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!”.

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?  🙂

I’m jealous of your Asperger’s

I’ve met a lot of different people with Autism and Asperger’s and sometimes I get a little jealous. Maybe I shouldn’t admit it out loud, but I don’t know where else to say this.  I guess I’m jealous.

I go online and talk with other adult Aspies,  Many of them don’t work.  They live at home with their parents. They spend their days focusing on their special interests. They are online as often as they want to be.  They don’t have to get up early. They sleep in. They set their activities to their own circadian rhythm. The collect their shiny things. They flap their hands/stim when they need to. They are basically free. Free to be themselves.

I realize not all Aspies have supportive families, but many of them do.  Their parents are accepting and supportive of their disability. They have been sheltered. Their home is a safe place. The only downside is having to follow the rules their parents establish, but hey.. it is their parents’ house. Sometimes I get a little bit jealous of all that.  I never had that.

Although my mother was never officially diagnosed, I am quite certain she was bipolar (manic/depressive) at the very least. My mother had two moods: Angry and Sad. Occasionally, on the very, very rare occasion she was happy. But she was never just comfortable. She was never content. My childhood was very turbulent and maybe some day I’ll find the strength to write all about it. For now, just for now, I’ll give you a few small details.

**Photo Description: Me and my Mother **

My mother was a very emotionally unstable person. She had only an eighth grade education, and not a very good one at that.  Her lack of education made her very defensive. She believed there were only two sides to everything. Her side and the wrong side.  If you disagreed with her, you were on the wrong side.  The wrong side brought her wrath – physical and emotional abuse.  I spent my childhood tip-toeing on eggshells.  Although the adage is a joke, in my house, it rang true: “If momma ain’t happy, Ain’t nobody happy.”

My mother had no friends, so I was expected to be her best friend and agree with her no matter what. To side with her always. To be her champion. To defend her even if she was wrong.  For any child this would be difficult. For a child with Asperger’s it was even more difficult.  I was torn between my desire to avoid my mother’s wrath and my strong Aspie compass telling me to always defend what is right no matter who was wrong. Stimming behavior – flapping hands, etc was not allowed. I pulled at the skin of my lip. I still do today. It was the only thing she couldn’t stop me from doing.

I was never allowed to recede to my room and disappear. I wasn’t allowed to meltdown ever. A meltdown would have brought on more physical and mental abuse. “Why are you crying? Do you want me to GIVE you something to cry about?!?!”  I learned quickly to keep my feelings inside. My mother’s love was always conditional. She only loved you when you were doing something nice for her. This behavior taught me to be codependent from an early age and believe my self-worth was based upon my actions. I felt unlovable unless I was doing something to deserve love. The sense of worthlessness she instilled in me took many, many years to overcome. Like many abusers, each violent outburst was followed by gifts.Toys.Things. Because THINGS equaled love. Deeds equaled love. Yes, she had hit me, but she had BOUGHT me these toys to SHOW how much she loved me. And you could not reject those gifts or you were rejecting her. They were meant to be displayed and exalted. It was an emotional roller coaster.  It was exhausting to be her daughter.
**Picture descrition: Me with my shelf full of toys. Mon chi-chi’s, Benji dog, Mickey mouse, etc. All to show how much I was “loved.”

I felt trapped growing up. I felt like I was never allowed to be myself.  Because my mother’s moods were so volatile, there was never a way to predict how she would react. For a child with Asperger’s, this is the equivalent to living in hell. We need routine. We are black and white thinkers. We need cause and effect. These things help us feel like things are under control. In my house, the same action did not always bring the same reaction. Having a mother who throws dishes at your head if you forgot to clean out your cereal bowl yet doesn’t bat an eye if you intentionally misbehave makes life extremely unpredictable. I never knew what to expect. Never knew how she would react. Never wanted to go home. Anxious isn’t a big enough word to describe the anxiety I grew up with. I felt caged. Trapped. Pacing back and forth in my too-small container unable to break free.

I had my first job when I was 15 and had my first apartment at 17. I am sure I did terrible at my first job. I know I was terrible at managing my first apartment. I left home to escape her. To escape her cruelty. To escape her emotional demands. To escape that house.  Without meaning to, without realizing it, my mother forced me to learn the skills I have used to survive in the non-autistic world. I had to get a job to get money to leave home.  I had to get out.

So when I moved out, there simply wasn’t an option to return home. I had to learn how to get a job and KEEP it. I had to learn to survive on my own. I am not saying my parents never helped me. My parents loaned me money. My father helped me on many occasions. I would be lying if I said I did it all on my own completely. But I never wanted to go back. Home was not a safe comfortable place for me. There was no one to wrap their arms around me and tell me it was ok that the world was so rough and that I could try again tomorrow. That was a fantasy. A Disney movie. That wasn’t my life.

