“Autisms,” The New Thinking on Autism

IMG_1875 (1)When I first learned about autism, I imagined a nonverbal child rocking in a corner, –cognitively impaired and socially and emotionally unreachable. Later, I learned about Asperger’s. I had met a handful of eccentric students when I was in graduate school. They were clearly brilliant, but they seemed to lack social skills. One student in particular, Rodrigo, had become a friend of mine. He was the smartest person I had met in my program, but he seldom made eye contact, was unusually loud, often abrupt, and had a hard time keeping friends. Yet, he was also generous and loyal. He loved to talk, and we sometimes spent hours discussing philosophy. The thing we bonded over was trouble with the library; we both had excessive fines. I had somewhere around a hundred dollars in fines. Rodrigo had over a thousand dollars! He had never returned one book in the full year he had been at school!

I didn’t know the term Asperger’s back in 2001 when I met Rodrigo, but as soon as I learned of it years later, I knew he had it. Upon reflection, I realized I had met several other people with Asperger’s at school as well. Some time between 2001 and 2010, when my son Camden was born, autism and Asperger’s had begun to enter into our cultural consciousness. Around the time of Camden’s birth, I still thought autism was an affliction of the mind that rendered children devoid of emotion and communication, but I imagined that Asperger’s was more of a charming personality quirk. Both conceptions turned out to be completely wrong.

Today, researchers are increasingly using the term “autisms” or “autism spectrum disorders.” We now realize that autism has so much variety and so many different manifestations that it is impossible to see it as one entity. There is no one gene or genetic mutation that causes autism. We don’t have one environmental pathogen we can point to that changes an infant’s development in the womb. There isn’t even a real distinction between Asperger’s and autism. In fact, Asperger’s was dropped from medical terminology in 2013. Asperger’s is really just short hand for autistics who are highly verbal. But, a highly verbal autistic can have more severe social struggles than a nonverbal autistic.

The unifying factor for diagnosing someone with autism comes down to two main criteria: social impairment and a need or preference for sameness or repetition (and/or resistance to change). An acute vulnerability to sensory overload also seems to be a defining characteristic, but that is not a required condition for diagnosis. There is nothing about a lack of empathy or emotion or an inability to make jokes or have a sense of humor. Those old ideas of autism are rooted in misunderstandings, myths, and bad science.

IMG_1869Under this new way of thinking, countless varieties of autisms exist. There are nonverbal autistics who are highly intelligent. Some of them have brilliant blogs and communicate beautifully, –just not through speech. There are autistics with average intelligence and high creativity. There are cognitively impaired autistics who have low IQ’s but are less impaired socially. Anxiety disorders afflict many autistics, but not all. Many have ADHD, seizure disorders, or Tourette’s; others don’t. Some seem to have savant-like abilities in music, math, or art. It is impossible to list all the variations; neurodiversity is endlessly diverse.

As a culture, we are just starting to absorb this information. I have had dozens of people including therapists, teachers, and doctors tell me that my son Camden could not be autistic because he is so talkative. It will probably take a while for the generalists to catch up with the specialists. I have found neurologists and university researchers to be the best people to go to for a diagnosis and assistance. Camden was diagnosed by a pediatric neurologist at a children’s hospital.

It is kind of funny to me now that people used to say that Camden was too talkative to be autistic. He was actually what is now called “hyperverbal,” a subtype of autism that tends to correlate with high anxiety and high intelligence. For the first few years of his life, Camden talked non-stop. I don’t mean this casually; he talked and asked questions in a manner that seemed compulsive. It was exhausting and amazing at the same time. At age three, his vocabulary tested at the first grade level. Later, as Cam’s anxiety decreased, so did his compulsive talking. Now that we are careful to keep Cam’s stress levels low, he still talks an above average amount, but he is no longer hyperverbal.

