I have heard the MC at different autism fundraisers and other charitable events make similar comments such as “Almost everyone is somehow affected by autism” and “Most people know someone who is autistic.” What if your child was that someone that everyone knew?
My wife and I have three children: our oldest son is 11 years old, our middle son is 8 years old, and our baby girl is 9 months old. Our middle son was diagnosed as autistic when he was 2 years old. As luck would have it, my wife worked as an early childhood special education teacher for several years prior to our son’s diagnosis. People often comment that if someone had to have an autistic child, my wife would be the one best suited for it. She is patient, understanding, caring, and loving.
The same cannot be said about me. The same people who praised my wife would have probably said that if there is one person who should not have an autistic child, it would be me. To say that I was quick-tempered, impatient, and high-strung doesn’t even begin to cover it. Yet somehow, our family has been getting by, through good times and hardship, over the past eight years and counting.
This is a father’s perspective on autism. I have typically maintained a silence or vagueness regarding my thoughts and feelings about my son’s autism. I think that there are a lot of fathers like me who find themselves in similar situations. We were raised to be the backbone of the family and to believe that we should not show doubt or fear. We’ve been trained to bury those feelings and only expose them to our spouses, if to anyone at all. Typically we don’t even talk to our friends or family about our concerns because unless you have an autistic child you simply cannot understand exactly what it is like. I don’t mean to imply that friends and family don’t care. I just mean that they may lack a true understanding of the situation. I have seen judgmental eyes of family and friends and imagine that they blame our child’s behavior on poor upbringing or a lack of discipline. I imagine that they are passing judgment regarding how or why my child can’t use the bathroom, dress himself or be quiet. Once again, I understand that this is not done out of malice, but out of misunderstanding.
Also, as much as my friends try to be helpful about the subject, guys’ advice is usually oversimplified: “He’ll grow out of it.” “Keep your head up.” “It’ll be alright. Rub some dirt on it.” For all these reasons and more I am writing this to let other fathers of autistic children know that they are not alone.
So, with the background out of the way, here is my story.
Today I put my son on the school bus. He was excited and happy to be getting on the bus because he enjoys the ride. The bus pulled up and I walked with him up to the bus door. I said “goodbye” and after a little prompting I received a “goodbye” in return. He then boarded the bus and the bus pulled down the street to turn around. I waited at the end of the driveway and waved to my son as the bus went by (I did this more for myself than for him). He did not wave back. It’s not that he couldn’t wave back or that he didn’t want to. It was that my portion of his routine was over with once we said goodbye and he was now focused on being on the bus. It did not hurt my feelings that he didn’t wave back to me. I understand how this works. He was diagnosed when he was 2 years old so I have had 6 years of getting to know his eccentricities.
This event caused me to reflect on what it is like being the father of an autistic child. My son is 8 years old, but he is around five years behind making him roughly like a 3-year-old. This is just a small list of the challenges that we face each day with him:
- He is considered to be non-verbal. He can request items (“I want a drink”, “I want a cookie”, etc.) or answer yes/no questions, but beyond that he requires prompting to speak and does not engage in back and forth conversation.
- He does not understand personal relationships. He does not have “friends” in the conventional sense. He seems to enjoy other children around him, but he does not feel the need to or understand how to socialize.
- He loves his older brother and baby sister. He shows them affection occasionally but once again does not seem to understand how to maintain an inner personal connection.
- He does not consistently use the bathroom, resulting in him needing to be in plastic training pants or some form of diaper.
- He does not understand that things can hurt him like something sharp or hot, falling, or running in front of a car, so constant supervision is required.
- He does not like to go to bed and can live on less than 3-4 hours of sleep per night, which leads to him occasionally getting up at 2:00AM to begin his day.
- He cannot tell us if he is sick or not feeling well or if/where he is hurt.
- If he were to get out of the house, he could just keep going and would not be capable of finding his way home or asking for help.
My son is in an autism classroom. Although he is technically in the 3rd grade, he is under a “modified curriculum” which means that he moves forward with his class, but his learning goals are very different. My son is still learning the alphabet, numbers, and how to write his name. He receives ABA (Applied Behavior Analysis) therapy twice a week. This therapy reinforces what they teach him in school and is more intensely focused on modifying his behavior to be more “normal.”
Is my son showing improvement? Yes, he is improving a little with each passing year, but as adolescence fast approaches I worry constantly about his future. Will he ever get to drive a car, play a sport, go out on a date, get a job, live on his own, fall in love, get married, and have his own child? It sounds callous, but I feel that I already know the answers to some of these questions and that causes almost suffocating sorrow and guilt.
I feel sorrow because he deserves so much more out of life than what I fear he will get. We all want the sun, the moon, and the starlit sky for our children, but knowing that it may be impossible for your child no matter what you do feels like a weight around a parent’s neck.
Then there is the uncontrollable guilt you feel not only for thinking that your child will have a lesser life, but also for wondering if you may have done something to cause their situation. We’ve all seen the different studies. Was it inoculations? Was it something they ate or something they drank? Was it something we parents ate or drank? Is their autism due to cell phone towers, electrical wires, wifi, or just coincidence?
Then there is the constant worry over what will happen to our children when we, the parents, are gone. As parents we try to provide the best living conditions for our children for as long as we can, but we will not live forever. At some point my son will be the responsibility of his siblings. What strains will that put on their lives and marriages? Thinking about this could drive even the strongest of us to tears. I have sat in my car or office and fought back emotions for years.
Does any of this mean that we give up on our child? No! In fact, it is the opposite. We fight harder and do more to make certain that our child has as much a chance to be successful as possible. We focus on more therapy, more activities, more time together, more understanding.
That, in turn, creates new issues. For example, is all that you do for your autistic child noticed and resented by your other children? Even if your other children understand, it’s unavoidable that they will feel that there are two sets of rules. This has happened several times with my oldest son who sees his younger brother get away with things and get catered to in a way that he never did. He claims to understand, but I know it has upset him on more than one occasion. How do you strike a balance? You walk a tightrope every day, resulting once again in more stress and guilt.
I am not writing any of this for pity or praise. I am simply writing this to say to fathers out there that I know how you feel. I know what you think about. I am sympathetic and respectful of you. I know you love your children and wouldn’t trade them for the world. I also know that when people tell you to have hope, have faith, and pray, it doesn’t console you when you’re changing an 8-year-old’s diaper. I don’t mean to discount hope, faith, or prayer. These are essential just to get through the day. I just understand what it is like to have a pessimistic idea of reality regardless of all the hope and faith you possess.
Fathers, you are not alone. We all feel similar things. Don’t let those feelings own you. Love your children, love your spouse, and love your family and friends. Children with autism do not have an easy road, but they need their parents to get down it.
P.S. To all the mothers of autistic children, please don’t take offense to this letter. I certainly do not mean to imply that you don’t have the same thoughts, feelings, and concerns. I could not do anything without my wife. She is the reason I have made it this far. I simply wrote this from a father’s perspective because I think men are less vocal on this subject and I wanted to give them a voice no matter how small. My thoughts, prayers, and respect go out to all parents of autistic children.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.