Family Reunion 2017 - The Ride Down

Mom, Dad, Grandma, and I packed up and left Saturday morning, stayed the night in Lebanon, Missouri and reached our destination at 5pm Sunday.  We had a long but interesting drive down.

We drove past the Gateway Arch in St. Luis.  Which I had apparently been to before but I don't remember so it was basically my first time seeing it.

We stopped off at the interesting attraction/shop.  We'd been seeing the billboards for miles and were intrigued.  I bought some fudge and they got some moonshine and a t-shirt for my uncle.  If you're ever in the area, it's worth a quick stop, only about 5 minutes off the highway.

I sent this photo to my friend Theo and he thought it was fake.  Not fake, just hilarious.  

My Cousin The Juvenile Delinquent

A basic introduction to my aunt's family.  My aunt 'Katie' is a lesbian who has been with her partner 'Dina' for 16 years.  They have my cousin Ryker who I've mentioned before and they also adopted two boys.  'Dan' is eleven and has foetal alcohol syndrome and an intellectual disability, pretty much the nicest kid you'll ever meet.  'Don' is ten and has foetal alcohol exposure, prenatal cocaine exposure, ADHD, ODD, and some other things that have yet to be diagnosed.  So suffice to say, he has some problems.  Don is such a handful that I'm one of the only people that will child-mind for them anymore.

Well yesterday I was over there childminding and Don asked if he could go out and play with his friends, I said yes but to come back in an hour to check in and then he'd be able to go back out if he wants.  So he comes back an hour later, I say he can go out for another hour and then he's in for the night.  He leaves and two minutes later, Dan comes and gets me saying Don is in my aunts car.  I go out there and he has indeed locked himself in the car.  I tried talking him out but he wouldn't so I go back in to grab my mobile and phone my aunt, they say they're close and they'll be back in 10ish minutes.  I go back out and tell Don he'd better get in the house before they get back or he'll be in worse trouble.  He then decides he's going to DRIVE THE CAR.  

He backs it up and over a bush right next to the house.  Keeps going back and forth in the driveway for like 5 minutes.  I'm on the phone again to my aunt (freaking out) 'he's driving the car you need to get home RIGHT NOW!'  He stops the car pretty much in the middle of the driveway.  I again try to get him out, telling him his parents are on the way and it'd be easier for him if he just out out now.  He starts wailing 'don't call don't call,' and starts driving again.  Ends up crashing into the garage door, leaving a big dent.  The car is now in roughly the position it started in.  He finally gets out of the car.  Does a hulk like pose and screams "I just drove a car!"  

I drag him into the house, make him hand over the keys and then try to get him to his room.  Again I tell him he'd best listen and his parents are on the way and he'd better be in his room when they get back.  He starts screaming and runs to the phone to try and call them.  They don't answer, he tries two more times and then shoves the phone off the counter.  Starts running all over the place.  My aunts finally get back.  He runs out and meets them in the driveway.  My aunt is looking over her car, it's all scratched up, the bumper in loose.  "Don what happened?!"  "I didn't do anything.  It was already like that."  Cause she's going to believe that.  "Get. In The. House. Now."  He hops on his bike and rides off.  Dina jumps into the van and takes off after him.  My aunt has Dan fetch Don's new PS3 controller and smashes apart with a hammer.  We go into the house and I tell her what happened.  Dina shows back up saying she couldn't find him.  They discuss calling the police and eventually decide to go back out and look for him.  So they leave, Dan and I are hanging out seeing if Don'll come back to the house.

Ten minutes later my aunt comes in dragging Don by his neck/shirt.  I stand there awkwardly there while she spanks him and then puts him on the couch.  I say I'm gonna go and my aunt asks how much she owes me.  I say don't worry about it and leave.  I go outside and Dina is sitting on their front lawn.  WTF.  I ask what's going on and she explains that Don knocked her over.  I help her up and she asked if I was paid.  I say no but it was fine and not to worry about it.  She insists on paying me the $10.  I go home and tell my parents about my exciting evening.  

So yeah, I certainly had an interesting time yesterday.  I don't know what they're going to do with him.  He's always in trouble, always.  Ten years old he's been expelled from 5 different schools, keeps sneaking out at night, already tried to set the house on fire.  They keep having to call the police.  Police don't do anything, his doctors don't do anything it's only a matter of time before he ends up in juvenile hall.  

Plasma Donating

As ya'll know I'm unemployed and waiting on disability and lately I've gotten particularly tired of being perpetually broke so I started donating plasma.  I've no problem with needles and have a lot of free time so it's a decent way to make $60 a week.  I've been going since mid May and overall it goes decently.  There have been a few issues.  

Like the fact that I have 'bad' veins and only one person there 'Trish' has managed to successfully stick me, so until the people realized that, I had to deal with what seemed like every person in the office unsuccessfully digging the needle around in my arms.  Mostly that's stopped (except the time I went in and Trish wasn't working, which actually kind of worked out because if they stick you and can't get the vein, you get to leave but they still pay you full price) and the people know to just have Trish do the poking.  She doesn't always manage to get it on the first arm but she's still better than everyone else who can't get it at all.

