Autism and Empathy

Not too long ago I accompanied my dad to a doctor appointment. It was wet and very cold outside. The parking lot and sidewalk were a bit slippery. As my dad and I were walking into the building a car pulled up, and a very frail, elderly woman got out of the car. She crept slowly toward the front door, one very tiny step at a time. She looked like she might topple over, as she was so unsteady on her feet. I stepped toward her and offered her my arm. She gladly took it. I could see she was not going to make it far without some help, even after we entered the building. I walked her very slowly to the office she needed. She was afraid her husband would not know where she had gone so I walked back to the front doors to let him know she was waiting in the office. I waited for what seemed like a long time. Then, I saw him, slowly approaching the front door of the building. This man was bent and decrepit, walking with a cane. Every step was almost painful for me to watch. I stepped through the doors, back out into the cold, and offered the man my arm. He was just a bit gruff, and declined, indicating he had the cane. I explained to him his wife was waiting at the end of the hall in the office. He thanked me and told me his wife never would have made it without help down the hall. He said he always helped support her if she had to walk more than a few steps. This elderly man was barely able to keep himself upright, and moving as slowly as I’d ever seen someone move, yet he was normally his tottering wife’s support! I walked with him to the office. I chatted with both of the older folks for a few more minutes. As I left, I stopped and quietly urged the receptionist to use a wheelchair to help the woman get back to her car.

I have thought about those folks several times since then and wondered how they are doing. They appeared to be long past the ability to live independently. I hope they are safe and well, and together.

What made me stop and offer my arm to the woman? What made me return to ask her husband if he needed help and then almost physically ache when I saw how difficult it was for him to walk? What made me press the receptionist to help them with a wheelchair? What makes me wonder about them from time to time? It’s a kind of caring concern called empathy. Having compassion for someone and being able to put yourself in their shoes motivates people to stop and help others. Those two elderly people touched my heart. But where does empathy come from? Is it something that we are born with? Is it something we are taught? Does it grow gradually over years, starting small and then building?  

My four boys. They are alike, yet so different.

I’ve discovered a few things about empathy since I started raising kids. One of those things being: how it is acquired. Years ago I might have argued that empathy will not come naturally to children and has to be taught. And then my second son was born. From his toddlerhood on I saw a kid whose heart was tender and caring. He wanted nothing more than to make others happy. If he had a cookie he’d give it away. While I was trying to teach my other children to share, I was trying to teach this little guy to stick up for himself. I remember showing him that he should break his cookie in half and give half away but keep some for himself. He is one of the most caring people I have ever met. But I cannot really take credit. For him, it just seemed to be there from the beginning. My other children did have to be taught empathy and they have all become such caring and wonderful people. It took a little longer for some of the kids to learn to put others’ needs before their own than it did for the others. Being the parent of seven I saw a lot of different personalities and was amazed often at how differently they all learned and needed to be taught. Sometimes I just wanted to “knock” some empathy into them, showing that I myself needed to become quite a bit more empathetic at times.

I said all of the above to finally get to this. One of the characteristics of autism is aloofness, the lack of interest or concern for others. It is also hard for a child with autism to generalize the things they learn. In other words, something a child learns in one situation will not be applied in another setting. So teaching Tate about compassion and empathy has been very hard. I see progress though. He sometimes asks me if I feel better if he knows I have an ache or pain. He has started carrying the laundry hamper down to me when it is full without being told because he knows it makes me happy and it hurts my back to carry that full hamper. He has learned to try to listen to his friends at school when they talk to him because he knows it is important to them. Once in a while Tate offers to share things like cookies with his siblings and that is fairly new. All these things have been taught to him individually. I could not just explain the golden rule to him and expect him to apply it to his life. I have to teach it to him for each scenario I’d like to see him use it in.

Tate will do what he is told usually. He does want to please people. Like most people with autism he is a rule follower. He just has to be told the rules. The hardest part of teaching him to help others is getting him to recognize, without being told, what someone’s need is. Being young is part of it of course. Probably a lot of thirteen-year-old boys would walk right past an elderly woman who could have used their assistance because they do not realize what is needed. But there are many things Tate should have mastered a long time ago that he still struggles to understand.

For example: For years we have worked on the etiquette that surrounds doorways. It just seems to come naturally for his classmates to catch a door that is about to close and then hold it for the next person to grab. I don’t imagine anyone has ever had a door holding lesson for any of those kids. Instead they were taught to be kind and polite as a general rule and have begun to care for those around them and they act on those feelings throughout their day. They would never consider letting a door slam on a classmate. They can think about how that might feel and empathize with the one behind them.

