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Autism: Through My Brother’s Mouth

My younger brother is noticeably disabled – meaning that when people see or talk to him, they can tell. Obviously I am not him, and can’t attest to his experience, but it seems to me that people are much more gracious to disabled people who seem disabled.

Not to say I wish I did, only… perhaps I wouldn’t have been so hard on myself throughout my life for not being able to fit in??? I didn’t know I was disabled, and believed people’s labels and assessments of me (which weren’t kind.)

NT’s seem to not like labels – as if they put people in ‘boxes’ and make it harder to live – but I really appreciate my diagnosis. It isn’t like I didn’t know there was something ‘wrong’ with me before, just… I always thought it was my fault. (So did other people.)

Anyway, my younger brother is noticeably disabled.

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He has been on medication for a severe seizure disorder since he was very young (before Kindergarten.) The medication, along with the fact that he doesn’t like to brush his teeth, means that he has a receding gum line, and not so clean teeth. I, on the other hand, tend to obsess about brushing my teeth – and have a real struggle talking to people if I don’t feel my teeth are very clean.

My brother has a tendency to squint, and when he does, he curls his upper lip in towards his gums. It looks strange. I see that now – but I had the same issue and had to work really hard as a young teen to stop doing that (after having it pointed out to me by a few people – who weren’t being kind when they said it.)

When my brother talks, there is a noticeable catch in his words. He stumbles over them, much like tripping when walking. I don’t think I have a catch in my words most of the time – and no one has ever pointed that out to me, but…

My brother has a limited number of ‘special interests,’ which have been the same for years: bus schedules, wrestling, canasta. Since he is extroverted, he talks about these things a lot! To whoever will listen (and since he doesn’t seem aware at all if someone is irritated by his choice of subject, so long as they stay in listening distance, he will talk.)

Since my brother has a traumatic brain injury from a car accident when he was very young, he never was diagnosed Autistic – though even before that accident he was unable to speak (at 4 years old) and my mom says he was quite a challenge to care for.

I am not my brother.

I obsess about brushing my teeth. I learned not to curl my lip in towards my gums. I have not been told I have a noticeable catch when I speak (and in fact, when I have shared this with others, they have confirmed they have not noticed a catch when I speak.)

I do have special interests, and, being quite introverted it is easiest for me to talk about these interests in order to avoid not being so quiet, but… I do notice when others get annoyed with the subject (in fact, since I don’t appear disabled, they are much more likely to tell me they are annoyed) And when they seem to be ignoring or annoyed with what I am saying…

I feel like I am speaking through my brother’s mouth – complete with receding gums, curled lip, and frequent noticeable catch.

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Autism: Dressing Appropriately

It wasn’t exactly a cold day, but I had been getting sick. I had washed my hair, and since blow drying causes my scalp to itch intensely for a long time after and I therefore avoid it most of the time, my hair was quite wet when we went out that night.

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Already feeling chilled, and knowing our seats were near the ice of the hockey arena (my husband is given free tickets when his friend and coworker, who holds season tickets to the home games, can’t go) I decided to put on a toque and gloves, and was glad that I did.

My husband also wore his toque, as he almost always has on some type of hat when we go out.

So there we were at the arena dressed in a way that made sense to us. In between periods we get up and walk around the arena – it is good for exercise, and a good way to spend the time.

On one of our rounds, however, a man stopped us. We didn’t know these people at all, wouldn’t recognize them to see them again, and I can’t see how what we were wearing had any effect on him – but he stopped us and seemed sincerely upset that we were wearing toques on that night.

He turned to his wife and asked her if it was cold enough for the way we were dressed. She said no, but that she thought our toques were ‘cute.’

He shook his head and mumbled as they walked away and I thought, “what does it matter to him how we decided to dress?”

It isn’t like we were naked, or wearing the other team’s jersey, or walking into a sauna dressed for winter – yet he was quite upset and I don’t get it. If he could get so upset over something that didn’t effect him in the least, how would he respond to something that was actually important?

It is true that I don’t often have any clue what other people are wearing. Even when I try really hard I can hardly ever keep in mind what people have on from the moment I turn away – I just don’t see it. That has always made it near impossible for me to dress in a way that I ‘fit in,’ and by the beginning of high school I had even given up trying.

