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This is Autism, in plain English

By on July 20, 2011 in Autism

Allow me to explain, in plain English, what autism is. If you have any interest in learning about autism at all, please give this a read. I’ll even keep it short (well, compared to a textbook anyway).

Technically Speaking

To start at the top, there is PDD (Pervasive Development Disorder) which is a group of disorders including Rett’s, Childhood Disintegrative Disorder and ASD (Autism Spectrum Disorder).

Within the Autism Spectrum Disorder, there is actually another group of disorders including:

  • Autistic Disorder (also called “classic” autism)
  • Asperger’s Syndrome
  • PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified or “atypical” autism)

So being “on the spectrum” and “having autism” may not mean exactly the same thing although some people, even professionals, may use them interchangeably.

I should also mention, Fragile-X is a genetic syndrome that is not autism but may cause autism.

Something I need for you to know

First and foremost, you need to understand that every single person that is on the autism spectrum is different. That means that every single symptom and situation is different.

From here on out, everything I tell you may affect a lot of autistics but not all.

Common Symptoms

  • Communication Impairment
    This can be broken down into a few areas, such as:
    – Literal Thinking. This happens when a person is unable to, or has great difficulty, in understanding such things as irony, sarcasm, metaphors, expressions, etc. To use a phrase such as “I laughed my head off” would be interpreted by an autistic literally, they picture that your head actually came off.
    –  Inability to Understand Non-Verbal Queues. Many autistics explain that they are unable to tell what others are thinking by reading facial expressions or body language. Recognizing a person’s emotions is very difficult unless stated specifically and literally.
    – Anxiety. Extreme fear of social situations often makes socializing near impossible. Autistics often prefer to avoid social gatherings despite having a strong desire to be a part of them. Autistics often feel like foreigners, speaking another language, in a place where they do not belong.
  • Sensory Processing Disorder
    Despite being a separate disorder, SPD (Sensory Processing Disorder) is quite common among those with autism. This is broken down as such:
    – Hypersensitive.  Autistics often have an aversion to loud noises, lots of noises, bright lights, flickering lights, scratchy clothing (such as wool, seams), strong tastes, food textures and more. Anything that can overload the senses. Sometimes a simple hug can feel very painful all over.
    – Hyposensitive. Often times, people with autism have a high tolerance for pain, sometimes not even realizing that they’ve been hurt.  The same is sometimes true of all of the five senses. While a person may hate being touched at times, sometimes they have an overwhelming need to be touched. Often weighted vests, blankets, etc can help.
    – Filter. While not a sensitivity, often the brain lacks the filter that most people have to remove background sounds, smells, sights, etc.  For example, when you go into a restaurant, the music, kitchen sounds and other people talking all fade to the background so that you can hear the people you are talking to. With an autistic person, this is sometimes impossible… they hear it all at the same time, at the same level and become overwhelmed.
  • Routine / Repetition / Patterns
    An early warning sign is a child’s need to follow a strict routine, make repetitive sounds or actions to excess or to create patterns out of objects rather than play with them.
    – Routine. All children need routine but children with autism especially need it. A break in routine can leave a child feeling completely lost, out of control and overwhelmed with anxiety. The severity of this varies greatly.
    – Repetition. Children with autism often repeat words, sounds or actions over and over again for much longer than what you would call a phase. These are usually single words, small sounds or small actions… repeated over and over again.
    – Patterns. Often children will line up cars in a straight line, put their cereal into grids or lines, single out single elements from a more complex pattern or anything else along similar lines. Rather than actually playing with objects, they’ll find more joy in aligning them somehow.
  • Stimming (Self Stimulating)
    Stimming can be defined as a person’s need to produce an output, a way to fill one, more than one or all of a person’s senses (input).
    – What is it? Stimming comes in many forms but some notable occurrences include arm or hand flapping, moaning, head shaking, spinning, hitting oneself, moving one’s hands in front of their own eyes and so on.
    – Why do it? Stimming is done either to satisfy a need for input, such as a craving for deep pressure or to hear something, or as a way to block out other input, such as moaning so they no longer hear all of the other noises in a room (fan, television, people, etc) or to feel deep pressure so that they no longer feel the scratchy fabric of their clothing. These are just examples of an infinite number of possibilities.
    – Stop it? Some people wish to stop their child from stimming which, depending on the circumstances, can be beneficial or harmful. If stimming is done for self satisfaction and interferes with their ability to perform needed tasks, stopping it may prove beneficial. However, if the person is stimming to block out other overwhelming stimuli, preventing them from doing so may lead to a meltdown.
  • Meltdown
    So what is a meltdown exactly? Is it just a temper tantrum? Can a child be disciplined out of it?
    – Temper Tantrum. A means to get ones way, or to express extreme dissatisfaction with being unable to get ones way.
    – Meltdown. A complete loss of control over one’s faculties due to overwhelming anxiety, fear, pain, sensory overload or other outside pressures. A meltdown is very much akin to a reaction one may have to being tortured.

