April Should be Autism ACTION Month

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April may be “Autism Awareness Month,” but mere awareness is not enough. We need to move beyond awareness to acceptance, and turn acceptance into ACTION.

Why? The world is aware of autism, yet autistic people face microaggressions or even flat-out discrimination every day. Autistic adults are aware that many who claim to speak for the Autism community don’t actually ask Autistic people for their opinion. We are aware that many businesses refuse to give us a chance at meaningful employment. Parents are aware of the lack of sufficient resources to help their children thrive in schools. Children know what it feels like to be bullied and isolated.

It is not enough to be aware one month of the year, and yet sometimes it seems like the only people really paying attention to Autism Awareness Month are people in the community. The rest seem to just want to donate money to an Autism charity to ease their conscience.

Want to REALLY make a difference? ACCEPT. ACCOMMODATE. APPRECIATE. ADVOCATE. Take ACTION. Keep reading for some suggestions of ways that you can help improve the lives of Autistic people. We don’t need your pity, but we would appreciate your support.  Continue reading

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

Dancing With Flamingos: A Celebration of My Youngest Son

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Parenting my youngest child has been quite an adventure. He is funny, kind, smart, creative, exuberant, and autistic. Every day, it seems, he teaches me something new. His unique perspective on the world is often surprising, and the way he fully engages with whatever experience life has to offer is a constant delight.

Something that happened during a recent trip to the zoo is a perfect example. We were watching a flock of flamingos when suddenly they all began to vocalize at once. It sounded like a bunch of noise to me, but I noticed that my son had begun to move. First he bounced, and then he was dancing; feet shifting, arms outstretched. He instinctively sensed the rhythm and the music in the flamingos’ calls to one another, and he couldn’t help but join in. His body demanded it, and he gave himself to it freely and joyfully.  It was beautiful to see.

My son dances quite often, no matter where he is or who is watching. His big brother asked him once, as big brothers do, “Why are you dancing?”

My youngest simply replied, “I do what I want!”

He often operates on pure instinct and emotion. 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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