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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: To Dream Again

This morning was “The Summit” church service at the wharf – were once a year all three campuses and five services of our church get together for church, worship, and lunch after.

It rained a lot yesterday – which is kind of a big deal since we had a drought all summer with only half an hour of rain in about 2.5 months. Today was sunny and the skies were clear (which also hasn’t happened for much of the summer.) It was a nice day for outdoor church.

While I was there I once again noted something that surprised me. I was watching the parents with young children, and the older children at the awkward stage, and was surprised once more to acknowledge that I don’t want children.

Stressful, exhausting, difficult…

It is a foreign concept to me to not want children. Until a little over a year ago, even after years of infertility and a traumatic failed adoption, having children of my own was the main desire of my heart – even though I did have, and raise, and still have, my now adult son.

I would see other parents with their children and felt… envy, and sadness, and… lost, alone, forgotten. Other people had families – why couldn’t I?

It was another, and a major, characteristic that separated me from them – and I hated that separation. I still hate it, maybe, but at least I can see what I couldn’t see then: Children are overwhelming.

Beautiful, and fun, and worth the effort? Yes – but…

Children call attention to their parents. Always. You see the children, you see the parents – and there is advice, and there is judgement, and there is a lot of stress that comes with the job.

And I can’t be watched.

As I sat watching the parents dealing with the children I remembered that. I can’t be watched, and children call attention to their parents. Always.

I can’t be watched, for when I am watched I operate from a different part of my brain which significantly drops my functioning level to the point where I pretty much always fail. So having children – no matter how much I wanted them and loved them (and I did) – was a recipe for failure. There was no way beyond it for I can’t function when I am watched, and parents are always being watched.

As I began to accept this revelation – which has come to me in the past, but I always fought against (“if I could only try harder, or do things different, or research more, or… maybe I could” – but no, I can’t function when I am watched, and whatever else a parent faces in raising a child, they are always watched – and if they don’t want to be watched, there must be something really wrong with them, and they shouldn’t be trusted with their children to begin with; right?)

As I began to accept this revelation I began to realize that if it weren’t for the memory of the trauma of losing ‘my’ children, and without the fixation of a lifetime of wanting children (possibly because that, in my eyes, was the measure of success and ‘normalcy’ – to be a ‘good parent’) I might even be able to admit that I am happier and calmer with my life as it is now.

The traumas are there, and they do cause me to struggle a lot of the time – but this thought that I could live okay without children… it is mind blowing. It is to turn completely in the other direction, and accept that it might be possible to dream again.

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Autism: Not A Great Chess Player

When I was a teenager, I had a friend who wanted to play chess with me. He taught me how to play, and I would look at the board, and know how each piece was supposed to be moved. I would play the game, and sometimes I would win.

For many years I would look at a chess board with longing, yet did not spend a lot of time playing with other people (or playing alone.) You see, while I could imagine myself thinking through the strategies, and playing the game well, the reality was quite different.

I don’t actually have a mind that can focus, or make logical decisions playing such a game as chess. I have a great mind for imagining, and so I am able to picture myself as a great chess player, very much focused and enjoying a game that I have a good chance of winning – but I have found over the years that isn’t actually who I am.

My mind is so great at imagining that I can frequently bring myself to believe that I would be really good at something, and/or would really enjoy doing something, and I can actually hold that belief until the time when I experience it for real only to fail. At that point, I wonder what went wrong. I was so sure that I would be good at it that it never crossed my mind that I wasn’t built for such things.

There are many things in my life that I can imagine myself to be good at:

  • parenting
  • playing the keyboard
  • crafts such as sewing, knitting, painting
  • gardening
  • farming
  • home renovations
  • woodworking

But the reality is that though I have had years of practice and even training in many of these areas, I am still not at all good at them. I suppose I just wasn’t built that way.

And the thing is, because I can imagine myself to be really good at these things that I feel I would love to do and be, I find it incredibly frustrating, and depressing, to be faced with the reality that this is not who I am.

In fact, the majority of who I have imagined myself to be throughout my life, has turned out to be things I am either not at all talented in, or dislike doing altogether. It leaves me unsure of who I am, or what I would like at all.

Four years ago I took a course in Residential Construction (a foundation course for carpentry apprenticeships.) I did really well in the theory side of the work, and well enough on the practical, that I completed the course top of my class (94% average in a class where nearly half of my classmates failed.) Because my entire immediate family (mom, dad, brothers) were really skilled in this area, I could very much imagine that I would be good in it as well. However, despite my high marks, I was not at all equipped to work in that environment. Under such stress, pressure, and exhausting work, my functioning level dropped to the point where I couldn’t do the work at all.

Had I done well, I would have been at Journeyman level at this point in my life, which I imagine would be a decent place to be.