When Tate comes to a door, if another person is holding it, he just squeezes through, never reaching to help with the door. If he approaches the door at the same time as another person he never offers to open it. He waits for them to open it for him. If he did have it open and another person was right behind him he’d just let it fall closed. He wouldn’t wait for them to reach out and grab it and he certainly wouldn’t hold it open for them. It is not that he is UNKIND. It is just that he does not think about being KIND. It does not seem to occur to him. Tate’s teachers and schoolmates have worked with him on this type of etiquette a number of times over the years and so have I. I remind him lately in the mornings before he exits my car to hold the door for the student behind him when he enters the school building. So, he has started trying to calculate his entry into the building so no one is around him at all. He slows his pace if someone else is walking up so he won’t have to try to figure out which of the etiquette rules applies. All these things that everyone else learns easily are still a mystery to him.

Tate might be able to quote the golden rule, but he needs to be taught how it applies in every situation individually. And he won’t just learn it by example. He has to be taught with direct instruction. We can teach him to hold the door for someone, teach him to share a package of cookies with his siblings, teach him to be attentive when his friends at school are talking to him, and teach him to take turns with a video game, but when a new situation comes up, one he has not been taught about before, he probably will not step up and behave as if he cares about anyone’s interest but his own. There will be literally hundreds, maybe thousands of things he will need to be taught. It becomes more evident to me every day.

This morning, my husband and I went out for breakfast. We finished eating and were just visiting when my husband noticed there were a lot of people in the lobby waiting for tables. So, instead of lingering at the table, making others wait longer, we jumped up and gave up our table. That is not something anyone had specifically taught us as children. We do it because we want to be kind and compassionate. We want to treat others the way we would want to be treated. Empathy comes naturally to us now. We have generalized that golden rule to all situations throughout our day. Can you imagine what it would be like if you could not generalize the things you learn in one situation and apply them to another? Can you imagine what it would be like if you had to be taught what was expected of you in every situation you might run into? Can you imagine what it would be like if your family were constantly becoming exasperated with you for not doing the right thing when you do not even know what the right thing to do is? People with autism are not necessarily rude or uncaring. Sometimes they appear rude or uncaring because they just do not know what is expected of them nor can they figure that out based on similar experiences. And so I teach empathy. And I explain empathy. And I have empathy for the one I am teaching empathy to. He is like the elderly lady I helped down the hall in so many ways, and I am like the man. Tate needs my support and guidance to make it a short distance, yet I am wobbly on my own proverbial feet at times. I can drive him right up to the door of empathy and I have to hope others are there to offer him their arm or even a wheelchair and help him make it down the hall. 

You might also like: Kindness and Mistletoe
And.... I wrote another blog post expanding on the door thing: It's not that complicated!

Ten Ridiculous Questions and My Facetious Answers

I am the mother of seven children. I love having a large family and cannot imagine my life any other way. I have been asked a lot of silly questions over the years. Here are ten of the most frequent ones.

1. Are they all yours? Yes. Yes they are. I gave birth to six and adopted one of them. I claim them all. Once in a while a neighbor kid gets mixed in and I get a little confused when I count heads though.

2. Do they all have the same father? Believe it or not, complete strangers have asked me this question. It never fails to amaze me. And yes. Yes. I've been happily married for thirty years now. The oldest is twenty-six.

3. Are you Catholic? No. I am not Catholic. I’m pretty sure all religious groups allow married couples to reproduce.

4. Were they all planned? I’d really love to talk to you about the origin of each one of my children’s lives but that would be kind of weird. And, the kids are standing right here listening.

5. You must homeschool, right? Ummmm. No. We don’t. Not that there is anything wrong with that…. 

6. How do you feed them all? Well, my husband works and brings home a paycheck and then I go to the grocery store. But we only have six plates so they have to take turns… 

7. Are you done? Well of course I am done. Who in their right mind would have eight kids? That is just a ridiculous number of children. I cannot imagine how we would be able to feed them all.

8. How can you afford seven children? We can’t. We will still be paying student loans off when we are in the nursing home. Got any spare change?

9. How do you keep them all straight? Give me a break. There aren’t a hundred of them. Only seven. I know their names and their ages. I even know a few other things about each of them too.

10. Do they fight? They do occasionally fight. They are siblings. 

Stepping Up to the Challenge

It is often said, “If you meet one child with autism, you’ve met one child with autism.” meaning each child is unique. I say, If you meet one autism parent then you’ve met one autism parent.” We are not all alike. Just as our children with autism are on a spectrum, so are we. Our children are unique, yet similar, and we are too. Some of us handle the stress and strain a little better than others. Most of us give it our best because we are motivated by a powerful force. Love.

