A Different Kind of Meltdown

I should have guessed that having Game Day and an assembly at school instead of the normal routine would throw off Aidan's whole day. He was apparently really good all day, but then at the end of the day ran in the hall and when a teacher stopped him and told him to come back and walk he refused to look at her or talk to her. He was cranky in the car about buckling up. Then when he got home I asked him to feed the dogs before he got snack. With lots of griping (as per usual) he got them food, got Muffin the old dog the WRONG Food even though he knows that she ALWAYS eats the same food as Harley the young dog, and then because of his attitude he picked up when corrected for getting the wrong food, he slammed Harley's bowl on the floor and made all the food fly out. I fussed at him and told him to clean it up. At this point the meltdown began.

Normally Aidan's meltdowns involve him lashing out at the environment around him, especially me or Daddy or whomever else is around. Today it was different. He screamed repeatedly that he wanted to kill himself and starting punching himself HARD in the head. I had to hold his hands and try to calm him down for about 15 minutes before he stopped trying to hurt himself. He cried for a while after that, and screamed he hated me several times, but he seems mostly okay now. Well, except that he's still mad at me and wants to pack up his bags and Harley and live in the middle of nowhere and doesn't care if he starves to death as long as he's away from me.... When did I get a teenager?

Anyways, I'm obviously really concerned about the self-harm during the meltdown today. Every so often he will get frustrated and hit himself, although rarely in meltdown mode. Today was so different and I just didn't know how to react. What should I do? He thankfully has a therapy appointment next week.

Sensory Processing Issues

If you follow us on Facebook, you know that a lot of Aidan's autism “symptoms” relate to his sensory issues. If it's too loud or his clothes feel wrong or the lights are flickering or food tastes funny or feels funny then we might be headed for a meltdown. Sometimes he'll scoot around on the floor with his head down or spin in circles. These are all manifestations of what is sometimes called “sensory processing disorder”. A child doesn't have to be autistic to have sensory processing disorder, but most kids with autism do have some form of sensory processing issues. A lot of the autistic child's “stimming” comes as a result of their difficulties with sensory integration. Repetitive or stereotyped activities (flapping, spinning, lining up toys, headbanging, etc) are often a child's way of fulfilling sensory needs. Meltdowns are a child's reaction to sensory overload in many cases.

Imagine yourself at work in an important meeting. The chair you sit in feels more like the wood plank park bench which pinches your bottom and is uncomfortable to sit on for more than a couple of minutes and the back just doesn't feel right. You have gloves on your hands which make it difficult to receive enough stimulation to be able to type or write correctly. There are bright lights shining and maybe even flickering in your eyes making it hard to see your boss as he tries to talk to you during this meeting. There is loud music coming from outside the room as the janitor cleans, and someone is crackling paper right next to you and a fly is buzzing around your head incessantly. It's super cold in the room so you're shivering. You took a drink of what you thought was water because your mouth was dry and it tasted like lemon juice and now your mouth is puckered because it tasted so bad. What did your boss just ask you to write down?! You have no idea because every sense is being inundated with too much input. Your boss fusses at you for staring at him like he has two heads and you try to explain but are so distracted the words just won't come out because you can't think of what you need to say. He begins to get more angry which only frustrates you more until finally you lash out angrily at him, and since you can't speak coherently it just comes out as violent screaming and babbling. This is a day in the world of a child with autism or sensory processing disorder. It might not always be this severe, some days are worse than others, but every little thing makes it impossible to focus and may even be painful. For Aidan it sometimes means he needs earmuffs or sunglasses or to avoid certain places (Lowe's and Logans for example) all together.

Other children are the opposite – they need sensory input because they are hypo-sensitive. These are the children who bang their head against the wall, flap their hands, make loud noises, spin around in circles, or other “hyperactive” or strange behaviors. They may have meltdowns because they feel like they are floating or some other strange sensation. Deep pressure therapy can help these kids, or a sensory swing.

