. When a school bus drove down our street, Camden ran to me or toward the house. He never actually rode the bus, but it reminded him of the highly acclaimed early intervention school that had made him miserable and destroyed his academic confidence.

The conventional wisdom for situations like the one with Cam’s preschool or tutor dictates the employment of exposure therapy. The idea is you keep a child in a stressful situation and through incremental, gradual, or prolonged exposure they adapt. Or, as people like to say, “they get used to it.” There is a lot of research that suggests this method works for adults and older kids who have a specific fear, for example, of elevators or freeways. What is less clear is whether this strategy works for people with generalized anxiety disorder, which afflicts most kids with Asperger’s. Moreover, I have not found any data to suggest exposure therapy works for autistic kids who are legitimately overwhelmed by a hypersensitive sensory system, hyper arousal, as well as an equally overwhelming difficulty deciphering social cues and social demands (cf, Intense World Theory). Unfortunately, therapists and school professionals routinely recommend exposure therapy to families coping with school anxiety and school refusal. We now know, however, that many autistic kids who are left in chronically stressful situations, such as inappropriate educational environments, tend to become more shut down over time and, sadly, kids with Asperger’s in particular, frequently end up with PTSD.

I learned about the problem of toxic stress and trauma in older Aspies and adult autistics from reading accounts of other parents and from adult autistics in group forums and blogs on the internet. The blogs by adult autistics have been the most helpful (cf. Recommended). I have also gleaned a lot of knowledge from the Facebook group forum provided by Asperger Experts. Conventional wisdom, advice from parents of neurotypical kids, and therapists have been the least helpful. On the contrary, most of their ideas have been harmful. Keeping my son in school when he couldn’t handle it led to misery, nightmares, aggression, anger, irritability, sadness, and family dysfunction. And this isn’t just our story; you read it all the time on the above mentioned blogs and forums.

My family and I had experienced enough. As much as I didn’t know how to help my son be happy and less afraid of the world, I had learned not to trust the so-called experts outside of the autism community.

My husband and I decided that above all else we wanted Camden to be happy and to have a loving, trusting relationship with us. Reading the work of happy, well-adjusted autistics had taught me it was possible. If tutoring reminded Cam of school and made him nervous and unhappy, we weren’t going to do it. We had already experienced a rough summer. We tried medication to help with Cam’s generalized anxiety, and it was a disaster. Camden’s early childhood years had not been the carefree, easygoing years we had wanted for him. Sure, there were plenty of good times and wonderful memories, but coping with constant anxiety and sensory overwhelm had taken a toll on our son. So, after considerable thought, we decided to take a year off from everything that caused anxiety or discomfort for Cam. We dropped tutoring, homeschooling, and all therapies. We decided we just wanted Cam to be happy, and we would do whatever it took to achieve that.

So, what has our year off been like so far? Well, to be honest, when it began, it was pretty boring. Without therapy, tutoring, or school to break up the day, I sometimes felt a little crazy. I looked at my datebook, and it was empty. That can feel uncomfortable, –untethered. For most of the fall, Camden and I watched a lot of public television. Most of all, Cam wanted to feel safe. Many autistic kids get easily overwhelmed, overstimulated, and over-worried. So, at the beginning of our year off, we just rested at home. On many days, Cam did not want to go anywhere, –not even to his favorite, quiet outdoor places. So, determined to see Cam feel good, we stayed home. I think I’ve seen just about every episode of Curious George several times, now. But, boring is not all bad. In the quiet moments of boredom, one finds relaxation, recovery, and creativity.

While Camden and I watched television together, we cuddled and laughed, and I could see Cam felt safe. We connected over tv shows and chose favorite episodes and characters. Soon we were laughing at the same things and exchanging glances of mutual satisfaction. We created inside jokes. Over several months, Camden grew more relaxed and comfortable. For a child who is accustomed to being hyper vigilant and ready for the next sensory onslaught, this pure relaxation was healing. From September through Christmas, Cam slowly began to let down his guard. All the activity of Christmas derailed us for a few weeks, but after we settled back in our quiet routine, Cam relaxed again and eventually started getting really silly.

