EDITED: Discovering Corbin's Autism

They say that 1 in 68 children are on the autism spectrum.  If this doesn't alarm people, it should.  The autism numbers keep rising and as of today, there is no "cure".

Corbin was an unexpected gift.  We laugh now at the story when we first learned we were expecting our third child.  Our family of four was complete with the two girls.  We never intended or expected to have a third child.  I was on the pill, and I took the pill militantly.  It had always been an effective form of contraception for our family in that it worked when I was on it, and when I intentionally went off it to get pregnant with Courtney and Carly, there were no problems.  We were at a point in our lives where we couldn't afford another child, so when we discovered we were pregnant again, we called our parents to deliver the "bad news".  How stupid!  I remember when Chad told his mom, "We have some bad news.  Christy is pregnant again," his mother literally laughed out loud and said that it wasn't bad news!  (Of course it wasn't bad news.  We were young and dumb.)

Because I had a sister that passed away from spina bifida, all of my pregnancies were closely monitored for genetic risks.  I was given level II ultra sounds to make sure none of the markers for spina bifida were showing.  When we were given the chance to find out the gender of the baby (as we had done that with the girls), we were so happy to hear that we were expecting a boy.  Again, what an unexpected gift - first, to even be having another child, and second, to be having a boy after having two girls was such an excitement.

Corbin was born without any complications during delivery.  He also developed normally in the sense that he did not have any speech delays or physical delays.  He walked and talked within the normal range.  He had normal eye contact.  He did not regress.  Nothing seemed out of the ordinary.

Corbin and Chad.  Corbin is about 2.  Love this photo, which is why it is behind glass in a frame.

It is only now, at age 12, when I look back on his life that I see things that I "missed".  These things aren't necessarily alarming and there was no way I could have known at the time that he was showing some signs at the time.

The signs and symptoms of autism vary widely, as do its effects. Some autistic children have only mild impairments, while others have more obstacles to overcome. However, every child on the autism spectrum has problems, at least to some degree, in the following three areas:

• Communicating verbally and non-verbally
• Relating to others and the world around them
• Thinking and behaving flexibly



http://www.helpguide.org/mental/autism_signs_symptoms.htm

Looking back to the very early years, it is apparent that Corbin has some mild to moderate sensory issues.

Moderate Sensory Seeking: Water. Corbin uses water to calm himself.  At a very early age - very early, like age 2, he started running his own baths.  He would not plug the tub but would run the water out of the bath faucet and sit under it for extended periods of time.  He would take these "baths" up to 10 times a day.  (Sounds excessive now, but back then it seemed like he was playing.  For the most part he was "playing".  It was his happy place.  It was also not harming him.)

I found him sitting in the toilet once (fully clothed) when he was about 18 months old.  He was perfectly happy sitting in the water like it was his own wading pool.  He was also drawn to puddles.  He would plop himself right in the middle of a puddle and splash about. 

Tidy bowl Tot - 18 months

Corbin, aged 4, snuggled with a blanket.

 

Corbin in kindergarten at a pilgrim days program.

 

Mild Sensory Seeking: Chewing objects.  Corbin went through a phase in grade school where he would chew his shirt.  He would chew holes in his shirt and there would be a big wet stain.  Even now that he is older, he chews on plastic cups, paper plates, and even metal from pop cans.  (No, I don't allow him to do this.  I usually find signs of it after the fact.  Like, a half eaten paper plate.  No joke.)

 

Sensory Avoidance: Picky Eater.  Corbin will only eat a few kinds of foods.  He will not "substitute" off brands or other flavors.  If something is slightly off, he will completely reject it and not eat it.  It makes for sad holidays when all he will eat is a biscuit and avoid turkey, ham, mashed potatoes, stuffing, vegetables, etc.

 

Sensory Avoidance: Crowds.  Looking back, I see so many instances of sensory avoidance to crowds that I just shake my head and wonder why I couldn't see it back then.  Examples:

• Cheer competitions.  Cheer competitions are extremely LOUD.  Lots of people yelling/cheering, very loud music, and lots of crowd energy.  Corbin would literally shut down and go to sleep.  He would pull a blanket over his head to shut out the light and would fall asleep.  It was the only way his brain could handle it.
• Disney World.  While walking in a crowd we had to stop for a parade.  Instead of being interested in watching the parade, Corbin sat down, pulled out his portable legos, and went into his own little world.  Again, it was his way of pulling into his own world and shutting the noise and crowd out.
• Hockey Rink: Bringing Corbin to watch Chad' hockey games was never fun for Corbin.  Many times he would pull the blanket over his head and go to sleep on the bleachers (exactly like the cheer competitions).
• Classroom noise: Classroom noise bothers Corbin immensely and he has trouble focusing on tasks if the students are noisy or chatting.
• Public Places, In General: Corbin only minimally tolerates public places (e.g,, restaurants, malls, grocery stores, etc.)  When he does go out, the time frame is usually short and it isn't long before we hear, "Can we go home, yet?"
 

