World According to Matt
|Posted on January 5, 2014 at 4:10 PM|
FEAR and Autism
Fear. When trying to understand the mind of an autistic individual it’s the one thing you absolutely must comprehend. Temple Grandin brought it to light for millions of parents when she said in her book, Thinking in Pictures, that “The principal emotion experienced by autistic people is fear”. I welcomed her insightful statement and prayed others would see that one simple sentence above all others. I understood the reference immediately because many years earlier I had come to the same conclusion while watching and learning from my moderately / severely autistic son, Matt. I saw it in his first autistic behaviors, and I felt it radiate from him long ago, beginning when he was only 2 years old. It was my first priority as a parent to an autistic child – to make him feel safe. Not long after I realized that the more I made him feel safe and protected the more progress he made.
Matt still battles fears today, at the age of 28. He has shown me time and time again just how courageous he is as he tackles each fear – especially the really big ones; the ones connected to socialization and verbal communication. He easily picks up on other people’s emotions and it’s their emotions that drive his ability to interact. For example, if he is around other’s who display smiles and have lighthearted voices he will attempt to socialize, even if it’s just standing near them. If they show anger and / or frustration he feels overwhelmed and uncomfortable. These two emotions scare him – as if a thousand bees are stinging him at once. He is instantly afraid and anxious to get as far away from the feeling- and that person - as possible. And if he is around someone who is sad, he feels like he could cry too, wanting to comfort them, but not sure as to how. The emotions of other people can confuse him and if he is confused, then he is also scared.
With all that said, let me tell you a story . . . about this same young man facing one of the biggest fears of his life, and the courage that it took to conquer that fear.
Matt’s biological father, Duane, had not been in his life since he was a toddler. He has no memory of him. Their first encounter was in a hospital, where his paternal grandmother was in intensive care and the outlook was very bleak. For Matt to even enter the hospital and see his beloved grandmother hooked to tubes, smell the strange smells and hear the unfamiliar sounds of medical equipment was a tremendous step. He did it simply because his older brother did. Matt’s older brother, Christopher, is his hero. Much of Matt’s progress over the years came from his desire to be like his older brother. So, when Christopher entered that hospital, Matt did too.
I had tried to prepare him for that day, explaining why his grandmother was there and that he would probably see Duane. The concept of having another dad besides his step-dad, Tom, was confusing enough. After all, how could there be 2 dads? He took in the information and was still trying to process it when he actually met him. Because Duane had not been in his life, he didn’t understand the severity of his son’s autism. He didn’t know the intricacies of how to interact. He didn’t comprehend the fear. He introduced himself. Matt, not knowing what to do looked downward and took a step back – typical fear response to anyone he didn’t know. Duane, reading the behavior as possibly antagonistic, took offense to the behavior he saw in Matt and said, “Fine, be that way!” in an angry voice, and walked away. Remember where we were. There was a lot of confusion that day, and a lot of emotion in that waiting room, compounded by the stress each family member was feeling. Although I understood how such a reaction could come about it didn’t change the fact that for Matt, it was too much and that particular interaction scared him tremendously. His self worth was instantly scarred.
Not long after, Duane tried to get back in touch with his boys and for my older son it was a welcomed step forward. For the past few years now they have been in contact with each other and once a year near Christmas time, Duane even travels 1000 miles just to visit - good for him. Unfortunately, year after year he does not see his youngest son, Matt. Why? Because Matt said “no”.
For Matt, just the knowledge that Duane was close brought immense fear. He wanted nothing to do with him. It’s not like I haven’t tried to help him, but every time I brought up Duane’s name Matt went into fear mode; pacing, rubbing his legs, shaking, eyes cast downward. My only recourse was to do what my youngest son needed me to do. He needed me to stand strong and keep him safe. He needed me to say what he couldn’t - tell Duane “no”.
