Understanding Asperger’s

[ 8 ] Comments

by RI Editors

Today’s guest essay in our Peculiar Minds series is by Kathy Ward.

When Ryan was 2 he loved toy cars. We collected them from garage sales and thrift stores. He had maybe 30. He would spend hours lining them up, making sure they were even and that the line had a nice sinuous curve. That is all, he didn’t make vroom noises, crash them, or drive them in any way, just line them up.  If you messed with the line he would lose it, screaming and crying until all was back to the way it was supposed to be.

Asperger's postWe have spent the last 14 years trying to help Ryan understand how to deal with people messing with his lines. When he was seven we moved from Las Vegas, Nevada to a very small town in Utah. It was a traumatic moment for him. We tried to prepare him; we talked about it incessantly, stressing how wonderful everything would be in this new place.  The day we left, I took him by the school so he could say goodbye to his friends. He gave a speech to his first grade classmates, bequeathing the lead of his gang over to another boy and encouraging the others to remember him and treat each other well. He could have been a CEO giving a retirement speech. He seemed to do well with the move until school started. He was disruptive, loud, got into fights, and was disrespectful and mean to the other children. I got to know the principal very well, very quickly. Both his teacher and principal suggested I get him evaluated when the state children’s clinic came to our town again in a few weeks.

Ryan was diagnosed with Asperger’s Syndrome, a pervasive developmental disorder, that is on the upper end of the Autism spectrum. We had been suspicious of autism of some kind since before the cars, but living in Las Vegas, which had the second largest and fastest growing school district in the years we were there, made us unwilling to find out for sure. We did not want him labeled and pigeon-holed before he even had a chance. We worked with his teachers and explained his quirks and things went mostly OK. Until the move.

Children with Asperger’s hate change. Not like most of us, who are comfortable and don’t like our routines being messed with, they HATE it. Change means the world is not as it should be. Serious changes, like moving, destroy the universe and leave the child with a jigsaw puzzle of a life. Ryan was not disrespectful because he was playing power games. He did not start fights because he was a bully. He was trying to regain control and make everything follow the rules again. If the teacher missed a child committing some sort of offense, he caught it. If another child didn’t play the games right, he wanted to fix it.  The misbehavior was his attempt to make everything fit into his mental mold of a proper life.

We learned about the other things (not symptoms, he was and is not ill) that go with Asperger’s. He gets obsessed with things: computer games, fish, military ranks, and order. He is very uncoordinated, with bad balance and a lack of proprioception (the sense of the relative position of parts of his body). He sees objects before people and wants people to behave rationally, like objects. He desperately wants to have friends and be surrounded by people who love him. He does this by talking loudly about the things that interest him and expressing his thoughts as soon as they pop into his mind. He relates well to adults and to children younger than himself, but has difficulty with his peers. He hates loud noises, comedy based on humiliation, and odd food textures. He is blindingly intelligent.

He has also learned that people, especially his siblings, are not objects and will not follow his internal script. He understands that he needs to choose the time and place to talk. He thinks about social cues and tries to work out what is the right thing to do.

We are blessed. Our firstborn has Asperger’s.

He has led our family to focus on how we treat each other. We talk openly about noticing others. We don’t take any social situation for granted. Everything is fair game to talk about and explore. We share how we feel so that others can understand us. We explain the whys and wherefores of decisions, because understanding is important. We discuss star formation and Percy Jackson at the dinner table.

Ryan’s little sister Ellie is in 5th grade. She struggles with peer interactions, understanding what others want of her. She has proprioception and sensory issues. She worries about everything and needs her world to be just so. She does not have a formal diagnosis, but we see who she is and worry.  A girl with Asperger’s presents differently, progresses differently. But the blessings will still be there for us as well.

I am confident in my children’s futures. I wasn’t always. But I have seen the progress they have made. I have seen the blessings come to them and our family as a whole. The Asperger’s is a part of them and to take it away would make them less. They have amazing gifts of focus and insight that come from not being in the center. As they learn to use their gifts and overcome their weaknesses they become more and more incredible every day.

