The Autism World

                People with autism perceive the world very differently from the rest of us.  To imagine what it must be like, try to imagine yourself in an entirely foreign culture where you don’t understand the language or the customs.  You might learn to muddle along by trial and error but things keep changing abruptly and you don’t understand why sometimes something is okay and sometimes it isn’t.  It would be very overwhelming and frightening.  You would cling to the few things you’d discovered which seemed to work and be discouraged to go out and try something new.

                As a parent of a child with autism, you will have to take on a role as the interpreter between the world and your child.  You’ll learn a new way of thinking about the world, where rumbling motors become a threat or sliding elevator doors become the most fascinating feature of a building.  You’ll have to learn to visit the autism world and see things through your child’s eyes and mind.  It’s difficult but possible, if you can be open-minded.

                First, here are a few things you should know about people with autism.  Statistically, they’re better at seeing patterns in large amounts of information.  They can pick up an incredible amount of detail (which may be how autistic savants are able to perform their amazing feats).  They tend to be better with spatial and visual memory, making it easier to remember things they’ve seen than things they’ve heard.  Someone with autism can be focused on details the rest of us ignore.  Children with autism often perform repetitive play: opening and closing cupboard doors, spinning wheels on toy cars, stacking blocks or lining up toys in long, precise lines.  Temple Grandin, a woman with high functioning autism, tells us that she thinks entirely in pictures rather than in words.  If you ask her a question, she finds the answer by mentally sorting through visual images.

                It’s statistically common for someone with autism to have unusually strong or weak senses.  Their sense of touch might be so sensitive that the slightest touch feels like being hit or it might be so weak that they have to bump or press strongly against an object to have any sense of it being there.  They might be driven crazy by the buzzing of a fluorescent light or not hear someone talking to them less than two feet away.  The sensory overload can be overwhelming, leading to inexplicable tantrums which can mystify a parent.  A weakened sense can be frustrating.  Your child may literally not hear an instruction rather than refusing to obey it.

                My eldest son has strong oral sensitivities, meaning the ordinary act of chewing his food is intolerable to him.  We were having difficulty transferring him from baby food puree to solid food and were told to withhold the puree.  When he got hungry, he would eat.  Normally, this would be good advice.  But it didn’t take the sensitivity into account.  No matter how hungry he got, the act of chewing was too upsetting and difficult.  He wouldn’t eat solid food any more than a starving man would swallow molten metal.  If your child is having consistent difficulty with a task, sensory overload might be the reason. Until the overload is dealt with, they won’t have success with the task.

                On the other hand, he also has auditory processing problems.  His hearing is fine but his brain simply doesn’t pay attention to what his ears are telling him.  We’ve had to teach his brain to pay attention to what he’s hearing.  It’s still difficult to get him to pay attention when he’s excited or highly focused.  It was a long, drawn out procedure of consistently rewarding him for listening.

                Another challenge you’re likely to face as a parent is your child’s inability to focus on what we would consider important.  My husband has Asperger’s and he remembers feeling completely overwhelmed by distractions at times.  He described it as being like trying to conduct an ordinary conversation with each of you standing at opposite ends of a busy arcade.  The constant barrage of noise and flashing lights keeps interfering with any attempt to concentrate.  If this is the case, it can help to keep your instructions simple with only one or two steps at a time.

                You could be facing the opposite problem as well.  Although there are times my husband gets hopelessly distracted by background information, there are also times he can completely shut it out.  He was working on a difficult problem for his job when he felt a tap on his shoulder.  There had been a fire and the alarm was going off.  But my husband didn’t hear it until the fireman tapped him on the shoulder and broke his concentration.

                This isn’t exclusive to people with autism.  We all have the ability to focus our concentration to the exclusion of everything else.  It’s been shown in multiple experiments.  If you give people a task, like watching a particular dancer or counting passes, then they’ll miss something which would otherwise be completely obvious, like a costumed individual passing or waving.  But it appears to be harder for people with autism to control their focus.

