But… you’re so strong

“You’re so strong. You’ll get through this.”

I can’t count the number of times I have hard that. For the most part, I guess I am strong. I have my life together and I am emotionally stable. I am the rock that my friends lean on when they need help. I can see why people think I am “so strong.”

But sometimes, life happens.
It knocks the wind out of you and all the air is sucked out of the room.
You’re left feeling shaken, hurt, and unsteady. It’s hard to breathe.
It may even be hard to get out of bed.
When that happens, even “strong” people need help getting back up.
Unfortunately, instead of help, we’re often met with platitudes:

“It just takes time.”
“You’ll get through this.”
“You’re so strong.”

I am sure the people who say these things really believe they are helping. They see it as a compliment. They regurgitate a greeting card platitude and feel they have been of help. Done and dusted. In reality, what they are really doing is absolving themselves of actually helping.

What would help? Instead of “You’ll be fine”, try saying “It sounds like you’re really hurting. Do you want to talk about it?” Then listen. Put your phone down and REALLY listen.

Instead of “Time heals all wounds!!” try “I can see your pain is really raw right now. I’m sorry you’re going through this. What can I do to help you hurt a little less today?” And then do it.

People who know me would describe me as strong, but what they can’t see is that really, I am not. I’m “strong” because I have to be. No one is there to pick me up when I shatter, and I have learned this the hard way. I have to do it myself, but I don’t want to. My aspie brain makes me a great problem solver. Because of this, I’ve spent my entire life helping others and picking up the pieces for other people. It would be absolutely amazing to have someone do that for me. Someone who can anticipate what I need and meet that need without having to be asked. I’d love to have someone like me in my life.

Being a strong woman is hard enough. Being a strong Aspie woman is even harder. Those with Asperger’s already live in a neurotypical world that is pretty judgmental and mean to anyone who appears different. In order to be successful in this world, Aspies have to emulate neurotypical people and follow their social rules. Sometimes, it is just exhausting. The small talk. The noise. The constant smiling because everyone is happy! Happy! HAPPY!. The high-pitched voices and over-enthusiasm. The fake platitudes. It can be overwhelming at times. When you add a personal tragedy to that, it can be immobilizing.

So please – when your friends (Aspie or not) tell you they are hurting or if they share something they are truly struggling with, try not to dismiss their pain with a cliche – even if they are “strong.”

Being right is sometimes wrong.

As an Aspie, I struggle with facial blindness.  I sometimes cannot remember which faces belong to which names. I struggle to remember how I know you.  On social media, I have accumulated friends from all sources – work, neighbors, school, and even Aspie support groups.

While I struggle to remember most people, I can almost always remember which friends are my Aspie buddies on social media.

They are the ones who correct my spelling errors. “You left out an n.” 
They are the ones who point out my meme is not technically accurate.  “Actually, that didn’t happen in 1973. It was in the fall of 1972 that….”
They are the Grammar Nazis. I’d like that meme better if they used proper punctuation!
They are the friends who want to argue the point. And not just a little. They want to argue it into the ground.

I used to do these things too.  I practically couldn’t stop myself from doing it. A misspelled word?  I must correct you!  Lack of punctuation?  Let me educate you!  I’m sure you will find that meme less funny now that I’ve pointed out the grammatical errors!  Even now, there are a few hot button issues with me where I have a hard time holding my tongue.

It took a friend who was bluntly honest for me to learn this valuable lesson:  No one WANTS you to correct their spelling, grammar, or point out flaws in their memes unless they ASK for help editing.  It’s true.  (Shocking, I know!)  When we do those things, the rest of the world feels we are just being annoying.  We think we’re being helpful. We’re proud to show off our skills and intellect. But we’re not viewed as helpful. We’re viewed as a smug party-pooping know-it-all.

What can you do?  You have a few options:

1. IGNORE IT. Ignore the post and say nothing.  Take Thumper’s advice. If you can’t say something nice….               
2. EMBRACE THE SPIRIT – Let’s be real. Even with the grammatical errors and poor spelling, you know what the post was TRYING to say, right?  Embrace the spirit of the post instead of the errors.
3. HIDE IT. If it is bothering you, and you feel like you can’t let it go, you can always choose to hide certain posts.  I have had to do this myself.
4. WEIGH THE VALUE OF BEING RIGHT AGAINST THE VALUE OF YOUR FRIENDSHIP WITH THIS PERSON. This is especially true if you know that the person posting believes strongly in what they have shared.  Maybe they feel oranges are the best fruit and should be the ONLY fruit, but you’re a believer in strawberries.  Maybe they even wrongly believe oranges have magical powers that make you fly.  They share a meme badmouthing strawberries and claiming oranges are superior! Bwa ha ha ha!  Before you respond – are you going to convert this person? Are they really going to listen or are they going to cling to their belief that “oranges are the most bestest fruit ever because they make you fly!”  Obviously, you can see the error in their belief.  There are more than enough facts out there to tell you it is Pixie Dust, and not oranges that makes a person fly.  You could show them countless articles, fact sheets, and even a Disney movie to help them see the error of their ways.  They are wrong. SO WRONG.   BUT….If you know they feel strongly, and you aren’t likely to sway their opinion – then ask yourself which is more important:  being right or your friendship.  If your friendship is more valuable, than ignore or hide the post.  People are very sensitive about the things they believe strongly in. No one wants to have something they believe so strongly in disproved publicly on social media.  A debate between magical oranges and strawberries could end up costing your friendship. If you want to talk about their nonsensical belief in citrus – it’s better to do it in person and in a non-confrontational way.

