Month: March 2021

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Autism and the Sense of Sight

Autism and the Sense of Sight

First off, please remember that what I share on this blog is our life. I’m not a doctor or therapist or any other professional. I’m sharing ideas that might work for your child – but you need to decide what to try and what to ignore. As I’ve said before, what works for Casey may not work for Rob and vice versa.

On to their sense of sight…

Since they can’t tell me exactly what they see, I rely on what they draw to tell me how well they see. They both have hyper-sensitive sight, meaning they see much better and more details than most of us.

Casey can color and paint the smallest details on her projects – but only if she sees the need to do that. 🙂 Often, she is in such a hurry to move on to the next project or fun thing to do that she rushes through her art. I have only a few examples of the details she sees in things.

Rob, on the other hand, can use his iPad to draw amazing pictures with details in the cars and characters that I’ve never noticed. The little things that tend to blend into the bigger picture, he sees. He used to use the “paint” program on my old computer to draw characters from the Wizard of Oz – and every one would have little details. Dorothy’s shoes had sparkles, her basket had weave, her dress was perfectly spaced blue and white checks. The lion had a puff of long hair at the end of his tail and the scarecrow had hay sticking out in different places. I so wish more of those pictures had gotten saved and printed. But, when Rob is done with his drawing, he immediately erased it. I only have a few of them. 🙁

His drawings of trucks and cars include the smallest details of the hub caps of each car. He knows the license plate numbers of several vehicles. He can tell from several blocks away if a car coming towards us is someone we know. I’m lucky to notice as we pass!

When he uses sidewalk chalk, he draws each letter in calligraphy. He can write beautifully – again, when he wants to. Most of the time, he seems to think what I’d like him to do is pointless, so he is fast. But, when he writes thank you notes or signs cards, he carefully and perfectly signs his name. He can make elaborate creations with his Legos, but often sticks to his trees and power poles. (He still stares at power poles with a fascination I don’t understand. I’ve wondered if he hears a hum from them.) Wind turbines are especially fascinate him – he could watch for hours.

Rob loves running water – ocean waves, waterfalls, creeks. I know it is incredibly relaxing to him, but I’ve also discovered that he loves them because of the patterns he sees in each. He sees colors and designs where I see running water. I love waterfalls for the beauty I see, but he sees a much deeper beauty in each. No matter how small, he has to stop and stare at running water. A few summers ago, he actually went wading with us (it had been years since he did that!) and he just stood and stared at his feet.

When I got closer, I could hear him talking. He was naming all of the colors of small pebbles he saw by his feet. Again, I saw some colors, but to me, they were mostly brown or tan. Rob saw so many more colors than I did, until I finally slowed down and really looked. He will stare at a fire – flowers blowing – blades of grass. He is in his element in nature.

Something else I’ve learned. For Casey and Rob, looking into someone eyes is very distracting. They have both told me that eyes move. I couldn’t understand what they meant until I really studied how the eye works and understood that they were seeing the pupil constantly move. They also see the different colors in people’s eyes. You may think your eyes are blue or brown, but to Casey and Rob, there are lots of colors in them and those colors are distracting.

I’ve often heard people with autism say “I can listen to you or I can look you in the eye.” That is definitely Casey and Rob. That is one of the first things I try to explain to new people they meet – they are always listening, no matter what they are doing. Please be aware of this when you talk around your child. Even when they are completely occupied with something, they are listening!

One thing does surprise me with their eye sight. I know they are both very sensitive, but sunlight doesn’t bother either of them. They have sun glasses and might wear them, but they don’t insist on it. I would think that if they see so many details, that sunlight would be hard to handle, but they don’t seem to care.

I do know a few people with autism who choose to wear dark glasses as much as possible to try and block out some of the constant details that are always around them. Rob had a really hard time in stores as a little guy because he saw the lights constantly flickering. Casey would have meltdowns because the flickering lights were making her feel sick. If your child has a hard time in stores, try putting sunglasses on or letting them wear a hat they can pull low over their face. Movies theaters are also difficult because of the flashing lights in the dark room.

When your child has a meltdown, try to write down where you are, what is around you – you may discover their problem is too much visual stimulation and they can’t get away from it. This may also be the cause of your child wanting to walk with their eyes closed. Bumping into things is easier than dealing with the constant stimulation of colors and shapes around them.

