Autism: a lot more needed than “awareness”

Uh-OH, Aaron's got an idea

Go Aaron

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April, 2018 is Autism Awareness Month

Is Autism just the Disability du Jour?

April 2 is World Autism Awareness Day and in the US, the month of April is “Autism Awareness Month.”

Autism and the public service announcements are everywhere on TV:

• 1 in 88 children is now diagnosed with ASD.
• Early Childhood intervention programs help.
• People with autism can be smart.
• A child with autism can happen in any family.
• Many celebrities have children with autism.
• Shows as diverse as Desperate Housewives now have storylines about people with autism.

This is all good, right?

Gone are the days when parents were told their children were withdrawn because they were poor parents and “refrigerator mothers.”

Gone are the days when, with my son Aaron, we were told, “The chances of having a child with autism were 1 in 10,000.”

Gone are the days when we were told Aaron would always be in the “idiot range of mental retardation.”

Gone are the days when anyone who was different was sent to the “state hospital or institution” to make the community safer.

Gone are the days when people with intellectual disabilities were given “radiation” in their oatmeal because they weren’t really human and were only useful for human experiments.

Gone are the days when, there was no mandate for early intervention programs.

Gone are the days when, we segregated people with autism into separate classes, schools and institutions away from their brothers, sisters, neighbors and community…. But wait!

Gone are the days when no one knew the best educational practices and the children spent hours doing meaningless tasks focusing on “curing” the child. But wait!

As the “autism awareness” campaigns seem to focus on using fear tactics to raise more money and get more segregated “autism-only” programs, I have to wonder if this really is a good idea.

God help us if the current trends toward “autism only” programs undermine everything we have fought for and learned in the last 40 years.

Some of the things we have learned are:

All people are human and have dreams, feelings, and hopes for the future.

All people have gifts and strengths.

All people have personalities and can love.

All people can learn.

All people benefit from early childhood programs.

All people benefit from differentiated instruction and universal
design.

All people need support and to learn to be interdependent on others.

All people have the right to life, liberty and the pursuit of happiness.

All people can communicate and have important things to say.

Behaviors equal communication.

People with autism and other labels can be contributing members of society.

People with the label of autism, are not much different than the label of cerebral palsy, spina bifida, ADHD, cancer… or people who are poor, elderly, sick… er, “normal.”

The real way for the general population to understand and have an “awareness” of people who are different than they are, is NOT just a television campaign or a designated month.

The best way is for everyone to have first hand experiences:

Do you know that person’s name?

Do you see them in the grocery store?

Do you share time with them at Church?

Do your children go to school with them, play on their sports team?

Are they invited to your house, to birthday parties?

Do you see them working in real jobs, doing volunteer work, sharing their talents?

Do you enjoy being with them?

Do you allow them to grow up and become adults?

How can we teach self-determination and better communication?

SHOULD NOTS and SHOULDS

Autism Day, Autism Month, Autism Awareness SHOULD NOT be about spreading fear or all about a “Diagnosis.”

It SHOULD be about the difference between having a disability and having a handicap?click here
Autism Awareness SHOULD be about more research, certainly. But, the research should be to ask questions, NOT to provide answers—in 2018 we don’t know enough to have answers.

Did you know that Howard Gardner studied people with autism when he came up with the idea of “multiple intelligences”?

Did you know Vygotsky examined people with severe communication problems when he developed his communication ideas on “scaffolding”?

Autism Awareness SHOULD NOT be about raising more money for those parents, professionals, for-profit and non-profit groups that are on the “Autism: disability du jour” bandwagon. They are no better than speculators benefitting from a war.

Autism Awareness SHOULD NOT be about making more segregated autism-only day programs, farms, residential communities, schools, classrooms, soccer leagues and summer camps.

Who would ever think putting a group of people with communication issues together would be a good idea? What they need most is interactions with others with strong communication skills.

Autism Awareness SHOULD BE about noticing and appreciating ALL people who are part of our human community.

It SHOULD NOT be about charity, pity and sympathy but rather about giving ALL people the freedom to grow up and be the best person they can be—just as they are: able to make their own decisions; be treated as adults; made mistakes; and, loved because of who they are.

Autism Awareness SHOULD be about the concepts of “normalization” and “inclusion.” It SHOULD be about looking at people in the normal lifespan, normal opportunities. Not about fixing them with lots of therapies and aversive methods of behavior control.

Certainly, I have written many times about how Aaron and others need more support and people who are trained to work with them.

Certainly, I agree there is a desperate need for help for parents of adults to be able to find resources for their children.

Certainly, I have written of what a “Dream Plan for Aaron” would look like. And that includes Awareness–But much more.