Here are a few things you should NOT do:

1. EDIT THE MEME – Please do not take the original meme, alter it so it is correct and submit it as a comment. This usually hurts the original poster’s feelings and people perceive it as you being a show-off know-it-all.
2. DON’T BE PASSIVE-AGGRESSIVE – Do not write a post or share a meme on your own wall about misspelled memes or comments. Your friend will know it is about him/her and it will hurt their feelings. Also..if you’re a strawberry lover – don’t immediately post a pro-strawberry/anti-orange post right after your friend posts something about oranges. Again, people take their beliefs seriously and it could be seen as an attack. Remember how strongly you felt about their meme? They will feel the same about yours.
3. AGGRESSIVELY DISAGREE.  If you disagree with the message, don’t write several posts in a row linking webpages and urls to prove the original poster wrong.  It gives them no chance to respond.  It is viewed as an aggressive attack.  There are times when you can politely disagree on social media. Maybe it isn’t an issue your friend is passionate about, and it is just info she/he shared.  The info is incorrect.  The best approach is to ask questions.  “I’ve seen this meme shared before, but it is misleading. Would you like me to share an article about it?”  If you’re friend says “No” then ignore or hide the post.  If she says yes, then share the article.  Share one article/post at a time and give the original poster a chance to reply before posting more information.

LAST, but certainly NOT least… What if YOU are the one who is always having your posts corrected?

Ask yourself – is this only with certain types of posts (political, etc)?
Is it always the same person or people?

If it is, you can block them from posts that you feel will aggravate them.  You can create group lists for specific people (“Pro-Oranges” for example) and block them if you post anything about strawberries.
You can choose to  NOT post anything that you know others will find controversial.
You can unfriend those who cannot stop correcting you.
If that friend is another Aspie, just be aware he/she may not even realize that what they are doing is hurtful.

Most of the aspies I know love to be right.  Just remember, sometimes – always being right can sometimes be socially wrong.

Far away from where you are

I didn’t see it coming. I didn’t know it was there. I didn’t prepare myself for it, but here it is – hidden between two books: this picture of you.  Smiling your big, bright smile. One little tooth missing. Your sister’s arm around your shoulder as you wait to go into the skating rink. And for almost a second, I swear I can hear your laugh but then it’s gone. A fleeting memory quickly replaced by the crushing weight of your absence.  I can’t catch my breath. I can’t breathe because this picture, this two-dimensional flat reflection of you is all that we have left.  Reflections. Memories. And no reflection – no matter how beautiful can replace you.  I want it back. The sound of your laughter. Your beautiful face. All of it. I want her back so badly that my whole body just aches.

In Goodbye Small Fry, I blogged about my niece Vanessa’s death. As the one year anniversary of her passing approaches, I find it harder and harder to cope with my grief.  The anxiety overwhelms me at times and I can no longer stop the tears. I no longer want to.  There is something so upsetting about knowing she has been gone a year.  I feel like I am losing her all over again.  I am so thankful my nieces came to visit us that summer in 2013. So blessed that she took so many photographs.  Typical teen selfies then. Priceless memories now.

**Photo description: Niece Christina, Daughters Tori and Ali, and niece Vanessa **

Her pictures adorn my refrigerator, my walls, and my home. So many smiles. Fat baby cheeks. Giggling Toddler. Too-big two front teeth. Self-conscious pre-treen. Gorgeous teenager. So many photos of my nieces and my daughters growing up together.  So many memories, but still.. not enough memories.  I look at the pictures I’ve taken in the past year and they are so empty without her in them.  At her service, we cried and we laughed and we cried again.  I took this picture of her sister and my daughters.  When I had it printed, I realized that this was the first of a lifetime of photos without Vanessa in it and my heart just sank.

   
**Photo description Daughter Ali, Niece Christina, Daughter Tori.

People offer cliches: “She lives on in your heart!”  Yes. I know she does. We saw Guardians of the Galaxy and I thought “Vanessa would have LOVED this.”  Baby Groot?  Her friends called her Baby V and she loved Marvel.  We went to Universal Studios and saw so much Captain America memorabilia. I could almost see her big blue eyes light up.  I took a picture of a shirt just because I could see her wearing it with her Marvel shoes.  I do see her everywhere. I do. But it’s a ghost of a memory. I can’t hug her or text her or hear her voice. I can’t see her roll her eyes and say “Oh Aunt Sherri! Really?!”  I do have her in my heart. I do. But I would rather have her in my arms.  I can’t hug my heart.

When a loved one dies, employers give you three days off to grieve and attend the services.  Three days. As if I could fit a lifetime of grief into just three small days.  What about the rest of the time?  What about the days where I wake up and the loss is so profound that I have to remind myself to breathe?  What about the paralyzing sadness as her birthday approaches or the anniversary of her death draws near? Some days I just want October 1st to hurry up and get here so I can move past that horrible day. I want to wipe it off my calendar. I want to make it disappear.

