To Every Season

A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones
A time to gather stones together~ Turn, Turn, Turn, The Byrds

I follow a number of bloggers, many writing about Autism. Several have young children and over the last 5-6 years I’ve read their posts about their kiddos growing up and doing things they never expected. I’ve lost count of the number of times I have wanted to reach into my computer, pat those parents on the shoulder and tell them it will all work out.

I know it’s human nature to not take advice. I’m human, really. I don’t always listen. I have learned that other people have been through what I’m now dealing with in my life. I read their social media. I’d bet most of them don’t even know I’m stalking them; snatching up every crumb of information I can as I struggle with new problems.

I wish I could tell these parents of Autistic kids that it will all work out. Do not confuse that with “it will all be okay” because it won’t. Okay is a term people use like a consolation prize. Every one of us has to grow and change at our own pace to become the best people we can. Things may not always turn out the way we want, but each experience provides opportunities to see the world differently. To accept that different is not less. To embrace change all around us as a good thing instead of a moment of sheer panic.

I wish someone would tell me it will all work out. I wish I had a shoulder to turn to when the scary things run through my mind. So I understand not saying things out loud as a protective measure. But at the same time, I wish I could throw a pity party that other people would come to and pat me on the shoulder.

Many paths to our destinations. None are inherently wrong. Some are tougher than others. Sometimes we need a push to get moving. In the end, we will all end up just where we are meant to be.

Deficits

DEFICIT

(1) :  deficiency in amount or quality <a deficit in rainfall>
(2) :  a lack or impairment in a functional capacity <cognitive deficits> <a hearing deficit>
 (3) :  disadvantage <scored two runs to overcome a 2–1 deficit>

 

The Autism diagnosis is based on deficit, or lack, of certain skill. The focus is immediately on what cannot be seen or done. I’ve written several time on “less than” as the way society sees people with disabilities. Is it no surprise that the perception becomes reality when even those diagnosing the disorder start from a place where “lacking” is the basis for diagnosis?

I’ll tell you that I have certain skills that are not as strong as they could be. I have a very strong sense of right and wrong, which leads to heated arguments on a regular basis. I do sense grey areas, but frequently disregard grey for black and white. I am perceived as socially adept, although the reality is I am fascinated by behavior and am constantly watching people so I know how to respond. I have high anxiety around “normal” parts of life because I don’t understand how something will work out. Basically, I’m a tangle of social issues, which just so happens to be the basis of my diagnosis.

I’m not a savant in any area. I am verbal and able to communicate, unless I’m confused. Then my words don’t make sense and frustrate everyone including me. I’m educated, having attended college and pursued advanced degrees. I’m a professional. I hold a job. Fortunately, my job doesn’t demand that I interact with adults so much. I’m just not cut out for the games and machinations that seem to plague many workplaces.

I am a daughter, wife, mother and sister. I’m a mentor, a teacher and a coach. I am an active member of my community. I don’t sit behind my computer and watch the world go by. Well, most of the time at least.

We all have deficiencies. Some just come with a label. Some are labels slapped on us by society. Some we accept ourselves. If you look closely at your life, you may just find some areas where you come up short.

Are you deficient? Probably so.

Familiarity Breeds Contempt

It’s an old saying that dates back to the early 14th century. I figure if something has persisted that long, there is probably a kernel of truth buried in the verbiage. People probably felt this way for centuries prior to putting the words on paper.

In short, knowing someone/ something too well leads you to disdain of said person or thing. It’s not just disdain, it’s stronger…bordering on intense dislike. I go through cycles with my life and activities that almost always end up at this point. It’s nothing personal. I used to think it was boredom on my behalf, but it feels like more than that.

For example…my medical doctors. A few months back, things seems to be stabilizing. We got into a groove in our relationship that I felt was actually a good thing. Then, an issue arose. I saw things one way, the docs saw it another. Because we had slipped into this comfortable rut, we’ve ended up not liking each other very much when opinions differ. I am on the short end of this particular stick since the docs are the gatekeepers. I hold just a bit (snort) of contemptuous feelings for the group right now. It’s only a matter of time until the issue gets sorted out on its own. It will be interesting to see which way the cookie crumbles in this case.

I also feel this way about one of my jobs. It’s been getting increasingly awkward for a week now, with my supervisor not catching on that there are boundaries being crossed. They’re not red flag boundaries, just some of my personal ones. Yes, yes….I could say something straightforward and hope it changes the work relationship. Instead, I’ve used sarcasm. Note, the supervisor in question is taking my sarcasm as humor instead of the warnings I intend. Today, the supervisor crossed the boundary. It’s small to those who don’t know me. Again, not a red flag boundary. Rather, it’s one where I can see an outcome that is very likely and the supervisor is choosing to open a can of worms instead. Yes, I should just say something. I just don’t feel like it’s my place.

