AUTISM AND FAMILY RELATIONSHIPS

Samantha McCowan
Interpersonal Communications
Tuesday April 26, 2005

Autism, like any other disorder that affects the entire life of the individual, also affects the lives of the individuals around that person. My brother, Patrick McCowan was born in 1982 and is autistic. In order to fully understand any pervasive disorder or disease, it is necessary to be around people with the disorder and spend time with that person. The facts are helpful, but it is only from experience that an individual can truly begin to understand the depth and effects of a disorder that affects the entirety of an individual's existence. By looking at written statements from Patrick’s parents, siblings, grandparents, and extended family members, the impact that one individual with autism can have on the lives of those closest to him should become clear.

The family relationships with an autistic individual begin forming from birth. Once the parents are aware that their child is not progressing at the speed or in the manner they are supposed to at a young age, questions start to arise. When the questions keep coming even before diagnosis, the grieving begins. As Sue McCowan, Patrick’s mother says, “You have to have faith in God to get you through it all.” It is absolutely normal for parents to grieve when their child is diagnosed with autism. For the nine months leading up to birth and really their whole lives leading up to parenthood, the mother and father have formed hopes and expectations for this beautiful baby they are about to have. Thus, it is natural to grieve the loss of the “typical” child they anticipated.

Patrick’s Uncle David was living in the area during this time. He says, “My heart went out to my brother and sister-in-law in the first years of Patrick's life. They were quietly uneasy when he was slow to reach developmental milestones. Their mood progressed to unspoken despair and anxiety during prolonged searching for diagnosis and treatment, then eventual openness and acceptance, and later a determination to make it work and build a future for Patrick.” Patrick’s mother also said, “You must love your child through and through for who he is, not who he isn’t.”

While grieving the loss of their precious baby boy being disabled was incredibly difficult, grieving the loss of lifestyle that they expected for themselves and their family is also significant. As their little boy started to grow up, their lives would be forever changed. Their expectations of how they would interact with their children would not be the same. Patrick’s Uncle David said, “I once asked Ron what was the hardest aspect of the situation with Patrick. With a lump in his throat he replied to the effect, ‘As Sue has a daughter to relate to, I looked forward to having a son. Not being able to bond to is pretty tough!’ Having a daughter and a son gives me an appreciation of how a father's relationship with each is equally special but uniquely fulfilling. The memory of that conversation makes me appreciate all the more how God has blessed me with my son and how God has used Patrick to produce in my brother peace and the ability to wait on God. God has also used Patrick to unify and develop parts of our extended family in ways no one else could have. I often regard Patrick as God's missionary to our family.”

Ron McCowan, Patrick’s father talks about how Patrick’s autism has affected his life, he says, “It has kept me much closer to home and family over the years. We could not leave him alone. We could not leave him with a typical baby sitter. This has left me with no time or desire for hobbies or to develop close friendships with other men.”

Although Ron clearly loves his son, he knew that his relationship with Patrick, for countless reasons, would be completely different from his relationship with his two daughters. He says, "I know that all of my kids need me, their father, but I also know that Patrick's needs for me will not diminish like my daughters will as they grow up. I am worried for his future. But I have also developed an inner peace and a servant attitude as I am in awe when I realize that God trusted me to be the father of this special kid.”

Although Patrick’s parents had faith, hope, love, and a wonderful family to support them, life with a disabled child can be stressful due to its ongoing nature. In fact, current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events take place such as birthdays and holidays (www.autism-society.org).

Even before diagnosis and the initial grieving stages, the communication difficulties start to become one of the main struggles. “Autism interferes with the normal development of the brain in the areas that control verbal and non-verbal communication, social interaction, and sensory development” (Miller, 14). This is the reason that autistic individuals have difficulty expressing themselves. During the first years of Patrick’s life he did not talk. So knowing what Patrick wants is frequently a guessing game for his parents and those around him. Communication difficulties were and are a struggle, and frustrating for both Patrick and his parents; in many cases can lead to self-injurious behavior and sometimes behaviors towards siblings. However, no matter how frustrating, Patrick’s mother says, “Delight in the small victories, they do add up. Waiting for a big one sets you and your child up for discouragement.” It is clear that from years of experiences, Patrick’s parents have learned how to work through the communication difficulties and hold a positive attitude.

