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Category Archives: Autism: Reality, Sensory Issues, and Other Abstract Concepts

Autism: Autistic Parents

The question was:  What are the pros and cons of autistic people having children.

The pros and cons are likely different for each of us, as they are for NTs.

I had a son (at age 19 years 6 months 1 day.) I also ran a daycare for several years, and tried to adopt through child welfare (had the children in my home for 3 years, but never got finalization, and the adoption failed.)

Some pros: Good at maintaining a routine.

Good at making/keeping appointments.

Good with structured activities (reading, singing, crafts, games, cooking, etc.)

Good at teaching.

Read to my son every day (often many times a day) from birth until right before his 14th birthday.

Understood HIS struggles better than most people could, even though we are very different people.

Research! Whatever I am interested in, I research – which, when my son was little, was children. I researched so deeply that when I took my Early Childhood Education at college (when my son was 2–4 years old) everything was review, and I graduated with dean’s honours.

I took my son to playgroup, to the park a lot, to the children’s museum… I put him in soccer, swimming, cubs, youth group, had birthday parties (and I have severe social phobia, and parties are especially hard.) I made an effort like most parents do – and I absolutely loved/love all of my children.

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Some cons: It is very difficult for me to communicate well (especially long term) with other adults. I become more anxious as time goes by, which causes people to stop trusting me (I don’t trust others, with good reason.) This had a lot to do with our adoption failure (I wasn’t diagnosed until after – and it is likely they wouldn’t have allowed me to try to adopt if they knew, though I very much disagree with that.)

I research a lot, and write a lot – which overwhelmed other adults trying to work with our family (again in adoption.)

When I get overwhelmed, I shut down – like when my son was born, I was in shock for a couple of weeks. I took care of him, but couldn’t think or focus well. I could have used a lot more help there.

I get overwhelmed easily, and don’t do well at all without sleep. I could have used some help there (my son didn’t sleep more than 20 minutes at a time for his first year.) Many new parents are exhausted. Autistic people might need a lot more support to be able to cope well.

I get overwhelmed easily (I know I am repeating, but this is the struggle.) So when we had 3 high needs foster kids, plus my undiagnosed autistic son, plus myself – I could maintain OUR schedule most of the time so none of us were falling apart, but then we would have the social workers step in and ask to do several things at once because it was more convenient for them – we would all end up falling apart after. Too many appointments at once, people not understanding our need for routine (which is good for children) can cause failure. It is a con. This is on me, I see that – but some understanding in this could make all the difference between success and failure. Again – support. Someone else to deal with an overabundance of appointments/understanding to ensure not too much is asked at once…

When I am overwhelmed, I can’t do everything. I could take care of my child, but for a long time could not keep my apartment clean at the same time. Later I could take care of my home and child, but having to work on top of that was too much. Too many appointments = too much. A lot of life is “too much.” Extra help and supports are often needed for success – as well as understanding that we can’t do it all, though many parents are expected to.

Social skills. Likely someone else will be needed in the child’s life to deal with important social events. As I mentioned, I took my children to a lot of activities – in my mind. The social workers said I was isolating them. I still don’t understand that as we went out a lot – and the summer they said that, I drove across the country, and took my children to visit a lot of family, and go on a lot of outings. I wasn’t diagnosed at the time – if I had been, I might have accepted that I have a ‘blind spot’ in this area. Having someone else to plan birthday parties, play dates, help communicate with teachers and specialists, etc. would be important for the children, and helpful for an autistic parent (so as not to overwhelm them.)

Sensory issues. I have a lot, and many surround smells and foods – especially foods. Personally I could deal with changing messy diapers. I got really fast at this with the daycare, and would NEVER leave a child in a mess – but that is because I am hypersensitive. Someone who is not so sensitive might need help in keeping the children clean. For foods, there are many I can’t have around me (boxed Kraft Dinner – generic included, mushrooms, hamburger, eggs – I am allergic…) For children to have some of these experiences, it would need to be apart from me. That doesn’t mean I couldn’t be a good parent.

Fixations. Rules. Okay… especially when anxious (made worse by judgmental people who don’t understand) I have a really hard time being flexible around rules. For instance, when our children were placed with us, they had very strong attachment issues. We were told not to let other people watch our children, or give them anything (toys, food, etc.) for at least 6 months to allow the children time to settle. So that is what I did – and everyone got upset with me.

Or there is the fact that I can see connections that other people don’t. When my children had sugar, for instance, I could feel it coming off them in waves – even if no one told me they gave it to them. Sugar strongly affected their behaviour, and made things harder, so I didn’t give them sugar. Ever. The same goes for wheat (not gluten, just wheat.) I sweetened with applesauce, or rice syrup, or something. I gave them other grains – rice, millet, chickpea, quinoa… but NEVER wheat.

