Autism is a Difference, Not a Disease

I LOVE this picture.  I have loved this picture for a long time.  In fact, for a while last year, this picture was my desktop icon on my computer.

I think in our society there is this perception that autism is a disease, that it's something we have to "cure."  And all that discussion of "curing" autism is one of the things that bothers Autistics the most (or at least it bothers me).  I know what illness looks like.  I have worked as a home support worker and a nursing student for years.  I have done 1:1 respite support.  I have worked with people in varying states of illness.  And I mean true illness.  I have seen people who are healthy, people who are sick, people who are very sick, and I've seen people die.  Because that's what happens when you have an illness.  An actual illness.

I don't know why people think Autism is an illness.  Autism is not an illness, it is just a difference.  Autism is just a difference.  Autism makes me different.  Autism makes me me.  And I have no issue with being Autistic.  I was born Autistic and this is just how I am.  And I think I'm pretty awesome.

I am Autistic and I'm very happy being Autistic, thank you very much.

What is Sensory Processing Disorder?

This is an excellent video that explains Sensory Processing Disorder.  While SPD is a condition all o its own, a lot of Autistics (including me) experience SPD.  SPD is sometimes hard to explain because it is so individual.

In this video, the narrator talks about the seven sensory systems: sound, taste, smell, touch, vision, proprioception, and vestibular.

He discusses how you can be over-responsive and under-responsive in each of the seven systems and they each act independent of each other.  I love the metaphor of the big cups and little cups the boy talks about in the video.  It makes a lot of sense to me and I think it's a great way to explain it.

I have a little cup for sound, vision, and touch.  This means: loud noises really bother me, multiple noises at the same time really bother me, fast music really bothers me, too many people talking at the same time really bothers me...  This means: bright lights really bother me, repeating colorful patterns really bother me, flashing lights really bother me, sometimes the TV screen or computer screen bothers me...  This means: sometimes I can't stand it when people are touching me (especially light touch), I get easily startled when people touch my back, I really don't like it when my hands are not clean, I really don't like touching things directly with my hands...

I have a big cup for proprioception.  This means: sometimes I need to run around or jump or stomp or wave my arms or hands to release energy when I'm feeling stressed...

I think the rest of my "cups" are medium-sized.

Loneliness

There is this perception that Autistics like to be alone.  Perhaps it is because we so often create our own worlds that we feel most comfortable in.  Perhaps it is because we enjoy our solitude.  Perhaps it is because loud noises and large groups of people make us uncomfortable.  All those things are reasons I like my "alone time," but it is also very true that I need my "social time" as well.

I like people.  Sometimes.  Sometimes I don't.  I guess it is more accurate to say that I like certain people.  My best friends, I like them.  I like many of the people I have classes with.  Some of my classmates I don't like so much.  I like many of my boyfriend's family members, his roommates, his church community.  I like the role models I've sought out for myself.  I like some of the people I work with.

While it is true that after a particularly stressful day, I'd love to just go home and sit by myself and do nothing at all, I didn't have a stressful day today and now I need some social interaction.  Today, I went to work, sat at my desk, and watched the clock.  Today, I wanted to leave all day because I was tired and bored.  But when 4.00 came around, my coworker asked if I was leaving and I had to think about it -- because I used to live near my boyfriend, but now I live an hour away.  I just moved yesterday and that was incredibly stressful.  And now I don't want to be here.  I don't want to be by myself.  I am incredibly lonely, sitting in this huge apartment all by myself.  I wish there were other people around to talk to, but instead I've got nothing but the whir of my fan to keep me company.  I know my boyfriend would rather I stop calling him in tears saying I miss him, and I know my mother-in-law would rather I stop texting her and lamenting about how alone and depressed I feel.  I know this.  And yet, this is the place I am in today.

I am incredibly anxious about the lack of cleanliness of my new apartment, but I cannot bring myself to clean today.  No, today I can merely sit and think and wonder and fear.  Today, I miss my boyfriend too much.  Today, I cannot bring myself to do anything productive.