Now I’m sure it must have appeared to others that I was the mean ex-wife standing in the way of renewed father-son bonds, but I simply didn’t care what other people thought. Matt needed me to protect him. I had promised him I would. So even though my oldest son and Duane were now speaking and getting to know each other, my youngest son would not even attempt it. He remained firm in his decision to stay away and I backed his decision . . . every single time. I remained steadfast in my promise to protect him, because Matt, in his fear, seriously needed me to do just that.
Meanwhile, I had some investigating to do. You see, I wasn’t sure where the fear came from. Was it the 2-dads thing? Was it the “stranger” thing, or was it the interaction – that one simple interaction, that was at the root of this fear? I would love to say I figured it out immediately – but I didn’t. It took several years. So many questions had to be asked. Matt is mostly non-verbal. It’s not like we sat down and had a nice long conversation. I had to watch his body language, ask just the right questions, and pick up on thousands of non-verbal cues before I finally figured it all out.
Once I knew the source of the fear I had to figure out how to heal the wound. How does one state something like that to their ex without hurting their feeling along the way? But hurting the feelings of others aside, the real goal here was to get rid of the fear my son carried. There was no personal agenda – just a very strong desire to help Matt overcome a terrible fear. He needed to be free of the fear that haunted him every time Duane’s name was mentioned, and in addition, his big brother needed to be free of that “in the middle” position he was continually put in. Christopher wanted to know his dad –of course he did. But he also wanted to keep his brother happy and safe. It was an awkward situation for him to be in, to say the least.
It looked like this year would be no different. I told Matt that Duane was coming down to see Christopher and asked him if he wanted to meet him. Matt immediately said “No!” I changed the subject and life went on. Recently, Matt has been transitioning to a place of his own and he has had enough on his plate without me forcing him to face his worst fear . . . or so I thought.
Then just after Christmas I happened to run into Christopher while I was in town. He told me he had a Christmas card from his dad for Matt and it contained a gift card to Game Stop– a much loved place to buy games for Matt. I thought about this….. it rambled around in my head and wouldn’t go away. This might be just the right incentive for Matt to meet Duane. A gift, a bit of shopping, and the coffee shop was right next door – so I would be there if he needed me. Hmmmm……..
I told Christopher I would bring it up with Matt, and we could possibly meet at the coffee shop. We could then take it from there. Now …I had to tell Matt that he would see Duane. How I did and when I did were big factors in the possible success of such a meeting. I decided to tell him just before we went so that he would not have time to work himself into a frenzy …. At least, that’s what I hoped. I went over to Matt’s new apartment and he happily met me at the door –ready to come back to my house for a few days. I asked him to sit down, we needed to talk.
I told him about the Christmas card. I told him about the gift-card inside. I asked him if he could meet Duane to get it. He immediately went into fear mode. His hands rubbed his thighs over and over in an “Oh God, oh God” type of stroke. His eyes went immediately to the floor. His legs were shaking, his hands were shaking - he was intensely afraid.
“I will not let anyone hurt you”, I explained, “and I will be in the coffee shop right next door until you come back. Christopher will be with you in the game store and will not leave your side. No one – absolutely no one – can hurt you.”
The thigh-rubbing continued,
“Will you do this to get your present?” I asked.
“Ummm” he tossed the idea around, but he shook his head “no”– not even for a gift-card.
“Would you do this for your brother?” I asked. Yep, I brought out the big guns – using his love for his brother. I explained to him how his brother was in the middle and how uncomfortable a place that could be. I explained that in doing this one thing he could make his brother smile. A frustrated “Ugh!” and a nod of the head and I knew he would at least attempt it.
Next, we practiced the meeting a few times - me playing the role of Duane handing him a card and guiding Matt in how to reply, “Thank-you for the card”. In the anxiety of the moment he would not be able to speak unless he had a practiced line waiting. “10 minutes, Matt – just 10 minutes.” He looked at me, “10 minutes? Oh, OK, 10 minutes” and off we went for the historical meeting of Matt and Duane at the local coffee shop.