Is Diversity Beautiful?

Challenge

People with autism have taught us much about love, interdependence, talents and courage.

Can you try to get to know a person individually? Can you listen to them? Can you help them be a bigger part of your life?

If so, then April can be a month of great hope.

The earth’s bounty blesses us with many different kind signs of spring. The flowering magnolias, dogwoods, apple and pear trees each add color and diversity to our world. The tulips, daffodils, crocuses each speak of the beauty of variety and remind us the earth is being reborn. Would we only want one kind of tree blossom or flower? Should we identify, diagnose and separate the trees and flowers and only celebrate the most durable or productive? Or is their beauty even in the most vulnerable blossom?

Can we appreciate and value a great diversity in nature? In people?
Maybe the most beautiful flower in the world, is really the beauty in a person.

Comments

I’m hoping you will share your comments and thoughts about people with autism? What are you doing this month to celebrate diversity in ALL people?

Keep Climbing: Onward and Upward
All my Best,

Mary

Autism Awareness Day| Direct Action is Better

Autism Awareness Day at the Opera

Autism Day at the Opera

April is Autism Awareness month. The United Nations General Assembly even designates a World Autism Awareness Day.

World Autism Awareness | Gone Amuck

For the last week, I’ve been following the comment streams on Twitter (#Autism, #ASD, #WAAD…) and other social media outlets like Facebook… and I wonder if the whole world is nuts.

My son is 43, has autism and we are desperate for help. So I appreciate the need for autism awareness and DIRECT ACTION.

For autism awareness day, I’ve learned some people are buying blue mascara and lipstick to spread “awareness about autism.”

Others are using April 2nd as a “retail therapy” day to buy new clothes in blue.

How will Autism Awareness Day impact the lives of people with autism and their families?

For the life of me I can’t imagine why blue lights at the Sydney Opera House, The White House, Empire State Building or the house next door will change a thing–except for the blue light bulb retailer.

Put Time and Money where your Mouth is

It makes more sense to me, that the expense of buying blue lights, hiring a team of workers to install and operate those lights for one day–is just dumb and a waste of opportunity.

Using those same dollars, the Opera House could invite families or parents to an evening of the opera. Sure, the Sydney Opera House might not get the same press, but the impact would be direct and measurable. Real families would have the treasured opportunity for a night of respite.

I understand the White House is meeting with some advocates for autism which is an action step–much more useful in my opinion to a blue illusion.

The Empire State Building–well, there were those romance flicks with the hearts on Valentine’s Day, but really?

Action–not Hype

Now good people and advocates are working hard for all this autism awareness, and I know my skepticism sounds like sour grapes or something mean spirited.

I’m just tired of being used and being the victims of charity.

Past Experiences with the Charity Model and hype

One time our family was on a trip to the Smokey Mountains. My husband Tom, an avid golfer, passed a golf course which had a huge sign over the gate “Welcome Special Olympics.”

Tom went to the front desk and asked if Aaron, our son with the label of autism, could ride in the golf cart as he played golf.

The desk clerk looked confused. Tom said Aaron would be sitting next to him and would not even be on the course. He also told him Aaron has accompanied him on other golf courses and it worked out fine.

As the clerk continued to stammer around–Tom pointed to the “Welcome Special Olympics” sign.

The young man shook his head,

“Tomorrow, our Special Olympic fundraiser is for radio/TV personalities, the Governor and all kinds of influential people coming to play golf. NOT–those kind (pointing at Aaron). This is our public relations and publicity event for the year. It isn’t for them. We don’t allow them on the course.”

Real People–Not Causes

At a time when getting services for children and adults with autism and their families is desperate, my hope for tomorrow is that people will spend a couple minutes with actual people who have the label of autism.

If you want to dress up in blue from head to toe, with blue eye shadow and lips, more power to you. But somewhere in the day, actually touch a real person. Make a difference in an actual life.

Make the Autism Awareness Day, more than a media moment.

Take the opportunity to begin change–one on one.

Keep Climbing: Onward and Upward
All my best,


Mary

What do you think?

Are you wearing Blue? Are you going to spend a couple minutes with an actual person who has the label of autism?

Chocolate Covered Fun for All Ages and Abilities

Chocolate Covered Strawberries

Mouth watering?

Don’t these chocolate covered strawberries look delicious?

For the Holidays, or any day, what about making chocolate covered treats or gifts for the people you love?

Chocolate Covered Fun for ALL AGES and Abilities

Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.

Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course if you want to go gourmet, hey, yum.