And there were the times I felt really poorly and they had to stop the machine to fan me and give me something to drink.  One of the times that happened the machine didn't start back up properly and I didn't end up finishing the donation.  Plus because the machine wasn't working they were unable to return a fair amount of my blood which I'm sure contributed to the horrible cold I came down with 4 days later.  Once 'Shae' said I turned so white she thought I was going to turn into a piece of chalk, which was rather amusing.  

And of course there was the first day I went in, which took SIX AND A HALF HOURS and I didn't even get to donate.  It took forever to get me set up in the system and then when I finally got to the back, the guy that stuck me fucked it up so bad that I couldn't donate for a week.  He stuck the needle in and I just immediately got a huge bruise.  I don't know what the fuck he did because I've had like 10 different people poke me since then and that hasn't happened again.

Yeah, but other than all of that it's been going pretty well.  I managed to save all the money I need for the family reunion (which is the week of the 16th and I will definitely post about when I get back) and I even had extra to buy some books and stim toys and to help out an acquaintance.  Here is their fundraiser if you'd like to help out.

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.

30 Days of Autism Acceptance: Day 21

Talk about comorbid conditions. Do you have any other disorders commonly related to autism? Were you misdiagnosed as something else first?

I’ve been seeing doctors/psychiatrists since I was 3 when my mom took me to the doctor because I was ridiculously hyper. They like to tell the story of me literally climbing up the wall and then running around the room on the little edge/crowning thing that was midway up the wall. And that was when I received my first diagnosis: ADHD. Over the next 20 years I received or had been tested for a multitude of things. The diagnoses I received were ADHD, ODD, depression/dysthymia, GAD, social phobias and panic disorder. At one point I was also tested for OCD and bipolar disorder but they were inclusive.

I would agree with all of my diagnoses except perhaps ODD. I think a lot of the behavior that was interpreted as defiance could have been symptoms of my autism. Looking at the symptoms of ODD a lot of them overlap. Things like refusal to comply with instructions may have been me misunderstanding the directions. Or being deliberately annoying could be explained by my lack of social skills, I may not have even known what I was doing was bothering them, or if I did register they were irritated I wouldn’t have known why or how to modify my behavior. Stubbornness/inability to compromise can be summed up by my inability to adapt to change. I need to do things my way, it’s not just a want or me being difficult; I become agitated and confused when presented with an alternate instruction or change of plans.

I wouldn’t for sure say I was misdiagnosed with anything but I think it obvious that the doctors didn’t do as well as they could have in trying to categorize all my symptoms. With the diagnoses, I had before I got my autism diagnosis, yes some of the symptoms do overlap but there are quite a few that don’t and no one really tried to find something that would cover all of them. One would think with all the people I saw and was evaluated by someone would have suggested autism but apparently not. If I hadn’t pushed for a diagnosis I doubt anyone else would have brought it up as a possibility.

30 Days of Autism Acceptance Day 20

Talk about communication.  Are you verbal? Nonverbal? Partially verbal?  How do you usually communicate?

I was a late talker; my mother says I didn’t start speaking until I was four but that once I started I spoke normally and never stopped.  From what she described I’ve come to the realization that I must have had, at least briefly, some sort of impediment regarding certain sounds.  Specifically, those with the ‘or’ sound which I would pronounce as ‘air’.  So morning was mair-ning, door was dair, four was fair.  Apparently I would have arguments with my grandfather to shut the dair and that I was fair years old while he would argue the correct pronunciation.

For the most part I am verbal and don’t generally have any trouble communicating through speech.  However, on some occasions, usually when I’m really stressed, I cannot talk.  It’s like the words are there but I can’t get my mouth to cooperate enough to say them.  I guess I could classify these instances as nonverbal episodes though I’m inclined to believe they are tied more into my social anxiety than my autism.

30 Days of Autism Acceptance Day 19

Talk about your struggles and strengths.  What things are difficult for you because you are autistic?  What are the positives of being autistic?  Do you have a special skill or talent?

I would say that for me, social interaction is definitely the thing I struggle with most in regards to my autism.  I’ve still not totally got the hang of how to be social and often have trouble with conversations, even with my parents and close relatives.  My mother says that it feels as if I don’t have I conversation so much as make statements.  I can never think of what to talk about and essentially end up repeating the same scripts every day.  It’s also really hard when things go off schedule, I don’t exactly have a set schedule but plans changing at the last minute or being told to do things in a different way is incredibly stressful.

The sensory processing issues I have are, I suppose, both a positive and negative.  It sucks to have such strong aversions to things but at the same times the good sensory input is amazing.  So maybe I’ll never be able to prepare raw chicken by myself but the joy I get from touching soft things and burrowing under my weighted blanket kind of makes up for.  It seems that NTs don’t get to experience things as intensely as we do, I think that’s kind of sad. 

Positives are being able to experience the world in a different way, it’s cool to be able to experience the world in a way outside of the norm.  It actually seems like it’d be quite boring to be NT.  I can’t imagine it would be enjoyable having to conform in the way that they do, at least with being autistic I have a reason for being odd.  Special interests are definitely a positive (provided they are something appropriate). It’s so easy for me to absorb all the information about a special interest, like you can be an overnight ‘expert’ on whatever you’re into which is pretty cool.  I don’t really think NTs have the same ability to do that, at least not to the extent that autistic people can.

I don’t really have a special talent per se, but I do seem to be an exceptionally strong writer.  Most of my talent seems to be centered around language/linguistics.  I excel at word based subjects such as English and history and I love reading.  

