Anxiety, High Functioning Autism and the Need for Control

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“Somebody forgot something…”

Always my first thought when I look at the phone at 9:00 in the morning to see it is my children’s school calling.  If the call comes in the afternoon, someone is either sick or in trouble.

So, the morning calls are always the preferred calls to get from the school.

“Hello?”

“Hi mom.  It’s Catelyn.  I forgot I was supposed to wear my pink Girls on the Run shirt to school today.  Could you please bring it in?”

My eyes were wide with how nice she was being.  I stuttered a little but finally got out, “Sure!  I’ll drop it off shortly.”

“Okay.  Bye.”

“Bye.”

I stopped what I was doing and went into Catelyn’s room.  I walked to her dresser and pulled open a drawer.  Then let out a sad sigh.

Anxiety and High Functioning Autism

When she was younger, every drawer was assigned a function.  PJ’s, top left drawer.  Socks and Undies, top right drawer, etc.

“Put your laundry away” is one of the chores I assign each child.  I wash, I fold and place the clothes on child’s bed.  After reminding, Cate will put her clothes away.  As she wishes.  Gone were the days of assigned drawers for clothes.  Every item goes into the same drawer.

About a year ago, I decided to find organization in her drawers.  I put the PJ’s back into the PJ drawer, shorts in the short drawer, etc.    I placed bins in her room organizing her toys.  I put a new shelf in her room for her new bins.  To me, her room was perfect.

An hour later she had come home.

When she realized what I had done, all I heard was screaming.  Stuff was being thrown, drawers could be heard moving in and out.

I went upstairs and looked in the hallway.

The bins I used to organize her toys were in the middle of the hallway, along with the shelf.  When I looked in her room, her clothes were dumped out again all over her bed.  Cate was crying, wildly throwing clothes back into random drawers.

I was shocked.  And so, so sad.

I realize now I had changed a part of Catelyn’s world without her knowledge or consent.  Where I thought she would be pleased, she actually felt out of control.

I was reminded of that day when I went searching for her pink shirt she needed at school.  It took a lot of looking and a long while, but I finally located it.  I pulled out the wrinkly shirt.  Then shoved the rest of the clothes back in their randomly assigned drawers.  I called for Declan and drove the shirt to her school.

NEED for Control

Parenting Catelyn is so incredibly difficult.  I do not always fully understand what she is going through.  In the past, we have worked through behavior charts based on rewards and consequences.  We provide praise, we went through the “1, 2, 3 Magic!” to help gain preferred behaviors.

But they do not work for Cate.  Cate doesn’t mind sitting in time out.  I send Cate to her room, which she doesn’t mind.  Her room has been emptied of its toys at times and she still is not fazed.  She creates her play in her head.  Cate could care less about getting an allowance for doing chores.

The immediate response is to discipline.  Bad behavior = consequence.  Not just for me.  Cate interacts with coaches and teachers as well.  Her need for control doesn’t stop at home.  When asked to do something that violates her area of control, an extreme reaction will unfold.  And then she will face sports or school related consequences.

With High Functioning Autism (HFA) Cate appears to function well on many levels.  It is hard to see that her behavior, her meltdown, is a form of an anxiety attack.  For me, and for anyone else.

Catelyn’s need for control is so high.  If Cate does not have control of her world her anxiety spikes.

I must always keep in mind that Cate is NOT going out of her way to not comply with something I am asking her to do.  She simply cannot overcome her need to be in control.

Cate will continue to work with her therapist.  I will continue to try to explain her behavior to those who interact with her and be her buffer.  And hope the work and understanding we provide to Catelyn today will help her find the ability to be flexible and compromise with the world around her in the future.

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22 thoughts on “Anxiety, High Functioning Autism and the Need for Control

    1. Thank you so much, Clair. This one was an important reminder for me as well. My initial reaction to her meltdowns, at times, is to want to discipline. But I have to keep reminding myslef to take a step back and remember – she looks fine, but there is something else going on. The more we collaborate on a problem or decision, the better.

    1. Yes – as a parent I want to have the control. On a high level, I do. With her HFA, she needs to have control. I can be flexible and give her areas in her world that she can control. She can have messy drawers if it makes her feel better. Definitely a delicate balance (that I work to figure out every day!) 🙂

    1. Thank you! Catelyn is so hard to parent. I have parental responsibilities and she has a need to control her world (which greatly affects my parenting). Definitely a frustrating, delicate balance!

  1. Isobelle is away for a couple of days so my daughter and her husband are staying in a stately home for the night. They couldn’t tell her, because she expects everything to be the same while she is gone.

