End of Semester/Beginning of Summer Holiday

I did fine in my classes from last semester.  Maths was a bitch but I did okay.  My Lit course was interesting, we read some cool stuff.  American Multicultural lit, we read a bunch of different stuff: Arab, Asian, African, Hispanic, Native, and LGBTQ.  Introduced me to some cool authors.  I successfully did a presentation.  Ten minutes on any artist/author/musician in a way that relates to multiculturalism.  My presentation focused on autism/neurodiversity as demonstrated by John Elder Robison in his memoirs/autobiographies “Look Me in the Eye” and “Be Different.”  I do not like presentations but this one wasn’t that bad.  I wrote down exactly what I was going to say and was just able to read it off.  I got 100% on my presentation so not bad for my first successful presentation. 

School let out a month ago and I’ve elected to not take any summer classes as it would clash with the family reunion this year which is taking place in Branson, Missouri.  So, I get a nice enjoyable 3-month long holiday.  I’ve just been hanging out a home, reading, playing video games, donating plasma (that will be my next post), helping out my grandmother.  On Sunday, I have to go over and paint her front door and maybe the door to her garage.  But mostly I’m just relaxing at home and doing some fun day trips.  My parents and I went to Sandusky to pick some stuff up and we visited my great aunt for a bit.  Yesterday we, along with my sister and nephew went to Sauder’s Village (interactive museum about live in the 1800’s) for the day.

30 Days of Autism Acceptance: Day 30

Talk with pride. Are you proud to be autistic? How do you show the world your pride?

I am not proud to be autistic. Not because I’m ashamed or anything but because I take issue with the concept of pride itself. I have a bit of an issue with being proud of things that are outside of my control. How can someone be proud of something they didn’t accomplish? It just strikes me as kind of odd. I think in order to have pride for something, it has to be something you have accomplished or played a role in. I’m not proud to be trans or white or autistic, it’s just who I am. While I wouldn’t say I’m proud to be autistic I’m definitely not ashamed of it. I quite like being autistic; it’s who I am. I certainly would not want to be anyone else. Autism provides so many great experiences that typical people don’t get to have. So while I am not proud to be autistic I am quite happy being so and would not wish to change it.

I don’t show pride so much as I show my experience and thoughts, both with this campaign and year round. I’ve not been as forthright in the past, particularly with the people I am close to but I’ve not really held anything back in this campaign. Several of my family have approached me and said they understand me much better now and that’s really what I was hoping for. For people to understand the autistic though process and how we experience things on a day to day basis. I think I’ve definitely made a good start though this campaign and I will hopefully continue to be able to put my story out there.

30 Days of Autism Acceptance: Day 29

Talk about executive functioning. Do you experience executive dysfunction? How do you deal with it?

The formal definition of executive functions is: 'a set of processes that all have to do with managing oneself and one's resources in order to achieve a goal. It is an umbrella term for the neurologically-based skills involving mental control and self-regulation'. Executive functions are the skills that everyone uses to organize and follow through with information and instructions. This includes planning, working memory, attention, problem solving, verbal reasoning, inhibition, cognitive flexibility and, initiation of actions. People with autism often have deficits with executive functioning.

I have so many problems with executive dysfunction which my parents usually attribute to laziness or procrastination. They don’t seem to realize that I’m (usually) not being lazy I just don’t know where to start. The best way I’ve found to deal with executive dysfunction are lists, getting into a routine, clear instructions and, timers. For important tasks, I make a list with clear and detailed instructions and I set times for how long I have to work. Frequent breaks help to keep me from getting overwhelmed. I’ve found that this is the best way to get me to function, though it doesn’t always work.