It is the same with parenting. Throughout my childhood, while I couldn’t relate to any of the children around me, I did love children, and babies, and… I could imagine myself as a great parent with a lot of children. I loved dolls. I wanted children. I even took a 2 years Early Childhood Education course at college and graduated with Dean’s Honours.

I ran a daycare. I home schooled my son. I took and passed an adoption home study, and had three high needs children placed with me for adoption. And… I failed.

The truth was, I could imagine myself as a great parent, but most of the time I was overwhelmed. I could not relate to other parents. I could not relate to the social needs. I was overwhelmed by the behaviours. I was not relaxed. I was not calm. I didn’t even like the world enough to feel confident sending my children out into it.

My concern now is in knowing that my imagination is capable of seeing myself successful and enjoying many different things in life that in reality would not be good for me at all, how could I possibly decide what would truly be good for me?

I thought I could be a good chess player, but I am not. So who am I then?

ResCon

 

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Autism: If I Were Well

It had been a really rough week. Hard to believe two weeks had past since we lost my son’s nearly nineteen year old cat. The pain was raw, and everything bothered me. I get like that when things hurt; my already sensitive nerves are overwhelmed by every little thing.

I spent the day before steaming with anger and frustration over things that I was unable to express. Communication is hard at the best of times – and this was not the best of times. It isn’t that such things only bother me when things are hard, but that the irritation I am able to suppress and redirect when I am well (knowing that I am very sensitive about such things, so it really isn’t the fault of other people) wants to come out in an explosion when my functioning is low.

The struggle didn’t get shared, however. I am getting better at holding it in until I can find some way to solve it, or express it better. Since my ability to express myself still isn’t close to the level where others can accept what I am saying (or even understand my point) I often find myself holding so much in that I am at the edge of being overwhelmed nearly all the time. The tiniest things can throw me over… even then I rarely explode, but do spend a lot of time alone and in tears as a result.

Though the plans had already been made, I still woke up that morning full of frustration over the things that had bothered me the day before – again, more because I couldn’t figure out a way to solve or communicate the issue than that it was actually the fault of another that I was feeling that way.

The plans had been made with my son, however, and were really important to him. We were to go downtown for a few necessary supplies, and then head out to the local SPCA with the hopes of adopting a cat.

I guess he learned that from me, and I in turn learned it from the loss of my Chiku. I got Chiku a week before my son was born, and she died a week before she turned 16. In the part of my life that I remembered, I had her longer than anyone at that point, and the loss hit me hard. They always do. I was determined that I would not get another cat as the pain was too much. That is the year I ended up adding three new cats to my home!

Then when I lost Gryff last summer, I knew I needed another dog. The pain was intense, and I could hardly even get up when Clara was given to me 15 days later. It hurt, but I knew she was necessary. So when my son lost China, the first week the pain was too much, but he knew that he would need another cat. He learned that from me.

I didn’t think it would be so hard to find a cat at the SPCA (there were 5 he was very interested in from the ages of 2years to 13years old – all were gone before we could even think about getting there) and I didn’t think it would be so easy to adopt a cat from the SPCA.

On the Friday afternoon, six kittens had been posted on their site, and three were gone right away. The three left were brothers, and all three had the personality my son was looking for – so we got there on Saturday half an hour before they opened, and waited in the car.

My husband came with us for all of this, and though in my mind he spent most of his time in the background, the very fact that he was there helped to calm me. He does that – especially when I am out.

In the main room were four kittens, two of them already spoken for. They were really cute – 10 weeks old, and very energetic and curious. My son and I spent quite a while playing with them before asking to see the other kittens we had come for.

We were taken to another room where we were greeted with meows from a small orange kitten. The two orange ones were also spoken for. My son walked over to a cage that was open, and a black and white kitten came straight to him. “He is usually very shy,” the worker said, “this is very unusual.” My son and that kitten spent the rest of our visit together, while I played with his brother, and pet some older cats in the room.

Obviously he is the one we decided to bring home – a six month old tuxedo named “Rocky Road.” (My son changed the name to Nicholas.)

And you know? Despite the pain, and the grief, and the frustration, and all the negative emotions and struggles I was feeling leading up to that moment, I really enjoyed spending that hour at the SPCA playing with those cats. And I thought, “I would love to volunteer here… if I were well.”

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The Adoption Part Five

This post is in continuation of The Adoption Part Four.

Doing the wheat free/casein free diet in addition to the sugar free/dye free diet, also made a very strong difference for the older two (the younger had health issues, and was off dairy when she came to us. We also kept the wheat and sugar out of her food, but for health rather than behavioural issues.)

It wasn’t like I took out wheat and dairy, and gave them nothing in place of it. They had oatmeal most mornings for breakfast. They ate rice, chickpea flour, quinoa, millet, corn flour… I replaced wheat with other grains. They still had breads and such, though they were made slightly different. They had soy milk, goat milk, and we tried other milks in place of cows. I sweetened their foods with applesauce, rice syrup, sugar free berry syrups…

And they had great appetites. They ate a lot, always licked their plates clean, always thanked me for the “tasty” meals. It was a lot of work, especially when going out, but it was worth it. Again, it would have been my autism that kept me so thorough in this. Without the allergies, I guess most parents would have given in, at least on special occasions, but I never did.