30 Days of Autism Acceptance: Day 18

Talk about functioning labels. What is your opinion about functioning labels? Where are you on the spectrum? If you don’t like functioning labels how would you describe your functioning ability?

I think functioning labels are rude and inaccurate. They are a way to dismiss the needs of the ‘high functioning’ and dismiss the abilities of the ‘low functioning.’ Saying a person is high or low functioning doesn’t actually provide any information as every person has a mix of functioning ability that could vary depending on the day or task.

As a whole, I’m pretty functional. I can speak verbally and have mastered all the basic selfcare skills such as washing, eating, dressing. But just because I can do these things most of the time doesn’t mean I can do them all of the time, or in every situation. At home I can speak easily and coherently to my parents and close relatives, while to other people or out in public I may not be able to talk at all or I may be less articulate. And while most of the time I don’t have any problem showering or making something to eat there are other times when I can’t manage to take a shower properly if at all or I will sit there and be hungry because I can’t make myself something to eat. There are days when I’m not able to leave the house (at least not in a presentable manner) because I haven’t been able to wash my clothes. So, while I am capable of doing these simple tasks I cannot always do them in a reliable manner and this excludes me, at least at the present time, from living independently.

30 Days of Autism Acceptance: Day 17

Talk about empathy. Many people think autistics do not have empathy. What’s your experience with empathy? Are you hyper empathic or not empathic at all?

I feel that I’m both hyper and hypo empathetic, or perhaps just appear to be hypo empathetic. It really depends on the situation. I’m pretty high on emotional empathy while low on cognitive empathy.
I am more hypo empathetic in the context of cognitive empathy. I never really got the whole seeing something from someone else’s perspective. I’m not them, how am I supposed to know how someone else feels in regards to a situation. If they explain it, I can usually understand on a logical level why they are upset but I don’t really feel any emotion towards it.

Regarding emotional empathy I’m hyper empathetic to the things I’m passionate about but I don’t or can’t feel much empathy towards other things. I can register on a logical level that something is sad or upsetting but I don’t have much emotion for it. I think part of it is that I can’t/don’t allow myself to feel the emotions. It takes too much of a toll to let myself feel too many things and I have to sort of filter out what I can’t deal with. I believe this is why I can be super upset and crying over a fictional book/show I’m invested in but have nearly no reaction to hearing about a real world bombing or shooting. I kind of keep myself together by shutting out the things I can’t deal with, which is why I can appear cold and emotionless. I do have a lot of empathy towards things but I can’t allow myself to feel it or I would be perpetually upset.

30 Days of Autism Acceptance: Day 16

Talk about treatment.  Have you been through any therapies?  What ones did you like?  Which ones didn’t you like?  Do you think autistic people need therapy for their autism?

As I was only diagnosed in 2014, I have not had and therapy specifically for my autism. I have been in therapy/treatment since the age of four when I got my ADHD diagnosis.  Since then a string of other disorders has been diagnosed, some of which I’m still being treated for.  I’ll talk more about my other diagnoses on the 21st.

I’m currently in counselling, which I like.  It’s nice to be able to talk to someone about my problems.  My therapist is good though I’m still not really used to her.  My previous therapist left about a year ago, I was with her for 10 years.  It was upsetting and I’ve still not really adjusted to this new person.  She’s good though, helping me work through some issues I have with my anxiety/depression and transness.  I also see a psychiatrist, who prescribes meds for dealing with my depression and anxiety.

When I was younger I had both play and art therapy, which I think were okay.  I’m not sure how much they helped but I didn’t have any negative experiences with it and it didn’t really feel like therapy, so I guess that’s good.  When I was in my early teens I went through a several sessions of group therapy for social skills training.  I don’t really remember much about it and I doubt it increased my social skills but it wasn’t bad or anything.  Right before I received my autism diagnosis I also attended I think like 2 sessions with a psychologist which I quickly realized was not for me.  All kinds of weird questions about how I was feeling and what made me sad.  It was pretty much the classic ‘and how does that make you feel’ situation.  I just found the whole thing kind of bizarre and didn’t go back.  

Overall I don’t really think autistic people need therapy for being autistic, we may however benefit from therapy for certain symptoms of our autism e.g. speech or occupational therapy.  Any therapy we get should be with the goal of helping us learn coping skills and how to succeed; therapy should not be forced assimilation to the neurotypical world such as with ABA.

30 Days of Autism Acceptance: Day 15

Talk about identity. How do you identify? Autistic? Asperger’s? Person with Autism? What’s your take on person/identity first language?

I identify as autistic, my official diagnosis is Autism Spectrum Disorder level 1/Asperger’s. For some reason both diagnoses are mentioned on my paperwork. And it’s even further confused by the fact that the doctor who evaluated me said if I had been diagnosed before the DSM5 I would most likely have been diagnosed with high functioning autism. I’m still not really clear on the distinction between Asperger’s and high functioning autism though I believe the only real difference was that HFA presents with a speech delay while Asperger’s doesn’t. I guess it’s kind of irrelevant now anyway since it’s all been combined. So yeah, I just identify as autistic.

