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Tag Archives: adult autism

Autism: What Are You Afraid Of?

As always, I was early for the appointment. I am always early. I have to be. As the minutes tick by before my appointments, or my shift at a job, or the start of school, or… my panic grows. By about thirty minutes before I have to be anywhere, I am in a full blown panic attack, where the only relief comes from ‘getting it over with.’

So, like having to go swimming in a cold lake, I eventually have to just ‘jump in.’

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That doesn’t mean that when I get there I will be ready to do anything – talk, or work, or… Being early does help me in that once there I am no longer panicking about being late, or the car not starting, or forgetting to go (not that I ever do, but the fear is still there) or…

It does help in transitioning me into the new environment. Transitions are hard. I need to give myself a lot of time for them. Without that extra time, I feel as if I have been shocked, and nothing beyond that moment goes or feels right – whether that is a half hour appointment, or an 8 hour shift at work, or…

So I was early, and she was late. That is usually the case. Doctors are busy, and appointments go over, and they have to write things down, or do whatever it is they do to complete one appointment before moving on to the next.

For this appointment, I have been struggling in anticipation… no, dread, for the past six months. And as the day approached, and the moment got closer, that panic only increased.

10am came and went, and I knew my distress was noticeable. When I am coming to a full panic attack, I cross my arms, and grab my shoulders with my hands. I guess a weighted blanket would help in that moment, but… it would look silly, and that would make me more anxious. I wish I didn’t care about what other people think – life would be so much easier – but I do care. I care a lot.

It was 10:15 before she came to get me.

She asked me how I was, and I couldn’t answer. I don’t like that question anyway. It is too open ended. Too difficult. Not the right place (walking down a public hallway) to express anything other than ‘fine’ which anyone looking at me in that moment could see was a lie.

It isn’t that I purposely didn’t answer, but I couldn’t. When my anxiety is that high, there is a block in my ability to communicate, and it is very hard (impossible even, at times) to work around.

She asked me two more open ended questions that I was unable to answer (“How have you been?” and “What have you been doing?”) before she came to one that I could speak for, “Have you been meeting with (your therapist)?”

“Why are you so panicky when you come in here?” she asked me. “What are you so afraid of?”

Well… I try to be clear in the words I am using, but what I am saying is so frequently misinterpreted, and my words get twisted, and… you have so much power over me. What if you decide I can work, and I get taken off of disability – but like always, I fall apart, or fail, or crash, or can’t get started… then everyone looks at me like I wasn’t trying, and I try to express how hard I was trying, and they look at me like a failure, and I am filled with shame because I couldn’t do what you said I should be able to do – so they believe you, because you are the professional, and I must just be lazy or something, and…

“Because I try to talk, and I think I am being clear, and then people don’t understand what I am saying,” I answered.

“Well, I think you are being clear,” she answered.

And therein lies the problem… I think I am being clear, and they think I am being clear – but when they speak their interpretation of what I have been saying, I find they didn’t understand at all. So I try to correct them, but they hold to their original interpretation – and everything falls apart from there.

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Autism: Freedom For Now

We had this vehicle that was sitting in our driveway for many months, not being used. It wasn’t our vehicle, but we had agreed to store it for family.  Since no one was using it, my husband asked if it would be okay for us to get it insured during the time that my mom was here – and the owners agreed.

Suddenly I have a vehicle – not that one, for it is a standard. I can drive standard, but… I am anxious enough driving an automatic. With the standard, there is so much more to think about, and so many more issues that could arise.

For example (and I guess this is the worst one) when I have to stop on a hill in the standard, I am painfully aware of how close other vehicles stop behind. When the light changes, and it is time to go, I not only have to think about the lights and the traffic in front of me – but there is the brake, and the clutch, and the gas, and the gears, and… the vehicle that will roll backwards before it moves forward.

It is all too much – like city driving (which I don’t do – at least not in or near the city I learned to drive in.)

So my husband will take the standard car to work, and I will have the use of our automatic van during my visit with my mom.

Only he didn’t just get insurance for the 2 months while my mom is here, but for six months!

It feels really strange.

I haven’t had free access to a vehicle for a long time. In fact, in our first 9 or 10 years of marriage (even after I got a job outside of my home, and with different shifts from my husband) we only had the one vehicle.