So I’m a little jealous when I see these grown adults with Asperger’s that still live at home. They have supportive parents who hug them and love them and tell them “everything is going to be OK.” Their parents tell them they are perfect just the way they are. They don’t have to change for the world. Their parents don’t force them to ever take a step outside of their comfort zone. Their home is their sanctuary. They don’t have to pretend to be something they’re not to survive.  I see that as a sort of freedom I never had.

The freedom to feel safe with my own family.
To feel loved unconditionally.
And I’m a little jealous.

But it’s a little catch-22 for me.  While I have some jealously towards those who live the life I never had, for the first time in my life, I feel some gratitude towards my mother who didn’t baby me, didn’t coddle me, and didn’t allow me the option to fail. Because her actions pushed me out of the nest so forcefully, I had to learn to fly. And I did.  I wonder if I would have learned the skills that I have now if failure had been an option. If I had been allowed to retreat to my room and hide under the covers, would I have ever pushed myself?  If I knew in my heart that I could always go home and home was a safe, fuzzy place, would I have succeeded? If my parents had sheltered me from every failure because I was different, would I have tried as hard as I did? Would I be the person I am today? College educated? Married? With children? With two jobs?  Or would I still be living at home, single, free to flap my hands and fidget with my shiny things and have my meltdowns. Free to be exactly who I am all of the time.  I’m not sure. I’m just not sure.  And then I wonder…which one of those things really is free?

When Logic Fails: Asperger’s and Grief (part two of two)

How does a person with Asperger’s process death? Do we experience grief the same way that neuro-typical people do?  These were my questions as I struggled to understand my personal grief when my niece died last October.  In my last blog, Goodbye Small Fry, I talked about the death of my niece Vanessa.  I shared the story of her loss so you could see what a profound loss it was.  I wanted you to understand that it wasn’t a small loss to me. It was a deep, searing loss.  My life is filled with memories of my nieces and my daughters together.  I lost a piece of myself when she died.

After her death, I felt like my grief was somehow different than the rest of my family. Like a typical Aspie, I tried to research it.  I googled Asperger’s and grief. I found almost nothing pertaining to ADULT grief.  There were a few scattered articles on explaining death to your aspie child.  I reached out to my Aspie community.  Those who had experienced a loss were very supportive, but many of those who did not have a similar experience could not relate.  They wanted to, but without any personal experience, it was difficult for them. I did not get upset. I understand all too well how it feels to not be able to ‘be there’ because you cannot understand – no matter how bad you want to.

When I removed “Asperger’s” from my Google search and just searched for grief and death, I saw an immediate pattern.  Most of the results talked about Elisabeth Kübler-Ross’s five stages of mourning and grief.  According to the web, these stages are universal: experienced by all people everywhere in the world. They can be experienced in any order and with varying levels of intensity. People grieving can go back and forth between stages as they work through them. Acceptance, the final stage, can take years to reach and some people may never reach it.   Here are the five stages of grief:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

It is said that one must experience all five of these stages in order to feel more peaceful about the loss they have experienced.

I can only speak from my own experience, but as a person with Asperger’s, I disagree.

As heartbroken as I was, I did not feel I experienced grief the same way as my neurotypical family members did. While my family members struggled with the first four stages of grief,  I only struggled with one.

I had no denial.  My niece’s sudden aneurysm left her brain dead. Connected to a respirator and different monitors, she appeared to be sleeping. The respirator made her lungs expand and collapse – it gave the impression she was breathing.  Even though a piece of my heart wanted to believe that she was still “in there”, my brain knew she was gone.  It would not allow my heart to fantasize that some day she might come back to us.  She was gone. It was logical.  There was no denying it.

I did not experience anger either.  I watched as others felt angry at varying things, but I could not feel anger. Angry at what?  There was nothing to be angry at.  No one would have ever thought “aneurysm” in an otherwise healthy sixteen year old girl. To me, there was nothing/no one to be angry with.

I watched her mother and father bargaining.  I listened to the “if only” statements.  “If only we had..” “If only she had…” I could not feel the need to bargain because my logical brain understands we CANNOT go back in time. There is no do-over. There is nothing we could have done and there is nothing we can do now that will ever bring her back to us. There are no bargains to be made.  All the “What ifs” in the world cannot change where we are now.

Depression, however, hit me like a brick wall. Overwhelming sadness consumed me.  I felt immobilized by my sadness. Immobilized and confused.   I cried for my niece. For the loss of her. For the loss of all of the things she will never do. For the future she will never have. For the memories she will never make.  My heart broke for her.

I felt like every ounce of my energy was poured into processing the depression I was feeling.  I am not in any way minimizing my family’s grief, but at times I wished I could feel denial, bargaining,  or anger – anything but this crushing depression and sadness.  In my head I imagined we were all given a “pitcher” of grief.  Where they had four glasses to pour their grief into, I only had the one and I couldn’t stop it from overflowing.