Sensory Avoidance: Clothing and shoes. Examples:

• Avoided wearing shoes when little.  He would go outside and I would tell him that he needed to put his shoes on.  He would say to me, "No, thanks, Mom - I'm just going to wear my feet!"
• Hates tags/seams in clothing: Self explanatory.  Thank goodness all of the t-shirts now from places like Old Navy and Target have no tags.  Best thing ever!
• The kid spent the first 8 years of his life naked.  It drove the girls crazy when they would have friends over and Corbin would come around the corner with no clothes on.  It got to a point when he started growing older that it was necessary/mandatory to wear something, because he cannot have his junk hanging out anymore.  It has gotten much better now that he is older, but to this day, he prefers to be undressed.  Even when he gets home from school, he usually goes to the "bath" (lets water run), and then runs around in jammy pants.



Children with autism spectrum disorders are often restricted, inflexible, and even obsessive in their behaviors, activities, and interests.

Obsessive Interests:

• Toy Guns.  Corbin has an arsenal of toy guns.  This is all he asks for when it comes time for birthdays or Christmas.  He did do imaginative play when he was younger (which is why he is on the high functioning end of the spectrum - lower functioning autists usually do not engage in imaginative play), playing with his guns: He pretended to be a sniper.  He called his guns his "shoot 'em" and ran around and pointed his gun at inanimate objects and sniped things.  (This subsequently convinced my daycare lady that he was going to be kicked out of school when he went to kindergarten, and that he was going to grow up to be Dylan Klebold.)  Everything that was NOT a gun, turned into a gun.  A spoon, a coat hanger, a stick - you name it, he turned it into a gun.  He would then get lost in his own world and go snipe things.  He did NOT want to play with other kids his age.  He preferred to be alone, in his own world, chasing after imaginary bad guys.
• Video Games.  Chad was a big PC "gamer" when Corbin was around 2 years old.  Chad would play first-person shooter games and Corbin was obsessed.  He was NOT allowed to play any violent video games when he was little, but he would try anything and everything to get in to the first person shooter games.  One time we were at Best Buy - he was about 5 - and he found a first person shooter game being demo'd on a PC.  We told him that he could not touch/play the game, but he was drawn to it like a magnet.
• Facts.  When Corbin was younger, we used to call him Cliff Clavin.  Cliff Clavin was a know-it-all who often recited facts on the 80's sitcom Cheers.  As Corbin got older, he learned to relate to others by reciting facts.  Corbin's interests in facts were usually attained from Netflix (weather/space shows, shows on war, shows on dinosaurs) or library books.  [Most kids check out library books that are entertaining.  Not Corbin.  He brought home books about Hurricanes, WWII, or space.  Not typical.]

Unlike the severe withdrawal from the rest of the world that is characteristic of autism, children with Asperger syndrome are isolated because of their poor social skills and narrow interests.  Children with the disorder will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion.   They may approach other people, but make normal conversation difficult by eccentric behaviors or by wanting only to talk about their singular interest. 

Corbin and Chad at Ft. Myers Beach, FL

 

Rigidity, Inflexibility:

Corbin is a rule follower.  He responds well to structure and if you throw something at him that is not in his routine, he cannot handle it. I have learned to try to communicate something that is out of his ordinary routine as early as I can as to avoid him having a hard time with it.

Formal Speech:

Children with Asperger syndrome often exhibit expertise, a high level of vocabulary, and formal speech patterns.

This characteristic is very prevalent in Corbin.  He has always used adjectives to describe things that normal kids would not typically use.  For example, a normal kid might say, "I saw a dead turtle on the road".  Corbin would say, "I saw a turtle languishing on the side of the road." A normal kid would say, "I think (blah blah blah)."  Corbin says things like, "I am calculating in my mind (blah blah blah)"  I can't think of any other examples right now, because honestly they happen so frequently, we are used to them.  Many times Corbin will say a sentence and Chad and I will just look at each other and silently communicate with each other/acknowledge that his autism symptoms are in full gear.

However, the biggest, most painful thing about Corbin's autism has been his lack of friends.

Children exhibiting Asperger characteristics are often isolated because of their poor social skills and narrow interests. They may approach other people, but make normal conversation impossible by inappropriate or eccentric behavior, or by wanting only to talk about their singular interest.

Historically, Corbin has been bullied.  He had years in school where he was so nervous to be in class or go to school that he went through a phase where he exhibited school avoidance behaviors.  He has been punched, had nasty things written about him on playground equipment, and has been ostracized by classmates.  He sits alone at lunch.  He is the last to be picked for team sports.  Nobody wants to be his friend.

I saw this first hand on the last day of school - we were at a bowling field trip and the kids broke off into groups of 4 for bowling teams.  Corbin was not invited to join any groups and was actually shunned away from one group.  I stepped in and asked if Corbin could join their team and they reluctantly agreed.  Corbin had a good time bowling that day, but I don't know what would have happened if I had not stepped in to ask if Corbin could be on a team.

While living in Minnesota, we tried switching schools to give him a fresh start with new classmates.  Unfortunately, at that time Corbin was undiagnosed and his ASD symptoms presented themselves very early on.  Kids pick up on these things and don't want to associate with him.  It didn't take very long for him to be sitting alone at the lunch table or being the last kid picked for team sports.

