When Emma was just two years old she was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified or PDD-NOS, which is the “it-may-be-autism-but-we-can’t-be-sure-maybe-she’s-just-a-bit-different-so-let’s-just-wait-and-see-what-happens-before-we-say-it’s-autism” diagnosis. Two years later, Emma was diagnosed with autism. But in 2004, when Emma was given her PDD-NOS diagnosis the neuroscientists, Kamila and Henry Markram, had not come up with their Intense World Theory for Autism. The idea that Autistics have a brain that is far more sensitive to all stimuli than non autistic brains, was not something people were talking about.
Emma has since told me that she can “hear” people. When I asked her what she meant by that, she wrote that she could sense people’s emotions and inner turmoil. She could hear their moods. I have been told and read similar things from other Autistic people. This is something Barb Rentenbach also talks about in her must read, book, I might be you. Now add to the intense sensory sensitivities that ebb and increase suddenly and without warning, lights, noise, touch, smells, tastes, feelings and you will begin to understand how overwhelming and unpredictable life can be. Or, as Emma wrote last week, “On Monday a noise is pleasant, but on Tuesday the same noise is not pleasing to me.”
Yesterday, Emma wrote about what happens when she bites herself and the things others can do to help, as well as the things people do that make it worse and it made me think about my reactions to seeing my daughter hurt herself. I can go through a fairly quick series of feelings. I might feel scared, oh, no! She’s hurting herself, this is terrible, I have to make her stop! and concern mixed with confusion, what can I do to make her stop? But I also may feel other things too, like a desire to control the situation, annoyance and embarrassment that she is screaming in a public place, stress and overwhelm from the tears and her obvious upset, feelings of inadequacy that I should be able to help her more than I am, wondering whether I am a bad parent, believing that if I were a “good” parent, she wouldn’t do these things. Questioning my own reactions, worrying that if I don’t force her to stop, people will harshly judge me or criticize me or believe I don’t care that she’s hurting herself. Or maybe the situation is also stressful for me and I’m also in overwhelm. And on it goes. But as Emma wrote, “I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.” So if I don’t spend the time to think about and become aware of what I’m feeling as I witness her, I will react in ways that actually exacerbate her overwhelm.
I am once again reminded of my car ride with my beautiful, friend Ibby while visiting her in Chicago this past December. I wrote about that ride ‘here.’ What Ibby did was such a perfect example of what I needed, though I did not realize I needed it and could not have asked for it, had I been asked – what do you need? A calm, loving voice, carefully telling me what was going to happen next and why, a calm loving voice coming from someone who genuinely loves me, who I know has no agenda, was not trying to control me, whose words and concern were completely for me, with no other motivation than to truly be there for me… this was what Ibby gave me during that car ride. Ibby did not try to take away my feelings, she didn’t try to control them, she wasn’t judging them, she was calm, patient, accepting and above all, incredibly kind and loving. And, by the way, Ibby could not stop the noise the wind shield wipers made, it was not something that was within her control, it was snowing hard, she could not drive without them, yet even so, what she did instead made all the difference in the world.
It seems so simple, it seems so obvious, but it is actually quite rare to have someone do this for another. So I will end this by encouraging all who want to know what they can do to help someone who is deeply distressed, examine your feelings, really look at them and make sure you understand what you are feeling before you attempt to help another, because if you’re becoming upset with someone else’s upset, anything you do will cause the other person to only become more upset. Until I can get to a place of having “helpful thoughts of calming kindness. Reassuring words of understanding, instead of irritation and impatience” my response will add to the other person’s overwhelm.
*I just have to add here, this is something I find very difficult to actualize. It is a work in progress, but it is vitally important.