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Posts Tagged ‘autism awareness’

It’s a Dog’s World

Here’s an extended metaphor. Imagine a world where the only possible pet is a dog. Dogs are everywhere, and people know a lot about them, but they’ve never heard of any other kind of pet.

Imagine a family going out and getting a puppy, a cute little furry puppy to love and care for and play with and take on long walks. But they soon begin to have concerns that something is wrong with their pet. He is soft and cuddly and adorable, but…

Well, he can’t seem to learn how to walk on a leash, or sit on command, or fetch. His tail is much too long, so long it drags on the ground at times, and he doesn’t wag. They thought he was wagging once or twice, but then he growled and snapped when they tried to pet him. He’s usually affectionate, but  doesn’t like having his belly rubbed, and can even become violent when his family tries to scratch his tummy. They worry about his abnormally small size and his odd sleep schedule, and about how he stretches in ways that can’t possibly be healthy. He only picks at his food, won’t chew bones, and spends a huge amount of time licking his own fur instead. He frequently manages to get onto counters and shelves that a dog shouldn’t be able to get up to, and they are terrified he will fall and get injured. He doesn’t play well with other dogs,and is easily frightened by all sorts of unexpected things. Sadly, he’s never barked, not even once. Instead, he makes odd squeaks and growling noises.

They talk to their friends, who agree that they’ve never seen a dog act like this before. So they take him to the vet.

The vet agrees that there is something wrong. She’s seen dogs like this before, she says, and while there are some things that can help, she is afraid their pet may never be quite normal. She recommends certain foods, and intensive training in obedience school to help the puppy learn how to take better walks and tolerate tummy-rubs. They should spend more time at the park, where he can learn to be less frightened of the bigger dogs. He might never bark, she says, but he’ll probably find other ways to express when he is excited or needs to go out. They should discourage him from making those strange growling sounds, as they will confuse other people and dogs into thinking their puppy is aggressive. She knows it’s hard to have all those other families staring at their weird pet and telling them that they’ve done a lousy job training him. She assures them it isn’t their fault he turned out this way. In terms of appearance, it might help to surgically remove part of his tail, and have him wear a body brace to keep his back from sagging and bending too much.

Now, those of you from planet Earth may have figured it out by now. The problem with this dog is that it isn’t a dog at all– it’s a cat! But these people– the family, their friends, the vet, the trainers– don’t know anything about cats. They only know about dogs.

So what can this family do? Well, they can embark on the program recommended by the vet, and try to make their cat as dog-like as possible. Or they can adapt to life with a cat. They can learn that his “wagging” is actually a sign of unhappiness, that his belly is too sensitive to be petted, and that his strange growling noise– purring!– means that he is content. It’s not going to be easy– they will be the only family on the block who can’t put things on a counter or shelf to keep them out of reach, and they certainly can’t let him off his leash at anyone else’s house. Other people and dogs are often going to be frightened by his purring, assuming he’s growling at them. He doesn’t enjoy many of the activities most dogs do– swimming and frisbee and chew toys– and they worry that he will be lonely and bored much of the time. And what if he gets out of his harness and runs away? Whoever finds him will think he’s a wild animal when he doesn’t respond to “sit” and “stay,” and he might get treated as a stray even though he wears a collar. No matter how dedicated his family is to making their life cat-friendly, there will be some things that will simply never occur to them, like catnip mice and litter boxes.

It isn’t going to be easy trying to change so many things on their cat’s behalf. But the cat is never going to become a dog, either. He may learn to play with dogs, and even enjoy it, and eat their food and walk on a leash and generally fit in well enough for most people to assume he’s just an odd breed. Or he may not. Perhaps only a few people will ever think that it’s ok for him to look and act completely like a cat. But we can dream of a future where people know enough about cats to keep them happy and healthy, even in a dog’s world.

Autism Awareness Month: Before You Light It Up Blue

March 27, 2016 2 comments

It’s almost April, and you know what that means. “Autism” is the word of the day. Speaking of words, many of us were told:

“Sticks and stones may break my bones, but words can never hurt me.”