For individuals with Asperger’s, I believe there is another facet of grief that we feel.  A facet that maybe only we are capable of feeling – Internal Conflict.  Aspies are logic based.  In almost all instances in our lives, logic automatically overrides emotion.  The brain prevails over the heart almost every time and the heart stays quiet.  (I realize the “heart” doesn’t actually control our emotions, but for the rest of this blog, I am going to refer to the part of the brain that controls emotions as the heart.)

As I was trying to process the loss of my niece, I realized that for the first time in my life, my logical brain and my emotional heart were at war with each other.  I could not function.  Logic failed me here. 

My heart wept. It did not try to reason. It just hurt.  I felt like there was an elephant sitting on my chest. I couldn’t breathe. I didn’t want to move. Everything was a reminder that she was gone and that fact was too much for my heart to bear.

My brain, on the other hand,  argued non-stop:
“You believe she is in Heaven. Why are you sad for her? Isn’t Heaven a better place than here?”
“Would you want people to be sad for you if you were in Heaven?” 
“You believe you will go to Heaven some day, so you will see her again. This isn’t goodbye. It’s goodbye for now.” 
“If she were on an extended vacation and could not see or talk to you – would be you sad for her? No. You would be excited for her so why are you sad now?”

Of course, my brain was right.  All of these things were true, yet I was stuck in this looping cycle between my brain and my heart.  Logically there was no reason to be sad. Heaven is better than Earth. Logically it made sense. So why did I hurt so badly?

This loop of brain vs. heart vs. brain vs. heart continued because I could not stop hurting no matter how logically I tried to process it.

It was maddening.  For the first time in forever, my heart trumped my brain. I was at a loss. I did not know what to do with myself.

I talked with a counselor who explained. “You aren’t grieving for HER. You are grieving for YOU. For YOUR loss.”

That had never occurred to me.  Why hadn’t that occurred to me? It wasn’t the loss of HER future memories I was grieving, but mine.  It wasn’t the things SHE would never do, but the things *I* would never do with her.  I had spent the days after her death helping and planning and doing for others.  These are things I am good at.  For some unknown reason,  I needed permission to grieve. Permission to think of me during this time.  Permission to put logic on the back burner.

I still struggle with grief. I still  attempt to understand why I grieve. It isn’t logical, but like I said, the heart trumps the brain on this one.  The tears come and there is no amount of thinking that can stop them.  I’m not sure if that is the final stage of grief: acceptance. If it isn’t, I’m not sure I will ever find it.

I’m still coping with her loss.  The first of every month is the anniversary of her death.  I used to feel that it was one month further away from her. Further away from the last time I saw her face. Further away from the last time I heard her laugh. Further.

I don’t think of it that way anymore. That was my heart’s way of thinking.

I still prefer logic. And logic tells me that every month is one month closer to her because even for me, death is inevitable.

 

If you are struggling with grief and this blog has touched your heart in any way, leave a comment.  It’s nice to know there is someone out there. ❤

Pensiveaspie Expressions of PosAutivity: #AutismPositivity2014

I wanted to write a blog about all the positive and supportive things friends/family members have said to us.

I wanted to fill this post with hope and love so others could be inspired, so I reached out again to my aspie groups and asked for their stories.

What I found was disheartening. I guess I should say what I didn’t find: support.  When I asked my fellow aspies to share hurtful things friends and family had said to them, I was overwhelmed with responses.  When I asked for positive and supportive things from friends and family, I gave them over a week to respond.  Still, the answers were sparse:

Wendy W. – “Wow, that must have been tough”

Candice S. – When I told my husband, his reply was “I know” in a very casual tone. His 2 words said everything. They said that he loves the way I am and that includes the AS.

Kelly S. – “Don’t worry, you’ve always done things in your own time.”

Sue A. – “I’m glad you found answers and are embracing who you are.”
“Thank you for being so open and sharing your experience!”
“It’s good that you know this about yourself and what you can do to work on the things you want to improve on.”

So I changed the question.
Last night, I asked “Tell me something that another ASPIE has said to you that made you feel loved and supported.”  I was delighted to see this many responses in less than 24 hours!:

Abby N. – I am kind and understanding

Colin S. – I‘m glad to have met you. Your knowledge is a gift.

Aletheia K. – “I’ve felt the same way all my life, but you actually put it into words!” Or, more simply and profoundly: “Me too.”

Aubrey M. – “We are so much alike”

J.J. B. – My aspie friend has helped me by just listening and not judging

Ron K. – I understand.

Claudia A – Well, you are different. I think it’s great, and if someone doesn’t like it they can go f*** themselves.

Alyce A. – Twins!

Debby T. – We can be weird together!