Partial Participation

Chocolate Covered Strawberries
Creative Commons License photo credit: mbaylor

“Partial Participation is Better than Exclusion from an Activity” (Lou Brown)

Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.

For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.

Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.

When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community based program and … every time our family went into the community grocery store.

There are lots of things Aaron can do to partically participate in every activity.

When Aaron is part of the group, when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.

This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.

If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile 🙂

Be Creative: Lots of Ideas

heart-crispies
Creative Commons License

Dip White or Dark Chocolate Ideas:

Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods of any size
Marshmallows
Cookies
Graham Crackers
Candy Canes
Rice Krispie Treats

How to Make Chocolate Covered Pretzels:

Age-Appropriate Activity

Activity for All Ages and Abilities

Things You Might Need:

Microwave-safe glass or measuring cups

Cooking spray

Bags white and dark chips (12 oz.)

Spoon

Pot Holders

Cookie Sheet

Wax paper

Bag of pretzel rods (12 oz.) or other food

Small candies or sprinkles

You Tube Video Demonstration

Task Analysis or Recipe

Chocolate-Covered Pretzels with Sprinkles

Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels

Ingredients:
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles

Directions:
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.

Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)

Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved

Gifts and Favors, Holiday Variations

President’s Day, Halloween, Easter, 4th of July, Christmas Variations

All American Holiday

Gifts and Favors

Stick Pretzels

Paula Deen’s Christmas Pretzels

Halloween chocolate covered pretzels

Comments:

Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?

Have you any ideas on this or other projects?

Keep Climbing: Onward and Upward

All my best,
Mary

Other Related Articles:

It’s a Jungle Out There| Inclusion in the Grocery Store

Language of the Heart| Heartaches and Heartsongs

Busy vs. Bored| Life Space Analysis for People with Disabilities

The Animal School| Differentiated Instruction

Test Questions| Inclusion or Segregation?

Teachers| Segregation or Inclusion

Happy Ever Afters| One For The Money

Norm Kunc: What’s Your Credo?

Language of the Heart| Heartaches and Heartsongs

Big Heart of Art - 1000 Visual Mashups
Creative Commons License photo credit: qthomasbower

In the post: Caring Community| People First Language we talked about the power of labels, negative stereotypes and the paradigm shift of looking at all people as PEOPLE First!

Today, on Valentine’s Day, I am asking you to think about how you use words:

Do my words cause Heartaches?
Do my words cause Heartsongs?

What are you doing?

WHAT are you doing?

What ARE you doing?

What are YOU doing?

WHAT THE HELL ARE YOU DOING!!!!

The same words can be said in anger or with gentle concern.
The speaker, the listener, the context of the communication, as well as the intent all make a difference.

Parents, Teachers, Coworkers, Friends, Enemies… We have all been misunderstood and misinterpreted. We have all wished we could swallow what came out of our mouths–take back our words. We have all been both aggressors and victims and have given heartaches as well as heartsongs.

HEARTACHES: “What’s that mess on your shirt?”
HEARTSONGS: “I see you have paint on your shirt.”
————————————————————-

HEARTACHES: “NO!”
HEARTSONGS: “Let’s talk about this before you decide.”
————————————————————

HEARTACHES: “Get over here right now!”
HEARTSONGS: “I need you with me.”
————————————————————-

HEARTACHES: “I told you so.”
HEARTSONGS: “That was harder than you thought.”
—————————————————————

In the comment section, let’s share some ideas on how you could make each of the following examples into either a heartache, or a heartsong?

Scenarios: Heartaches or Heartsongs.

1. Sara is eating breakfast. The bus is coming in 5 minutes. She spills her juice while reaching for the cereal.

What could you say that would cause a heartache?

What could you say that would cause a heartsong?

2. Ken wants to help his friend wash the car. He accidentally squirts him with the hose.

What could you say that could cause a heartache?

What could you say that could cause a heartsong?

3. Emily comes home from work. When asked about her day, she begins to cry and says, “Jim doesn’t like me.”

What could you say that could cause a heartache?

What could you say that could cause a heartsong?

By speaking with your heart, you may be able to bring out the very best in people. Give them a chance to talk. Listen patiently.

And of course, there is always the quote: “I know that you believe you understand what you think I said, but I’m not sure you realize that what you heard is not what I meant.” But we’ll save that for another post.

I’m wishing you a day filled with heartsongs. May you have many opportunities to give them and to receive them. Spread the love.

Keep Climbing: Onward and Upward
All my love,


Mary

Comments:

Do you have any examples of heartaches, heartsongs?
Heartaches turned into heartsongs?
Use the examples above, or share some from your own experiences.

Adapted from Project Prepare, Ohio (1995)