Schedules Are Important (To Me)

I wake up.  I go to class.  I eat breakfast.  I go back to class.  I treadmill.  I go swimming with my friend.  I go to the grocery store to pick up my prescriptions and also some snacks.  I come back home.  I eat lunch.  I sit alone for 5 or 6 hours.  I watch TV - probably The West Wing.  I check my internets - my email, tumblr, etc.  I go buy more food.  Maybe I text message a few people.  I eat dinner and have my meds.  I am skyped by my mother or grandmother.  I probably text message again.  I maybe do some homework.  I make a schedule for the next day.  I make some lists.  I read things that probably aren’t important but feel important at the time.  I have my soda if I haven’t had it already.  I maybe watch some more TV.  Maybe I check my email again.  Maybe I finish homework.  In preparation for bed, I clean my room - Lysol my surfaces and electronics.  I plan my schedule for the next day and pack my bag appropriately.  I brush my teeth.  I shower.  I climb in bed.  Maybe I watch a bit of relaxing TV, probably Frasier or some old Vlogbrothers videos on Youtube.  I sleep.  

I need a schedule.  I need a plan.  I get so anxious without a plan.  That’s something my friends don’t understand.  My friends don’t understand that I cannot function without a plan.  I need to know what is happening with me and with other people in order to feel comfortable and sane.  So right now I’m happy because I know what I’m doing tomorrow.  It’ll be hard tomorrow, when unexpected things change.  I hope I can get a bagel for breakfast.  If there aren’t bagels, that might be difficult.  I hope I can get soup for lunch.  If there isn’t soup, I might not handle that well.  

I’m old enough and self-aware enough that I see and understand my limitations.  I cannot spend more than a few hours of “social time” per day.  And that’s difficult.  I wish sometimes that it would be easier for me.  Or, maybe, what I wish is that people would understand what I need.

Brutal Honesty & Asperger's Syndrome

This is a quotation from a speaker callled Penelope Trunk.  I do not know Ms Trunk, but I really like this quotation, and after having done some research, I've learned that she is on the autism spectrum herself, with a diagnosis of Asperger's Syndrome.  Asperger's, by the way, is also my official diagnosis, though I often find myself lumped together with people all over the spectrum and I, myself, generally identify as "autistic" instead of specifying.  Regardless, this is a quotation that is so relevant for me.  This is a quotation that I wish I could show each and every person I interact with.  This is a quotation that makes me genuinely happy.
I was working on a job application today with my best friend.  I told her that the application wanted me to list some of my skills and I was having difficulty compiling a list.  She offered me "brutally honest."  At first, I didn't know what to make of this.  I asked if she was being facetious.  But no: she assured me that tend to be "brutally honest."  I guess that's true.  And honestly, I probably offend people.  I probably do, but the thing is: I don't intend to.  I didn't even notice I was "brutally honest" until it was pointed out to me, twenty years into my life.  Please enjoy this quotation from Penelope Trunk.  If you are on the ASD spectrum, perhaps you will see some of yourself in it.  And if someone you love is on the spectrum, perhaps it will help you to understand them better.

Penelope Trunk states:

“Assume the person with Asperger's is not intending to offend you. Intention to offend is actually a complicated line of reasoning that someone with Asperger's doesn’t have…People with Asperger's want to be nice. It’s very important to them even though you would never guess that by their actions. So if you tell the person what you want, and give specific direction, they will always try their best to do it, because they want to be nice. That said, them trying their best might look to you like not trying at all…Just because someone with Asperger's says no right now doesn’t mean it’s no later. No is a defense mechanism for “I don’t like change.” You can try asking again a second time later.”


I like that.

Weakness

It is terrifying to wake up to carpool to work.  It is early morning.  It is cold.  I know my schedule, I have a plan, and this gives me security as I walk to meet my colleague’s car.  

But then, there’s another friend in the car, and this friend is having an emotional crisis.  And it’s not my crisis and I don’t understand what she is feeling or how I can fix it, so I sit silently, rocking in the back seat of the car, sipping my tea and stimming.  

Suddenly, my day is unpredictable.  My day is chaotic.  Every thing I touch seems to break.  I no longer remember social rules; I regress to a younger version of myself and avoid eye-contact, deny people the opportunity to engage in conversation, and refuse to speak unless it is of something that I am interested in.  

I had an Autism Day today.  I met a trigger at 6 in the morning in a navy blue Nissan and now, 17 hours later, I find myself curled up on my desk chair, unable to think, kicking my feet uncontrollably into the bottom of the table.  My knees are bruised now.  

It is embarrassing when I encounter my own weaknesses.  I suppose that’s what I’m getting at here.

