The State of the Autistic Person 2018

As I see it, the State of the Autistic is, well, poor. We have a long way to go. Let’s start with the obvious:

  1. The average life expectancy of the autistic person is 54 years old, even though autism should not affect life expectancy directly. (By contrast, neurotypical lifespan are roughly 80 years in the USA.) 
  2. With other diagnoses, such as epilepsy, life expectancy lowers to 39, even though autism should not directly affect life expectancy. (Again, life expectancy is roughly 80 years for most neurotypical people.) 
  3. Many of these people are murdered and raped by their caregiving families. 
  4. Autistic voices are routinely ignored, just as much, if not more, than female voices.
  5. Almost every autistic woman I know has been raped, molested and/or abused, myself included. 
  6. Almost everyone I know with autism has either no job or a low-paying job. 
  7. I myself am on disability payments to live and take care of my mother with. 

 This is a bleak picture which I do not see changing, because nobody will listen to autistic adults. Autistic adults are often treated like they do not exist, even by parents of autistic children. If they can, they are expected to be neurotypical. If not, they are locked away in institutions. How is this fair to autistic people?  

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Looking Back? I’d Rather Look Forward.

It’s almost 2018. While people are looking back, I’m looking forward.I’d rather look forward. It’s a shame that I have very little good to look back on. Congress and the President care little about non-millionaire people. There’s crippling debt. There’s crippling racism. My family will not get back together in the near future. And Judith Newman and Donald Trump put their fingers in their ears and scream “LA LA LA LA LA….” when hearing autistic people, because they do not agree with them.

My main question is: When did willful ignorance become a virtue?

How Christmas Went This Year

After a day of rest, I have enough energy to talk about how I dealt with Christmas.

I don’t really have any more tips, other than know your autistic relative.

Christmas Eve was basically spending an evening at my cousin’s place for food, family and fun. The funny thing is, it was almost entirely about vegetable casseroles, almost all of which I like very much. Off topic, it’s funny how I have come to like vegetables as an adult, even after thinking I would never like them as a child. Somehow, trying new things and culinary adventure came to include veggies in adulthood. Sometimes, one just needs to bite the bullet and try it. There’s no shortcuts to that one. We also got games, good family talking and even some quiet times, too. It was great. I was disappointed in one factor, though; I wanted to talk to the parents of an autistic relative of mine. He’s a young boy, but I would like to have a talk with his parents, you know, to provide some perspective. But they were not there. I was not exactly going to grill them or provide lectures, but it helps when you’re not alone in a family, as I have so often felt.

Christmas Day was a little different. We invited a couple who had just gotten together, but the man in the two was a friend, so it was alright. Much of the food was on my shoulders, but it was very easy. We had Prime Rib, steamed vegetables, rice pilaf, rolls and a salad, plus cheesecake for dessert. It’s not easy to screw up Prime Rib. Twenty minutes at a high temperature and then 25 minutes per pound. It was done within three hours, resting included. That was the hardest part of the meal. I mean, rice pilaf is very easy from the boxes, and I’ve done rolls many times for Thanksgiving. So, easy meal, good food, good friends, and an overall nice time. It started to get very cold when the day was done, so we had to get them home early. We had a nice time, with blocks of quiet book ending the day. Could not have asked for more.  

Battlestar Galactica and Idioms

CW: Swearing References 

There was a sketch on “Robot Chicken” some years ago depicting the various FCC dodges on the Battlestar Galactica remake. It was made pretty obvious that the characters were swearing their guts out with alternative swear words, but the punchline was the FCC censor’s reaction: “What the [BEEP] were they talking about?” Yeah, it’s funny. It also made me feel for the FCC censor. I’ll tell you why. 

It took me until late in middle school to understand most idioms. Idioms, for those who don’t know, are general sayings that mean something else. For an autistic, that can be confusing. It’s just about as confusing as the dialogue on the new Battlestar Galactica. But the teacher of my advanced English class decided to teach us about idioms – and the explanations of popular idioms at the time. I struggle with the idioms of the younger generations, but once somebody tells me what they’re talking about, I can understand, and even better, use it well. Take, for example, “riding dirty.” There’s a song which uses this idiom over and over, but never tells you what it means.  It means having drugs in the car. I don’t know if they use it anymore, but it’s an example. Yes, I’m showing my age, but at least I try to understand younger adults and what they’re saying. 

I’m not complaining about something random for no reason. I’m saying that an autistic person can get something as confusing as idioms, if you take the time to teach them.  

