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

Some Success: Homeschooling and Socializing

attachment_1417753768018_photo~2We have been settling into homeschooling. Cam seems to have recovered from his preschool experience. He still won’t let us drive by his old school, but he stopped asking if we were going to make him go back. He has been much happier. His anxiety and aggression have decreased. He is more relaxed and sleeping better. He has become increasingly loving and affectionate; Cam now tells us he loves us several times a day. He gives us hugs and “pat-pats” on our back. Our family feels good again, and my husband and I feel good about our decision to keep Cam home.Still, homeschooling was not my first choice. Heck, it wasn’t even my second choice. My first thought was Cam would go to public school with accommodations. Then, I thought, well maybe a small private school would be better. Homeschooling was not what I wanted. But, I like seeing Cam happy, growing, and learning. I like hearing Cam and his daddy giggle while they play Nerf guns and wrestle like they are doing now in the basement. I like being able to sleep again. And, it is not as isolating as I thought it would be.

IMG_0233We keep busy. At this point, I haven’t been teaching Cam at home. He sees a tutor twice a week, and I do enrichment and play academic games with him. He goes to occupational therapy once a week. He hangs out with his Grandma for two afternoons. We go to the library, shopping if he is up to it (sometimes it is just too stimulating). We do a play-date with Cam’s tutor’s son, V, who is also four. While Cam plays with V, his tutor steps in now and then to coach him on social skills like sharing, taking turns, or initiating a game. Cam also meets with his cousin once or twice a week to play, as well.

Interestingly, Cam is probably more social now than he was in school. At school, he stood by himself at recess. In the classroom, he was pretty shut down. With his cousin and friend, V, Cam is engaged and playing. And, at home, he is more social than ever. Once Cam’s anxiety subsided, he became softer and sweeter. He is more open with everyone. He told the cashier at Costco today that he loved her. It was hilarious! Then after we got home, he asked if he could marry her and have her move in with us!

I personally think that socializing at home with your family is the most important socializing. I read about Aspie kids who are so stressed out at school, they can barely engage with their family when they get home. And, then the parents say that the reason their child is in school is so he or she can learn social skills. But, nobody can learn and connect if they are stressed, anxious, and overwhelmed. That being said, I know a lot of kids with autism do function well in school. So, I don’t want to be one of those people who says everyone must homeschool. You have to find what works for your child. And, I hope that one day Cam may be able to go back to school. There is a small Montessori school near us that might be a good fit. For now, though, we are happy that he is happy.

~Lou

Loving Lampposts

loving lamppostsLast night, I watched “Loving Lampposts” for the first time. It is a documentary about autism created by Todd Drezner. The film begins with an introduction to Drezner’s son, who has autism, but then goes on to look at autism from a broad perspective.

I’ll try to write more about the movie at another time. Right now, I just want to say this is one of the best films I’ve seen about autism. It makes you think about how diverse autism is and how narrowly it is portrayed in popular culture. Drezner made me question my own assumptions and helped me understand the importance of the neurodiversity movement.

You can see the movie for free at snagfilms.com. There are a couple short commercials, but they are not too distracting. Just put “loving lampposts” into the search bar at the top of the site.  ~Lou

Moods and Triggers

I was going to write about socialization this evening, but after the day my husband and I had with our son, I feel the need to talk about moods and triggers.

Jeff and I try really hard to figure out what our son’s triggers are and to work around them. Cam is only four years old, and our primary goal is to make sure he feels safe. For example, Cam cannot cope well with the sensory stimulation of grocery stores, so we don’t take him with us to grocery shop. I don’t believe in making him “get used to” his sensory challenges because, frankly, that hasn’t worked. If he could get accustomed to his sensory triggers, he wouldn’t have autism. He would just be a sensitive kid who needed extra time to adjust. The fact is Cam does have autism, so we do as many “workarounds” as we can to help him feel safe and happy.