Break-Up Ouchies

My boyfriend and I broke up a few months ago.  We’re both 20.  We’d been together about a year.  He was my first boyfriend and also my first love.  And I miss him.  I miss him in a way that is cyclical.  First I miss him a little bit.  Then I miss him a lot.  Then I hate myself for missing him.  Then he’s out of my head.  It’s weird and it’s complicated and it’s painful and it’s strange. 

I am autistic.  He is autistic.  I miss that he used to “get” me the way NTs never do.  I miss that I not only lost a boyfriend but my best friend.  I miss cuddles and kisses and holding hands.  I miss him missing me. 

I don’t make friends easily and I guess I’m afraid I’ll never meet anyone as good as him, ever again.  I guess I’m scared of all the “what ifs” in my uncertain future.   

I get so anxious when I don't know what is happening and these last weeks have been brutal on my sanity.  I am nervous about the future.  I am nervous about how so much has changed.  I am nervous because I can see my social skills regressing.  I am nervous because this is all new and scary to me.  I am nervous because I wonder whether I was ready for it in the first place, or whether I will ever be able to be productive and in a healthy relationship.  I wonder whether I will ever meet another autistic person who can care about me like he did.  

Anyone have any advice?  Particularly seeking advice from autistics (especially autistic adults) who can relate or people who are just good at feelings? 

I Don't Like Change

I am a methodical person.  I live each and every day in the same way.  When I make deviations from my schedule, they are only after careful and precise planning.  I want to know where I will be and what I will be doing at every moment.  This is the only way I can feel secure.  And I even have a compulsion to know what other people are doing during my planned activities.  That bothers my friends, I know, but it's not something that I am capable of changing.  I've been told to and asked to, but my brain is my brain and I can't bring myself to be all right with such uncertainty.  It makes my heart rate shoot up, it makes my speech pattern change, it makes my hands shake and my arms flap and my body rock back and forth or side to side.

I get anxious when plans change.  I don't understand why plans change.  It's a strange thing, really, because I am twenty years old and intellectually I accept that there is entropy in the world and some things are bound to change, but when it happens I still revert to almost a state of shock.

I have a letter from a doctor which states that I am "resistant to change" and that is "due to diagnosis of Asperger's Syndrome."

It's hard on me though.  I have spent my whole life aware that I like to be "in the loop," but invariably one day something will change and I will find myself floundering in space and time, unprepared for an uncertain future.  I detest little changes, and larger changes frighten me to the extent that it is currently midnight and I am lying in bed, unable to sleep, because I don't know what my future will hold.  I don't know where I'll be at 1:00 PM tomorrow afternoon, and that frightens me.  I don't know where my friends will be or where my family will be.  I don't know who they will be with and what they will be doing.  I am suppressing the urge to phone right now, to ask, and to make somebody promise to be at a certain place, so there will at least be some semblance of understanding of the future.

Spontaneity terrifies me.

The Days I Hate Autism

My best friend told me today that she hates my autism because sometimes she needs to talk about her feelings and I tell her to "get over it" because what she's feeling doesn't make sense to me and I'm uncomfortable around people feeling strong emotions.  She told me I was being selfish.  
I told her I was being me.  

I am 20 years old, and this is the first time I've ever encountered anyone who openly suggested that I would be better without autism.  

I am angry.  

I am angry and I am confused and I feel betrayed.  I want to change.  And I am equally frustrated by the idea that *I* am questioning my worth as an autistic person and by the knowledge that I will be this way forever.  

Truths About Autism

I suppose it's possible that there are no universal truths, but in my 20 years of living with autism, I feel like I've picked up a thing or two about autism.  And maybe you don't agree with everything in this list.  And this list is probably not exhaustive.  But this is a list of what I think.
- Every autistic person is unique
- There is no such thing as a "high-functioning" or "low-functioning" autistic person
- Every autistic person has unique skills and abilities
- Every autistic person has difficulty with some things
- Every neurotypical person has difficulty with some things, too
- Nobody's autism is "more severe" or "more mild" than anyone else's
- All autism is equal, but all autism is different
- Autism is not a disease
- Autism doesn't need a cure
- Every autistic person has a different relationship with his or her autism
- It's all right to have a love/hate relationship with your autism
- Meltdowns are normal
- Stimming is normal
- Autism is not something to be ashamed of
- There are some things that, despite all the advocacy work, only autistic people will ever understand
- There are also things about NTs that autistics cannot understand
- Autistics are more adaptable than you think; we've been coexisting in a NT world for this long, we can keep it up forever
- Each autistic is the most knowledgeable person there is regarding his or her own autism
- It is all right to want to be "normal"
- It is also all right to want to be unique
- Some things are harder for autistics, but other things are harder for NTs as well