August 19, 2017

My Son has High-Functioning Autism

autismBy Katie Guldbech

My son was diagnosed with High-Functioning Autism in May 2009, one month shy of his 5th birthday.  We never suspected that he might be on the Autism Spectrum.  Honestly, my husband and I didn’t really know what the Autism Spectrum was.  Our only clue of what Autism might be was from the movie “Rain Man”.  You have to admit, Dustin Hoffman did a great job portraying an autistic adult!

We never suspected that anything could be (for lack of a better term, although it is a word I hate to use) wrong with him.  He was born a healthy six pounds, ten ounces, on June 10, 2004, three days shy of his due date.  He was alert from the minute he was born.  When we were in the hospital room, my mom was sitting by a window holding him, and he was so attracted to the light that it really looked like he was looking out the window. 

In his first few years of life, he was meeting all of his milestones.  He rolled over before he was five months, sat up at six months, crawled by seven months, and took his first steps on his first birthday.  He got into mischief like kids do.  He managed to find a penny underneath the couch, just within his reach, and swallowed it before I could grab it.  When I called the advice nurse, she told me to watch for it to pass in his diaper.  After two days of barely being able to eat because he could not swallow, I took him to the pediatrician.  An x-ray was done, and we found that the penny had been lodged in his esophagus.  He ended up having to go under anesthesia to remove the penny from his esophagus on his first birthday.

After that, things seemed relatively “normal” (another word I hate to use).  He took his first steps two weeks after the penny incident.  By 18 months, he was using a few words, and even said his first swear word.  After pooping in the bathtub, he looked down and said “s***”.  Talk about an appropriate use of the word!

Right after he turned two, we found out we were expecting again, this time with my daughter Gracie.  Matthew did start to show some behavior problems, but we related this to the “terrible twos”. 

But by the time he turned three, we did start to have some concerns.  His speech was not progressing the way it should, and he was not talking like a “normal” three year old. At this point, we talked to his pediatrician, who told us that speech issues get turned over to the school district after three years of age. 

I then contacted San Juan Unified School District and got Matthew into a preschool for speech delayed kids.  His teacher was wonderful, and he instantly took to being in school.  During the two years he was with her, she did notice some social skills, though.  He would just play “side-by-side” with the other kids, but no real social interaction.

After we started preschool, my in-laws brought the term Asperger’s to my attention.  My mother in law was a nursing student at the time, and had read symptoms in her books that sounded similar to Matthew.  We did some reading and research on our own, and decided to pursue it.  We had a change in insurance at this time.  We contacted the new pediatrician, expressed our concerns, and he put in a referral to the UC Davis MIND Institute.  We were told that the referral could take a while to process, because of so many referrals ahead of ours.  So we went on living our lives, waiting to receive approval of the referral.

During the time that we were waiting, I went through a denial phase, and felt he was improving in speech and behavior, so I asked the doctor to withdraw the referral (a decision I regret).  However, the doctor did help us set up an appointment with a pediatric neurologist. 

We saw the neurologist, and the referral was put back in for the UC Davis MIND Institute, but the doctor didn’t say anything about Autism or Asperger’s.  The doctor just said PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified).  I actually felt relief when I heard this, thinking that Autism was no longer a worry.

We finally got our appointment with the MIND Institute, and went in on May 12, 2009.  After approximately four hours of testing, cognitive tests, Matthew and I took a lunch break while the doctors and therapists went over the testing results.  After lunch, Matthew went back to play, and the doctors sat with me and told me the words I never thought I would hear.  “Matthew has Autism, High-Functioning Autism”.  I admit, I was at a loss for words.  I went home and gave my husband the news.  As any parent would do in this type of situation, he immediately wondered if there was something he could have done differently to have prevented this diagnosis.  We both had thoughts like this, but the fact was, there was nothing we could have done.  He was still the same beautiful little boy we had brought into this world, but we had to accept that he would be learning how to live life in a different way. 

I admit, I let myself wallow that night, but the next morning, I got on my computer and started looking for answers.  I needed to know what I could do to help my son. 

After giving our diagnosis, the doctors and therapists at UC Davis gave our names to Alta California Regional Center, who put us in touch with an agency that works with autistic children.  They provide services in the home, working on the unpredictable behavior patterns of Autism, and also teaching life skills for kids to be successful in the future.  Matthew has been receiving these services for approximately three years, and has been progressing so well.  His speech has greatly improved, and he has a yearning to learn new things.  He fights with his sister, just like other siblings do. 

When someone hears that your child has Autism, the first thing they feel is pity.  Although there have been some difficult times, I would not change his diagnosis for the world.  I have grown and changed and have become a better person because of everything my son and his diagnosis have taught me.  Someone once asked me, if I lived in a perfect world, what would that world be like? The one thing I would not change, if there was such a thing as a “perfect world”, is the Autism. 

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Comments

  1. Hi Katie,
    Thank you for your openness and honesty about an uncomfortable subject. My son is almost 22 y.o. and, looking back, I wonder if he would have had an extra label as well. He was always outside the box – crawled at 5 months, ran at 10, and rode a two-wheeler (w training wheels) by 24. He moved constantly – exploring, investigating, and learning. It was like his brain was on fire for knowledge. I was exhausted! Thankfully, I happened across bios of Jefferson, Edison, and Einstein. As young boys, they exhausted their mothers as well so I figured he fit their mold, so to speak, and I made it my mission to respond to how he operated and make our house fit “his world”. Over the years, I sought out open-ended toys, introduced him to real tools, and gave him space to build in the yard. In short, he was a happy kid that was intensive to raise. Along the way, he built a loft for his room in 7th grade, designed and built metal-framed furniture (a BMW backseat became a small couch) and replaced a car’s wiring harnness as a teen. He was recently diagnosed with ADD and I laugh because his extreme creativity and curiousity is their ADD. Yes, he did have difficulties along the way (what kid doesn’t?) and I do wonder if knowing he had any other label would have been helpful. I wanted to share his story to encourage you to know your son and respond to him for who he is with the label as a window of insight rather than a tent of definition. I’ve wondered over the years if Einstein, Jefferson and Edison were alive today if they would have any extra labels as well.

    Jane

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