I am, however, very sensitive to the weather. Hot, cold, wet, windy… I feel all of these to the point where if I am not dressed appropriately for the weather, I am completely fixated on that discomfort (read: pain!) For that reason I am very conscious that what I choose to wear is comfortable for the situation.

While I was in the arena – chilled, near the ice, getting sick, and with wet hair to boot – I was thankful that I had decided to wear my toque. It was only after this… interaction, that I became aware that we were the only two people in the arena dressed so warmly. Still I don’t understand why that mattered to much to him.

By the time the game was over (‘our team’ won 7:4) the weather had turned. The wind was blowing hard, filled with rain that even looked like snow up above us, and it was cold! So cold that my teeth were chattering by the time we got to our car – and this man still had me questioning my decision to wear a toque to the game.

Ridiculous.

 

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Autism: Hostile World

I don’t belong here.

It has been the resounding theme of my life.

Unliked. Unwanted. Not like them.

Not trusted. Not accepted. Not belonging.

I want to be liked.

I try to fit in.

They allow me…

Because it is Christian.

Because I am… family (of a sort.)

But not because I belong.

I don’t.

First they let me know;

By glances and actions rather than words.

I try harder, and harder still.

And rather than improve their acceptance of me –

It gets worse.

They don’t want me there, and…

I wish I could be a person who doesn’t care.

But of course I care.

I’ve always cared.

Yet if I can’t be accepted,

My impulse is to run.

Maybe another school,

Another group,

Another part of town?

Maybe another province,

A city where I have never been?

But wherever I go,

Whatever I do,

There I am:

Not belonging.

So I build these worlds.

These fantasies in my mind.

And the more pain my reality contains,

The further from reality my fantasies take me;

Until there is little left

To bring joy or relief

In the world around me.

So much fear.

So much pain.

I would spend most,

If not all of my life,

Dreaming;

Just to endure it.

But the older I get,

The less the dreams satisfy;

For I know my dreams,

These fantasies,

They won’t come true.

I return to a world that feels hostile to me.

Alone and fearful and full of pain

Thinking “maybe if I try harder,

Try harder,

Try harder…”

But the harder I try,

The less I belong.

I wish I didn’t care,

But I do.

I am still nothing more than that small child,

Crying to sleep at night

For being abandoned in a big, frightening, painful world

That never wanted her.

me at 7

 

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Autism: People Watching

Last night my husband took me into town for a free music concert which happens every Wednesday throughout the summer. It was unexpected, as it was only the second time we went down this year (the first time was while my mom was visiting, and wanted to go before she left.)

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Since I wasn’t expecting it, I had prepared a large meal for my husband and son that night, and was holding off on my shower until just before bedtime as usual (when I am going out, I will have it in the afternoon.) As a result, I had 45 minutes after supper to have my shower and get all of the dishes done. For a while there, I was quite overwhelmed.

I did end up getting all of this done, and was only about 5 minutes later than I had hoped when I was ready to leave – but I also had a large wet spot on the clean shirt I had just put on, from doing the dishes. I can’t seem to wash dishes without some of the water getting on me. At least this was clean water – but it still made me quite self-conscious, and I didn’t really have time to pick out a new shirt.

Anyway the weather is still very hot and dry, and my shirt was dry by the time we got down there.

The band was… well, my husband described them as bluegrass. The music itself was fine, but I really didn’t like the lyrics. My husband thought they were ‘fun.’

There were a lot of people there, and I very much struggle in crowds. We did sit near the back, on a short ledge, with a garden behind us. We sat beside someone I went to school with for my building trades program at college a few years back. I didn’t talk much to her – I am not good with people – but I did enjoy visiting with her dog!

Most of my time there, at the music concert, was spent in ‘people watching.’

People really confuse me. This has been true my entire life – and I have spent just about my entire life, as I was last night, on the outside observing.

There were children dancing, and some adults too. Some people sat in place, tapping their feet to the music. Others were talking, visiting, hugging, laughing.

Some parents were playing with, laughing at, or dancing with their children.

People were… living.

Fully present in the moment, and (maybe it just appears that way to me, but) not even self-conscious about what they were doing, or how they were interacting, or how they were coming across to others, or…

The thing is, no matter how hard I try, I could never come across as being spontaneous, or… free. For no matter where I am, or what I am doing, every detail is being analyzed in my mind, and I am aware of… everything.