Just as communication is difficult, maladaptive behaviors in autistic individuals can be hardships as well. In many cases, inappropriate behaviors prevent families from attending events together. Furthermore, they can impact the marital relationship because spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence. As Patrick’s father expresses, “A very large percentage of families with special needs children are broken in divorce. I understand first hand how hard it is to keep a positive attitude and stand by the marriage commitment when there is no time or energy to invest in nurturing the relationship with your spouse.”

Just as the communication struggles and the maladaptive behaviors keep parents close to home, many concerns are presented when taking an autistic individual out into public situations. Often times, people may stare, make comments or fail to understand any mishaps or behaviors that may occur (www.autism-society.org). Ron McCowan shares his struggles, “I've learned to not be easily embarrassed or dwell in discouragement. In one incident a couple of years ago Patrick bolted from me and bumped into a lady at Penney's. She made a big scene saying that Patrick attacked her and that people like that should be kept in cages. I got Patrick out of the store and into the car. I cried and prayed to God to give me the wisdom and strength to keep taking him out into the community.” It is not easy for parents to face the negative reactions of the public when it comes to their children.

Furthermore, beyond the communication and behavioral obstacles, finances can be a great challenge for families and in many cases can drain a family’s resources due to expenses for evaluations, home programs, medications, or various therapies. Some families struggle because they are trying to make ends meet with only one parent working while the other stays at home because the care giving demands of raising a child with autism do not allow them to work outside the home.

Yet in addition to finances, the parents of an autistic individual may experience stress when considering future care giving options for their child. Naturally they trust themselves when taking care of their child, but who will be the one to give their son or daughter proper care in the future. For some, a family member such as another son or daughter may be an option or even an extended family member like an aunt or uncle. In fact, some very high functioning individuals may be able to live on their own. However, group homes and agencies tend to be a more common alternative which is often very unnerving for parents to think of leaving their child in the care of people they do not know.

Parental relationships are truly important and play a significant role in the life of an autistic individual. However, sibling relationships in most cases far outlive parental relationships; siblings experience their own relational stressors when living and communicating with their autistic sibling. For some siblings, as was the case with my younger sister Emily, they may experience: embarrassment around peers; being the target of aggressive behaviors; the frustration over not being able to engage or get a response from their brother/sister; and jealousy regarding amount of time parents spend with their brother/sister.

Emily is eleven years younger than her autistic brother Patrick. When she was younger, she would appear embarrassed by her older brother when her friends came to the house. At the same time, whenever Patrick got irritated or upset, he would tend to pick on Emily rather than anyone else. Being female, Emily was very talkative as a toddler. One day, Patrick decided he had heard enough of Emily’s talking, so he put her in the closet, turned off the lights, shut the door, and walked away. This may have added to her frustration of not being able to get a verbal response from her brother. Jealousy was also an issue. Although, there was not much sibling rivalry between Patrick and myself as we are much closer in age, it definitely exists between Patrick and Emily. He was used to getting the attention for the first eleven years of his life. As Emily is the baby of the family, there is a natural fight for parental attention between the two of them, which is actually very healthy. In fact, as she has grown up, her attitude towards her brother has changed. At age eleven, she expresses her thoughts and observations, “Well, he is always on the move and pacing in the hallways. He isn’t always very social, and doesn’t give hugs very often either. But all the same I love him the way he is and I think there would be no world without him. He is so very special and most people don’t understand him, but I do, and that’s the way I like it. I would never want anyone to replace him because he is so special to me!”

My relationship with my brother is quite different than my sister’s. Some typical sibling stressors not likely experienced by my sister include: feeling a need to over-achieve in light of the autistic sibling’s shortcomings; concern regarding their parents stress and grief; and concern over their role in future care giving. Although these characteristics are not some that I would have likely identified when I was younger, I can definitely see how they are all feelings that I have felt and continue to feel.

