Tag Archives: Autism

Blue

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Yet again, a certain organization has spoken. Well, it’s one person who happens to have a large following. And following is the correct word in this case. I get that the idea of a cure for Autism is desirable to some. But like many other things, it’s nowhere in sight. Which means instead of puffing from that pipe, maybe you should be focusing on what’s in front of you.

There have been a number of pieces written about this latest speech. The one that resonates most with me can be found here…http://www.emilywillinghamphd.com/2014/12/on-autism-speaks-suzanne-wright.html

If you took the time to read the blog….I am not less than. My children are not less than. My students are not less than. Your family members are not less than.

I am not a puzzle piece. I am not the color blue. I am not “missing” anything except acceptance. Why is it okay to assume I am deficient because I don’t think the same way as other people? Newsflash!  We don’t all think the same.

One of my favorite social media pages can be found here….https://www.facebook.com/ColorTheWorldAutism

Please stop following and start leading. Help others understand that people are not defined by catchy phrases and “assigned” colors. There are so many organizations in our communities that directly assist people instead of spending millions on promoting one individual’s agenda that you should have no problem becoming both part of your community and part of the solution.

Live. Learn. Love. Accept.

Conform

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This little light of mine, I’m gonna let it shine.~ Harry Dixon Loes

 

Here we are again, in the midst of what many consider to be an important time of year. My social media feed is telling me how to wish everyone a wonderful season, in language meant to show respect for every single person’s beliefs. Honestly, I don’t know what the cashier at Walmart believes. Do I risk it by using one of the phrases or just nod my thanks? Social dilemma?

It isn’t just the holidays (oops, that implies Holy Days, which might offend someone). I struggle with all kinds of celebrations. I also struggle with social demands…requests to fit in with a group. I think through thousands of things before I speak. Before I accept or decline. Before I act. It can be quite exhausting.

Conforming is exhausting. Yes, I accept these expectations as part of getting along, but that doesn’t mean it’s easy for me. The best thing I can compare this feeling to is the need to have the latest brand of clothing or shoes or to be seen with the “in” crowd. At least you can purchase those things (yes, even the crowd; see celebrities) and blend in. But when you’re wired differently and no one really knows, it’s a huge challenge.

So I don’t always fit in. I’m old enough to get that and live with the fact that I rub some people wrong. I worry about people younger than me who still struggle to conform. There is so much emphasis on fitting in at school, at the store even at church that it’s no wonder parents are getting burned out. There are so many expectations of quiet, well-behaved (yeah, perspective matters) children that just aren’t natural. I grew up with children should be seen and not heard. I learned as a parent that not hearing my kids meant they were up to something….

So, here we are. What to do?  My answer…let your light shine. Together we make up a beautiful portrait of humanity. Sure, we need to respect each other (hence the requirement for conformity), but we don’t need to be exactly alike. Our differences make us stronger as a whole. Let’s teach our kids that being different is okay. Let’s teach our kids that each light is valuable and part of the chain that keeps our paths illuminated.

And for those who wonder…the cashier wished me a blessed day. I wished her a Merry Christmas. I’m not totally clueless…..

 

 

 

How to Love Me

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At first blush, it seems simple. Just decide we’re compatible and let it roll from there. In reality, it’s messy, because I’m human just like you. Regardless of what religion professes about love conquering all, it rarely does. Probably because all the other emotions get in the way.

People do things in the name of love all the time. Some are really sweet gestures, like remembering a birthday or bringing home flowers just because. Some are much grander, like marrying for better or worse and meaning it. Or giving up a kidney for a stranger. Or even being an organ donor so others may have a shot at a life after you have passed. Those are some pretty grand gestures of love.

But what of the day-to-day love that we all need? I know I’m difficult. I have my way of doing things and I can be pretty stubborn. I can do many things that people without Autism can do. I can even feel the judgment from others that I’m not Autistic enough to be a member of their tribe. If we truly love one another, why do we keep insisting on labels?

Labels separate us from them. By nature, they divide groups. Labels make it easy to say “I hate cheese” without even trying all the different flavors of cheese out there. A blanket statement about a labeled group is so much easier to use than to get to know all the different types of people in a group.

Autism is a spectrum disorder. There are people who struggle with what we generally consider the most basic of tasks…self-care and communication. Others struggle with academics and social situations. Still others experience awkwardness in conversations. We all have the same disorder. And, I can assure you, we all want to be loved.

