Thursday, November 11, 2010

A Refreshing Meeting With a Neurologist Who Understands

I had a long day yesterday as I woke up in Hannibal and rushed back to Saint Louis for a 11AM meeting. This meeting was one that I wanted to attend because it was a lunch and learn style meeting without the lunch.

Over the course of this blog I have talked about some of my experiences with Matt (the TouchPoint Community Liaison) at these lunch and learns. I never know what to expect at these because some doctors just don't care about autism, some have a little education, and others know about it and what to know more and what they can do better (my favorite group; all should be like this!).

The meeting yesterday though was with a childhood neurologist that has been well versed in the autism field for two decades. I will say that I won't mention names just because I don't know if he would want that, and if I mention the good I would have to mention the bad and that is something I don't want to do. This blog is about my experiences in life and the field so naming others is something I will rarely do.

Anyway, disclaimer aside, this meeting was to further the relationship between TouchPoint and his practice and the first half of the meeting was about our organization and what he sees in some parents. He told story after story of children that were on the spectrum but the parents refused to believe it. This saddened me because denying it isn't going to change the person! Furthermore, a diagnosis is not the end of the world and while this may be off topic of what I wanted to write, a diagnosis isn't a one-way ticket to failure. This neurologist knows this, of course, but still has trouble selling this to parents.

After 45 minutes I finally felt comfortable and found a way to enter the conversation. What also helped was Matt gave me a great lead-in and I started talking about my experiences. This was the first time I talked to someone so high up in the field, if that is the right way to phrase it, and I was actually nervous. I didn't know if my concepts would make sense as my concepts are analogies and metaphors, but after each concept I presented he asked me about those in more detail. He wanted to know more about what my school years were like and all in all it was a great conversation.

This is how all doctors should be. I have been critical of doctors in the past on here and when I am I am not bashing the field as a whole. In my opinion one doctor that denies autism or says, "don't worry about it" is too much. I know most doctors do not have this attitude, but if one does it is worth writing about. From experience though there is more than one out there, but as a whole I feel doctors do want to know more.

After my post on Tuesday I felt better about the world after seeing this neurologist's dedication to learning about the field and understanding of the spectrum. He understands that it is a spectrum and even mentioned that one case of autism is just one case.

After my negative tone on Tuesday I wanted to have another positive post. It isn't all bad. While I may focus on the need that is out there more than the positive, this neurologist left a lasting impression on me that has bad as some of the horror stories I have told, there are equally good people out there.

Tomorrow I will blog about a sibling workshop I attended last night and over the course of Saturday, Sunday, and Monday I will be rerunning the "Schumi and Me" three part series as the SKUSA SuperNationals are next week and I will be headed to Las Vegas to flag that event on Tuesday. I can't wait!!!


  1. I'm a teacher, not a doctor, but I find your examples and analogies very helpful. For someone not on the spectrum, it's very difficult to imagine what it feels like. Analogies like yours give me a much better idea. I'm sure it was the same for that doctor.

  2. Aaron...I am not sure how to put this. I am a parent and involved at TouchPoint. It is so hard to hear those types of stories (the neurologist and the parents not accepting), its another for those people to be people you know. It should force you to act, which it has, "What did that race card driver (Jimmy Johnson???) do for Autism today by winning a race? Nothing." So you do what you can, when you can and how you can. It is a slow war to win, but you can't win it by being silent right? You are doing something I would love to do everyday. You do it very well, keep it up.

  3. As a parent of a child who has autism, I cannot understand the denial of parents when there is suspicion their child is somehow wired differently than the majority of the population. Having dealt with less-than-stellar neurologists when seeking a diagnosis for my son, I was relieved (and happy) when we finally learned what we had long suspected. That diagnosis is a powerful tool which allowed us to identify treatments which would help our son thrive.

    I thoroughly enjoyed your presentation in Palmyra last week, and am now enjoying reading your book. Thank you for educating others on your perceptions of the world.

  4. I have some psychology and mental health background because of my OT school education. So, I have a pretty good understanding of this. I think the stages of grief model explains it well. Denial is the first stage in this, then it is followed by anger, bargaining, depression, and acceptance. As with any stage in the stages of grief, there is NO set timeline on how long (in this case parents) will be in for. It also maybe that the parents are transitioning from one stage to the next.