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Autism and the Sense of Taste

Autism and the Sense of Taste

Ever since she was small, Casey has been able to eat weird combinations of foods.  One day when she was about 7, she ate almost half a pound of raw hamburger.  I was thawing it and she got a spoon and ate all she could.  I’ll be honest – I almost threw up when I found her. 

She would grab a spoon and a container of chip dip and eat it like pudding.  She ate anything and everything.  Now, I know that her sense of taste is definitely hypo-sensitive.  It’s only been in the last few years I have found a few things that she doesn’t like. She won’t eat pickles of any type.

She doesn’t care for sliced tomatoes but loves the cherry ones. She is not a fan of chocolate and will only eat a few types of chocolate candy. She doesn’t like chocolate ice cream, pudding or milkshakes.

Last year, she discovered salt and pepper. She had often put salt on a few things, but now… Now…. It’s a battle to control her salt usage. She covers food with pepper. I’ve even switched the salt and pepper shakers so very little salt comes out. This over-seasoning is more proof that her sense of taste is definitely hypo-sensitive.

Rob only puts salt on fries and chicken nuggets. He ate almost everything as a little guy. I think it was just before puberty that his sense of taste changed. He ate pizza, spaghetti, chili – and then he didn’t. It wasn’t a gradual process. He just stopped. I don’t know if his anxiety increased at puberty and caused more sensory issues or if the sensory issues caused his anxiety.

Either way, he became a picky eater. For years, he refused to try anything new and nothing gooey could be on his plate. Luckily, he ate most meats and always his fruits and veggies.

He is willing to try new foods now – even gooey ones. It doesn’t always go well as I’ve seen him gag on the tiniest bite, but he does try. I never force him to eat anything, though – that’s a recipe for disaster and I sincerely hope you never let anyone force your child to eat. Rob has had that happen to him. He remembers that.

Rob’s issues with foods aren’t necessarily caused by having a hyper-sensitive sense of taste. His are more likely the texture of the food and not the taste, or lack of it. He does tend to stick with foods that are more bland so there may be certain things that he tastes more strongly.

He tastes sour things more strongly than she does and absolutely cannot stand to taste anything bitter. Bitter doesn’t appear to bother her as she chews medicines with no issues. She loves sour foods – foods that you and I wouldn’t be able to eat, she has no reaction to.

If you want to discover how your child’s sense of taste is affected, start keeping a list of what he or she will eat – what foods they avoid – and if they like to add salt to everything. Once you start comparing the foods on your list, I’m sure you will find whether your child is hyper (too sensitive) or hypo (not sensitive enough) to each taste – salty, sweet, sour and bitter. This might give you an idea of what type of foods to offer your child and what to stay away from.

Honestly, it never occurred to me until recently how strongly Casey’s sense of taste is affected. As I wrote this, I kept thinking of other foods that prove just how little she tastes. She is a good eater (and tends to overeat, thanks to one of her meds) and I just never stopped to think about how she eats. I always thought Rob was the sense of taste that bothered him, but after really thinking about it, Casey is the one with more issues. How I never noticed that is beyond me.

Hopefully, once you see a pattern in how your child tastes, you can come up with a plan to help them experiment with new foods. Just remember, taste is also affected by smell, touch and sight, so you may have to do more digging into those senses before you really know what is going on with your child.

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Autism and Sensitive Ears

Autism and Sensitive Ears

Since sensory issues are one of the questions I hear most often, I thought the next few weeks, I would talk about each of the six senses and how they affect people with autism. Remember – senses can be “hyper” which means too sensitive or “hypo” which means not sensitive enough.

Because how sensitive their ears are cause Casey and Rob so many issues, I’ll start with hearing.

When Casey was younger, she kept her fingers in her ears any time we went some place new, until she knew what kinds of sounds might be present. It wasn’t just loud piercing noises that could cause her to scream in pain – even low, rumbling noises could be terrifying to her.