Camden Hides his Lego Villains in Surprising Places

This silliness has been a great surprise and a great pleasure. Cam started imitating his favorite cartoon characters. He started making jokes and playing pranks on me and my husband. One of his favorite things to do is leave his Lego villains in strange places to surprise us. I jumped when I found an evil villain staring at me from inside our peanut jar!

Our schedule is never busy. We have a lot of down time, and I don’t force Cam out of the house when he doesn’t want to go. He gets easily overstimulated, so I go at his pace. But, we do have activities that fill our week. Camden regularly swims at a quiet, local pool with his grandmother. I go along and exercise or read and relax. We go for hikes in nearby forest preserves and parks. We are cooking a little more, and Cam has started helping with small chores around the house. We paint old furniture and try to make it look new. We play Minecraft, hide-and-seek, and go on “dinosaur hunts.” The dinosaur hunts are wonderful. Cam and his grandmother started them, and now we all do it. We look for dinosaurs and try to catch or shoot them, –typical five year old stuff. Sometimes the dinosaurs chase us and we run screaming and laughing down the trail.

Legoes and Legoland have become a central part of our life. We’ve spent many evenings in the basement building farms, ships, cars, and office towers out of Legoes. I think we have seen every movie and tv show related to Legoes that has ever been made! On uncrowded days, we visit Legoland. To be honest, I’m starting to hate Legoes! But, that is pretty typical mom stuff. If I step on one more pointy Lego block, I will lose my mind! 😉

Camden Aiming at a T-Rex

As Cam relaxes and becomes more outside of himself, another positive thing has been happening: he is teaching himself addition, subtraction, and basic reading. This kind of self-instruction is not unusual for autistics, but it is still amazing to watch. Cam loves numbers, counting, and thinking about large quantities. He’ll often ask basic math questions or check his arithmetic with us. He frequently asks what a word is on Minecraft or television, so he can know it for himself. He has always had an unusually large vocabulary for his age, but now he actively tries to ensure he understands the precise meaning of words and concepts. Cam is particularly interested in concepts related to time. The relative notions of being “early” or “late” fascinate him as do the topics of extinction, death, and birth. Some of these concerns are anxiety driven, e.g., birth and death, but much of it is pure intellectual curiosity.

So, despite our intention to make this a year off from academics, Cam is still learning. The curriculum is entirely idiosyncratic, however. It is driven completely by his interests. There is no structure to it, and it is no longer connected to school.

Cam is still not social outside of his immediate circle, but he has become increasingly social and loving within that circle. He tells us he loves us all the time and won’t watch television without a cuddle partner. I think Cam will get more social over time, but I still worry. Social skills are the perennial challenge of autism and Asperger’s. But, Cam deserves to be happy first. Being social is a secondary concern, and it is a challenge that causes him a great deal of fear and confusion. Also, the most important social realm for any human being is their family. And this year off has deepened and cemented our family’s social bonds. When Cam is ready to try being social in the wider world, he will do so from a solid base. He will feel safe taking social risks because he will have the security of his family behind him.

Cam stole my shower cap!

The year off has been going well. I’m glad we’ve taken this time to ourselves and given Cam a chance to lead us toward what makes him feel whole. I want to be honest, though. The journey has been two steps forward and one step back. The first few months were difficult. Recovery from stress can takes weeks, months, or years depending on the person and what they went through. Cam did not want to leave the house for most of September, and we had to honor his wishes to get to where we are today. The excitement and schedule disruption of Christmas was a disaster. Cam acted out, suffered stressful meltdowns, and was agitated for two weeks until we settled back into our quieter routine. I am not saying, “Take a year off; your kid won’t be autistic, and your family problems will disappear.” Cam will always be the quirky, lovable, unpredictable autistic person that he is. And, that’s good; we love him that way. And, like any child, neurotypical or autistic, he still has good days and bad days. We still have challenges with co-morbid issues like the oft-mentioned anxiety. I fear we will not truly be able to solve the problem of anxiety until Camden can tolerate antidepressants. We haven’t figured everything out. All I can say is Cam is much happier, and we’re much happier. We are are exchanging smiles and snuggles and going to bed at night happy in our home. This is important. When I see where we were, and I read about kids who are struggling daily, I realize that our happiness means a great deal.