Thus, contempt. I know too much at this point. I know my supervisor’s skills and abilities very well. I know my supervisor’s strengths and weaknesses. I know how my supervisor responds to situations. Unfortunately, part of what I do internally is watch people and file away information about them. I can’t help it. It is part of how I cope with people. Patterns of behavior are comforting for me to understand. I can deal with shifts in behavior much easier when I understand where the behavior stems from.

So, I left. I just decided it was better to leave instead of expressing my thoughts. I’m fairly certain the supervisor would have figure out I did not respect the decisions that were made. Fight or flight and I chose flight. Maybe a day or two away will allow me to reenergize and prepare to deal with this situation.

How many times have you walked away and not said anything? Is this a luxury I have because of the terms of my employment? Would I do the same thing in a different work environment? Well, the answer to the last one is yes as I have done this as recently as six months ago.

I’d say this was an Autism piece of me. Seeing patterns and mentally arranging them is something I’ve done for years. Losing patience when people can’t see “my” patterns is also something I’ve done for as long as I remember. Feeling contempt is, unfortunately, not new either. It’s not a “superiority” thing. It feels more like watching one of those videos where someone is doing something you know is not smart. You can see they are going to have a spectacular wipeout. You just know. And then when they do, you laugh anyway.

 

Courage

That one word evokes some strong feelings. It makes us think about things. While most people don’t consider it a judgment, they use the word to judge others. Questions like “Exactly how is that courageous?” have people second guessing themselves.

I think about the people in my life. Courage is parents sitting beside their daughter who was in a head on collision with a semi-truck, not knowing what each day will bring. Courage can be found amongst my friends living with rare, disabling diseases including gastroparesis and Ehler-Danlos Syndrome. Courage is walking out of a doctor’s office and facing the world even though you’ve been dealt another blow.

Courage is with those taking one minute of life at a time as the learn to live with mental illness. For too long, society has hidden how much courage it takes to keep moving forward when every fiber of your being is screaming “enough!” Courage is talking about your own mental illness so you can help others. Courage is standing with those who are living with mental illness and supporting their journey. https://hpwritesblogs.wordpress.com/2015/06/18/www-thesemicolonproject-com/

Courage is being there for the youth in your life. It is 3AM wake up calls because a diabetic monitor went off. It is taking in a  youth who needs guidance, yet is unable to turn anywhere but to you. Courage is raising a child to see that they are priceless, even when others have written them off. Courage is accepting that different is not less. Courage is biting back the tears as your child is bullied yet again. Courage is building a helping village, brick by brick, knowing that not everyone will understand.

Courage is picking yourself up after being knocked over. It is seeing your own value and not allowing others to take that from you. Courage is continuing to improve yourself, even when you feel like you are as good as you can possibly get. Courage is recognizing that change is part of growth, no matter how painful.

Courage is helping your fellow humans reach their potential. It is being sensitive to the fact that different is not less. It is understanding that words hurt and should be used with care. Courage is being willing to help instead of shying away. Courage is compassion.

Let courage take root in your life. See the possibilities of being courageous. Consider all that you personally are living with and recognize that others have things going on in their lives to. Reach out. Be courageous and step out of your comfort zone. I think you will be amazed at what you discover.

Annoyed

In the past few days, a few things have happened that I find annoying. Most of these things are stuff that almost everyone is guilty of doing at some point. Others are things that are more specific to my personal pet peeves. Either way, here they are….

Children are not an excuse to use the handicapped restroom stall. That’s why most places have family restrooms. Take the time to find them.

Changing your baby’s diaper at the restaurant table is just gross. No further explanation.

Encouraging your child to approach me and ask to pet my service dog, who has a big patch that says do not pet clearly visible, is rude. And stupid.

Not all disabilities are visible. Nor do they need to be. Mind your own business.

Autistic does not mean stupid.

Autistic does not mean I don’t care.

Autistic does not mean I lack feelings or emotions.

Taking credit for someone else’s work is plagiarism.

Stepping on other people so you can be seen as #1 is childish, rude and uncalled for.

Assuming you know “all about” something because you read about it on the Internet makes you look silly.

Claiming you are something you are not makes you look silly.

Talking about something you have very little knowledge about is annoying, especially when the person you are talking to knows much more about the topic.

You can never have too much bacon.