Other days, I’m terrified that every day is one day closer to that awful date.  A year?  Has it really been a whole year without her? There are days when it feels like it has been years since I heard her voice, but most days I feel like she was just here.  As October 1st approaches, I feel like I’m back in that ICU waiting room.  Helpless. Seeing her there, but knowing she’s gone.  That’s how I feel when I see pictures of her now.  I see her in those pictures, almost always smiling that great big smile that lit up the room.  I see her in that moment so clearly – like she’s here – but she isn’t. She is so far away.  She is missing from me and there is nothing that can replace the Vanessa-shaped hole in my heart. ❤

“So far away from where you are
And standing underneath the stars
And I wish you were here

I miss the years that were erased
I miss the way the sunshine would light up your face
I miss all the little things
I never thought that they’d mean everything to me
Yeah, I miss you and I wish you were here”
~Lyrics from Lifehouse’s “From Where You Are”

**Photo description: TOP LEFT – A collage of pictures of Vanessa from her phone.  TOP RIGHT: Vanessa and my youngest son Jack. BOTTOM LEFT: Two blue-eyed, fun loving, fully crazy kiddos who should have had more time to realize just how very alike they are. ❤ BOTTOM RIGHT: A frosted blue window with the quote “I don’t know which pain is worse. The shock of what happened or the ache for what never will.”

Teen Aspies: Sometimes it’s better NOT to be yourself

“You’re really cute. Do you like sex? I like sex but I have not had any sex in six months. Would you like to be my girlfriend and have sex with me?”

This is an actual email I received from a male member of a co-ed Asperger’s Support Group on Facebook. My profile says married. I do not flirt online. When I do privately email a male aspie if they are in crisis, I always mention my husband and my family. I never imply that I am single or looking. This does not deter them.

Because Asperger’s is characterized by significant difficulties in social interaction,  I recognize that most of these guys are not trying to offend. They are truly trying to reach out to someone of the opposite sex in the only way they know how: an extremely straightforward way. I am not rude to them. I do not belittle them. I do remind them that “I am married, and this is not an appropriate way to approach a lady you are interested in dating. “ This often strikes up a conversation about HOW to appropriately approach a woman. But… I am a forty year old woman.

For the following story, I’m changing all the details. The town. The name, etc. A couple weeks ago, I joined an Asperger’s Support Group on facebook: https://www.facebook.com/groups/Aspergers2/

A young girl joined the group. She had an unusual hyphenated last name.  Little Jane Unusual-Name was using her real profile and her real name. She began to tell us that she was diagnosed with Asperger’s and she felt misunderstood by everyone. She then told us she was 13 years old. As a mom to four kids, this set my Mommy Alarm off at full volume. ** ALERT ** ALERT **

Young aspies tend to be especially trusting and vulnerable. I immediately wanted to protect this girl. I told Jane that she should be careful on the internet. She shouldn’t be disclosing her age using her real profile. She said her parents had warned her about the internet but her profile was ‘safe’. I explained that I am a mom with four kids and that I was concerned about her. I bet her I could tell her where she lived and where she went to school in less than five minutes. She agreed to the challenge.

She had no location listed. She had only 3 pictures of herself. In one of the pics, she was with 2 boys she had tagged. I went to their profiles and both were from Smallville, KS. In one of the girl’s pictures she was wearing a shirt that said SJH (Smallville Junior High, I presume). I googled her very unique name and it directed me to King’s Landing High School’s facebook page located in… Smallville, KS. Her profile did not allow private emails, so I posted to her in the group and said you live in S****e, KS and you go to KLHS. I posted it like that. I didn’t write out the town name.

She immediately BLOCKED me.

I posted to the group and asked someone to please ask this girl to stop using her real name and real profile in online groups with strangers. I used my secondary fb account and posted to her. I told her that if I could find her information – anyone could. Blocking me would not stop others from finding her if they wanted to. I advised her to set up an anonymous profile and not use real pictures of herself if she is looking for support in online groups.   The group administrator blocked me.   He said no one should be using a fake profile even though many of the members obviously do. No one is really named Aspie. I hope this young girl listened.  Predators aren’t always THIS easy to spot:

 

The problem with online Asperger’s support groups is that they aren’t screened. There truly is no way to know that every single person in the group truly has Asperger’s. Since there are so few services for adults, many “aspies” are self-proclaimed without an actual diagnosis. These groups often get trolls and other individuals who are just looking to antagonize or harass members. They are usually removed fairly quickly but they can do a bit of damage before they leave. Young aspie girls are especially at risk. The young, vulnerable aspie girl is a predator’s perfect victim because not only is she is so desperately reaching out, she is most likely very naïve as well. They may not recognize the warning signs of a predator, troll, or malicious person until it is too late. So please, young Aspies – when you go online for support – do as so many adults do:

• Create a separate profile.
• DON’T use your real picture. I can search for you by using your image just like they do on the MTV show CATFISH.  Use something that won’t identify you: your favorite TV character, cartoon character, peace symbol, etc.
• Don’t have a location listed on your profile.
• Don’t join ‘local’ groups with your anonymous profile. (Groups like “I love Smallville!”” could give away your location.)
• If you are solicited for sex, don’t reply. Replying to that person will send them an email with your profile name. Record their name somewhere. Tell someone. If they are a member of a group, you can forward their email to the group administrator and block them.
• Be sure to always report abusive content—whether it’s on your profile page, or someone else’s. You can also report inappropriate Pages. (Remember that reporting is confidential, so no one will know who made the report.)
• Be careful who you friend. That 19 yr old boy may really be a 39 year old man or 43 yr old woman. You really don’t know.
• Be cautious about the information you do share. It surprising how easy it can be to piece together information about you from the information you share.
• If you are sharing something about the way another person has treated you, don’t use their real name either. Saying “Gabriel Hobbes really made me mad today!” gives readers an opportunity to google Gabriel Hobbes and maybe even figure out who you are.
• Be aware that just because it says Asperger’s Support Group does not mean it is 100% SAFE! As I mentioned before: there is no screening. Even adult Aspies have had trolls and predators email them. The internet is NEVER safe.
• When you are new to a group, sometimes it is better to observe for a while. You will soon discover the members/admins who are very active and seem to be trusted by the group. Although the internet is never truly safe, these individuals would be the ones who are least likely to be trolls.
• Just because someone says they have Asperger’s doesn’t mean they do. I have met several individuals online who claim to have Asperger’s just to troll.
• Remember Asperger’s is a spectrum disorder. Not every Aspie you meet online is going to be like you.
• Finally: Please remember that NOTHING is ever private on the internet. Even in a ‘secret’ group. Anyone can take a screenshot of anything you say at any time and share it. Once you put it online, it is out there for anyone to share. Please be mindful.

I’m a slightly chubby, 40 yr old married woman. If I am getting solicitations on facebook, a pretty teenage girl will definitely be solicited. Please be careful.

Asperger’s, Autism, and Social Media: Sanctuary or Setback?

Facebook, Twitter, LinkedIn, online forums and other forms of social media allow people all over the world to connect. In the online Asperger’s support groups I belong to, members with a confirmed Autism/Asperger’s diagnosis and those who self-diagnose/suspect they may have Asperger’s are equally accepted. No “proof” is required for an Aspie group to embrace you. Because there are so few mental health professionals that care for adults on the spectrum, many adults search the internet looking for answers.  Social media has been a lifeline to many people with Asperger’s, but it can also stifle their personal growth.

 I’ll start with the positive. Here is how social media helps a person with Asperger’s:

It helps answer their questions about Asperger’s.  Many people with Asperger’s have felt alienated for most of their lives.  After realizing their quirks may be caused by Asperger’s, they go on a hunt for answers.  It’s not uncommon to see these types of questions in an online aspie support group:

• “When I eat, I eat each one of the foods on my plate completely before moving on to the next food. Is that just me or is it an Aspie thing?” 
• “People always think I look upset but that’s just my natural facial expression when my face is at rest.  Is that an Aspie thing?”
• “Does the sound of motorcycles make anyone else want to cover their ears? I have always HATED the sound of motorcycle engines.  Is that because of Asperger’s?

People ask all kinds of questions trying to determine which behaviors are governed by their own personality and which behaviors occur because of their Asperger’s. There are books and other types of media to help answer questions, but connecting with other people who have Asperger’s not only answers questions, it helps them feel less alone (especially when another members says “I do that too!”)

 Online communities allow Aspies to make friends – real friends – for maybe the first time in their lives without the stress of being socially correct.  Being online removes the stress of eye contact, correct posture, correct tone and appearance.  You can sit in your favorite ratty pajamas and make a friend without ever having to brush your hair or put on shoes.  Because the groups are Aspie support groups, there is already a commonality in the group: Asperger’s. No painful conversations trying to find some mutual connection. No internal dialogue about remembering eye contact or not standing with your arms crossed. There is safety behind the screen.

It allows us to have a dialogue with someone who thinks the same way we do.  When I talk with my friends who have Asperger’s, we have a different type of conversation. I can’t explain it exactly except to say we speak the same language. We’re straight-forward. We don’t get offended. Our conversations are logic-based, yet we laugh. We share. We know we don’t have to pussy-foot around conversation to make our point. There is a connection there that is amazing. It’s so nice to NOT have to explain your point of view because the person just gets it.

Unfortunately, the use of social media can also inhibit the social skills an Aspie needs to function in the real world because:

Support groups are designed to be supportive without being constructive.  Almost all of the support groups on social media are managed by other Aspies and not mental health professionals.  There is often no accountability for behavior.  You are simply allowed to be who you want to be as long as you aren’t intentionally attacking another person.  There is always someone to like your post.  It doesn’t matter what you do. If you’re a grown adult who likes to take pictures of her beanie baby dolls in different poses, someone tells you that you’re awesome! If you’re a grown adult who believes there is an alternate universe made up of fake Figgi humanoid characters and that for every human there is a Figgi, and you spend your entire day talking about the magical Figgis who live in Figgiworld, people tell you that you are awesome!!  They even encourage you! “How are the Figgis doing today?”  You can be as immature as you want to be and you are AWESOME!  It’s like one of those Barney episodes where the kids exude approval by constantly nodding “Yes” and smiling no matter what happens. It’s surreal.