There are different degrees of social impairment among autistics, and different environments can impact an autistic’s ability to function socially. For example, Cam functions well socially with his family, or with one or two people at a time. In those contexts, Camden seems relatively “normal” or neurotypical. But, Cam finds conversations with three people difficult or, quite often, unmanageable. Moreover, parties, large groups, and crowds are almost impossible for him to navigate. Those environments will cause him to shut down completely, act out, or melt down. The sensory overload or overstimulation is too much. This is not something he can get used to. His brain is set up differently. His brain may mature out of it to some degree, but it is not something we can rush. Other autistics have social challenges but still function relatively well in group settings. A friend of mine has a great blog, Tales From the Butt, that describes her autistic son. He is much more easy-going socially than Cam and has found great success being mainstreamed at school. School was a non-starter for Cam. He does better learning on his own at home.

It is not hard to imagine that the new conception of “autisms” has huge implications for education. Given the variability of autisms, autistics’ needs are bound to be as diverse as neurotypical children. One program, one type of school, or one special education classroom is unlikely to be able to adequately serve all types of kids with an autism diagnosis. If one considers the prevalence of co-morbid conditions existing with autism such as ADHD, Tourette’s, anxiety disorders, mutism, speech impairment, or seizure disorders, one sees even more challenges to making the school experience tolerable for autistics, never mind successful. It is no wonder that specialized schools, online education, and homeschooling are so popular among families with autistic children.

“When you meet one person with autism, you’ve met one person with autism.” This is a popular saying in the autism community. The stereotype of an unreachable child rocking in the corner is not helpful. Although, some autistics do like to rock to self-soothe, and some children do retreat to a corner when feeling threatened, that anachronistic image cannot begin to accurately describe the incredibly diverse autistic population. Furthermore, the notion that autistics lack empathy, a sense of humor, or are devoid of emotion is equally problematic and cruel. Those are myths that reduce autistics and Aspies to inhuman caricatures unworthy of love and respect. The stereotype of a quirky, eccentric genius is limiting as well. Autistics who identify as having what used to be called Asperger’s are diverse, too. And, being quirky doesn’t do justice to the struggles some endure from being easily overstimulated and overwhelmed by social situations and sensory demands. When you meet one person with autism, you truly have gotten to know one experience, one perspective, and one kind of autism.

Further Reading

‘Autisms’ a More Appropriate Term than ‘Autism,’ Geneticists Say

National Institute of Mental Health, Autism Spectrum Disorder

Neurotribes, The Legacy of Autism and the future of Neurodiversity

 

 

Advertisements

Conversations in My Head about School

FullSizeRender
Collecting Rocks

I have begun thinking about next year. Cam will not be going back to school. We get that now. He still has difficulty processing relatively quiet days. So, the overstimulation and social demands of school, coupled with his high anxiety, would mean disaster. Please don’t tell me to “just try it.” Please don’t say, “all kids have to go to school.” Don’t say, I’m “isolating” him. Don’t tell me how hard it is going to be “on me.” My husband and I thought of all of this. For long stretches, it seemed like all we thought about. When people offer this kind of advice, I want to reply: “Use your imagination. Of course, we had these thoughts. We considered the obvious drawbacks. This was not our first choice.” This is not something we decided lightly, on a whim, as if it was on the menu at the pancake house.

The stakes are high. Cam’s mental health is at stake. And, we wouldn’t be so far outside the box, so very outside that we miss the box, if we hadn’t thought everything through. Cam has autism, not a cold. We believe asking him to tough it out in school is beyond his capabilities right now. Yes, I know some kids with autism do o.k. in school. Of course, I know that. But, a lot don’t. A lot are hurt, psychologically damaged, and broken. Trust me when I say Cam is at risk for that kind of outcome. Don’t ask me to pretend that isn’t the case, so everything can seem fine. It isn’t fine.

So, what do we do? People sometimes look at me as if I don’t know what I’m doing when it comes to raising Cam. I want to yell, “Bingo! I don’t know.” That’s just the problem. I don’t really know.