I greatly prefer identity first language (IFL). My autism is a part of me; it’s not an accessory to be added or removed at will. Autism is a central part of my identity, it makes me who I am. It’s my neurology. Saying person with autism implies that the autism is somehow separate, that can be taken out, or that it’s temporary. I don’t like the similarity in phrasing to things like ‘I have a cold’ or ‘I have cancer.’ Autism is a harmless difference in the brain, not a disease. I am autistic, it is not a negative attribute, it’s a statement of fact. Autistic is something I am not something I have.

In my experience, the people who prefer person first are the people who view autism as something inherently negative. They’re also the people who use phrases like ‘suffers from autism.’ The argument for person first language (PFL) is to stress our humanity and that first and foremost we are people. But why do you need to remind yourself that we are people? Do you forget? Person first language isn’t used in reference to other things. Women are not people with femaleness. White people are not people with whiteness or people who are Caucasian. Redheads are not called people with hair that is red. So why do people refer to autism this way? And it’s not the autistic people who prefer this phrasing; it’s the parents. Because they want to think that somewhere hiding behind the autism is a typical child. That if they could take the autism out their child would be normal. Using PFL is a way to separate the autism from the person so that it becomes a theoretical concept. Which in turn opens the door to people saying things like ‘I love my son but I hate his autism.’ How exactly does that work? Your son is autistic, the autism shapes his behavior and who he is, there is no typical child underneath the autism.

30 Days of Autism Acceptance: Day 14

Talk about role models. Who are your role models? How have they influenced you?

A short post for today as I don’t really get the whole role model thing. I think John Elder Robison is an excellent autistic role model. His books ‘Look Me in the Eye’ and ‘Be Different’ were some of the first I read after I received my diagnosis. It kind of reinforced the idea that there’s nothing wrong with being autistic, I wasn’t broken or defective. He’s a strong autism advocate. Tried (unsuccessfully) to remodel autism speaks. He’s a pretty successful person; husband, father, owns his own business, published four books. I think that’s quite an accomplishment.

Some other people I admire are Chase Ross, Laverne Cox, Temple Grandin, Emma Watson. I wouldn’t really say any of these people have influenced me though. I just think they’re decent people.

Do Be You

And here is the sister poem to Don't Be. This one is called Do Be You. 

It is possible

To be who you are

And stay the same

Even if you have to change 

To be you

You may

Cut your hair

Or grow it out

You may

Stop shaving

Or start

You may 

Buy a packer

Or a gaff

You may

Start on T

Or E

You may

Change your clothes

Change your name

Change your pronouns

Change your body

If you want

And you should

Do what you want

Do what makes you happy

Do be you

Don't Be

As I've mentioned pretty much every year since I started this blog, April is National Poetry Month and as per the norm I shall be posting a few of my poems.

Here's a poem I wrote last month for trans days of visibility.  Which I stopped doing (obviously) as I kind of got distracted by putting together my own campaign (which I shall be adding soon) but I may go still do some of the prompts and back date them, of which I will make a note if I do.  Anyway here's my poem, I titled it Don't Be. 

This body I am in

Is not my own

It does not belong to me

There has been

A horrible mistake

And because of this mistake

I must endure

People thinking of me

And referring to me

As something I am not

It saddens me

And it angers me

And I want to scream

But I don't

I don't do anything

Don't draw attention

Don't correct people

Don't cause a scene

Don't be different

Don't make people uncomfortable

Don't be yourself

All these rules

Needed to survive

Seem to say

Don't be happy

30 Days of Autism Acceptance: Day 13

Talk about something funny.  Has anything humorous or ironic ever happened to you because you were autistic?

Not really all that funny but since it’s kind of poking fun at a rude NT I find it rather amusing.  This was just the other day actually.  She had commented on an autism related video on Facebook about how autism is a horrible disorder.  And I replied that it wasn’t and if that was how she felt, she was part of the problem. Her response was to ask me if I’d ever actually interacted with a person with autism because if I had, I’d know what she was talking about because apparently we’re really difficult.  I of course replied that I am autistic.  And interestingly enough, when I went back a few minutes later to see if she had responded, she had deleted the entire conversation.  I guess she didn’t want to look like a fool.  

Here’s another story from when I was little, I had apparently never heard the term punching so I came up with my own term ‘hand-kicking’ which my parents found adorable and didn’t correct me on.  I think it wasn’t until the second or third grade that I found out hand-kicking isn’t a thing.  

I personally am partial to dry humor.  For my jokes I usually rely on wordplay or I often make blunt statement that can be somewhat amusing (though I often don’t immediately get why).  Some recent interactions include:

Grandma (who is legally blind): These windows are filthy. I can’t see a thing out of them.
Me: Well you can’t really see anything to begin with so…

A while ago, basically my entire family was out for my cousin’s birthday.  We had already been there for two hours and by that point I and very restless to leave, I semi-quietly announced to my grandmother and aunt that we had to leave because my dad was ‘having some problems with his bowels’ (note that he wasn’t at the time though it’s common for him to announce his toileting habits so a statement like this wouldn’t be out of the norm). Dad found this hilarious but also told me to never say this again.  This has kind of become our go to phrase for when we want to get out of something.  ‘Sorry I can’t help you with those dishes Ma, I’m having some problems with my bowels.’

30 Days of Autism Acceptance: Day 12

Talk about ableism. Have you experienced discrimination? Have you been the target of hate speech or slurs? Have you been a victim of abuse or violence? What’s the rudest thing someone has said to you about autism or you being autistic?

