Tuesday, 19 January 2010

• Let's Talk About Autism

  This is a very pertinent and personal topic for me, being the mom of a child with Asperger's Syndrome.
  
  Here is a very good, succinct summary of Asperger's Syndrome (AS) from Web MD:
  
  Asperger's Syndrome - Symptoms
  

  Asperger’s syndrome, the main symptom is severe trouble with social situations. Your child may have mild to severe symptoms or have a few or many of these symptoms. Because of the wide variety of symptoms, no two children with Asperger's are alike. 
  
  

  
  

  Symptoms during childhood

  Parents often first notice the symptoms of Asperger's syndrome when their child starts preschool and begins to interact with other children. Children with Asperger's syndrome may:

  • Not pick up on social cues and may lack inborn social skills, such as being able to read others' body language, start or maintain a conversation, and take turns talking.
  • Dislike any changes in routines.
  • Appear to lack empathy.
  • Be unable to recognize subtle differences in speech tone, pitch, and accent that alter the meaning of others’ speech. Thus, your child may not understand a joke or may take a sarcastic comment literally. Likewise, his or her speech may be flat and difficult to understand because it lacks tone, pitch, and accent.
  • Have a formal style of speaking that is advanced for his or her age. For example, the child may use the word "beckon" instead of "call" or the word "return" instead of "come back."
    
  • Avoid eye contact or stare at others.
  • Have unusual facial expressions or postures.
  • Be preoccupied with only one or few interests, which he or she may be very knowledgeable about. Many children with Asperger's syndrome are overly interested in parts of a whole or in unusual activities, such as designing houses, drawing highly detailed scenes, or studying astronomy. They may show an unusual interest in certain topics such as snakes, names of stars, or dinosaurs.
  • Talk a lot, usually about a favorite subject. One-sided conversations are common. Internal thoughts are often verbalized.
  • Have delayed motor development. Your child may be late in learning to use a fork or spoon, ride a bike, or catch a ball. He or she may have an awkward walk. Handwriting is often poor.
  • Have heightened sensitivity and become overstimulated by loud noises, lights, or strong tastes or textures. For more information about these symptoms, see sensory integration dysfunction.

  A child with one or two of these symptoms does not necessarily have Asperger’s syndrome. To be diagnosed with Asperger’s syndrome, a child must have a combination of these symptoms and severe trouble with social situations.

  Although the condition is in some ways similar to autism, a child with Asperger's syndrome typically has normal language and intellectual development. Also, those with Asperger's syndrome typically make more of an effort than those with autism to make friends and engage in activities with others.

  My son, Owen (13), has (or had) all of these symptoms, as well as specific learning challenges.  He is currently doing very remedial work in math and reading, although he could talk a history buff into oblivion up until WWI.  He knows more about superheroes than I ever wanted to know - and tells me the same things about them every day from time immemorial (well, since he could really talk, which was around age 4 when he would answer most questions with the word "dinosaur").  And his spiritual insights are often uncanny.  In this area, I think he takes after his daddy! 
  
  Owen's extra-special interest is drawing.  He will, if time permits, draw 50 - 100 drawings a day.  All superheroes.  The most precious drawing he did, though, was of my husband Kevin.  A few weeks before Kevin died, Owen drew a picture of him as a superhero flying up to Heaven.  That is a framed keeper.
  
  This week, Owen began traditional school in a non-traditional environment.  He attends Summit Academy, which is a charter school created specifically for kids with ADHD and/or Asperger's Syndrome.  It was a stroke of brilliance.  The founders of this school will be forever blessed by parents like me all 'round.  The classes are small, so there is a fabulous student/teacher ratio.  And every single child in this school has "issues" of one sort or another.  They even integrate martial arts into the program to allow the kids a structured environment in which to let off steam and learn respect, confidence, and discipline.  Best of all, it's tuition-free. 
  
  But enough about my son's school - I will post about this frequently!  For now, I'd like to explain the differences between Autism and Asperger's Syndrome, because people are often unclear on this point.  Frankly, so are the professionals.  Some consider them to be entirely separate entities, while others - like our pediatric neurologist - see them as different points on the Autistic Spectrum. 
  
