Thursday, 28 November 2013

Tumblr & Happiness & The West Wing & De-Stressing

This weekend, I will explain the many ways autism has effected this week of my life and the discrimination I've had to deal with in the last few days.  

But for now, I'm trying to be calm and happy.  I have an exam tomorrow that I am trying my best to study for.  

I love this tumblr site and it was recently updated!  It is called "Little West Wing Things" and it is for fans of the amazing show The West Wing and basically posts little quotations or concepts from the show that make me (and other West Wing lovers) happy.  

 Submitted by fangirl-squee Submitted by mbaldi
 Submitted by minalover 

Those were some recent additions to the site that made me smile.  

If you're a West Wing fan, you'll probably like this tumblr.  

If you're not a West Wing fan, you probably should be.  The show celebrates smart individuals and smart dialogue.  The show tackles complicated and multi-faceted issues.  I love it.  When I'm having a bad day, The West Wing is often my solace, and since I can't spare 44 minutes to watch an episode tonight, this tumblr is giving me a good few minutes of joy.  

Monday, 25 November 2013

I Hate Sad People

Sometimes people are sad.

I have never been comfortable around sad people because I don't know how to respond to them.

Sad people make me uncomfortable and anxious.  I just don't know how to react around them.  I shut down.  And there are people who turn to me for comfort, but I just don't know *how* to comfort them.  

I fully recognize that I am "bad at sad."  But I really stress when I'm expected to be comforting and I am simply incapable of it.  These are the moments I feel the most Autistic (in a bad way).  These are the moments I struggle the most to feel comfortable with myself and feel like an adequate person to those who love me.  I sometimes feel so incompetent in relationships.  And when people are sad, I tend to feel worse about myself.

Sunday, 24 November 2013

What Are "Meltdowns"?

The best answer I've ever heard to this question is from autisticdrift on tumblr (their tumblr is linked here).  Autisticdrift responded:

It’s different for everyone. Some people withdraw and get very quiet. Others appear to be really angry (throwing or hitting things, yelling, cursing). Others seem very sad/distressed (crying, sobbing, not talking or seeming inconsolable). Some people try to “disappear” by making themselves small, covering themselves with blankets or wedging themselves into a small hiding place. 
I don’t think there is a typical response across all people but I do think that each person has a response that is typical of them, if that makes sense.

For me, meltdowns start LOUD and ANGRY, with crying, yelling, throwing, and hitting.  Meltdowns are an out-of-body experience and I honestly don't comprehend myself or the situation when I'm having one.  I know I scream and cry and wail because I've seen it on video tape (my parents used to tape them when I was a kid because they didn't understand them and wanted to show my doctors) but I honestly have little recollection afterward.  I cry and I scream and I throw and then I shrink down into a tiny little quiet shell of myself.  I try to hide and make myself invisible.  

That is the progression of every meltdown I have ever had from early childhood until now.  

Meltdowns are a really unique experience and something that neurotypical individuals cannot usually understand.  

The most important thing I want to get across, though, is that meltdowns are not temper-tantrums.  Meltdowns are different.  Meltdowns are a response instigated by our unique neurochemistry.  They are not voluntary.  

When I am having a meltdown, I am not really there.  

Friday, 22 November 2013

Can Autistic Parents Be Good Parents?

An Autistic woman not much older than me is in the process of losing custody of her second child.  There are a lot of factors behind the fight, but the one that everyone seems to be focusing on is the fact that she has autism.  People have decided, apparently, that individuals with autism can't be good parents.  I've heard that so much recently and I'm very upset about it.  I've been struggling with how to discuss this concept in a blog post, but here goes:

Autistics are people.

It is true that our brains are different than neurotypical brains.  It is true that we often do things differently than neurotypical people.  It is true that we might be quirky or need more help with certain tasks than others.  But it does not make us less than human.

There are lots of Autistics who don't want kids.  There are lots of Autistics who don't like kids.  But there are lots of people in those categories too.  It is true that some Autistics may need more support and teaching when it comes to parenting, but it is not true or right or even remotely okay to blanket that in the completely untrue fact that "All Autistics would make / do make bad parents."