All I do is forced for it seems nothing comes naturally to me. And when I watch people – not just at the concert last night, or at church, or… but everywhere – I see that a lot of life for most people seems to be just that – natural. And maybe that is what people have been calling me on my entire life, while I believe that I am doing things the same as they are: they are natural, and for me, it is all forced.

So they don’t trust me for seeing that my responses are forced, they believe I have something to hide – when in truth the only thing I am trying to hide is that I don’t belong here. Not just in that place, or this city, or that church, or… but in the world.

Nothing is natural – except maybe, just maybe my interactions with dogs. Nothing is natural, and it makes me really sad – for I really do want to be free like them.

 

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Autism: Handy Dart

It had been so many months since I sent in the paperwork, that I just assumed I didn’t qualify. “They could have at least written back and let me know,” I thought; and then I forgot about it. Well… not quite forgot, just sort of let it go. So I don’t qualify. I didn’t really expect to anyway. After all, I am not that bad.

For months I stopped talking about it. There was nothing to say. Only that morning I had been talking to my son, and questioning why people don’t respond even just to say, “sorry, we can’t help you.” Just to get some sort of closure. I wasn’t expecting anything much out of the conversation. I had been sick, and still wasn’t thinking well. It is like illness puts a fog on my brain that doesn’t let up for a long time once it is over – and I was still in that fog.

I hadn’t talked to my son for a while, because I had been very sick – so had my husband – and he didn’t want to get sick, too. So he stayed downstairs, and I slept upstairs for a lot of days. I still wasn’t thinking well, but I was getting better, and it was really nice to spend time talking with my son (even though I hardly knew what was being said.)

When he went back downstairs, I checked my email, and had received a message from my therapist letting me know about cheap swim times at the community centre. Knowing that I am not close enough to town to either walk or get a bus (no buses come anywhere close to my house – I would have to walk near an hour to town to catch one) and that my husband takes our only vehicle to work (besides, though I can drive, my anxiety around driving usually keeps me home anyway – especially when I would have to drive to town and back three times in a day to get my husband to and from work, and go do my thing in the middle of the afternoon.)

I am pretty isolated here, though truly we are not that far from town – just 7 minutes driving – but it is 7 minutes of twisty, turny, hilly terrain, which I am not well able to walk.

So months ago, trying to encourage me to get out of the house sometimes, my therapist suggested the “Handy Dart” bus service. It is a service for disabled people who couldn’t manage to catch a regular bus, or get to appointments and such in other ways. For $0.25 more than the regular bus service, this one will pick you up at your home and take you right where you need to go. Then they will pick you up when you are done, and take you home again. Sort of like a cab, only you have to phone and set it up 3 days in advance, including letting them know if anyone else is coming with you (for an extra ticket) and it is a bus, so shared.

Considering it would cost about $20 to get from my house to town in a cab (that is just one way) this is a great deal! Only it is reserved for highly disabled people: cognitive, physical, and sensory.

I am isolated, and I do have severe anxiety. I do get bad motion sickness, especially on buses. I do have bad sensory issues (only I am not sure how the Handy Dart can help with that since there would be other people on the bus, and sometimes other people smell.) At the same time, if there were bus service in my area, I could take the bus (not pleasant, and very anxiety provoking, but I could do it.) If I had another vehicle, I could drive to town. And if I lived closer to town, I could walk or ride my bike to get where I needed. Only none of those options are available to me. So months ago, I filled out the forms for the Handy Dart. My therapist filled out her portion, and my husband brought it in.

Then… nothing. Nothing for months. Of course I didn’t qualify. I am not that disabled.

But my therapist suggested I contact them, and “see if I might qualify.” So I emailed them, because… phones. Less than 5 minutes later, I got a phone call back, “Sorry, I am not sure how this got overlooked. The boxes are all checked, and you are good to go.”

So I did qualify. Right away. No question that I am not disabled enough. Obvious to them that I need this service. So obvious. And I cried in response.

From the moment I first went to my doctor for an Autism diagnosis, I have received nothing from them except the fact that every step of the way it is so obvious to them that I am highly disabled.

  • Yes, you have autism… and OCD, and PTSD, and severe anxiety, and depression, and…
  • Yes, you are struggling too much to be working.
  • Yes, we will put you on medical leave.
  • Yes, you qualify for long term disability, though 60% of applications are rejected.
  • Yes, you qualify for Community Living services, reserved for highly disabled individuals.
  • Yes, you qualify for the Handy Dart service.