I’ve not really experienced any discrimination for being autistic (mostly my discrimination has been in reference to my gender or lack of religion) as until recently no one knew I was autistic. I can’t really recall any specific instances but looking back I certainly seemed to be treated differently or looked down upon for behaviors that I now realize are related to my autism. Thankfully I’ve not physically harassed or anything. Please don't ever say any of the following things to an autistic person.

I’ve received ableist comments online and in person when revealing that I’m autistic. Comments like:

• “No way you’re autistic, you’re nothing like my child.” Your child is four years old and I’m in my 20's so how do you know I wasn’t like that? You cannot base your very young child’s future ability based on their current functioning ability. 
• “Autistic? So that’s like retarded, right?” No, no it’s not and you shouldn’t really be saying that. 
• “You know you can cure that with (insert random diet or treatment).” Uh, no you can’t. And nor would I want to.
• “Where is your mommy or daddy?” I’m in my 20s, thanks. I don’t need my parents to go to the store; I’m quite capable of doing this task on my own.

And then there’s always the well-meaning but insulting comments:

• “You must be very high functioning.” Functioning labels are rude and inaccurate.
• “I’m sorry.” Why? I’m not. There’s nothing wrong with being autistic.
• “Oh really? You seem so normal. Are you sure?” Just because I don’t fit your very narrow definition of autism doesn’t mean I am not autistic.
• “Everyone is a little autistic.” No, they are not. Because if everyone was autistic, autism would not be a thing.

And then sometimes I get really weird or somewhat amusing comments:

• “Does this mean you’re really good at math?” No, in fact I’m in remedial math classes.
• “Can you have sex?” I don’t know what would possess someone to ask this to a person they’ve just met but it’s surprisingly common. When I get this question I usually just end the conversation. 
• “So, have you heard of Temple Grandin?” Yes, pretty much every time I tell people I’m autistic they bring this up.
• “Do you like the show Blue’s Clues?” Yeah, I used to when I was about 6. I’ve got this question a few times. I’m still not totally sure why people think because I’m autistic I must enjoy watching blue’s clues.

30 Days of Autism Acceptance: Day 11

Talk about sensory issues. Do you also have sensory processing disorder? What kind of clothes do you wear? What foods do you eat? Are you sensitive to light or sounds? How do you deal with overstimulation?

While I don’t have sensory processing disorder, I do have quite a few sensory issues.

I prefer soft baggy clothes, usually in cotton. I can’t stand things with a scratchy texture and I usually rip the tags out of my shirts if they have them. Though lately it seems like a lot of companies are now just stamping the tag directly into the shirt which is nice. I usually wear jeans or cargo pants (cargo shorts in summer) and t-shirts. I generally prefer short sleeves and being able to don a jacket than to wear long sleeves. The exception to this is a couple sweaters I have (I have three of the same sweater in different colours). They’re pretty much the most comfy thing ever and I wear them all the time.

Food wise things with a pudding-like texture such as oatmeal or applesauce often make me gag, which sucks as I do like the taste of pudding and applesauce. I can eat these sometimes if I’m having a good day and others just the thought makes me cringe. Onions, are a big issue. Onion powder or very, very finely diced onions are okay but I cannot stand to eat anything with noticeable chunks of onion in it. I have a difficult time trying new foods and generally stick to eating the same things every week.

Generally, it seems like everything is too loud. People talk loud, cars are loud, people sitting in class are loud; it’s very annoying and distracting. Movies theaters are awful sound wise, I don’t know why they have to have it so blaringly loud that it’s painful. I’ve taken to bringing my earmuffs with me to help muffle the noise. Interestingly I quite like loud self-controlled noise or music, I guess because I have the option to turn it down/off if it gets irritating. I find fluorescent lights are super irritating, ridiculously bright and they flicker and hum and really grate on my nerves. To combat this I often wear sunglasses when in public buildings, it also has the bonus of blocking eye-contact.

My mother says when I was little, I was pretty much a near constant toe-walker. They used to call me their ‘little ballerina.’ I’ve mostly stopped this and can walk pretty normally, though I’ve been told I have an odd gait. I do still have a habit of going on my toes if I’m excited or stressed. I try not to do it too often though as it has a tendency to make my calves tight feeling afterwards.

The thought or feel of fabric running across my teeth is horrifying and makes me super uncomfortable. Having my mouth packed with gauze after I got my wisdom teeth out was awful and I think that’s where this issue started. Also a similar sensation is triggered when the tips of my fingers run over the rough side of the sponge when doing dishes and it’s awful then as well.

Pressure wise I seem to be hyposensitive. As mentioned before, I love deep pressure with my weighted blankets. One of my favorite thing is burrowing down into a pile of heavy, fluffy blankets.

A specific sensory aversion that i have to deal with every day is a certain set of silverware my mother bought. Not sure if a result of sensory issues or my inability to adapt to change, I’m guessing the former, as since this happened we’ve gotten an additional set of silverware that I don’t have an issue with. A few years ago we got this new set of silverware because we kept running out of forks. These new forks are weighted differently and they’re a bit thinner about the stem. In the beginning I complained endlessly about how they were wrong. They were too light, and the weight was distributed differently. The stem was too thin. They just feel wrong, I can’t use them. My mother of course has no idea what I keep complaining about and insists they’re nearly identical. But they’re not. These forks are absolutely awful and I still refuse to use them, I’d rather use a spoon or wash the dirty forks before I use these ones.

