Memories and Poker

You have heard of Temple Grandin, I am sure. A very successful, very well known autistic woman who has provided the autism community much needed in-sight into the workings of the autistic mind. How wonderful she can remember her early years. Matt can not.

Matt has changed dramatically. I consider him a success because of the obstacles he has overcome. Unfortunately, he is not done with the challenges set before him. Matt is still . . .becoming.

He was classically autistic at age 2 1/2. Flapping hands, spinning toys, twirling, lack of speech or eye contact, lining up cars, "inappropriate laughter and tears". Upon learning to speak he used echolalia - the constant echoing back of something that was said to him. He hid under chairs and tables, behind furniture, had not learned bowel control, and ate only items from a very limited list of foods. He spent a lot of time in the safety of his room, away from others and noise. Yep, classically autistic.

Yet now I see a young man that laughs with others, has interactions and communicates verbally very well. Gone are the flapping of hands, the spinning, the twirling, the downward cast of the eyes. If he knows you, then he looks directly at you when speaking. If he doesn't, his eyes flicker away and back during the conversation, as if trying to gauge if it is safe. There's no echo in his speech patterns. If he doesn't understand, he'll provide the expression of confusion and say "I don't know". His sense of humor is amazing, always ready to give comic relief. There's no hiding. No more lying on the ground in protest.

Each autistic behavior slowly gave way to new behaviors, some challenging, some not. With the disappearance of an autistic trait also came the disappearance of memory for that trait. I didn't realize it until after it had already occurred several times. I would remind Matt of some event and he could not recall it. Again, much later, I would ask, "Remember when you use to do . . .?" and again the reply would be a frustrated "No". When he was around 12 years old we talked about it. I had caught Matt crying quietly in his room. Sitting next to him and placing my arms around him, I inquired as to what was the problem. He stated simply, "I can't remember". At first I thought, "He's crying and doesn't know why".

I was wrong. After pushing and pulling to get to the problem it finally dawned on me - his memory of himself was fading and it terrorized him.

I suppose a person suffering from Alzheimer's disease would understand better than anyone the terror of knowing your mind is going. Matt's memory for data was still functioning - and at top speed. It was the emotional memory that was deteriorating. He could not remember certain things in his past - like twirling, or shadow dancing. He couldn't remember ever having flapped his hands. When anyone brought these things up in his presence, or within hearing distance, he would push his mind to recall what they were talking about and could not find it in his memory.

No one I have ever met remembers everything about everything. Our minds do not work that way.We pick days or events that have emotional significance and store them away, everything else goes into the trash. We store trash too, but we can retrieve it for only so long before it is buried deep within our mind. This is the basis of the mental-health profession. After all, psychology and psychotherapy dig in our trash, bringing what it finds back to the surface - the main storage area of our memory.

Matt could remember trips and movies, and songs from the immediate past, but not a memory survived of his classically autistic self. He felt as if he had not lived prior to today. He was in mourning of his own memories.

I had to try and help him through this scary time, and I needed to tread carefully. I started slow, explaining to him that I, too, could no longer remember much about my days as a young child. I told him it was normal to let some things go. I then told him for the first time what autism was, adding that he was learning quickly and that he was doing very well and was getting better. Matt needed to hear it. It made sense. He was becoming aware that he was different, that his siblings acted like the people on TV and in the movies - whereas he did not.

Matt was entering puberty. He grew like a weed, his blond hair slowly turning a deep brunette, his voice cracked - then deepened. His outward appearance was obviously changing. Is it such a leap to think his mind was changing too? Do you remember your puberty years? A confusion sets in as to who you really are. You become self aware. You look to your peers for clues on how to act, what to say, what to wear. You secretly believe your friends have the inside track on behavior and taste. You mirror who you are with, trying to fit in. Matt relied on his siblings, mostly his older brother Christopher, to show him how to act and dress. He wanted to be just like him. He began to like the same video games his brother liked and had his back on every argument with me (a later blog, I'm sure). Where before I had picked out his clothes each day, Matt was now deciding these crucial elements himself, choosing items of clothing that he saw others his age wearing.

Could it be possible the hormones flooding his brain during puberty actually enhanced a self-awareness that had been lurking beneath the surface? Was the loss of memory of who he was related to the new connections the hormones initiated? I like to think of it as a pruning of the dendritic tree to allow room for new growth. The old connections to classically autistic behavior were being pruned, replaced by newer, stronger connections between the emotion and learning centers of his brain.

Over the years I have talked openly to Matt about his autism. We talk in private, secretly discussing changes in everything from brushing his teeth to how to answer a phone. He understands and he tries to modify his behavior. His behaviors were modified during these years not because I wanted him to change, but because he wanted himself to change. I will love him as he is, as he has been and for who he will be. I have no unrealistic expectations (hopes and dreams and goals to pursue, but nothing unrealistic). It is Matt who expects himself to be perfect - always has, always will (another blog topic for later).

A few years back at Thanksgiving, just after dinner and setting up for the annual poker game, I heard Matt sobbing from his room. My heart instantly ached. I went in and sat down. He waited for me to ask what was wrong, then burst into tears as he replied in a desperate, heart-wrenching voice, "I'm different!" followed by "I hate my brain!". His eyes glanced toward the poker table. Matt had never played cards with us at Thanksgiving. He had never taken part in our family poker night - too much noise, to much sensory overload. He had always chosen the safety of his room. He had always been different. He didn't want to be different anylonger, but he was unsure how change.

His sad eyes, his sobbing voice and his gesture all screamed at me, "He wants to play!". He had been watching our poker ritual from afar for years, and was always invited to play. Up to this point, he had always refused, declining in a polite, "No thanks". Could this Thanksgiving bring a new response? I asked, "Do you want to play poker?". To my surprise he answered a resounding "Yes!" Smiling, my heart beat racing, I lead him to the den. Matt was greeted with high-fives and smiles all around. His siblings provided a fury of encouraging remarks and funny quips, immediately putting him at ease.

That night, Matt learned to play poker. More importantly, Matt chose to interact with a very noisy group of people, learn something new, and take a leap into the unknown. He conversed (short and to the point), he played, he provided comic relief, and he dealt with the noise and the commotion of the group. This was his family and they wanted him there, wanted him to be a part of something special.

At the age of 22, Matt bravely chose to step out of the safety of his room into the unknown. He entered our world.
Hello, Matt, we've been waiting for you.