So, how to love me. Accept that I’m different and it’s okay. I do the same for you. Yep, that’s right. Some of the stuff you do strikes me as pretty strange. That whole “look me in the eye thing” is weird. Your love of dill pickles? Um, yeah, not touching those. See, it’s okay. Love me for being different and showing you different things. Love me for expressing thoughts that you may not have considered. Love me for all the quirky behaviors I have. Because you know what? You have some pretty quirky things going on too.

Most of all, just love me as a fellow human being. Being different doesn’t make me less worthy of your love.

It’s Cool

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This week brought several stories about Autistics into the news. I’ve read so many comments on social media about Autism that my head hurts. Why? Because people are arguing and judging things they don’t understand. While none of my contacts has said anything to me, I wonder if some of the commentary applies to me.

Jerry Seinfield stated in an interview he thought he might be Autistic. This has sparked huge debates about diagnosis and “attention seeking” behaviors. Some people seem to feel that the only “true” Autistics are those who are diagnosed by medical professionals and have severe impacts in their lives. Um, yeah. It’s called a spectrum for a reason.

I’d also like to point out that until recently (about the last 15 years), Autism awareness was pretty low. Unless you had classic Autism, with all the severe behaviors associated with classic Autism, you weren’t Autistic. Many people over the age of 35 are just now figuring out why their lives are what they are and it isn’t because of more stringent or even looser diagnostic guidelines. It’s because we’re becoming more aware.

Some of the commentary by non-Autistic “experts” indicates that people who self diagnose are wrong and trying to grab the spotlight. One BCBA flat-out said it should be illegal to self-diagnose. Illegal? I self-diagnose all kinds of things including colds, stomach bugs and other maladies. Thanks to the information that is readily available 24/7/365, people guess at their conditions all the time. Are they wrong? Are they doing something illegal? I think not.

John Elder Robinson is recognized as an Autism expert. He also has Autism. Mr. Robinson was the lone Autistic voice in an organization supposedly dedicated to helping Autistic people. He left that organization in 2013 because of their stance that Autism needed to be cured. Well, and the fact that the big line item in their budget is advertising, not helping Autistics.

In a piece on the blog Psychology Today, Mr. Robinson elaborates on the polarization of the Autism Community. Read the full article here: http://www.psychologytoday.com/blog/my-life-aspergers/201411/jerry-seinfeld-and-autism

Assume you actually clicked out to the article, wouldn’t it be nice if we could just embrace people and not rip them apart? I’d love to know why people are so suspicious of motives when public figures share information. Then I think about me. Here I am, writing this arguably small blog. I’ve outed myself on several topics. I have received comments like “I never would have guessed!” What is my motive? To help people become more aware.

So, there you have it. The more you know, the broader your view of the world. It’s so easy to isolate ourselves. Quick, name 5 of your immediate neighbors! I know I can’t.

It’s cool. We all are busy with our lives. My passions are not your passions. I appreciate people taking the time to read this little blog. I hope you’ll learn something. I hope you won’t judge me too harshly. Most of all, I hope you’ll understand that people are people…deserving respect for their journeys even if you don’t understand their path.

Judge Not

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For every action, there is an equal and opposite reaction.~ Sir Isaac Newton’s Third Law of Physics

Being who I am is complicated. If you nudge on part of me, something else shifts. Medically, this drives my doctors nuts because things happen that shouldn’t happen. Mentally, this is incredibly taxing. Trying to keep my ship on an even keel is a whole lot of work.

It’s not all done by me though. My family, especially my spouse, are fabulous. During my recent illness, I was in the land of “not fun” for about a week. It was really not fun for my spouse.

I’m starting to somewhat understand the talking heads that want to empathize with caregivers when they snap. In the last few days, I’ve found out that caring for me when I’m not well is hard. One friend said it was weird seeing me act mentally ill. Yes, that was an educational opportunity right there. The point is, I’m starting to “get it.”

That does not mean I condone the actions of those who snap and take it out on their charges. As I don’t remember about a week of my illness, I think I can safely speak for the people who rely on others to care for them, even when it’s really hard. There is pain and regret that I am so “hard” to care for sometimes. I feel remorse for putting my spouse through “hell.” I don’t remember the specific incidents, but I can hear the pain in people’s voices as they gently try to fill in the blanks for me.

