Normalizing sensory needs, A call to action

Warning: the first video could be a trigger for people with visual sensitivities.

What is your favorite view?

Think about why it really sticks with you. Is it the sounds or smells? Maybe it’s the colors? Are you calm or excited?

This is one of my daughter’s favorite views. It both stimulates and calms her, I think. I’m reading her body language. But I can tell she changes when she is lying on her back, in her big webbed swing.

When we built this wooden pergola for swinging, we didn’t realize we were also creating the perfect complementary environment for swinging and stimming at the same time.

I have been working this past year to really see the world her way, and this is one where I can totally understand how this can be interesting to the eyes, maybe stimulating, maybe calming even.

We all need to take time to think about our sensory preferences and aversions and develop the communication skills to express those with others.

We can normalize sensory differences by sharing what affects us, negatively and positively.

Sensory should not be a bad word

The highly sensitive autistic community doesn’t just have negative sensory needs. Some are sensory seeking, and the good feelings are the ones they want more of.

However, they are not the only ones that experience sensory differences every day. I do. And guess what, you do, too. Embrace it. Deal with it. If you can’t be ok with acknowledging a sensory difference in yourself, you won’t be able to accept it in others. If you aren’t aware of your own sensory challenges, maybe there are underlying needs that have never been addressed. In today’s world of openness and supporting differences, now is the perfect time to learn how to observe, how to manage and how to be more inclusive.

Our girl is still having to learn how to manage the stimming so it doesn’t overwhelm her senses. But, I have also learned we can and SHOULD let our kiddos stim, within healthy boundaries. We can then talk about how it feels, and we can talk through how to avoid getting too much at once, in case that can trigger other overwhelming emotions. Coping mechanisms can be about stimming in moderation. Just like I need to limit my chocolate in take, or how Bubba has a limit on playing Fortnite, we create structure to keep things balance. We are all drawn to something we really like, and we all work to balance those desires in our lives.

Applying a growth mindset to sensory needs

Here’s the aha!

We also all naturally avoid what we don’t like. Just like we choose more of what makes us feel good, we unconsciously avoid those sensations we don’t like. Crowded rooms, dirty dishes, the seam of the socks get rumpled between our toes, these are normal sensations. And we should talk about the why behind our preferences openly and not be afraid to say it “feels” different.

We all NEED to do this. We need to normalize sensory sensitivities because we all have them. We need to normalize talking about those “quirks” not as quirks but as needs. Through this we can acknowledge it’s ok to have these needs. No one should be afraid or embarrassed to say they hate tags or they can’t handle certain smells.

If no one is afraid to discuss sensory difference, then autistic people can feel free to share their extreme sensitivities without being dismissed or ridiculed. It will take time, but it starts with each of us sharing our sensitivities.

Sharing my sensory differences

Taste – My tastebuds have evolved the past 10 years to only like the heavy coffee and the bold wine. Not sure why, but it’s specific. Regular cheap coffee just tastes like water to me. The coffee that most people enjoy makes no sense to me. I have tried, but I can’t drink it.

Touch – I have developed many sensitivities in how things feel that I never used to think about. For one, ice cold water hurts my chest. I prefer room temp whenever I have a choice. Clothing must be soft. Somewhere around the time I had babies and I was thinking about their needs, I started only wearing the softest things for them, then I realized I preferred it, too. Now a plain old cotton t-shirt feels scratchy and I don’t wear them. I only buy the softest blankets for us all to snuggle with on the couch, and oh so many other examples.

Smell – This is becoming the offensive thing that will cause me to leave a room or a building. People’s perfumes really get me, and they never used to. The laundry aisle at the store gives me a headache. The smell of rotting plastic in the sun is a bad one. Makes me gag.

Sounds – This is my big one. All the world’s noises are in my ears. Maybe I used to drown things out better. But lately I catch my shoulders sitting up to my ears and I realize there are just too many competing sounds to synthesize. My family dynamics are definitely not helping in this category. Between the boy and the dog, chasing and laughing and barking and scratching the floor, I might be justified in feeling stressed.

