Inner Aspie to "I Wish I Didn't Have Aspergers" - An AutismPositivity2012 Flash Blog Event

Dear 'I Wish I Didn't Have Asperger's'


When I think of that statement I think about the times when I, myself, thought it.  My mind skips back years in time where my own journey wasn't always easy.  Those times, are hard to think of now.  I still have those times now where I think, just for a moment, that I wish I didn't have Asperger's. This letter may well be for me to reflect on during those moments as much as for others out in cyberpsace looking for some consolation.  This letter may be for my son, when he gets a little older and thinks 'I wish I didn't have autism' during his moments of inevitable struggle.

What would I like to say to the child that I once was and to other autistic children out there right now?  I'd like to remind them that the things that seem to huge now won't be in a few years.  I wish I'd known that when I was alone at recess, or picked last at PE everyday.  I'd tell them that it's okay to be an individual and pursue your own interests, instead of worrying if the other kids will approve.  I'd tell them, you will find a friend, a good one.  Just be patient. Do not accept 'friends' that treat you less than in order to have a friend. I'd say, you are good enough, just as you are. Repeat that to yourself until you know it to be true.  This will be the one thing, if any that I would make sure that I as a child would have known.  I am good enough just as I am.  People that are worthwhile will respect me as a person, autism and all.

What would I say to that awkward adolescent that I once was, and to the other autistic adolescents out there?  I'd tell them to just hold on.  I know it's hard right now. Being a teenager is hard for everyone, but even harder for us on the spectrum. I'd tell them that they'll get a chance to date and find love.  I know it can be lonely.  I know everyone else is telling you to be patient and the right one will come along.  I know you're tired of that cliche.  I know these words won't stop you from feeling lonely, but please let them soothe you some into knowing that it will happen.  It may not be tomorrow. It may not be next week, but please know that you will not be lonely forever.  If I had a way to tell my former teenaged self something, I'd have told myself to keep busy doing what I like, being confident with myself and the dates and friends would come naturally.  Fretting, obsessing and constantly trying to problem solve will make relationships harder to come by and quite possibly prevent them from happening in the first place.  Getting a boyfriend or friends is not like a math problem or crossword puzzle.  It can't be solved by intellectual thought.  It has to go through the natural stages to evolve.   I'd tell myself that I need to learn about meditation and find a good therapist to help me learn about emotions. I'd tell autistic teens that what others think don't matter as much as what you think of yourself.  Pay attention to keeping things in order on the inside and things on the outside will be much smoother.  Learn how to detect and handle your emotions.  This is not something that is firsthand for us.  It needs to be learned and is crucial to success.

I'd tell teens to take advantage of the internet.  The amount of support available is endless. Find other ASD teen to chat with.  Find ASD adults to mentor you.  We are here.  We've been where you are and understand.  We can help guide you and are more than happy to do so.  Don't post on Facebook or constantly tell your peers that you're lonely ect... This will have the opposite effect you are hoping for.  Find some online support group to confide in.

For young autistic adults, I'd tell them most of all, that it's okay to ask for help.  It's okay to not know things.  There is no shame in needing assistance.  Don't try to do everything on your own to prove that you can and to prove you're independent!  It takes a strong person to ask for help when they need it.  Don't drive yourself into the ground with anxiety and depression by trying to do it on your own.  Find support from somewhere.  Sometimes, with some of us, it won't be family.  We'll have to find it somewhere else.  Take advantage of disability services when and if you need them. 

What I would want any autistic person to know, is that being autistic is okay. Don't waste a minute of your life hiding away who you are trying to be someone you're not.  Do what you love, and love what you do. This will help instill pride.  Immerse yourself into positive actions and let that direct you to self worth.  Don't ever let the bullies in your life win by repeating their stories in your head through the years.  If you can't shut the stories off, get to therapy to help you.  Know, I mean really know that you have worth just as you are.  Be authentic.  Be compassionate with yourself.  You are going to have bad days.  You are going to have sensory issues and meltdowns.  Again, learn your body and emotions. It will give you a better opportunity to handle these things when they come up.  Be compassionate and forgiving with yourself when these things happen. Remember:  " I am good enough just as I am.  People that are worthwhile will respect me as a person, autism and all ." That is your new mantra.  The world can be noisy and overwhelming. Sometimes, you might feel like it's all too much, or your heart literally aches with loneliness.  Please, remember that there's many of us that share your story or care very much.  We have autism, too, or children that are autistic, or friends, and family.  You're not alone. Reach out to us.  We're here.