There are lots of neurotypical individuals out there who are bad parents too, but we don't hear about them, or when we do, we don't focus on their labels.  When it is an Autistic individual (who does anything!), the first thing people report is that that person is Autistic.  And that's where the focus remains.  Autism has all sorts of negative connotations because anything an Autistic individual does presented as something they did because of their neurochemistry.

I do not have any children yet.


I want children.  I have always wanted children.  For a long time I didn't think I'd be able to have children because I struggle so much in relationships (with anyone) that I never expected to have a romantic partner or a support system in place, but I've miraculously been blessed with both.  Everyone close to me knows that I'm Autistic.  And sure, I do some weird things and they "blame it on the autism," but we all do weird things, mine just be a bit more noticeable at times.

That doesn't mean I'll be a bad parent.

I can't wait to be a parent and I have felt that way since I was a child myself.  I've always loved kids and am excited to one day have my own.

I think I'll be an excellent parent.

Thursday, 21 November 2013

Kourtney Kardashian and Khloe Kardashian said the R-Word

A few days ago, I mentioned that I'd seen an episode of Keeping Up With The Kardashians in which Khloe Kardashian said the r-word.  I blogged about it here on November 19th.

Keeping Up With The Kardashians is an American reality show about a large blended family whose members are (mostly) famous for being famous.

In the bottom row of this picture the right hand side, is Scott and, next to him, Kourtney.  Kourtney is the eldest Kardashian daughter and Scott is her partner.  Neither one is particularly appealing to me nor have I ever found them particularly appealing, but I found a new dislike in both when I watched the ninth episode of the fourth season and heard Kourtney use the r-word.

The context: Kris (Kourtney's mother) was complaining about Scott's poor work ethic and immaturity.  Kourtney, in what I think was an effort to defend him, said: "He's not r------d."

Then, a few minutes further into the episode, Khloe (she's the one on the far left on the bottom row, the third-born Kardashian daughter) says the r-word.

The context: Kris (Khloe's mother) tells Khloe she has to come to a function even though Khloe's husband is injured and she wants to be with him.  Khloe angrily responds: "I'm not r------d."

That language is inappropriate - ALWAYS - and I am offended that the Kardashians (public figurse who I believe some people must look up to) are using that language so casually and showing people that this is acceptable behavior.

The truth is that the r-word is EXTREMELY OFFENSIVE to a lot of individuals - particularly those with developmental disabilities - and it is absolutely inappropriate to use the term derogatorily because it implies that those individuals with special needs are worth less than their typically developing counterparts.

I'm sure the Kardashians didn't consider any of this before theyspoke.  But I think theyought to, especially since they might be looked to as role modesl.

We do have to "spread the word to end the word" and there is so much work to be done.

Wednesday, 20 November 2013

Special Needs Community Resources

Do you know what's weird to me?  There are so many community supports for children with special needs but so few for adults who require those same services.  In so many places, when you turn 18 you become ineligible for so many programs that are so essential for so many individuals.  That's so unfortunate.  It seriously makes me sad.

There are conditions that people put a lot of research money in to and conditions that people really pity in kids.  Those kids get a lot of donations and services in the community.  Those kids' lives are made better and easier by people who work hard to give them opportunities to reach their full potential.  But when they're 18, why should those services suddenly stop?  Why do so many organizations stop investing in people once they reach that magical threshold age?

I don't access any community supports right now.  Last year, I did access a few supports, mostly through my university campus's disability resource center, where one of the staff members was very helpful with guiding me to what I was looking for.  Before university, I attended all sorts of programs and groups as well as various therapies.  I now that I've reached my early twenties, I'm too old to qualify for most of them anymore.

But being "an adult" doesn't mean that someone is done needing help.  I know a lot of people who are much older than me but who rely on private services to help them in their day-to-day life.

Adults matter, too.

