Let there be light – A parent’s story of an autism diagnosis

This diagnosis story was originally posted by Brian in the two part entry Let there be light on his blog Autism: Deal With It! on 7-9 April 2006 and is reprinted here with permission.

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Yesterday at work, I was talking with a coworker who stopped me in the hall. The conversation was about recognizing Autism in an infant/toddler and the parent’s perspective. As we talked, I was asked where on the Internet someone could go for good information. Despite the fact that I have spent countless hours on the Internet reading about Autism and the Pervasive Developmental Disorder spectrum, I could not think of a simple sing source of information. Sure, there are tons of sites, but very few address what is crucial for the parent who is embarking on this journey… instead focusing on what causes Autism, how to work with Autistic children, who to become and advocate, etc.

I explained to my co-worker that the most important thing for a parent was to understand that their emotions are normal… the rest, knowledge about who to talk to and what to do, will come to light as time progresses. That being said, I decided that I should take some time and blog space to relate some of my feelings and thoughts during the period prior to and shortly after Connor’s diagnosis.

First, I need to start at birth. Although some people may think it insignificant, I didn’t at the time, nor do I now. What I am referring to is that Connor failed his initial newborn hearing test the first time, but passed it the second time. When that happened, Autism was the last thing in my mind; I was more concerned that there may have been some minor hearing issues. Of course the medical professionals told me that I should not worry, as that happened some times.

Of course at his 3 month check up, his hearing tested fine and everything seemed to be doing well. At 5 months an infant should react to loud noises, turn their head towards noises, and watch your face when you speak to them. Connor never really did any of these at 5 months. If he did, it was intermittent at best. Between 5 months and 12 months is when an infant’s “baby talk” is supposed to start developing into things like “mama” or “dada”. For us, it was well into 14 month when Connor started to use “dada” and he used it inappropriately until well on towards 30 months. (He still has gender reversal issues where he will use the incorrect pronouns.)

At about 18 months, I started to suspect that there was something going on. I began to research different developmental delays on the Internet and in book stores. At the time, Autism kept popping into my head, but I wasn’t sure if that was really the problem.

Some time around 30 months (2 ½), Connor’s vocabulary started to pick up pretty well _(about 15-20 words or roughly ½ of the normal vocabulary for a 24 month old toddler), but most of his speech was developed through echoing television shows and not through conversations with his mom or I. In hind site, this was a glaring example of echophilia, something common in Autism.

I think it was probably around the age of 3 that Connor started to do self stimulation actions; such has hand flapping and spinning. He also started to make a great number of auditor noises to accompany the hand flapping. It was these actions that truly narrowed my investigation into Autism and the related spectrum disorders. I began to suspect, with a great deal of evidence to back it up, that Connor was in fact Autistic.

Over the next 6 months, my wife and I struggled a great deal. While we really wanted to know what was going on with Connor and if he truly was Autistic, there was a great deal of emotion working against us. One of the hardest things for us to deal with was a sense of guilt. My wife and I would frequently look at each other and ask if we were making it all up. At times we both felt as though we were trying to “make” Connor Autistic. It didn’t help that Connor was an incredible adaptor (and still is to this day). He made such a great public appearance that any mention of Autism to our family and friends received odd looks.

Not knowing what to do, I approached several people at work for help (the advantages of working in a hospital!). The pediatrics department was SO helpful and provided me with the information on who to contact at the regional center. We were finally on our way to a diagnosis and an understanding of what, really, was going on.

I must say that this was VERY difficult for us… in fact, I would even say that the time we spent suspecting it, but not having a diagnosis, was more difficult than trying to learn to cope with the diagnosis once it was made.

Realizing that getting into the regional center might take a while and that without a referral or a diagnosis, we would most likely be at the bottom of the list for some time. So my wife and I decided to first go to Connor’s pediatrician to get a referral. My wife made the appointment and I took the necessary time off of work. A few days before the appointment, we sat down and discussed what we would say and how we would approach this. The first thing that we agreed on was that we would not mention to the Doctor that we had suspicions of Autism. We would, instead, present our concerns and see what the Doctor’s opinion was. So, we spent some time writing down our concerns, trying to get them on paper so that we wouldn’t miss anything.

The appointment with Connor’s pediatrician went as we expected it. After presenting our concerns, the Doctor stated that he suspected that Connor may have Autism. He further explained that he could not make an official diagnosis, but would instead refer us to the regional center, where they could get Connor properly evaluated and diagnosed. Everything was happening as we had planned. It felt good to be in some semblance of control.

A few weeks after the appointment with the pediatrician, we had an appointment set up with the intake coordinator for the regional center. My wife and I did not know what to expect from this meeting, so we were a little nervous, to say the least. Fortunately enough, the person we met with was extremely helpful. She explained that, while she could do a preliminary evaluation of Connor to see if he was likely to need their assistance, she could not provide a diagnosis (mirroring what the pediatrician had explained) as that was only available from a psychiatrist. In her initial evaluation of Connor, she commented that there were certainly signs of Autism and that we needed to move forward with an official diagnosis. She did, however, provide us with some unexpected news that put a rush on things. In particular, there were a number of services that would no longer be available to Connor if he became part of the program past his 4th birthday. Being that Connor was only 2 months shy of that date, we needed a diagnosis soon.