I got in lots of trouble for that, and others saw it as being rigid and controlling. Perhaps it was – but… understanding and support can go a long way. Understanding that many autistic people can see patterns and connections that other people are unaware of (so don’t dismiss what we are experiencing even if you don’t see it.) I requested a dietitian. Some understanding and support could have gone a long way in getting all of us through this – whether we ended up giving the children sugar and/or wheat, or they provided better alternatives. We (autistic people) tend to get ‘stuck’ in our rules. We see why they are there, and the more attacked we feel, the more ‘stuck’ we get.

It might take more outside support, and a lot more understanding for Autistic parents to succeed – but we can do very well as parents (even thrive) with the right supports and understanding. In fact, being a parent was the single most fulfilling experience of my life – and losing my children through adoption failure the single most traumatic.

In conclusion I believe people with autism can make excellent parents – with good supports and understanding in place – and having children can be such a positive, growing experience for (some) autistic people that I believe it is tragic to deny (us) that experience rather than provide the supports needed for us to succeed.

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Autism: Possible, Not Easy

It makes it possible. Not easy. Not easy.

These are the words that often run through my head as I am riding. I have been riding my bike a lot lately. My bike. Our bike. We share it. I ride it. A lot.

A couple of months ago my husband got a call from his brother. Not at all unusual. He came to my room where I was writing in my journal and asked, “Do you think (our son) would like an electric bike?”

He wouldn’t. He doesn’t like bikes. He doesn’t much like being outside – if it is too hot, or too cold, or too ‘buggy,’ he doesn’t want to go at all. Plus he finds bikes uncomfortable. We might think it would be useful for him – since he doesn’t drive, and there is no bus service here, and we are surrounded by houses and farms (no stores or anything close to us.) We might think it would be good for him, but he wouldn’t.

“No, he doesn’t like bikes,” I answered, “He thinks they’re uncomfortable.”

I would like an electric bike, though,” I told him.

He talked with his brother some more, and a few weeks later, we had an electric bike. Since my husband’s nephew works as a director for the company in Canada, and two of my husband’s brothers also bought e-bikes at the same time, we got an amazing deal.

Still I felt guilty. When someone buys me something, I always feel guilty. It comes from my childhood. It comes from trauma. Plus I worried that I wouldn’t use it enough, or was spending too much (I don’t work, after all) or like most of my decisions, it would be a bad choice.

And then the bike arrived, and my husband rode it home from his brother’s house.

As another brother (my husband has lots of brothers!) drove in with our van (that we bought off him 10 years ago – though I guess that’s not important to the story) and visited with me while we waited, I understood that my husband wanted the bike, too.

In fact, by the words of the people he knows that have talked to me about the bike, it sounds like we got the bike for him. I am okay with that. It removes some of the guilt of having the bike bought for me. We did get a great discount – but it is still an e-bike, and still wasn’t cheap.

Anyway, he works 4 days a week, and is too tired most of the time when he isn’t working to want to ride. At the point of this writing, he has gone about 35km, and I have gone more than 420km!

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The thing is, where we live in British Columbia, Canada, every direction has hills. Steep hills. So since moving here, riding has been pretty much impossible for me. Other people might be able to do the hills. I have too many barriers. It didn’t matter how hard I tried, I couldn’t do them. I couldn’t.

And then we got the e-bike. And then I started to ride. And unlike driving a car, I found that riding a bike calms me – even if it is technically more dangerous. I also understood (though I have lived in this house more than 14 years) that half a kilometre away from me are rural properties – for a long ways. I love riding by the farms, and seeing the animals and trees and land. I love that I can ride, and hardly any vehicles come past me. I love it!

So I ride. Day after day. First 5km a day, then 10. Then one day I decided to ride to the beach 5km away. It is a short drive, but I never drive it, so I didn’t really know what to expect. Half the way there, I started saying, “uh-oh!” It was all downhill. So steep downhill that I pretty much had to ride the brake. I didn’t know – and now I would have to ride back up.

On the way home, I honestly thought I would die. My chest hurt so bad, and I couldn’t breathe. I prayed the whole time to be kept alive for the sake of ‘my girls’ (my dogs) and my son. When I got home I told my son I wouldn’t likely do that trip often.

Two days later, I did the trip again. Three days after that I did the trip again. By the fourth trip, I didn’t feel it was enough, and (after getting back up that hill) I took a detour to make the trip longer. I now ride about 15km each day – and I seek out the hills.

