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?

Holiday Weekend

Aidan's holiday weekend was great! They let out school early on Tuesday due to the threat of severe weather (which never happened), and for the most part it didn't screw with him too badly. He was a little hyper and messed with the dogs a lot that afternoon but no meltdowns or anything like that. 

Krista (my little sister/adopted daughter - long story) and her husband, Ross, came into town Thursday morning and met us over at MawMaw & PawPaw's house for the holiday dinner. Uncle Matt was already there. Aidan's tummy was hurting (some constipation issues, which I hope will go away quickly since we've dealt with impacted bowels once before with him several years ago) so he didn't eat hardly any dinner. We all played games that evening and Ross let Aidan play with him, which Aidan REALLY enjoyed.

On Friday Krista & Ross came over in the afternoon and they hung out with Aidan, playing Battleship with him (Aidan won!) and legos in his room until about 5. Aidan loooooves his Krista - and she loves him back. Thankfully her new husband is great with Aidan as well. That night, Aidan got to spend the night at MawMaw & PawPaw's house which meant he got to spend LOTS of time with Uncle Matt (my little brother). They have a "mutual admiration society". Those two love each other more than anyone else I think. They spent the evening playing legos and video games, and the same the next morning.

Saturday afternoon Aidan got to go outside and play with his best friend Jonas. They apparently spent a good portion of the time "storm chasing" and even caught their first storm. I'm so excited to see Aidan's imagination growing and developing. It also makes me so happy that he has a friend who doesn't bully him and helps his imagination further develop.

Today Aidan has spent most of his day playing video games and watching TV. It's rainy, there's a cold front moving through, which usually affects his behavior pretty badly, so I'm letting him lay low and just relax. He's been quiet and not into any trouble for the most part today so we're thankful for that.

I really worry about the upcoming week since this past one was out of routine with getting out early on Tuesday and being out the rest of the weekend, plus the weather is changing big time. It was in the 60s or lower 70s yesterday and we're supposed to have snow Monday night/Tuesday morning. That's going to be an adventure...

Uh oh - you're too smart!

A new study was released stating that the rise in autism might be linked to "clever parents" and that "couples who are both strong systemisers, for example, those who studied and works in STEM subjects (science, technology, engineerings and maths) and other fields related to systemising, are more likely to have a child with an autism spectrum diagnosis than couples where only one is a strong systemiser, or where neither is". 

Right.

So I'm skeptical about this of course. But, assuming there's a grain of truth in it, I'd like to see the autism prevalence numbers here in Huntsville.  We have the highest number of PhD's per capita, and the second highest number of engineers in the world last I checked. That's a lot of "strong systemisers" in one area, and I know that a large portion of couples here in this area are dual engineer marriages.  If current national autism rates are hovering around 1 in 100, then what is the rate here?  I wonder what we'd have to do to find out? I know MANY dual "STEM" couples who do not have kids on the spectrum. I'd have to find out how many of my friends who DO have autistic children have one or both parents in an engineering or related field. Your input would be awesome!

You Might Be an Autism Parent If...

So for the last 24 hours on Twitter, the hashtag #youmightbeanautismparentif has been flooded with tweets from autism parents worldwide commiserating and joining in fellowship and camaraderie over what it means to be the parent of a child with autism. Here are some of my favorites:


You might be an Autism Parent If:

• You detest the phrase 'this too will pass', because it WILL take forever to pass..and it WILL be back, again.
• It's never easy to choose between telling your kid something ahead of time, & not warning them.
• Your 8 yr old has mastered every level of  Lego Star Wars but can't put on his own shirt w/out help.
• You're not sure who needs the padded helmet w/ faceguard more...your kid, or you.
• You know its a bad day when you find all the trains lined up
• You have more people that understand you in other states and countries than in your own neighborhood.
• You have to communicate in sequences....i.e. first brush teeth, then bedtime.
• You get so excited when your child masters a skill that he/she is a year or more delayed in!
• You know *just* how much silence is too much silence. And then you run to check on them.
• You use the phrase "use your words" repeatedly throughout the day
• Your son is 8 years old but still pees on his pants at least once a week.
• Your child makes up un-funny jokes in an attempt to understand humor, irony, and metaphor - unsuccessfully.
• The school staff hates to see you coming! Because they know you're not taking any crap when it comes to your kids!
• You make up songs for almost anything because your kid responds better to it.
• You have a heart attack when you see the school phone number on the caller i.d. Shit! What did he do now?
• You've ever carried a screaming, flailing child out of a store & you knew it was for the best.
• There are days you feel and look like a battered wife because your child had a major meltdown
• You're accused of being overly protective of your child, and overly sensitive to popular culture!
• Your kid has the hardest time telling you the simplest of things, but can turn Legos into amazing things with no plans
• Your child tells a joke over and over until somebody laughs
• Every activity you do comes with a series of warnings approaching the end of the activity.
• You can't vacuum without a 15 minute warning announcement
• You're sometimes amazed at the sounds and faces your child can make in a day!
• You have had someone say "maybe if you were more consistent...." and you want to gut punch them
• It doesn't matter how cold it is, your child WILL NOT go to sleep without the fan on in his room.
• Anything "_____tard" is likely to not only offend, but infuriate you!
• You start to realize the apple doesn't fall far from the...hey is that a squirrel?
• You really relate to ' Gerald Mc Boing Boing'
• Your twitter friends understand you and your child better than your local friends
• You know exactly what a pooptastrophe is and are happy beyond words when your child outgrows this behavior.
• Everytime ANYONE comes to your house your child tries to hijack them to come play legos with him. 
• You have to think through EVERYTHING you need to say first so that your child doesn't take something literally.
• You sigh when other people tell you how their parents handled that when THEY were kids. 
• You've given a complete stranger a tongue lashing for suggesting your kid has a discipline problem
• You're used to strangers looking to you for translation because they couldn't understand a word your kid said
• You sometimes have to remind yourself there are a lot worse things that could happen to your child than autism.
• You avoid public bathrooms because they are too loud and cause sensory overload.
• People always question your child's behaviour and the way you raise your child.
• You see no problem with your child scooting around on the floor with his head down for hours making weird sounds
• You've apologized to restaurant staff because your child said the place smelled bad and you had to leave.
• There are lines and lines and LINES of small toys all over the place
• You know your child was given dairy milk at school because he's acting crazier than normal.
• Your child refers to a friend as "The Third Boy" rather than by name even after a year.
• You forget how delayed your child's speech is until you hear a 4 yr old talk better than your 8 yr old
• You still get nervous before an IEP no matter how many times you've had one.
• You dont even blink an eye when seeing a child twirling and flapping in public
• You have to buy your child's favorite food in bulk quantities because anything else you buy will go uneaten.
• You have the child locks on your car doors because your child has tried to jump out driving down the road.
• Your 7 year old has designed 40 different versions of the Dominator from Storm Chasers 
• It makes you sick when other normal kids your child's age make comments or stare during an inclusive sport
• You feel like a stuck record when asking a kid to do a simple as "put your jacket on"
• You think a meltdown is something that happens to a child, not a nuclear reactor.
• You get pissed at parents of neurotypical kids because they call you selfish for NEEDING A BREAK
• Your child lectures you on the dangers of speeding as you drive them to kindergarten
• You can tell the difference between a meltdown and a temper tantrum even when nobody else can
• You have to explain EVERY step in the process. i.e. 1.raise hand 2.WAIT to be called on 3.answer.
• Your child has 3 time frames - Today, Tomorrow, and Later.
• You're afraid to put your child in sports because it could cause a sensory meltdown in public
• You've ever cleaned poop off the walls of your apartment at 5am.
• You plead with your child to be allowed to throw away the packaging
• You've ever cried because a teacher "gets it"
• You remarry and are super grateful that your spouse chose you and loves your child like his own.
• You've ever wanted to strangle a neighbor kid for bullying your child but were too busy crying instead.
• You've ever put special locks on your doors to keep your child from eloping.
• The words, "he doesn't look like he has Autism" make you roll your eyes.
• You don't even react to all the strange screeches, grunts, snorts, etc coming from your child.
• You've got Meltdown Early Warning Radar
• You want to cry when someone says, "He must be mild..."
• You use the Nintendo or ipod as a muffling device when you know you're going somewhere overstimulating
• You consider friends you've only talked to on-line as some of your most trusted confidants
• You know the name of every Thomas engine.
• You've wanted to strangle a parent of a neurotypical child who says your child just needs some discipline.
• Some days you don't have much to say to "normal" parents.
• There are three sets of rules on your fridge, including one your child made for the dog. (Rules are important!!)
• You celebrate with a friend when her child eats two bites of pancakes!
• You brace yourself for a tantrum when you inform your kid there's an errand you forgot, and wasn't on the list
• You've left a full cart in the store and left because of a meltdown.
• You consider twitter peeps you've never met, who have autistic children, some of your best friends.
• Your child has beaten Lego Star Wars 3 times in the last year and he's only 7.
• You watch a movie via your child mimicking it back at you instead of watching it on TV.
• You get excited when your child eats something more than chicken nuggets and pizza.
• You still bear scars from your child's last 3 meltdowns.
• You carry earmuffs and sunglasses in your purse for your child at all times.
• You get excited when your child swears because at least they said something.

I would try to credit everyone who tweeted these, but I couldn't even begin to try. So I'll just thank all the autism parents on twitter in general.  You guys are awesome and I couldn't do it without your support and humor!