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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: This I Don’t Understand

People look at me funny, but it works for us.

Not everything I do fits in with the ‘norm.’ In fact, a lot of things I do look strange to other people.

Why is it that society says they value individualism, while (at best) giving people strange looks for doing things different?

That is at best. Some people get angry, look at you (me) in disapproval, even react in negative ways over things that have no effect on them personally at all (and don’t cause harm to anyone else.) Why is that?

What does it matter to them if I wear a toque in an arena when most people aren’t that cold?

What does it matter to them if I am working on my garden in April when it is too cold to plant?

What does it matter to them if I put shirts on my dogs?

What does it matter to them if I ‘walk’ my girls in a stroller?

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I wore the toque because I was feeling chilled.

I worked on my garden early because there was much to do before I could plant.

My dogs wear shirts to confuse the eagles that live a few houses down the street and want to eat my dogs.

My girls don’t like walking on the street – they are afraid of other people, and other dogs, and don’t like the feel of the pavement on their feet.

When I walked them without a stroller, we rarely got out of our yard before they refused to walk any more, and needed to be carried. They still got bored being at home all the time. And then as is true now, they got their exercise running around our yard.

So I walk them in a stroller, and we often get 1-2km every walk, twice a day. It is good for us. We get out of the house for a while, without a lot of the pressures of going somewhere.

It works for us.

These things work for us.

And some people think it is cute. But other people get angry.

This I don’t understand.

 

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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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