Some of us have children with huge handicaps, while some of us have children who function at a much higher level. Some of us have children who never learn to speak, while others have children who do. Some of us deal with sensory meltdowns and others do not. Some of us have more than one child with autism, while some of us have only one. Some of us have enough money to do all the recommended therapies and some of us do not. Regardless, most of us step up and do the best we can, with what we have, to help our children meet their potential.

I occasionally hear, “God only gives special kids to special people.” Yet, there is no list of requirements needed to qualify to have a child born with autism. Children with autism are born to ordinary people every day. We have no credentials or qualities that make us stand out. Our little ones are fed, changed, rocked, cuddled, sang to, played with, taught, tickled, read to, and loved. We do all the things other moms and dads do and then we hear the word “autism” from a doctor.

When our children receive an autism diagnosis, often around age two or three, we do not suddenly become more special on that day than we were the day before. We only step up to the challenges we are faced with, just like any loving parent would for their child.

My thirteen-year-old son has high functioning autism. He can talk but he cannot have long conversations. He has a lot of anxiety. He is developmentally about eight-years-old and will probably never be able to live independently. Some days I feel a little sad about it but mostly I do not. He is a great kid with a super personality. I try to concentrate on the things he can do instead of the things he cannot.

People often say to me, “I don’t know how you do it!” or “You are amazing.” and “I’d never be able to do the things you do.” I always respond with, “I do it because I have to. You would be able to do the same for your child.” 

I had lunch with a dear friend yesterday. Her son has low functioning autism. He cannot talk. He does not sleep much at night. He is an escape artist and cannot be left alone for even a minute. Some days my friend feels a little sad about it but mostly she does not. Her son is a great kid with a sweet disposition. She tries to concentrate on the things he can do instead of the things he cannot. After hearing some of my friend’s latest stories about her son, I heard myself saying, “I don’t know how you do it! You are amazing.” She responded with, “I do it because I have to. You would be able to do the same for your child.” Of course I would.

The Transition to Public Special Education

Tate is having wonderful experiences at school. He likes school and that is so important. But that has not always been the case. Once upon a time, he cried almost every morning before school. School was very stressful for him. He had a lot of needs that were not being met. He could not communicate his needs. Anxiety ruled him. It was hard on him and it was hard on our whole family. Because when Tate is unhappy, we are all unhappy.

When Tate began kindergarten he had come straight out of early intervention. He began Applied Behavior Analysis (ABA therapy) before his third birthday and we aimed for forty hours a week of discrete trial. Incidental teaching was used throughout every waking minute, trying to turn his whole day into one learning experience after another. We were trying to “catch him up” to his peers and get him kindergarten ready. We did the ABA with experts in the field of autism and the price tag was huge.

I knew there might be some issues with the public school immediately. One reason being-- I had called the public school and inquired about their preschool program. I also asked about the district’s ability to provide Tate with some services for our in-home ABA therapy program. The voice on the other end of the phone told me if I had determined ABA therapy was best, I had been reading all the wrong books. I knew ABA therapy was the ONLY research-based therapy at the time. So my first impression of the special education director and the program was not good. I did not contact the school district again regarding Tate’s education until he was ready to start kindergarten. We had an IEP meeting so Tate would begin school with paraprofessional support. It was evident from our first meetings the special education providers and I were not going to agree on what an appropriate education for Tate would look like. It did not get better for a long time. I had set my expectations high and I was sorely disappointed. I was also shocked. Tate has five older siblings and I had NEVER had any complaints in the past about our children’s education. I had a lot to learn about the difference between general education and special education.

Tate at his early intervention program

I had a lot to learn about the difference between private early intervention and the public school’s special education program too. There were few similarities. When I had questions about autism or challenging behaviors while Tate was in early intervention the staff had answers. Those first few years of public education I saw little evidence the ones providing Tate’s services understood autism.

We had some unforgettable experiences those first few years of public education. When Tate was six, one day he used his pencil to pretend. He pointed it at his paraprofessional and said “pow pow.” The para mentioned this to her supervisor. That teacher took Tate to the principal’s office. She asked if the incident should be reported to the police as the school had a zero tolerance for threats. Tate was six. He has autism. He was holding a pencil. And he was made to feel like he had done something bad. In his early intervention program it would have been celebrated. Pretending! Object Substitution while pretending! This was huge! The autism expert from Tate’s early intervention program would have written me a note or called me to tell me the great news. In the public school setting he was taken to the principal. Luckily the principal was a very reasonable man. When he told me about the incident he was smiling and assured me he never even considered making that call to the police.

