The harsh awakening of an Autism diagnosis

I don’t remember hearing the word “autism” while growing up in the late 80s, early 90s. Autism it’s not something you would pay any attention unless you are either an autistic person yourself or someone close to you is.

When I was dating my now wife, I remember we used to jokingly refer to her nieces and nephews as “the autistics” because at any family gathering they would be completely abstracted away in their phones. Little did we know about the actual autistic world at that point.

Fast forward some years and we are happily married. We are expecting our first child and the truth is, we thought everything would just click in place. We both are professional individuals with successful careers and a good combined income. We imagined our kid would have the world to explore and a bright future ahead of him. Life was good.

Something’s not quite right

The first year was uneventful, which is good in this context. Around the 18-month mark my wife starts to worry he’s not saying any words yet. I brush it aside and say it’s completely normal for some kids to be late talkers and we figure that eventually he would pick it up and everything would be just fine.

2 years and still no words. We keep hearing from family and friends that kids can start talking as late as 3 or 4 years in some cases but is still within normal parameters. We are not so sure but we are hesitant about looking into it a little bit deeper. We keep telling ourselves everything will be fine.

A harsh awakening

I vividly remember being away on a business trip with my then boss and some client. We were mostly done for the day and I was getting ready to go to bed, was texting my wife but noticed she was not very talkative. I will never forget the bomb she dropped that night: I think Oliver is autistic.

My wife is a pediatrician. I write software for a living, my knowledge about the medical world and anything health-related is next to non-existent so I completely rely on her for anything else. She was battling this suspicion for a while and I guess at that point she had put two and two together and could no longer keep pretending everything was fine.

That was December 7, 2021 — I will never forget the date. I tried to calm her and was thinking to myself what does that even mean? What is autism? What does it mean and what impact will it have in my son? Did we do something wrong? Did we caused it?

For the same reasons that you should probably not watch a movie about a plane crash the day before you are about to board a plane, it is a very bad idea to read about severe cases of autism when you are suspecting someone close to you has it.

At that point I started consuming everything I could get my hands on regarding autism. You will find some stories about extraordinary people with autism who were capable of overcoming the odds and achieve great things, but you will also find very difficult stories about the most severe cases of it and those are the ones that will crush your soul. We didn’t have a diagnosis nor were really aware of the extent of our son’s autism, so it’s a very dark time to revisit personally.

We started noticing things that were happening right in front of our eyes that we were not aware were very common traits among autistic individuals such as tip-toe walking, lack of eye contact, not responding to his name and of course, lack of verbal communication just to name a few. We developed an obsession to go back on videos from the previous 2 years and we realized it was there all along. As a parent you start to blame yourself for not catching it earlier and you start developing guilt.

I hate to say it but it was at this point that I realized nothing of what we imagined our life would be was ever going to be a reality.

The search for a diagnosis

At this point we were still living in Guatemala City. Not knowing where to start we got ahold of a sensory therapist that has experience with kids on the spectrum as well with kids with sensory processing disorders. She was very assuring and told us that this was increasingly common among kids, specially after post-covid confinement. She suggested we waited 6 more months before trying to do an autism diagnosis on him as she thought he was simply a case of sensory processing disorder.

We were initially relieved but that feeling didn’t last long. We felt we needed to do more and after about a week we were again back at square one and decided we were not going to wait. We immediately resumed our search and found an organization near us that of offered basic services for autism. We quickly learned one of the sad realities of autism: waiting lists.

One of the most frustrating aspects of autism is learning that intervention needs to happen as soon as possible if you want to have a chance at the best outcome, but you are usually faced with the reality that most places are barely getting able to meet demand. Waiting lists can be months, even years long.

We enlisted our son in late December 2021 and were able to get the diagnosis going around mid February of 2022. We received the formal diagnosis on late February. As expected, it confirmed that our son had autism level 2. It was described to us as mild but the reality is that it felt like a death sentence to us. I remember my wife crying during the session, it was an inflection point on our lives.

