22 September 2011

Finally Breaking the Silence

I've had the official answer since the end of June even though I knew before then what I've known for quite some time.  It's still really hard to talk about it because most people don't understand it.  And I'm not comfortable talking to people and saying, "Emi is deaf and Eriks has Asperger Syndrome."  Although this is a fact, I don't like labeling them or want it to define who they are.  However, I feel more and more like I have to explain the above to people all the time.

I'm sure my regular readers remember posts where I've talked about Eriks' behavior issues and trying to diagnose him.  Originally Dr L diagnosed him with mild AD/HD and then starting seeing behavior that made her change her mind.  So she got a bit more aggressive on testing him and even giving us a fairly intense questionnaire to answer.  When a bunch of our responses starting pointing in one direction she chose to give Eriks an IQ test.  But a different type of IQ test that wouldn't only gauge his intelligence level but also give answers to his behavior patterns.

To make a long story short, his diagnosis was handed down at the end of June.  Eriks has an autism spectrum disorder called Asperger Syndrome.  If you take the time to go to the link, especially if you know him, you will see that many of the behaviors typical of AS, Eriks exhibits.  The ones I see most are: lack of social and emotional empathy, impaired nonverbal behaviors such as eye contact (you can't get him to look at you when you are talking to him if you paid him), engaging in a long-winded and one-sided conversation (he can go on and on about things like you've got nothing better to do than listen to him), fixation on certain topics (he will ask you 10,000 questions about a Star Wars character you know nothing about until he gets the answer he wants to hear), repetitive motor behaviors (he has a pattern of tapping on his fingers over and over again with his thumbs that either starts with the thumbs hitting his pinkies and going to his index finger or vice versa.  It almost mimics a nervous twitch), sensory issues (needing to touch things constantly), light and sound sensitivity and sleep problems are the big ones.  He also has a very exaggerated laugh for things he thinks are absolutely hilarious but the majority of us would think are dull or dumb.

I'm glad that we finally have an answer but I am an OCD person, just ask Lane, and Eriks' AS conflicts with my OCD.  I've always lacked patience because of my OCD and when I am doing something, I don't deal with interruption/disruption well.  Eriks doesn't understand because of his lack of social & emotional skills that there are things that are more important than the story he is telling me.  Another common trait among AS is easy frustration and anger, especially when what the person with AS is trying to articulate is not being understood or there is something that takes priority over their story.  Eriks also gets frustrated when things don't come easily for him, especially school work.  He is very smart.  Based on his IQ test results, he has an IQ of 112, but Dr L also said that because of his lack of long term focus (also common among AS), she honestly thinks that his IQ is probably 118 or 120.  Eriks knows he is smart so he assumes everything needs to come easy.  If it doesn't he gets mad and calls himself dumb.  As a parent this is so hard for me to see because I know it is so untrue.  But you just can't make him understand that.  I easily get frustrated with Eriks because I expect him to understand rules and directions and there are times he just doesn't.

The hardest part is he is socially isolated, especially at school.  Not because he chooses it, but because kids just don't get him.  It breaks my heart when he gets in the car some days and says, "No one wanted to play with me today at recess."  I know sometimes it's because of his AS he expects kids to do what he's interested in and when they want him to join what they're doing and he's not interested then he gets left out and sees it as being rejected by his peers.  There are kids at school that I know really do like him, but probably as I said, just don't get him so in his little mind thinks that they don't like him.

I'm going to wrap this up soon but Dr L was telling us some of the questions on the IQ test she gave Eriks that is given to kids who likely have AS or autism spectrum disorders (ASD) and this one still makes me laugh.  She told us going into her testing of Eriks that you can't give kids you suspect are AS or ASD a typical IQ test the rest of us would take because their brains don't process the info the same way.  One of the questions showed a man sitting on a tree limb with a saw facing the tree getting ready to cut down the limb.  Kids without AS would answer the question by saying that if he cuts the limb off the tree the way he is sitting, he will fall with the limb.  Eriks answer was, and I can't quote it verbatim, was along the lines of, "He shouldn't cut the tree because the tree will die.  Trees make oxygen and people need oxygen to breath and stay alive.  So cutting the tree is very bad for the environment and for people."  Dr L said that was a VERY typical AS answer.  It wasn't so much that the guy would end up falling and hurting himself but what was more important was how he was damaging the tree.

