Like every other community in the world, autism is filled with buzzwords that nearly everyone uses.
And like every other human in the world, some of these buzzwords annoy the shit out of me.
At the top of the list is the word choice, as it is used by Tosh's teachers and therapists. As in, "today Tosh made some poor choices and acted aggressively toward staff."
Now, I'm all about life being a series of choices. In fact, I am absolutely not down with the victim attitude that has taken over America. Everyone is a victim these days. It doesn't take long watching the news or scanning your Facebook feed to wonder if life has become one big contest to see who is the most oppressed.
In the long game of life, happiness and success are indeed a choice.
But if you're a kid with autism, and have a medical disability that prevents you from stopping and deciding how to react when you become agitated or overstimulated, your response is beyond your control.
I receive a lot of comments about what a happy boy Tosh is. And it's true, most of the time he truly is a little ray of sunshine.
My little Aries comes by his good nature naturally, but we've also done a lot of work to build his self image.
Because of Tosh's autism, he spends a lot of time in corrective therapy sessions. Private and school behavioral therapy, private and school speech therapy and OT in school adds up to several hours a day in which he's being corrected.
Just imagine if you were told every day, almost all day long, that everything about you is wrong. And then you go home and hear it from your mom and dad.
I've been working on a course to help parents teach their autistic kids how to go out in public successfully, and researched one of the main reasons families stay home: eloping.
If you don't know what eloping is as it pertains to autism, consider yourself very lucky. Like the traditional definition of eloping, in which people run away to get married, eloping in autism means a child or adult runs away from school, home or elsewhere without a caregiver. It happens every damn day and it's rarely the fault of teachers, aides, parents or caregivers being careless or inattentive. Oftentimes, the child is very clever and sneaky about it, and disappear in a matter of seconds.
Earlier this month, I attended the Talking About Curing Autism (TACA) National Conference in Costa Mesa, California. There were many highlights, but for me, meeting Temple Grandin and hearing her speak was a dream come true. She is just as amazing as you'd think.
I learned so much from her speech and have already put some of her suggestions into action. Here are five of my favorites.
1. Always assume competence.
It was interesting that I had just written about this right before attending the conference. Just because people with autism can't communicate that they know or understand something, doesn't mean that they don't. Instead of assuming they can't, always assume that they can. Assuming they don't know things or can't do things makes them aggressive, and rightly so. Who wouldn't be in a pissy mood if everyone treated you like an idiot all day long?
Tosh is always surprising me with what he can do. Just one month ago he showed me he knew how to drive. I had no idea he had the hand-eye coordination and the ability to handle all of the stimulation. Our kids will surprise us with what they know and what they can do if we let them.
Tosh has never taken an IQ test because they are designed to measure the intelligence of neurotypicals. What's the point? He already fails all other standardized tests because no effort is made to accommodate his inability to communicate like an NT.
I read recently that apraxia is more than just an inability to speak. It also prevents someone from correctly answering questions using any form of communication.
Wow, what an eye opener. That means because of Tosh's apraxia, there is no accurate way to measure his intelligence.
I'm in the process of setting up classroom observations to determine if the severe class is the correct placement for him and if not, what behaviors he would need to improve to move to the mild-mod class. I'm bringing along his ABA supervisor to see how they could support this transition. We're lucky that our district allows this. Many don't.
In fact, Tosh's teacher asked yesterday if I’d like to observe him mainstreaming as well. "Yes, of course," I answered. What a great idea and generous offer!
I've posted quite a bit on social media about how Tosh uses his iPad for communication, and even published this blog post on Proloquo2Go hacks we've learned.
But what I haven't written about is how getting an iPad for Tosh was one of the best decisions I've ever made. I couldn't care less about people who have judged me regarding his screen time.
Around 18 months, Tosh began to regress. By the time he was two, he was really struggling. He couldn't focus on anything for more than a second. He didn't play with many toys, couldn't sit still to read a book for more than a few pages and he didn't show any sign that he could learn.
Then, I got an iPad mini to use while on business trips. I downloaded a couple of apps for Tosh and it quickly became his iPad.
I was stunned and how easily he learned apps. At just two years old he could master them within a few hours.