Aidan has a combination of both hyper-sensitivity and hypo-sensitivity and they can switch back and forth on him with no warning. One day every little sound hurts his ears and distracts him and he has to speak loudly himself just to be able to hear himself over every other sound in his environment. The next day he needs auditory input and everything has to be at the highest volume possible. Usually he can't express to me exactly what sensory input or avoidance he needs. Some days I'm not sure if his behavior is typical little boy acting out or if it's fulfilling a sensory need. I've asked him before about spinning or crawling on the floor with his head down or not acting right at school. Sometimes he tells me that his brain was itching or he needed to get the mad out or some other strange response.

Sensory processing disorder may look very different from one child to the next. One person might have to have all the tags cut out of their clothing and only be able to wear sweatpants and socks with no seams. Another might have poor sensory awareness of his muscles and joints and be extremely “klutzy” or a “spaz”. Yet another might have little to no reaction to pain, cold, hot, or other tactile sensations.

There are different therapies for children with Sensory Processing Disorder, usually falling under the auspice of “Occupational Therapy” and quite often NOT covered by insurance since SPD isn't a recognized syndrome in the DSM-IV (the diagnostic manual used by psychiatrists), and autism is considered by most insurance companies to be an educational rather than a neurological issue. At Aidan's school they have a separate room called a “sensory room” which has dim lights, cool air, soothing music, and lots of sensory input toys such as a ball pit, scarves, beanbags, and a trampoline.

Does your child (autistic or not) have sensory processing issues? SPD Foundation has a checklist available on their site to help you determine if it's possible.

Next time you see a child acting out or strangely, stop and take a look around you. Could it be too loud or bright or could they be feeling hypo-sensitive and need more input? Don't assume that a child is misbehaving out of poor discipline or lack of attention. While this may be the case sometimes, making this assumption can be disastrous and hurtful not only to the child, but also to a struggling parent who is trying to finish an errand while not offending or annoying those around them who simply assume they have a naughty or spoiled child and are a bad parent.

How Weather Affects Behavior

Most parents of kids with autism will tell you that changes in the weather have an impact on their child's behavior. When Aidan has a bad day I look back at whether he was sick, there was a change in his routine, if it was a full moon, and what the weather was doing. God forbid ALL of those happen at once. I have no idea if it's the rain, the change in pressure, some effect on his routine, or what the correlation actually is, I just know it's a fact, and Aidan's teachers and my fellow autism parents will back me up.

Strangely enough, I've found almost no research probing a connection between the weather and autistic behaviors. There is a condition called Seasonal Affective Disorder, but it doesn't matter what season it is for most of the kids I know; it can be summer-time and if there's a big storm system coming through, they are almost guaranteed to have some behavior issues, even if it's just stimming more than usual.

One of the few studies I found through Google explores the connection between rainy climates and autism prevalence. According to the study, “Children in California, Oregon and Washington are more likely to develop autism if they lived in counties with higher levels of annual rainfall when they were 3 or younger, suggesting that something about wet weather may trigger the disorder.” This could be because of the lack of sunshine, the increased exposure to television because of the inability to play outside, longer exposure to cleaning chemicals or other toxic substances, or the pressure changes inherent with weather systems which produce precipitation.

In 1898, Edwin Dexter, a Denver school teacher, became curious about how barometric pressure affected thebehavior of his students (neurotypical we can assume, since it's unlikely that autistic children were permitted in standard classrooms at this time) and studied 606 cases of corporal punishment over a 4 year period. He found that days with abnormal barometric pressure did in fact have a higher rate of behavior issues.

A 1990 article in Nation's Business discussed how the changes in weather affect us biologically. According to the article, which quotes scientists from The National Institute of Mental Health and Johns Hopkins, temperature affects our hypothalamus (the body's thermostat), sunlight alters the balance of hormones, and changes in humidity and barometric pressure affect our blood flow and therefore the amount of oxygen reaching the brain. The article stresses the fact that the amount of oxygen in the blood is majorly affected by the barometric pressure which affects memory, as well as the ability to deal with frustrations and minor annoyances. They note that when animals feel these effects of weather changes they tend to hide out in their den until they feel better, but when we feel these effects social needs demand that we try to continue to function.

