In honor of Autism Awareness Month, I spoke to 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.
Catharine Alvarez is a mathematician and founder of Math Wizard, a student of psychology, a blogger, and a 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."
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.
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 that might help other parents and families?
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.
# # #
A version of this post originally appeared on PsychologyToday.com