Yet, I do have some information. I have studied this stuff. I am past the period of reading several hours of research a night, but I’m still current on all the recent thinking. And, of course, I know Camden.

I know when Camden is happy, and I know when he is not. And, by unhappy, I don’t mean simply crying or whining or expressing displeasure. I mean very bad things: hurting himself, hurting us, hitting the dogs, throwing furniture, tearing up his room, kicking the door, banging his head, screaming, and cursing like a sailor. When a child hurts like that, you re-evaluate everything. Everything is on the table. Conventional expectations lose their importance. Happiness is not simply a pleasure; it is a marker of mental well-being. Learning to read seems trivial. I know that sounds strange, but it truly is. Keeping Cam safe, safe from the disorder in his head, from an inability to process a world that is often experienced as threatening, chaotic, and nonsensical, is all that matters. Learning about Pilgrims, finger-painting, duck-duck-goose, making maps and pie charts, all comes second. I wish I could explain that in a compelling way to concerned family members and disapproving teachers and therapists.

IMG_1736So, the plan is to keep Cam home next year. We will give tutoring a try again. If we could add one hour of tutoring a week each year, Cam will gradually gain a solid academic base. Our main goal will continue to be happiness and stability for Cam. As he grows more comfortable in the world, more trusting of people, and more confident in his ability to be present in groups, we will add to his education. And, at that point, we will re-consider school.

A Year Off, Unschooling

 

tractorAfter 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.

FullSizeRender (1)
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
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.

IMG_1539
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!

Further Reading

Autistic Shutdown at Unstrange Mind

Intense World Theory, at WrongPlanet.com

My Anxiety is Not Disordered, at MusingsofanAspie.com

Why We Stopped Most Therapies, at RespectfullyConnected.com

Neurotribes, The Legacy of Autism and the Future of Neurodiversity

HomeI just finished reading the new, groundbreaking book on autism called Neurotribes, The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman. This is a GREAT book. It is a must read for anyone who is autistic or loves someone who is autistic. It opened my mind like no other text has. It also confirmed what I suspected after I first encountered Asperger Experts: If you want to understand autism/Aspergers, you need to include the perspective of people who are autistic or have Aspergers themselves. There is no substitute. For decades, neurotypical therapists and doctors have gotten it wrong and have done more harm than good. Now, with the neurodiversity revolution, we are finally respecting the real experts, i.e., those who live with autism. If you read one book on autism this year, make it Neurotribes.    

~Lou

Our Experience with Professionals

I wrote the comment below on an Asperger’s forum today, and I got several “likes,” so I think it probably resonated with a lot of parents who have been in and out of therapist’s and doctor’s offices like we have. I made some minor edits to the text to clarify information, but here it is.

In response to a mom who posted about how frustrating it can be to work with professionals:

I totally feel your frustration! We’ve had mostly bad luck with doctors and therapists. My husband and I are taking a break from professionals for a while. Only a couple have been helpful; most have had no idea what autism or Asperger’s is really about. I’ve found more answers reading Facebook forums and blogs about autism and Asperger’s. I especially like Asperger Experts Private Group and their main website. Also, I get the most useful information from articles by actual researchers and specialists (see sfari.org), and reading work written by Aspies themselves (see Musings of an Aspie). It’s only people on the front lines who truly get it. People with generalist’s backgrounds who have read a couple chapters on autism are mostly guessing or applying a neurotypical lens to an autism-based issue. More and more, I feel like I have to trust myself and trust that nobody is going to work harder at understanding my very complex son than me or my husband.

~Lou

Behavior is Communication

on bridgeCam is happy again. He is back in his little bubble. Out of the quiet, I hear him laughing and jumping around. For a mom, a child’s joy brings the deepest happiness. When her child is in pain, a mother feels no deeper despair. This is a story about how Cam found his way back to joy and brought his family with him.

