Autism & Acceptance as Explained by an Autistic 10-year-old

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My 10-year-old son decided to create a short video describing his experience as an autistic person. After all, who better to explain autism than someone who is actually autistic? The video is a simple, honest, and even funny description that is less than two minutes and was created using the program Scratch. Yes, he did all the writing, drawing, and coding by himself.

(audio transcript at the bottom of the post)

Alex loves to draw, as he stated in the video. For your reading amusement, here is a comic that was included in the video:

My comic

I am incredibly proud of my son, not only for his creativity but also for his bravery and willingness to share his story. In the video he talks about his strengths and is also honest about some of the struggles that he has experienced. He even explains a bit about sensory issues (as seen above) and stimming. His insights at the end about “the secret to a good life” brought me to tears.

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Autism, ADD, & Hyperfocus

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“Hyperfocus” is the ability to zero in on an activity with ultra-intense concentration, often for hours at a time. Neurodivergent individuals often experience this, for example people with autism or ADD. It is a common misconception that people with ADD are simply unfocused. During a period of hyperfocus the world can fade away and individuals may experience greater concentration, clarity, and productivity on their task. Autistic individuals have described similar experiences, especially when the task is related to one of their areas of expertise. I can’t speak to what it is like for everyone, but I can at least describe how hyperfocus manifests for my son and me.

My son is *autistic and vacillates between low-focus and hyperfocus, and I share all this with his permission. He has a hard time concentrating if there are any distractions (like noises, smells, or something else he finds interesting going on around him), if he is tired or unwell, or sometimes simply if he isn’t interested in the task at hand. Then there are other times that he can zone in and gets so lost in what he is doing that he won’t even hear someone if they call his name. When he was a toddler the way I confirmed my suspicions about his unique neurology was by sneaking up behind him and banging a pot while he played. He didn’t even flinch, didn’t even process the sound. This tendency towards hyperfocus and tuning out auditory stimuli can both help him in school and present challenges. It helps him because he can work quickly, efficiently, and often with a greater depth of creativity. Problems occur when he is so focused that he doesn’t notice what is going on in the classroom around him and misses instructions. His teachers are aware of this, however, and try to accommodate accordingly.

When my son was about eight years old he told me that often after he came out of a period of intense concentration at school the world “didn’t feel real”. He said he would have to get up and move around so he could feel like himself again and feel right in his own body. It seems that he was disoriented and also needed to regain his sense of proprioception. When my son told me about those experiences I was astounded that he was able to articulate himself so well about such an abstract feeling. Thankfully there are accommodations in his IEP for pacing and stimming, and he is given the freedom to move around the back of the classroom when necessary.

(*If any of you cringed at the term “autistic” I would encourage you to research the “Identity-First” movement or the neurodiversity paradigm. The concept behind Identity-First language is described as such by the page “Identity-First Autistic”: “As autistic people, we see our neurology as an integral part of who we are – not a separate or negative add-on.” Saying “autistic” or using similar terminology acknowledges the effects that unique neurological wiring or disability has in shaping a person’s identity and the way they interact with the world. Autistic or neurodivergent people hope for acceptance and accommodation.)

Then there’s me. I am a 40-something woman who has known for decades that I am neurodivergent, but it took years to get a proper diagnosis (mis-diagnoses are common for women). When I was in my 30’s I was finally identified as ADD, even though in my 20’s a psychologist insisted I wasn’t. Then about a year ago a therapist affirmed my suspicions that I also displayed characteristics of being on the autism spectrum.

For me hyperfocus means that it is all about The Thing. The Thing is whatever I find most interesting or important at the time. All I can think about is The Thing. All I want to do is The Thing. I get irritated at anything that keeps me from doing The Thing, even if that something else is actually important.  Continue reading

See Different, Be Different: Thoughts on Neurodiversity and More

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I was recently asked to speak at at Autism Awareness Month event that was held by the exceptional education department of our local school system, and the audience was parents of autistic children. This is the transcript from that event, and is basically most of what I want to say about autism and neurodiversity all crammed into one post. But first some disclaimers: I am not perfect, I screw up all the time, and am still fumbling my way through this parenting thing.

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I am also not an “expert,” nor am I Autistic, although I am neurodivergent. I am a mom and an advocate and a writer,  and I learn through experience, by asking a lot of questions, and by doing a lot of research.

My perspective may also be different than yours, but one thing I have learned along this journey is to not devalue someone else’s opinion just because their situation isn’t the same as my own. We should be open to considering one another’s viewpoints. We also should avoid the danger of turning this into a competition of whose struggles are worse, and unfortunately we have all seen that happen.

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(Image is inspired by the post “20 Things That Parenting a Child With Special Needs has Taught Me About Life in General.”)

We ourselves may have fallen prey to the dangers of comparison, by saying things like, “Well, at least your child can…”, or “You don’t know what it’s like to…” Friends, let me warn you that kind of thinking is a trap. Parenting is hard, I know that. Some days are exhausting and even sad. Life in general can be hard, and living with any sort of disability can be hard. But we are all in this together, and no matter where we are, or where our children are in the journey, we can learn from one another. Then when we get weary we have each other for support.

