Grief and autism
Grief can be an overwhelming emotion. It’s a feeling of loss which pulls from both guilt and sadness. It sits deep within us wanting to get out, but we tend to block its path. We hold onto it, playing memory tapes over and over in our mind as we adjust to the change in our life. We understand what a person is feeling who is dealing with grief because of our own experiences with it, but we should not assume we know how each person should express their grief - that is a misconception. Grief, in all its complexity, can not be experienced the same way in any two people. It’s only logical then to assume that a person with autism will have their own way too. My son Matt, who is autistic, has had to deal with grief more than once in his short life of 26 years.
The first time he had to deal with death was as a young child around the age of 9-10. He had a cat named Sweetpea whom he loved tremendously. We also had dogs at that time, but they were jumpy and loud and Matt had little interaction with them. The cat was different. She approached him slowly, made her pleasure known in soft purring sounds and was content to sit near him without annoying him. Unfortunately, having a pet, loving a pet, becoming attached to a pet also means you are willing to undergo the grief that will come when the pet dies. We didn’t think about that when we brought her home. We only thought of the smiles and laughter and the interaction Matt would have with a living thing.
Only a few years had gone by when the unthinkable occurred – Sweetpea was hit by a car. Not wanting Matt to endure the grief, we went ahead and buried the cat, and told him of her death afterward. We were not prepared for his anger. Why did we put her in the ground? She can’t breathe! She is afraid of the dark! He could not be reasoned with and could not be consoled. We did the only thing we could do – we dug her up. After we removed her from her grave and un-wrapped her body we brought Matt out to say his goodbyes. She looked as if she was sleeping and he gently reached over to pet her. His hand quickly pulled away a split second after, realizing from the cold, stiffness of her body that she was indeed dead. Matt and I talked over and over for days afterward. He had questions and sadness and guilt and I did my best to answer him, comfort him and take his guilt away. I learned a big lesson from that experience – never hide the truth, even if you mean well.
Shortly after, we got him another kitten with similar markings and he named her Sweetpea II. Sweetpea II is still going strong at 14-15 years old and still his beloved cat. But someday . . . well, we know what someday will bring.
Over the years I have noticed that Matt deals with an emotional situation very similar to his older brother, Christopher. This really comes as no surprise to me as Matt has idolized his brother his entire life. If Christopher could do something, well then Matt could too. It was this desire to be like his older brother that spurred Matt into overcoming so many obstacles autism set before him. I like to think of them as my bookends of a full life; Matt is the light of my life and teaches me to see deeper, find the simple joys, and live happy everyday, whereas Christopher is my pride and joy and holds within him a clear-cut view of right and wrong. He stands up for what he thinks is right with a tenacious determination and overwhelming presence. I am in continual awe of both my sons.
Emotionally, Christopher holds his grief deep inside. He guards his feelings. They are personal and not up for public review. He thinks deeply and feels deeply, but on the outside he appears strong and steadfast. He will discuss with me his thoughts when and only when he is ready to discuss them, receive comments, listen to advice, or just needs a reaffirming hug. Christopher was only 2 years old when his brother Daniel died. He attended the funeral. He didn’t cry, didn’t seem to know what was going on and I didn’t fully explain it either. Two years later as we were driving to his grandparent’s house Christopher asked me a simple question, “How did Daniel die?” I explained very simply that he was born too early and his heart just wasn’t strong enough to keep going. He thought about that for a minute and then very sincerely suggested, “You can give Daniel my heart and then he wouldn’t have to die.” It hit me like a ton of bricks. My son was willing to give his life for his brother to take away the sadness that I carried with me. How long had he thought about Daniel? How long had he been watching me deal with the grief? I didn’t knowingly cry in front of him, but he knew I still carried that sadness deep inside. This same gift of empathy showed itself repeatedly over the years as Matt grew up. He taught Matt to interact, play games, tell a joke – the list is as long as his life. Christopher had given Matt his heart. In return, Matt looked to his brother on how to act; in the car, at a restaurant, at school, and around others. Christopher never thought about Matt’s focus on him – not until I told him years and years ago. In retrospect, Christopher has always been Matt’s guiding light.
Matt knows this instinctively about his brother. He holds himself to the same standards he has for Christopher. After all, if Chris can do it, then Matt could do it. Both take after me in the need to be alone when grieving. I do not wish to share my grief until I am ready and that may be a while. We are different in that initial grief is tearful for me, (but then I put it deep in my heart and think it over for months and in the case of Daniel, years), but it is not for either of my boys. Neither wears their heart on their sleeve. I realized this when we moved to Arizona. It was to be a temporary move as my husband had several contracts and instead of surviving apart, we all went together; Matt, Tom and I. Christopher was grown and was going to take care of our Virginia home during our absence. Matt seemed fine with the move and all seemed to go well. We took each day as it came, trying to make every excursion an adventure. Matt never cried, never showed that he missed his cat, his home or his brother – that is until we started discussing a more permanent move. Matt broke down and all his fears came to the surface. He poured out his heart and told us he had been crying every night. I had no idea of his inner turmoil. Matt had kept his emotions secret. Not long after this revelation we moved back to Virginia. I had learned a valuable lesson again; Matt would not show his grief. He would be strong (his notion of strength, not mine). I would have to look deeper, even more than I already was, if I were to read that particular emotion in my youngest son.
