Understanding My Aspergers Boy

Every year in September I produce a document that I have written about our son and present it to his teaching team.  It is my expectation that they share it with whom ever needs to know.  Every year I adapt and modify it to reflect changes and progress.  I try to incorporate elements of his IEP (Individual Education Plan) to make it teacher friendly.  I have done so for the past 5 years.  Why?  Because I am the expert on B.  Why? Because nothing a degree, textbook or a doctor can tell me will change what I see, feel and know to be true about him and his diagnoses.

I have decided after careful consideration to share some of it with you. My hope is you will understand what it's like to live with a different kind of mind.  Perhaps you will understand that nothing in our world on the hill is cookie cutter.  Perhaps you will better understand my last blog post.

B’s family, friends and school community must keep in mind that he is little boy first, he is not his diagnosis.  However, his diagnosis does explain some of his behavior and reactions to some situations.  Any techniques used with a child who has Aspergers will also benefit a typical child.

All About B...

In May 2006 B was diagnosed with;
Autism Spectrum Disorder - Aspergers
Attention Deficit Hyperactivity Disorder
Obsessive Compulsive Disorder
Oppositional Defiance Disorder

In April 2011 B was diagnosed with Wolffe Parkinson White Syndrome. WPW is a very serious heart condition in which there is an extra electrical pathway (circuit) in the heart. It can lead to episodes of rapid heart rate or tachycardia.  He is scheduled for ablation surgery in March. (Thus throwing off every routine and sense of control this little boy has.)

Aspergers is a pervasive development disorder characterized by an inability to understand how to act socially.  Identified children may not recognize verbal cues or understand social norms.  They may have difficulty expressing their own feelings and perceiving others’ feelings. Children with Asperger’s typically make efforts to make friends, but it is extremely difficult because they lack social awareness and are preoccupied with their own agenda.  They can be extremely egocentric. Most have excellent rote memory and become intensely interested in one or two subjects (sometimes to the exclusion of everything and everybody else). He is currently passionate about superheroes, monsters, zombies and video games. Like every child, each child with Aspergers is completely unique and brings his or her own twist.

With constant guidance and use of social stories B has been able to make many friends.  He is learning that it is important to know people by their name not by the color of their hair or where they sit in the classroom..  B is becoming increasingly considerate of others feelings and is aware when he is not.  He may say; “I don’t want to hurt your feelings but…” “I shouldn’t say this but…”.   Please remind him that sometimes you shouldn’t say the things you are thinking out loud. He is very loving if you are important to him.

He is a literal thinker and needs concrete rules and guidelines.  He continues to struggle with theory of mind.  He believes everyone thinks as he does and becomes frustrated when they do not or when people do not understand what he trying to say.  Please ask him for clarification and don't assume you know.

B's emotional and physical health and success academically depends heavily on routine and sameness.  The more things are the same, the more confident and less anxious he is. Any change in his routine can cause anxiety.  This includes new supply Teachers, Educational Assistants and rules.  Children with Aspergers often have repetitive routines or rituals.  It is extremely important that they follow their routine because disruption can cause shut down.

B needs to feel like he has control over his environment.  Anxiety can present with physical symptoms like stomach aches and being tired.  He may also shut down or refuse to work.  He may act out in frustration.
How he experienced an occurrence the first time is how he expects it to be always. The first days and weeks of school set precedent for the year. 

More about B…

• B is an excellent artist. He has spent years working one on one with a local artists to pursue his passion.  We use his passion to our advantage rather than discourage it. 
• B loves to draw any opportunity he gets.  It is important to remind B that everything counts so not to draw on school work.  
• He also uses drawing to self regulate.  If he is anxious or overwhelmed he will draw more.
• B is an blue belt in Karate.
• B is very funny.
• B is very self aware and will require breaks to self-regulate. Most often to draw but he may need to walk the halls.
• B scowls often and doesn't make eye contact.  That’s okay.  He also has a great smile and infectious laugh.
• He zones out. Often.  Ask him to pause what ever is going on in his brain and come back to it later.
• B understands sarcasm (that other children may not) and is sarcastic.  We remind him that sarcasm often appears to be rude even if that is not his intention.
• When B is anxious he will repeat himself.  Sometimes just mouthing the words again.  Remind him "no flash backs.
• B is very private.  He may choose to use the washroom during class time so he doesn’t have to be in the washroom with other boys.  Eleven/twelve year old boys don’t tend to respect privacy very much.

Ideas to promote success… (once again may work with EVERY child)

• Have structured environment with a consistent routine. 
• Provide him with a written schedule.  He needs visual cues to keep him on task.  Picture with word charts work best.  Even if he doesn’t appear to be using them keep them accessible.
• Be aware of the environment.  Is it over stimulating? Noisy, visually distracting, smelly, too hot/cold. 
• Be aware of who he is sitting with.  He may look to a desk partner’s work to keep him on task.
• Use a kind but firm approach always.  You will get better results.  Yelling does not work - ever.
• Be consistent in word and action.  Make rules and stick to them.
• Pick your battles by deciding what is really important because you can not back down once you have made a request.
• He may fixate on a single thought or activity and stop paying attention to everything else around him.  Therefore he will need monitoring and reminders to keep him on task.
• Keep instructions simple.  The more complex the more frustrated he will become.
• He knows most of the information you are looking but you have to wait for him to retrieve it. 
• Every new situation needs to be explained and modeled exactly as you wish.  Sometimes more than once. Sometimes every time.
• Use social stories to help explain new concepts.
• He is a visual and physical learner.
• After a class lesson he may need to be re-taught one on one. 
• Do not insist on eye contact, he is still listening even when he isn’t looking.
• Intervene before poor behaviour escalates.
• Never miss an opportunity to reinforce good behavior or work.  Verbal praise and rewards like computer time are effective.
• When using a reward/consequence system make sure it is clearly explained and he understands it.  Have him repeat it back to you.  Just because he has been told doesn't necessarily means he comprehends.
• Detention will not work.  Loss of privilege may.  Losing a recess is actually a reward because then he doesn’t have to deal with confusion and difficult situations on the playground. Plus he can draw during detention.
• Make sure all staff, including relief and support staff , know who B is and what his unique needs are.  

B doesn’t have to change for us.  He is who he is.  We need to adapt to him. Change and challenges will happen through out B’s life and it is our job to make sure he has the tools to cope with them and excel.  We are doing our job. Please work with us.

Excellent resource:
Parenting Your Aspergers Child by  Alan Sohn Ed.D and Cathy Grayson, M.A.

Side note:

Those of you who have been following my blog know that I am currently suffering from a tremendous amount of swelling in my brain due to side effects of surgery.  Writing and expressive thought is extremely hard (but not as hard a actually speaking).  Thank you for your patience and understanding if I am not clear when I write.  I am trying very hard.