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One way I try to help encourage other parents and support the Neurodiverse community is by writing and sharing my voice. I hope to help make the world a safer place for those who are different. I want to help de-stigmatize DIFFERENT. Because without our differences, the world would be VERY boring. Different is the new normal!

So I came up with the slogan: See Different, Be Different (image at top of post). Different is not bad, it’s not broken, or as Temple Grandin says, different is not less.

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Our Talk with Christopher Ulmer of Special Books by Special Kids: A Seriously Not Boring Interview

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My youngest son and I recently had the opportunity to talk via Skype with Christopher Ulmer, aka “Mr. Chris,” of Special Books by Special Kids. Usually Chris interviews other people, so we thought it would be fun to turn the tables and be the ones asking the questions to learn more about him and his students. For those of you who may not know who he is,  Chris is an exceptional education teacher in Florida. His unique and affirming teaching style as well as his extraordinary class of students has captured the hearts of many and become a viral sensation. The first video to gain widespread attention showcased his “compliment time” with the students at the start of each school day, and it was featured first at “The Mighty” and then in an article on ABC News. From there the message spread all over the mainstream media, reaching far beyond the typical “Awareness” circles, and Chris even made an appearance on Rachel Ray’s television show. The messages from Mr. Chris and his students continue to spread all over the internet, and the page has even been mentioned on unexpected sites like MTV, prompting Ashton Kutcher to say, “Mr. Chris, you’re a great teacher.”

Two videos from our conversation are embedded at the bottom of this post. In the first video he talks with my youngest son (his older brother decided not to participate because this isn’t his kind of thing 😉 ). Noodle Dog makes an appearance, there is some Minecraft talk in the middle, and an eyeball crossing contest at the end. Chris described his teaching philosophy and what influenced his decision to become an exceptional education teacher. I was also finally able to ask something I have long wondered about; it seems, when watching the SBSK videos, that teaching in a private school setting allows a level of flexibility in the classroom that wouldn’t be able to occur in a public school setting (for many reasons). He addresses that, as well as whether or not they have any sort of standardized testing. He also recalls an excellent and entertaining musical concert performed by his students, and all the work that went into it. You will have to watch the video to hear the fun story.

Update: here is the short “highlights” version of just the silly parts. 🙂

 

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Inclusion In Action: How My Son’s Classmates Responded When They Learned About Autism

 

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After my son was first identified as Autistic* I constantly worried about how the world would treat him. Those worries escalated when he was at school interacting with classmates and under the care of others, but with the help of his teachers we found a way to help foster a positive, supportive community for him. It was accomplished by talking to his classmates about Autism, and the results have been more effective and encouraging than I ever hoped.

My son is outgoing, energetic, and has a knack for improv comedy. His big brother is his best friend and his favorite things are Minecraft, sea lions, and Lego. He is also Autistic with some social, sensory, attention and impulse control issues. As “Twice-Exceptional” it seems at times that he is caught in between the typical and special-needs world, so sometimes he struggles to find a sense of belonging and acceptance. As he grew older those struggles became greater, and we hoped to find a way to help.

Some of you may be wondering why I would want my son’s classmates to know about his Autism label. Wouldn’t that complicate things because he would seem MORE different? I believe honest dialogue about special-needs is crucial to acceptance, and that children can be surprisingly open-minded about diversity and uniqueness. If you tell them, “Different is cool,” they will believe you. The trick is to explain those differences in a matter-of-fact and positive way, before they can be affected by the prejudices of the world. (It also helps if you do it in a voice like Matt Smith’s Doctor when he said, “Bowties are COOL!” And yeah, I totally made this meme.)

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I once read these words, “If you’re the parent of a child with AS & worried about what will happen if other students find out, here’s a thoughtthey already know. They know they have a classmate who has different and difficult behaviors. But they don’t realize the reasons. And the reasons they imagine are much worse than the facts.” I felt that my son’s classmates were more likely to be kind if they understood more about him. As the article stated, “… children are never too young to learn that…we need to treat each other with patience, kindness and understanding.” I was also inspired by a presentation given by the Executive Director of our local Autism Society chapter, who had talked with her own son’s classmates when he was in school. She felt that it was important to share with classmates about strengths first, then weaknesses, and then involve the other children by stating ways that they could help.

Taking that into account, my son and I first shared with his classmates about Autism when he was in 1st grade. We did it again when he was in 2nd, both times in conjunction with his Star Student presentation. Any time I discuss Autism it is with his permission and his input, and he is proud to talk about his “special brain.” We wanted to show that Autism was just one of the many things that makes him interesting (if you want to read the script I used you can click here, The Star: Telling classmates about Autism). We made sure to point out that even though my son was a little bit different that was okay, because he also was just the same as the other students. Both times I contacted the teacher first to gain permission, and gave her a copy of what would be said so that she could be prepared to answer any questions the students may have later.  Continue reading