Society Isn’t Designed For Autistic People

I was at dinner with some friends over the holiday. We were doing the normal chat, talking about our lives, our Christmas plans, our husbands and our kids. One friend asked me how Oliver is doing. I said he’s doing great. She followed up with a question that surprised me a little. She asked, “So, is the therapy curing him?” This may seem like a simple question for most people. For me, it feels mean.

I choose not to be offended or insulted though. She, like most people, view autism as a disorder that needs curing. I responded that best way I could think of, especially because this particular friend is currently exploring the possibility that her son may be autistic as well. I told her that the therapy isn’t a cure for autism. He will always be autistic. It’s not a disorder/disease. It’s the way his brain operates. So, yes, he’s doing great. But I suppose I’ve always thought he’s doing great. I left it at that.

This conversation caused me to think a lot about my kids and how the therapy is impacting their lives. This line of thinking is a regular occurrence for me. Anyone who knows me well is aware of the fact that I can dwell on little choices I make about my kids for extended periods of time. I project 20 years forward and try to picture how the decisions I make today will change the trajectory of their lives. Of course, it’s a fruitless exercise.

Anyway, I was deep in thought about ABA therapy when someone reached out to me about it. She sent many articles about the permanent impacts of ABA. She pointed out some real concerns that happen to be concerns that I share. I read through everything she sent and prepared for my upcoming meeting with Oliver’s team. As it turned out, the director of Utah from the company that is providing our services was coming to my house that very day. I would have a chance to talk through my thoughts before I head into this inevitable black abyss of worry that I’m being a bad parent. Funny how the timing worked out that way.

When she arrived, I dove right into my concerns that she is very much familiar with at this point. I told her I’m worried about:

  • teaching him to hide his emotions rather than process them
  • working him too hard
  • him learning that there is only one right way to do things which isn’t his way
  • Max feeling like his needs are not as important as Oliver’s
  • learning blind compliance to authority figures
  • him feeling like the only way to be successful is to conform to an image that we design
  • ABA feeling abusive to him

She listened to me, as she does every time, with understanding and compassion in her eyes. We walked through all of his programs, like we always do, as I sorted through my thoughts about it all. We evaluated his hours and talked through his school schedule. She told me again that if change is needed that I can call her anytime and they will be put in place right away. Of course, I already knew that seeing as how I’ve called for changes many times. I walked away feeling grateful for her, for the team we have and especially for this woman that took the time to send me her thoughts. I’ve never felt more confident in the choices I’m making for my family. I’m sure a fleeting feeling, but at least it exists today.

The truth of the matter is Oliver doesn’t need to change anything about who he is to have a successful, happy life. Unfortunately, there’s another truth that has to be acknowledged. Society isn’t designed for autistic people although it is getting better. Schools have sensory activities worked into the curriculum, there are teachers that specialize in helping kids that learn differently, even Vivint Smart Home Arena (still the Delta Center to me) has a sensory room! These things help, but they aren’t enough.

School is set up for kids to come in with a certain level of vocabulary, basic skills for following directions, the ability to learn in a group setting and to understand what’s being asked of you. These are the exact skills that are developing much more slowly than what any public school can accommodate. That is where the ABA therapy comes in.

Basically, the strategy that I have insisted upon is building confidence in himself paired with understanding the society that we live in. It’s OK to feel sad/angry. You can cry, scream, punch a pillow, go to your room, say how you feel, walk away, ask for a treat, get a hug and countless other things, but it’s not OK to hurt yourself or others. The focus of the therapy is not about making the one correct choice and baiting him into making it. It’s about teaching him to generate his own solutions while steering him away from the ones that are detrimental to him and others.

  • It’s OK to explore a new environment, but it’s not OK to wander to where mom can’t see you.
  • It’s OK to be fearless, but it’s not OK to run into the street or jump into a pool alone.
  • It’s OK to be different and learning to stand up for yourself goes along with that.
  • You don’t have to change your interests to make friends, but you do have to be kind and listen to others.
  • You also don’t need to be friends with everyone, your real friends will accept you.
  • You don’t need to give up on your fascinations, but you do need to recognize/cope with situations that don’t accommodate them.
  • It’s OK to need help, but you need to learn to do things on your own.

Autism Hurts

As I write this down it makes me realize that these lessons aren’t reserved for people who are not neurotypical. Every child has to learn about how to function in society. Every person experiences positive and negative things on their journey to adulthood. I can’t prevent pain from touching my kids. I figure the best thing I can do is equip them with a strong moral compass, teach them the importance of setting boundaries and model strategies for dealing with pain.

