From His View: Rigidity & OCD

Every morning for the past several weeks, Wilson has come into our room, shut our closet door that was left open the night before, goes over to our window and says “There’s the moon!” and repeats this, until one of us says, “Yes, that’s the moon!”

He eats the same breakfast every single day. He has for years.  He chooses clothes from a handful of t-shirts and pants he will tolerate, often fighting for the same ones he wore the day before.  He will undoubtedly change into his favorite outfit when he returns home.  He requests the same songs on the way to school each day, and different ones on the return trip.

Many of us have passively used the term “OCD” (obsessive-compulsive disorder) as an adjective to describe a clean or controlling person. I’ve done it to.  Seeing what rigidity and actual OCD behaviors look like in my seven-year-old has been incredibly eye-opening. His rigidity has slowly and steadily become his biggest roadblock to progress over the past several years, especially when it comes to learning in any kind of group environment.

These kinds of behaviors run deep, they are very real and mean so much to him. They all serve a purpose.

Let me explain.

Rigidity, in some form or another, has always been present on Wilson’s evaluations, treatment plans, and goal documents since the beginning of this autism journey.  

From his view, everything is regimented, down to the way he plays with his toys. Over the years, I have watched these behaviors go from preferences, to strong preferences, to persistent preoccupations to full blown obsessive-compulsive behaviors.

He depends on order, routine, and sameness to feel calm.

Wilson has a plan for almost everything. He expects certain lights to be on, certain doors to be closed, and most certainly his familiar foods to be served. He smells his sandwich when I give it to him to make sure I didn’t switch the brand of bread.  For most meals in his day, he requests a sandwich (always cut the same way) with two pieces of additional bread. He cannot have one without the other.

Unfortunately, some of his very favorite foods we only buy occasionally, or we must hide them because he obsesses over them so much.  The obsession isn’t just in consuming the food, it’s where the food is put away (he constantly returns to check on it), who else is touching and eating it, and of course, dealing with it running out.   It’s heartbreaking to not provide something that he loves but at the end of the day, sometimes is just isn’t worth the stress it puts on him and us.

In his mind, things belong in a particular place. If he finds that something is out of place, he cannot move on with his day until it is corrected.  This becomes problematic when the item is something one of us is using, or a toy his sister or peers are playing with.  Sometimes we make a point to wash his clothes or sheets while he is at school, because depending on how he is feeling that day, those items out of place can be very difficult for him to work through.

When you hear about people with autism struggling with change, it is often things like this that may seem simple and small to most. A favorite shirt that’s missing, an empty box of crackers, or the salt and pepper shakers out of the cupboard.

We are constantly working on his flexibility and adaptability. Baby steps in an understatement.  When sensory sensitivities are involved, change must be slow and very intentional. He has worked programs with Applied Behavioral Analysis (ABA) therapy in areas like this over the course of several months to years. We practice a laundry program where he puts the clothes in the washer, then the dryer, then back to the closet. We talk through it the whole time, assuring him that the clothes will end up back where they belong.

We cannot challenge him in all these areas at once. Can you imagine how overwhelming that would be? A new brand of bread, his favorite tune unavailable on the way to school, only to come home to find the sheets off his bed, his sister had moved his toys out of their line up, and someone had eaten the last slice of watermelon?

We work on a little each day. One day at a time.

Some of you might wonder why. Just let him wear dirty clothes and eat watermelon all day! Truthfully, sometimes we do. We pick our battles. But this is just the beginning. He needs to learn to adapt and be flexible with his plans and his thinking. He needs to learn to cope with sensory input that isn’t ideal.  Why? Because I want him to be able to participate in this world and be comfortable beyond these four walls. Where sometimes the lights need to be on, and the doors wide open.

He’ll get there. One day at a time.

2 thoughts on “From His View: Rigidity & OCD

  1. Thank you for eloquently describing the very same struggles we face on a day to day basis…I feel like some days we are entrenched in tailoring our schedules, our routines and perhaps every thing we do, or say, around our son’s rigidities and OCD. I have been guilty myself of flippantly throwing the term OCD around. Until lately when I started to recognize that many of his rigidities had turned into startling OCD behaviours that control everything in his world.

    It doesn’t help that his twin brother has CP and low IQ so he thinks everything is a game and doesn’t understand boundaries, plus his younger brother is 3 years old, so unlike my husband and I that recognize that every situation needs to be managed carefully and precise, his brothers do not understand and usually only exacerbate the problem.

    School drop offs and bedtime are the worst times of day and quickly turn into nightmares. I admit, right now I’m still struggling to see all of this through his eyes and sometimes I’m still stuck in the mindset of “oh, it’s just a fit because he didn’t get his way,” or “he’s acting out to get negative attention.” It has not been easy to shift away from these ‘typical’ parental responses…maybe it’s because I so desperately want him to be a ‘typical’ kid. But I know he’s not, and there are so many wonderful traits about him, and I want to be able to focus on these instead of remember the nightly fits that turn into self-injurious behaviours.

    It is a daily struggle that I wrestle with (I think my husband does too) and it is all so fresh and raw still since he was diagnosed not even 6 months ago.

    I’m so glad I stumbled across your blog though, so many of your posts hit home and describe the struggles we’re currently dealing with. Thank you for being so open and candid and easy to relate to-it helps to know that as lonely as this journey seems, that another family has a similar struggle as us and maybe we’re not so alone.

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    • I am so happy you are here and have reached out too. I really does make this road less isolating and lonely. The self-injurious behaviors are hands down the hardest part of this life. I am so sorry to hear you guys are seeing that in your sweet boy too.
      It is very tricky to switch your mindset from the typical parenting ideas and approaches. I think that just comes with time. I have noticed that they more I learn about autism, the more patience I have for my son because I understand a little bit more and more what he is feeling and going through. Although I will never fully understand.
      Of course the exhaustion will break us at times. Don’t be so hard on yourself about that. You are an amazing mama. Excited to learn more about your boy. And I know the siblings are tough right now, (my daughter knows exactly which buttons to push to get a rise out of her brother) but it will get better. They will play and help eachother and advocate/look out for eachother down the road and that is so special!!

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