It was the first time he was able to show me he was smart.
Some parents have asked me if I think they should get their autistic child an iPad. The answer is always yes.
Yes because it might be a platform they can use to communicate their intelligence when other platforms like books or toys fail. Yes because it can function as a sensory regulator when in public, so they can go out into the world like everyone else. Yes because it can be used to communicate.
And yes, because it can buy you a few minutes of peace. Anybody who judges you for that can step in and babysit your autistic child for a few hours. Then we'll see what they have to say.
The next question I get from parents is which apps should they download. All kids are different, but here are the ones Tosh likes best.
TinyHands were the very first apps we downloaded for Tosh and I was stunned at how quickly he learned them. We bought several of them individually, including all of the ones in this bundle. His favorite "Tower 1" game is only available on iPhone now, but it's in this bundle. With these apps he learned how to use a touchscreen and basic concepts like stacking by size, sorting and matching. The bonus was that autistic kiddos are usually pretty good at sorting and stacking, so these apps also built his self-confidence.
Tosh has never met an alphabet game or toy he didn't like, so this one was a slam dunk. Plus he had the Fisher-Price Puppy so this was a nice bridge between an app and a real toy.
This app can be pretty stimulating and might be too much for your child. Sometimes it overstimulated Tosh but he really loved it (as you can see by the open button it's still on his device and mine). Plus, the driving game taught him great hand-eye coordination.
You can't go wrong with Elmo. Tosh loved this app and a similar one, Elmo Loves ABCs. He still has that one on his iPad and plays with it sometimes. The educational benefits are obvious - learning to count, identify numbers and trace to build beginning writing skills.
This app is great for learning about weather and appropriate clothes and activities for each weather type. But Tosh loves it because it's so silly. Things blow away when it's really windy and the characters shiver or sweat if they're wearing the wrong clothing. Having grown up in Kansas, I giggle at the tornado siren and how the characters go underground until the tornado has passed.
Tosh still loves this app and plays with it several times a week. It really is adorable, using Claymation to teach the alphabet. And the animal they use for Y is Yeti, which is pretty cool.
Sago Mini apps are fun and adorable and Tosh still plays with them all frequently. Most of them require creativity and decision making to build something. This time of year, try the Monsters app for Halloween fun that isn't scary.
Sigh. My baby is growing up and now he's playing with a full-on video game. Smashy City is exactly what it sounds like - giant characters smashing urban landscapes while being chased and shot at by police and the military. Awesome. At least it is teaching him strategy because the larger the building, the more points and power the smasher earns. He still hasn't mastered this one, but I love that it's an age appropriate game. Proof he's developing along with his neurotypical peers!
I think Tosh might be a shaman.
No, seriously. Hear me out. Your kid might be one, too.
Even if you aren't into that kind of thing, you’ll look at their autism “symptoms” a little differently.
While flying home from our Labor Day vacay, I read a pretty convincing article in Autism Digest written by a shaman who is also autistic. Gonzalo Benard, a Tibetan Bonpo Shaman also known by his shaman name Gon.Sal, was nonverbal until age seven and even as an adult, rarely speaks.
If you’re unfamiliar with shamans, they were prevalent in many ancient tribal cultures around the world, including the native cultures of North America. They’re kind of a mix between a doctor and a priest, using both spiritual and medicinal healing. The internet and social media, along with a renewed interest in metaphysical phenomena and natural health, have raised the profiles of modern day shamans.
Some, like Shaman Durek (who I follow on Instagram and who did a short, remote reading on Tosh) are receiving mainstream media coverage.
Gon.Sal wrote that in many ancient cultures, children with autism were considered sacred and many became shamans. He explained that many of autism’s symptoms, which are considered problematic issues that must be addressed, are qualities that shamans, monks and other holy leaders use to practice spiritual rituals and heal people.
Take, for example, autism’s nonverbal symptom. Think of all the world religions that require their holy leaders to take vows of silence to strengthen their ability to communicate with their god. When you find your silence, you find your answers, he said. He added that speaking creates vibrations that drain energy from the speaker, and for autistic people, who have more sensitive nervous systems, that energy is instead needed to recharge their bodies in today’s over stimulating world.