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But the hills??? They aren’t easy. Not even on an electric bike. It doesn’t make it easy, but it does make it possible.

And as I was considering this thought again, I started comparing it to accommodations, supports, and income assistance for people with disabilities – and I think these are pretty much the same thing (or at least that should be the goal of them.) They don’t make life easier than other people have it. But they should make living with a life quality similar to others without disabilities possible.

Not easy. Possible.

 

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Autism: Independent Living

While I have not been posting on my blog site often in recent months, it isn’t as if I have stopped writing altogether (as if that would ever be possible!)

Several months ago, right after I had struggled in getting my vision testing done, I did a Google search on what to do when vision testing doesn’t work for you.  I came up with the site “Quora,” and have been answering questions on there ever since.

For example, the question from this morning was:  “Can adults with Autism live independently without support?”

So I answered it:

Some might be able to. It really depends on many factors.

I, for instance, am what would be considered to be “high-functioning.” I have an average or above IQ, am (sometimes) verbal, can read, write, completed college with honours, have held a job for months, even years at a time…

But…

I have a tendency to panic attacks, am prone to depression, struggle with time management (time seems to go too fast for me, and I move to slow in it, so working more than a couple of days a week is too much for me and I can’t live outside of that.) I get burnt out easily, and shut down when I am overwhelmed.

When I lived on my own, I could never make enough to pay all of my bills. I wasn’t out spending money on things I didn’t need, but still ended up frequently short on money. Not enough for rent, hydro, gas, other bills. I couldn’t do it.

Also I struggle with abstracts – and thoughts of the future are pretty much entirely abstract. For example, I moved across the country, after completing my Early Childhood Education (with honours), to open a home daycare in a community that needed daycare.

My view was that I was allowed to care for 7 children, including my own. (5 under 5.) So even if I only filled those 4 spaces left for young children, I would have no trouble paying my bills. I took out a loan, moved across the country (fully expecting I would have no trouble flying home a couple of times a year to see my family) and opened my daycare.

What I could not see was that most of the care I would provide would be part time. Those 4 spaces would be filled by 10 children – and frequently I would be juggling and having to communicate to the parents in order to never go over 4 children at a time. Communication was hard. Getting enough income to pay the bills was very hard. Working full time to try and make enough to live was exhausting.

I couldn’t continue long term, ended up NOT being able to pay my bills, struggling to get money to eat, having my gas shut off, defaulting on my loans, and having to claim bankruptcy. NOT because I was out spending money on things I didn’t need, but because no matter how hard I tried (and 20 years later, this is still very true) I could not make enough to deal with everything.

In fact, trying to deal with everything a home requires to run (even excluding money – which had I been diagnosed, and been put on disability, I might have been able to manage) is so overwhelming that my brain shuts down (like an overloaded circuit breaker.)

Running a daycare was not the only factor in my inability to live independently. I also tried working in construction, and working in a small motel. Even in jobs I really liked, and could work at part time, I would become so panicky I couldn’t keep going. I am now at home on disability, as that issue became worse the more I tried, not better.

I am married now, and my husband works and takes care of the bills. He also helps me to socialize, and does the majority of the driving (even though I do drive, the unpredictability of other drivers and pedestrians causes me to panic and become exhausted too fast to actually get much done once I reach my destination.)

Maybe if I had a good level of disability payment support, and lived in a place where I was walking distance to most things I needed (groceries, church, etc.) and was on a very good bus route to anywhere else I might need to get to, I might be able to live independently. As it is, even as a high functioning adult with Autism/Aspergers, I can’t do it.

Easter 2015

 

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Ode To A Dog

I came across this poem in a book I have been reading (Vegan’s Daily Companion by Colleen Patrick-Goudreau) and it really resonated with me. I thought I would share it, and hope this is allowed.

“Inscription on the Monument of a Newfoundland Dog”

by Lord Byron

When some proud son of man returns to earth,

Unknown to glory, but upheld by birth,

The sculptor’s art exhausts the pomp of woe,

And storied urns record who rests below;

When all is done, upon the tomb is seen,

Not what he was, but what he should have been:

But the poor dog, in life the firmest friend,

The first to welcome, foremost to defend,

Whose honest heart is still his master’s own,

Who labours, fights, lives, breathes for him alone,

Unhonour’d falls, unnoticed all his worth,

Denied in heaven the soul he held on earth:

While man, vain insect! hopes to be forgiven,

And claims himself a sole exclusive heaven.

Oh man! thou feeble tenant of an hour,

Debased by slavery, or corrupt by power,

Who knows thee well must quit thee with disgust,

Degraded mass of animated dust!