It took me a long time to understand why she hated certain restaurants so much. Because of her screams, we just avoided going to them, but finally, I heard it. The HVAC systems were running and she couldn’t handle the noises they made. Honestly, I could barely hear it and probably would have never realized it, if I didn’t happen to see her looking up at the vents with a terrified look on her face. It took years before we attempted those places again (thank God for drive-thrus! 🙂 )

I avoided using the air conditioning in our car when she was young because it was guaranteed to set off screams. Even on the hottest days, we left windows down. I tried once to turn it on and she panicked and tried to get out of the moving car. Again, it was years later before we used it and now, she doesn’t have any issues with it at all.

Casey was 5 when we decided to try Auditory Integration Therapy. At the time, it was best hit or miss, but her dad and I both felt like it was something we had to try. My mom and I took the three kids to Cincinnati for two weeks. Casey was 5, Mandy 3 and Rob just 9 or 10 months old. Yep – we lived in a hotel for two weeks. Casey had hour long sessions twice a day. And she didn’t like it – at all. After a few days, she settled down for them but still was happy to be out of the room.

She started on Monday. Friday evening, their dad and my dad came to spend the weekend with us. Saturday morning, my dad asked Casey what she wanted for breakfast (we always asked her questions – even when she never answered) and she said, “Donut!” I wish there had been a camera on us – four adults were in complete shock. She never answered questions! I couldn’t get her a donut fast enough – I would have given her a box of them if she would have asked.

Over the next several weeks, she needed to cover her ears less and she began to speak a little more. Her words were clear and appropriate. Her painful screams diminished. For Casey, AIT was a success. She still covers her ears at times, but she has learned what might hurt and doesn’t panic and run like she used to.

Enclosed areas with crowds of people are hard for both of them to handle. The dull roar of people talking – the sounds of people moving around – it’s just too much for them for very long.

Rob never put his fingers in his ears like Casey does. When he was little, he wore ear protection (like hunters do) everywhere. The fire drill at school could send him into a curled up ball of tears. Train whistles, parades, certain music – it was all painful to him. He wasn’t able to filter out background noise to hear what I was saying clearly, so many of his words were mixed up. Sammerich (sandwich), to-par (pop tart), and so many others that he switched like first and last letters. He simply couldn’t hear the words clearly.

As he has grown up, his words have become much clearer, but he still struggles with new things. He still doesn’t seem to hear everything correctly – I’ve discovered that by watching him try to spell things as he hears them. Again, this is constantly getting better and is rarely an issue now.

I am still very careful about loud noises around Rob. He doesn’t run from the shop vac, anymore, and doesn’t care about kitchen appliances (Casey screamed any time I used the mixer or sweeper) but loud trucks are sure to cause pain. When we went to a parade a few years ago, a bug truck blew its air horn and he about came out of his seat. He was anxious and scared, so Mandy, Cory and I took turns standing behind him with our hands over his ears so he could enjoy the rest of the parade.

I’m sure I’ve shared before that Rob is my little weatherman. I know when the barometer changes, he can feel it. He knows when rain or snow is coming. About a year ago, I finally discovered he feels it in his ears. I don’t know why or how, but that’s how he knows. His ears can feel the difference in pressure. He also doesn’t like wind – constant wind causes extreme anxiety for him and I’m sure it’s the constant sounds of it that get to him.

When your child is first diagnosed, it may be hard for you to know what is going on with their hearing. It took me a long time to realize what was going on with Casey – at that time, there weren’t a million books about sensory issues to read. Everything I did was by guess and hope for the best. I noticed it much sooner with Rob, as I was looking for it. He loved his headphones (they also provided deep pressure and he loved that) Casey has never liked headphones – whether to protect her from sounds or to listen to music. She absolutely will not use them.

The most important thing to remember is certain noises, even if you don’t hear them or they don’t bother you, are painful to people with hyper-sensitive hearing. Please, don’t tell your child to stop making a big deal of sounds. They aren’t “faking” anything, but simply trying to get away from something painful. A child with hypersensitive hearing may run from sounds, scream, keep their head covered, fingers in their ears or may refuse to go into an area that is too loud for them.

Please keep in mind that your child may have hyposensitive hearing also. They may not acknowledge certain sounds, such as an alarm, or voices simply because they don’t hear them well enough. Your child may not be ignoring you when you talk – they may not be able to distinguish what you are saying.

Everyone has certain sounds that they can’t stand (nails on a chalkboard, anyone?) but we learn to adapt to those sounds or how to avoid them. You will need to help your child adapt or avoid painful noises. You may need to offer ear protection or to avoid certain places. You may need to talk to a speech or occupational therapist for ideas. Casey puts his fingers in her ears often. Rob tends to avoid or run from noises that bother him.