I think we all know that.  I don't think that's a groundbreaking statement.  But I do think it's important to recognize that a lot of places really do leave young adults stranded in terms of resources when they "age out" of programming.

Of course I see the value of helping kids, but what makes adults any less valuable?

In typically-developing culture, adulthood is seen as this magical time when individuals no longer need the support and nurturing they received as children because they are supposed to be fully independent.  However, for individuals with special needs -- including Autistics -- that often isn't the case.  As much as I would like to say I am fully independent, I know this is a lie.  I have so many people around me who help me with the little things I cannot do, and this is the case for most Autistic young adults I know as well.

One day I want to "grow up" to a point where I no longer need people to translate the world for me, remind me to eat, and make my house safe.  But I'm not quite there yet.  And a lot of people need more support than me.

So, I wonder, why does the availability of community resources decrease so drastically once one reaches "adulthood"?

Tuesday, 19 November 2013

Khloe Kardashian said the R-Word

I'm not a reality TV person.  Actually, I despise reality TV.  But I love my best friend and she wanted to hang out with me and wanted to watch a show called Keeping Up With The Kardashians.  I'd never seen the show before, but now I've seen a few episodes.

Essentially, it is a reality show that follows the lives of a very privileged blended family in the United States.  The family members are not particularly likable nor do they seem particularly intelligent, but the show certainly has its share of followers.  I've mentioned it to a few people recently and apparently it is quite popular; it seems like all of my close friends have seen at least one episode.

From what I can tell, the show focuses on the family's eldest three daughters whose names are adorably alliteration-y: Kourtney is the oldest, Kim is in the middle, and the youngest is named Khloe.  Everyone I've spoken to has a "favorite" of the three.  In the first few episodes I saw, my favorite was Khloe.

I was disheartened and offended when -- in the first episode of the the third season of the show -- Khloe casually used the r-word to describe someone she didn't like.  I thought that was just terrible. This is horribly offensive to a ton of people.  And since these women are influential public figures and many impressionable individuals watch this show and see these women as role models, I really worry that this sets a horrible example.

I don't think that word should be allowed on television.  It is not a nice word.  And even though there are so many people who understand and believe this, it is equally true that there are a lot of people who don't yet understand what is wrong with the r-word, and I think it is our job to educate them and set a good example.

Monday, 18 November 2013

This Is Autism

I am autism.

A lot of other people are autism as well.  I., G., H., A., C., T., T., M., A., L..... (some first initials of some Autistic friends of mine) are autism.

Today is This is Autism Day, and I feel as though I should be giving some deep and meaningful description of what exactly autism is and provide some uplifting analysis of how Autistics are integral for the healthy functioning of the world.

According to the DSM-V, autism can be diagnosed whenever there is a combination of a very wide range of possible signs and symptoms that the manual lists.  That is really vague.  But that's what autism is: autism is a ton of different things in a ton of different patterns and has a ton of different presentations.

For me, autism is:
- loving words
- making lists of names
- not being able to process emotions healthily
- struggling to control my anger
- crying over things that don't need to be cried over
- not crying at sad things
- an intense fear of social situations with large crowds or unknown people
- a special interest in quiz shows and empirical knowledge
- a love of my puppy, my boyfriend, my mother, and very few other people
- extremely sensitive to the needs of animals but not the needs of people
- horrible stress at the idea of change
- needing a solid and structured plan 100% of the time
- panic attacks when little things change
- shutting down in situations that make me uncomfortable
- jumping, waving, shaking, twitching, repeating words and sounds to make me feel better

I have no meaningful conclusion for today's post.  I just want to say: Autism is different for everyone.

Autism is complicated, but it should never be scary.

Wednesday, 13 November 2013

Random Musings From & About Today

Today, I had school until 3 and now I'm sitting at home finishing up a paper that's due tomorrow.  My friend is coming over later and hopefully she'll motivate me to work a bit harder.  Today is also my roommate's birthday.  I had an all right day at school today but my instructor doesn't seem to like me very much and I'm upset about that.  Plus I had a horrible headache and my leg has been really sore all day; I've just been feeling "off."