I find at dinner time with the vent going on the stove and microwave beeping and the news droning and the dog barking and the iPad playing 5 Little Ducks… It’s no wonder after 9 hours straight of talking on video calls, I was entering my family room and immediately feeling overwhelmed. And just beat every day.

I have sensory challenges, and that does not make me weird. Maybe, by me always hiding those aversions, I’m hurting myself. Maybe, by not voicing my challenges, I am building up the possibility of lashing out at the ones I love. It’s a challenge, and sharing what I feel is a step toward normalizing these feelings with those who interact with me regularly.

Please note: I do not mean to diminish the extreme nature of the highly sensitive neurodiverse. I have seen the highs and lows in my own child. I call for action to begin the long evolution required to develop a more open community inclusive of all sensitivities.

Why it’s important to observe the sensory needs of others

It wasn’t until Make-A-Wish asked what her favorite things are that I really had to be honest with myself. Did I really know what she likes? Are we guessing all the time and if we do that for this amazing gift, will we get it wrong?

She was 6 going on 7 when we started that discussion. Six years into this life together, but did I know her preferences? I knew she hated the sound of hand dryers and automatic toilet flushes. I knew she hated being cold. I knew she loved chewing in everything and her stretchy blanket was a life saver.

I wasn’t sure about all her sensory needs though. I thought I knew, but they changed in different environments. For this to be a successful experience for the whole family, I had to really pinpoint the most important parts to make sure we could communicate for her, and allow her to say what little she could about her favorite things.

That’s how we ended up here, on a cruise ship in the Caribbean. And it was the best way we could have interpreted and addressed her needs. It was only on this trip that my confidence in truly knowing her needs was confirmed. And it’s also when I realized if all the sensory things are lined up, more of the good and very little of the bad, that she functions in such a calm and focused way.

Those 7 days were our heaven. She was warm, but not hot. She was rocking and stimming in the sand, and the glint of sun in the leaves. She could hear water and nature sounds, and we avoided crowds when possible. We had no need for the iPad to drown out the other stuff.

No, we can’t always live in paradise to avoid the bad sensory stuff. But we can use those breaks to reset and to experiment to find what we need. We can strike a balance. And we can speak up to share how it helped when it was going well.

Without this experience, I may not have been able to believe she could be so calm and centered. We had never seen it last for more than a couple hours. It’s been a metric for good and bad days. It’s also been a data point to consider more sensory adaptions throughout her life.

Our observing led to us being able to share, and that led to a positive experience. Everyone deserves that. People with sensory processing disorders deserve to be considered and understood when they express their needs. And for those who haven’t yet felt welcomed to speak their mind, if we learn to observe others, we can ALL be more understanding to those silently living with sensitivities, communicating to us in subtle nonverbal ways.

A future with awareness and empathy for sensory sensitivities

It’s only been since I was forced to take a break from the long work hours and I chose to be more present and aware of my kiddos’ needs, that I also was able to label my own emotions.

Combining the time to observe and reflect on myself with the positive difference I had seen in my girl got me thinking… if we all acknowledge and accept these unique sensory differences, then maybe society could be more empathetic to the highly sensitive. Society would work harder to create alternate experiences or have more choices to dial up or down sensory input, because we would ALL be talking about how it impacts us.

That is normalizing sensory needs. And it can start with thinking about why you have an affinity or an aversion to certain experiences. Normalizing will come from observing and reflecting, listening and sharing, and then making change happen.

A call to action: Be brave, Share your sensory differences

I invite you to share it. Talk about it with your kids and friends. Let them hear you say you have a real aversion. Let them see you are not ashamed of to explain to another adult why you cannot do something. Let them know it’s normal to have feelings about certain sensory things. Recognize their dislike of a certain food or activity, may not just be due to stubbornness. Support another person’s interest to seek a positive sensory experience. Share openly,  and teach others they, too can share.

Lead by example, sensory differences are not weird, they are normal.