Julia R.  – Being with other people with ASD can be amazing, especially if you have similar interests, and similar ways of being and communicating. I have several family members with ASD, and just being around them can feel so good because there’s no pressure to be anything different. Also I’ve finally started to understand and appreciate how earlier generations of people with AS in my family organized their lives so as to benefit from the positive aspects of AS and to minimize the more challenging and potentially disabling parts. So it’s not so much what anyone has said, it’s just the sense of the pleasure of feeling completely normal while being around others who are very similar. While also learning from them that you can be autistic and live a good life.

John T. – You guys are the only Aspies I know and you always say nice things to me.

Anne. L. – The facilitator of the Aspie Womens Group commented on how lucky my daughter is to have an Aspie Mom. I bring a level of insight and empathy to her parenting that it is unlikely an NT parent could. I really hadn’t thought about it that way before.

Sherri S. – I admire you a lot. You seem so self-possessed and competent and unruffled.  You have a golden heart.  That’s not weird. I do that too! It is more than just words. It’s a feeling of connection and acceptance. Immediate, unconditional acceptance.

Robin H. – Often times, when others say they have “been there”, they say it with a sharp tone that we’ve learned means we’re stupid and implies “quit your whining you aren’t the only one”. Whereas when my friends who are Aspies say they have “been there”, it is explained with distinct empathy showing their hearts are in sync with mine. If only the rest of the world could know how lonely of a place it is when others do not connect in that way with us.

Kerrilynn H. – You are an inspiration to others. You help others in their journeys by being so open about mine.

Anna W. –  You’re not mad, you’re not wrong, and I rather like you.  You’re neither mad nor hopeless, you’re wonderful.  You are Anna and regardless of what label anyone chooses to slap on you or whatever metaphorical box you may be put in, you will still be Anna.

Ashley M. – I know you asked what supportive things others have said to me, but being supportive of others makes me feel loved and supported myself!  Here is something another Aspie said to me: You give me strength. Because you have been so open about your Asperger’s, I finally feel like I have the strength to find my own voice. Thank you for always being so supportive.

Jenny S. – I get you. Nobody had ever told me that before.

Wendy W. – I feel a connection with you that I’ve never felt with anyone else before- I feel like we’re twins.

I was sad to see such a lack of support from our friends and family.  At the same time I was overjoyed with how accepting and supportive other Aspies are to each other.  Sometimes, our family isn’t our best support system.  Sometimes, we have to find our own.

If you have Asperger’s or Autism and you are not feeling supported by friends and family, reach out.

There are many support groups online – especially on facebook.  Search twitter for #aspie. Email me.  There is connection and acceptance here. There is friendship here.  You are most definitely NOT alone. ❤
Go where the love is.

Thank you Leonard Nimoy.

I was not diagnosed with Asperger’s until last year, but I knew I was different long before then.  As a child, I knew I was not like the other children. By the time I was in 4th grade, the school told my parents that I had completed all the reading comprehension textbooks that were available, and I was reading beyond high school level.  They didn’t know what to do with me.  To keep me busy during reading time, I was assigned to the kindergarten class to be a teacher’s aide.  While I was proud that I could read so well, I didn’t like being different.

I had difficulty relating to peers.  My black and white thinking made it difficult for me to understand the world of grey other children lived in.  Other kids seemed to be able to throw caution into the wind and just play.  Spontaneity was a foreign concept for me.  I wanted structure and predictability.  My ideal playground was a thick book filled with delicious facts about my latest obsession.  Teachers didn’t help.  They made the other children aware that I missed reading because I was different.  Almost every day I knew I would hear “Does anyone besides Pensive know the answer to question 4?” even when my hand wasn’t raised. The intellectual gap between me and my classmates was a chasm that was often too wide for me to cross. Their thoughts seemed childish to me.  I had difficulty understanding social situations and making friends.  Although I was the first person others went to for help with academics, I was the last person anyone picked to play with – if I was picked at all.  This is a trend that has continued into my adult life as well.  I wanted to play, but I didn’t know how.  I wondered if there was anyone else out there like me.

I only had to look as far as my television.  There he was.  Brilliant. Intelligent. Brave. Logical. Spock.

Star Trek.  Boldly going where no man had gone before.  In my mind, William Shatner’s dramatic acting style paralleled the way my peers over-dramatized their issues.  Every. Thing. Was. Just. So. Darn. IMPORTANT!  Captain Kirk’s actions were often guided by intuition and emotions.  Like Spock, I often thought his choices were reckless and not well planned.  He would get the crew into a dangerous situation and then rely on Spock to help get them out.

