Pensiveaspie Expressions of PosAutivity: #AutismPositivity2014

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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.

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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.

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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!!

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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

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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!”

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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!?!

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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:
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