The grief period

We didn’t know we were headed for a grief period after getting a diagnosis. It was good to finally put a name to what we were facing but what followed was the realization that our lives were unequivocally altered permanently. Seeing your son under a different light was and still is from time to time a hard pill to swallow.

You start to get bitter and angry with the world. You resent seeing others with completely neurotypical kids achieving milestones and leading a normal life. There’s an expression being thrown around autism circles that I quickly adopted: comparison is the thief of joy.

It’s been two years since the diagnosis and for the most part we are over the grief. I will not lie though, every once in a while it will come back but it will not be as strong as in the early days fortunately. It becomes something you get used to as with everything in life, for better and for worse.

The new reality

In a matter of three months our life changed completely. It sure didn’t felt like three months, more like three years. At the beginning of March 2022 we were finally able to start the intervention for our son. For those just starting this journey, intervention in our context was ABA therapy.

I’m aware of the controversies and heated arguments that ABA therapy usually is associated with, so I’m not going to turn this into an argument in favor of or try to convince anyone about its benefits. We decided the best course of action for us was ABA.

Oliver was about to turn 3 when he started his journey. He would do 9 hours of therapy per week initially, and we gradually increased it to 12, 15 and finally 20 hours per week. One of the most challenging skills to develop as a parent of an autistic kid is patience, lots and lots of patience. We were told this journey is for life and yet here we were waiting to see some result after a few weeks, anything really to give us any glimpse of hope.

Around two months after therapy started we noticed he was doing great progress towards keeping eye contact and around three months he started pointing at things he wanted. We were elated to say the least. Those small victories, as trivial as they might seem to anyone with a neurotypical kid will tell you are huge wins for kids on the spectrum. That was the indicator that we were gaining momentum and we were in the right track.

A change of environment

At the same time all of this was happening, I was also dealing with big changes in my professional environment. Many years before we even had Oliver we were on track to relocate to the US through my employer. Covid and Oliver happened pretty much at the same time and that put things on hold for a couple of years but just as we were getting ready to do the big move the autism diagnosis came along.

It was during this time that I had to make one of the hardest decisions of my life and chose to leave a job I loved with people that felt like family to one that would allow me to provide my son with better treatment options and insurance to cover for it. My decision unfortunately was not met with empathy and was told that I only used and discarded them. To this day I still think of it and wish I handled this differently but in the end I always have to remind myself that my son’s future is on the line here and will always put him first.

Once I had access to the medical insurance coverage my son needed, we were able to get in (you guessed it) a waiting list for services in the US. It took 6 months before we were ready to receive services but finally on June 2023 Oliver was able to resume ABA therapies.

Was it worth it?

Oliver is 4 and a half years old and receives 30 hours per week of therapy, in addition to attending pre-K once a week. This kid works more hours than a lot of adults I know!

To answer the question, it is probably too early to say and I’m sure anyone with autistic teens or even adults will have a better outlook but so far I will say it has been worth it. I don’t know what the end result will look like but my duty as parent of an autistic individual is to be his most fierce advocate and fight to provide him with any opportunity in a world that is not designed for him.

When I look back to those days when we just realized something was not right, not only it feels like it was 20 years ago, it feels like my son was someone else. It felt like he was absent the whole time, not acknowledging anyone and his surroundings — he was there physically but his mind was always somewhere else.

Today he is still non-verbal but he can communicate with his AAC device for basic stuff and his personality is really coming through. Is a lot more sociable and will even prank you if he’s in the mood. I still hope someday I will be able to have a normal conversation with him and that he will be an independent and self-sufficient individual but for now I just keep fighting for him. Only time has the answer.

Feb '24 update

When I wrote this back in November 2023 I closed this post questioning myself if I would ever have a conversation with my son. We are not quite there yet but as of February 2024 we've seen great strides towards speech, among other areas. Oliver started counting numbers one day out of the blue and we've also heard ABCs here and there although not as often as numbers.

Oliver is about to start speech therapy, so we are very excited that this paired with the sudden emergence of words will have a profound impact on our quality of life and his future.

There's still a lot of ground to cover with him and the challenge is still a daunting one, but wanted to let this small update for those on a similar journey. The road is not easy but there's hope!