Should we stay stuck in the Stigma around Autism?- by Vicky Westra

Today, the stigma of Autism is alive and well! All we need to do to verify this is to Google the word “Autism” to see the results. Almost everything related to autism defines it by its challenges and negative outcomes. Things such as high unemployment rates, low independent living rates, lack of funding, shortage of programs, non-social, lacking communication skills… all of which support this conclusion. No wonder this seems to be the case!

When we received the diagnosis of Pervasive Development Delay and Autism for our daughter Gabbi over 20 years ago, we immediately searched (what was available on) the internet to see what we could find. What little we saw would scare any parent! Unfortunately, not much has changed since then. No wonder that when a parent receives this diagnosis for their child, or a person gets the diagnosis themselves it was such a dark day. It was for us.

Fast forward 10 years, when I was given the wonderful opportunity to start a training and employment program for those on the Autism Spectrum. This was one of the biggest gifts of my life because it allowed me to start seeing Autism in a whole new light. As I started to train and work with these wonderful and gifted young adults, I realized that many of the things I believed about the stigma of the diagnosis were completely inaccurate.

We initiated the program with 4 young adults who never before had been given an opportunity for employment. When they first started, I was immediately able to spot some of the characteristics that I had come to know so very well with our own daughter. Things like lack of eye contact, processing delays and communication challenges were very visible. What I didn’t expect was to come to understand the true reasons why these characteristics exist.

Let’s take eye contact as an example. For years we had been asking our daughter to “share her eyes” and to look at us when she was talking to us. This is common in our neurotypical world, so it was our thought that she should “fit in” and be able to maintain good eye contact.

Little did I know that for many Autistics, it is difficult to maintain eye contact for a variety of reasons. Sometimes it’s challenging to listen to what one is saying and also try to interpret facial expressions. For some, it might cause some pain or discomfort to do so and for others, it may just be very distracting.

People that don’t know this can believe the stigma that says that people with Autism aren’t interested in others, or that they are in their own world because they don’t connect through our “neurotypical” ways (eye contact being one of them). I found this to not be the case and discovered that when our students understood the ways our neurotypical world interpreted lack of eye contact (uninterested, disrespectful, detached), that they were very willing to gain the skill and practice to make improvements. My hope is to someday get to a place where our understanding and expectation around eye contact can get to a new level. From an employment perspective, this is probably most true in the interviewing process, where so much weight is placed on eye contact.

Next, there are what we call “processing challenges”. Oftentimes with our daughter, when we asked her a question and didn’t get a response right away, we would assume that she either didn’t understand, or that she just didn’t want to answer. Similarly, children with processing delays in school don’t get an opportunity to participate in a discussion or answer any questions because the teachers make these same assumptions that we did.

When starting the program, I noticed that our students needed more time to properly answer the questions I was posing, because they would give me verbal or visual cues that they were thinking about it. Gabbi never did that, however I subsequently realized that she also needed more time to formulate her answers.

We are known as the “now” generation and communication is flying at the speed of light! However, an autistic person is typically listening to what is being said and then thinking about their response. This can take a little longer than what we are used to, however I have come to realize that these are very attentive listeners and very thoughtful responders. I have actually adopted this way of being, because I find that when I take a little time to focus on the question that I have a more thoughtful answer. Again, here is yet another thing that I thought was a negative, that has now turned into a very positive characteristic that even I have adopted!

Finally, one of the other stigmas of Autism is that they have “communication” challenges. While it’s true that many autistics don’t “read between the lines” or understand sarcasm, I find that many just have a very direct communication style. If you want them to do something, just tell them precisely what that is. You don’t have to sugar coat it, or worry about hurting their feelings, just be very direct and specific. The more direct and specific, the better…because that is typically the way that they will communicate with you! By the way, this also applies to everyone!

Once again, here is what we are considering a negative characteristic that is really just a different way of being.

Food for thought: What if we were to truly understand why people with autism do what they do? Would the stigma just fall away so that we could understand how to better connect and interact with them?

When I’m around people with Autism today, I don’t feel any different than when I’m around neurotypical people. My definition of what I consider “normal behavior” has expanded out to include everything I’m seeing and experiencing. This is the definition of Neurodiversity, by the way. It says that the normal variation amongst humans is natural evidence of our evolution. I just call it seeking to understand others and accepting them just as they are. Wouldn’t it be ideal for all of us if we could live in a world that loves and accepts us just the way we are?? Yet another lesson that people with Autism are teaching us!

With Love and Joy,

Vicky