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A First-Person Perspective on Anxiety and Autism

An autistic adult shares her perspective to foster autism acceptance

In honor of Autism Awareness Month, I interviewed Dr. Catharine Alvarez so that she could share her perspective on autism and anxiety as an adult on the autism spectrum. We hear primarily about children and teens with autism, and it's so important to hear the voices of adults who experience autism themselves.

Please meet Catharine Alvarez, mathematician and founder of Math Wizard, student of psychology, blogger, and homeschooling parent of two great kids.

What do you think about April being “Autism Awareness Month”?

It's been much talked about by autistic advocates because there is a growing movement of autistic adults and parents of autistic children to move away from some of the more negative messages around autism and to promote autism acceptance rather than just awareness. Nowadays, most people are already aware of the existence of autism, and awareness campaigns tend to focus on the negative aspects of autism with the goal of eliminating it. Promoting acceptance means looking for ways that society can include autistic people as they are instead of trying to fit autistic people into society by insisting that they be “less autistic.”

Can you give readers your personal insight about the relationship between autism and anxiety? I know my recent Psychology Today article on this topic resonated with you.

My own experiences with autism and anxiety lead me to believe they interact with each other in ways that can be disabling. As you pointed out in your article, anxiety can be secondary to autism because sensory overwhelm and negative social experiences can lead us to develop anxiety about certain environments and situations, but the interaction goes the other way as well. Anxiety can lead to avoidance of experiences that could be social learning opportunities for children and adults on the autism spectrum, and anxiety can make autistic people more rigid, more dependent on routine, and can make it more difficult to regulate our emotions.

Why do you think there has been such a dramatic increase in the rate of diagnosis of autism?

I see the increase in diagnosis as a result of describing autism as a set of behaviors that are actually common coping behaviors that any human being will exhibit under stress. Social withdrawal, low eye contact, rigid insistence on routine, repetitive behaviors...all of these are basic human attempts to cope with an overwhelming environment. So "autism" has become a catchall for many types of atypical neurology that lead to these kinds of coping behaviors. It's so important to deal with anxiety before trying to address any other issues or expect someone to respond to teaching.

This is where acceptance comes in. Acceptance requires people to acknowledge that a situation can be extremely anxiety provoking for an autistic person even if it would not be a problem for most people. Acceptance means understanding that behaviors like harmless stims, reduced eye contact, and a need for routine are ways that autistic people cope with anxiety. I think your recommendation to honor the needs of autistic kids is so helpful because it allows them to take the lead in managing what they can handle. All children need a zone of safety that they can retreat to and then venture out again to explore and learn when they are feeling calm and open to learning.

You have some terrific observations about my work with The Worry Monster…can you explain your personal thoughts about the concept?

I know that the Worry Monster would have been a problem for me as a kid because of my strong tendency for literal thinking. I would have been very upset to be told that a Worry Monster was inside me making me scared and I had to "fight" him somehow! For any child who is a literal thinker, clear facts and explanations may be a better choice. For example, it would have helped me very much to learn early on about emotions and the sensations they cause in our bodies. For a long time, I was not even reliably able to discern when I was experiencing anxiety. I thought there was something physically wrong with me. Using emotion words, talking about how emotions feel in our bodies, and encouraging children to notice and talk about these sensations and feelings can go a long way toward developing social skills and cognitive empathy skills. We have to understand ourselves before we can begin to understand others. I do think the Worry Monster concept can work for many children though, and as kids mature they are often more able to understand the idea of metaphors like Worry Monster.

There has been a lot of talk about “Theory of Mind” and autism. Can you explain this to those who are not familiar with the concept?

Yes, there is a persistent and negative stereotype of autistic people not having a theory of mind in the sense of not understanding that other people have minds and may see things from a different perspective than we do. My own experience, and that of many other autistic people, is that we do understand that other people have different perspectives. However, we can be stumped when we try to determine someone else's perspective because of difficulties with social communication. There is a difference between not knowing other people have minds and not being able to figure out what might be in their minds.

Saying autistic people lack "theory of mind" tends to be a hot-button for people especially because it has led some to conclude that autistic people lack empathy. I have also not found that Autistics lack empathy. If they know that someone is hurting, they certainly can and do feel empathy for that person. However, there are some barriers to expressing empathy. Knowing someone is hurting may be so emotionally disorganizing to an autistic person that they are unable to figure out the needs of the hurting person or try to tend to them. Also, the usual nonverbal signals that "I am hurting" may not be understood by an autistic person. I find that autistic people are generally capable of empathy, although this is not universal. Of course, empathy is not universal among non-autistic people either. In other words, lack of empathy is not a defining feature of autism.

What would you like to tell others about your experience of anxiety and autism?

When I was a kid, I was often afraid of other children because to me they seemed totally unpredictable. I felt more comfortable with adults. I used to spend a lot of recesses in the library or hiding in the bushes. Not surprisingly, this did not make me seem less odd to the other kids! I was very sensitive, and experiences that might have been merely upsetting to most kids were traumatic for me because of my confusion and continued to affect me years later. Today, anxiety still plays a major role in my periodic depressive episodes. It is a constant struggle for me, and I have to make conscious decisions every day to move toward things I need or want to do, but which cause me anxiety.

I think acceptance of autism can go a long way toward alleviating some of the anxiety because when we feel accepted as we are, we worry less about trying to pass for normal. Acceptance is permission to do what we need to do in order to feel comfortable expanding the range of where we can go and what we can do.

Thank you, Dr. Peters, for inviting me to share my thoughts! Professionals like you can make a big difference by getting the word out about Autism Acceptance.

Thank you, Catharine!

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