These groups are fantasy worlds. In the real world, if a 35 yr old woman walked up to her coworkers to share pics of her beanie baby dolls in different poses, she would not hear that she is “Awesome!”  She would be told that childish things are for children. If a coworker started talking about humanoid creatures in an alternate reality that “really, really are real! and I love Figgi Bon Jovi!!” they would be ostracized and laughed at.  Because these behaviors are accepted and encouraged in social media groups, Aspies may not learn what is socially appropriate. 

Because they are not discouraged from hyper-focusing on their obsessions, they may not learn how to manage their obsessive thoughts. They may become even more confused when they do try to interact with people in the real world by behaving the same way they do in their online Aspie groups. In the Aspie groups, the behavior is rewarded positively with praise and compliments. In the real world they are chastised and excluded. They may not understand why they are not successful with interactions in real life and may choose to remain in an online support group world instead of interacting with the real world because the online group accepts them without asking them to adapt to the social norms of society.

When Aspies hide in the sanctuary of an online community that never asks them to push their boundaries, they may stop growing.  We learn by challenging ourselves. If an Aspie finds a safe sanctuary that allows them to play with toys, be as immature as they want to be, and never leave the safety of their bedroom and their pajamas, they may stop trying to interact with the world. This can be crippling.

Making online friends is wonderful. I have met some of my dearest friends through online groups, but in order for a person with Asperger’s to be successful in the real world, they have to learn how to socialize in person.  They have to learn that while it is normal for an Aspie to have some sort of obsession (dolls, trains, sci-fi), it is not considered “normal’ in the real world. Coworkers and friends will not want to hear yet another rousing tale of the difference between two types of trains even if you find it exhilarating.  Eye contact, although uncomfortable, is required.  When you constantly avoid eye contact, people believe you aren’t trustworthy.  There are other social cues – body language, tone, etc than can only be learned by interacting in the real world. It can’t be done by hiding behind a monitor.

With all things, moderation is key.  I believe it IS important to have a place to go where you have friends and are accepted, but I also think that we shouldn’t use that place to hide from the world.  To me, a true friend is a person who is completely honest. A true friend tells me I have lettuce in my teeth. A true friend lovingly tells me when I’m being too loud. A true friend reminds me that although my latest Leonard Nimoy/Star Trek bag is indeed “Fascinating”, I may not want to spend the next hour discussing Spock because our other friend wants to talk about her new baby.  A true friend helps me be a better me because she is truthful with me in a constructive way, and I would rather have that type of honesty than someone who just applauds my every action and tells me I’m “awesome!”.

Tired of all these Autism and ADHD brats!

When I was a kid they didn’t call it “Behavioral Disorders.”  They called it “Being a little brat!”  This is just ONE of many memes I have seen on my social networks. They are shared by my friends and family. I would like to think that is just the ignorant/uneducated who feel this way, but it isn’t.

Driving home from work a couple weeks ago, a college-educated peer told me that she felt that “most of these autism and adhd diagnoses” are fabricated.  Her son had some of the traits of a child with Autism/ADHD but HE doesn’t have Autism/ADHD so maybe it doesn’t really exist. She felt it was just an “excuse” for people NOT to parent. Did I mention she was COLLEGE EDUCATED?!?  She knew about my blog, my Asperger’s, and my beliefs, but since my thoughts are different from hers, of course mine MUST be wrong.  After all, it’s just years of science and research backing up my story. What is that compared to her personal experience with her own kids?

I call people who think this way The Dismissers. I get so frustrated when people make those sort of comparisons. Because their experience is “x” then yours must be “x” too. “I never wore a seat belt when I was a kid. I’m fine.” Thanks Professor Know-It-All. Was your car ever t-boned by a pickup truck? No?  Then I don’t think you’re fine because you didn’t wear a seat belt. You’re fine because you didn’t have an accident. Just like your child is fine because they DON’T have Autism or ADHD.  It is unfortunate that people think that way because a parent of a truly ADHD child would probably glady exchange your childs “similar traits” for their child’s full-blown ADHD.

Maybe you’ve met another type of ignorance: The Spanking Cures EVERYTHING Bunch.Their meme might say “I was spanked as a child. As a result I now have a psychological condition known as ‘respect for others’.”  Sorry to burst your balloon folks, but I had the fire spanked out of me on many, many, MANY occasions and you may be surprised to know that no matter how hard she tried, my mother could not spank the Autism out of me.

Instead of spanking respect into me, my logical brain processed it this way:

Spankings only served to remind me just how worthless I was. Even as a kid I knew you could get in trouble for hitting a dog, but not a kid.  Spanking reminded me of my lack of value.  It taught me fear. It taught me you could be a hypocrite as long as you were physically bigger.  It didn’t teach me love or respect.  I moved out at 17 and you want to know what really hurts when I look back at my childhood? I was a GOOD kid. No drinking. No smoking. No drugs. No sass. Still got whipped.  I finally decided “What’s the point in being good if you’re still going to get hit?” Hitting me had the opposite effect. Instead of curbing bad behavior, it encouraged it. If I was going to get hit -I might as well make it worth it. If being a little late meant I would be whipped, I might as well stay out until dawn.