Spock, on the other hand, was exactly like me.  He reveled in logic and information.  Reading and studying a new subject was “fascinating”.  He longed for friendship, but he didn’t know how to be a good friend.  He never seemed to grasp the hidden social rules that dictate human behavior.  With a beanie cap on, he could almost pass for human except that he couldn’t. His behavior and his manner of speaking would give him away every time.  No matter how much he tried, people always knew he was different and they treated him differently because of it.  Even though he was intelligent and had studied human behavior, he struggled with interpersonal relationships. He often did not understand sarcasm and inside jokes. I would even say he is a bit naive when it comes to human behavior.  It annoyed me that Captain Kirk often appeared smug when he understood some human nuance that Spock did not.  It felt like he was saying “because I am more human than you, I am better.”  Sometimes I just wanted to wipe that smug smile off of his face.  Spock was the only person I had “met” that was like me.  I was certain Vulcans were real.  I was certain I was Vulcan.

**picture description **  Picture of Leonard Nimoy as Spock wearing a beanie cap from Star Trek episode “The City on the Edge of Forever”

I was also certain that my parents could not be my parents. My mother had an 8th grade education and I surpassed her intellectually before I completed 4th grade. My mother read and wrote at a less than 6th grade level.  She relied on me to write letters for her and read road maps for her.  A part of me viewed her as inferior because I was smarter.  It was another example of how I felt a lack of intimacy and connection to other humans. I asked to see my birth certificate many times.  I often thought I was adopted. I was sure I was somehow related to Spock.  My parents assured me Vulcans were NOT real, and I was not Vulcan. With confidence, 10 yr old me announced that if I wasn’t related to him, then I would MARRY Spock when I grew up.  I don’t think my parents had the heart to tell me that Spock was old enough to be my father’s father and the Star Trek I was watching had been filmed more nearly two decades before I watched it.

As I grew up, I realized that Spock (and Vulcans) weren’t real.  Still, I loved Spock.  Although Vulcans were not real, SOMEONE (Gene Roddenberry) created him. Maybe, just maybe, he created him after someone he knew. Someone like me. That meant that somewhere out in the big, wide world there could be another person like me.  A real-life 100% human Spock.  That gave me hope.  The idea that there was at least ONE person in the world like me kept me going when I felt isolated and alone.  I wanted to know more about the man who played Spock.  In true Aspie form, I researched and read everything I could get my hands on.

*IMAGE DESCRIPTION: Leonard Nimoy wearing a tshirt with a picture of Spock on it. Above Spock’s head, a speech bubble says “Leonard Who?” ***

With all my research I discovered I didn’t just love Spock. I love Leonard Nimoy as well.  In real life, Leonard Nimoy is very different from the Spock character he portrayed. Spock focuses on Science and Nimoy is all about the Arts and Philanthropy. He is not only an actor and director, he is also a poet, an artist, a photographer, a women’s rights activist, and a very free-spirit.  He is the opposite of Spock in almost every way.  In his autobiographies, he discusses how he often had to fight to keep Spock true to his character. Writers and others involved with Star Trek would want to change Spock and make him more “human”, but Nimoy would not allow it. I can imagine it would have been easier for Nimoy to let others turn Spock into someone more like the man he was in real life, but Nimoy was a fierce advocate for Spock. I love him for not letting others change Spock.  I love him for recognizing that Spock is perfect – just the way he is.

Every time I get a twitter message across my phone from Leonard Nimoy, I smile and thank the heavens that he is with us for another day. I really love that man.  He invites the entire twitterverse to be his family – his honorary sisters, brothers, children, and grandchildren.  He is the epitome of acceptance.  For me, there is a symbiotic relationship between Spock and Nimoy with Spock representing my Asperger’s and Nimoy representing a person who has complete, unconditional acceptance for those who are different.

Just as the writers tried to make Spock more human, the world tells individuals with Asperger’s that they need to change and be more “human”.  Before my diagnosis last year, I didn’t understand why I was different.  I felt I was unlikable and unlovable if I tried to be my true self.  I spent my life constantly evaluating and re-evaluating my behavior and personality to learn what I could do to make myself more acceptable to others. It felt so unnatural to keep changing my behaviors, but I longed for acceptance.  I could not understand why others didn’t see the world the way I did.  I could not understand why I didn’t see the world the way did.

I know now that my brain does not process information the way most of the world does. While the world processes everything in color, my brain processes information in black and white. I don’t know that I will ever be able to fully understand the complexities of interpersonal communications.  Like my favorite Vulcan, I can study it, but I don’t have the same inborn ability to absorb it by osmosis as the rest of the world does. So at best, I can study it and provide a fairly decent imitation of it. It helps me get by in the world but sometimes I feel that I will always miss that connection that the rest of you have naturally.

Since my diagnosis, I have met many other aspies online and most of us share a common love for the logical Vulcan.  We relate to him. We see ourselves in him.  We see how the rest of the world loves and accepts him and we hope someday they will love us and accept us as well.