Kathy and David WardKathy Ward runs a small circus in San Antonio, Texas. Her six acts alternate growing too quickly and perfecting new tricks. When not managing chaos Kathy reads several books at once, wanders aimlessly around the city and avoids housework. She also likes cross-stitch and naps. She blogs at www.alibraryforme.blogspot.com when she can remember.

 

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8 Responses to Understanding Asperger’s

  1. Bonnie says:

    My sweet and wonderful nephew may deal with Asperger’s and his mother has been great to educate us about the challenges but also the blessings. It’s a difficult identification (not diagnosis) because by some criteria he fits, and by others he doesn’t. He experiences the world in a different way from other children, and has brought wonderful perspective. What a gift of a child he is! But it’s hard for others to understand his quirks and uniqueness, and the challenge does make life different for his parents and for him. What an opportunity to embrace seeing the world differently! He is such a blessing and his mother has inspired me to enlarge my views, to try harder myself rather than expecting the world to fit my preconceived notions. Thank you for telling this story with your great faith and perspective.

  2. jendoop says:

    Your post, and your life, is an example to me Kathy. I hope to one day have the perspective that you do in relation to my children’s difficulties. What a hopeful post, thank you.

  3. MSKeller says:

    I know no one (officially) with Aspergers, but I suspect some either are, and it isn’t public knowledge or they themselves do not know. I so appreciate you sharing your experiences and the sweetness that can come with, as you say, ‘those who aren’t in the center’.

    M

  4. Becky L. Rose says:

    Here is a resource for you all. This web sight has a lot of activities and games to play with kids on the autism spectrum. A lot of it is free and there is some for purchase. I use this stuff with kids who have anger/communication problems. http://autismteachingstrategies.com/

    Because of working with this diagnosis I can spot them right off. Have you read the articles in the Ensign about this topic. There are just a few. Meridian Magazine also had someone write about his experiences as a married adult with aspergers. It was a few years ago, but if you search I’m sure you can find it.

  5. readermom says:

    My husband has an Asperger’s spotting habit. I think sometimes it is too easy. So many of us don’t fit the “norm” Asperger’s kids just have a very specific way they don’t fit. Though I have often been grateful for the descriptive nature of Ryan’s diagnosis. It helps us know what is going on in his head. So many don’t have that rough guide.

  6. teelea says:

    Becky–I am the person who wrote the Meridian article. To be honest, I wrote it largely because when I was diagnosed six years ago, I realized that certain elements of AS have some implications for aspects of church activity (missions, participation in activities, struggles with attending church, not fitting in, etc.). I went looking for information written from an LDS perspective, and found virtually nothing. So I decided to write the kind of article I wish I had been able to find, hoping that it would help somebody feel less alone, as well as helping to get a conversation going.

    Thankfully, things have changed a lot in the five years since I wrote that article. There is a very robust conversation going, and while there is still much to be done, I have found that in the church there is a growing awareness and acceptance of AS and similar conditions. Also in the last five years, some families with autistic/AS children have moved into our ward, so that our family (with autistic teenagers, one AS and the other low-functioning) doesn’t feel so alone any more. We have been able to provide a great deal of support for each other. Thanks for adding to the conversation.

    And incidentally, anybody with autistic children, or who is on the spectrum themselves, will find that the books published by Jessica Kingsley Publishers (www.jkp.com) to be a fantastic help. They publish self-help type books that address a huge variety of issues related to autism AS. It’s very much worth checking out.

  7. Kate says:

    Although I’ve been following Real Intent for a while, the timing of this discussion on mental health and subsequently Asperger’s Syndrome in particular sent a ping through my spine when I first saw it. Our only son, Ben (6), was formally diagnosed with Asperger’s Syndrome just recently.