The Undateables? Not quite.

Has anyone in the UK seen the show 'Undateables'?  I haven't, but from what I've seen I 'm still leaning toward the POV that it's voyeuristic and portraying the misinformed public opinion that disabled people are less than in the world of romance.  One thing I do see is that it is in the spot light and people are now talking about it.  That means that the general public is having to think about the generally accepted stereotype that people with disabilities are somehow not meant for love, relationships, and sex.  We can and we are, and do do those things.  People most often hate, or repel what they don't understand.  I am hoping this show can help everyday people empathize with disabled people in the way that they see they're not so different after all. It won't seem so odd anymore, thus removing some stigma.  Getting a discussion going, exchanging opinions and getting people really thinking can all be good things.  Humiliating vulnerable people that just want love is a where I'd see the show possibly being negative.

What's your opinion of the program?

Wordless Wednesday

I've never done a Wordless Wednesday post, so I thought this might be a good time to try! :) I realize that I'm not following rules by writing all these words on my 'wordless' post, but I don't follow rules very well, and am too verbose to contain myself.

This picture is Bubby's new thing he does.  It's like lining things up, but instead, it's stacking.  He sometimes will spend a couple hours painstakingly stacking legos and other objects to reach as high as he can go.  We thought this one was mighty impressive.

Safer To Be Alone and the Bubby List.

I said earlier in my video post that I would talk about what Bubby's teacher told me at conferences 3 or 4 weeks ago.  I am still a little emotional about it, but I think that I can make a post without crying all over my keyboard now, at least.

I have noticed that Bubby seems to not want any peers to spend any time with him in the last few months that wasn't mandatory.  He turns away any child that comes to the door.  If he does let them in, he begrudgingly plays with them, but only what he wants to play and for a short time.  I had wondered why this is so. A few years ago, he would have been delighted to have a friend over.  In fact, he asked for it, often.  This shift has been setting on my mind precariously.  I knew it had a reason behind it, and I had a feeling it wasn't a good one, necessarily.  I was correct.

I found my answer at conferences.  I sat there leaning forward earnestly in the little tiny chairs waiting to hear how great Bubby was doing.  He is usually so well liked by the staff and tends to be a favorite of many teachers.  His teacher is wonderful, just the most empathetic, warm, nurturing Grandma type you could ask for.  I was hoping for his most spectacular year, because she is just so supportive. But, his peers, it seems have noticed his differences.  She said that he 'marches down the hall like a Hitler march' (I'm guessing she means goosestepping) and it makes people stop and stare.  It makes them laugh and point, which makes him mad and upset.  He rocks in his seat and I'm sure hums, as that's his favorite stim.  He tells on every eye roll, or push he receives, garnering no level of importance for a genuine put down to a mannerism meaning they would like him to stop talking.  He tells on them all just the same.  He becomes offended by them all just the same, and she said, he keeps score.  Once you've been on the list of 'people Bubby don't like' you are likely never to leave the list.  I can understand this, because I am a lot the same.  I am more flexible and have levels to my lists, but I am much older.  She sees this as a character flaw on his part, because as she put it 'if you block out everyone who ever upsets you forever, you will have no one left'.  She also says that he does not ever partner up with any peer for anything.  He prefers to be alone, almost all of the time.  There was only one girl (it's always girls with him) that he made friends with and she was only a temporary student his year, unfortunately.