We arrived first. I practiced 2 more times with Matt as we found a couple chairs free next to the door. Christopher walked in alone.“Where’s your dad?” I inquired. “He’s just outside, waiting to see if it was OK”. Great! That signaled to me that he was prepared to go slow, take it one moment at a time…. Good for him. “Tell him to come in.” Christopher waved him in and suddenly there he was. Matt amazingly held his ground. His legs shook slightly. “Hi Matt”, Duane said happily as he handed Matt his card. As practiced, Matt opened the card, read the words, and then admired the gift-card. He politely said “Thank you”. Now it was time to actually step away from me and go with them next door. Matt’s eyes met mine. He was putting his trust in me - that all would go exactly as I had told him it would. “Christopher is with you, Matt.” I reminded him softly. He looked over at his brother as if to check– yep, still there – and allowed his brother to take control. Christopher happily escorted Matt out. Duane kept a smile on his face. OK, so far, so good.
I sat down, adjusted my coat a bit and took out my phone. I had just dialed Tom – my husband – when Matt came back in.
“Done already?” I asked.
“Yep!” Matt replied.
Christopher was laughing, explaining how he had walked in the store, grabbed the first 2 games he saw, paid and left. Done and done.
“Well, how about we sit for a minute and visit?” I asked. Matt waited to see where Duane sat down first before taking his own seat – one as far away as possible. I sat next to Matt and patted his leg. We each asked Matt some questions, helping him to speak, helping him to shift his mind onto other things and when it looked as if he was a bit more comfortable, I suggested to Matt that he show off his new apartment. “You can ride with me Matt, and I will stay with you.” Matt hesitantly agreed. On the ride over I explained that it would go fast – just a quick tour. His brother would be there and nothing bad would happen. “Nothing bad, Ok, Ok, Ok, Ok” he chanted on the short drive over.
Matt did show off his apartment. His brother was great at keeping the conversation happy and lighthearted. Duane did a great job in doing the same. Christopher bragged on his younger brother’s artistic abilities, his music collection, and his wonderful successes. Duane marveled at all of it and happily told Matt how proud he was of him. Matt relaxed a little more with each gesture, with each affirmation of his worth. He held his head higher. He stopped shaking. Upon leaving, Matt said his good-byes and started toward my Jeep. “Matt, remember to shake hands.” I whispered toward him. Shaking hands is one of the things he has been practicing all his life, but has always needed a reminder to do. He turned around and promptly stuck out his hand unafraid. “Bye!” he said happily as he shook Duane’s hand. It was over. Matt hopped in the Jeep.
As we pulled away Matt turned on the radio and began to sing. He was happy again. “He wasn’t so scary, was he, Matt?”
“No!” he replied happily.
Matt had just conquered a fear . . . a really big fear. Upon arriving home I had a message from Duane that in all that had transpired he had forgotten to get a picture and asked if he could get one the next day. “Matt, would you mind going to Christopher’s house tomorrow so Duane can get a picture of both you guys?”
“Sure!” Matt replied happily . . . no big deal. Yep. Fear is abating. Confidence is returning. Mission accomplished.
We did get that picture the next day. It took all of 10 minutes and Matt smiled for the camera. He stood tall. He wasn’t afraid of this guy anymore. What happens from here on out is anybody’s guess. Will he revert back to being fearful again next year? Will he need to face that fear again? Not if I remind him of what he did this year. Not if Duane continues to show a smile and speak in soft, lighthearted tones. Not if he realizes now that the principle emotion in autism is fear. If Matt feels safe he will continue to make progress and it’s up to us all to make sure he does feel safe – every single day. The severity of his autism means he will always battle his fears. But parenting a child with autism means you need to hunt down those fears and pull them out into the light of day . . . where, just like opening your eyes after a bad dream and seeing the rising sun – they melt away into nothing.
When trying to understand the mind of an autistic individual it’s the one thing you absolutely must comprehend – that fighting their fears is something they have to do every day. Their courage keeps them moving forward. If you are a parent of an autistic child take a deeper look. That child standing before you, twirling, flapping, lining up their toys, or maybe watching the same show over and over, is the bravest person you will ever meet. And if you don’t see it? Well then, obviously you’re just not looking deep enough.