While the Dismissers and the Spankers frustrate me, The Nelsons really frost my cookies.  These are adult bullies (like Nelson on the Simpsons) They think that bullying OTHER peoples’ kids is their right.

What’s even worse is that many people appear to agree. This past week I saw many  people on social media sharing the story about an adult man who was frustrated in Burger King. If you believe his story, the man was in line in front of a mother and her son.  His story claims that the boy was repeatedly screaming that he wanted some “F-ing Pie.” When it was his turn to order, the man decided he would buy all 23 pies so the child could not have one. The writer (who has removed his post) claims: “Moments later I hear the woman yelling, what do you mean you don’t have any pies left, who bought them all? I turn around and see the cashier pointing me out with the woman shooting me a death glare. I stand there and pull out a pie and slowly start eating eat as I stare back at her. She starts running towards me but can’t get to me because of other lineups in the food court. I turn and slowly walk away.”

There. Ha ha kid.

Lesson learned! Right? Almost all of the comments cheered for the ADULT man who bought all the pies to keep an obnoxious child from getting one. (As if Burger King couldn’t cook more pies.) I cannot understand that.  They are the biggest hypocrites of all. They believe they can change a child’s disrespectful behavior with their own poor behaviors.

EVERY TIME YOU SHARE ONE OF THESE MEMES:

• You dismiss true medical diagnoses.  Would you ever share a meme that described deaf people as “deaf & dumb”?  No! Of course you wouldn’t. Although that terminology was used historically, in today’s world it sounds derogatory and is offensive to the deaf community.  (Yes, I realize dumb used to mean mute and not a measure of their intelligence.)  I am sure kids with ADHD were often misdiagnosed as “just being brats.” We know now that they aren’t. Don’t perpetuate ignorance.
• You are saying that any child that is misbehaving just needs to be hit in order to behave. Although I would disgree with spanking for any child, it is especially damaging to children with Autism/ADHD/Mental disorders.
• You encourage grown adults to act malevolent and petty towards children.     You APPLAUD them for it. “You showed that kid!”
• You tell the world that bullying IS OK as long as it’s an adult doing it to a child.

Stop. Please.  With all the funny, rib-tickling memes out there on social media, surely you can share something else?
Share a time when you were feeling burnt out and just let the kids have frozen waffles for dinner.
Share a time when you were overly exhausted and let your child get away with behavior you normally wouldn’t because you just didn’t have the energy that day.

EVERY parent has had these moments of desperation.
EVERY child has made a mistake and acted poorly.
Don’t judge them based on a 30 second interaction.

I know… some of you are saying “But some kids ARE brats!”  Do you know the child? Can you honestly tell by looking at a child which one has ADHD or Autism?  Can you tell from the kids below?

Yeah. Me neither.  You would be surprised to learn which of these kiddos struggles with Asperger’s.   Is it the blonde haired boy with his sweet smile?  Surely that brown haired boy must be up to no good. He just looks like he wants to break something.  What about the little girl in pigtails. Is she cute or spoiled rotten?  And that teenager giving the camera a thumbs up?  Is she a good kid or is she slamming doors and screaming “I hate you!” to her parents?

It is so easy to project our experiences, our beliefs onto another person or situation.

For the record, between the two boys, the little blonde haired boy would be the kiddo most likely to break something.  He may look sweet and innocent here (and he is) but he has enough energy for three children. He can sneak a snack cake out of the kitchen in 2 seconds flat. He has to touch everything. He is my own personal Calvin from Calvin and Hobbes (my favorite comic).  If I don’t hear him, I need to go find him.  My brunette son was trying to give me a tough guy pose for this picture years ago.  He is my people-pleasing, “yes ma’am”, “no ma’am”, “please and thank you” kid. He was the designated “Kind Kid” ambassador at school and was assigned the task of showing new kids around.  He would give you his very last bite of food right off of his plate if he even thought you looked hungry.

As for the two girls. Well… the little one with the pig tails is an advanced reader. She’s a perfect little frog-loving, lizard catching tomboy. She loves everyone. She shares without being asked.  She is such an angel.  The teenager is also a good kid. A little withdrawn and addicted to Skype, but she helps take care of her siblings while her momma works. She cooks dinner. She is beautiful and has such a tender heart.  I don’t know what I would do without her.  Did I forget to mention – the two girls on the end are the same girl. The pictures are twelve years apart.

See how little we know by just a look?

If you want to share something today, share this.

An exercise in ignorance

The level of prejudice and ignorance that is alive and well today is heart-breaking to me, and I was reminded of its prevalence during a recent group activity.  When we began, we were not told the purpose of the exercise.  The forty of us were divided into two groups. Group A was directed to go outside for their instructions.  I remained inside with group B.

We were told: 
You are the “Peaceful River Dwellers.”  Your ancestors have lived in this community for thousands of years.  You have no poverty, no homelessness. Your children are well-educated. You have a high standard of living. You are a peaceful people living in a Utopian society.