So, thank you Leonard Nimoy for being the free-spirited, kind-hearted person you are.
Thank you for all the times you preached against bullying or mistreating those who are different.
Thank you for portrayal of Spock and for fighting so hard for someone who is so very different.
Thank you for keeping Spock true to Vulcan form.
Thank you for the hope Spock gave me and the feeling that I am not alone.
Thank you. Thank you. Thank you.
May you continue to Live Long and Prosper ❤

With love, from one of your honorary grandchildren,
Pensive

Maybe if you just tried harder… Things you SHOULDN’T say to someone on the spectrum.

This blog does not need a long introduction. The title says it all.

I wanted you to hear what NOT to say to someone with Autism/Asperger’s directly from the mouths of people who are on the spectrum.  Here are their words:

Simone B. – But you seem so normal!

Lorrain M.  – Oh but you have FEELINGS. Those people don’t FEEL.

Tama G.  – You can’t have it. You work with people. You talk normally.

Helen H.  –  Oh, everyone feels like that though.  That’s normal!

Tama G.  –  It frustrates me when people are surprised I have a husband and kids as if we couldn’t possibly have the same expectations from life. I am married with four kids. I was married and had my kids BEFORE I was diagnosed. I have had people say “I bet you would not have had kids if you knew BEFORE you had your children. Wow. What shocks me is that they somehow believe 100% that they are being some kind of supportive!!

 

Vicki C.  – You are too old to have that. Only boys have Asperger’s.   Also,  “So that is your excuse.”

Ashley M. – Are you actually autistic or just a little? Aren’t we all just a little autistic?

Tabi J – I dislike it when people don’t realize that no two people with autism are exactly alike.  For example, both my brother in law and I are both diagnosed with Asperger’s, but he lives in an apartment building that have FULL TIME support staff while I live in a mobile home with my husband that we OWN. Not only that, he also takes about 20 some pills a DAY, while the only medication that I take in my life are OTC pain relievers, cold medication, and the occasional antibiotic.

Isabel C. –  It makes me nauseous when someone tries to negate my diagnosis in any way. I know best for myself what’s true and if someone really cares they will always be supportive in their words. Most of us who’ve figured out we have Asperger’s hold it kind of “dear” because it explains so much about who we truly ARE, so to have anyone negate it is negating the truest part of ourselves.

Julia R. – I know you’ve asked about what not to say to someone with AS, but what I find frustrating is how others can sometimes behave around people with AS. Both my older brother and I have had to deal with people staring at us strangely when we talk, and at times even looking as if they are uncomfortable having to speak to us at all. Sometimes the people we’ve just spoken to won’t even respond to us directly, but rather talk around and over us as if we’re mentally impaired, not aware, or not even really present. It’s annoying when I say something, and everyone within close proximity suddenly stops speaking, stares at me, and may not even respond. Often I’ll just keep talking, or find someone more open to connect with, but the stares and/ or silence can be frustrating.

Debby T.  – I always thought you were a bit weird!

Claudia A. – I think the worst thing I have ever personally been told was a very definite and confident “NO, you are not,” when I told someone I was autistic. Just like that.

T. A.-  I’ve seen Parenthood, Rainman, Sheldon Cooper, so I know all about Asperger’s

Anne L. –  “Are you some sort of savant?  What is your special ability?”

John T. – When I try to explain that some of my behaviors are because of my Aspergers: “that’s a convenient excuse”.

 Chris H. – You’re too pretty to be autistic?!!

 Colin S. – Your grammar is too good to be Autistic. Plus, you know too much to be autistic.

Sara R.  – “I have a 7-year-old cousin with Autism, you’re nothing like him! You’re not Autistic.” Like what the heck, because I’d naturally be soooo much like a 7 year old BOY as a 20 year old FEMALE.  -.-

Tama G. –  We are all on the spectrum somewhere, aren’t we? Autism is popular now. It is the new adhd. Everyone gets diagnosed with it!  If you are a parent you get told “you must be devastated!”

Aletheia K. – I don’t really like crowds much, does that make me autistic too?

Pam M. – “Why do you want to pin a label on yourself?”

Rachel T. –  Silence. Nervous laugh. Change of subject.

Ashley M. – But there’s nothing wrong with you.  Are you supposed to be disabled now or something?

Sara H. – You know there’s no cure for autism?

 Erika S. – I still see you as a normal person!   You must have a very mild type, because I don`t see it, and I have met autistic people. They look different.

Samuel H. – Wow, you must be really high functioning!

Corey F. – But you’ve always been like that!?!

Renee M. –  It’s just a phase, you’ll grow out of (whatever behaviour)” Or “You could change/overcome that if you really wanted to”

Chace W. – Grow up.  Act your age.  Why can’t you just ____? If you’d only try harder.

Kelly Q. – You don’t really expect us to accommodate all your needs?

Riley K. –  You just need to…(insert “think more positively/stop being a know it all/lighten up/stop taking everything so seriously.)  You know, you could learn to be more social if you really wanted to.