We had to set up the right environment for Camden. For us, that meant defying conventional wisdom and the experts, and taking a year off. For others, it may mean finding the right classroom, the right teacher, or the most appropriate school. It may mean homeschooling, unschooling, or online education. I believe whatever environment you choose, a good way to see if you’re on the right path is to check your child’s happiness level. I firmly believe that all kids need to be happy to be healthy. A child stuck in an environment making him or her miserable is a child whose mental health is deteriorating. We owe our kids a happy beginning, a healthy start.

What do you think? What has worked for your family? I welcome comments!

I was on a Facebook forum for parents of kids with Asperger’s the other day, and one post really struck me. A mom was celebrating the fact that her son went to a high school football rally. It took a while for her to convince him to go, she explained, but he went. Apparently, he went by himself and stayed for the whole rally. He reported back that it was pretty boring and that he didn’t have a good time, but that didn’t stop her from celebrating his “achievement” and proudly sharing it on our forum. I imagine she praised him for his good work as well. In the comments, a dad said that he and his wife made their son go to a dance. They dropped him off and refused to pick him up for two hours. The dad reported that he had told his son that he needed to be more social. The boy had a bad time, the dad commented; however, that was o.k., he explained, because it was a learning experience.

The more I thought about these situations, the more upset I became. I can only speak for myself, but going to a high school pep rally by oneself and being bored the whole time sounds horrible. What a miserable evening. Why was the mom celebrating it? I know. I get it; she was celebrating that her usually introverted son was getting out and being social. But, is that really a good idea? Doesn’t that send the message to her son that he should be more like the crowd, i.e., more like the neurotypical kids enjoying the rally? Likewise, forcing a child to attend a dance in the naive hope that it would make him more social says to the child that he should behave more like the other kids. It conveys the judgment that the child is wrong for being who he is.

I’ve seen similar posts about family parties and birthday parties. Aspie parents are often delighted when their kids attend these events. This is largely due to the fact that their kids tend to not want to go these functions (there are exceptions, of course; some autistic kids do want to attend parties). The parents are then thrilled when their child does participate, and they make a big deal of it. What I rarely see is parents celebrating that their kid made an awesome village in Minecraft. There is a bias toward praising kids for behaving more like neurotypical kids. I can’t imagine that this would be good for a child’s self-esteem. I would feel confused if I got back from a pep rally that I found boring and irritating only to find my mom praising me for enduring it. I would wonder: am I supposed to be like the people who enjoy these events? Why is that so special? Why does my mom prefer their more outgoing personalities over mine?

Autistic kids can be pretty stubborn when it comes to changing who they are, –as they should be. It would be better to embrace their eccentricities rather than fight them. Parents are asking for a lifetime of conflict when they don’t. For example, at age five, Cam’s interests and preferences are already well defined. He is a dedicated nudist. He shuns footwear of all kinds. He hates babies, which he tells us regularly. He loves computers, tablets, phones, clocks, safes, and mechanical gadgets of all kinds. He doesn’t like dining out or going to the movies. He loves adults and sophisticated conversations, particularly conversations about paleontology. His preferences for recreation revolve around hiking, studying nature, and catching frogs. He is partial to sea creatures of the Cretaceous period, but is kind of “done” with dogs and other modern, domesticated pets. I don’t see him getting his hair cut ever again. When he is nervous, he likes to twirl his arms in large circles. And, if you really push him for a hug when he’s not ready, you might get a push instead. He likes his boundaries respected, thank you very much! Camden doesn’t just march to his own drummer; he is re-writing the music of the entire band, –which incidentally reminds me, his latest passion is swing music. This is not a kid who is likely to enjoy standing around applauding the football team. He has his own things to do. Perhaps the football team should cheer him on!

My husband and I celebrate Cam’s individuality; this is where he finds his bliss. We’re not interested in “fixing” him or curing him of anything. He is very social in his own way. We don’t care about him attending pep rallies or school dances. I could imagine him much happier in a lab or a music studio working alone or in a small group. And that would be great. We want him to be happy and proud of himself the way he is. I think this is the direction we need to move in as a community. We need to respect our kids for who they are and celebrate their achievements in the realms they have chosen as important. If we don’t embrace our kids for who they are, how can we expect the world to embrace them?