Last fall, when Cam was three, our family went through a stressful period. Our basement flooded. We had to clean out the damaged walls and floor, then cope with contractors on and off for several months. It was a busy, noisy, and difficult time. Our dogs barked from morning ’til night. To get out of the house and make new friends, I signed Cam up for three classes: art, tumbling, and Spanish. I thought the classes would be a fun break away from our messy construction zone of a house.

Cam hated the classes. In tumbling, he kept running out of the gym and into the hall. I had to chase him before he ran out into the parking lot. While the other kids milled around, laughing and talking, Cam avoided them and clung to me. Art wasn’t much better. As soon as we sat down, Cam begged to leave. He couldn’t focus on the crafts and pulled me toward the door. Spanish was a non-starter. After one session of heavy immersion, Cam walked out exhausted and demoralized.

At home, Cam hated the noise from the workers. He became increasingly hyper and aggressive. His moods were volatile and angry. He began repeating things we said (something I had never noticed before), but he couldn’t seem to focus or respond. Although Cam never really had temper tantrums, he had meltdowns that were so dramatic they broke our hearts.

My husband and I had no idea what was happening. Cam had always been a challenging and excitable child, but this was beyond anything we had seen before. We had never thought Cam’s hyperactivity was a big issue. He was three, and we knew a lot of toddlers who were hyper. Furthermore, Cam was so smart, we thought he was developmentally on track. His observations and questions about geography, plumbing, and architecture blew us away  His memory was detailed and accurate. Sure, there were eccentricities. And, Cam was extremely shy, but nothing seemed “wrong” to us.

Still, given Cam’s recent behavioral concerns, we thought he might have ADHD. We consulted a therapist. The therapist dismissed the diagnosis of ADHD and suggested we implement stricter discipline with more time-outs. She was certain we had been too lax. If Cam wouldn’t stay in time-outs, the therapist explained, we should hold him down in a bear hug, wrap our arms around him, and keep him locked against us. A little surprised by this advice, but not having answers of our own, we tried the therapist’s method for a few days. Cam’s behavior worsened.

We quickly saw the absurdity in the therapist’s approach and left her practice. Yet, I had to wonder: is this how psychologists and social workers are trained to deliver therapy for children? Is this normal? Our therapist seemed nice, but her emphasis on “consequences” appeared superficial and cruel to me. I wasn’t a professional, but I could see my son was in pain. “Shouldn’t we try to figure out why he is so unhappy?” I thought. Cam was waking up several times a night, and his nightmares were increasing. Our family was in crisis. Holding our son in a restraint hug was not helping anyone, most of all, Cam.

Not knowing what to do, and going on a hunch, I decided to remove as much stress from our lives as possible. I canceled Cam’s classes. My husband told the contractors to skip the finishing touches and end their work. I stopped taking Cam to the grocery store, Target, or anywhere else he tended to act out. We stayed home as much as he wanted. Contrary to the therapist’s suggestion, I grew more lax. I let Cam watch t.v. for several hours at a time. While he watched t.v., I held him or sat next to him. My only goal was that he become calm and happy. We hung around the house, and Cam helped me clean. We went for long, peaceful car rides. We visited his grandmother, –anything he suggested. We talked as much as he wanted or as little as he wanted. I responded to any aggression with patience. I had always co-slept with him a few times a week, but I began doing it every night.

Within two weeks, we saw a change. Cam’s nightmares grew less frequent and less severe. He began to sleep through the night. He became calmer and experienced fewer meltdowns. His aggression became almost non-existent. Cam was in a little bubble of calm, quiet and love. He was happy again. We were happy again. It felt good to feel safe as a family.

We lived like this for a couple months. After a while, though, we began to worry that we were overprotecting Cam. We were happy that he had stabilized, but we needed to learn how to get Cam back in the world.