I think we all know that’s not true. Words can hurt a lot, even words that aren’t meant to be hurtful. So I want to talk about words.

If you are planning to raise awareness about autism this April, please remember: children and adults diagnosed with autism will be listening to your speeches and reading your blog posts and articles. This means your kids. If not your kids, someone else’s. And they often hear or read words like “tragedy,” “crisis,” “burden,” “expensive,” and “stressful” when describing their lives.

These words can hurt feelings and damage self-esteem. They can make children feel guilty and miserable, because something about them– autism– causes so much trouble and unhappiness. They might even wonder if their families would be happier without them. And no child should ever have to wonder that.

I’d like to suggest some other words to use.

  • No one wants to be part of an “epidemic” or “public health crisis.” Instead, say “many more people are now being diagnosed with autism.” Also, please don’t compare autism to life-threatening illnesses like cancer. It isn’t fair to either autism or cancer.
  • Many people argue about whether to say someone is “autistic” or a “person with autism.” Read arguments for both sides (the formal terms are “identity-first language” and “person-first language”), especially ones written by people with an autism diagnosis. If you are speaking about a particular person, ask them which term they prefer. Saying that someone is “on the autism spectrum” is usually a good compromise. Please don’t say that someone “suffers from” autism– it’s just too depressing!
  • Instead of saying that autism is costly, stressful, and a burden on families/society, talk about how to make things better! Say things like “autistic people and their families need our support and understanding,” “people on the autism spectrum deserve access to more services and opportunities” and “we can all contribute to a better future for children diagnosed with autism.” Remind the public that proper education and work accommodations pay for themselves because they allow people with disabilities to live more independent and productive lives. Most importantly, remember that finding happiness and meaning in life are possible for all human beings, no matter how severely impaired.
  • Suggest ways to help in your community. Encourage local businesses and organizations to plan autism-friendly events. Remind people to be patient and sympathetic when they see someone having a meltdown. Promote jobs for people with disabilities. Give money or technology to special education classrooms. Donate a book by an autistic author to your local library. Sponsor a disability-rights lawyer or expert on disability services to speak at a public event. Fund a field trip or summer camp for kids on the spectrum.
  • Share positive stories. Every life has success stories and wonderful moments. We see great strides forward in the world of autism every day. Young people like Carly Fleischmann, Ido Kedar, Dillan Barmache, and Jordyn Zimmerman are changing our understanding of autism, showing us how much is truly possible even for those who are profoundly disabled.

Create hope, not despair. Spread love, not fear. Move beyond “awareness” and aim for acceptance and inclusion. Our children are worth it.

A Call to Action

June 29, 2015 1 comment

[Keep reading. I’m not actually talking about autism]

No one wants to admit this. There is a crisis in this country and across the world. An epidemic, if you will. There is a terrifying large percentage of people with a certain disorder of brain function that involves major deficits in many key areas– including sensory perception, attention, reasoning, communication skills, the ability to prioritize appropriately, and expressive empathy (the ability to respond appropriately to the emotions of others). No one knows for sure what causes this disorder, but both genetics and environmental factors seem to contribute strongly.

These people need our help. Without intensive intervention, most of them will never recover, although some do improve greatly over time on their own. Unfortunately, very few of them are aware that they need help, and even fewer accept that help when it is offered. Teaching them is a long, laborious, intensive process requiring massive amounts of repetition. They just don’t listen. Even when we carefully tailor lessons to their learning style, they learn so slowly, and are so resistant, that it is easy for us to want to give up on them altogether.

We must not give up. These people require billions of dollars worth of services every year. They waste much of their time on worthless obsessions and activities that are useless at best and outright harmful to themselves or others at worst. And while most of them are non-violent, far too many cause serious stress and even pose a physical danger to their families. Many of them become aggressive when asked to change even minor habits and beliefs.