Now imagine a person who can’t communicate as I am able. I feel all those things and can’t express them. Those are very powerful feelings to keep bottled up. So when I act up, I’m not trying to be difficult. I just don’t have any other way of letting you know what’s going on with me.

Empathizing with people and feeling compassion towards others are good things. They keep us human. Those qualities and the actions spurred within you balance out the people who don’t share those qualities and make life that much more difficult for others. Just don’t move into apologizing for others. It’s not your job.

The recent murders/attempted murders of disabled children were choices made by their caregivers. They were choices. The caregivers must now face the equal and opposite reaction of their behavior. We cannot define what those caregivers should feel. We cannot judge those caregivers. We can hold them accountable for their actions. And that is what keeps us as a society in balance.

Tears from Heaven

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It’s a sad day. You see, another child has been murdered by his mother. London McCabe was just 6 years old when his mother threw him off a bridge last night in Oregon. People should be outraged that another child died at the hand of his parent.  London had Autism and the media is already portraying his murder as his own fault.

Please, stop using “but” in your stories. There is no “but.” There is no excuse, especially not claiming that London’s disability drove his mother to murder him. The only time I see “but” in stories about parents murdering their kids is when the child is disabled. THERE IS NO “BUT!”

Today in particular I am angry to see London’s story alongside ballot measures….political actions…across the United States…that are attempts to define the value of human life. I don’t care what “choice” you are. Before you get all up in arms about “personhood” think about what you are willing to do to help the people who are already born…already in peril…already in need.

An innocent 6 year-old child was murdered last night because he had a disability. Any of you could become disabled in a blink of an eye. Do you want to be murdered?

Autism

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I am Autism. I am a parent. I’m a spouse. I hold a volunteer job. I’m a licensed teacher. I’m a Scout leader. I have two college degrees (almost 3). I’m an advocate. I’m a friend. I’m a caregiver. I’m female. I’m in your community.

I am Autism. You’ve met me. I tend to blend in as that’s what I was taught as a child. But if you get to know me, I’m quirky. Or weird. It seems like I know everything. I put pieces of information together faster than most. I get along in groups. I am fine by myself. I do better creating than I do following.

I am Autism. Like you, I am an individual. I am unique. No two people with Autism are identical…just like no two people of Italian descent are identical. There’s a reason you’re hearing more about Autism acceptance. It’s okay to be different. Rather than focusing on those differences, let’s focus on the fact that we’re all people

I am Autism. I see the world through my experiences They provide me with the means to understand the world. Honestly, that’s the same for everybody. What you know is what you work with. The difference is, I generalize my experiences. If one person does something, then every person will do the same thing. Unless… I have a different experience that shows me other options. It’s both rigid and flexible thinking at it’s finest.

I am Autism. I don’t intend to scare you or freak you out. I have routines and habits that are probably borderline obsessive. This is how I manage in a world that was designed with someone else’s logic. I’m trying to make sense of things. Sometimes the world becomes too much for me to handle and I withdraw. I’m not trying to be rude, but I need space to process that which overwhelms me.

I am Autism. All I ask is for you to accept my quirkiness. Accept that I see the world differently. Accept me and in exchange, I’ll accept you and all your quirks. It’s okay. We’re all a little different. That’s what makes us great.

Broken

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A broken bone can heal, but the wound a word opens can fester forever.~ Jessamyn West

We’ve all had the experience of someone saying something that cuts to the heart. Sometimes it’s malicious but most often it is failure to understand the impact the words have on an individual. I know you can’t control how someone feels. The perception is completely in the heart of the recipient. I wonder, if we thought more about the consequences, could we stay our voice until we are sure of what we want our words to communicate?

I’m having a rough go of relationships right now. I think back to even five years ago and how many people I could call on a moment’s notice and we could find something to do. Since then, many people have disconnected themselves from me. Sometimes, the words came and they were harsh. The number of people who have left my life because they didn’t know what to say is significant. But, I made new friends. I moved on. Life changes and so do the people who fit in it.

What did I do wrong, to chase people away? In some cases, I failed to nurture the relationship. I got so wrapped up in taking care of myself, I forgot to water my garden. And then I think, relationships are two-way streets. I don’t recall missing phone calls. I don’t think there were phone calls. I can safely say that chronic illness drives people away. Other people left because I starting standing firm for things I believe. Basically, I rubbed them the wrong way. Yet, some just faded away. I’ve been told that there are reasons for all this. I wish I could figure out those reasons.