I have known Patrick my whole life; I’m his younger sister. There are some times when it’s tough to continue reaching out to Patrick when it seems as though my efforts are pointless. When I told Patrick that I was writing a paper about him, he was non-responsive; there was no outward evidence that this paper meant anything to him. I asked him how it made him feel that I was writing a paper about him. He said, "Good." I emphasized the word feel. I tried to explain that feelings were things like happy, mad, and frustrated. He said, "Happy." But, looking into his eyes, he didn't seem to show any emotion that he had any feeling at all about my line of questioning. It was as if I was asking him, "How does it make you feel when you look at a rock?"

The brain of an individual with autism reacts differently to the sight of a human face than “normal” individuals do. In the normal brain, “the sight of the human face activates the fusiform gyrus, a tiny region of the cerebral cortex. However, a brain with autism usually processes this information in the region typically used for perceiving inanimate objects” (Cowley, 46).

As a younger sibling who was close in age (eighteen months apart), there were times when I was growing up that I wondered what it would have been like if Patrick were “normal.” These feelings were present especially when it came to driving, dating, and curfews. But at this stage in my life I know from the depths of my heart that not only would I not want him to be any different, but I could not ask for a better brother. He is the best blessing I could have ever asked for or deserved. When I am having a rough day, he can make me smile when no one else can. He’s got a better sense of humor than most anyone I know. When I return home after being gone for an extended time, he is the first one to welcome me home with a genuine hug and the words “I missed you.” My brother, regardless of his disability, is one of the closest people to my heart. Although there have been hard times over the years, I wouldn’t change one single thing about my brother. Not only do I feel close to him, but I love him with all my heart. Patrick may be “different” but he has more personality than almost anyone else I know.

Clearly each family member who knows Patrick has experienced something different in their relationship with him. His grandparents too, have each had unique encounters with their autistic grandson. Having an autistic grandchild is difficult for grandparents because in most cases they don’t understand or know how to react or deal with autistic behaviors, they just want to play with their grandchildren and "spoil" them to death. Unfortunately, autism prevents them from achieving either of these desires. Patrick’s grandparents have a lifetime worth of input and memories about their unique grandson. He has three living grandparents, each with a different and unique relationship to him.

Dolores McCowan recounts, "After several years of heartbreak in not being able to enter Patrick’s little world, it has been so gratifying to see the progress he has made in his communication skills. He has come so far in the past dozen or so years. When he was 3 or 4 years old and had not spoken a single word, his parents and all us grandparents took a class in sign language in an effort to help us break through the communication barrier. As the grandmother of an autistic child, his disability was hard to accept at first. We loved this beautiful little boy so much, but he could not show affection or even accept a loving hug. We are blessed to have this special young man in our family and to have learned so much from him."

Her husband, Glenn McCowan, Patrick’s grandfather who is hard of hearing has a very different point of view, “I had hoped to get to know Patrick better when Ron, I, and Patrick started to make Toys for Tots for Boeing. Due to my hearing problems I was not able to do that and have always been left out of the picture as far as Patrick is concerned."
Clearly the comments from these two grandparents shows how the communication barrier between them and their grandson dictates the relationship they have with him. Communication is one of the biggest obstacles faced by individuals with autism. Unfortunately, due to Glenn's poor hearing and Patrick's poor speech it is extremely difficult for the two to communicate.

Cleo Tucker, known as Granny to Patrick, had an opportunity to spend a lot of time with Patrick when he was younger, and has yet a different perspective. “There is a very intelligent young man inside the wall which separates him from a lot of activities with other people because of his inability to communicate well in speech. He occasionally erupts in frustration, as most teenagers do. His behavior may be more noticeable, or take a different path, because he does not have the outlet of expressing his feelings easily in words. I know that God is taking care of Patrick, through the insight His Spirit gives to his parents, siblings, teachers; and the love and understanding he receives from our church congregation. I am so grateful that Patrick and his family are a part of my life.”