Whatever else you do – just remember that your child isn’t faking. It’s hard to handle sometimes, but it’s your job as the adult to help your child adapt or avoid.

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Autism and a Guessing Game

Autism and a Guessing Game

I’ve shared before that, for me, one of the hardest parts of autism is the guessing games. Is his anxiety worse? Is she sick? Why is he saying his anxiety phrase on the way to Hopewell, now? Does she mean she wants to go or is hoping I’ll tell her we aren’t? Is she tired of the same lunches? Is he?

It’s exhausting. Right now, I’m trying to figure out what’s going on with Rob. He has started several really loud quirks. I need to decide if it’s anxiety or just a habit he picked up.

Their day hab moved to a smaller building right after Thanksgiving. Rob tends to be claustrophobic and I’m sure the smaller rooms (but still the same number of people) is stressful for him. The staff has changed several times and I know he spends at least a few days with a staff person he had issues with a few years ago.

He is very loud when I pick him up some days, but is it anxiety or just that he holds himself together all day and needs to release stress with me – knowing I’ll love him no matter what? Does he need a break from there?

Today, he has been chanting his fast food spiel off and on all day – the one that always ends with him yelling coffee cup as loud as he can. I just noticed that every time I hear him start (fish sandwich, McDonald’s, Coca cola) my teeth are clenched until he yells coffee cup. I’m over it.

I’ve tried distracting him. I’ve tried talking to him. Playing with him. Hugs. Deep pressure. He’s happy to do all of that, but he starts again. Really, it hasn’t been constant – but coffee cup can burst ear drums! Is he anxious? He doesn’t seem to be. Is he bored? He has lots to do, but isn’t interested in any of it. We went for a walk and he was happy to be out, but soon after we got home, he started again.

He has a communication app on his iPad and I tried using that to see if he could tell me what he needed, but we ended up talking about animals and the sounds they make (he loves doing that – and is actually quite good… just ask the people who walked by as he gobbled like a turkey at the park! 🙂 )

I tell myself that we all have days or weeks that we don’t feel like ourselves. But how long do I let this go on? He’s doing so awesome in so many things that I don’t want to change much. And maybe it isn’t anxiety, but just that he is ready for summer and weather that isn’t constantly changing. (Every time the barometer starts changing, he feels it – that would put me over the edge.) Maybe he’s just done with winter. Maybe he’s done with masks and “virus” news. I’m sure he senses how everyone around him feels and that can’t be easy, either.

So we are back to square one. Right now, autism is irritating me to no end. I want to help him, but I don’t know how to help if I don’t know what’s going on. And he can’t tell me. I’m sure he doesn’t realize how loud he is – he’s doing it for the sensory input. Now all I have to do is figure out what I can substitute for the feeling of pressure in his throat caused by the yelling! And I don’t know where to start with that.

I’m sure the long black train serenade has just become a habit for him. It’s a way to transition from place to place and I’m okay with that. We got a new car this week and that’s when he started singing on the way to Hopewell, too – but he does it even in the old car. (I am keeping the older one, too – he asked about it for days, but seems to understand now it isn’t going anywhere). The “coffee cup” thing was only first thing in the morning – a transition from bed to his day.

I’m confused. Next weekend is the time change so that will bring a whole new set of issues. Maybe…. with autism, you just never know, right? At least the full moon isn’t the same night! Thank God for small blessings!

He is quiet and happy now. I know it takes a lot of work to get him to use his communication device correctly so I’m planning on trying that again if he starts yelling again. I’m not sure he can accurately tell me if he is anxious or bored or lonely. Those are hard concepts, even for typical people. But, right now, it’s the only option I have.

I have been told to buy ear plugs or turn up the TV. But I don’t want to cover up the sound – I want to help him feel like himself. That’s the hard part and one I know every one of you completely understands. Autism doesn’t bother me – until it hurts my kids and then I just want it to go away. I just can’t imagine being “trapped” in a body that won’t let me say what I need. I’ve heard other parents say they want to be in their child’s mind for a day. Not me – I don’t think I’m strong enough to handle the things they take in stride every day.