Tuesday, January 19, 2010

Empathy and Autism (by Kate Altman, M.S.)

From time to time, parents will tell us that they do not believe their child really has autism, despite having all of the symptoms, because they do not “lack empathy.” Like these parents, I have also read literature that makes this assumption: that people with autism have little or no empathy for others. This assumption puzzles me. “Lack of empathy” is not a diagnostic criterion in the Diagnostic and Statistical Manual for Autistic Disorder, Pervasive Developmental Disorder, or Asperger’s Disorder. Similarly, the most seminal and thoughtful research and literature on ASDs (Uta Frith, Lorna Wing, Simon Baron-Cohen, etc.) does not assert that individuals with ASDs lack empathy.

I have asked individuals with ASDs about empathy, and they have described to me feeling extremely empathetic at times; in fact, several of these individuals have mentioned that they feel “too sensitive” towards others. One young man on the spectrum noted that when he sees someone experience something negative, such as falling down and hurting themselves, he winces as he literally “feels their pain.” However, he noted, his empathy is only evoked when he, at some point, has experienced the same situation or same evident emotion as the person with whom he is empathizing. If someone is experiencing something he cannot relate to or understand from his own past experience, he does not “know to empathize” and then may appear insensitive.

This young man’s insight leads me to believe that many people misunderstand (Simon Baron-Cohen’s) “theory of mind” deficiencies in people with autism as a lack of empathy. “Theory of mind”, or ToM, is the theory that we have the capability to attribute mental states to ourselves and to others (or, as the saying goes, to put ourselves in another’s shoes). Theory of mind ability constitutes the first step in empathy. While people with ASDs may struggle with theory of mind ability (probably due to a lower-than-usual amount of mirror neurons in the brain, which facilitate ToM), they do possess at least some of this ability, and studies have shown that they can and do develop ToM abilities over time (in fact, studies show that many individuals with Asperger’s develop ToM abilities nearly on par with most neurotypical adults by adulthood). Therefore, a person with an ASD (especially as a child) may struggle to understand someone else's mental state, but once they do, they can certainly feel for that person.

Literature that suggests that individuals with ASDs lack empathy is not only incorrect, it is dangerous, because it may lead to the belief the people with autism are sociopathic and not safe to have around. Furthermore, it is simply untrue and undercuts the incredible sensitivity towards others that many people with ASDs possess. Over the last couple of months, I have been conducting research with young adults with ASDs in college, and, as a college professor, I can confidently assert that this group of students have been among the most thoughtful, and empathetic, that I have met.

Wednesday, January 6, 2010

Is it ok to grieve again?

Since our last blog about handling the holidays, we have heard from many readers. Some were doing well and enjoying time with their children, others experienced sadness and some told us about mixed feelings of joy and sorrow. One reader asked us if it was ok to grieve again. No one asked if it was ok to be happy.

Since the question about continued grieving comes up frequently, we are taking it up here, and we welcome readers to share their thoughts and experiences on our blog or Facebook wall, or just respond by email to therapist@alternativechoices.com.
Answer: From Dr. Cindy Ariel:

The sadness left by grief never goes away. At any moment, I am able to look into my grief spots and feel the sadness and emptiness left there by significant losses. Losing the child of our dreams can certainly be one such loss.

There are many losses through life, and seen in a larger perspective, each loss adds meaning and depth to our lives. We all feel grief at various points in our lives but that does not minimize our times of happiness and joy. In fact, grief magnifies joy because happiness is so much sweeter after experiencing sadness.

One strategy is to do extra things that make us joyful so that the happiness in our lives balances or hopefully even outweighs the sorrow. It does not make the sorrow go away but it surrounds it with a cushion of good feelings and makes it easier to manage.

As we come to accept where our children are actually at and who they really are, we dream new dreams for them and for our families and these new dreams are much more likely to be based upon reality and therefore are more likely to be attainable.

When we once dreamed about having philosophical discussions with our child, we may now simply long to hear them call us mommy or daddy or say I love you…just once. Our dreams may involve easing up on hearing our child talk and focusing instead on just having her look into our eyes and smile. When such new goals are reached, it is joyful indeed. This is not to say that sometimes we don’t still wish or long for that once dreamed of discussion. When we focus there, we may always feel sadness that those discussions may never take place.

Dreaming new dreams and rejoicing in new goals helps us feel happier in this new moment with the child we actually have. Nobody wants any hardship to befall their children. We may feel disappointment, guilt, and sadness when our child has a challenge that will make life, which is already difficult, even more so. We get through the adversity and we love our children even as we grieve and we celebrate their unique lives and the time we are given to be together.

From Dr. Robert Naseef:

Grief may come and take you places you never expected to go. This is a normal and natural. It comes and goes. First of all realize that you are not alone when your heart aches. So go ahead and look at your grief. Observe your thoughts and feelings. Notice any sensations in your body. Accept them and be kind to yourself about having them. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. I have learned through my son’s 30 years that you don’t have to lie to yourself. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life.

It is natural to wonder about what might have been especially around the holidays. Your longing for the child of your dreams or a typical life for you and your family may endure. You have to learn to live with that yearning, and you can do that, but you don’t have to lie to yourself about how hard this can be. As Kahlil Gibran reminds us, “joy and sorrow are inseparable . . . together they come and when one sits alone with you . . . remember that the other is asleep upon your bed.”

Secondly, try to accept yourself as you are—a kind and loving parent doing your best with your child who is undoubtedly doing his or her best under trying conditions. A perfectly lovely child with special needs can be very hard to be with because of their behavioral, social, or communication issues. When you love somebody, you love to be with them. When you don’t feel that and think you should, the guilt comes up, and your heart aches. As you can accept yourself in a kind and compassionate way, your heart heals, and then the grief lightens. Acceptance can bring change.

Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family. This is the gateway to love and happiness. That deep connection that a parent feels with a newborn, or a child’s first steps, or first words can be felt at any moment when we are truly aware and attuned to our child. That deep connection is alive inside you. As you rekindle it, you can actually experience very deep happiness. Let us hear from you about your experiences.