  The typical view of autism is represented by Dustin Hoffman's "Rainman" character; and this person is at least verbal.  The Rainman character is actually defined as "autistic sauvant" - his ability to calculate numbers is way beyond the scope of us neuro-typicals.  I do know people with autism who are completely non-verbal.  Trust me when I say that people with Asperger's Syndrome are quite verbal - at least my son and his classmates are!  For a very good explanation of AS from his point of view, watch this video I found on uTube.  This young man does an excellent job explaining himself.
  
  Some advice for those who are in contact with people with Asperger's Syndrome or a high-functioning form of autism (my non-professional, but experiential perspective):
  
  1. Please speak with clarity - do not suggest, but be very clear about what you want them to do.  For example, my mother (who lives with us) will often ask Owen to get the mail.  For 2 years she would say, "Is there any mail?" to which Owen would answer, "I don't know."  She meant, "Owen, please get the mail."  Owen didn't get it.  I did, because this is how my mom asks people to do things for her.  I understand exactly what she means.  I finally told her (more than once!) that Owen is not disobeying her - he thinks she is really asking if there is any mail, and how would he know if he hasn't seen it?  I explained that if she wants him to perform a task for her, she must be specific  in her request.  Now she says, "Owen, will you get the mail for grandma?"  And he quickly obliges.
  
  2. Please understand that this person will probably not get your attempt at sarcasm - they typically hate teasing in any form.  You know you don't mean what you say, but a person with AS will take you literally at your word.  Be very careful about vague references as well.  Those are not on their radar screen.
  
  3. Please understand that this person is not trying to annoy you when peppering you with the same questions over and over, or by telling you the same thing over and over.  This is how they understand social interaction.  If they are being a Johnny One-Note, try to veer off on another topic, or simply tell them in a polite, kind manner that they have told you this before, and start another topic.  People with AS will never learn how to interact socially unless they get a little help from their friends!
  
  4. If you need to create a social signal with someone with AS, come to an understanding of what that signal will be ahead of time.  For example, if you are going to a play, agree beforehand that if they are too loud you will whisper a special phrase so they remember to stay calm and quiet.  I will often squeeze Owen's hand or put my hand on his back with rather firm pressure to calm him.  And after 13 years, he has come to know my subtle raised eyebrow as a "watch it" signal!  Comes in handy when I am leading worship in church and he is in his seat with pencils and reams of paper in hand!
  
  5. Remember that change of any kind is very disruptive to people with AS.  People on the Autistic Spectrum thrive on schedules.  Of course, change happens in any given day whether we like it or not.  My son has dealt with changes from car trouble to the death of his father.  What I have tried to do is keep some sort of consistency as much as possible so that he could always rely on one thing on any certain day.  That "thing" for Owen is having a generous supply of pencils and paper so that he can draw.  It centers him so he can take on any changes in schedule without a complete melt-down.
  
  6. Speaking of melt-downs, they will happen.  Just as we neuro-typicals reach a breaking point, people with AS do the same.  Their melt-down may occur because they expected barbeque sauce with their nuggets and got honey-mustard instead.  My son had one a couple of years ago when I gathered up a good bunch of his old action figures to sell or give away at a garage sale.  I had no idea what I had done to him!  He had always had them, they were familiar, they were a part of him - and I was callously ripping them away.  Bad mommy!  He has had to learn several hard lessons about letting go, and over time the melt-downs have become less frequent.  Owen is sort of an atypical AS guy, though.  He is usually happy and laid-back, thanks to years of nurturing homeschool and church environments I think.  Or it could just be his personality, who knows?  Some families are not as blessed, and have a very difficult time with melt-downs.  Patience.  Occupational therapy does a world of good.  I still remember the days of rolling Owen up in a yoga mat and squeezing him like a tube of toothpaste.  He loved it.  He still thrives on bear hugs several times a day.
  
  7. Persons with AS have little concept of personal space.  Try not to be creeped out!  Step away.  If they insist on being in your face, just tell them politely that they are invading your space and you are not comfortable with people getting that close to you.  Generally, their feelings won't be hurt.  Rather, they will appreciate the guidance.  "Oh, OK." will probably be their response.
  Well, these are just a few words of advice from me.  I hope it's helpful, or at least informative. 
  
  Have a good one!
  -m.
  
  
  

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