To cope with sensory overload when I’m out and about I usually have a bunch of stim toys for me to try and distract myself with. I also like to listen to a metronome or ASMR videos. When overstimulated at home I hang out in my closet. It’s under the stairs and when I was little I used to hide in there and pretend I was harry potter. I turned it into a sort on mini sensory room. I put a small TV in there along with all my old Disney VHS tapes. Disney is always a good way for me to decompress. I have a bunch of light up things such as a fiber optic fan light, and a little bunny and police light; I hooked up a blacklight to the ceiling which is really cool. I keep my box of kinetic sand and a bunch of stim toys in there. I also have a futon mattress and a ton of pillows, blankets and, stuffed animals. It’s so nice and soft and comfy; a good place to calm down.

30 Days of Autism Acceptance: Day 10 Prompt 2

Talk about stimming. Do you stim? How? What are your favorite stims? Do you have different stims for when you are happy or agitated?

Stimming, short for self-stimulatory behavior, is the most commonly accepted word for autism specific fidgeting. Stimming is a way for autistic people to self regulate, it helps us to manage anxiety, regulate emotions and, block out or provide sensory input.

Here’s my haiku I wrote for the stimtastic giveaway a few days ago
Stim, don’t stop stimming
Arms flap, body rocks, feet bounce
Never stop stimming

Stimming is basically the best thing ever. I stim all the time in one way or another. Generally, I never stop moving, I’ll bounce my legs or rock or rotate my shoulders. Sometimes I hum or listen to a metronome. I have a ton of stim toys. A whole 20 gallon bucket full of tangles, stress balls, klixxs, puffer balls, spikey animals, boinks, pop tubes, the fidget cube, chewies. Outside of rocking, chewing is my favorite stim. I will chew on nearly anything, except fabric which I have a horrible sensory reaction to.

When I was little I used to bite my nails and chew off the skin around my fingers until they bled and my fingers were always sore and horrible looking. I finally managed to stop though I’m still prone to chewing my fingers if I’m stressed and not paying attention. I was so happy to learn that oral sensory seeking is a common autistic thing and that they have special safe things to chew on. I used to chew on pretty much anything; metal, wood, plastic, paper. My favorites (which I do still chew on when I come across them) were the little plastic pieces that attached tags to clothes, straws and, the little orange juice sealer thing that was used to seal the cartons. It used to be great at work because we had entire strips of plastic clothing tags, I didn’t really take very many (maybe 7 or 8 in the entire time I worked there) as it was easy enough to find loose tags all over the place. I used to get nervous or bored and pick things up off the floor to chew on, which I’m sure was horribly unsanitary. I’ve been told I have a distinctive look that I get when debating whether I should put something into my mouth. Thankfully now that I have some proper chew toys my propensity to chew on random items has gone down.

Another stim, which endlessly annoyed my parents, was my habit off tearing off tiny bits of paper and rolling and rerolling it until the paper basically disintegrated or I dropped it on the floor and was unable to find again. My bedroom and the living room was always littered with tiny bits of paper. For the most part this has stopped now that I have proper stim toys, though if I’m sitting somewhere without one I’m still prone to start tearing up paper.

I have a few vocal/echolalial stims. When I had my dog it was ‘Nicky Nicky Nicky’ which I would say all the time. When he died, I would catch myself saying it for months afterword and I couldn’t figure out why I felt compelled to keep saying it, it was like I couldn’t stop. It took me ages before I was able to force myself to stop. Lately I’ve taken to making a ‘chih chih chih’ noise or saying ‘bah bah bah bah bologna’ (this annoying 2 second jingle from Psych which I can’t get out of my head).

I also love weighted things and deep pressure stimming. I have several weighted toys and blankets. I love my little crow and pentapus and smol bean. I really like to have some pressure on me when I’m sleeping, before I found out weighted blankets were a thing I used to sleep with about 12 blankets on my bed; two comforters, a quilt, a heavy fleece blanket, and as many throw blankets as I could find. It was ridiculously hot and it always took forever to wash my bedding. Now I sleep with a quilt or comforter and a weighted blanket. I have two weighted blankets. A smaller, softer, lighter one made by Isaac from autistic rabbit on etsy. It’s a great blanket and just the right size for traveling or for if its warmer out. I also have a larger, comforter size blanket from sensacalm, which is great but I only really get to use it in the winter as it gets really hot due to the polyfill. I love cocooning myself into the blankets. It’s always so nice and warm and safe feeling. When it’s too hot for the blankets I like to pile them up next to me to make a little wall to snuggle into, I have the actually wall on one side and my blanket wall on the other, it’s so nice and cozy.

I don’t really think my stimming differs when I’m happy or agitated. I don’t have specific happy stims or anything. I would say the only thing that changed would be the intensity. I rock most of the time anyway but it gets a bit faster and more aggressive when I’m agitated. And I have a tendency to hum a bit more and more loudly.

30 Days of Autism Acceptance: Day 10 Prompt 1

Talk about a cure. What is your opinion about seeking a cure for autism? Do you want a cure? Why or why not?

