Wednesday, April 13, 2016

Death, Asperger’s and the Need to Inform


Going back to a school presentation I gave at some point in time I was asked one of the most direct and precise questions. As mentioned yesterday I love the arena of a school presentation as I truly have no idea what is going to be asked and I have to make sure I maintain my composure when a tricky question arises and at a recent presentation I had the second tensest moment of my career as an Autism Ambassador.

I know it gets old with me saying this, but I wish you all could see one of these school presentations and the empathetic and compassionate questions that get asked. If you want hope for the future go no further than seeing 400 5th graders wanting to know about the autism spectrum and their breadth of knowledge. In this presentation, though, I called upon a student and they asked, “Yes, would a person on the autism spectrum handle a death of a family member differently than a person not on the autism spectrum?” This would be a heavy question to be asked at any presentation be it to parents, law enforcement, but at this age group I knew my answer had to be perfect because I wouldn’t think questions regarding such a topic are common in a school.

In the flashes in my brain as I tried to formulate an answer I thought about deferring the question, but then I thought about the situation of the person that asked it. I didn’t know if they either had the diagnosis, realized they had the diagnosis, or had a family member that had the diagnosis. This made this such a slippery slope because I was also unaware of how many in the assembly had actually gone through this and the last thing I would want to do is upset anyone, but what if this; what if this person had either just learned from their parents or doctor that they had it or perhaps they connected the dots about and figured that they had it and what if sometime in the not so distant past there was a loss in the family and the reaction they had was, perhaps, a non-traditional response? If this were the case my answer had a lot riding on it because what if they had been mocked or ridiculed by a seemingly apparent lack of emotion and on top of that didn’t understand why they had the response they did? With my logic there was no dodging this question and it had to be answered in the most tactful and perfect way possible.

Have I mentioned I love school presentations? I do, but in the midst of a storm like this the love isn’t from the thrill of it but of the sheer importance of what my words mean. I deduced there was something of great gravity to this question as it was too perfect and too precise, but how to answer it? I played it out once again on what could lead to that question and I figured the best reason was that they had gone through it so I explained it this way…

I spoke to the whole group but my words were directed towards just one student when I said, “Can a person have a different reaction to a loss in a family? Most certainly and those not on the autism spectrum may go through the same thing, but for a person on the autism spectrum there may be an abundance of emotion or perhaps an apparent lack of emotion. Now here’s the thing; if you read enough literature on the matter or hear the news enough and hear a misguided expert you may read or hear it stated that ‘a person with Asperger’s has little to no emotions and simply doesn’t care.’ If you ever hear or read that know that this is false. We have all the emotions in the world but the catch is this. Our brains, from the part where we experience emotion to the part where we express it is much like a river except it’s completed clogged upstream and navigating from point A to the point where we can express it is difficult and sometimes impossible to navigate. With all that said can there be a different response? Most certainly yes, but emotions can be difficult to navigate and much more difficult to express so those around us think we don’t care when deep down we are hurting but have no idea how to tell anyone.”

With that answer given I could breathe again, but only just. I was on the brink of tears myself hoping my words had some merit and if my fears of why it were asked were true I hoped my words offered some solace and as the presentation wrapped up and I was driving home I couldn’t shake this question. I’ve lost count of how many times I’ve been asked, “My child has Asperger’s but they don’t know it. Should we tell them?” and I’ve always given a wishy-washy answer which I felt to be true. Each person is going to be at a different development stage and each person is going to take the news differently. Some won’t care, others will take it as a badge of honor, others may fear the label, but in it all, should a case happen like this question, and a person does seem emotionless in a time of a great loss, and those around ask, mock, or get angry at the behavior that person that has the diagnosis is going to be dealing with something much more than the loss itself. This isn’t to say the loss is going to be minimized; quite the contrary as for many days, weeks, months, or maybe even years the mourning process will never truly take place because that person is going to be stuck on the fact that they were told they were supposed to behave a certain way or have certain emotions when, in fact, they might have but didn’t show it. Now, if the diagnosis is confirmed and it is explained to that person and the family the whole sequence I described would play out much differently and perhaps a better support system could be in place as those around could just possibly understand that just because there is no outward emotions doesn’t mean the inside is hollow.

That student’s question is going to be with me for a long time. I’m going to play and replay it many times hoping I answered it rightly, but I also now I may give a stronger answer when asked, “should I tell my child…”

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