I think I’ve burned a bridge unintentionally. I’ve been revisiting events and conversations for about it for 2 days now, looking at all the angles and analyzing the data. But there is still one angle that I can’t quite grasp. The words being used don’t make sense. Should I stay and try to salvage the relationship on the basis of it’s a misunderstanding that time will take care of? Or do I flee, torch in hand. It’s probably going to take a few weeks to put that relationship in the right place.

There is another relationship that I’m struggling with, a more personal one. I have made some new friends. I reached out and made considerable effort to connect. I guess I knew from the beginning that I was trying too hard. But, I really wanted to establish a friendship. Call that my social deficit…sometimes I just really want to make something great happen.

A few weeks into this process, I could tell I was an interloper. Another friendship existed and while I felt I could co-exist with that friendship, apparently I can’t. Conversations were had without me, even though the topic involved me. I knew what was happening by the tenor of the conversations. Little hints dropped here and there that I suspect were meant to soften the blow of being dismissed. I suspect that because I too have used this strategy. Letting people down gently is a noble thought that rarely works out.

I don’t like this feeling of dismissal. It feels like high school all over again where I’m just not good enough to be one of the popular kids. It shouldn’t bother me, but it does. I feel those same feelings of being strung along. Not quite to the level of saying I feel used, but I most definitely feel snubbed.

And then I realize that the other parties may not know how things look to me. Just because once I commit to something, I’ll stick with it until the end doesn’t mean anyone else will. Just because I work very hard to help people feel comfortable around me doesn’t mean they will. It’s just plain awkward.

So yes, I’m hurt. I’m hurt because these friends agreed to something and then backed out. I’m hurt because I was never really in the equation even though I was led to believe I was part of the equation.  I’m hurt because I wasn’t told the truth. I would still be hurt if I was told they thought I was party crashing, but I don’t think it would be nearly as painful as knowing that conversations were had and a plan to back out was implemented.

As one saying goes, some people are in our lives as lessons. Obviously, this week I needed schooling.  Lots of schooling. I needed to feel how my little white lies were hurting others. I needed to feel the sting of disappointment before I got too far ahead of myself. I needed to learn that while I crave connection, others do not.

So, your challenge. Try to use your words wisely. Don’t promise me a date when you have no intention of keeping it. If you can, think about making and keeping a date, even if it’s just for coffee. There’s so much aloneness in the world that your offer could be the lifeline I need to keep looking forward. The  hour you spend keeping me company is a gift in my eyes.

Above all, be true to yourself. You probably don’t want people to start thinking poorly of you. Your words, coupled with your actions, tell me what kind of person you truly are, through and through. Make sure that what I see is something you can be happy about.

Please try not to break me. I feel things very deeply and I can only handle so much rejection before I crack. You may not be perceptive enough to see the duct tape and super glue. I still believe that it’s there for anyone who takes the time to look for it.

PS- Yes, I have Autism. Yes, I know that impacts my perceptions and feelings. But, you don’t have to be Autistic to know that words hurt.

Unicorns

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Have the courage to say no. Have the courage to face the truth. Do the right thing because it’s right. These are the magic keys to living your life with integrity.~ W. Clement Stone

I am apparently a bully in the Autism community. I guess I didn’t understand that I’m not supposed to take “sides” or “support” anything but the name “Autism.” The idea of Autism as a disability is “safe.” Only upbeat and positive posts are “safe.” Isn’t that how the community got into this mess?

I posted a few weeks ago about “Vaguebooking” where people only talk about the very best parts of life. (https://oystersandlife.com/2014/09/08/vaguebooking/)  They don’t post about struggles, challenges or anything that **could** make them appear to be different. It’s like reading fairy tales all day long.

To be fair, not all the people on my friends list do this. But of the 30 or so people connected to the Autism community, only a handful post about anything but unicorns and rainbows. It’s okay if that’s what you want to post. Just don’t be angry with me for putting a damper on what you post.

Guess what? By only posting about unicorns and rainbows, people think you’ve got it all under control. That you, or your child, never struggle. That every therapy you’ve tried has been miraculous. That every diet adjustment made is a cure. It skews what people think about Autism. If you don’t live with Autism and all you read about are unicorns and rainbows, that must be what Autism is all about.