Erika S. – You were not like this before. You could cope more. The whole AS is just an excuse

Susan D.  – well, we all have our issues/problems – said by a bully

Sue A. – “You don’t seem like an ‘Asperger’s patient’ because you look me in the eye when you talk to me and there is a connection.” My old shrink actually told me this!

Aletheia K – Everyone feels left out/friendless/alone in a crowd *sometimes*

 

When someone shares their Autism/Asperger’s diagnosis with you it is because they trust you. Listen to them.  For the most part, we are very straight forward and logic-based. If you are unsure how to be supportive, just ask.  “What can I do to support you?”

Dismissing our diagnosis by claiming “everyone feels that way” or listing the reasons we couldn’t possibly have Asperger’s does not help us.  Just because you’ve seen Max on Parenthood or Sheldon Cooper doesn’t mean you know what people with Autism are like. If you’ve met one person on the spectrum, you’ve met ONE person on the spectrum.  Are all non-autistic people alike?

“Asperger’s is sometimes called the Wrong Planet syndrome. This is because we feel like we come from a different culture and have a different way of perceiving the world”  – Tony Attwood.

For many of us, our diagnosis is something precious to us.  We’ve spent our entire lives feeling disconnected from others. We’ve spent our entire existence trying to modify our behavior to fit in and feel connected. Our Asperger’s diagnosis allows us to finally understand WHY we are so different.  It answers a lifetime of questions for us.  Once diagnosed, people with Asperger’s often seek out other people with Asperger’s and find that  – for perhaps the first time in their life – they connect. Don’t dismiss our diagnosis because you can’t understand it.

What CAN you say?
Watch for my next blog and see.  🙂  Until then.. remember this advice from the Autistic Self Advocacy Network:

You make me feel disabled. Yes, you.

When I think about my Asperger’s, I rarely think of it as a disability.  Most of the time, I don’t feel disabled.  I’m definitely differently abled.  There are weaknesses, but there are strengths too. I choose to focus on my strengths and work on my weaknesses.  Even though I prefer not to look at myself as disabled, there are things that friends, coworkers, and family members do that make me feel disabled and incompetent.

You don’t recognize that my body language is almost incapable of lying.

With practice, I have learned the art of conversation. Time has taught me that people really only want others to agree with them.  I can find a way to avoid hurting your feelings by complimenting your ugly dress without lying when you ask “Don’t you just love it?”  I can reply truthfully “That orange color is so bright and perky!” (Yes. The color is bright and perky but the dress is still hideous).   After years of getting it wrong and hurting feelings, I finally learned to look for something I like or agree with and focus on that particular attribute.  My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.

When I find something distasteful, I frown. I look disgusted.  It’s automatic. I have to remind myself to change my facial expressions.  I have to force myself to relax my face. Relax my furrowed eyebrows. Smile slightly. Nod.  It took many years to master the skill of NOT blurting out my opposing opinion.  If I don’t like you, it probably shows on my face. I have to remind myself not to shake my head “No” when I look at you.  It is almost impossible for me to act like I like you.  Because I cannot fake it, my friendship is genuine.  If I act like I like you, I really do.  Unfortunately, most non-aspies are the complete opposite.  Non-aspies are super friendly to people they like AND people they despise.  They are very dishonest in their interactions with each other. Because of this, they are unable to see the honesty in my interactions.  This leads me to my next point:

You say one thing, but do another and expect me to know what you mean. 

Social norms and rules are hard for me.  I’m a concrete thinker.  I see things in black and white. There is some grey, but not much.  When people say something, I believe them. When they say one thing, but do another it confuses me.  Should I believe what they say or what they do?

 The non-Aspie (NA) girl in this comic clearly states she doesn’t like Kay. Kay is fake.  Yet when she sees Kay, she smiles and compliments the very attributes she just criticized.  Does she like Kay or not?  My aspie mind puts it together like this:

• The NA girl SAYS she doesn’t like Kay but then ACTS like she does.
• This NA girl must ACT the opposite of what she SAYS.
• Wait!  She ACTS like she likes ME.  Does that mean she doesn’t?  Does she talk bad about me when I’m not around?
• What do I believe?  Why is this so hard?

And Non-Aspies wonder why we hate socializing.  If I asked this NA girl about Kay, I can assure you she would say that she TRULY likes me, but not Kay. I am special.  I am different. I am not like Kay.  Yet the next time she is around Kay, she would be smile and compliment her and display every external sign of friendship. Which NA girl is the truthful one? The one talking to me or the one talking to Kay?  I can’t figure it out and it makes me feel isolated.

You make me feel guilty for things I cannot control and belittle how I feel.

Anxiety is anxiety.  Whether you feel anxious because of a tiny mouse or a large group of people, anxiety is anxiety.  People with Asperger’s often have sensory issues. Loud noises, loud places, new places can be very uncomfortable for us.  Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter.  Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.

