Autism and Empathy

Anxiety is an elemental aspect of autism that severely impacts the lives of ASD individuals. Researchers are beginning to hone in not just on the fact of that anxiety, but the nature of it. Alexithymia is the term for having trouble identifying one’s personal emotions, a condition common to half of all people with autism. The word itself translates to ‘no words for emotions.’ This basic inability to identify and describe one’s own feelings contributes to anxiety, depression and problems with social communication.

New studies are examining how alexithymia affects the long term mental health of ASD individuals.

Researchers believe that therapies specifically addressing alexithymia could improve the mental health and the quality of life of ASD individuals throughout their lives. And there’s an implicit caveat to clinicians that they should take alexithymia into account with ASD patients because treatments such as cognitive behavior therapy requires individuals to be able to identify and discuss their emotions. So ideally, alexithymia therapy would precede cognitive therapy.

Another important revelation is that some social-communication difficulties seen in autism such as the inability to identify emotions in others or to respond to others’ feelings may be due to alexithymia. If you can’t do this for yourself, it stands to reason it would be difficult vis-a-vis others.

This is an important finding because people on the spectrum have received a harsh label as being lacking in empathy. In the 1980s Simon Baron-Cohen and his cohorts advanced the “theory of mind” that autism is the inability to achieve empathy for others. This concept permeated early diagnostics and unfortunately belief in “mindblindness” continues to this day.

Autism families know differently. And growing body of writing by autistic individuals reveal to all just how deeply they do feel for others and the world around them. For example:

• The book “The Reason I Jump” by Naoki Higashida.
• The documentary “Neurotypical.”
• The YouTube channel “Neurowonderful” by Amythest Schaber.
• The TED Talk “Women and Autism” by Sarai Pahla.

It is not that autistics are insensitive, but that they overwhelmingly so. The rising tide of the Neurodiversity Movement framing autism as a civil rights issue is further evidence of how awake and aware they really are.

Deeper understanding and clarity of this empathy issue emerges from the work what autistic researcher Damian Milton has termed the double empathy problem. Milton highlights autistic vs neurotypical empathy as a two way street, noting that both autistic and nonautistic individuals may have difficulty understanding and feeling for one another because of their differing outlooks and experiences with the world. But while the misunderstanding may be reflexive, the onus is placed upon autistics to understand non-autistic perspectives and to “normalize” and assimilate themselves to the neurotypical world. I recall Dr. Tony Attwood addressing this topic at a seminar I attended. He said, “How do you solve Asperger’s for your child? Let them go to their room and close the door. The problem is the rest of the world is not trying to understand and appreciate them.”

I talked with my autistic young adult sons about alexythemia and the double empathy problem over dinner last night. It was very touching to see how deeply they connected to the hardship of having to always be the ones who have to understand without ever being understood. And the notion of not being able to identify your own feelings and subsequently becoming anxious and overwhelmed really struck home for one of them in particular. A new light shone in his eyes. In the course of my sons’ lifetime, the narrative of autism has begun to change in positive ways. As we approach Thanksgiving, that is one thing for which I am grateful.