autism caregivers – fountains fans fishtanks & fries

You walk into the grocery store and he’s excited. So much to see, touch, smell. You promised him he could pick out a special treat in the check-out lane. It’s all good. He sticks by your cart, keeping one hand on it at all times, like he’s been taught over the years. You feel comfortable and thankful, that finally, he can go on errands with you, eat in restaurants and even experience some parallel play at a playground, around other kids. It’s been a long road to get to this point. So far at the store, you’ve picked up his favorite apples, made it through the dry goods, household items and now you’re headed to frozen foods…

Suddenly, like a clap of thunder from nowhere, he is holding his ears and has a look of strain on his face. You have a cart full of groceries with a half-finished list in your hand, your child is overwhelmed with anxiety, and you have no idea why. History has taught you to just get him out of there. Now. You instinctively say, “What’s wrong?” even though you know he can’t explain what is happening. He starts to shriek, as if in pain. You abandon your cart, put your arm around his shoulder, hold his head close to you, saying, “It’s okay, we’re going. It’s okay. We’re getting out of here.”

You were too slow to recognize the anxiety suddenly emerging, you weren’t fast enough with your escape plan, and before you have time to react your child is screaming at the top of his/her lungs, or hitting you, or hitting himself, or has fallen into the floor in a completely silent shut-down, and you can do nothing to calm him. People are staring, or trying hard not to stare as they go by. Some people are looking at your child in disgust and looking at you with that look of, “Can’t you control your child?” Even the so-called empathetic people tend to say things like, “I know he can’t help it, but why do you try to take him places if it bothers him?”

Well, because it doesn’t always bother him. The last ten times we went to the store we had a great experience. Today was different. Maybe there was a screaming baby on the other side of the store that you and I would just filter out and never notice. Maybe there was a flourescent light overhead that was making a buzzing sound that we would never notice. Perhaps the pulsing of the lights, which is undetectible to you and me, suddenly bothered him today, and it was maddening. He couldn’t make it stop and he couldn’t you words to say, “This is bothering me, can you help me?”

Autism usually creates hypersensitivity in any of the five senses. It may be just one of their five sense, or two, or three or all five. A person with autism may be extra sensitive with one sense such as hearing (auditory), then hypo-sensitive (under sensitive) with another sense such as touch (tactile). Each person is different. It is very common for people with autism to have extreme sensitivity to sounds, visual stimuli, and tactile stimuli. It isn’t their eyes, ears and skin that are hypersensitive per se, it’s their brain that is hyper receptive to these senses or has trouble interpreting the signals coming from the nerves in the body.

I once read an article that explained autism metaphorically. The writer suggested this: Visualize yourself sitting in the Holland Tunnel during rush hour, and trying to focus on and solve a difficult equation. Do that. The lights, sounds, smells, and vibrations would make it impossible to focus on your task, because all you would want to do is block out any or all of that stimuli to your senses. You would be able to focus on nothing else but the chaos going into your brain via your sensory input.

A person with autism may have a similar experience by just walking into a room with a low murmur of conversation, such as a classroom, church or a family gathering. For you or I, our brains would be able to filter out the background noise, and focus on just the one or two people we are conversing with. The brain with autism may not be able to do that. All sounds are going into the brain at once and none of it makes sense. Beyond that, it’s completely overwhelming, if not maddening. The person with autism may appear to ignore you if you speak to him. He may flap his hands, hit his own head, rock back and forth, begin repeating memorized movie dialogue (delayed echolalia) or repeat your words back to you (echolalia), or he may cover his ears to decrease the amount of sounds he is having to deal with in the moment. These are all methods of distraction for his brain referred to as stimming (self-stimulation). He is trying to drown out the overwhelming stimulus. Stimming serves to self-soothe the nervous system when it is riddled with anxiety.

We all practice stimming a times. Do you fidget while on the phone with an angry person or bounce your leg quickly under the table while waiting for a job interview? You may not realize it, but you are balancing your nervous system by giving your brain a distraction and an outlet for an overabundance of anxiety. You are coping.

People with autism are balancing their nervous system all the time – coping – trying to manage the world around them that is full of challenges.