Because sensory issues play a big part in our lives, we often prefer specific foods.  Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries.  I am an adult.  I know what I like and what I don’t. I prefer certain tastes and textures.  Personally, I find certain new foods overwhelming – so overwhelming that I will check the menu of a restaurant and cancel a dinner if I don’t feel there are any “safe” foods on the menu.  When you demand that I try a new dish, my anxiety increases.  I don’t like the way it smells. What if I don’t like it?  Then I have disappointed you again. I have failed.

You don’t respect my need for stasis.

It is common knowledge that people with Asperger’s have a degree of rigidity but we are NOT inflexible.  We like predictable events. We do not like surprises. Respect that.  Don’t drop by unannounced.  If plans are going to change, give us time to adjust. We can handle managed chaos quite well.  As a nurse, I know there is no way to predict what will walk through the door at work. I anticipate this chaos and it is manageable. I know it will be chaotic.  I expect it.  When you know I like predictability yet you change our plans and surprise me, you are saying that my needs aren’t important.  When you surprise me and then act offended that I’m feeling discombobulated, you add insult to injury by making me feel like my natural reaction is wrong.  You make me feel like I don’t have the right to react.

Socializing is exhausting for us.  Most aspies have something they do to unwind. Some read. Some absorb themselves in a favorite video game or television show. We write. We crochet. We build models. We do puzzles. We do anything to disconnect from the world and escape back into our own mind.  We need this time as much as you need oxygen.  Socializing (for us) is the same a s physical workout is to you. It is draining. We need to recover.  When you don’t allow me to have my down time, you force me over-exert myself. I feel like I’m running on fumes. I’m short. I’m snippy. I’m completely exhausted.  When you act like my need for downtime is selfish, you make me feel like I can’t be myself  – like I have to be like you. You make me feel like the person I am is not enough.

When you do accommodate my needs, you are vocal about it.

Although you think you are, you aren’t being supportive when you say things like:

• “I know Pensive doesn’t like to eat anyplace new, so THAT restaurant is out of the question.”
• “You don’t have to try this appetizer even though I made it special because I knew you guys were coming. I know how you are with new foods.”
• “I know how you get.”
• “No. Go have your down time or whatever it is.”

These statements are all passive aggressive.  They imply you are trying to support me, but the support stops there. Asperger’s is a neurological disorder.  If I had a stroke instead of Asperger’s, would you say “I guess I’ll have to help you dress yourself, AGAIN?”  Would you complain that I often spilled while struggling to feed myself? No.  You wouldn’t. But you complain about accommodating my Asperger’s. You make me feel like a burden. You make me feel toxic – like I ruin everything I touch. You make me feel like the world would just be better off without me since I am just so damn difficult to deal with.

You talk to me as if I am simple-minded.

Having Asperger’s does not lower my IQ yet I have had people suddenly start speaking to me as if I have an intellectual disability after they learn of my diagnosis. These are people who are supposedly aware of what it means to have Asperger’s. People with family members who have AS. Yes, I have Asperger’s, but that doesn’t mean you have to speak to me in one syllable words as if I were a toddler.  While I may lack social skills, intelligence is something I pride myself on. Talking to me slowly and clearly while nodding your head “yes” only makes your ignorance even more obvious.  If you are not sure what I need, ask.  My speech is not impaired. I assure you I can tell you exactly what I need.  When you talk to me like I am a small child, you dismiss me as an intellectual. You rob me of the attribute I am most proud of.

You do these things.

You do.

The people I love. My friends. My family.  My coworkers. In one instance you shrug your shoulders and roll your eyes to dismiss my Asperger’s and anxiety, but in the next instance you act as if I am so disabled by my Asperger’s that accommodating me is a burden.  Which is it?  Is my Asperger’s non-existent  or is it SO existent that it burdens you? You make me feel less than. You make me feel disabled.  You make me want to hide inside my mind because the fear of never being good enough is too much.

What can you do?

• Don’t pretend to like me if you don’t.  You can be polite without being friendly.
• Be honest and straightforward. Say what you mean. Mean what you say.  Don’t say it mean.
• Respect my boundaries. Don’t force me to do things/try things I don’t want to do.
• I am not neuro-typical. Please don’t expect me to be.
• Recognize that I am a planner.  Let me know as soon as plans change.
• Let me have my down time to recharge.
• Don’t be passive-aggressive.
• You don’t always have to accommodate me.  If you want to go, and I don’t – go anyway. My feelings will not be hurt. I would probably rather hear about it than actually be there.
• Talk to me the way you would want me to talk to you. Don’t patronize me or talk down to me.
• Research Asperger’s. Ask questions.

 

It boils down to respect.  Respect my limitations and celebrate my strengths with me. Just like you, I am more than just my weaknesses.