We were told this about the other group: 
A group is coming that wants to infiltrate your community.  They do not think they way you do.  They do not act like you do. They will bring strife. They will bring viruses and disease you have not been exposed to. Do not make eye contact with them. Do not encourage them. Your group will be successful if you keep them out of your circle, out of your community.

We were then given time to discuss what our plan of action would be.  One woman moved to the front and immediately asserted herself as Leader without asking if she could lead.  She said we should keep them out at all costs because she is a mother and didn’t want them to bring illness to HER family! She asked what the group thought.  People said:

We should build a wall to keep them out!
We should do whatever it takes to keep them from getting in!
We could build a moat!
We could throw rocks at them!

Someone reminded the group that we are “peaceful” River Dwellers.

I stepped in and said, “Couldn’t we send an ambassador to talk to them to see why they have chosen OUR community?  Maybe they need water.”

Leader spoke up and disagreed.  “THOSE PEOPLE need to stay on their own side of the river!”  Another group member suggested allowing them to live on the other side of the river and sending them care packages from across the river.

A quiet woman spoke up and stated she was a Christian and because of her religion, she wouldn’t be able to turn them away. Another member asked her “What would you do if someone tried to break into your home?”  She replied “Shoot ’em with my gun!” and her voice was silenced.

I voiced my opinion more strongly. “This FEELS wrong.  This feels very 1950’s racist to me. You folks stay on your own side of the river. Don’t come to our side. Don’t drink from our water fountains. This feels WRONG. We need to talk to them to understand why they chose us.”

Leader reminded us the paper said we would be successful if we kept them out.  I persisted “But whose idea of success is that?  Is that OURS?”  Leader decided my idea was foolish because we need to protect our own. She took a vote to see who wanted to keep them out.  Everyone but me raised their hand. We were to stand in a circle, arms linked, staring at our feet when the group tried to infiltrate us.  My heart sank at the level of ignorance in the group. I could not believe these 20 adults were willing to just go along with one person without fully assessing the situation.  They were willing to do these actions without question because of a piece of paper.

Group B entered the room.  They approached our circle speaking kind words. They stroked our hair and told us we were “so beautiful.”  They asked if they could come in. They said they had a lot to offer our community.  They said they wanted to work with us.  They complimented us repeatedly and smiled the entire time.  Still, our group kept their heads down. When I tried talking to one of the people from Group B, my Leader told another member to “handle it” and I was reminded to keep my head down.  At that moment, a younger member of Group B had crawled through a gap in the circle on the other side of the circle and the “game” was over.

We sat back down in our chairs and the facilitators read our group descriptions out loud. 

Group B were called “The Explorers”  They were told:
You are a group of explorers. You never stay in one place for very long. You travel from community to community learning new knowledge and sharing the knowledge you have accumulated.  You are innovative and open to new ideas. 

You are approaching a community that is very set in their ways. They have been following the same traditions for years. They will not welcome outsiders in their community, but if they do not receive the innovations you have to share, their group will die out in the next 100 years.  Be pleasant and persistent. You will succeed if you are able to infiltrate their circle.”

We were surprised to hear how we had been described to the other group. Both descriptions were accurate, yet people allowed their personal prejudices to turn the words into more.  We were asked to discuss the exercise and the group facilitator went over to me immediately. “I know Sherri had some very strong opinions about this exercise.  Do you want to tell us about it?”

I did.  I told them I felt my group was being very prejudiced. I felt we learned nothing from our history of racism. My “Leader” was quick to judge the other group simply because they were “different” than our group.  The exercise affected me deeply.

Why am I discussing this on my blog about Asperger’s?  Because it is relevant here.  We are The Explorers in this exercise. We don’t think the way others do. Because of our obsessive thinking, we gather huge amounts of knowledge about specific subjects. We never fit in, so we are transient – moving from friend to friend, job to job. At each place we learn more about people and the way things work and we often want to share our knowledge with others only to be told “KEEP OUT! You’re DIFFERENT!”  We watch as the neurotypical crowd huddles closely together to keep us from infiltrating.  We try being kind. We try saying the things we think they want to hear only to be sent away. Usually we blame ourselves. 

This exercise has reinforced a belief I have internalized for a long time. I grew up believing that it was my fault that I was on the outside because I was the one who was different. As I have grown, I’ve learned that I am not responsible for the lack of tolerance and acceptance in others.

If you have Autism/Asperger’s, It is not you.
It is not US.
It is not.

I ask that you please read this out loud to yourself:
I am NOT failing because others won’t let me in.
It is their failure.
It is their ignorance.
It is their wrongful prejudice.
I am not responsible for their cruelty.

Promise me this: 
Promise me that from this day forward, you will never let another person’s intolerance and bigotry make you feel inferior. Ever.

I haven’t forgotten

I haven’t forgotten you.  I promise. 

I am currently in the process of working on my Statement of Purpose for the Master’s of Social Work Program.  Hang in there with me a little longer.  I have so much to say still. I just need the time to write it out.

