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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: 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: Train Crossing

Well the day came, and since I didn’t have the bus booked I had to take the van. Well, I guess for that part I would have had to take the van anyway, since we only book the bus to take us home. After all, if my husband is going into town anyway, why would be spent $3.50 in bus tickets to take us to the same place at around the same time?

My husband had offered to take us home after, so I wouldn’t have to return (in the dark) at night to pick him up from work when he was done. I don’t like driving in the dark. I don’t like driving.

This was the day I had set aside to do all of my Christmas shopping… well, most. My son was coming with me, so I would have to pick up things for him on another day. Everything else had to get done. When would I get another chance to do it?

I have really been struggling with Christmas this year. All the commercialism makes me feel sick. I look in the fliers and they seem to be telling us that we should be spending hundreds of dollars on each gift (if we really loved our family!) Hundreds! What ever happened to the $20 maximum for the closest people in our lives? Or better, the orange, Christmas candy, and mittens that used to fill stockings a hundred or so years ago.

When did Christmas become about going into debt?

The more I look in these fliers, the more I hate the idea of buying anything. Such pressure. Such greed. This is not what Christmas is supposed to be.

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But like most other people I do have people to buy for, and I don’t want them thinking I don’t care about them. So I went out looking.

As I left the thrift store where my husband works, a train started going by on the tracks we had to cross to get to town. I was first at the stop sign on my side – needing to turn right to cross the tracks. Across from me was the Handy Dart – the bus I had planned to book to get us home. It was being driven by a person my son and I both know. She was first to the stop sign across from me, and had arrived there before I had.

On the road perpendicular to us – the one that crossed the train tracks – there was no stop sign, and there were several people stopped at the train crossing there.

I was sitting there, in the driver’s seat of my van, panicking for two reasons:

  1. Knowing who I was, the driver of the Handy Dart would recognize me sitting in the driver’s seat of my van, and question how I qualified to take the Handy Dart (to be fair, in my application for this bus I did say that I could drive, but that it causes me a lot of anxiety, and I still was approved.)
  2. I struggle with the rules for a two way stop where there is no stop sign in the other direction. She was there first, so I wanted to let her go first – but she was turning left where I was turning right, and in such situations in the past the people turning right went first regardless of who got there first…

Perhaps I shouldn’t care what other people think of me, but I do. I care a LOT! So it bothers me when I think that other people might think that I don’t belong somewhere, or shouldn’t qualify for something, or…

My son said that if anyone had been in the van with us, they would never question that I should qualify for the Handy Dart (he has also said that in the past while we were standing outside the thrift store waiting for the bus, and I was so anxious I couldn’t think – to be fair, the bus never showed on that trip, so the panic was justified – I ended up having a full meltdown then.)

Anyway, I hesitated for a second, and when she didn’t go, I did. But the panic never let up.

I wanted, and had planned to get all of my Christmas shopping done that morning, but after the experience I had waiting for the train at that stop sign, all I wanted to do was be home with my girls. We did go to every mall in town (we live in a small town, so when I say mall, there are only a few stores in each) but I didn’t get any shopping done.

I couldn’t.

And the rest of the day I was anxious, teary, and emotional. Sometimes I think I shouldn’t be driving at all. It is all just too much for me.

 

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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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