I had a long conversation about medications on my way home with my best friend / roommate.  I was talking about how I want to eventually go off my medications.  She thought it was a bad idea, saying that I function relatively well on my meds and shouldn't do anything to jeopardize that.  I told her that I've been on so many pills since I was 9 years old that I don't even know what I'm like without them.  Part of me is scared to find out but part of me is immensely curious.  I want to know what the "real" me is and I feel like for the last decade-and-a-bit these medications have been suppressing the "real" me.

I have a lot of schoolwork to do tonight but I'm pretty tired.  I have my Diet Coke and All Dressed Chips here to keep me company, but Youtube is calling and I'm much more curious in watching The Brain Scoop and Sci Show than writing my paper.

I ate an avocado for lunch today that was not very ripe.  Eating it was challenging.  It provided a lot of amusement for my classmates though.  I guess that's a good thing.  A few hours later they were still talking about how funny it was when I spent half an hour trying to eat my avocado.

I had my hair up all day and then took it down when I got home but I still have a headache.

My room is cold.  I kind of broke my robe last week so I will need to get a new one eventually.  I'm still wearing it now but it's not as good as it once was.

My roommates and I watch Jeopardy every night at 7.30.  Hopefully I'll have my work done in time to partake.  I love Jeopardy.

I feel like I'm gaining weight and that's making me really self-conscious and uncomfortable.  I'm not sure what to do about that.  It's a recent fear but it's making me nervous.

Saturday, 9 November 2013

Thankful Saturday

I am thankful for this day.  For spending time with the man I love.  For sharing my heart with him.

I am thankful that he forgives and understands my anxiety.

I am thankful for the good friends in my life.

I am thankful for my health.

I am thankful for the children who love me.

I am thankful for this Saturday.

Friday, 8 November 2013

God Created Autism

It's no secret that I am a Christian.

While I know faith is not for everyone and those with faith often believe different things, my personal journey has been greatly influenced by my understanding of God.  

I spent a lot of my childhood feeling out-of-place and like there was something wrong with me because I never quite "fit in."  

Coming to terms with my autism took me a long time, and it wasn't until I realized that God created me for a reason and He was the one who gave me my amazing brain.  

I believe God gave me autism for a reason.  That's just what I believe.

Thursday, 7 November 2013

A Certain Project

Some of you might now that I am studying health sciences in university.

I have always been fascinated with medicine and the pathophysiology of illness so this was a good career choice for me.

In all honesty, I started university fearful of people and scared of making friends.  I really hated being social for the first few years I was here.  Now I'm feeling a bit better about myself.  I feel less passive. I know I "fit in" (at least some of the time) and I feel good about that.

Anyways, I love learning about medicine.  Medicine fascinates me.

I have a project to do for a course in the end of November.  The assignment is to research and present on a congenital or genetic illness/disease.  The teacher provided us a list of approved topics to choose from; it includes:
Cystic Fibrosis
Congenital heart
Sickle cell anemia
Cleft lip/palate
Nephrotic syndrome
Polycystic kidney disease
Seizure disorders
Club foot
Hip dysplasia
Osteogenesis Imperfecta
Muscular Dystrophy
Type 1 Diabetes
Turner Syndrome

I sort of glanced over the list a few days ago, glared at it, and moved on.  Whatever.  I decided I'll pick something that isn't on the list.

And then yesterday, another person in my program sent out an email just to let everyone know what she had picked so that we wouldn't choose her topic.  She told us that the "disease" they had picked to research and present on was was Autism.

For obvious reasons, it upset me when she used the word "disease" to describe autism.  I know I am more than autism, but I do associate autism with me, and it's not fun to think of so much of me as "diseased."

Not impressed with people -- especially people who are studying to be in the health care field -- recognizing autism is a "disease."

Wednesday, 6 November 2013

Do You Use "Autistic" as a Reclaimed Word?

Over on Musings of an Aspie, there's a great conversation going on about "Autistic" as a reclaimed word.