One of the best treatments for AS is OT (occupational therapy).  It helps kids with AS become more sensitive to others.  I'm not 100% sure what other benefits it has because we're still trying to get the final report from Dr L's office and recommendations for specific types of OT.

Living with Eriks puts a lot of stress on me since he demands so much attention due to his AS.  He physically drains me daily.  I know a lot of who Eriks is isn't because he had a choice in it, but at times all the time, I don't understand why he's refuses to accept my answers or argues with me.  He has it in his mindset that he can make his own rules.  He doesn't think before he does things, also a common AS symptom and disruptive to my OCD ways.  He'll get on his bike and head to a neighbor kids house before he would ask permission or even say, "I'm getting on my bike and going to so-and-so's house."  This goes back to the social insensitivity to others. This has happened several times when he's gone out to play in the backyard and I peek out the window to check on him and he's not there.  I go out and call for him but there's no answer and see the open gate and know he's wandering the neighborhood.  I have gone into a panic not knowing where he is because it's difficult for me to drag Emi all over the neighborhood looking for him.  It's scary and I don't wish this for anyone.

OK, I could probably write pages and pages about this so I need to save some for later as the OCD me tries to deal with understanding and learning to deal with Eriks and AS.  Besides what I've read about AS, I have no clue as to how to be a parent to a child with AS.  Someone recommended a book to me written by another mother of a child with AS.  I need to get my hands on it.

It's going to be a long journey for us as we learn how to deal with Eriks' behaviors and I hope that those who know him will begin to understand him better now that the news is out in the open.


  1. Sorry to hear about Eriks diagnosis. It must have been hard to come to terms with. I've worked a lot with AS/Asperger's children in mainstream school over the years and I would say it is good you have his diagnosis now, as puberty and the less structured environment in high school (with multiple classes and teachers) can bring its own problems. At least with the dianosis now you will be better able to help him transition.

    I've never heard of being able to outgrow Aspergers though. I find it strange your doctor indicated this. As a pervasive development disorder (PDD) it is basically a life long condition. However I do know - and have seen - that with a good program of integrated treatments many can manage their condition. You can see teens who can talk very well on what it means to them to have Aspergers, what is difficult because of this, what they find are the benefits of it (great focus and concentration for example) and so on. Also, because Eriks is smart, he will be able to learn (and practise) appropriate social responses. Even if he doesn't always get it right he will be able to improve, especially if he is motivated himself to. Knowing what are sensitivities for him and make it hard for him to focus on the outside world will be a big help for his school (I remember teaching one boy who couldn't do a thing if there was bright yellow around him!)

    All the best. It must have been a real body blow to get this news and what it means for your family. Hugs.

  2. Liene...your hands are full but your heart is fuller. I don't have the words right now, I need to process everything you are all going through.
    Sending hugs,

  3. Good for you for seeking a diagnosis, which can only lead to more help for him and you. I find this is such a common diagnosis these days, I would think there would be plenty of literature and maybe even groups out there to join. I bet once you dig a bit deeper, you'll find you don't have to feel so alone.
    Nothing in life is static or permanent- so now you can ask yourself why God sent your OCD self an AS kid... :) Maybe there is room for growth all around! Wishing you all the best!

  4. We talked about his diagnosis before you moved away, and I've been wondering how you have been doing with all of this. I'm glad he is getting the help he needs. It sounds like you have your hands full, but you are a great mama and I know you will both get through this. Thinking of you!


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