The intake coordinator for the regional center also explained that they would only accept a diagnosis of Autism from several sources. The first being one of their own psychiatrists. Unfortunately, the wait time for an appointment with one of the staff psychiatrists was about 3-6 months, putting us past the 4th birthday and limiting the services available to Connor. We both agreed that we didn’t want that. Our next option was to travel to Stanford and have one of their Autism Specialist evaluate Connor. The last option was to have Connor evaluated by a very well respected psychiatrist in San Jose.

After some talking, we decided that our best bet was to set up an appointment with the psychiatrist in San Jose. In hind site, this was one of the smartest decisions we could have made. The appointment was a mere 2 weeks after our meeting with the regional center, so there was little time to slow down and think about things. We, my wife and I, did talk a little about “what it…”. Questions about things like, “What if he determines that Connor isn’t Autistic?” and “What if he determines that Connor is Autistic?” were the only topics we discussed over the two week period.

Now, before I talk about the appointment with the psychiatrist, I need to explain a little about Connor. You see, he is highly intelligent and has an amazing ability to act neurotypical for short periods of time. That has been a mixed blessing, as it frequently leads to people believing that he was misdiagnosed with Autism. It is a blessing and a curse to a certain extent. But talking about that aspect is something I will save for a latter blog entry.

On to the appointment… We had been properly warned that the evaluation would take a good part of the day and that we should expect to be in San Jose for about 6 hours. This meant that Aiden needed to be watched by someone. I am thankful, to this day, to our friend who graciously watched him for us.

The evaluation itself was rather interesting and included an interview with my wife and I, discussing our concerns and our experiences with Connor. There was also some time spent watching Connor doing imaginative play on his own, with his mom and I, and with the psychiatrist. From there we went on to testing for learning delays and disabilities. Finally, after a number of different things, which all are more of a blur at this point, we were done. The psychiatrist came into the room to discuss things with us.

He started off explaining that Connor was rather unique. Specifically, he commented on Connor’s initial appearance of being normal. He went so far as to say that when he first met Connor and was talking with him, he started to form an opinion that he was not Autistic and really didn’t show signs of anything. But that opinion soon changed. As he interacted with Connor more, and observed Connor’s interactions with his mother and I, the Autism started to show. The psychiatrist explained that Connor most certainly met the criteria for Autism, but was also extremely high functioning.

Hearing the diagnosis from the psychiatrist’s mouth sent a feeling of relief through both my wife and I. We looked at each other, relieved that we were not bad parents trying to press the diagnosis of disorder onto our son. We were not bad parents at all. We had been right in our feelings. Unfortunately, after the relief subsided, we both began to gain a feeling of being overwhelmed. Until this point, it was all speculation… Nothing we could do without knowing for sure. Now that we knew, we had so much to do.

As soon as we received a copy of the diagnosis from the psychiatrist, we went straight to the regional center and get started on the paperwork for getting services for Connor. Like a small pebble sized piece of ice rolling down a snow covered hill, this process was beginning to pick up speed and mass… snowballing.

As things progressed through the regional center, we were scheduled to take a mandatory course on ABA offered by them. We were excited about this. We figured that there would be other parents at the course who we could talk with about this… who were in the same situation. Unfortunately, we were somewhat saddened to find that the parents in attendance had very different situations. In fact we were the only parents there dealing with Autism. This started our feelings of being on our own in this adventure. It was tough for a number of weeks. Not only did we feel alone, but we also struggled to understand what exactly it really meant to have Autism. There were so many myths about Autism that we needed to be able to dismiss.

I remember coming home to my wife one evening and seeing her in tears. She was thinking about all the depictions of an Autistic person as being devoid of sympathy and emotion… it hurt her deeply to think that she would never be able to have those great emotions from Connor. I knew that it was not true… but helping her to understand that was tough. I began to really feel the same feelings of being alone in this battle that we had in the ABA class. Adding even more to the isolation was the increasing number of people that didn’t believe that Connor was Autistic. It came to a point that my wife and I, only half jokingly, stated that we would simply carry around a copy of Connor’s diagnosis for everyone to read.

Let me tell you, there is little worse than feeling alone in such a struggle. That feeling being compounded by the distrust of family and friends was truly a low for us.

Over time, we were able to educate our family and friends and they began to accept it, or at least they stopped challenging us on it.

As I look back at the time between when we started to suspect Connor had Autism and where we are today, I see so many places where I would have loved to have been able to read someone’s story about their trials… Just knowing that others went through the same self doubt, the same odd feeling of happiness that there was a diagnosis, and the feeling of being alone would have helped.

That is one of the reasons I started this blog. I hated the feeling of being alone and it is my hope that even if it is but one parent out there who is going through what we went through that, in reading this, knows that they are not crazy for having feelings of self doubt and feelings of happiness. And, most importantly, I can help them in knowing that they are not alone in this.