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, 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

Holocaust Remembrance and Nazi Eugenics

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Many years ago I had the privilege of meeting a Holocaust survivor during a chance encounter in the store. She was a gracious, gentle woman who had been imprisoned as a child. The numbers on her arm were a painful reminder of the dark acts of which humans are capable.

What stayed with me the most was that the hand-inked numbers on her arm started out uniform, but then became more and more uneven and jagged. My heart wept as I pictured that small child fighting against the torture of each new number with increasing intensity. It broke my heart to know that someone so young had experienced such horrors.

When I became a mother those images took on new meaning. I learned that Nazis not only targeted Jews, but also waged a eugenics campaign against those with disabilities. The evils of the Holocaust somehow seemed even more horrifying with the realization that my own child could have been a target.

Is he more safe in today’s world than he would have been back then? Is society more accepting, more caring, more unified?

Let us strive to be better. Let us not forget the evils of the past, or we risk making the same mistakes again.

I reflected upon these things when I first wrote a post about that life-altering encounter, and I thought it seemed appropriate to revisit on Holocaust Remembrance Day :

On this day I stop to remember, and ponder, and listen. I reflect upon the atrocities committed by a group of people driven by greed and a lust for power, blinded by prejudice. I pause to hear the voices that cried out, yet were silenced too soon. I will not forget them.

Many do not realize the expansiveness of the list of groups targeted by the Nazis. It included not only Jews, but also “Gypsies, Poles and other Slavs, and people with physical or mental disabilities.” During their quest for racial purity the Nazis strove to eliminate the “unfit” as well as any who would oppose their quest for domination. Continue reading

Why Some “Good Deed” Stories Can Do More Harm Than Good

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Another day, another “feel-good” story. But what if these stories actually do more harm than good? Before you judge me for being cynical, let me explain.

What often happens is there is a person who has some sort of disability and they might also need some assistance. Then some “typical” person decides to be kind and help them. Usually that’s fine. Great even. We should reach out to our fellow humans. The world needs more genuine compassion and caring.

Sometimes a third-party happens to witness the scene, and interprets it as the grand gesture of an amazingly generous individual who took their time to help out a poor, pitiable and helpless disabled person. Then pictures are taken without asking the permission of all the parties involved, because they want to spread the amazing, feel-good story throughout all kinds of news outlets and social media platforms. Still sound great?

There is nothing inherently wrong with positive stories about people with disabilities or tales of good deeds. It’s the motivation behind it or the way the subject is handled that can be problematic. Sometimes the individual performing the good deed or telling the story does so with motives other than just being kind to someone else; sometimes they do it for notoriety.

In other cases I don’t doubt that the overall intention of the story tellers was good, yet somehow things took a turn. Often that is the fault of the tactics used by the media, who love a heart-tugging, viral story. News sources often spread these “feel-good” messages at the expense of the dignity of their subjects, presenting the person with a disability as merely a pawn in someone else’s story. It is designed to make US, not them, “feel good,” and praises and elevates the person performing the “good deed.” These stories do all that at the expense of the recipient, often without their consent. Stories like this are commonly referred to as “Inspiration Porn.” Continue reading