We consulted another therapist. This time Cam was diagnosed with generalized anxiety disorder and possible ADHD. For a three year old, those are big diagnoses. I was stunned. Clearly our little guy had been carrying a heavy burden mentally and emotionally. His behavior had been a sign of overwhelming fear and stress. He didn’t need more time-outs or more discipline; he needed more quiet, more nurturing, and most of all, he needed to feel safe.

We continued providing that safe environment for Cam. Meanwhile, our second therapist helped us reduce Cam’s anxiety while slowly moving him back into activities outside of his bubble. Somehow, however, we knew something more was going on. Cam was happier, but his behavior was telling us to dig deeper. It was then that we took Cam to a pediatric neurologist. In February of last year, we learned that Cam had autism. Finally, everything began to make sense.

Through this experience, my husband and I learned that behavior is communication. Cam taught us that behavior is communication. It took us a little while to understand what Cam’s behavior was saying, but eventually we understood. Now, whenever Cam is getting overstressed, we let him go back to his bubble. We don’t force the world on him when he can’t handle it. We wait until he is strong and ready.

Autism is a brand new world for us, and as we make our way into it, we will be listening to Cam’s directions and watching for his signals. He’s the leader on this path, and we are so happy to be his companions.

~Lou

School is Not a Quiet Place

Camden hated school. It wasn’t just stressful for him, it was traumatizing.

Still, strangely, he went without a struggle, without tears. At first, I didn’t know what to make of it. The teachers loved him. He was in a preschool for kids with special needs, and he didn’t seem to present any special needs. He sat quietly. He obeyed all the rules. He didn’t speak unless spoken to. At recess, he silently ran around by himself or stood quietly near the teacher. Surely, he presented a nice break for the educators who seemed overstretched and weary with all of the other kids.

puzzleBut, Cam did have needs. And, those needs were not being addressed. How did we find out? Well, that will take some unpacking to describe.

Camden was only in school a short time last year. He began in April and finished in June. He would ask me not to make him go, and that was it. He frequently told me he hated school, but once he got in the car, he became quiet. I now realize that his silence was a cue to the beginning of the shutdown process.

Cam always walked quietly into school. He never fussed, but he ignored the other kids, and drew back from them if they came too close. His behavior was easy and agreeable, but disconcerting. Despite all the assurances from Cam’s teachers that he was doing great, I finally went into observe him during the last week of school (Cam’s seventh week in the program).

On the day of observation, Cam did not seem to recognize me. I came right up to him to say hello, and he just looked at me blankly and went back to looking down. I was shocked, and said “hey, sweetie.” After some blinks, he seemed to wake up. A big smile and look of utter relief formed on his face. I, on the other hand, held back tears.

The following August, school started again. Cam told me all summer that he didn’t want to return. Family and friends countered that Cam had to be in school, that “it was the best thing for him.” Family and friends always say this; it’s common on parenting forums, too. The idea of life without school for a child is unacceptable in our culture. I’m not sure why, but it is. I always loved school and stuck around for two master’s degrees, but it never struck me as necessary. Alternatives always seemed equally plausible and acceptable. Historically speaking, large public schools are a relatively late invention. Before that, accomplished, well adjusted people also studied our world independently, in small groups, through tutors, or with their parents. Schools existed, but a variety of methods thrived in parallel. But, I digress.

Back Cam went to school. Again, he entered the sterile and bright halls, quietly and without a fuss. He looked down and dutifully switched hands for the hand-off to his teacher. I was beaming. “Cam would be fine. I worry too much. That strange moment last spring wasn’t real,” I told myself. “Surely, Cam would do great.”

But this time it was different. After school, the first day, Cam was a wreck. He ran around the house, hit the dogs, charged into me and his Dad, jumped on us, and talked non-stop. He swore at every little annoyance. He grimaced at corrections and could barely take in anything we were saying. His echolalia seemed to double overnight. He compulsively climbed the counters and furniture. He would climb up on his playhouse, swing-set, or fort, anywhere with some height, and jump down as hard as he could. He wanted impact, –impact against the ground, against the dogs, against us, against everything. And, that was just the beginning.