When we finally got his diagnosis in October 2012, we felt relief in the sense that we could be a name to what was going on with him and maybe begin to help him.  However, there has been a huge delay in getting him help because of insurance formalities and because we moved from Minnesota to Texas.

Starting a new school in Texas was overwhelming for Corbin.  Not only did he switch from an elementary school to a middle school, he had a very large culture change.  Things are just different here.  Things are taught differently and in general, attitudes are different. 

Corbin is a very literal person so he doesn't understand sarcasm or humor.  Sometimes he does, but it just depends on the situation.  He is devastated that he has now started his third school in three years and yet again he is shunned by his classmates and has no friends.

Yet as Aspies go through adolescence, most realize that they are missing out by not fitting in. It is at this point in their lives that they crave friendships, yet this unfulfilled desire on top of high school pressure to conform, constant rejection and harassment can often cause clinical depression in Aspie teens. They grow more isolated even as they crave more interaction with others. Young Aspie children often believe everyone in their kindergarten is the same and everyone is a friend. Aspie teens know better.

This is the hardest part of Corbin's autism right now.  He has said many times, "I just want to be a normal boy.  I am not a normal boy."  It breaks my heart.  He has said, "I walk through the halls and I might as well be a ghost."  This has actually caused Corbin to become more withdrawn and pull inward within himself as a self-preservation method to survive daily life in school.  Become invisible so nobody will point out that you're different.

Yet, Corbin craves having friends.  He wants to just have a normal social life.  He has NEVER had a normal birthday party with several boys in attendance.  He has never been invited to other boy's birthday parties, or to hang out and do normal boy things, like shoot hoops or ride bikes, or skateboard.

The pattern this causes is that Corbin prefers to stay inside and play his video games.  He is old enough now to interact with other kids his age via video games and when he talks to them over his headset, he sounds and acts like a typical teenager.  He doesn't say awkward things or use formal speech.  It's hard to take this away from him, because it is about one of the only normal things he has going for him.  Yet, it really isn't teaching him social skills at all.  He isn't reading facial expressions or body language.  He isn't in real life dealing with real life situations.  He's in a virtual world where everything is fast moving and pretend.

There are times when we go out of the house and Corbin will decline to join us because he prefers to stay in his virtual world where people talk to him and he is happy.  He doesn't want to go out into the loud (sensory overload) world and interact with people.  There are times when we do force him to come, just to get him out of the house.  A couple days ago there was a community social event at the pool.  They served hotdogs and lemonade, and had a blow up bouncy waterslide.  We arrived at the pool early before the event started and Corbin was swimming in the pool more than he normally does.  You could tell he was waiting for the event to start.  When it finally did, he ran over to the bouncy water slide and went down that thing at least 30 times.  It was a glimpse into what a normal kid should be.  He happily interacted with us (his family) and had a great time at the pool.  In fact, I was sunburned and wanted to leave, but my husband wanted to extend the social time just for Corbin.  I understood completely as those social times for him are so few and precious, we treat them like a fragile glass that we don't want to shatter.

Adults who speak to Corbin often find him well mannered (he is a VERY POLITE kid), and very well spoken (because of his advanced language skills).  He is very normal looking, in the sense that he doesn't look like a disabled child.  It is difficult for people who aren't familiar with high functioning autism to understand what Corbin's struggles are.  I am hoping that his speech therapy will help him, which will be starting in two weeks.  His initial meeting with the therapist went well.  Corbin defined his own goals, which were the following: 1) Make friends.  2) Express feelings properly, and 3) Understand sarcasm and humor correctly.  I was not present with the therapist when he made these goals, but I was proud of him for recognizing what he needs to work on because are correct.

Corbin turns 13 in a few weeks and I don't know what to do to help him through these difficult teenage years.  It's bad enough for a normal kid to go through puberty and middle school.  It's incredibly difficult for an autistic child who has no skills or tools to make it through a normal day.

All I can tell you is that Corbin is a) not a violent person.  He's often too sensitive, too caring.  He would literally give you the shirt off his back if you needed it.  b) he is very acutely aware that he is not "normal" and craves being a normal kid; and c) he's very loving, affectionate, and sweet.  He truly will make some girl a great husband and a great father some day.  I love him so much.

EDITED TO ADD: I want to make clear that I did not diagnose Corbin with Autism or ADD.  He actually was evaluated by his pediatrician for ADD and received a diagnosis for ADD-inattentive type in 2009.  When my nephew was diagnosed with Asperger's, I was curious about the disorder and poked around in some internet support groups just to gather some information for my own personal concern/interest.  It was there that I realized that while my son's symptoms do not present in any way similar to my nephew's symptoms, that autism is in fact a spectral disorder and he fit some other symptoms on the spectrum.  Instead of guessing (even though I knew it in my gut), in October of 2012, we had him professionally evaluated by the Alexander Center in Minnesota.  The Alexander Center specializes in developmental-behavioral pediatrics.  It was there that he received a professional diagnosis from both a pediatric psychologist and a speech and language pathologist.

I felt the need to add this because some people reading my blog are not in touch with me except through social media and may not have known or understood that he was professionally diagnosed.

My handsome fella :)