“If a man does not keep pace with his companions, perhaps it is because he hears the beat of a different drummer. Let him step to the music which he hears, however measured or far away.”
- Henry David Thoreau
- Henry David Thoreau
In April 2010, our oldest son (by one minute), Benjamin, was diagnosed with mild/moderate autism. He was three-years-old. In February 2012, his twin, Jackson, was diagnosed as well, under the new manual just as ASD. His autism presents much more like Asperger’s Syndrome. The boys had developed typically, more or less, for the first two years of their lives and they have what is referred to as regressive autism.
Benjamin’s Diagnosis
We first noticed some differences in Ben around age 30 months. We had just made another out of state move and things were...crazy. My husband and I had uprooted our twins along with a newborn from Michigan to Alabama where we knew just about no one. I was without help and the days were long. I say all this to say his autism was easy to miss at first.
The twins were our first children – we didn’t know any better. Ben was just Ben; he loved Blue’s Clues and carried a notebook and crayon everywhere he went, sometimes staying up until 11 p.m. quietly drawing. We couldn’t leave home without his blankie. He adored his blue sippy cup. Typical kid stuff, we thought, just a little intense.
As for language, we noticed both twins were a little delayed compared to their peers but they were twins and they were boys so we wrote that off as typical, as well. We were encouraged by a friend of ours who is a speech therapist to just get them tested at the local school when they turned three if we didn’t see a big improvement.
Our first real “red flag” was when I noticed Benjamin start to fall to the background of our home. When I was playing with the other boys, he always seemed to be off in the distance. I can see now he was experiencing sensory overload. His brothers have very dominant personalities and I thought he just needed some away time. I told myself it was surely nothing to be alarmed by.
Then he stopped responding to his name.
“Maybe it’s his hearing.” My mother offered over the phone one day.
So we took him to an ENT and he told us Ben needed tubes in his ears. We decided that, for sure, if we didn’t see improvement after that, we’d get him tested for speech delays when he turned three.
Then instead of using words (like he previously had) to ask for a drink or a snack, he would stand at the refrigerator and scream, tears streaming down his face as if he’d lost something.
Then a Sunday school teacher asked if Ben enjoyed playing with other children and mentioned that he always pulled away when approached by his peers.
Finally one night, my husband mentioned a word that had never even crossed my mind: autism.
When he brought it up, I was baffled. I had one experience with autism in my whole life; when I was 15, I worked at a bookstore. One day a man came in asking for a John Wayne book. He had a big smile on his face when he said, “it’s for my nephew; he has autism.”
My conclusion, of course, was that people with autism must love John Wayne.
I had never even seen Rain Man. All I knew is that Jenny McCarthy had been ranting about the topic and I had to look on WebMD to know what it even was.
Then all of a sudden we had answers. For every general behavior I had a specific example.
By the end of those six months, when it was time to request testing for speech, we had decided to request autism testing, as well.
He was tested, met the criteria, and started school in April.
Ben had autism.
Jackson’s Diagnosis
When we initially took Ben to be tested at the school, we took Jackson as well. He came back typical with no diagnosis, or as the schools put it, he did not qualify for services.
The more I learned about autism though, the more I saw things in Jackson and could look back and find traits as well in the early years. Lining up cars. The rigidness when plans changed. Certain sensory problems.
So the next year, I took Jackson back to be tested again. Same result.
The following year I learned even more and my husband and I were convinced Jackson was on the higher end of the spectrum, showing very typical signs of Asperger’s Syndrome.
Because he is a twin, many people brushed it off saying he was learning behaviors from Ben yet two things about that didn’t feel right...
1. Our younger son was not showing these behaviors
2. Jackson’s autistic behaviors looked different than Ben’s. Some of the challenges he had, Ben didn’t and vice versa.
3. Jackson doesn't mimic...anyone
We finally got Jackson into a sibling study at Vanderbilt University where the doctors told us without hesitation, yes, he met the criteria for ASD. It was just days before his 5th birthday.
We felt relatively prepared for Jackson’s diagnosis because we had suspected it and were already an “autism-friendly” home but it was still difficult emotionally...multiples on the spectrum.
That meant multiple meltdowns. Multiple therapies. And the most difficult part - understanding how to meet the needs of each instead of trying to take a blanket approach to things.