Beyond the obviously close relationships Patrick has with his parents, siblings, and grandparents, extended family relationships are also important. Currently, Patrick has two cousins who come over twice a week and work with him as his staff. Being his age and his peers, they have the unique and unusual opportunity to spend quality time together which is very uncommon in most families. Dustin McCowan is one of Patrick’s college-age cousins and has known Patrick his whole life, but they have never been close. He’s seen him at holidays and family gatherings, but until he started working twice a week with Patrick he had not had much interaction with him. He describes his experiences, “Normally at my job I do what I have to do then I go home. With Patrick, my family, my blood, I actually care. I am constantly feeling or thinking why did he do that or what does he think of me. What is he feeling right now? It is a whole new world that I have never seen before, I can only go into it with as God as my guide and hope to make an influence on Patrick.”

Dustin’s sister Amy is a recent college-graduate and also works with Patrick twice a week, she describes her experiences and her sentiments, “Patrick is an amazing individual with many amazing talents and qualities. For starters he has the most incredible memory of anyone I have ever known!! He remembers some of the oddest things but the fact that he can actually remember that is amazing!! He remembers things from my childhood that I don't even remember!! For example, he can remember who used to wear glasses in 1984 and he was only 2 maybe 3 years old!!! It's not uncommon for people with autism to have an extraordinary ability or talent and I think Patrick’s amazing memory is his extraordinary ability! He is very competitive by nature; he hates to lose when we are playing games. We have to keep playing until he wins and then he doesn't want to play anymore!! One thing that Patrick does that makes me laugh, even though I shouldn't, is hiding his combs. He has a thing for hiding his combs in places he knows he won't be able to retrieve them, like water fountain vents, on top of the meat freezer at the grocery store, and down drop boxes!! He thinks it's funny and it is but I try not to encourage it!! He is a very routine person and can become agitated when his routine is disturbed. Sometimes when he gets excited about seeing someone he hasn't seen in a long while he won't look at them because he is so excited! Patrick never used to be much into physical contact but now every time I come over and before I leave he gives me a hug!!

I am extremely humbled when I am in his presence. All my petty problems and concerns seem to fade away when I spend time with him. Everything in his world is so simple and structured like I wish it was in my life. He knows what is expected of him. I see so much of the Lord's Spirit in him that I feel like I am closer to God when I am around him. A friend of mine always told me that God doesn't give us more than we could handle. I find it to be a complement that God has chosen to bless our family (the McCowan family) with Patrick. There are so many people out there who don't understand and are so close minded to people like Patrick (which Patrick and I have encountered first hand on several occasions) that it makes me happy to think of all the people in Patrick’s life who love him and pray for him and support him on a daily basis and I feel blessed to be one of them!”

In addition to Patrick’s cousins, his Uncle David had the opportunity to spend time with Patrick on a regular basis when Patrick was younger. He recounts, “Patrick is still limited in how he communicates with others but has come a long way. As Patrick grew, I saw more of what was going on inside of him. For example, he would get very excited when he was told I was coming to their house. He would stretch the patience of other family members by constantly asking, ‘When is Uncle David coming?’ That made an impact on me. It was God's way of giving worth to both of us! After I got there, he would see me then hurry off and busy himself with something. I would go out of my way to greet him, but did not know how to develop the conversation much further. However, it told me he was genuinely glad I was there. I have lived out-of-state for over half of Patrick's life now. I have not been able to see him very often and I am not sure how much he remembers of those times. But I will carry his early anticipations of ‘Uncle David’ coming to his house to the grave and beyond.”

Upon reading the commentary from Patrick’s family members it is evident that Patrick is blessed to have such a loving, caring, and understanding family. Patrick cares very deeply for his family and has his own way of expressing himself and communicating with each and every one of his family members. Some autistic individuals, however, are not so fortunate.