The therapists help me do this by:

  • reading books to the kids
  • watching videos followed by asking questions
  • playing games that require turn taking
  • creating problem solving boards to help support emotional processing
  • making visual schedules to help the kids know what to expect
  • bringing sensory toys to help alleviate anxiety
  • making flashcards to help improve vocabulary
  • spending time with me to talk through any concerns that I have

The consultant meets with the teachers at the school to come up with plans to support his specific learning style. They provide a weighted blanket for him when he has to sit and listen. They keep a dinosaur card on the board at school to let Oliver know when it’s dinosaur time. The teachers now make time during the day for all the kids to pretend to be dinosaurs. The school speech therapist, private speech therapist and occupational therapist all use dinosaurs and Godzilla to help him along.

At the end of the day, one of the reasons the therapy has been so good for him is because the adults have decided to put him in charge of his own life. We don’t get to create an image for what a good kid looks like. He’s already a good kid. The team helps him learn how to function in the society we have today, not for the society that we ought to have. The society we have today doesn’t make room for people that are different very easily. We need to push the public school system, the courts and challenge societal norms to achieve the changes needed to make room for everyone. It will take years of persistence, awareness and organizing. In the meantime, therapy and other support is the answer for us.

I believe that sharing my life will help create a community that feels urgent about having a more empathetic and inclusive society. Not everyone will understand or agree with my methods. All I can do is keep the conversation going and keep doing the best I can.


This is Autism

I hear it all the time. When your kids get older you will look back on the toddler days and wish for the simplicity of the problems back then. A cup of warm milk can solve many of the problems a toddler experiences. A bumped head, a lost toy or just feeling tired. A hug from mom and a distraction are surefire ways to remedy most things at my house. Yesterday that changed.

We were having our routine ABA therapy session yesterday morning. Oliver is due for another assessment so his therapist was gushing over how much progress he has made in the last six months. It’s amazing!, she says. Look at his vocab, his skills at requesting things he needs, his ability to calm himself in stressful situations. It’s awesome! Of course, I was thrilled for multiple reasons. Obviously him making progress is good for him and our family. I have selfish reasons too. I’ve been feeling really done with all the therapy. 25 hours a week is getting really old. I’ve been daydreaming about the day that we can just have our freedom to do whatever we want without so many scheduling restraints. I made a joke, ‘That means there’s an end in sight, right?’ Wink, wink, nudge nudge. Yes we’re closer, but he’s still scoring some zeros in the social skills section. She showed me her computer and scrolled down the column. I thought, wow, that is a lot of zeros, but that’s ok. Social skills take time and school will surely help with that. We moved on with our day and I was feeling great. Oliver was off to school and Max was napping for once. I leisurely watched the news while I played games on my phone. I could get used to this! Oliver came home and we began with the evening therapy session. The kids were playing outside with a little neighbor girl. I was carving a pumpkin on the porch. It was a picture perfect evening.

It got a bit cold so we migrated into the house. The kids were running around playing chase, screaming and having a grand old time. Oliver decided to grab his megalodon shark and chase the neighbor girl with it. She screamed and told him that the shark was too scary for her. She wanted to go upstairs and play cats. Now, normally Oliver would be totally fine. He would either stay downstairs to play sharks or he would follow her upstairs to play cats. This time he did something I wasn’t prepared for. He dropped the shark, hung his head and went into my bedroom. How odd, I thought. I waited for minute to see if he would come out. He didn’t. I walked in to find him sitting on my bed facing the wall. He wasn’t sobbing, slow tears were running down his face. ‘Wow, Oliver you look sad. Can you tell me what’s going on?’ I’m used to prompting him with emotions because he’s not super good at expressing himself. He responded with the most clearly articulated sentence I have ever heard him use. ‘I’m upset because she doesn’t want to play with me. She doesn’t want to be my friend.’ I didn’t think it was possible to have simultaneous emotions on opposite ends of the spectrum until that moment. On one hand I was happy to see him express himself so plainly. I was happy to see that his brain is developing and becoming more complicated, more on par with his peers. At the same time I was crushed to see his heart broken. I haven’t ever seen him get his feelings hurt like that. I knew it would be hard to watch your kids go through painful situations, but not this hard. I tried desperately to explain to him that she does want to be your friend and that she was just afraid of the shark. He either didn’t understand or he didn’t believe me. I couldn’t tell which one. Max and the girl came to talk to him, to invite him to play, but he couldn’t recover. She went home and I held him on my lap, rocking in the chair, explaining that it’s ok to be sad while tears just streamed down his face. It was heart wrenching for me.