It is better to ask questions than to ass-u-me.

Respect for diversity goes a long way.

We don’t have to agree. We do need to respect each other.

Every person has something to contribute. Never underestimate another person.

Remember, the “m” in masses is sometimes silent.

I prefer rainbows over blue lights any day of the week. Ask me why.

I am not “broken.” I do not need to be fixed or cured.

Blindly throwing money at things solves nothing. Do your research.

Ask. Respectfully. You’ll be amazed at what you learn.

You didn’t get to where you are in life without help from others.

There is no shame in ask for or needing help.

georgebernardshaw109542

 

 

 

Um, congrats?

Life is not fair. We should all know that by now. There is no way it can be given our different perspectives. What seems fair to me may seem patently unfair to you. Without going into the whole socio-economic debate, life is just not fair.

But how do we determine “not fair” versus “discrimination” in today’s world?

I’m physically disabled. Is it “not fair” that non-disabled people use the stall intended for disabled people? I’d say yes. I would happily pass every single thing wrong with me to an individual who wants that stall. I don’t considering children to be a disability. Use the family restroom please. I also don’t consider luggage or packages to be disabilities. They don’t get their own seat on public transportation or qualify someone as needing the extra space in a stall.

I’m Autistic. So are two of my children. Is it “not fair” or “discrimination” that we face daily as we navigate a world that some feel we don’t belong in? Both, from my perspective. The “not fair” part consists of stares, disparaging remarks, being left out and flat-out bullying. It would be great if these things magically went away. However, because we’re all different and we perceive things differently, they never will.

The “discrimination” part comes into play when non-Autistic people insist on denying Autistics a voice in the discussions about Autism. When parents pour bleach into their children’s bodies to “cure” them of Autism. When our communities fail to work with us to develop supports so we can be active participants. When our co-workers treat us differently because we wear the same style clothes all the time (itchy tags!) or have responses that aren’t what is expected. This is discrimination. This is determining that because of a different way of looking at the world, we are less than deserving.

I am not less than deserving. I am not “taking” anything away from anyone else just by thinking differently or needing some extra space in a stall. I am not in need of fixing, although I’m happy to try to learn more tools to cope with a world that is overwhelmingly intolerant of differences. I will keep trying to help people understand that different is good. If we were all the same, the world would be a very boring place.

Congratulations to those who feel the word is fair and just. That must feel pretty darn good. For the rest of us, we will continue to speak up. Louder and even louder so our voices can be heard over the din of those who would silence us.

 

Rainbow

I will not light it up blue.

I do not support Autism Speaks in any of its forms. I do support Color the World, since each one of us is unique and individual as the colors we see. I also tacitly support Light it up Gold and Light it up Red. Light it up Gold is for the hearts of gold many autistics display. Light it up Red is directly countering light it up blue as red is perceived as the primary opposite of blue.

 

This was written by my daughter. Please take the time to read and educate yourself before you buy into propaganda. You can find the original at

https://www.facebook.com/notes/thoughts-from-a-female-aspie/views-of-the-page-admin-on-autism-speaks/288620804633865

This is a basic list of things to look into with Autism Speaks:

Per DSM-V, I am autistic (even though I disagree with DSM-V). I do not support this organization at all. I do support educating individuals who believe that I should be cured, and about organizations that they choose to support.

 

Other links to look at (some repeats):

 

 

 

 

Divergent

I feel that Veronica Roth’s books are filled with allegory. I’m certain the social justice message is intended. But what if you frame the factions around the context of Autism?

Abnegation….others before self. How many Autistics let others dictate their needs? Where does self-care rank for a person who is desperately trying to fit in? For me, it used to be pretty far down the list. I’ve learned how to tell people no in recent years, although that can be very stressful too.

Erudite…knowledge seeking. Yep, I have a lot of knowledge. Mainly because I become absorbed in ideas and my mind takes off with the possibilities. I’ll track an idea down to its origins if it interests me enough.

Candor…the truth shall set you free. Unless you speak too loudly. People say they want the truth, but when you speak what you believe no one listens. Being candid can sometimes (most times) end badly.

Amity…kumbaya! Wouldn’t it be fabulous if we all got along and accepted each other? I know I’d be less stressed and more care free if I didn’t have to worry about what other people thought of me.

And Dauntless….the hero in us all. Willing to lay it all down and show what you can do. Protectors of society. Keepers of independence. My wild side.

Divergent. All five factions in one. Outcast. A threat to the norms. Must be cured, yet holds the key to the future. Hunted. Shamed. Cast-off.

