“From Changing Him to Changing Us” – Introduction

In September of 1996, my wife gave birth to a 9.2 oz baby boy. In ways, the welcomed entry of our son brought some delightful surprises. Six years had passed between the birth of our daughter, so the mere fact that he was born was a surprise (we didn’t think we could / would have any more children). And, I had thought we would have another girl – I’m not sure why. The sonograms were inconclusive, and I assumed our daughter would have a little sister. I recall being very surprised when Christian came into the world and the nurse proclaimed – “What a tank!” which amused me given he was such a tiny thing.

He was perfect. Even as a baby he was beautiful. This is when my vision of what he would become began to form. I imagined him being this tall, strapping boy running through our home as a teenager with a trail of friends, bringing a prom date home for photos – all the popular things. I imagined him going beyond where I had left off as a track and field sprinter (I ran in NCAA collegiate track meets until I was 44 years old and was consistently ranked among the top sprinters internationally in my age group – Master’s Track and Field). However, I had never reached the ranks of a “world-class” sprinter (never came close, really). I had a hunch this little man newly minted into the world had the physical attributes to reach that level – with some early training, of course. To that end, I recall tying a rubber surgical tube around his waist and “towing” him (I think he was 4 or 5 years old at the time) as part of “overspeed” drills to train his neuromuscular system to fire more rapidly, such were the depths of my delusion. I’m sure neighbors in Plano Texas looked out their front windows shaking their heads: “What in the world is he doing, dragging that child around.”  And to top things off, he would be smart, which is sort of a given if you are projecting what your child will become – a better version of yourself.

Almost any person who saw him for the first time would comment on what a beautiful child he was. I played it cool, but this attention only enhanced the vision of the person he was to become.

There were a few flat notes however – instances in which well-meaning people tugged at the tapestry threads of the image that had formed in my mind. A friend commented to Jennifer that Christian didn’t seem to be meeting all of his “milestones.” “Milestones!” I exclaimed. “Whose milestones?” “Her milestones?” Jennifer saw things more objectively. She noted how he didn’t “play” with toys – that is, he didn’t understand, or didn’t seem interested in their intended use. Instead, he was more interested in how the toys were shaped. When Jennifer would try to make faces at him as he was lying on the floor – to interact and connect with him – he was more interested in the spinning ceiling fan overhead, which he would watch for long periods of time.

A more obvious sign was Christian’s speech delay. At two to three years of age he wasn’t talking. His speech sounded something like: “Jibber, jibber, jibber (comprehensible word), jibber, jibber…” Many years later it would occur to me that this may have been what he was hearing. I learned, again much later, that individuals with autism take in vast amounts of data and sensory input indiscriminately, so he may have been besieged by a torrent of noise and out of that was picking out individual words here and there.

By the age of three, his language was still delayed. As part of the “No Child Left Behind” program then Governor Bush had implemented, Christian qualified for speech therapy. I was still not overly concerned. Boys often develop language more slowly than girls. I thought this was likely related to his inherent “boyishness. His grandfather (my wife’s father) as a college student had essentially tested out of a master’s degree in physics and graduated with a PhD in Chemical Engineering. He hadn’t spoken a single word until he was four years old, at which point he began speaking in complete sentences. So, the speech delay was probably further evidence of his brilliance. By the way, I do believe Christian inherited the keen scientific, highly analytical mind of his grandfather, which carried with it a distinct social awkwardness.

The first real signal I took seriously was when his speech therapist told Jennifer that there may be something a speech delay alone didn’t fully account for and mentioned the word autism. I was defensive, but this was a person with significant experience working with all types of children with disabilities, which is a word I abhor. Nonetheless, I had to take her assessment seriously. This is when the worry began in earnest.

Not too long after (when Christian was four) I came home from work and my wife told me she had taken Christian for his health check-up with the physician’s assistant of his pediatrician. As sometimes happened, Christian had a “meltdown” in the doctor’s office. The physician’s assistant exclaimed: “This child has autism.”

When Jennifer related this to me later in the day, I was furious. I paced around the house – head down: “How dare she make a snap diagnosis of our son!” “Who is she to make that determination within the space of a 15-minute office visit!” Really, what I was furious about was she had found the one thread that began to unravel the identity of our son – the identity I had imposed on him, at least.