I should be thankful, and I am! It is just that… for nearly 40 years I fought so hard to be ‘normal’ and to ‘fit in.’ People never accepted that I belonged, though they were mostly too polite to tell me to go away, yet they always judged me as if… as if I could work hard enough to fit in, and just wasn’t making enough of an effort. And I believed them.

For nearly 40 years I fought, and failed, to be seen as normal, typical, capable… and now at every turn they respond as if to say, “Of course you have Autism.” “Of course you need these services reserved for the most disabled people.” “Of course you couldn’t succeed in that world.”

And I think, “so why did you make me feel for so long that these failures were all my fault?” “Why didn’t you tell me that I wasn’t able to be like you no matter how hard I tried?” “If it is so easy to see, why was I expected to be like everyone else?”

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” – Albert Einstein

That is me. I have spent my whole life believing that I was a failure; that I was stupid; because they tested me in ways that I never could have succeeded. And now I find that this was so obvious to them that there was never a question that I was ‘typical,’ or even could be. So why didn’t they tell me?

And why do I still think that if I fight myself hard enough, I should be able to do what they expected?

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Autism: Knowing Myself

I am a person who struggles a lot with discontent. Whatever I have, I dream of something different. I am working on this. I am praying about this. Still I struggle.

I wonder if this has to do with a lifetime of trying, and failing, to meet other people’s expectations. A lifetime of thinking that this lifestyle, or that job, or some ability is the definition of success. Here I am 40 years old, and I don’t know who I am. I don’t know what I like. I don’t know what I might be good at, and spend so much energy fighting against those things that I am definitely not good at – because I feel I should be able to do them.

Take, for instance, my strong desire towards, and fixation on, homesteading. So often I long to be able: to grow food, to harvest food, to have a wood stove, to gather, and store, and know that if I want to eat I have to work for it. I want to be able to knit, and sew, and make crafts to display around my house. I want to have many animals (and not have to eat them) and a large piece of land far away from people.

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Only I have no energy, and am not gifted in any of these areas. None. Okay, I am good with animals, but I am not good with death. I’d like to have them, but to what purpose? I don’t have the physical strength to keep up the work of caring for them day after day, and I really need my time for sleep, which having a large farm to care for would not allow.

It doesn’t make sense, yet I feel so strongly that I should be able to do this, that I am completely denying the truth of whether I actually could. Maybe it has more to do with my lack of trust in the economy, or my dislike of being dependent on other people – but there is so much about that lifestyle that I cannot do, and rather than accept that fact, I become discontent with my lack of ability.

Then there is the idea that a good life includes a huge family, which brings on the desire for many children. Only I couldn’t have more than one child, and even trying to adopt didn’t work out. All of my life this was something I wanted, and I could not understand why some people didn’t want that. In these later years, however, as I pick and pull at these desires that have driven my life, I begin to question: Why? Why do I want children? Why do I believe having a lot of children is the definition of success?

I was so upset by my failures in this area, that I was constantly feeling driven to try harder, and beg for more that I never stopped to question whether I should. I loved being a mom, don’t get me wrong, but there is so much about being a parent that is beyond my ability or comfort level, that the knowledge my son has grown beyond those years should bring me peace rather than a longing to return.

Being judged by other people, for instance, is a huge struggle for me. Yet parents are being judged constantly, and it seems nothing can be done ‘right.’ The more children a person has, the more room to be judged. On top of that, I am completely awkward around other people. Playdates, schools, teachers, playgrounds, other parents, birthday parties… having children demands interaction, and all of this was way beyond my comfort level.

Then there is the idea of being responsible for the health, safety, and well-being of another person. The very idea of that level of… power – it terrifies me. And with children, all of my sensory issues are tested to the limits each and every day, and my attention (which automatically turns inward, and is quickly exhausted when pulled out of myself) is demanded at all times.

Above all of this, there is the constant terror of all that could go wrong, and I see it all. Someone said that having children means to forever have your heart go walking around outside of your body – and this is both completely true, and overwhelmingly terrifying for me: anything could happen. Anything.

I like my quiet. I like having a lot of time to sit, and think, and analyze. I like having a lot of alone time, without demands being placed on me to get things done. There is so much involved in both of these areas which I am not good at, that even the desire to live in such ways leaves me feeling like a failure.

So I believe I have been given this time to review and rewrite my idea of what success means, and to understand what drives this discontent in my life, and figure out how to let it go.

 

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