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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.

welland

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?

May 22 2018 008

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: 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!

May 22 2018 012

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.

May 22 2018 004

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: Communication Blocks

One day, a “Quora” member asked:  Why don’t nonverbal autistics speak? I’m trying to understand why my autistic son says very few words, mostly parroted), and am curious how it works. Is he just incapable, or does he not like it, or is he worried he will get teased for being slow?

Hoping that my experience might help this parent to understand, I answered:

All I can say is from my own experience. I was verbal as a child, but had selective mutism (as if I had a choice.) A lot of the time I couldn’t talk. Those around me thought I was “just shy,” or later would get upset at me for being rude (in my teen years.) Neither were true.

The truth was I had the thoughts – whether in words or more often pictures – but frequently couldn’t make the connection between those thoughts and the spoken words.

It was as if there was one road that would take me from my thoughts to the spoken word, and very frequently that road was inaccessible. Despite the fact that I could speak at some times (yelling at my brothers for instance) there were other times (much more frequent) when I absolutely could not speak.

In fact, the more I wanted to speak, the less likely it seemed the words would come.

So if I were in school, I usually couldn’t speak. Even saying “hello” to people I really liked (my grandparents, for instance) was impossible most of the time.

As an adult, I really worked at rewiring those pathways so that now (at 41) I mostly can talk when I want to. I still struggle when I am really anxious, depressed, or uncomfortable, though (even in a place, and with people, that I can talk to on good days.)

When I was diagnosed, I was told I have an expressive language disability – but I write often and frequently. If people had allowed it when I was a child, and especially a teen, I would have written to them – maybe then they would have understood.

fireplace me

 

 

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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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