Today, I have eaten a muffin and some macaroni.  Today, I have drank a 591 mL bottle of Diet Coke.  I am essentially too depressed to eat or drink.

I cleaned one fridge last night at 3 AM and the other is half-cleaned now.  I have to do my dishes and clean the bathroom, as well as clean my entire bedroom top to bottom before I can start to unpack.  Yesterday, I cleaned the walls and a few surfaces before I made my bed.  Today, my bed is clean but that's about it.  I need to sterilize my desk, closet, drawers, and then I need to unpack.

I'm watching this documentary only because I want to watch something at least sort of educational and the sound from the proper television is too loud for my ears to handle right now.  I am having a really hard time dealing with all the new sensory experiences in this apartment; the sound of the upstairs neighbor walking around, the smells coming from the different parts of the living room and kitchen, the burnt out light bulb in the bathroom, and the itchy fabric on the couches.

I hope this gets easier.

I feel "bottom of my soul lonely" today.

Two Days is a Long Time

I love my boyfriend.
I love that he supports me.
I love that he is kind to me and respects me.

Before our first date, I told him that I was diagnosed with autism when I was nine years old.  I had never told anyone that so quickly -- it took me years to divulge my ASD to my high school friends (some I still haven't told) and it took months with my university friends.  I had never admitted my autism to any previous boyfriends.

My boyfriend is out of town right now.  He has been gone for two days and I miss him so much.  In the past nearly five months, the most I've gone without seeing him has been thirteen hours, so two days is an incredibly long time for me.

I'm moving soon.  I'm moving about one hour away from my boyfriend so I can do my third year of university.  This will be a big challenge for me because I will miss him so much.  We've managed when I've been in school before, but I'm scared about this year because we're so used to spending so much time together.  I really miss him and have missed him incredibly for two days.  Two days is a long time.

I really, really, really miss him.  I can't imagine missing him like this five days a week when I move back to school.  I'm anxious about that, and becoming more and more anxious as each day passes.

My New Doctor

I met my new doctor a few days ago.

I finally have a general practitioner in the city I've lived for two years.  I'm excited about it.  I have had to go to tons of doctors here and I hate walk-in clinics because I don't like seeing a doctor I don't know.  It's uncomfortable for me to meet new people and especially to talk about myself to new people.  

My new doctor is very nice.  I was not sure how I would feel about her, but I'm really pleased with her.

 
I am very concerned about my health.  Sometimes, things that are health-related can really stress me out.  So I'm glad that my new doctor takes my concerns seriously and respects my fears.  I'm glad that she didn't dwell on the fact that I'm Autistic or that I sometimes experience debilitating anxiety.

I like my new doctor.  She just seems like the kind of person whose personality will mesh with mine perfectly.  And for that I am incredibly glad.  

I Will Vaccinate My Children

I will vaccinate my children.  I will do this because I want my children to be healthy.  I will do this because I want my children to stay alive.

Vaccines don't cause autism, and yet there are so many people out there that have bought into this myth and that's incredibly frightening to me.  Suddenly, now many kids are getting these illnesses that were unheard of ten years ago.  Suddenly, kids who are immunosuppressed are at risk around the increasing number of their unvaccinated peers.

This is a great quotation from Johanna Holmes on this pro-vaccination website.

"Indeed, there are few choices in the field of parenting that have stronger, clearer-cut evidence in support of them. Other parenting decisions are burdened by conflicting recommendations and may vary in different communities with different traditions. There is no such conflict of professional opinion regarding the science of immunization. Every single major medical and public health organization worldwide stands in unanimous agreement regarding the science and value of routine immunization. In the case of such clear scientific consensus, ambivalence seems driven more by fear than by fact.

"To my fellow parents who choose mindfulness, I tell you that you are correct: the small choices that you make do matter. They matter a great deal, but perhaps not in the way that many in the mindful parenting community believe they do. A three-month delay on an immunization may feel safer, but this delay is not the difference between a developmental disorder and normal development. It may, however, be the difference between pertussis and no pertussis. Measles or no measles. Hib meningitis or no Hib meningitis. This we know."