I don’t think we need a cure, and certainly not if it is through eugenics. I know I don’t want one. Saying that there needs to be a cure for autism is saying that autistic people are not fine the way they are. Autism is not a disease, it does not make a person sickly or of poor health, it’s just a different way of being. Saying we need a cure is saying we’re broken or defective; we’re not. Autistic people need proper therapy and support to allow us to reach our potential; we need people to be more accepting and accommodating. We do not need to be made neurotypical for the convenience of others. I do not need to change who I am at a fundamental level to make NTs (neurotypical means a person who is neurologically typical, i.e. no mental or developmental disorders) and allistics (non-autistic but not neurotypical, i.e. has some sort of mental or developmental disorder) more comfortable. Sure, autism can and does make things more difficult, but that’s mostly due to the lack of accommodations. Autism is a part of me, an important part of my identity, I wouldn’t want to not be autistic. My autism is a gift. I get to experience the world in a way that not many people do, only an ignorant buffoon would view that as a negative thing needing to be fixed.

30 Days of Autism Acceptance: Day 9 Prompt 2

Talk about special interests. Do you have a special interest? What is it? Feel free to infodump.

Before I knew I was autistic and realized that special interests are common with us, people (including myself) thought it was a little weird that I had such intense obsessions. Others didn’t seem to be as fixated about things as I was and it made me stand out a bit when I wouldn’t stop talking about roman mythology or homeless people, or whatever my interest at the time was. Finding out I was autistic and that this was normal for us really helped me to realize that my obsessions were okay and I wasn’t weird for having them.

For as long as I can remember I've always had an obsession with one thing or another. Sometimes they were normal and age appropriate (Scooby Doo, Harry Potter, the TV show LOST) and sometimes they weren't (homeless people, prosthetic limbs, my 55-year-old boss.) They usually last a few years before they disappear, usually when there is nothing more to be learned on the subject or a new interest develops. Some of are a bit more awkward than others; such as my homeless person fixation. Which my parents found endlessly annoying because apparently a 10-year-old who talks about nothing but homeless people is embarrassing.

Harry Potter/Snape/Alan Rickman has been probably my greatest and longest lasting special interest. There’s such a good community and always unnoticed or additional information to go over. I have several secondary special interests, though right now my love of all things British may be tied with HP for top interest. I’m also really into the Lion Guard (though I love all things Disney the lion guard is most important right now). I also love squirrels. Interesting fact about the fox squirrel, which is the most common squirrel in north America, they range in weight from 1.2 to 2.2 pounds though they can weigh as much as 3.5 in preparation for winter. Another squirrel fact: squirrels are nearly immune to rabies. And my final special interest is the British foster care system (which I suppose would fall under Britain).

I love collecting things relating to my special interests. Which my mother usually yells at me for as she clearly doesn’t understand how much I need these things. I own a bunch of lion guard stuff which my mother says is immature but whatever. The lion king was my favorite thing when I was a kid and I think it’s great that Disney has brought it back for the next generation. I love collecting books in general but I have a bunch of British fostering memoirs. In fact, I just received 6 more books on Tuesday and I’ve actually read them all already. They were so good, I just couldn’t stop even though I should have as I had an important paper to write for school but the books arrived on the day I had to write it and well, I’m not very good at controlling my impulses when it comes to my special interest. I will say that I did manage to get the paper done after I read two of the books (the latest by Cathy Glass and Casey Watson if you’re interested). I also have a ton of Harry Potter stuff. The best of which is a life-size cutout of Snape which is fucking awesome.  Here's some of my Harry Potter collection:

30 Days of Autism Acceptance: Day 9 Prompt 1

Talk about Autism Speaks. Do you support them? What’s your opinion about their policies?

Basically, my opinion of autism speaks is the following: I do not, nor will I ever support autism speaks. They are not a charity they are a hate group. I could never support an organization that claims I’m broken, that claims I am less of a person for being autistic, that claims I am an epidemic. I wish the organization was dismantled and replaced by the Autistic Self Advocacy Network (ASAN). Autism speaks does not and will never speak for me.

Reasons why autism speaks is an awful organization:

• They ignore the opinions of autistic people to focus on the opinions of parents about what it's like to live with autism.
• Until recently autism speaks did not have a single autistic person in a senior leadership position, in the past their only autistic board member quit because of their views
• They have supported dangerous therapies and treatments such as ABA, MMS and the Judge Rotenberg Center.
• Less than 4% of funds raised go to autistic people. Most goes to campaigning and research in a cure.
• The #Mssng campaign because autistic people are somehow missing the parts that make us human.
• They compared being autistic to being kidnapped, or having a fatal disease.
• They sympathize with parents that kill their autistic children.
• Biggest spreader of the misinformation that autism is a childhood disorder that we somehow grow out of.
• The ‘I am autism’ video which makes statements like ‘I will make your marriage fail.’ and ‘I have stolen your children.’

30 Days of Autism Acceptance: Day 8

Talk about traditional media. Have you been influenced by autism themes in the media? Have you had to correct misinformation about autistic people that others got from the media?

I don’t really have a lot to talk about on this subject. In general I don’t think there’s really a whole lot of representation of autistic people in the media. It has gotten better in the last few years but there’s still not enough representation. I’m sure most autistic people have gotten the comparison to rain man or Sheldon Cooper at some point. I’ve got this on multiple occasions and it’s always a bit awkward explaining that ‘No, I’m not like rain man and in fact Kim Peek the guy the movie was based on isn’t even autistic.’ I’d say the only way I’ve really been influenced by the media in relation to my autism is it got me to start rocking. I didn’t used to rock (or if I did I don’t remember) but rocking seems to be one of the main ways autistic people are represented and after trying it out I realized it’s basically the most soothing thing ever.