More Holiday Tips

 

What else can I say about Holiday décor and bustle? Here are a few tips I have picked up along the way: 

  1. Keep It Simple. You may have to avoid things like putting up a tree until they can handle it better, or ever, but keep the decorations simple. I know that by looking at my house, you may not see this tip in place, but it is there. We have picked a simple color scheme and stuck to it.
  2. Tradition, Please. Now, I’m pretty sure that whatever level you have the decorations and bustle at, be sure that all the traditional elements will be noticed. This one is better kept in my arena. All the decorations I have up are tradition – a fancy word for Christmas Routine. We put up the tree, put out the Nativity (we’re Christian), decorate the main areas of the house, and it’s all now routine to me.
  3. Keep. The. Routine. The Christmas Tradition is all a routine you keep, stretched out over a time span of about a month, depending on your holidays. Now, I’m going to talk about routine a little more, because it’s a comfort for us autistic people. The upset routine is upsetting. To us autistic people, it’s like saying sheep have wool, but it somehow seems to get lost on non-autistic people. It’s like a child who has naps about midday not having his midday nap. We get cranky and upset.
  4. Have a Refuge Ready. A refuge from all the hustle and bustle is necessary, and has been advocated as a must by autistic advocates since the early days of Temple Grandin. I’m sure my mother finds it weird that I barely talk while we’re in the car going somewhere, even without music. The thing is, it’s a refuge that is portable. Perhaps we autistic people, or our caretakers, need to seek out a refuge for the person, just in case they need to, say, relax the senses for a while.
  5. Try to Empathize. Yeah, yeah, I know the stereotype. Autistic people aren’t supposed to be able to empathize – that is dead wrong. It’s been my experience that non-autistic people lack the empathy unless they actively practice it. Think about it – imagine you are at a loud concert, in front of a throbbing speaker, and imagine that all the time – you may begin to be able to empathize as to what we go through. I beg of you, try to think of what we go through. We’re trying to communicate it. Listen.  

Ableism in Action: “To Siri With Love”

WARNING: Mentions of medical abuse, ableism, and prejudice

*****

I was certain I had nothing to say about a book I never read. The book “To Siri with Love” seems to me biased and anti-autistic, with some thoughts about forced sterilization and not being able to picture having sex without the Benny Hill soundtrack in the mother’s head, for example.

Well, here’s a few statements I jotted down in my journal. Take a look, judge if you must:

*****

Just wondering: how much ableism is “To Siri With Love”? A whole bathtub of ableism, as I have heard. My mother recently told me not to read negative things about autism; trouble is, “To Siri With Love” is one of those things. Saying your son can’t have sex in your head without the Benny Hill soundtrack, that’s ableism. Saying you want to sterilize him by force, that’s ableism. Saying no woman will want him, that’s ableism.

I haven’t talked about it before, because I haven’t read the book. I don’t think I’ll be able to in the near future, unless I rent it electronically. I have a strange feeling that I will be triggered like I used to be in the days of living with my sisters.

I tried to get the book “To Siri With Love” through the library. It was not there. I hear you can only buy it through Amazon. And you can only review it if you can buy it through Amazon. I wanted to come to the book with an open mind, but its mind is so closed that I feel I have to protect myself from Judith Newman.

*****

Unfortunately, I have not read the book, as I have stated before, but it seems the book was not written for me, as Judith Newman actually states. See, I am autistic. I am also a woman who wants to work with autistic people. So, Judith Newman says this book is written for me. Which one is it, Judith? Am I good enough for you or not?

Forgive me, it is a bit rambling, but I am certain the hatred toward people like me will increase based upon “To Siri With Love.”

*****

Here’s the lowdown: I wanted to approach “To Siri with Love” with an open mind, but the author has approached autistic people, including me, with a closed mind. And how am I supposed to respond to that?

Main Things About Holidays/Christmas – Get Ready for More Real Talk!

  1. Stresses of AnticipationNow, the stress of anticipating gifts is one of the main stresses of the Holidays, if you get presents. This often led to what my mother would say, “fighting like this one always fights, crying like this one always cries, and being Cami (me) like I was always being Cami.” In other words, you have to let off steam somehow, or you’ll get some poor behaviors out of your kids.
  2. Sensory Issues Regarding DecorationsHere’s an example of a sensory issue: there was a string of bell-ringing soldiers which would ring Christmas Carols from outside. Now, I never told my mother this, but I hated those bell-ringing soldiers. Not her fault, though. I am pretty sure that I heard those bells three times louder than my neurotypical family members.  There is also a flip side example I can recall: I loved Douglas Fir Trees. They made the perfect Christmas tree, as far as I was concerned. I would run my hands through the branches to stim. One year I did this, I ended up breaking out in hives. From that year on, I had limited access to the Christmas tree. Sometimes, I would have to wear gloves to help put on the ornaments. As an adult with her own views and choices, my mother and I decided to give reusable Christmas Trees a try. So far, the two trees we kept were wonderful, but don’t believe them when they say that fake trees don’t shed. I can point out a place I need to vacuum right now.
  3. Routines Messed Up – Many autistic people find comfort in their routines. It is often quite scary when they are disrupted or upset. Much of this is not an issue in my life, but the issue pops up in very many people’s lives during the Holidays. It seems that if we work around these routines, we may get to be able to attend that party or accept people coming to our house after all. Another tip: we need periods of rest between our social endeavors.
  4. Christmas Shopping AKA “AAAAAAUGH!!!”I myself went to two Walmart stores and a Kroger (local grocery chain store) on a recent Sunday (December 3). I literally needed a two-day break to sleep it off. It used up my energy, used up my social resources and was a true exercise in patience. Maybe avoid Christmas Shopping during busy hours, perhaps? I’m sure there are less busy hours.