Epilepsy/Seizures

Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body.

Sometimes seizures are noticeable but most of the time, they happen so subtly that it can not be detected by simple observation.

Wandering/Elopement

In 2008, Danish researchers found that the mortality rate among the autism population is twice as high as the general population. Often times, a parent reports looking away for only a brief moment to find that their child has wandered off. Often times, they are found in neighbor’s pools, nearby woods, on highways and more.

People with autism seldom recognize the fear or danger in wandering off from the comfort of their surroundings.

Severe vs Savant

As a spectrum, autism can range from one extreme to another where one person may not be able to speak, use a toilet or dress themselves to another person that can remember Pi to over 25,000 places.

In the past, a person was considered “severely autistic” if non-verbal but today we now know that a person can actually have a normal or even high IQ despite verbal or other impairments. This means that just because a person can not speak, use a toilet or dress themselves, that there isn’t a very smart individual in there wishing to express themselves.

Also, not all savants are autistic even though “autistic savant” is when we hear the term most.

While autism can be a life long, debilitating disability for some, and while it may provide savant, superhuman like gifts to others, the fact is that for the most part, autism is a disorder which leaves people somewhere in the middle. Unable to handle a regular classroom, social setting, conversation and more but able to live independently with proper treatment and therapy.

Why an autistic person might not look me in the eye

One common recognizable sign or symptom of autism is the person’s inability or desire to look at a person’s face, or look them in the eye. Several well known autistics have described the process as “taking thousands of pictures of a person’s face every time I look at them”.

This is understandably very overwhelming and so, to avoid being overloaded into a meltdown, sometimes they will refuse to look you in the eye.

Other times, it can be described as simply a social awkwardness where they feel too much anxiety or discomfort with doing so.

Also, as with everything, this is not true of all people with autism. You’ll find that a good number of autistics really have no problem looking at you.

Causes

Other than Fragile-X causing some cases of autism, no one knows the cause for the rest. Genetics and other environmental factors (which includes vaccines) are often discussed in the media but no matter what you’ve read, no one knows the cause with 100% certainty.

Treatments / Therapies / Diets

There are countless treatments available although ABA (Applied Behavior Analysis) is the most widely used and approved method.
The most common therapies that help children are speech therapy and occupational therapy.
Diets proven to have the most positive effects include the GF (gluten or wheat protein free) and CF (casein milk protein free) diets.

No one treatment, therapy or diet will work for all people with autism although most have met with some success with at least some people. Because of this uncertainty, there have been some people who take advantage of the situation and create “snake oil” remedies which cost a lot of money yet don’t really work.

The truth is, though, that because no one knows the cause, no one knows the cure. As of right now, autism is a life long disorder with no cure.

Everyone agrees that the best chance an autistic person has at an independent life is via early intervention, which means receiving a diagnosis between the ages of 2 to 3 followed by receiving therapy, treatment and other help as soon as possible while still in the early development stage of their life.

How can you help?