                Many people with autism seek an extraordinary level of control over their lives and can become extremely agitated at any disruption in their preferred routine.  For some, a seemingly trivial change such as rearranging books on a shelf can trigger a catastrophic reaction.  There are theories that the overwhelming distractions of the everyday world are why people with autism get locked into their rigidities.  It is easier for them to deal with an artificially predictable routine than the unpredictability of ordinary life.  As a parent, this can mean you limit yourself to only working on one or two changes at a time, to avoid overwhelming your child.

                A common soothing technique is self-stimulation, or stimming.  People with autism will indulge in repetitive behaviours which may seem strange, such as flapping their hands, spinning in a circle, moving items in front of their eyes, stacking toys.  There are an infinite variety of stimming behaviours and some will stim for hours at a time if allowed.  More articulate members of the autism community tell us that these behaviours feel good, although they can’t explain why.  Sometimes stimming behaviour can be potentially dangerous, such as banging their head or arm, picking at skin or pulling hair.  When something damaging feels good to your child, it can be very difficult to change it.  Ask for professional help.

                There are lots of things you can do to help your child.  If your child often ignores instructions, then make sure you have his or her attention before speaking.  You can also reinforce your words with visual reminders.  We have a large calendar for each of our boys which outlines their morning, afternoon and evening activities for the week.  We also use a board with two large squares marked “First” and “Then” to help them with difficult activities and for moving between activities.  We’ll put an image of a plate in the “First” section and a picture of the computer in the other.  Then we can tell our son: First supper, then computer.  We leave the board out as a reminder during his meal and if he gets restless or begins to complain, we can use it again.

                It’s important to remember that your child isn’t trying to be difficult or obstinate, no matter how challenging his or her behaviour is.  There’s usually something he or she is trying to let you know.  It can take a lot of careful and patient observation to figure it out.  Once you know, you can remove the problem or work on a more appropriate way for your child to express his or her feelings.  But it’s important to try and be patient with both your child and yourself.  You’re both learning a foreign culture.  It’s going to take time but eventually you’ll find your way around.

1 comment:

  1. I cannot hold my tears when I read the first paragraph. I hope I can share my son's world, and somehow understand him and help him.


Page Descriptions

Dealing with Diagnosis: Parents talks about the emotional impact of diagnosis. This is a major life-changing event which can leave people feeling isolated, angry and hopeless. You’re not alone in this.

Dealing with Diagnosis: Friends and Family offers suggestions to the extended family and friends of newly diagnosed families. We all want to help and make things better but sometimes the best-intentioned gestures can end up hurting.

Dealing with Other People's Reactions warns of some of the less than positive responses you can expect and talks about the stigma of accepting the "special needs" label.

The Autism World is an explanation of how people with autism experience the world around them. The ability to guess what your child is experiencing is one of the best tools you can have in helping and teaching them.

Tips and Tricks is a collection of suggestions and ideas contributed by parents. I’m always looking for more suggestions to share. Contact me with your ideas.

Choosing Therapies and Treatment isn’t about specific types of treatment. Instead it’s about what you should be looking for in a therapist or treatment expert. Every child with autism is unique and there’s no universal treatment.

Changing Challenging Behaviours is a basic overview of the Applied Behaviour Analysis system. While I recognize that not every child works best with the intense behaviour treatment based on ABA, the system of figuring out what is behind challenging behaviours is an effective way to understand what your child is trying to tell you. Understanding is the first step to trying to change the problem.

Communication offers ideas on how you can help your child with autism to communicate. Without an ability to tell you what he or she wants, frustration quickly leads to behaviour problems.

Referrals for Families are options for families with special needs to enjoy some of the ordinary experiences in life. It lists examples of non-therapy professionals and businesses who are willing and able to adapt to autistic children.

Finding Help: There are three sections, pre-diagnosis, getting a diagnosis and post-diagnosis. It's my attempt to give you a checklist of options.

Helpful Books: A list of books that I've found to be useful, in the order I discovered them.

My Blog is where I share new information, what's working (and not) for our family. Posted daily (mostly).