Also consider how many autistic people hum and rock back and forth. Now think about all the religions that use rocking, humming and chanting to evoke a spiritual connection. Almost all of them, right? Gon.Sal said rocking, humming and even stimming are tools holy leaders use to calm, focus and connect to spirit.
Autistic people are also highly empathic. I know Tosh certainly is. He’s extremely sensitive to the moods and emotions of people around him, and he becomes concerned or upset if anyone is sad, hurt or angry. He becomes distressed if someone exhibits road rage while he’s in the car, and he hates political debate.
And he doesn't just exhibit empathy. Tosh wants to make it all better. He's a hugger (when he initiates it). He hugs people he loves and those who are upset. He also rubs, kisses and blows on any and all ouchies without prompting.
This ability to feel others in a deeper way is a gift shamans and other holy leaders possess. It provides a better way to heal and mindfully spread peace.
Gon.Sal also explained that this empathy also prevents autistic people from understanding today’s social structure, which is based on emotions, not empathy or even logic. That’s why our kids don’t understand emotional concepts like jealousy, greed, envy or justice.
For example, to someone with autism (and, I suspect, many parents reading this blog), why bother with jealousy? If not having something affects you so much, why not focus on improving yourself so you can have or feel the same? I must admit, that sure resonates with me. In fact, it's the underlying philosophy of Autism Oasis.
Our modern society is structured by neurotypical people who impose social behaviors connected to their emotions, rather than the pursuit of a higher consciousness. Neurotypical people are driven by ego. Autistic people are driven by spiritual alignment.
Perhaps the rate of autism is increasing because the world needs to change. After all, our world’s problems – war, poverty, climate change and the demise of our natural system – is all the result of ego-driven policies that use emotional manipulation to convince the masses to support destructive agendas that aren't in their best interests.
Perhaps the neurotypical population needs to start listening to autistic people, rather than change them. Perhaps our autistic children are here to open our eyes to our ego-driven follies, and to ultimately heal the world?
It’s pretty heady stuff, isn’t it? Very mystic and supernatural; and yet, there’s a lot of logical reasoning to support it.
What do you think? Might your child be a shaman? Might they be inter-dimensional protesters and healers, sent here to save humanity from ourselves? Please share your thoughts.
School starts two weeks from today, and both Tosh and I are really looking forward to it.
However, for many parents of autistic children, a new school year produces feelings of fear, dread and guilt.
I used to be one of those parents. I feared Tosh wasn’t being taught the academic knowledge and skills he will need to become the best possible version of himself. I dreaded the new negative behaviors he would pick up from other students. And I felt guilty that I wasn’t doing more to provide him with a better education.
In Spring of 2017, I did something about it. Fed up with what a lack of academic progress in Tosh’s neighborhood public school, I enrolled him in a charter school that didn’t have facilities to support small classroom special ed. That meant he would be 100% mainstreamed.
The exposure to neurotypical kids provided Tosh with invaluable positive behavior modeling. After just the first week, he was a different boy. The most obvious improvement was increased self-sufficiency. Suddenly, he wanted to do everything by himself. I could also see he was trying harder to control the volume of his voice and socialize appropriately.
Ultimately, a 100% mainstream environment was too much. After peaking in September, his behavior became more aggressive and problematic, and by the end of the school year, it was obvious we had to make a change.
But I didn’t feel discouraged. I felt confident.
We had learned that Tosh couldn’t handle a mainstream environment all day long, but exposure to mainstream students supported his educational goals. Thanks to the charter school’s IEP, written before we transferred back to public school, that benefit was in writing, supported by quantifiable reporting.
We had also learned that we have options, and we aren’t afraid to explore them. We returned to our public school system, but we could have continued at the charter school with a combination of home study and on-campus education. We also could have put our application in with a private school that specializes in autism. Those options are still there, if we change our mind again.
When we returned to our local school district, I exercised my right to an intradistrict transfer and placed him in a different school. It has been a completely different – read better – experience.
The administration at his new school is more supportive of special education and doesn’t micromanage it. Before, at our IEP meetings, every single request I made was shut down by the principal, who declared, “sorry, we don’t have the resources for that.” He didn’t even have resources for commonly accepted accommodations required by law. “So sue me,” seemed to be his strategy.