    My husband and I went in recently to go over the findings of all of the diagnostic testing which was done on Ben a few months back. This most recent process of evaluation confirmed that Ben has Asperger’s Syndrome. I trust these professionals. I prayerfully researched long and hard to find professionals which had the certification and the experience which I felt I could trust. These people were wonderful with Ben and very nurturing. We went over the results from the testing for about an hour and a half and received a long, detailed report of the findings. The report itself is similar to previous reports that we’ve received following the many evaluations which have been done on Ben, but the conference, discussion, and recommendations far exceeded any experience with any public services we’ve used thus far. I don’t share that to discourage anyone from seeking public services. There are wonderful, dedicated people who work in the public sector. I throw it out there in case anyone who reads this may need encouragement if they feel that needs are not being met adequately through a school or any other public services system. There are many options available for help, including those in the private sector.

    Ben has been evaluated many times before and received diagnoses of gross motor, fine motor, and speech delays when we was 16 months old through ECI (Early Childhood Intervention), and then Autism Spectrum Disorder when he was 3 years old after being evaluated through our local school district. The experience with the school district during the diagnostic process in 2009 was abysmal, in short. I wasn’t sure what to make of the diagnosis at first because of the less-than-impressive experience from our interactions with the school and also because autism hadn’t crossed my mind as a concern in such a long time, but I definitely felt that their recommendations regarding Ben were not to be followed. I have tried to consistently listen to the Spirit in our decisions regarding courses of action for Ben. So far, I have no regrets about the decision to forego public services when he was 3. We did use the services a year and a half later when he was 4. I am pro do-what’s-best-for-your-family-and-listen-to-the-Spirit.

    As far as treatment, we’ve done occupational therapy, speech therapy, social skills group therapy, nutrition/diet/supplemental therapy, ABA (Applied Behavior Analysis) therapy, acupressure therapy, massage therapy (sometimes with essential oils), and chiropractic care. I’ve found that effective therapists (usually ones with years of experience) don’t focus on the diagnosis and they don’t think in a static way. They observe the needs and treat the need. That, in my experience, requires dynamic approaches. When I do that too, things go better.

    Ben wants so desperately to be social and make friends, but he doesn’t recognize (and therefore respond to) subtle social cues and body language. He treats people more like objects than individuals with feelings and gets unreasonably upset when things don’t go his way. This results in peer avoidance and rejection. That breaks my heart over and over. He has gone through phases of intense obsessions with things like Thomas the Train, toy cars, Star Wars action figures, and garbage trucks. He can go on and on about the solar system and the milky way or the fall of the Roman Empire and not recognize at all that no one is interested in what he’s saying. He interacts better with adults because they’re usually more patient and nurturing than his elementary aged peers.

    I’m always reading and searching for things that may help. I do not look at Ben’s autism as something which is a part of him and which we as a family need to accept. To me, that’s like saying that someone who has cancer needs to accept their cancer as a part of who they are and grow to love it. I love Ben, not the autism. I can find joy in the rich, everyday experiences of life with the autism included and be happy in the moment without accepting the autism as his static condition. I’m not sure if that makes sense, but that’s how I feel. We as mortals deal with depression, bi-polar disorder, excessive insecurity, stubborn pride, fear of the unknown, fear of what other people think, etc., while in mortality. I think that autism, especially in it’s higher-functioning forms, may be another one of those infirmities that we have to work to live functionally with and even overcome while in mortality. Whether we overcome it while here or not, our efforts and sacrifice will sanctify us and those blessings will be worth it. Those are my thoughts.

    I love my son and I love the Lord. I see His works in my life, especially as I actively seek to improve our lives.

  8. misssrobin says:

    Thank you for sharing your son’s/family’s story. Thank you for telling us about all the blessings and gifts that come with the challenges. I’m glad we live in a time when people are finally start to see mental health issues differently. When we are seeing those struggling with mental health issues as people of value who aren’t wrong but simply different. I love the way you explain how they experience the world differently. So well said. My husband has moderate to severe OCD and has some similar struggles. Understanding that we see the world differently has helped so much.

    Thanks again for sharing your story.

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