Divergent. Maybe that’s a word people could understand to describe Autism. Forget the puzzle piece. Let’s be Divergent. Recognize that the uniqueness is worth fighting for. The Divergent are not less than. They are different. Imagine if the Divergent in the series had been killed off. While some turmoil would have been avoided, secrets would have remained locked away. Most of the turmoil was caused by factions that felt threatened. People were raised to believe the Divergent were inherently bad. Sound familiar?

I don’t believe I’m inherently bad. I’m different. I’m difficult to understand. I don’t fit in a tidy box. I speak too loudly sometimes and people get uncomfortable. I know “too much” which makes “experts”  very uncomfortable. I’m challenged every day to stand up for myself. People judge me based upon a label. I have to be strong enough to stand by what I believe.

Divergent has a nice ring to it.

Diagnosis

Human beings by nature look to categorize things to make them more understandable. We put things in mental boxes so the world makes sense. Think about your interactions from today. I know I put people and things into little boxes.

But what happens when people don’t fit into boxes? It’s more common than you think. Maybe they don’t fit because of social norms. Or because the person dresses differently than one would expect. Perhaps their personality isn’t what you think it should be.

Note, these are all very personal perceptions. You choose how you arrange your boxes as well as who you place in them. My boxes won’t ever look like someone else’s. Sure, there is some overlap. After all, we’ve been boxing things up for thousands of years There’s bound to be some commonalities that are obvious.

My problem is I don’t fit in any number of boxes. I’m Autistic, which confuses many people because while I may be a bit “cold,” I’m still very functional. I have multiple illnesses that feed off each other, making true identities of the disease processes elusive. The treatment for one disease may very well set off another. My doctors, trained to put me in a box, struggle mightily with my health.

The worst part of this is sometimes we misplace things. we fill in blanks with our personal experiences rather than looking a bit deeper to figure out why someone is different. We pass judgment without all the facts. And, we rarely revisit the situation and revise our opinions.

Such is human nature. I have yet to meet a “perfect” person. We all have flaws, some more visible than others. When we insist on making people fit in boxes, we kill off some of that person’s essence. By denying our differences, we shortchange ourselves. Narrow definitions deprive us of rich experiences.

Your challenge: Open your mind to the idea that boxes can’t contain everything. Try to learn more about a person before you pass judgment and crate that individual up. You just might learn where some of your own biases and blind spots exist.

I care too much

Empathy: noun

1. the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

2. the imaginative ascribing to an object, as a natural object or work of art, feelings or attitudes present in oneself

 

You may have heard that Autistics don’t care about others. That we are unable to reciprocate feelings or provide visible signs of caring. I have to tell you…that is just not true. Sometimes you have to look a bit deeper to see these feelings, but I assure you they are present.

They are present in a smile, a hug or a hand grasped in your own. Words do not necessarily indicate emotions. Non verbal communication plays a larger role in conveying feelings than most people think. While people accept smiles and giggles from babies as signs of contentment, they seem to think that older people have to “tell” their emotions for those emotions to be valid.

It’s just not true. There are two reasons I’d like to share with you. First, words can be misused or misunderstood. Some words are just patterns we all repeat, like “have a good day.” Meaningless chatter that works as social grease. The multiple meanings of words in addition to the varying interpretations of intensity lead to misunderstandings. I love sunny days, but not the same way I love people in my life.

The second reason is that  I empathize with many people. I feel their pain as if it were my own. I recognize younger versions of myself in the students I teach. I can see where others have made mistakes that I made in the past. If I verbalize any of these feelings, they are usually misinterpreted. I just can’t seem to match my emotions to my words.

So, gestures. A hug. A smile. A hand shake. Doing something for someone. These are rarely misunderstood. There’s an almost universal language of unspoken feelings that most people “get.” This is a good thing for me. My words fail me so often that I wonder exactly how people perceive me.

Please don’t mistake my awkwardness for unwillingness. Understand that while I am fairly adept in social situations, I’m constantly stressed by them. I’m thinking 10 steps ahead, running through the scenarios and hoping I’ve picked the right response. I notice your body language and try to follow that “conversation” as well. When the two “conversations” don’t match, I try to figure out which one I should follow.

Yes, I care too much. At the end of most days, I feel I’ve failed. I feel I could have done something differently that would have made someone’s day better. I could have been more helpful. I could have been more kind. Yes, I beat myself up over these interactions that many of you probably don’t even give a second thought to. It’s cool. Just understand that my hesitation to join in is probably based out of fear of failure, not because I don’t want to join, but because I’m scared to death of that chasm of misunderstanding that looms right in front of my feet.