Though they ate well, and had energy, the older and younger child were very thin. I did not hide this diet from anyone. The social workers, specialists, doctors… everyone knew. I asked for help in finding foods that would help the children to gain weight. Mostly I was dismissed – some children are just small. Others said to feed them the wheat and dairy. Finally we got nutritionists involved. They were looking into reasons why the children would be so affected by these foods before the children were taken.

Even so – even though I replaced each food that was removed. Even though everyone was aware. Even though I was the one who requested help for the children’s weight gain. Even so, when they were removed, they called it nutritional neglect. It wasn’t right.

Still we had the issue of the rages. While reduced, they were still there, still dangerous, and I was still being judged for them. I was afraid of the spanking, that we would be found out, and lose the children. I needed something else that would work as well, but not get us into as much trouble.

With my birth son, in addition to spanking (which was only done occasionally until the age of 8, when other methods became more effective) I used black licorice pieces for talking back (he hated the taste), or removing electronics. Both were very effective for him, but then again, aside from school refusal, frequent refusals to bathe and brush his teeth, and the likelihood of having Aspergers, he was not a difficult child to raise.

With my daughter, (who had Fetal Alcohol – all three were diagnosed post placement, Reactive Attachment Disorder, and a high likelihood of being bi-polar) there was nothing I could use or remove to reason with her. With the sugar free diet, bad tasting candy was out, and she liked most foods. The one thing that worked (and again, I got this idea from other parents, not from myself) was a tiny dot of cayenne pepper on the end of my finger, and placed on her tongue.

Again I would threaten her with it first – “Stop, or you will get pepper.” Then I would count, “That’s one….. That’s two…..” and again 90% of the time she would stop before three, saving us from hours or days of rages, and a lot of trouble. Again I hated doing it, and while it was not directly said, I was pretty certain it wouldn’t be allowed.

It was by accident that I tried the third idea. It was a hot summer. A very hot summer. We were on our trip across the country visiting my family, and staying in my mother’s home. She lives in a triplex, with one not so great water heater to share between the apartments. I was giving my daughter a shower (age 5 at the time) when the water turned cold. She had shampoo and soap still on her, which I needed to rinse off. She started screaming, and I told her I was sorry about the cold, but if she stopped screaming, I could get finish and get her out fast. She stopped.

cold water

For several weeks the cold showers worked for rages as well – again with the threat first, the count, and only as a last result, the follow through. Whenever possible, I used this in place of the pepper or spankings (which I had mostly stopped by that point.) Again, it was a very hot summer, or I would have worried about the cold causing health issues. I felt this was less dangerous, and less controversial than the other options, but still I was searching for less invasive methods. Still I hated doing it.

When the children were removed, all of these were deemed child abuse. While I don’t fully disagree with this assessment, I think a lot more could have been done to help. Telling me these things didn’t work, when they did, was not helpful. Finding me an alternative when I so often asked for help (and not seeing those requests for help as a desire to end the adoption) would have been much more useful.

I was open with a lot of my struggles – and with the fact that I loved and wanted to keep my children. I was open with most of it – and at the very least, the issues which brought about the discipline methods I was trying to avoid. As the children’s ministry, I feel they should have done a lot more to help me come up with reasonable ways to deal with the rages; with reasonable nutritional diets that would help the children grow, but not add to their behavioural issues. I believe there was a lot more they could have done, before removing the children, and causing more than two years of improvements in attachment and behaviour to be torn away.

This is, in full, the part I played in the removal of my middle child. I know who I am, and knew I needed to find other methods from the beginning. The ministry might say that I am in denial of the part I played – but that is not accurate. I know who I am. I wish they understood there was so much more that they could have done (and so much less in terms of damage) if they could have helped us rather than blaming us. We needed the support, not the judgment – and the children needed the consistency.

Despite my struggles, they were still thriving in our care, and I do not believe having them removed was the answer.

For my youngest daughter, her issues were mostly health related while she was in our home. I did not have a lot of behavioural issues from her (though she has apparently had many since returning to foster care.) For her, time outs or time ins were sufficient to end behaviour. Transitions were her hardest area, but even then she would usually stop screaming for me if I told her that I couldn’t drive while she was screaming, or we would crash (that didn’t work for my husband, but he could ignore until they were nearly home, and she would stop on her own as he turned onto our street.)

Aside from the diet, which everyone was fully aware of, there was nothing that could be considered abuse towards my youngest child.

The older boy was quite a bit more of a challenge than the youngest, and quite a bit less than the middle. I will have to save his story for another post.

 

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