Having grown up with my brother, I have always had a compassion for disabled individuals. So, I applied to work for KETCH (Kansas Elks Training Center for the Handicapped) where I met Jerome. I was living on-site when he moved into the apartment across from mine. Similar to my brother in many ways, Jerome was autistic and had even graduated from the same school as Patrick. One significant difference, however, was that Jerome was placed at KETCH due to a crisis. Instead of living with a family that loves and cares for him, he was pulled out of the home by SRS. Unfortunately, Jerome is not the only one who faces this reality. Many autistic individuals have not been blessed with wonderful family relationships but instead the lack of family. Although Jerome was not accustomed to family situations, I unofficially adopted him and brought him along to family events and holiday celebrations. But it is important to realize that each autistic individual has different and unique family relationships.

In many cases, life with an autistic child is very stressful and does not always lead to a healthy family life. However, families have many resourceful options that can help them to cope with the stress of life with a disabled child. These include: finding a Case Manager who will help to fight to get the services the child needs and deserves; respite care to allow parents time away from their child and time for themselves; or networking with other parents by attending meetings such as the Autism Society of America and their local chapters. Other resources may include financial assistance by means of Supplemental Security Income, a Special Needs Trust, or Family Reimbursement Programs. Some highly recommended personal ways to help cope with the stress include prayer, exercise, deep breathing or relaxation exercises, writing in a journal, keeping a daily schedule of things to accomplish, and individual, marital or family counseling. Although it may seem difficult to cope with an autistic family member, remember the words of Ron McCowan, “More than anything else, Patrick has taught me that God never intended for us to go through life on our own. Patrick keeps me humble. I know I can't be the father that any of my kids need without God's help and the help of his servants. We have been blessed with many wonderful people God has put into our lives who help with Patrick, who pray for us, and who give us encouragement.”

As a pervasive disorder, autism affects the entire life of the individual who has it. To fully understand this disorder or the affects it has on others, it takes direct experience. Words cannot express the affect that Patrick has had on my life. I haven’t known life without him and I wouldn’t want to. Each individual who comes into our life and has any meaning or significance to us has left an imprint on our heart and molded who we are. We have overcome many obstacles along the way in Patrick’s life. As Janna Rollen said, “any little improvement is a victory” (Cowley, 46). Those victories are what we must hold onto. There are going to be days that are tough with an autistic individual. But as Sue McCowan said, “Life can be difficult, but it’s more difficult for your child – quit whining and work to make it better.” When looking at autistic individuals, just as if you were looking at individuals with cancer, heart disease, or AIDS, one must remember to look at the individual, not the disorder. Although there are many people who know Patrick and have spent many hours of precious time with him, his immediate family knows his behavior and reactions in nearly all situations. They have been there through the good times, the struggles, and many other memories. It is the family members that have the opportunity to see first hand the beauty, and experience life with their autistic family member.

Works Cited
Buchalter, Gail. “To Break the Silence.” Parade. 4 August 1996: 12-13.
Cowley, Georffrey. “Understanding Autism.” Newsweek. 31 July 2000: p 46.
Edelson, Stephan M. PhD. “Overview of Autism.” Pamphlet. Center for the study of Autism. Salem, Oregon.
Gittrich, Greg. “Autistic Children hard to identify, harder to treat.” Newsbank. 11 January 1998: 4 A 1-2
McCowan, Amy. Personal Interview. 6 April 2005.
McCowan, David. Personal Interview. 14 April 2005.
McCowan, Dolores. Personal Interview. 26 April 2001.
McCowan, Dustin. Personal Interview. 4 May 2001.
McCowan, Emily. Personal Interview. 7 April 2005.
McCowan, Glenn. Personal Interview. 26 April 2001.
McCowan, Ron. Personal Interview. 23 April 2001.
McCowan, Sue. Personal Interview. 7 May 2001.
Miller, Lynne. “No Rain Man.” Newsbank. 28 January 1996: 14 A 14.
Tucker, Cleo. Personal Interview. 30 April 2001.
www.autism-society.org