Why don’t I just leave him at home? Because he is human. Because he enjoys outings. Just like you and me, he can learn from experiences and his coping skills can get better. He continually improves himself, but I have to give him the opportunity. He can’t predict when something unforeseen will suddenly jump from the environment around us and irritate his nervous system – his hyper-processing brain. So we keep trying. Many times we have a great day. Other days, we utilize our EXIT PLAN.

Any family who is raising a child with autism has an exit plan. Before they go anywhere, whether it be the store, the circus, the family reunion, the movies, the playground, McDonalds – anywhere – they have an exit plan. It is usually an agreement between caregivers that says, “If something bothers him, I’ll leave with him so you can stay with the others.”

I, as well as my husband, have walked around outside with our son during family gatherings. We’ve sat in the car with the DVD player on for him, and waited, or just driven home then gone back to get the rest of the crew when they were finished with whatever they were doing. The exit plan goes into affect as soon as he exhibits his discomfort by gritting his teeth, pushing at us or burying his face in our shoulder – blocking it all out. Sometimes he tears up, knowing that he can’t control his discomfort and I think he is often confused by it.

We know when he won’t recover. It often only take eye contact between us to know, “ok, exit plan, GO!” One of us leaves with him, to ease his situation, while the other stays back with the other kids, and begins the inevitable explanation to everyone who wants to know, “Is he okay?”, “What’s wrong with him?”, “Would he want to go play with all the kids?”, “I have a sucker in my purse, would that help distract him?” If only it were that simple. It’s difficult to explain it to others in those settings. How do you squeeze an explanation of a complex disorder into a quick explanation at a social event? If you aren’t around autism much, it really is unfathomable when someone says something like, “The chatter in here is too much for him,” or “Everyone trying to speak to him is overwhelming his brain”, “There’s a whiny toddler here somewhere so he can’t focus on anything else.” It barely makes sense to those of us who do live with it. We understand your confusion. Social settings and public places can be like the nails on a chalkboard that drive you and me crazy – but it’s non-stop for a person with autism.

“What can I do to help?”

This is asked much of the time, and it is appreciated. Often there just isn’t much that can be done, however, understanding and encouragement are always helpful. I often – in the tense moment of the meltdown – just want people to step aside, and let us handle the situation. We know what’s best, and we’ve been through it before. I often most appreciate those who go out of there way to direct attention elsewhere, or get people looking at or talking about something else. That’s a huge help. Understand that if a family just suddenly leaves an event, they are not trying to be rude, they are simply, in that moment, putting their child first. In those tense moments, manners and social protocol are not a concern – helping a child in distress matters most. Understand that a child having emotional distress, at the debilitating level it can be with autism, is not that different than a child in physical distress. They need help. Understand if you see a child at the mall with sound-cancelling headphones on, he may already be overstimulated (his brain is already tolerating more than we can imagine), so don’t feel like you have to make conversation with him. Parents of autism are usually a good lead to follow in social situations. Most will help you initiate conversation with their child if they know their child is having a great day and ready to engage with others. Also, most parents of any special needs child has probably learned to be assertive to protect the child. Don’t take it personally if they tell you in a matter-of-fact way, to just give their child some space.

Try to encourage others to not stare at a child having a “meltdown” in the aisle at the grocery, or at the mall, or anywhere. Teach your kids to understand that we are all different and some kids can’t tell someone if they are scared, hurt, sick or nervous. This is scary and frustrating. It doesn’t hurt to remind people that we never know what someone’s situation is, and perhaps they are doing the best they can. You never know, that child who is “acting up” may be disabled and is having a horrible moment – but coping as best he or she can. Understand that children with autism grow up to be adults with autism – and they are still coping – doing the best they can. They still need support, understanding and patience.

Keep in mind that a “tantrum” may be a person doing the best they can in an overwhelming situation. Just because WE cannot find anything overwhelming in the moment, doesn’t mean there aren’t extreme agitators for someone else who’s brain works much differently than ours.

And, if you see a caregiver enacting the EXIT PLAN, just offer a smile of support, or maybe you could kindly hold the door open for our speedy escape. They will appreciate it and see you as a helpful angel during a stressful moment.

Note: This blog references a male child. Readers should understand, both males and females can have Autism.

Tag: autism caregivers

Sudden Onset Meltdown, and the Exit Plan

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