Another study looked at in a 2004 issue of “Crime Times” (silly name I know!) found a connection between psychiatric symptoms and barometric pressure. The researchers documented both violent crimes, suicides, emergency psychiatric visits, and psychiatric admissions in Louisville in 1999, and weather conditions such as humidity, wind speed, and barometric pressure. They found a link between acts of violence and emergency psychiatric visits with the barometric pressure (none between suicide or inpatient admissions). Schory and his team noted that barometric pressure was associated with changes in cerebral blood flow, premature labor, and changes in certain endorphins related to depression. Their ultimate finding was that “"barometric pressure may alter the propensity toward impulsive behavior through changes in brain monoamines or cerebral blood flow."

Although the majority of these studies did not directly connect autistic behaviors and weather changes, they do all show that mood and behavior are affected by barometric pressure. If even neurotypical people have a difficult time pinpointing what is making them feel upset or easily frustrated, and children have a harder time with it than adults, how much MORE difficult is it for our children on the spectrum?! In addition, since we don't know exactly what makes our children autistic to begin with, and scientists are still exploring the biological and physiological differences that cause or are caused by autism, we have no idea to what extent changes in weather really affect our children and their behavior.

Communication issues prevent our children from telling us what is hurting them or how they feel, making it that much more frustrating for them when they feel poorly due to the weather. What if it gives them a headache, or drops their serotonin levels so they can't focus or are easily upset? Aidan couldn't even tell me his teeth hurt when he was cutting molars and having meltdowns daily. And he is VERY high-functioning and pretty verbal.

I have to ask myself if I'm just creating a self-fulfilling prophecy when I expect negative behaviors on days when the weather changes, or if I'm just being proactive and preparing myself to deal with the inevitable behavior problems that stem from changes in the weather. Considering that it's been raining for 2 days now and is supposed to snow tonight and tomorrow, I don't look forward to the behavior problems that are likely to come from the weather.

What links have you noticed between the weather and your child's behavior? Have you come across any studies linking the two?

Summer Vacation Trip

We went to Rockford this past week and Aidan had a blast! He got to:

• Ride a trolley
• Blow the trolley whistle and ring its bell
• Climb on and around trains at the Illinois Railway Museum
• Visit his Great Grandparents
• Drive Great Grandma's scooter
• Ride an airplane
• FLY an airplane
• Ride on a boat
• Jump off a boat and swim in the middle of the lake
• Drive a boat
• Ride a four wheeler
• Ride in a canoe
• Paddle a canoe
• Light fireworks
• Roast marshmallows

Wow! What a week! It was a wonderful visit with Poppa, Grandma Holly, Auntie Arian, Auntie Mimi, Uncle Chris, and his many cousins (Autumn, Cody, Dani & Addy). He was super great for the 11 hour ride up and the 11 hour ride back, plus all the in between trips here and there.

We did have a couple of close calls as far as his autism. At the train museum he got super hungry and overstimulated and tired, and almost had a meltdown before we were able to get him food. Also, he had ice cream twice in one day and the dairy affected his behavior quite a bit – have to plan better next time! The only other really close call was the last day, visiting Great Grandma and Great Grandpa at their apartment. Aidan was at the end of his rope, tired and overstimulated and homesick. He started pushing and pulling and spinning Poppa's chair and after many times of being asked to stop, I asked him to come with me to the hall so we could talk. Aidan ran away and went in Great Grandpa's office where he proceeded to have a mini-meltdown (aggressive, stiff, arching his back, growling, nonverbal). We got him calmed down, gave hugs and left. Otherwise, it was an all in all awesome trip! Hopefully we can do it again soon. I know Aidan had a blast!

Meltdowns 101

A lot of people outside the autism community seem to be confused or misinformed or uninformed about meltdowns in autistic children (and adults for that matter). I know that when Aidan has a meltdown, I make myself stop and say “Okay, is this a meltdown or just a tantrum?” It's usually pretty easy to tell the difference. Sometimes a meltdown will start as a tantrum but devolve into a meltdown, usually because Aidan's communication skills aren't enough and he gets frustrated, or because whatever caused the tantrum was just a trigger for a meltdown (like the straw that broke the camel's back – more about this later). A meltdown can happen for any number of reasons, and it's often difficult to tell what that reason is – I try to go back after an unexpected meltdown (it's not possible to do so DURING) and figure out what triggered it. If and when possible I'll try to defuse the situation before the meltdown happens, but this isn't always possible. Just like the bombs on television always have digital clocks on them, all autistic kids have bright, easy to see, obvious warning signs, right? Wrong. Sometimes I can see it coming, but unfortunately it's usually too late by the time I do.