One of the biggest things I have trouble with is lack of clarity in instructions. This is especially noticeable in schoolwork that has non-detailed instructions. I become stressed, panicky and, unable to start on projects that are not clearly detailed which often results in me leaving it to the last minute and then having to rush to finish it. I just had a presentation I had to do and the instructions included a list of questions we were supposed to think about but it also said not to answer all of them or use them as a way to organize the presentation. If we weren’t supposed to use them then why the fuck were they included? It also told us to have a handout or PowerPoint but didn’t actually say what we were supposed to include on it, how long it was supposed to be, or how we should format it. She didn’t tell us what the grading criteria was. The whole thing was so confusing and stressful.

I think there needs to be a determination about whether being able to do something, but not actually doing it/being able to do it some or the majority of the time actually counts as being able to do something. For example, when doing laundry, I know how to fold and put away my clothes and I’m physically capable of doing so but when it comes to actually doing it there seems to be a disconnect. Most of the times my clothes end up folded or unfolded and placed in a pile on the chair or floor. In the process of doing the task my brain just kind of stops halfway though and things remain undone.

It can depend on what I’m doing but I often have a hard time moving from one task to another. It’s like I get stuck and just can’t move on or stop what I’m doing. Even if it’s something I want to do. One of the most common situations this happens in is when I’m in the car; I will arrive someplace but be unable to make myself get out of the car. This also seems to happen a lot when I’m at my grandmothers and trying to leave, I’ll be sitting there and say, ‘I’m leaving now’ but be unable to actually leave. Sometimes I end up stuck there for over an hour continually saying I’m leaving but unable to actually get out of the door.

Another way I’ve found to stave off executive dysfunction is getting into a routine. Like when I first started cleaning the house, my tasks were out of order, half of the things didn’t get done, it took forever as I jumped from task to task. Now that I’ve gotten a routine down, I do things in the exact same order every time and it goes much more smoothly. Unless for some reason I can’t stick to my routine and then I become stressed out and irritable. This can often lead to the unfortunate occurrence of an argument on cleaning day when people are over and my parents try to reorganize how I clean. My parents don’t seem to understand that I need to do things in a certain order.

30 Days of Autism Acceptance: Day 28

Talk about autism as a disability. Do you think autism is a disability or a difference? Or both? Do you feel more disabled by society than by your autism?

I would definitely say autism is both a disability and a difference. Some aspects are positive while others can be disabling. I believe that I am more disabled by society’s lack of accommodations than by being autistic. My behaviors and social skills are not wrong they are just different and if it weren’t for NTs being so particular about the proper way to behave, I would not be disabled, or at least not to the extant that I am. However, even if the barrier of having to present in a typical way was removed I would still have a lot of trouble with things and I would still class myself as being disabled.

30 Days of Autism Acceptance: Day 27

Talk about eye-contact. Do you make eye-contact? Why or why not? Does it make you uncomfortable?

I don’t make a lot of eye contact. It makes me really uncomfortable and when I am doing it, it takes up all of my attention. So, I can either be looking into someone’s eyes or I can be listening to what they’re saying. I will do brief glancing eye-contact with the people I’m really comfortable with, but the neurotypical brand of eye-contact is outside of my capabilities. I don’t really catch or understand the little micro expressions people do so it seems kind of pointless to make eye-contact when I don’t get anything out of it and it stresses me out. I usually use vocal tone to figure out their emotions which seems to work well for me.

In school and out in public I usually wear sunglasses. They serve 2 purposes: to block out the fluorescent lighting that most places seem to have and to hide my lack of eye-contact. In cases without the sunglasses I typically look at the ground or off to the side, though sometimes I attempt to appear like I’m looking them in the eye and I look at their forehead. But for the most part I don’t really care, most people know I’m autistic so it seems like a waste of time trying to blend in when it really serves no purpose.

30 Days of Autism Acceptance: Day 26

Talk about echolalia and scripting. Do you use echolalia? What about scripting?

Echolalia is defined as the meaningless repetition of another person's spoken words. I don't really agree with this. Just because echolalia is a different way to communicate does not mean it's wrong or meaningless. Scripting is a form of echolalia.