And then, tragedy hits. Again. The unicorn did a variation on what horses do. It got mad. It got ornery. But, it’s still a unicorn. Some people with unicorns can understand how someone tried to hurt their unicorn. They feel the unicorn is to blame for, well, acting like a unicorn. Others, in fact the vast majority, feel that hurting a unicorn is bad. Very, very bad. Don’t they know how precious and valuable unicorns are?

The reality is, unicorns poop. They mash the grass with their hoofs. They have to be fed special diets. They require grooming. And time, lots and lots of time. It’s hard work keeping a unicorn safe and happy. But we do. Many, many of us get up every day knowing how hard things are and yet, we keep our unicorns safe and warm and healthy and happy.

It never crossed my mind to kill my unicorns. Yes, they look different from horses. Yes, they act different from horses. But they’re my special unicorns. My gift of magic to cherish and take care of forever. Taking care of them is harder than taking care of a herd of horses. But the beauty I see when they’re around makes it all worth it.

So call me a bully. Label me wrong. Yell out Instigator! Because it’s true. I support self-advocacy. I support stricter legislation for caregivers who harm their disabled charges. I support boycotting an organization that tells people that Autism is a crisis. That Autism is a violent, daily struggle. That Autism must be cured.

I don’t want horses. Unicorns are awesome! If you were to take away their magic, unicorns would be just horses. You’ll work just as hard tending a horse as you will tending a unicorn. A horse means you’re just like everyone else. If that’s your goal, go for it. Try every diet, cure and therapy in hopes of taking away the magic. I choose to love and nurture my unicorns.

Because without a little magic, the world looks a lot dingier.

Label this

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Hi! Thanks for stopping by! Would you like something to drink? Tea? Coffee? Soda? How about a snack? Popcorn? Chips? Candy? Maybe something healthy like an apple? Oh, you’re on a diet. You only eat vegan. You don’t consume caffeine. Is that apple organic?

I find myself pausing at moments like these. You came here looking for something. I offered up options. You turned me down, questioned and judged me in a split second based on this exchange. I’m a caffeinated, junk food addict. Period.

Well, you’re right on some days. I do like my caffeine and I certainly like my popcorn and potato chips right next to my Snickers bar. But does that really mean I’m an addict? Did you just lump me in with a group of people who absolutely cannot live without “something?” That’s a heck of a label to put on someone who enjoys treats periodically.

The way you label people marks them forever. Yet, everyone does it. Got a speeding ticket? Insurance company now says you are a high risk driver. Don’t look like the body mass index chart says you should? You are obese. Wore the wrong clothes to work today? You are out of touch.

Do you feel judged yet? Because I do every day. I think through a decision a hundred times. I’ll read this post for the next few hours before I hit publish. I’ll make sure no one has the opportunity to see me as less than. My car is perfectly suburban. My house is mostly clean in case someone drops by. My social media posts are mostly vanilla. My clothes are neutral. It’s a lot of effort to go through just to avoid a label.

I’m sure someone will still look really hard to find a chink in my coat of neutrality. It’s no wonder over 50% of Americans have some type of mental health need. Between being judged and holding onto that superiority complex, we’re a collective mess. Since we **need** instant gratification, here’s your pill.

But, what if there is no pill? What if you are living with a chronic illness? What if you’re neurodiverse? Ahhhhhh!!!!! What should I do?

I know. I’ll educate others about the damage labels cause. I’ll write about how nouns were designed to give distinct meaning to objects. I’ll talk about the fact that the English language lends itself to labels so readily. And, just for fun, I’ll give you this link so you can understand how the English language is supposed to work  :http://en.wikipedia.org/wiki/Sentence_diagram.

A tree is a tree. A table is a table. A person is a person. Any descriptors are actually observations. It’s an apple tree, because it produces apples. It’s a dinner table because it seats four or more. . It’s a person because it looks like one. Stop.

That’s right. The correct label for me is person. Because that’s what I am. No more, no less. You can put all the adjectives you like under that diagramming line, but it doesn’t change the fact that I’m a person. Adjectives are judgments.  Artificially assigned tags that seek to clarify the noun. I don’t need clarification. Person will do just fine.