Tate at Kindergarten

One phrase I heard often when I made a request for a service was, “We’ve never done that before.” Social skills coaching on the playground was one of those things they’d never done before. The argument against it was that Tate needed free time on the playground to do whatever he wanted. He would have paced and stimmed. I did not want those precious teaching opportunities wasted. The consultant / advocate I brought with me to our meetings argued for the coaching. In an effort to convince me Tate did not need coaching on the playground, the school district brought in their own autism consultant. The plan was for her to observe Tate for a few hours and then give some recommendations. (My own consultant had worked with Tate for years and knew him well but they wanted someone to observe him for a few hours and make recommendations.) I asked if I could be present to hear the consultant give her recommendations when she was through with her observations. Even that was a point of contention, as some did not seem to want me present. Thankfully, the principal called me and told me when the meeting was about to convene and I lived one mile from the school so I was able to get there and hear firsthand what was said. I will never forget what I heard or the looks on faces that day. That consultant agreed Tate needed playground coaching. AND she recommended even MORE social skills coaching than I had asked for be incorporated into his school day. I smiled all the way home that day. The suggestions made by the district’s consultant were not implemented in full but I am quite certain they would have gone with her advice had she said Tate needed LESS services. No one argued with me about the playground coaching much after that. For every battle I won though, I lost two.

We fought many other battles as well. I asked for Tate to receive a warning before he was to have a substitute teacher. I understood it would not always be possible and I know sometimes people become ill right before school begins. However, if a teacher had scheduled an absence and I could give Tate a warning before he walked into a room with a stranger in charge, it made a world of difference to us at home. Tate’s anxiety level after having a substitute was often high. I asked. I begged. I demanded. This became a real problem and no matter how many times I explained the need it did not seem to matter. General education teachers would willingly tell me when they were going to be absent. But the special education staff rarely seemed to be able to get me that information. The time that mattered the most was once when Tate had a gift to give a special education teacher before the holiday break. He took it to school two days before the break only to find a substitute. The secretary told me the teacher had scheduled time to be off long before that date. He was so hurt. If the goal was to show me who was “in control” then I was shown. Often. There was nothing I could do. I saw over and over that one person could ruin Tate’s day and ruin our evening. One person.

Para professionals and I often had to communicate in secret if we had information we wanted to exchange because I was not allowed to talk to my child’s paraprofessional without their supervisor present. I know what you are thinking. It was a ridiculous rule. It was a hindrance to everyone involved, especially my kids. I was told I could not even say, “There is a Chapstick in Tate’s pocket” to the paraprofessional. The special education director could not be moved no matter how many times I appealed to her. Despite the rule, the paras and I found ways to communicate when it was in Tate’s best interest. On two separate occasions I received phone calls at home in the evening from two different substitute teachers I’d never met. Both had been subs for Tate’s para. Both wanted to tell me something that had gone on at school they felt I should know about. Both had been told they were not to talk to me. They did anyway. Not that I was able to do anything about the problems they discussed with me though.

I came away from that first experience with my district’s special education department disheartened. It has taken me years to recover and be able to fully trust my children’s IEP teams. We have wonderful teams now and are very satisfied. The differences are amazing. My faith has truly been restored.

I learned some really valuable lessons and made some valuable observations those first years.

1.     One person can make or break a child’s education. One person.

2.   When your special needs child is miserable at school, the whole family is affected.

3.   The words “Promote independence” are spoken with a smile by educators, but those words are code for “reduce services” and a parent should not be fooled. Of course everyone’s goal is for a student to become independent, parents included. But not prematurely and not to save the district money.

4.   If the school wants to amend the IEP to “promote independence” and promises the services being reduced “can always be added back in later,” it will take an act of Congress to get those services back. Parents should not allow themselves to be coerced or pressured into signing anything amending their child’s IEP to reduce services.

5.   The law says a child’s needs must be met. So, in theory if there are ten children who need XX for one hour a day and only one person who can deliver XX, working eight hours each day, the district is obligated by law to hire another XX provider. In reality what I believe happens is the children who needs the XX the most get the XX and the children who need XX the least do not get it, OR the eight hours is split between the ten children. But an additional provider of XX is probably not going to be hired. The law is often ignored but dollars carry a lot of weight.

6.   Privacy policies can be a real detriment to a child’s education and safety. Privacy policies keep substitute teachers and many others from knowing about a child’s disability, needs, behaviors, treatments…

7.   Not every educator is good at his / her job.

8.   Tenure protects bad teachers.