I don’t do much verbal echolalia. At least not in conversation, I do seem to have a lot of echolalial stims. I’ve mentioned my ‘Nicky Nicky Nicky’ that I used to do as well as ‘Bah bah bah bah bologna.’ The majority of my echolalia seems to be sort of mental repetition. I’ll say or hear something and end up repeating it in my head for ages and ages. And it usually has a progression to it. Something like ‘I went to the store’ will eventually become either just ‘store store store’ or me spelling it out over and over. Sometimes I do catch myself saying it out loud but usually it’s just in my head.

A lot of my verbal communication is scripting. I do have a semi-functional collection of phrases to get me though the most common social scenarios. My mother has commented that I don’t have a conversation so much as make statements, which makes sense if I’m scripting a lot. The downside of scripting is that its only really useful for basic small talk and very common interactions. Anything more intensive than asking and responding about the weather or how I am today actually requires a thought-out response, which is unfortunate and can make me seem somewhat laggy. I’m sure my interactions get boring as well if I’m always saying the same responses. I do try to kind of alternate my phrases every once in a while so conversations with me aren’t quite so monotonous but I’m not sure how well I actually accomplish that.

My language is already odd, it’s stiff and more formal and my terminology is a bit different from the typical person my age. As I’ve mentioned before Britain is a special interest of mine and I’ve picked up a bunch of British terminology which has worked its way into my scripts. I’m sure this comes across as even more odd as the typical American doesn’t go around saying things like ‘this needs to be put in the post,’ or ‘mind the lorry’ or ‘I have chocolate digestive biscuits.’ I should probably make it more of a priority to learn some new and more common scripts but as I can usually communicate okay it’s not something I’m too chuffed about.

30 Days of Autism Acceptance: Day 25

Talk about meltdowns/shutdowns. Do you have them? How often? What are your triggers?

I have both meltdowns and shutdowns. The frequency really depends on what exactly is going on in my life both in general and on a day to day basis. On a large scale, if it’s during the school semester or while preparing for some sort of big change or a holiday when people invade the house it makes the threshold lower and I meltdown/shutdown more often. While during more sedate times, I’m usually better able to cope, they occur less frequently. Depending on the situation I can have them every few days to every month.

I think I’m more prone to shutdowns than meltdowns, though they both occur with some regularity. I don’t always notice I’m close to meltdown/shutdown but when I do it’s usually that I notice I’m very irritable but not really sure why. In cases where I notice I’m close to meltdown I can sometimes head it off by retreating to my room and watching a movie or sleeping.

During a meltdown, I usually end up shouting, pacing, crying, banging my head, acting illogically, my responses get shorter and more snarky, sometimes I just really want to scream and pound on the floor (I usually don’t do this anymore). Some of my common triggers are change of plans, doing too much socializing, lack of clarity in instructions, prolonged stress, sensory overload, being tired. Now I can usually handle these things happening individually or in pairs but if I’m already stressed out or if too many of them happen it can cause a melt/shutdown.

One of my biggest triggers is when things don’t go according to plan or don’t work properly. Obviously, most people get upset when things don’t work as they should but in my case, it seems to affect me more profoundly. I’m easily frustrated and not very patient. Something will go wrong and I kind of spaz out and usually end up lying on the floor for a while unable to move or think. I guess it I would describe it as a meltdown, followed by a shutdown. I get so agitated and upset, I usually pace or rock or cry and then that becomes too much to handle and I go into shutdown and end up lying face down on the floor or bed.

30 Days of Autism Acceptance: Day 24

Talk about the stereotypes and misconceptions that neurotypicals and allistics have. What stereotypes have you heard about autism? How do you respond to people who have incorrect stereotypes about autism? What kind of things should people not say to autistic people? What’s something you wish NTs/allistics knew about autism?