  • Be understanding. Reading this is a great first step. The simple fact that you have taken a moment to know some of the characteristics and symptoms means a lot to a person with autism or their parent. Now that you know what stimming is and why it probably should not be stopped sometimes goes a long way toward understanding the person that is doing the stimming.
  • Do not judge. When you see a parent with a child that is screaming on the floor at a restaurant or grocery store, don’t be so quick to think that they’re a bad parent or a bad child. Perhaps that child is autistic and having a meltdown due to outside stimuli which feels like a constant stream of pain… such as torture. If you felt what that child has just been feeling, you may react in the same way. Autism can NOT be disciplined out of a person. It is hardwired in their brains.
  • Be accepting. If you know a child with autism, accept them for being different and needing to stim or be alone sometimes. If you’re at a party and you see someone on their own, be kind but respectful if they request to be left out of the group. If you employ someone with autism, give them a little extra room to cope with the crazy atmosphere around them and don’t be too hard on them if they avoid the X-Mas party. There are many ways you can adjust your own expectations to be accepting of their differences without having to necessarily give them special treatment.

So Remember

All people with autism are different. No one symptom is common among 100% of people with autism. No one therapy, treatment or diet works. Not all autistics are brilliant, not all autistics are non-verbal and not all autistics are dependent nor independent.

Chances are, you know someone on the spectrum and not even realize it. They may not even realize it either.

Please print this or copy it and share it with anyone wishing or willing to know more about autism.

Thank you.

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Turning obsession into good behavior

By on January 8, 2011 in Autism

My boys each got handheld video games for Christmas, Cameron got the Nintendo DS and Tyler got a leapfrog. We knew that they’d like them but, as is the case with many children, they’ve become the subject of complete obsession. The first question in the morning is if they can play their games and it continues on until it’s the last question of the day.

If they had their way they’d be staring at those games through out the entire day.

Behavior ChartMy wife had the idea to get a large green piece of paper and make a chart for each of them. She filled the chart with all sorts of things from chores to bad behaviors and at the end of the day, we check to see what they did and didn’t do… for all the good things, they get a sticker, for the bad, they get an X.

An example of some of the chores would be putting dishes into the sink, tidying up their toys, making their beds… and some examples of the bad behaviors that made it onto the board are “no yelling”, “no hitting” and so forth. If at the end of the day, they didn’t fight, they get stickers. There are some good behaviors listed as well, of course, such as “playing nicely together” and “sharing”.

At the end of each day, we all gather at the chart and see what they did well and what they didn’t do or worse, got X’s on. The first day, Tyler cried when we asked him to turn off his game. Turning off their games without complaining is on the list. Well, for his outburst, he got an X.

Each day, when they ask to do something they like, such as playing their games, we review the chart for the day before. If they did well, then yes… they get some video game time. If they got X’s or missed a bunch of things, then they lose out on game time. That means they had better improve if they want to have game time the next day.

It’s an excellent lesson in cause and effect. I’m not sure this system will stay exactly as is but there’s no reason that this can’t continue on for many years… eventually moving on to dictating how much allowance they get when they’re older.

Hopefully, in time, it’ll sink in with them that their entire lives can be met with nice rewards if only they put in the effort in advance.

It’s definitely not a new system, I’m preaching to the choir by telling you all of this. I’m not trying to give you any new ideas, just let you know what we’re doing around the Duncan household these days. So far it’s been a huge success.

Oh, by the way, one thing I did want to mention though is that Cameron is 5.5 years old and Tyler is 3. Cameron has Autism, Tyler does not. This system can be started at any age really but I find that their ages right now are ideal.

It has especially been great for Cameron who so very desperately needs a good routine in his life. Not only does this give him a list of things to do each and every day but it encourages him to over come some of those basic Autism tendencies, such as hitting and meltdowns. When he begins to lose control, we remind him that he’ll get an X and lose out on game time tomorrow and it helps him to calm it back down.

The best part about it all, I think, is how proud they are each day of all the stickers they got for doing so well.

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Educating The Educators

By on May 26, 2010 in Autism

The title sounds a bit harsh, I don’t mean to undermine the experts, doctors or teachers… but I do want to emphasize one thing rather clearly, you know your child better than they do. They know generalities, sciences and the history more than you do but they don’t know your child. This means that in some cases, you do know better and in some cases, you need to explain some things.