Thy love is lust, thy friendship all a cheat,

Thy smiles hypocrisy, thy words deceit!

By nature vile, ennobled but by name,

Each kindred brute might bid thee blush

disgust, for shame.

Ye! who perchance behold this simple urn,

Pass on – it honours none you wish to mourn:

To mark a friend’s remains these stones arise,

I never knew but one, and here he lies.

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Autism: A Better Mistake

It had been several years since I had been to the eye doctor. Even then, the last time I went I got contacts, and wasn’t given my new prescription for glasses. I was due for a new prescription, yet I am on a disability pension (federal, not provincial, which doesn’t have any benefits, and pays much less at that) and have no coverage, so couldn’t bring myself to go.

The last time I went, it was $150 just to see the eye doctor, and that didn’t include the cost of glasses. I can’t afford that.

So I have been putting it off, and putting it off, and meanwhile I have been getting more and more disoriented as I go out. My prescription wasn’t working for me anymore, and I had to do something.

That is when my friend told me about the vision clinic in the mall – there I could either buy glasses from them, and get the prescription free, or buy the prescription from them for $45, and get my glasses somewhere else.

I fully intended, when I went in to that appointment, on either buying the glasses there (ready in a hour – very convenient) or buying the prescription, and getting my glasses at the online store I have been using for years. Fully intended as in those were the only two options I had in my head going in – and I don’t change my thoughts quickly, especially when I am in a situation (such as going to an appointment and talking to some strange person) that causes me anxiety.

It happened just before Christmas, and my husband drove me down to the appointment. At least I didn’t have to deal with that!

She took me in right away, and said she had forgotten the appointment, and had put on some Eucalyptus essential oils or something – and asked if it bothered me. Not at all. I have sensory issues, but I actually like most scented products like that. If she smelled like smoke… or even unscented products (those are some of the worst for me) it would have been a problem, but not the eucalyptus.

Then she started with the vision test.

I might have been in there 5 minutes total, but…

The way vision tests are done is very hard for me. I can’t remember in between the lenses which one is better, and anyway, they pretty much all looked blurry.

I tried. I tried really hard. I even told her I was struggling, and that they all seemed blurry.

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We got to the end of the test, and she showed me the old and new prescriptions. They were both blurry, and I told her that – so she got frustrated and said it was the best she could do, and I should go to a proper eye doctor if I wanted something better. I couldn’t explain my struggle.

She had the prescription on the screen – both the old and the new. I was looking at it as I wondered how to solve the issue – could she try again? I couldn’t afford to go to a proper eye doctor. I stared at the screen as I tried to process this complication – but she sent me out without any options.

When I got home, I decided to order glasses with the new prescription anyway. I felt bad for not paying for that prescription, but she had said that I only had to pay for it if she printed it out for me – she didn’t even give me that option.

My old prescription was still in the system online, and my astigmatism hadn’t changes (she said that while I was in the appointment.) So I put in the new numbers, and ordered the glasses.

Meanwhile all the numbers I had seen were running through my head, and I realized I made a mistake – I put in both numbers for my left eye (old and new) and not the correct one for my right eye. I emailed them right away, and tried to have it corrected – but it was Christmas, and no one got that email.

Just before New Years I got the email saying my new glasses had been shipped – ‘great,’ I wrote back, ‘only I emailed saying I had the wrong prescription and asked to have that changed.’ They got that email, and said it wasn’t a problem, they would make my glasses in the proper prescription and I could send the ‘wrong’ ones back.

And then they came in…

I was just going to send them back unopened, but I wanted to see how bad they felt to wear – this prescription was -0.50 stronger than I was supposed to have for my right eye. I put them on and…

It was the best I have been able to see in years!!!

They were perfect. Comfortable. Didn’t make me dizzy at all. In fact, it was the first time since I started wearing glasses that I didn’t want to take them off. So wonderful!

I wrote again to say I wanted to keep this mistake. It was too late to cancel the proper ones, but they did give me a large discount. Since it was my mistake (and a very happy one at that) my husband and I agreed that I should pay for them.

The ‘proper’ prescription is good for using at my computer, which is pretty close to me. For everything else, I use the mistake glasses.

A better mistake I have never made.

 

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Autism: Me Trying to Live Better

I don’t tend to do New Years resolutions. For one thing, January doesn’t feel like the start of anything for me. From the time I was very young I have considered a year to go from September through August – and when I say something happened ‘last year’ that is often the time frame I am going by.