Some of the most common stereotypes I’ve come across are the following and to be clear all of them are complete rubbish: 

• ‘Autistic people are like children/have the mind of a child.’ A lot of us go to university, get married, work, have children of our own. That doesn’t sound like a child. And even for the people that can’t manage to do those things it doesn’t make them a child, it means they may require a bit more support but they are not children. There is no one way to be an adult. You don’t get to dismiss someone’s adulthood because they do things differently than how you would like. 
• ‘Autistic people are all intellectually disabled.’ Most autistic people have average to above average intelligence and even for those that don’t it’s not a reason to treat them like a child. Intelligence is not the most important thing in the world. 
• ‘Autism is something that only effects children/something we grow out of.’ You can’t grow out of a neurotype. Autistic people are born autistic and we will die autistic, it’s not something we grow out of. 
• ‘Autistic people don’t have emotions.’ We may not be able to show them as much but we definitely have emotions. Just because they don’t always present in the typical way doesn’t mean they are not there.
• ‘Vaccines cause autism.’ This is by far one of the most idiotic things I’ve ever heard and despite all the evidence to the contrary some people really believe this. There is no arguing with these people.

Though it can depend on the situation I usually tell people, with documentation and examples, as to why their opinion is a load of crap (I word it a bit more tactfully). I’m not really sure how well this approach works. Most people seem unwilling to change their opinion even when presented with factual information to the contrary. Though a couple weeks ago I did manage to successfully convince someone that autism speaks is awful so I guess it works sometimes.

What not to say to autistic people has already been partially covered on day 12 in the discussion about ableism so I don’t have too much to add. Along with the above statements you shouldn’t say anything about how we don’t seem/look autistic, don’t say we’re high functioning, don’t compare us to your young child, don’t ask us to act more neurotypical.

Something allistics/NTs need to remember is that autism is a huge spectrum with lots of variation in how it presents, no two autistic people are the same. We have a saying: If you’ve met one autistic person, you’ve met one autistic person. We are all different. So don’t go comparing us to anyone else, I can assure we are not all the same.

30 Days of Autism Acceptance: Day 23

Talk about your living situation. Where do you live? Do you live alone or with other people? Are you happy with your current living arrangements?

I currently live at home with my mother and stepfather. It’s the classic 25-year-old nerdy, socially inept person living in the basement scenario. I can’t do anything about my living situation now, but when I’m financially stable I’d like to move out. Either into a group home or with a roommate. I don’t think I would cope very well living completely on my own. I’m too forgetful and easily overwhelmed. I think things would be okay at first and then quickly go downhill to a point where it would just be a very unhealthy/unproductive situation.

30 Days of Autism Acceptance: Day 22

Talk about autism parents. How do you feel about this section of the community? Do you feel as if they speak over you? Do you find the term ‘autism parent’ rude or offensive?

I find the term ‘autism parent’ rude and misleading. There is no such thing as an autism parent, you cannot parent a neurotype. The proper term would be parent to an autistic child. I’ve tried to argue my point about this but the majority of ‘autism parents’ don’t listen.

I’m kind of iffy about whether these people even belong in the community. They are not autistic themselves so they can’t and shouldn’t be speaking for us. I guess I would class them more as sort of visitor. They are welcome to come and observe and interact with us and to gather information or advice but they shouldn’t be inserting their opinion about what’s best for us or how we should behave. They’re a tourist not a resident, they don’t get to speak as to the autistic experience.

A common situation I’ve come across with these people is that they ask for advice and then jump all over when you say something they don’t like. ‘Why is my child doing this?’ and then when I try to explain the autistic thought process behind why their child may be doing it, they tell me I couldn’t possibly understand. Or that ‘my child is nothing like you’ ‘I know my child better than you; how can you say that’s what he’s thinking.’ While obviously, I don’t know the exact situation and I’ll never know as much about a child as the parent, I do know what it’s like to be autistic and the thought process behind our actions. Some of the stuff they ask about is stuff that I’ve done but when I try to tell them they ignore it or tell me I don’t understand. It’s incredibly rude. I’ve come to the conclusion that 95% of the time when they’re asking for advice what they really want is either pity or admiration.