With love,

Sherri (aka Pensive)

There is no such thing as an Autistic Adult

Autism only occurs in children.  Because it is a childhood disorder, as an autistic child leaves adolescence behind, the symptoms of their autism will gradually decrease and disappear. By the time the person is an adult, they will be completely Autism-free. They will have no need for speech or physical therapy. No need for mental health services. They will be fully functioning adults – ready to get a job, go to college and begin their new life without autism.

Of course this is ABSOLUTELY, 100% NOT TRUE, but this is something I am told every day by the media and organizations that claim to “support Autism.”

When I first suspected I had Asperger’s, I immediately began looking for more information about a diagnosis and support. A google search of Autism and Jacksonville, FL was hopeful. So many resources! CARD (Center for Autism and Related Disabilities). The HEAL (Healing Every Autistic Life) Foundation. Jacksonville School for Autism. The Learning Tree. There is even an annual Autism Symposium every year!! Surely I hit the Autism Support Jackpot, right?

Wrong.

The Autism Symposium was laughable. The folder they gave us talked about the speakers and their massive qualifications, but the packet contained nothing useful for a person WITH autism. When I asked the woman in charge if she knew of any resources for adults, she looked at me as if I had just asked if I could pull an alien out of my eyeball. She actually said “Did you Google it?”  *Sigh*. Thanks for that illuminating advice, princess.

Although this was an “Autism Symposium”, they didn’t list any kind of resources at all. The speakers spoke at a collegiate level about the genetic makeup and studies being done to identify the “autism gene.” They spent HOURS focusing on ‘what CAUSES Autism’ at the genetic level (eyeroll). Another “how can we cure ‘em” symposium. I didn’t care what *causes* Autism. I wanted to know what to do with it. I wanted to know more about it but not on a cellular level. The lights were too bright. The speakers were too loud.  For an “Autism” symposium, it was NOT sensory-friendly.  Every person at my table was disappointed with the lack of useful information given.

I kept trying.  I called the places from my Google search. Each place only works with children. Each place I called referred me to the next because they did not know of any services offered to adults. Referral after referral led me on a wild goose chase until the circle was complete. They were all referring me to each other – each apparently unaware of the services the other was offering. It was disappointing and disheartening.

I asked “What happens to kids after they turn 18?”

“They age out of the system.”

So… they DON’T need services anymore? They’re somehow amazingly cured?

No. They are just denied help.

They are denied help at a time in their life when they need help the most. At 18 yrs old, children are graduating high school and getting ready for college. They are transitioning from dependent to independent living for the first time in their lives. They might be going to college – away from friends, family, and their support system. I cannot think of a worse time to rip their mental health services away.

After failing to find an “autistic support organization” that helped Autistic adults, I tried psychologists. Even though I have very good insurance, I was once again told “We only work with CHILDREN with autism.” Or “We don’t accept insurance. You would have to pay out-of-pocket” (at the cost of at least $100 an hour.)

If I couldn’t get a psychologist to speak to me with my Blue Cross insurance, how will my autistic brothers and sisters get help? According to the US News and World Report, over 50% of people with autism are unemployed. FIFTY percent. They are most likely on disability. They probably have Medicaid for their health insurance. If psychologists aren’t taking Blue Cross, you know they aren’t taking Medicaid.

So what happens when Autistic kids turn into Autistic adults?

Nothing.
Absolutely nothing.
No support. No services. No autistic organization reaching out with social skills/employment skills.
Nothing.

What really chaps my hide is that so many of these kids are brilliant. They could flourish in college and excel in the real world if it weren’t for their social anxieties. Instead, they often can’t handle it. They feel much safer at home, surrounded by friends and family. They drop out. They remain dependent. They may end up on disability and Medicaid instead of learning the social skills they need to function in the working world. Instead of graduating college, our autistic young adult college drop-out is probably going to be on disability for the rest of his/her life (60 more years) because there were NO services to help him/her transition into independent living. At the rate of $721 per month, It would cost over $500,000 to pay disability for 60 years. Surely it wouldn’t cost 1/10 of that to provide mental health services.

I was lucky. I found another woman with Asperger’s who was a counselor.  Insurance was not accepted, so I had to pay the $40 a session out of pocket. Thankfully, I was able to afford it for a short while. She helped me understand how Asperger’s affects me and those around me. She pointed me in the right direction.  I learned most of what I know about Asperger’s through the internet from Google searches and online support groups. (Thank you Facebook.)

Unfortunately, online is NOT enough. Aspies struggle with interpersonal communication. Although it is EASIER to communicate from behind the monitor, it doesn’t teach us the skills necessary to speak to others in person. It doesn’t teach customer service. It doesn’t help us with the dreaded eye contact. It doesn’t teach us to function in the real world.

We need more.

Autistic kids grow up to be autistic adults and we are failing them.

So what am I doing about it?

I have emailed ASAN (Autistic Self Advocacy Network) to start a chapter here in North Florida.

I am going back to school this fall as soon as I figure out which degree would help me reach my goal of being able to provide counseling to other autistic individuals: A Master’s in Social Work or a Master’s in Psychology. I already have my Bachelor’s in Nursing.  I’m doing my research on this now.

What about you?  🙂

Dear “Autism Parents”,

What many of those without autism fail to realize. Excellent points by an amazing blogger.

Just Stimming...

I want to clear a couple of things up.

1.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like

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