  2. So tough! In a way Cate’s autism seems harder than Declan’s. She can do so many things, people will tend to forget that she has limitations she can’t help. With Declan (and Ben) once people know it’s autism and NOT bad parenting(grrr) the kids get a bit of a pass, more understanding. It’s a good reminder for all of us to not jump to conclusions. Someone may appear rude or contrary but they might just have HFA and need a little compassion and understanding.

    1. Exactly! Yes, Catelyn is much harder to parent than Declan. Declan has gotten so much support and understanding because his limitations are more apparent. Catelyn is on the same spectrum, but is higher functioning. When I describe her as an individual with autism, I get the skeptical looks. My point in saying she has autism, is to let others know she needs support too. She does not have social skills and will come off as rude – to young and old alike. She will talk back, she will meltdown. But she is not trying to be bad. She just cannot have her world altered without chosing for a change. It’s hard – for others and for myself at times – and I need to remind my parent self that she is working through something and I need to help. I see her exasperate others – and I need to be her advocate so she is supported and helped – as Declan or Ben would be – and not ignored or disciplined by others.

  3. Great example of learning to let go of the things we can’t control to allow peace in our homes. This is one of the hardest things to do, especially for mother’s. Thanks for sharing your life, I’m learning a lot from your courage.

  4. Hmmm. If you changed the name from Catelyn to Eli, this would be written about my 12 year old son. The autism spectrum isn’t something we’ve really considered because he is generally a social kid. Because this behavior is so similar, your post made me pause. Here’s my question to you. If Eli is on the autism spectrum, does it matter (meaning would we parent differently)? Can you point me in the direction of some good literature on High Functioning Autism that might help give us some perspective? One thought that occurred to me is that anxiety is anxiety, and that might be the condition that causes the similarities.

    1. Sure! Here are some links to articles that I have found useful to reference. The last is by Mark Hutton and he has an online book that you will see on his site. I purchased it and have found it useful (although I hate reading online books – I prefer to hold mine and turn the page).
      https://www.verywell.com/why-high-functioning-autism-is-so-challenging-259951
      http://luvmycrzylife.com/2013/07/high-functioning-autism-characteristics/
      This one is directed towards girls, but a lot of the characteristics carry over to boys as well: https://taniaannmarshall.wordpress.com/2013/06/22/first-signs-of-asperger-syndrome-in-young-girls-pre-school/
      http://www.myaspergerschild.com/2013/04/list-of-symptoms-for-high-functioning.html

      Catelyn is very social as well, but her play has been very inflexible in the past. Namely “her way or no way” kind of thing. And playmates didn’t stick around. From a parenting perspective – Yes, my parenting did change somewhat. You see, for Declan who is more in the middle of the spectrum, I give a ton of allowances. I don’t force him to do certain things. He gets tons of support and understanding for his needs. When I learned Cate was also on the spectrum, I took a step back. I had been SO frustrated with her and I was disciplining and disciplining and getting nowhere. When I realized she was experiencing the world a little differently, I gave her more room, per se. I let little things go – and tried to collaborate on decisions and events more. I try to work with her instead of making her do what I say and then having a meltdown. Let me know if you would like any other info! Hope this helps!

  5. Your daughter is SO like me! Have been an over-acheiving control freak since I started kindergarten. Top of my class in acedimics (not P.E.) and isolated from other kids. Mostly because I lived out of town in the country, but kept one close friend since grade school. (She turned out to actually be my second cousin- but I don’t hold that against her!) Do not get along with most of my realatives. Tend to be an outsider. Always can intertain myself in my mind.

  6. but what do you mean by a need for control – if she needs her cloths to be like she puts them – is it because of needing control? Maybe she finds an order in the chaos?

    1. Cate needs to have things the way SHE has them. I also put bins in her room to help organize her toys. She dumped them out and threw the bins in the hallway. A couple of weeks later, she got the bins and arranged her toys. It was okay then because SHE made the choice. I imagine one day she will organize her clothes. And it will be okay then because SHE chose to do it, not me.

        1. Absolutely – In regards to the clothes, I was just trying to help. I had no idea she would be so distressed. She was diagnosed after the clothes dumping incident, as well. I took her for help as she was becoming depressed and it saddened me to see her feeling so bad. Therapy has definitely helped. And now we work together more. Her clothes are still in disarray – to me? No big deal. If that is how she likes it, then okay. Some things like eating or wearing a coat – she needs to do those things. So we colloborate on decisions now. We really have to work together to meet both of our needs.

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