I would like to give an example and I hope I don’t offend anyone, they did nothing wrong, it’s just that this was a situation where we, as the parents, had to step in and explain how our child was unique.

We are very fortunate to have found an extremely wonderful school for our son, where the entire bottom floor is dedicated to Autistic children. This means that different rules apply there, such as peanuts… they’re allowed on that floor, since many children have special diets and in some cases, some nuts are actually therapeutic.  We sold our house at a moment’s notice, moved over 8 hours away and had some rough times but we were determined to make sure that our son was in this school and it turned out to be a great decision.

At the age of 4, Cameron had his first full year in school where he had one teacher, 4 teacher’s aids and all the other children were also Autistic. The number of students varied through out the year but generally it was around 7 or 8. So imagine, 4 aids to 8 children plus a teacher as well. This was perfect for our son.

Prior to his schooling, we had worked very hard with Cameron to develop his speaking and education at home… when he visited his first class room, he could already count to 40 and recite his alphabet just fine. Not astounding but for an Autistic child who hadn’t said his first word by 2.5 years old, we were happy with his progress.

The problem came when his teacher and instructors were also impressed with his progress… in fact, too impressed.

For the first few months, a gradual change grew in Cameron as he’d become more and more disobedient, more prone to screaming, more violent… it just got worse and worse and we feared that he wasn’t settling into school, he was becoming less content with it.

We had been trying to talk to Cameron about what was bothering him, what was wrong but getting any child to volunteer information is rough, especially an Autistic child. Basically what it amounted to was us guessing at every possible situation and scenario we could possibly imagine until we hit it… and after several months, we did. His trigger word was “safe”.

What it boiled down to was his sense of feeling safe… once we hit the trigger word, he opened up and told us that “they don’t keep me safe” which meant, they didn’t make him feel safe.

My wife and I visited briefly one morning with his teacher who was completely understanding about it but it wasn’t until I had, in just a few minutes time, a chance to observe what was happening.

As we stood there, Cameron took one of those wooden animal puzzle boards and began placing the pieces as another little boy walked over, dumped it all out, walked to another child, knocked over their blocks, walked to another child…. and basically just disrupted everything.

No one had noticed this except for me, and no one would have ever known because Cameron just picked it back up and started over.

But what was happening was that he felt violated, unsafe… and would come home where the emotions would boil to the surface.

We discovered that, because Cameron seemingly took everything in stride and never complained about these things, the teachers and aids would either not notice, or remove the disruptive child from the situation… leaving Cameron there to be by himself, feeling quite alone, quite unsafe.

We never would have ever known without having been there for those few minutes to talk to his teacher but it all became quite clear.

After talking to them about it, they admitted that he seemed “too high functioning” to be thought of as having any problems like that. That he was so well behaved that they never imagined that he was having those feelings. And how could they? He didn’t demonstrate any problems until he got home.

Following that moment, we saw another huge change in Cameron… he settled back down, he became the happy and content child we had known previously. He felt safe again.  His teachers began to pay him more attention in those situations, to remove him from the scene (from the danger) and to make sure to always keep telling him how they’ll keep him safe.

We’ve had no problem since and the year is almost over.

Again, we’re very lucky to have found such a wonderful school for him, and we’re lucky to have such great people with him that will take our input, to not be offended that we step in like that, that do their very best in what must be an extremely difficult situation.

Personally, I couldn’t imagine what it must take to be facing many Autistic children every day, of varying levels of severity and to not only manage, to not only take care of them all but to teach them daily. It’s a huge task and one I am sure I could never do.

But despite all that, they still need the parent’s help sometimes.  They know it, I know it. It’s important that every parent knows it. Handing off your child and thinking that you finally get a break is not an option if you want what’s best for your child.

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The Lessons We Learn the Hard Way

By on May 20, 2010 in Autism

Parenting is one of those things where you can’t help but share your experiences and insights with other parents, especially if they’re new parents. It’s one of those things where, even when you know you shouldn’t, you still speak up when you see them doing something you don’t agree with. It’s one of those things where, when you take care of their child, you ‘sneak’ in some of your own brand of parenting because you think they’ll be better for it. It’s… well, it’s really quite invasive, isn’t it??