This is autism. It’s the constant misinterpretation of social cues. I didn’t know his inability could be so obvious at such a young age. The difference between Max and Oliver in social situations is so stark it’s shocking sometimes. It was bittersweet to watch Max at just 3 years old navigate the situation with such ease. He saw Oliver get upset and began telling the friend that they need to find his blanket. They gathered up his blanket, his tablet and his Godzilla. Max brought it to him and asked Oliver if he was feeling happier. Oliver said no so Max gave him a hug. I didn’t teach him any of this. He just watches and learns. Max plays so effortlessly with friends older or younger. People have a really easy time connecting with him because he’s funny and smart. He understands slang and nuanced conversation. I watch while friends treat Max like a peer and Oliver like a baby. It just breaks my heart in such complicated ways. I don’t feel prepared for this phase. I’m good at warming up milk, making funny faces, playing Mario games and acting like Godzilla. I have no idea how to help soothe heartbreak, build confidence and help deal with insecurity. How am I going to get through this? This is just the beginning of many situations that will come up for the foreseeable future. I know I can’t keep pain from my kids. I just hope I’m steady enough to help them when life will inevitably happen to them.

Recipe for Disaster

We had big plans. We were heading up to Eaglewood Golf Course for the annual firework show. I was feeling super confident because my autistic son, Oliver, has been killing it lately! I’ve been getting really comfortable going to the grocery store, the pool, even the splash pad. The splash pad! I thought that would never happen.

My younger son, Max, is also crushing it which essentially has lulled me into false sense of normalcy. My husband and I were looking forward to socializing with our friends that we haven’t seen in weeks. We were talking about how fun it’s gonna be to sit on a blanket, eat snacks and not be totally preoccupied with all the issues that have plagued us for years.

We packed our bag, got the boys in their festive shirts and headed out. We stopped to get some snacks and some glow-in-the-dark stuff. The boys fell asleep in the car on the way up to the golf course so Mark and I had plenty time to chat. We talked about his work, the kids and issues of the day. I was happy, like really happy. I was feeling like all the sacrifices we had made over the past couple years was about to pay off. I was going to see how much progress we’ve made. This was the recipe for disaster.

After letting the kids sleep for about 30 minutes, we woke them and headed to the meeting spot on the course. In hindsight, I should have seen the red flags. Oliver couldn’t quite wake himself up. I was carrying him on my shoulders and he couldn’t keep his balance. He started speaking gibberish. Normally I would have logged these two things in the red flag column and started mentally preparing for a meltdown, but I didn’t. We pressed forward.

Soon bounce houses came into view and Oliver immediately fixated on them. ‘Can I play, can I play?’ ‘First we need to go find our friends and then we can play.’ ‘No! I need to play! See mom I need to play.’ I should have added a mark in the red flag column, but I didn’t.

We walked past the bounce houses and he continued to become more agitated. I figured all kids get agitated when they don’t get what they want immediately, we’re totally fine! We got our blanket set up. I said hi to a few friends and headed back to the bounce houses. If you can imagine, this area was total chaos. Oliver was pleading with me to let go of his hand while I searched for the place to buy tickets. I found the table finally and it was swarming with kids. I got in what I deduced was a line and that’s when it hit me.

This was not going to go well. Oliver started screaming, ‘I want to play, no mom, over there!’ I tried to explain we have to buy tickets. It was too late. He was already gone. I looked down and my sweet little Max was doing his best to calm Oliver. ‘Don’t worry Ahwa! It’s not sad. It’s fun!’ We made it to the front of the line and the girl at the table started explaining the rules which she didn’t know was completely futile.

Ok, onto the toys! We made it! Not quite… there were huge lines to get into the toys too. Oliver started crying while Max waited patiently. Once they got inside it only got worse. The noise, the chaos, the obstacles to climb, the rowdiness. It was all too much for him. He collapsed to the ground in full blown meltdown. What was different though is that he looked so heartbroken.

This was the first time I had seen him realize that he wanted to do what the other kids were doing and he couldn’t. And it crushed him. He kept trying, failing and going deeper into emotional turmoil. I didn’t know what to do. I tried helping him with the obstacles, I tried coaxing him out, I tried picking him up to carry him out.

Nothing was going to stop this emotional freight train. I called Mark for help and he arrived almost immediately, thank goodness. I asked him to care for Max while I tried to calm Oliver. I carried a sobbing, defeated little boy past so many scenes of celebration and delight toward the blanket we had set up earlier. Pangs of sadness and jealousy rose in my chest as I watched happy families hanging out. I sat down with him, but I already knew the only solution was to go home. I packed up our things and texted Mark that we have to go right now.