Despite the vast amount of scientific literature on this population, we’ve made very little headway in terms of developing effective strategies to change their problematic behaviors. I should acknowledge that not all people with this disorder demonstrate those behaviors. Some are very high functioning– we tend to see them as quirky rather than burdensome. Others, however, are a serious challenge.

Something needs to change here. As hard as it is for us, as frustrating and heart-breaking as it is to reach out, day after day, to people who seem to have little hope of responding, we cannot simply give up. We need to put serious money towards research, towards training educators and therapists. We have to find a way to help these people become functional members of society, who contribute to the greater good and are no threat to themselves or others.

This tragedy must be halted in its tracks. Help fight the ravages of neurotypicality. The well-being of our children, our nation, even our planet, depends on it.

Suggested Questionnaire for Healthcare and Related Professionals – please share widely

October 27, 2014 7 comments

[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D

I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.

If you like this idea, please take this quick online survey!!!

If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.

https://docs.google.com/forms/d/1JB2s5dQxtZNLxP7CwbPFtQzU4-3QT6htxjYNhNpIssA/viewform

(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)

Why I write the things I do

So, I recently wrote a mini-article elsewhere (now available here: https://restlesshands42.wordpress.com/). I wrote the piece partly as a tongue-in-cheek parody of all the advice given about managing behavior in special needs kids… but I’m glad to see it being taken seriously as well.

The internet is full of information in the “autism community” (which consists almost exclusively of parents and professionals discussing autistic children) about how to “help” those of us who function differently, and how to love us unconditionally despite our flaws, and how to be “aware” of us, and especially how to change our behavior– kindly, lovingly, and with the best intentions.

But I see all this from the perspective of those standing in that spotlight (although I myself was lucky enough to grow up with a mother who believed wholeheartedly in letting me be myself and fought to put me in small private schools and other situations where I could function my best). And it’s an uncomfortable light to stand in.

When parents trade tips across the web on “managing challenging behaviors” in their kids on the spectrum, the AUTISTIC community (that is, autistic adults and young adults, and far more autistic children than neurotypicals realize are paying attention) sees a world that wants to fix us and make us into something other than who we are. We ask why we are always the ones who need to change. Why is foot-tapping (a common neurotypical stim) socially acceptable while rocking (a common autistic stim) is not? Why do parents and educators focus constantly on our differences and deficits rather than our strengths and joys? Why are we always the problem to be fixed, the burden to be endured, the puzzle to be solved, the ones who are “hard to love”?

Again and again, we press back. Echoing Amanda Baggs “In My Language” video (http://www.youtube.com/watch?v=JnylM1hI2jc) Julia Bascom writes “until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me” (http://juststimming.wordpress.com/2011/10/05/quiet-hands/). I wrote this article to remind neurotypicals to make that effort to move 3% of the way towards our world, towards our ways of thinking and communicating and interacting.

I also hope it will make them more aware that it is hard to do things in an unfamiliar way, to maintain constant awareness of your posture and words and how much noise you make. That it is frustrating and embarrassing to see yourself spoken of in clinical terms, to have your actions and interests dissected and discussed by all and sundry, to be singled out and put on display for simply going about your daily lives, pathologized for your personal quirks, medicated for your attempts to express yourself, misunderstood frequently, and constantly, constantly corrected.

And I wrote this for people on the spectrum, to remind them that they are not always in the wrong, that their needs are valid and should be respected, that it’s ok for them to feel confused and burdened and conflicted about their loved ones as well.

And I wrote it for all of us, to remind us that “normal” is not some objective gold standard that we should all struggle to achieve, but all too often a form of tyranny by the majority, and that creating a more equitable society requires that we take multiple perspectives into account when we decide what our gold standards should be. I wrote it to remind people that good intentions are not enough, and that just because something works for you doesn’t mean it will work for me. Being more “normal” would not make me a happier person, and if you try to force me to be more like you, it’s only going to hurt us both. So let’s learn to respect and accommodate each others’ needs. Let’s remember to make the efforts and the changes more mutual. And just maybe, we can build a world that isn’t so very frustrating for us disabled and neurodiverse folks to live in.