When we got the call that their grandma was in the hospital we immediately packed and set off for Illinois. Grandma had cancer and had been in remission for such a long time that we were caught off guard when it suddenly returned with a vengeance. She was in intensive care. There were tubes and ventilator noises and it must have been tremendously scary for both boys. Matt did not want to enter the room. He stood by door, taking quick glances toward grandma, and just as quickly turned away. Christopher, the weight of the world evident on his face, walked in without hesitation. I could see Matt’s eyes follow his brother and could almost hear him thinking, “If Chris could do it, then I could do it”, and after a few moments Matt followed him in. How utterly brave he was to go into that room with all its smells and sounds. But he did do it, because his brother did. He knew he was suppose to go in that awful room because Christopher showed him that grandma was more important than the fear he felt.
This brings me to today and the reason behind this story. Our cat, Toulouse died yesterday of feline leukemia. Christopher was a teenager when he found Toulouse, a yellow domestic kitten in a parking lot. When he brought him in we were hit with the familiar line, “Can we keep him?” How could we not? Toulouse soon became Christopher’s best buddy, and spent most of his time on his lap or at his computer. They were inseparable. Unfortunately, when Christopher grew up and bought a house he couldn’t take his best friend, his cat. He feared he would run away with the new surroundings, and knowing how well he was rooted to our home decided to have us keep him. Christopher’s beloved cat instantly became Matt’s favorite of our three. He nick-named him “wild-cat” and loved on him even more than he had before. This was his brother’s cat and he would be honored to take care of him. Matt continued to treat Toulouse like the royalty he was. Matt moved into Christopher’s old room and Toulouse kept his routine of spending much of his time hanging out his same room, only now with Matt.
We learned only a week ago that Toulouse had leukemia. The vet brought him back from the brink of death but explained to us there was nothing more to be done. We knew we would only have him for a short time. I explained this to Matt. Then yesterday Toulouse began having difficulty breathing. He was dying and we had a choice – to let him struggle to the end or put him down. We chose the later. Again, I saw the weight of the world on my oldest son’s face. As time drew near to the appointment I realized both my sons needed time away. I asked Christopher to please take Matt until it was over. Matt knew what was happening and that the time had come. He was relieved to go with his brother. Before he left, Matt got his camera and took a picture of his friend, his beloved pet, then patted his head gently and whispered good-bye. Christopher took Matt to town and we took Toulouse on his final trip to the vet.
Christopher instinctively knew a diversion was needed. He took Matt to get something to eat and then to get a video game - the perfect detractor. When we had buried him we called Christopher and they came back to the house. Matt poured his energy and attention to his new game. He needed to not think, not feel, not cry. His game helped him achieve these goals. Christopher, needing to absorb what had happened, spent a moment alone at the gravesite.
Today, I walked Matt out to the gravesite. He tensed up. I told him Toulouse was buried there, pointing to the large rock that covered the site. Matt took a step back. His eyes moist, he looked but could go no further. I told him that Christopher took a moment alone there yesterday and that when ever he needed to, he could do the same. The tension eased a bit. I told him I would talk with him when he was ready then I changed the subject. He instantly relaxed, grateful not to dwell on it. Matt still has not cried. He told me he will not. He is steadfast. He is doing exactly as Christopher. I am sure they will both cry eventually, probably alone and to themselves. It’s very private and the pain is overwhelming. The waves can only rise to the surface of thought a little at a time. I know, because of experience, that memories of Toulouse will surface time and again and sometimes tears will come and eventually, down the road, a smile. Neither will openly grieve in my presence any time soon. Neither will want to discuss it – not for a long time. I am glad I understand how my oldest deals with grief because it has allowed me to understand how Matt also deals with grief. If I didn’t know and accept these variations on processing grief I would worry about how it is affecting Matt, wonder why he didn’t talk about it, wonder why there were no tears. If not for Christopher, I would not know how to help my autistic son. These are two very empathetic and deeply feeling young men. There is nothing wrong in how they deal with grief – we each have our own way. Matt’s just happens to mirror his brother’s. I know that being autistic does not mean that Matt can not feel the pain of grief – on the contrary, he feels too deeply for words. It does mean that I will watch and wait and exercise patience. I will be ready for when it surfaces, and I know eventually we will talk, when the pain is not so intense. Months, maybe years from now, we will talk about this beautiful, wonderful cat and we will come to peace – all of us, in our own time. For autistic and non-autistic alike, grief is the most overwhelming of emotions. Patience and understanding are required of those on the outside. We learn to wait and be ready to lift them up when grief tries to pull them down. As intense as it can be, we are all willing to accept the eventuality of grief. I know that I do because I want…no, crave, the experiences of love and joy.
Matt chooses to enjoy the wonderful lives that enter his own and knowingly immerses himself in the warmth of their love – knowing grief is part of the deal. How amazing is that?