The minute Mark saw us he picked up Oliver and handed over Max. I told Max we’ve got to go home. He pushed back saying that we didn’t see the fireworks yet. I wasn’t anticipating this either. Max is now old enough to understand and feel disappointment about missing out. A wave of mom guilt overpowered me and I told him I will make sure he sees fireworks tonight. How do I balance his needs and Oliver’s? How do I prove to him that he matters as much as Oliver when our actions so often prove otherwise?

As I slid into the driver’s seat, I felt the all too familiar lump in my throat. Tears were coming. I hate crying in front of anybody, including my husband and kids. It was inevitable. It was my fault that I didn’t come mentally prepared for this to happen. I put my kids in a situation that was sure to go south and I didn’t have the foresight to see it. My happiness was replaced with crushing disappointment and jealousy. I tricked myself into thinking that we were ready for this. Ugh.. what a mistake. Mark took Oliver home and I took Max to see fireworks at a friends house.

Once the night was over I sat in bed dwelling on it. Hours passed. 1am, 2am, 3am.. I watched the time tick away. 4am rolled around and I decided I might try reading myself to sleep. I sat in the ‘green chair’ and read for 2.5 hours. No sleep. My brother started texting me around 7. Still no sleep. My family woke and I laid back down at 9am and slept till 10:30 am. Now it’s the 4th of July with another activity planned for tonight. If there’s one thing I know it’s that we’ve got to get back on the horse. We’ll try again, but this time I’ll be ready.

Autism Hurts

Here I am. The same cycle again. A period of hope followed by a crushing blow that ends in tears. Any special needs mom will know what I’m talking about. My autistic son has made such strides in the past couple months. We are actually talking about when to graduate him from ABA therapy. I’ve been so happy and optimistic. I’ve been able to focus on other issues that I care about. I’ve been able to go to the store, be a little more spontaneous (albeit slightly) and spend less time planning out my life so meticulously. It’s been wonderful! So wonderful that I start letting my mind dream about a day when all this autism stuff might be in the past. A distant memory that someday might be funny to tell my grandkids. Tell them they’re dad used to be really quirky and hilarious. Then today happened. Something that seems insignificant to many other people, I’m sure.

I surprised my son with a Jurassic World shirt this morning. He was so thrilled because he is obsessed with dinosaurs right now. He wanted to put it on immediately! He wanted to go show his dad and his brother. When I told him it’s time to go to the daycare (which he does every Friday morning), he asked me to tell the teachers that he has a surprise. Now, this request is very significant for him. One of the things we are working on with him is being able to understand upcoming events as well as recall past events. So, the fact that he was able to understand where he was going, who was going to be there and having a desire to surprise them with a new shirt was a huge breakthrough for him. We got to the daycare, he leapt out of his chair, opened the door by himself and headed inside. I went around to the other side of the car to help my younger son out feeling thrilled about his desire for independence, which is also something we are working on. I walked in feeling like this day was going great and that’s when it changed.

I saw him standing in front of the desk showing his shirt to the woman working. He was politely saying, ‘excuse me, excuse me.’ (This is also a skill he has been working on.) She showed no interest and he began to look disappointed. I told him told, ‘hey don’t worry. I’m sure the other teachers would love to see your shirt.’ I got them checked in and the woman opened the door to let them in. My son got into a raptor position to go show off his shirt and the woman stopped him. She said, ‘you can’t act like a dinosaur in here.’ He then straightened his posture and saw a teacher he likes. He crouched back down as a dinosaur to show her his shirt and the woman said, ‘hey, that’s not acting like a boy. You can’t act like a dinosaur here.’

He looked back at me and I knelt with him and asked him if he could leave his dinosaurs at home today. He said yes and walked in. I looked at the woman and she said that he always acts like a dinosaur, walks around and scares the other kids. I could feel my ears getting hot, my throat getting a lump. She’s right. He does act like a dinosaur when he’s happy. He does scare other kids. What she doesn’t know is that he works 20 hours a week trying to learn more appropriate social skills. Acting like a dinosaur is his way of interacting with his peers. I understand that it isn’t ideal. I told her, ‘I know it’s a problem and he’s working on it.’ I think she could tell I was upset because she added it’s nice to know what he likes though. I stared at my hands while I was signing the log. I was doing my best to keep from crying.

I got into the car and burst into tears. I feel so hurt. I saw him use all the skills that he’s been learning. I saw him thirsting for interaction. To see him shut down like that was so hard. Why didn’t I pick him up and take him right home? If there’s one thing I’ve learned about having an autistic child it’s the fact that the world isn’t gonna change for him. These situations will actually help him learn what is socially acceptable. It doesn’t change the fact that it is incredibly painful to see him misunderstood. The only thing I can do is to make sure he knows that I love everything about him. He’s the best little dinosaur around. I wish other people could see that too.