When I was going to school, and had to travel to and from the job site frequently (we were building a house) my husband decided it was best to get a second vehicle for convenience. But when I stopped working, well… there really wasn’t enough reason to justify the expense of a second vehicle, so the extra went to the wrecker (we only ever buy well used vehicles) and we were back down to one.

It made sense. It did make sense.

If I needed to get anywhere, I would have to drive down to work with my husband, and pick him up at the end of the day, in addition to doing my own thing. Sometimes I did, but… driving into town and back once causes me severe anxiety (just being in town without driving causes me strong anxiety.) By the time I got home, I was nearly always crashing – and going out again was really a very difficult thing for me. So I didn’t do it often, and have spent most of these years at home.

Then I qualified for door to door bus service – only I had a bad experience with that, and was afraid to try again.

Instead I have been home. I like to be home, but with no accessible way to leave home, I have felt trapped and isolated.

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And now, suddenly, I have a vehicle again. I drove into town today to pick up a few things for my mom’s visit – and town was busy! I don’t know why it was so busy on a regular Monday not altogether close to tourist season, but it was.

I arrived home worn out and exhausted, and very anxious about having to go out again to pick my husband up at the end of the day… but then, I don’t have to, do I?

It feels strange, but I am grateful for the sudden freedom that having a second vehicle allows. Perhaps not worth the expense long term, but it is really nice for now.

 

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Autism: Much As I Can Handle

For anyone who would have seen me the past few weeks, I believe the general opinion was that I was healthy enough to work. Day after day from early in the morning until later in the afternoon, I was out in the garden, with my girls. I was turning the soil, and pulling the weeds, grass, rocks, and lots of June bugs out of the ground, trying to get the gardens ready for planting.

The work was steady, and repetitive, and took a lot of work – though not a huge amount of focus.

At the end of each day, I was dirty, sore, and exhausted. Yet each morning, as long as the weather cooperated (and to a smaller degree when it didn’t) there I was. Working.

There was this time pressure to complete, as spring was coming fast. Well… it was spring, but… the last frost date, or whatever. We have a short growing season, and this year even shorter as it was a longer winter than normal. So things need to be planted ‘on time’, or so I have read.

Though I study the material, and try every year, I really don’t know what I am doing in the garden. But this task was pretty simple. Dig and flip the soil, crumble it in my hands, remove all weeds, grass, rocks, and bugs that look like they might eat my plants, throw the soil, worms, and ground beetles into the ‘good’ pile.

People walked by and commented, as they do. I tried to reply appropriately, and went back to work.

My ‘girls’ chased anyone passing, and ran through the garden, and very much enjoyed themselves. I gave them the attention they needed, watched for eagles (that live just down the road), fed them on their schedules, ate on mine, and went back to work.

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Unusual to me, I was somewhat thankful for the rainy days, for then we had to stay inside. Perhaps I should have rested then, but there was so much to do inside in preparation for my mother’s arrival, that I was nearly as busy inside as out.

For three weeks I worked hard, and anyone who saw me would likely think I was well enough to get an actual job.

Though it was something I really wanted to do, however, I started to crash at about the 1.5 week mark. By 2.5 weeks, I was really pushing myself. Those last two days I almost didn’t make it through – and had it needed more work, I couldn’t have done it.

Three weeks for a job I liked, that I could do at home with my girls, and where I was mostly alone doing something for myself. Three weeks, and I crashed.

And there lies the problem of seeking another job at this point in my life. I would go into the interview having to prove to the manager that I was the best person for the job (and in the beginning, I just might be.) I would take the job with everyone hoping, and even expecting, that this would last. It would almost be like I was telling them they could count on me – for what else are we really saying when we agree to take on a job?

Yet I would know it was a lie. I would give that job everything, because I can’t give less (for I am always concerned about what people think of me) and I would try really hard to keep going. But, as has been true pretty much my entire life, and certainly from the start of high school at not quite 14 years old, the crash would come.

If it was a particularly good time in my life, and the job was one that suited me well, I might (if not asked for too much change, or too much time, or too much…) last 5 or 6 months before I fell apart. And then, if it was still something I was enjoying, and I was getting along with the people I worked with and for, I might be able to hide the fact that I was crashing from the people at work for a few months more.

At that point, no amount of effort on my part – or incentive from outside – would prevent me from falling apart even there. Meanwhile, the effort would have taken a strong toll on my marriage, my home, and my emotional state.