Of course, we talked to her about telling the kids that he does these things to hep regulate his sensory system, but do 4th graders really know what that means? Do they care?  We also suggested that she read 'All Cats Have Asperger's' to the class to help explain it to them in a way they may be able to explain it. His 2nd grade teacher read it to his class, but it was his class that year.  There's different kids in his class every year.  I am hoping that is they understand why he behaves the way he does that they may be more understanding of his differences.  I figure, we might as well identify them, and bring them out for discussion, because if we don't they'll come to their own conclusions about things, and they will probably be less than kind.

The part that makes me the most sad, is the wall of isolation he is putting up.  His teacher seems to see it as an inflexible thinking pattern.  A black and white solution to a social problem, that is further lending itself to more problems.  I know what it is.  I understand why it is there, and it's the reason I am so sad for him.  He has decided that people are unpredictable, and manipulating.  They do things in sneaky ways that are defined in their body language, or in a facial expression.  He is unable to read these things with accuracy.  He has decided that it is safer and easier to just be alone.He has realized that he is at the bottom of the social pecking order and will not be able to climb up.  He was probably unaware that there was one until recently.  He just knows that everyone else seems to have more info, more knowledge, more experience, more intuition than him at any given moment and he will be subject to ridicule and dislike without provocation.  I know for every time the teacher has caught someone teasing him, or bullying him, it has happened at least five times where she didn't.  He knows a truth that most autistics learn and that is most people can't be trusted.  It is safer to be alone.

I was hoping that possibly his life wouldn't be this way.  I was hoping that maybe he would have an easier time of it.  I was wrong.  People are still people, and social protocol is still basically the same.  I was much older before I figured this all out. He seems to know now at age 10 what I figured out closer to age 14, even though he has always been significantly behind me in every other way in development. He has figured out that people can lie, cheat and steal without much thought.  They sometimes don't follow the rules.  They sometims are cruel to someone without cause only to better their social perception.  These things don't make sense to an autistic person.  We would never do that.  We also don't see it coming when it's something we'd never do.  Mindblindess is such that if we wouldn't do it to you, then we don't expect you to do it to us.  The thought doesn't occur to us.

I just hope that he has left a little faith left in humanity to see that there are some good people out there. Sometimes, during the pre-teen and teen years these people are hard to find, because that's when they tend to be the most self-centered and even the most nicest teen will hesitate to put their social status on the line to stand up for the underdog. I hope he finds at least that one friend that he can share his time with, as well as his trust.

Reminiscing Childhood Play As a Girl On the Autism Spectrum -Edit

I realized the day before yesterday that I had left out a very important part of my previous post about childhood play.  I had forgotten to mention my all encompassing Star Wars obsession.  This covered years 3-8 or so.  When I suppose Little House On The Prairie took over.  I longed for Star Wars toys, but never had any.  My parents thought that such toys weren't for girls.  I loved going to visit my cousin, so I could play with all of his Star Wars stuff.  I also had an uncle that is only a few years older than me, who had just as big of an obsession with Star Wars as I did.  He had light sabers, and boxes of action figures.  Sometimes, when we would all get together we would play Star Wars.We'd get assigned our character.  I'd always be princess Leah.  Always.  This was not negotiable to me.  I'd cry so hard that I'd get sick if I was told otherwise. The couch was the ship, the chairs were the little personal vehicles.We'd decide on a plot and act it out. It was so much fun.  I wanted to be her in real life and often pretended I was, reenacting scenes.  I could spend hours alone imagining that I was on wild adventures with my imaginary crew.  This didn't go very well at school when I did this at recess.  I'm sure this is part of why I difficulty making friends.  Who says people on the spectrum lack imagination?  I know in this way, I certainly didn't!

It is odd that now, I hate Star Wars.  I've never watched any of the newer movies, despite my best efforts to.  I always fall asleep. It bores me to death, even more so than Star Trek.  I don't know what changed, or made things different.  I just know that Star Wars played a big part of my life growing up.  Too big in fact, to leave out. 

If your child wants toys that seem odd considering gender, please just let them be themselves.  There's no harm in girls playing with trucks and action figures, or boys playing with Barbies, or dishes.  Repressing their true selves is never healthy.