We all do it and we all mean well, it’s always done with the kindest heart, even when you just want to scream at them to just shut up… please just shut up! But you don’t, because you know they’re not wrong, and they’re just trying to help… it’s just that, they don’t know your child as well as you do and their methods, although they may not be wrong, may be a bit dated.

Let’s take grandparents as an example because I think we can all agree that they can be some of the worst in this department. They raised you and you turned out just fine, right?  And they are a great source of wisdom, so it’s only natural they’d have the most to ‘share’ with you.

But sometimes, it can be a bit much for the young parents who just want to do things for themselves, right or wrong… they need to be their own kind of parent, not someone else’s.

Now, this brings me to Autism… let’s face it, even if they had an Autistic child, they didn’t have yours… and they’re all different. But chances are, they didn’t. And they haven’t done all the research you have nor spent the same amount of time with your child as you have and therefore, they keep giving their same old advice and it really doesn’t even come close to applying to your situation now. But they still mean well and you still listen with a smile knowing full well that you can’t do what they did.

What I am trying to say is that it’s up to you to educate, even the most stubborn “I did it and I know what I’m talking about” kind of advice giver… you can’t just smile and nod because they don’t know. They don’t understand. They haven’t been in your shoes.

I’d like to share with you one example where we didn’t educate enough, we didn’t make ourselves clear enough or… we simply never would have been able to but after the deed was done, the lesson was definitely learned.

We took my wife’s mother with us to a pasta restaurant where we knew full well that our choices would be extremely limited since Cameron (my son) is on a strict gluten free diet. We got him some pasta but never intended for him to eat much of it. Just a little… and we’d pad that with other food, even deserts if we had to.

Well, being a good grandmother, she disagreed with filling a child with deserts or ‘other food’… she knew full well that he was on the diet, and knew fell well that we’d object. However, she didn’t know just what the gluten did to him. She didn’t understand the full extent of his condition. As I said, we tried to explain but really, who believes that a little pasta will set off a child like a grown man on heroine?

So, as my wife and I went off in search of food for him (at a buffet), Cameron’s grandmother took it upon herself to feed him some more of his supper before we got back. As I said earlier, she wasn’t really wrong in doing it… it’s what I would expect a grandmother to do. However, as I also said, in the case of Autism… we failed in educating her properly.

We got back to our table and protested what she did, she argued that he’d be fine… damage was done, what can we do.

So we returned home afterwards where the monster quickly revealed itself… and when I say monster, I mean it. He was screaming, going wild, jumping off of furniture… to say he was bouncing off the walls is quite a literal expression. He actually got a big bruise under his chin from hitting a wall… under his chin!!

He finally went to sleep some time after midnight (his bed time is 7pm) and woke up very sluggish, very slow and proceeded to spend the entire day on the couch, in a ball, rocking back and forth apologizing to us, telling us he loves it, saying sorry…  just, so secluded, so alone.

I swear to you, it was like watching a drug addict go from a major high to a very extreme low and it all happened so very fast. Even other family members that were around that day or the day after commented on how bizarre he was acting, how different he was. They were shocked that a few bites of pasta would cause such a huge change in him.

His grandmother felt terrible (I really hope she doesn’t mind me sharing this story) and she realized then and there that despite her good intentions, she really needs to take what we say seriously. That when we say he has extremely bad reactions to gluten, we mean it.

It’s a lesson I wish we could make really clear to those around us without them having to see it first hand… but I have yet to find what works. Parents are proud people and they raised children successfully. Plus, Autism is still very foreign to many people, especially older people. To some people, they just see wild, disobedient children and some even go so far as to dismiss Autism entirely… they figure it’s just the parent’s fault these days.

What ever the case, it’s hard to convince more experienced parents that they really don’t know better than you. But for your sake, for your child’s sake, you have to.  Don’t wait until they learn the lesson the hard way. Sit them down, show them videos, show them information, make them understand.

You have to prepare your child for the world as best you can but you also have to prepare the world for your child.

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