What does a meltdown look like?

For Aidan, a meltdown may start with a very aggravated look on his face, widened eyes, clenched teeth, and balled up fists. He'll often growl at me or grunt, and usually at this point is beyond speaking to me, especially not to tell me what's wrong. This then progresses beyond aggression into violence – at this point if I look at his eyes, it's almost like Aidan's not in there at all, he's been taken over by this crazy little rabid animal for the time being. He begins screaming at me and then attacks me. I can try to walk away or place him in his room to do his thing by himself, but inevitably Aidan will pursue me. He will punch me, scratch or claw me, kick me, throw whatever is available at me, headbutt me, and attempt to bite me. His whole body is completely tensed up, his back frequently arched. He's chipped my teeth, broken Jeremy's glasses, damaged his own toys, thrown furniture, and always leaves claw marks and bruises all over me. It can last anywhere from 5 minutes up to an hour (we've never seen one longer than that, thank goodness, although he has had multiple meltdowns in one day). A meltdown doesn't stop as suddenly as it starts. Eventually Aidan slowly calms down, stops hitting me or trying to hurt me, moves from screaming and growling into crying and sobbing, and his body relaxes. He'll hide his eyes at this point, a lot of times he'll cover his ears, and sometimes he'll let me rub his back but usually he doesn't want anyone to touch him. If I try to talk to him about it, it's going to either make him cry harder or ramp the meltdown back up. He's usually very very tired after a meltdown and doesn't talk much at all.

What causes a meltdown?

Often a meltdown seems like a mystery. There are any number of triggers for a meltdown, and what may seem to be the cause of a meltdown this time, might not so much as phase Aidan next time. Or something that never bothered Aidan before suddenly sets him off unexpectedly. This is a pretty good sign that what set him off was a trigger but not the cause. Think of it like the old metaphor of the straw that broke the camel's back; a combination of sensory overload, physical discomfort, frustrations, disappointments, or surprises comes together to confuse Aidan's brain and he doesn't have the vocabulary or self-control to handle it calmly or at least ask for help to fix the situation. Sensory overload for Aidan is usually sound related, although it can be lights or any number of other sensory input – think of it kind of like how a strobe light can cause a seizure. Physical discomfort we've discovered after the fact has been from toothaches, tummy aches, sore throats, and even from being given milk at school (his tummy is very sensitive to milk products). Frustrations could be caused by a game not working for him or a friend not doing what he wanted or expected. Also, Aidan has a very strong sense of “justice” which isn't always logical, but if you punish him for something that he feels was not wrong or that he wasn't told there was a rule against, he will go into a tail spin.

Can't this just be “disciplined” out of him?

If Aidan is just throwing a tantrum, or if he's winding up toward a meltdown but still has some control over his behavior, then yes, discipline or even distractions can help the situation. But if Aidan loses control over and unmet need or discomfort, and I punish him instead of figuring out what his problem is, then I'm only going to make Aidan even more out of control. Basically I'm punishing him for trying to communicate that something is wrong in the only way he knows how at the moment. Some days his verbal skills are worse than others. Especially if Aidan is fighting off being sick, his ability to tell me something wrong can be diminished by various factors, and if I try to punish him into acting the way I want him to, I'm just going to make things worse.

So what do I do now that I know?

For a long time I had no idea whether Aidan was having a tantrum or a meltdown. I would try to punish him and only make things worse. Without the experience I have now with Aidan, I wouldn't know what to do in the event of a meltdown. Now, if I judge that Aidan isn't throwing a tantrum but has completely left the building when it comes to his ability to control his behaviors, then my only option is to make sure he's in a safe place (out of reach of things that can get broken or could hurt him), and try to restrain him enough to keep him from hurting himself or me. It's exhausting for everyone involved, and god forbid it happens in public. I think the hardest thing to explain to people without experience in the world of autism, is that aggression and meltdowns and the behaviors associated with them, are not signs of a spoiled or bratty child, or of bad parenting – they are simply symptoms of a disorder.

I invite your questions, comments, and suggestions (so long as they are constructive and in the spirit of learning and cooperation).