At our new school, the principal didn’t even attend Tosh’s IEP meeting and my requests were met with a team brainstorm of ways to make them happen. I didn’t get everything I asked for exactly the way I wanted, but we truly share the goal of educating Tosh, and that’s all that matters.
To be honest, much of the improvement came from within me. Armed with more knowledge about the special education process, the confidence to ask for what Tosh needs and a better understanding of my role in his success, I built a better foundation.
Here are my tips as you look forward to another school year.
If you’re concerned about how much time your child spends on their iPad, you’re probably not an autism parent. For our kids, the iPad is more than just a toy.
In fact, for nonverbal kids, it can be their only way to effectively communicate wants, needs and emotion. Tosh carries his everywhere.
Proloquo2Go is the most popular assistive communications app for the iPad. Used by more than 125,000 people, it's a digital PECS system that promotes language development and communication skills.
Whether you’re a Proloquo pro, or you and your child are just starting your AAC journey, here are three hacks you need to know.
A little over a month ago, Tosh deleted Proloquo.
And it sucked.
I was able to reload the app from my iTunes account but lost almost a year’s worth off customized programming. All the photos of friends, favorite foods, toys, places he likes to go … all gone. It was devastating!
I’ve since learned that I can set up restrictions in his iPad’s settings that will remove that little “X” in the corner of app icons when you hold them until they wiggle. And even better, when you enable restrictions you set a passcode, so your little smarty pants won’t figure out how to override it, along with the ability to install new apps and make in-app purchases.
Here’s how you set it up.
1. Open settings
2. Select "general"
3. Select "restrictions"
4. Enable restrictions and select a passcode
5. Deselect “deleting apps” and other app options, if you wish
Your speech therapists or ABA therapist may have already showed you this trick, but sometimes even they don’t know about it. Guided access prevents your child from exiting Proloquo and playing a game or watching YouTube instead. It works with any app and you can even set a timer that automatically close an app, so you can limit YouTube or game screen time.
Here’s how you set it up.
1. Open settings
2. Select general
3. Select accessibility
4. Select guided access (you’ll have to scroll way down to find it)
5. Turn it on and set your passcode
To use guided access, triple click on the control button while you’re in Proloquo. That will enable guided access so your child can’t exit the app. To disable it, triple click again. You’ll be prompted to enter your password, and then you will be given the option to end guided access or continue it.
Proloquo edit functions
Tosh loves to mess with the settings on his iPad, and before he deleted the entire Proloquo app, he had deleted a number of customized buttons. His speech therapist showed me how to turn the edit function on and off as needed for customization work only.
Here’s how you set it up.
3. Select "restrictions"
4. Deselect "edit mode"
5. Close Proloquo and open settings
6. Scroll down to find Proloquo2Go in the apps list and select it
7. Deselect "show options"
Now, when you open Proloquo, not only won’t the edit pencil icon show, the little settings wheel won’t be showing either, so your technologically savvy kiddo can’t as easily figure out how to enable editing.
What is your favorite Proloquo2Go or iPad hack? Please comment below and share with the rest of the Autism Oasis tribe!
Children with autism struggle to behave according to society’s rules. They spend countless hours in therapy in an attempt to learn neurotypical behaviors so they can successfully socialize and participate in activities most people take for granted, like attending school or eating out at a restaurant.
It’s easy, as a parent, to get caught up in the need to help your child conform. After all, the ability to follow rules determine one’s success in life. We all want our children to succeed.
These days, we celebrate individualism on social media and pay lip service to what makes people different. We’ve all seen the meme of the little ballerina hanging upside down on the barre while the other girls obediently follow the teacher’s pose.
Be like this little rebel, the meme says, and everyone on social media enthusiastically agrees.
Except autism parents. We know that’s not the case in real life.
Heather Anderson is a blissfully happy autism mom and lover of life in Southern California who is on a mission to help autism parents rediscover their happy place.
Please join me on this beautiful autism journey. The Autism Oasis is a fun, supportive and educational community where your personal development is just as important as your children's. You are more than just a caregiver!