And that is for a good job, that I want to succeed at.

If it were any less, I would still give my all (for I can’t give less) but I would likely not last a week before I was really struggling, and in less than a month, everyone else would know it.

So here I am, doing the very best I can to take care of my home (which is of top importance for me) and after three weeks of working hard, I am crashing. Thankfully I am at home. This is my work right now. Thankfully, though I could lose the work, and have everything come crashing down around me (it happens) a few days, or even a few months of ‘crashing’ won’t be viewed as a public failure. And that is about as much as I can handle.

Yet I always feel pressure from outside that I should/could be doing more.

 

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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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Christmas 2016

Two days before Christmas, and the snow is really coming down. My two ‘babies’ are resting warm on my lap (no need for a weighted blanket these days, for two Chihuahua’s are just the perfect size for a substitute.) “It’s A Wonderful Life” is playing on my television, and my son is just heading out to shovel the driveway before my husband comes home. In the back of my mind is a small concern of accidents, loss, and change – this weather always brings that fear out in me.

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On account of the weather, my friend who was to visit this afternoon had to cancel. There is some disappointment, but above that is a relief that she is safe at home, for the roads are really bad right now.

The gifts are wrapped in bags we have recycled for years, and are sitting under the tree which is lit in red, with a glowing white angel on the top. I set a record this year, buying everything in one three hour shopping trip a few weeks ago. Not that I bought much, for though I love my family, I do not believe in going beyond my means to buy things they might appreciate, but do not need.

As usual I worry about these gifts that I bought; I am not good at choosing presents for people. It simply isn’t my thing. Will they like them? Are they enough? Are they too practical, or not practical enough? Gift giving is difficult, stressful work – yet I still hope deep down that they will be pleased.

When I was a child, I was always sick at Christmas; too much excitement, I guess. It was too bad, too, for every year we went to visit at my Aunt’s house, with all of my father’s family there. It was exactly where I wanted to be, yet due to feeling so sick, I was always put in a quiet room to rest, and had to miss out on most of the visiting.

These days I still like Christmas. I don’t often find myself sick as a result of the excitement anymore, but I am also not close enough to visit my family, either. I haven’t seen them at Christmas in 17 years, and it does make me sad. Still I have my son, my husband, my church… though my family doesn’t live here, I am not alone this Christmas, and I am hopeful that I will enjoy the day anyway.

My gifts were given to me early this year in the form of my son’s old gaming computer that he reformatted and set up for me a couple of weeks ago when my laptop died, and my second chihuahua – mother to my Clara, who was also given to me nearly two weeks ago – a blessing my husband allowed. I am very thankful for both.

Yet presents are not what makes a good Christmas. I do enjoy the visiting, and the Christmas services at church. I enjoy the games, and the puzzles that we do together as a family. For me, time spent is so much more important, and so much more appreciated, than the gifts that come… or don’t.

What I really hope for this year, as I enter the Christmas season, is that our gift to my mother of a return flight to come for a visit is accepted, and able to be used. It has been over two years since I last saw my mom, and I sure do miss her – but the 4000km between us often seems insurmountable, for none of us has much in terms of money.

As I finish this post, and enjoy the end of my movie, I want to take the time to wish everyone a very Merry Christmas filled with love, and family, and all things good and hopeful.

 
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Posted by on January 13, 2017 in Experiences of an Autistic

 

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Autism: Becoming a Hermit

I hate to leave home. Even when I go camping, I wish I was able to teleport to get there and back so that I could have my own kitchen, and bathroom, and be able to enjoy what I love about camping without having to truly leave home. Or perhaps I would appreciate making my home on a property that would also work for camping.

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I prefer shopping online, and learning online, pretty much doing everything from the comfort of my own home. I suppose that is why the idea of virtual reality appeals so much to me, for I still want the experiences, it is just… I don’t want to leave home to have them.

My first, and longest lasting job was running a daycare from my home. I appreciated that the work was brought to me, and felt terrified of any thought that I might ever have to work away from home.

This wasn’t always the case, however.

As a child, school gave me extreme anxiety – but ‘home’ was worse; especially when my dad was there. So I went to school (and wished I was invisible.) When school was out, I spent a lot of time exploring parks, forests, and waterfalls with my older brother.

I loved camping, and going for walks, and picnics, and visits with family. Amusements were, and continue to be (though I now live nowhere close to them) my favourite places to go, despite the crowds and noise.