For another thing, I don’t tend to stick to things long enough to say, “this year I am going to…” and mean it. I get burnt out too fast. I get overwhelmed too fast. I quickly fail. Again and again I fail. I really don’t need anything more to be considered failures for me as I carry them all around with me, and they weigh me down, and make it harder and harder to do anything well (or even have the energy to try.)

So I don’t make New Year’s resolutions, and this year is no exception.

Only I have been thinking about this a lot.

I am a compulsive person. I need routine. I need to know what is expected of me – even if I am the one putting those expectations on myself. I don’t do well with open ended suggestions, or time frames, or flexible commitments (what does that even mean?!)

Because of this I tend to push myself way beyond what is good for me (though I do realize it isn’t much in terms of what other people do) and I… make a mess of things. I push myself, and push myself to keep these commitments – and while I am keeping them, I am failing.

Take this blog, for instance (and for instance here means this is what I am talking about.)

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In the beginning I was writing six days a week. My decision – not based on what anyone else asked for – yet a commitment just the same. I pushed myself to burn out, and finally decided to go down to three days a week.

That was more manageable (after all, most of my posts take less than 20 minutes to write – and it isn’t like I am doing much else) and yet I was still burning out. I have been writing now for 2.5 years, and for the last 7 or 8 months I have been pushing, panicking, overwhelmed trying to schedule three posts for every week.

And why???

I keep asking myself that. It isn’t like someone else told me I had to write three posts a week. It isn’t like missing some here and there would have been the end of the world. But I am compulsive, and I couldn’t not write.

Yet I have been painfully aware that because I am pushing beyond what I can handle, I have noticed that my posts (at times) have been suffering. It isn’t even so much that there is a badly written post here and there – that could happen, and I know it does, but… It is that when I am overwhelmed – whenever I am overwhelmed, I tend to become negative and start venting.

Venting.

It isn’t a good thing.

The purpose I had for writing this blog was to say “Finally I have been diagnosed – now what?” I expected things to get better. I expected maybe that others would understand my struggles more, and that I would understand my struggles more, and that because of that, things would get better.

But I still struggle badly with depression and anxiety – even though I am no longer working. I still struggle with sensory issues, and burnout, and irritation. I still fall into moments of despair.

And I don’t think that it is good for me to be writing so much that I turn this blog into a journal instead. I am trying to remind myself that not everything needs to be shared in order to be honest – I really struggle with over sharing; I have for a long time.

So though it is not like me – and I am not even sure I can function this way – I have decided that it is best to only write my blog when I have something to say. No schedule. No pressure. No venting.

So not like me – yet so what I need, I think.

And this decision, I have to remind myself, is a good thing. This is not failure, this is making the right decisions for me. This is making the right decisions for my family.

This is me trying to live better.

 

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Autism: December 2017 part 1

December of 2017 was a really tough month for me. A month filled with panic, hopelessness, and despair – and I really can’t even say why that was. It was just hard.

It didn’t help that time seems to be speeding up for me, making it even harder (and it has always been hard) to align my perceptions with reality. It also doesn’t help that there is so much pressure around Christmas – gifts and such – whether real or perceived.

And even if people say not to worry about it, worry I will – for excusing myself from what I feel that others expect of me leaves me with an overwhelming sense of guilt. Even if it doesn’t matter much to them I will still carry that guilt with me… forever (at least it seems like that, since I still feel guilty for every time I disappointed anyone, or said ‘no’ to a request, or…)

So it was a hard month. A sad month. A month where most days I could barely move, and it was all I could do not to cry most of the time. It was only a week before Christmas when I was able to gather up the motivation to even decorate – when often I have things up by the beginning of the month (for I do like the lights!)

Christmas Eve was busy. I made a turkey dinner (because it is cheaper than chicken) for my husband and son and dogs and cats – I don’t eat meat – and we went to church for the 2pm service instead of at 10:45am as we usually do (it was a strange Sunday.)

That might seem normal for most people, but it is a lot for me. So overwhelming that I dreaded it for more than a week before – and I was only cooking for my family. It wasn’t like I was cooking for a large group, or even for friends and extended family (that I can’t do, it is just too much pressure.)

It isn’t even like making food for my dogs (I have 3) and cats (we have 2 upstairs – my son feeds his own cat) is unusual. I do it every 3-4 weeks. But it is something I do on days when my son is cooking usually for it is very time consuming. You see, I make a large batch for them, and then freeze the food in silicone baking cups; enough for a month. The meat has to be cut into small pieces, no bones, and the vegetables, broth and such get blended up and divided after. It is quite a bit of work on the day I do it, so I don’t like to do anything else that day.

But I couldn’t help it for Christmas since the turkey was large and for everyone (but me.)

Anyway, I got through it. Once it was done I could relax a bit.

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