Every day after school, Cam’s aggressive behavior escalated. He threw toys, food, pots, and pans. He hit me, his Dad, and the dogs. But, what broke our hearts, what made us cringe, was when Cam started to hit himself. For me, that was a turning point. I had never seen that before. I had probably decided at that moment to home-school, but I wasn’t ready to admit it. It was only the first week of school. Surely, things would calm down.

But, they didn’t. At night, Cam had nightmares, usually one or two a night. His sleeping patterns were tormented. He would awake several times a night and call for me. His moods were volatile and angry. The second week I kept him home several days just to catch up on sleep and to break the pattern of increasing aggression and irritability.

In the second week, we also reached out to the school with increased alarm. They reported back that Cam was a perfect student. They didn’t think he had autism, and they even recommended he start taking the bus and entering the school by himself. They expressed concern that I was babying him too much.

I was livid.

Clearly, there was a disconnect. I contained my anger and sent several emails pleading with the teachers and principal to help reduce Cam’s anxiety levels and to implement autism protocols to reduce sensory overload. We met with the principal, the school psychologist, and finally had a big group IEP meeting.

The consensus was unanimous among the educators: Camden didn’t have autism; He needed to be challenged more (i.e. we were coddling him), and any problems we were having at home were simply parenting issues that we needed to address. This was my favorite part (insert sarcastic tone): the teachers suggested we add more “structure, discipline, and consequences” and, of course, a sticker chart! I couldn’t believe it. We had just come off a summer where Cam was happy. His behavior had been steadily calming and improving with each week. Clearly, school was the issue. And, regardless, how could I exert more “discipline” on a child who was already hitting himself? How would a sticker chart help with the nightmares and insomnia? My son was not just a little anxious; he was in full melt-down, toxic stress mode. Stickers and discipline were not the solution.

HeadphonesThe school, for its part, said they would make Cam’s headphones more readily available (they used to make him ask for them). And, they would add a visual schedule. But, because they didn’t believe Cam had autism, they refused to consult with the district autism specialist or implement autism protocols to reduce sensory overload.

My husband and I walked out of the IEP meeting silently. Like Cam, we lowered our heads and quietly stared at the floor as we slinked out of the building. We were devastated. Our school district was supposed to be one of the best in the state. We had moved to our town for the school district. Still, once we got to the safety of our car, we realized we had a big decision to make. We could listen to the experts and stay with the status quo, hire an advocate and fight for a better IEP, or leave the school altogether.

I hit the autism forums with a vengeance. I asked for advice and support from everyone. All the autism parents agreed that the school was wrong and probably acting illegally for refusing to address Cam’s medically documented autism diagnosis. We got a ton of support, information, and legal advice. The autism forums are amazing. If you have a problem with the schools, reach out to the autism community; they will help you.

In the end we decided to take Cam out of school. The teachers didn’t understand Camden. Not even the best IEP in the world can make a teacher understand a complex kid like Cam or care about their success. And, maybe it wasn’t the teachers or the IEP, after all. Maybe it was school. Maybe it was the structure of school. Perhaps, it was too noisy, too crowded, too chaotic, too bright, and just too much for our little guy. Some kids with autism are not going to fit into that environment, EVER. Period. Case closed. Camden is probably one of those kids.

So, after just three weeks of school this past fall, three weeks of trauma, we took Cam out. It took him a few weeks to recover and for the nightmares to stop, but now he is happy. Once in a while, he will still ask if we intend to make him go back, and we reassure him that we’re not. He is now in private tutoring, occupational therapy, and other quiet activities. And, he is happy again.

But, you ask, what about socialization? “Socialization is so important at this age!” “He NEEDS to play with other kids.” I can see the comments already. . .

Well, that is the subject of another post . . .Hang on tight; this ride is just beginning!

~Lou