When I was in cadets, that was where I wanted to be, and those were the people I wanted to be with. Anxious? Extremely. Yet I still preferred being there to being at home.

Even during my teen years, though I really struggled with school, and often ‘chose’ not to go (really, I couldn’t make myself some days, and some seasons) I still preferred to be on the school grounds, visiting with my friends, or even sitting alone, to being at home.

It is true that for all of those years, eating, and especially bathrooms were a huge issue for me – but then, they were at home as well. There really was no safe place for such things for me. Such issues only became worse with time.

I finished high school through correspondence, which was a much better option for me, but I still wanted to be at the school when I did the work – just not in the classroom, and sometimes not even in the building.

When my son was born, and we were still living with his birth father, I would walk for six hours a day, every day just to get out of the house. I suppose the reason for that was more that my son’s father was on a different schedule than us, and wanted us to be quiet while he slept during the day – an impossible thing with an infant at home. Still, I enjoyed that time out walking with my son.

Shortly after my son turned one, I started babysitting my six month old cousin. Suddenly it was too hard to get out of the house, and we spent most of our time at home – and I felt trapped. That only lasted through the summer, and after that I took my son to playgroup, playgrounds, children’s museums… anything to get out for parts of the day.

I think it was my first attempt at college (for which I did really well – though again was extremely anxious) that being home all the time became most appealing to me. I was in my early 20’s at the time, and shortly after graduating, I opened my home daycare.

In the years since, I have become more and more of a hermit – or perhaps I just became too exhausted with the anxiety and judgment, and failure, and… that happened whenever I left the house.

Though I do go to church, and I have gone to college again, and I have had jobs away from home, it has never become any easier. The older I get, the more my entire being screams to be home whenever I go away, and I guess that over time I have just become too exhausted to keep fighting it.

After all, I like being home.

 

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Autism: On The Defensive

“There aren’t enough jobs for everyone who wants one anyway,” I think to myself in defense. “Some people are always going to be out of work; especially in this economy. So why should I push myself to do something that would be really bad for me, and lead to another failure.”

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The thing is, I do get so defensive when I feel pressured to work. Yet people always seem to judge and pressure people in one way or another. Why do we do that? As if our opinion, and our preferences (or how we chose to push ourselves) is all that matters – and who that person is, and what is best for them, means nothing at all.

I know that people do this, yet it still consumes my thoughts, overwhelms me, and fills me with anxiety and self hatred when it is directed at me; it always has – even when I was working, and especially as I was raising my children; for parents get the worst pressure put on them to conform to other peoples opinions.

  • I should want to work; what is wrong with me?
  • I should push myself to work; I must be lazy.
  • I shouldn’t want to be home all the time; it is wrong to be isolated.
  • I shouldn’t be living off public support; I must be selfish.
  • I should just live with the overwhelming anxiety, depression, irritation, exhaustion, burn-out… that comes from working – like everyone else does, right?
  • If I can’t work, I have no value.
  • If I have no value, I don’t deserve… anything.
  • If I can’t meet their expectations, they would be better off if I didn’t exist.
  • No wonder they hate me.
  • If they hate me, I must be no good.
  • Since I can’t be good, I hate me, too.

And you see how quickly the pressure for me to do what they think is right leads to depression and suicidal thoughts?

Because no matter how hard I try; no matter how hard I have always tried; I am always a failure in their opinion – and no matter how defensive I become towards their opinion, somehow I always end up believing they are right, and I am broken, and I blame myself for that brokenness, for they seem to be of the opinion that if I tried harder, I would be okay.

Yet it is for these very reasons that I was approved for disability. It isn’t as if I woke up one day thinking, “I don’t feel like working anymore. I think I will live off public assistance,” and then somehow convinced those in ‘power’ that a person who was able to function well, but didn’t feel like it, deserved that money. It just doesn’t work like that!

It was out of the brokenness that they found me, and realized that (when 60% of applications are denied for this type of disability payment) that my barriers to employment were so extensive that it was unlikely I would be able to work for a very long time, if ever again.

And still I know that if I ever find myself healed, and healthy, one of the first things I would do would be to go looking for work. I don’t need the opinion, disgust, judgment, or pressure from others to take me there. If I am well, I will find work. If I am not, pressuring me to do what I am not ready for will only break me further.

 

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