That being said, there are days when we don’t understand what is going on with our son, and we can’t figure out how to help him. Some days, Cam is hyper, volatile, and destructive, and we can’t trace it back to a trigger. On those occasions, we know Cam can’t control his impulses and actions, so we rarely discipline him; we just wait it out.

bazoongitrampolineToday, Cam was jumping on his trampoline and spitting for no reason (that I was aware of). I maintained my composure, made calm corrections, and let it go. But, then, he began jumping onto the sofa from the trampoline, nearly hitting the dog. After multiple warnings, I had to give Cam a time-out for five minutes in his room. When it comes to safety issues, I have to be firm. I pick my battles as much as I can. Sadly, on days like today, there is just one escalating battle after another.

I often go with Cam to time-outs to help him settle down. On other days, if he is on a roll, I use the five minutes to breathe and settle down myself. My husband and I remind ourselves repeatedly that Cam’s behavior is not personal and not about us, but we get frustrated and angry; we’re human. I know that autism brings gifts, but I can’t deny that it can also bring hyperactivity and aggression. At times, I feel like I’m waiting out a torrent of negative energy that won’t stop. Autism, at least at age four, is complex and challenging.

Luckily, most days aren’t like today. Cam’s bad moods usually do have a trigger. The more we understand those sensory or social triggers, and work around them, the happier he is. Even today, I would guess that Cam’s struggles were caused by poor sleep. We tried melatonin as a sleep aid, and it seems to have caused nightmares and turbulent sleep. At least, I think that’s what happened; I can’t know for sure.

My husband and I will keep looking for clues. It has been paying off. Cam is much happier, secure, and loving this year than last. We got his diagnosis in February and have had months to adjust our lifestyle. We have also gotten a great deal more patient. We find the more we let small behavioral infractions go and respond with patience and love to Cam’s aggression, the fewer issues we have. The more sensory triggers we avoid, the more social and sweet he becomes. Unfortunately, there are still very hard, “hold my head in my hands” kinds of days, but we are seeing less of them.

~Lou

Related: Parents Don’t Cause Autism, but They Can Make A Difference

Mistakes I Didn’t Know I was Making

I think all parents probably do this. After we got Cam’s diagnosis, and I started to learn about autism, I realized I had done things that hurt Cam without intending to. Here are some examples.

1) The Move  -When Cam was two years old, we moved. Cam was a wreck. It took him two months to calm down. The change was overwhelming.

penny2) Dog #3  -A few months after we moved, I thought a puppy might cheer up the whole family. The two dogs we already had didn’t agree. Chaos ensued. Cam loved the puppy but hated the noise.

3) McDonald’s Playland  -What a fun place to bring your child! Oops. This one took me a long time to figure out. Cam loved Playland, but only when it was empty or just a couple other kids were playing. He asked to go all the time, but half the time (i.e. when it was crowded) he had meltdowns. After the autism diagnosis, I got it.

4) Therapists #1 and #2  -Our first therapist had more bad ideas than good. The second was better, but still not great. Neither one realized Cam was autistic.

5) Target  -I love Target. I can get everything I need for the house and some new pajamas, too! Cam hates the place. After the diagnosis, I understood; it was the crowds, the noise, the lights, the over-stimulation. Strangely, though, he doesn’t seem to mind Walmart.

6) Brunch  -Any Saturday morning I could, I would wrangle up my husband and son and drag them to the pancake house. I was determined to make it a family tradition. Never mind the clanking dishes, crowded tables, and crying babies, we were going to have a nice time. Except we didn’t. Finally, my husband laid down the law: no more breakfast restaurants. Now Cam and Daddy make waffles at home.

7) The Holidays -I probably don’t need to explain this one, –the crowds, the tension, the loud gatherings–. Now, we keep it low key.

There are a lot more things I could list, but I don’t want to beat myself up too badly. Preschool, as you know if you’ve read the other posts, was a complete and utter disaster. But, as moms and dads we do the best we can. Autism is baffling, especially before you know your child has it. Even after you learn the diagnosis, it is mysterious. All we can do is keep learning and trying.

~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