30 Days of Autism Acceptance: Day 7

Talk about community. How are you treated by your local community? Do you participate in any online communities? How have they reacted to you being autistic?

I guess my local community is okay. Generally I don’t leave the house unless I have to. I only go out for specific reasons and don’t really enjoy ambling about. On average I’d say the local population is decent, there’s always a few creeps and weirdos but generally they’re okay. I don’t really do much in person interaction outside of my family. The only in person communities I regularly interact with is the occasional atheist or LGBT meetups. I suppose school would count as a community but I don’t really talk to people and I don’t hang around there longer than I have to.

The vast majority of my social interaction is done online. I’m in groups for pretty much everything I am. There are plenty of autism, trans/queer, atheist, communities available online. It’s nice to be able to interact with people who are like me. I also participate in groups relating to my hobbies and special interests. I’m lucky that my interests are fairly common, should I desire interaction, there’s usually always someone willing to discuss things.

While I am out as autistic it’s not exactly something that comes up very often. People’s reactions are usually okay. Occasionally I’ll get some ableist comments but I’d say the vast majority of people are decent.

30 Days of Autism Acceptance: Day 6

Talk about music, art, writing, and other forms of creativity. Are you a creative person? What do you create? Do you include autistic themes in your creations? Does your creativity help you to deal with your autism?

I’m kind of creative. I can come up with interesting ideas and concepts that are a bit out of the norm but for the most part I think my creativity level is pretty average. I have no musical or artistic talent, My creative talent lies with writing. I love to write poetry and short stories. I also like writing my blog. With my blog, documenting what’s going on helps me to work though and organize everything in my mind. I find writing to be very therapeutic; it has definitely helped me in the past, to get my thoughts together.

Mostly I like writing poetry, I haven’t written anything directly related to being autistic but I have explored themes of being different. Usually my poems are of the sad/depressed variety, I don’t really like to write cheerful poetry.

30 Days of Autism Acceptance: Day 5

Talk about employment and your career. What do you do to support yourself? Are you on disability? Was it hard to get or maintain?

Currently I am an unemployed student. At this point I have a challenging time even keeping up on my schoolwork and I can’t imagine how badly it would go to try to add a job on top of it. I did manage to keep a part-time job for nearly five years before my erratic behavior/autistic burnout resulted in my termination. Ever since I went through my autistic burnout/horrible depression my tolerance for any sort of stress has gone down considerably and I just can’t handle things as well as I used to.

As of now, I can’t work and I’m in the appeal stage of getting on disability. It is such a long and strenuous process. It has been over three years and they continue to deny me. They keep saying that while I have significant impairments and I am disabled, I’m not disabled enough to receive any benefits. This is absolutely ridiculous and I believe the system needs some serious improvements. Getting disability benefits should not be such a hassle.

Thankfully I have great parents who allow me to live with them for free and my wonderful mother is currently covering most of my expenses. I do manage to get some money by doing house/pet/babysitting and my grandmother always gives my some money for helping her out with house cleaning and taking her shopping and to her appointments and things. It’s not much but it’s enough to put petrol in my car and have a bit of an emergency fund for when my car stops working, which happens quite often.

30 Days of Autism Acceptance: Day 4

Talk about your family and support. Who in your life has helped you? Have medical and mental health providers served your needs? Do you feel like your family is supportive of you being autistic?

Generally my family is pretty supportive. They accepted my diagnosis very well and none of them have claimed that I can’t be autistic. They respect that I don’t really like people, or going out, or large groups and they usually let me skip out completely on busy-ish events (weddings, graduations, dinners with extended family). For events hosted at the house, they encourage me to make an appearance, even if only for 15 minutes or so, and then they’re fine with me hiding out in my room. Usually they’re cool with my stimming unless I’m making a lot of noise. The exception is my constant rocking which my mom says ‘drives her up the wall.’

Sometimes my parents get irritated with me about things that I really can’t help. I’m often berated about how I take things too literally or nitpick their use of language. And my mom frequently says things like ‘think!’ or ‘use your brain’ when I ask questions about things they think should be obvious. With me you have to be specific and they still don’t seem to understand that I need specific instructions. Vague statements like ‘the garbage is full’ don’t register with me as a task needing to be done. This is a very common interacton:
Mom: The garbage is full
Me: okay
Mom later: why haven’t you taken out the garbage like I asked?
Me: *confusion ??? Because you never asked me to.
I can’t tell you how long it took me to grasp that this was an instruction and not just an observation. Still, if I’m not really focusing on what they’re saying I’ll miss the hints about things.

Obviously, by the fact that I wasn’t diagnosed until I pushed for it at 22, there has been some oversight by the plethora of doctors and therapists I’ve seen been seeing since I was three. I attribute this partly due to me being AFAB and the reluctance of doctors to diagnosis autism in girls. However, other than my lack of diagnosis my therapists and doctors have been remarkably competent and helpful. I’ll talk more about my therapists/therapy on the 16th and perhaps 21st.