This was in the year 2000. Autism was an enigma – a frightening, stigmatizing word. I knew something close to nothing about it. The only picture I had of autism came from the movie Rain Man. An inspiring movie for sure, but nothing I associated with my son. Ultimately, we would create a similar profound connection between us and our son, that Raymond and Charlie Babbitt experienced in the movie, but at the time I recoiled to think about it. Even though Christian was just a child I recognized a difference between Raymond Babbitt (an adult) and our son. This introduced a frightening question mark that would fill our minds for years to come: “What does the future hold for him?” “What will his life be like when he’s an adult?” “Is it possible he will somehow grow out of this?”

I researched, but there were only a handful of adults who were known to have autism and who led normal adult lives – Temple Grandin and Daryl Hannah (surprisingly). Many surmised geniuses such as Bill Gates, Albert Einstein, Thomas Edison, Sir Isaac Newton were autistic, but it was unclear, and not enough to remove the huge question mark about Christian’s future from our minds.

A Buddhist sage once said: “When the student is ready, the teacher will appear.” Nothing prepares the pupil more than pain. I was ready to learn.

Over time, my son would reshape my perspective. He would guide me toward a worldview that resonated deeply with my instincts, but it required a maturity I had not yet reached – it challenged me to abandon convention, to commit to a fresh and dare I say enlighten way of thinking. Ultimately, it gave me a sense of liberation and independent thought I cherish above almost anything else in life.

To be clear, our love was never diminished. It was, and is, unquestionable, immoveable, and profound, but with this love as a backdrop, we had one watchful eye focused on “fixing” him. It was all with the best of intention; it was for the sake of his future well-being and his success, which admittedly was partly informed by the surrogate vision of intergenerational success I have mentioned. As you will see, this parental focus to fix has faded over time. What has been fixed, is our way of thinking.

Christian is now 28 years old. He has brilliantly answered many of the questions that haunted us earlier in his life. We now know what he looks like as a young adult.

Who he is now is far better than the simplistic, unrealistic vision I had of him when he was a small child – a much more complex and complicated version.

He is very kindhearted – also quite solitary. He spends most of his time by himself, in his head, which isn’t far from me. I love my alone time and will spend days on end in a foreign country on a cycling trip by myself, talking only occasionally with a waiter or shop keeper – so I get this solitude; I’m “Perfectly Lonely,” as John Meyer suggests. Christian’s analytical mind pierces through conversations and at times can come across as blunt. But he has learned to manage this for the most part, in the limited conversations people have with him, he is very friendly and cordial. He is still very good looking, though he doesn’t seem to notice or care.

What is truly a surprise are his pronounced strengths. We’ve come to realize that you will almost always find what you’re looking for. If you see weakness, you will find weakness, and weakness will grow and amplify as a result. If you see strength, you will find strength (though it might be different from what you originally imagined). When you see strength, strength will likewise grow and amplify.

Below is a photo of Christian proudly showing his acceptance letter into the University of Colorado at Denver’s mechanical engineering program. He is exceptionally smart (gifted even). He is fascinated by renewable energy. He has an amazing, innovative mind, and is continually working on experiments that usually involve converting one energy form to another using vacuum cleaners, pressure cookers, circuit boards… Thrift stores are Christian’s friend. And, he has proven that he can have a full-time job (he took a few years off from school to make vehicle airbags in an airbag manufacturing plant and was a top performer).

Our biggest question and general uncertainty was whether or not he could live independently, again, firmly believing the key to living independently is having a sustainable career. There is no question. After he is finished with his mechanical engineering degree, we have every confidence he will get a job, buy a house (hopefully close to our home) and live independently.

When I asked Christian if he would be willing to share his remembrances, perspective, and realizations in this book – because it could provide inspiration to other families – he hesitated and said: “I’m not perfect.” I assured him there is no such thing, and nothing even close to such a thing. That is the point of this book. He agreed to contribute his thoughts.

I share this not to brag – though we are very proud of him – but to give hope to parents of young children with autism. I see many parents of young children with autism, and I feel their worry, their pain, their exhaustion, and their exasperation. Hopefully I can share some experienced and observations that will be helpful.

This book is divided into developmental phases with each chapter containing transformational milestones – both Christian’s and ours – along with the realizations and insights we all three experienced along the way. Because it is our core belief that having a career is a key, if not the key, to having an independent adulthood, I will include specific callouts that tie signature traits of autism (strengths, non-strengths, and considerations) to career prospects and outcomes, and I will provide ideas for preparing young people with autism for a career.

Final note: I know very well that every family impacted by autism goes through a profound, transformative, and beautiful journey; we’re certainly no unique in this regard. I would love to hear the experiences and perspectives of anyone reading this who cares to share.