It's hard for me to give objective information about Autistic as a reclaimed word since I am Autistic and, in all honesty, Autistic is just what and who I am.  Autistic isn't an insult to me.  Autistic has never been an insult in my world.  In my world, Autistic is just how I am.

That's the thing I found most amazing about this post: the reminder that Autistic is a label and it does often have negative connotations.  "Autistic" is a word that a lot of people associate with stereotypes that do not reflect the wide range of individuals who fall along the autism spectrum.

I know that when I use the word "Autistic," I am using it in a positive way.  However, when others say "Autistic," I'm the first to admit that I don't know their intentions with that word.  And that gives me a sort of skewed understanding of Autistic as a reclaimed word; it is reclaimed in a lot of ways but its connotation is so dependent on who is using it.

And, of course, this makes me think about people-first language...  But we'll get to that (for a little rant) later...

Autistic is not an insult.

We need to get that out there.  We need people to know that Autistics are all around and it's important to treat them respectfully, which of course includes using respectful language.

Person-first language is not something that tends to offend Autistics (or, by-in-large, the Autistics that I know), while it is important to other groups.  That's fine.  Person-first language is amazing in some situations and we cannot put person-first language down, even if we like saying "Autistic" instead of "person with autism."  And if you like saying "person with autism," that's just fine too.

I think we need to focus our efforts on using respectful language and just being respectful in general.  I think we often do use Autistic as a reclaimed word and I think that's fantastic; we just need to continue to teach others that autism is not something that should make anyone afraid.

Tuesday, 5 November 2013

The 5 Scariest Autism "Treatments"

Emily Willingham, a contributor to Forbes, recently wrote this article.

It is frighteningly titled "The 5 Scariest Autism 'Treatments'"

And goodness, it sure is scary.

Honestly, the 'treatments' Ms Willingham writes about are really shocking and disturbing so I'm not going to detail them here.  I linked above to the article if you would like to know more.  Essentially, what Ms Willingham uncovers is that the 'treatments' people have used (possibly with good intentions) in order to "cure" Autistics are extremely dangerous and can cause permanent harm or even death.  That's terrifying to me.

I don't believe that Autism is something we need a cure for, but I do agree that some Autistics function better with certain interventions (like medication or ABA).  I know I do, and I don't think that makes me any less Autistic or any less human.  Regardless of your opinion -- and I know that as soon as anyone mentions "autism treatment" or "autism cure" there are bound to be people riled up -- my public service announcement is:

Please be educated and, above all, please be safe.

Monday, 4 November 2013

Autistics Speaking Day (A Few Days Late...)

Matt over at Dude, I'm An Aspie posted this amazing blog in honor of November 1st being Autistics Speaking Day.

Matt is a great blogger and artist who was one of the first autism advocates I really related to when I discovered him online.

I spent Autistics Speaking Day doing what I love - SPEAKING about autism and fighting for the rights of Autistic individuals.  Unfortunately, the weekend was super busy and I really haven't had a chance to talk about any of that on here.  But since I've wanted to talk about Matt's adorable post, because I think it is so relatable and if you haven't seen it, it's worth checking out.

In Matt's post from his Dude, I'm an Aspie blog (I linked it above), he talks about the "monsters" of autism.  He describes these as the individuals who pretend they're on the side of Autistics but really they're spouting nonsense or pushing their own agendas and causing genuine danger to Autistics.  These are the people who spread paranoia.  These are the people who treat Autistics as less than human.  These are the people who firmly believe that autism is a disease that needs a cure and Autistics would be much better off if they weren't Autistic.

I've tried and failed to write a post for Autistics Speaking Day and then a lot of life things came up and now it's November 4th so hopefully I'll get a chance to talk about that but I'm not making any promises.

Regardless, I think the most important thing to take away from Autistics Speaking Day is that Autistic individuals need to have a voice when it comes to issues that concern us, and Autistic individuals deserve the same dignity and respect that anyone else would deserve.

We need to speak up for ourselves and not let our voices be drowned out by people whose agendas might not be as pure.

"Be loud!"