Of course vaccines have risks.  Some people can't get certain vaccines due to allergies, for example.  Some vaccines can cause nasty side effects.  But I really hate it when people choose not to protect their children or themselves simply due to ignorance.  I hate it when people choose not to vaccinate out of fear.  Johanna Holmes even discusses this in her article; she says:

"Small choices, done and undone, make all the difference in the world. By all means, ask questions regarding immunization safety. Educate yourself, immerse yourself in the science, the evidence, the documented risks of immunizations and of the diseases themselves. You owe it to yourself and to your children to ask the hard questions."

Autism is not the end of the world.  Having an autistic child is not the end of the world.  But I will accept if that's frightening to some people.  I know the parents who choose not to vaccinate because they're afraid of autism have a very real fear, be it justified or not.  Not all parents want autistic kids, and that's fine, I guess.  But I'd argue that all parents want healthy kids.  So vaccinate your children. Keep your children healthy.  

Labels

Over today and yesterday, I added "labels" to the blog.  It's pretty exciting to me because now even the blog is much more organized.  Or, at least, it feels a bit more organized.  I love search engines and tags and stuff like that, so having these labels is making my life a lot easier, because when I look at my blog I can see what I've talked about recently and organize my past posts easier.  I have over 80 posts and I can't remember them all off the top of my head, so labels are a useful tool.

I will figure out how to add some sort of search option and something so that you can click on a label and see everything under that label.

Merely by the Grace of God

This is a personal post.  This is not a post about autism, this is just about me.

Specifically, this is about my religion.

Like many people, I find strength in my religion.  My religion is Christianity.  And I love my God and I trust Him.  Or, at least, I try.  It's really hard to trust God sometimes.  It's really hard to hand my anxiety over to Him and give Him all my fears and frustrations and ask that He sort them out for me.  I know God's fingerprints are all over my life and His work is evident in all I have, but I still struggle with a lot of issues, and as much as I try, it's hard to let God take over my troubles.

I have various mental illnesses -- including anxiety, OCD, and depression -- as well as Sensory Processing Disorder and, of course, I have Asperger's Syndrome as well.  When I was a child -- pre-medication -- I was hard to deal with.  I was a difficult kid.  I had trouble communicating, I hated socializing, I had issues with touch, I had huge problems with lack of organization, I couldn't deal with plans, and I had extreme anxiety about things that were "unclean."

Now, on an ever-changing cocktail of drugs, I still struggle with these things, some days more than others.

A lot of my childhood was spent feeling miserable and useless because I couldn't handle a lot of things.  One of the ways I got through it was coming to faith, something I first found around the age of nine and then became more engrossed in as a young teenager.  It wasn't until I came to the realization that God made me special that I started to accept myself and believe I was worth more than some people tried to suggest.  When I discovered that God gave me autism and that was part of His plan for me, I began to see autism as something positive.

A long time ago, God gave me autism.  He gave me other challenges too, and He has consistently given me the tools and skills to overcome the things that stress me out.  He has given me the knowledge that I can throw to Him anything that stresses me and ask Him for help.  I know He loves me and wants to take care of me.  I know all these things.

So I pray and I pray and I pray.  I pray for Him to make me happy and calm and I pray for good and productive days.

And yet, it's so incredibly difficult for me to let go of control of my life and let God take over.  I know I will be happier if I let Him in, but it's still an incredible challenge for me.

It is merely by the grace of God that I am here today.  It is merely by the grace of God that I am the person I am today. 

But it's still so hard to trust God with my fears.  Especially when I'm having a difficult day like today.

Trust

It's hard to trust people sometimes.

That has nothing to do with being Autistic.  It's just about being a person.

I don't always know how to trust people.

And that has nothing to do with being Autistic.  It's just about being a person.