One of my mother’s friends sent me an article from the Washington Post entitled “Autism Can Have Large Effects, Good And Bad, On A Disabled Child’s Siblings” written by Ranit Mishori. I am 18, a senior in high school, and the younger sibling of a 21 year old brother with low verbal autism. In the article, Ranit Mishori shares her life experiences growing up with a younger brother with autism. Mishori ‘s recollections are mostly negative, and she is now a family physician and faculty member in the Department of Family Medicine at Georgetown University School of Medicine. I was struck by her acknowledgement that children are more intensely affected when their siblings have more severe autism. What spoke to me the most was her statement that, “Normal sibling rivalry doesn’t work, because it can never be a fair fight.” This is a fact that isn’t usually stated, and a truth I live with everyday. Even with my parent’s help, it is a constant struggle to maintain my emotions. I am still learning to think clearly so I can manage the autism and relate to my brother in all situations.
In the article, Mishori defined the challenges growing up alongside severe autism. I was stunned to see someone articulate the problems we face every day. For most of my life, autism was defined as hyper-verbal, socially quirky, genius level academic skills, or someone exceptionally talented in art or music. This perception was so common, friends of mine saying they ‘knew people with autism’ were shocked to see my brother’s low communication, echolalia, and OCD. However, unlike Mishori, I have many happy memories to reflect on along with the hardships. I couldn’t help but compare my circumstances as I read her words.
Mishori talked about “missing out on typical family outings, such as movies, restaurants and vacations”. Our mobility as a family has dwindled because of Anthony’s severe echolalia which is very loud, constant, and uncontrollable. It is easier to stay home than deal with the outside world. Not everyone has been patient with Anthony. The stress of trying to keep Anthony’s vocalizations down in order to avoid disturbing anyone outweighs any enjoyment. Loud places work best. My favorite family memories are amusement parks, especially Hershey Park in Hershey, Pennsylvania. Anthony loves thrill rides. The bigger and scarier, the better. My mother taught Anthony to wait in line by forcibly holding him in place for an entire summer when he was 9. She used words they used at school over and over again like “wait your turn” and “stay in line” until Anthony got it. We wait in line to ride like any other family, so it feels normal. It’s also noisy, so we feel more invisible. From far away, no one can tell Anthony is echoing. We have to watch him every second to keep him safe in a crowd. However, the fun outweighs the stress. Knowing there is someplace to relax and connect with my brother makes me feel good.
Mishori spoke about “being embarrassed to bring friends home”. While I was never embarrassed about Anthony, I was wary of letting people into my life. I don’t know how people are going to react to my brother’s autism. Will they be tolerant? Will they be judgmental? Is their perception of autism different from how my brother presents? I am always afraid that I will let someone into my life that on the surface seems understanding, but will mistreat my brother when my back is turned. This fear can be so consuming, that it’s preferable to avoid acquaintances and just be alone. There are only a handful of people I trust will be understanding of my brother and me.
Mishori mentioned “unpredictable and sometimes violent tantrums and outbursts aimed at you”. My brother has never been violent towards me. However, Anthony has had disruptive anger jags aimed at no one. He will scream angry dialogue for hours at invisible characters. It is frustrating and painful for the whole family. I feel helpless during those moments. I get especially angry because my parents have received so little help from the medical community. They have been rejected by so many medical professionals over the years. Even the Head of Neurology at the Medical University of South Carolina, who reviewed Anthony’s case, told them “there are no neurological specialists within the state of South Carolina qualified to help.” My parents didn’t believe that, but they did believe no one wanted to help.
Mishori described “being expected to grow up faster than you may want to, because you need to be the responsible one”. My parents did their best to preserve my childhood as much as possible. Honestly, I feel like I’m in a perpetual state of nostalgia because Anthony still sees me as 6 and him as 9. I did have to mature more quickly than my peers. I need to be stable at all times in order to deal with the autism. We had to work like a team to function as a family. You have to be in control of your thoughts at all times to keep Anthony cooperative and safe. I gave up my turn, and let Anthony have more accommodating, but my parents always rewarded me. For example, Anthony did well at Hershey Park, but he needed transition items all day long. He always needed something new to hold in his hand to cope with the high stim environment. My parents would tell me that if I let only Anthony get little things all day long, I could get one big thing at the end of the night. I looked forward to that. I felt like it was a reward for my patience, and I felt redeemed for my efforts. At the time I didn’t understand what all the fuss was about. I didn’t really understand what autism was. I just knew that Anthony was noisy and disruptive, and I needed to help my parents. As long as I was good to Anthony and respected my parents, everything was good – so I did.
Mishori talked about having “the sense that you come second to your parents, because so much of their time and energy is focused on the one with autism.” I never felt this way. My parents worked very hard to balance their attention between Anthony and me. Granted, the autism was always managed first. There were times I would get overly frustrated with Anthony’s OCD, and my parents would tell me I just had to deal with it. There was more emphasis on teaching me to cope with my brother’s autism than dealing with who was right or wrong. Sibling rivalry didn’t exist, only autism and autism management. The most extreme example of putting my brother first was giving up my room for Anthony. As an art student, my parents gave me the biggest room in our house to use as both bedroom and art studio. Our house had no family room, and Anthony began camping out in the living room and wouldn’t return upstairs. My mom simply wanted to keep Anthony close to her after he had his wisdom teeth out in January, but that lasted many months. It was difficult for everyone. There was no quiet in the house, and it was ruining our quality of life. No amount of bargaining helped. It was only made worse by the critical comments we received from visitors that he was still downstairs. Anthony missed the time when we were little and shared a room together with bunk beds. He kept going to eBay and finding bunks to show my parents. Finally, we decided as a family that I would give up my big room to Anthony. We were given bunk beds so I could bunk with Anthony sometimes. In exchange, I was given the other 2 bedrooms – one as an art room and one as a bedroom. I still have stuff in boxes! I miss my room, but it's nice to see Anthony cherish the moments with me like we are kids again.
Mishori remarked that “These are all fertile ground for building resentment. And then feeling guilty about feeling resentment.” Granted, that is a given in any sibling relationship. Any situation where one child is prioritized over another is grounds for building resentment for the other. For me, I don’t see any point in resenting my brother. Autism is still going to be there when I’m done ranting and venting out my frustrations.
Mishori states that “there is more study of the child
affected with autism than the sibling who lives with autism”. I am honestly not surprised by this. Traditionally, people researching a medical
concern are going to speak with the person affected, or that person’s
parent. In the case of autism, I feel
the sibling perspective is extremely valuable to enlighten the public about the
condition. The sibling perspective is
that of a peer, not a caregiving person a generation older. The biggest reason I want to advocate for
Anthony is because no one wants to listen to my parents. I believe the medical community looks at my
brother as a lost cause. They want a
success story, so they focus their efforts on the very young. Meanwhile, my brother has a normal life expectancy,
and has needs that are not being addressed.
My parents struggle to get help for him, and I feel like a helpless
bystander. The media tends to portray
the majority of people with autism as a novelty of childhood – high
functioning, quirky, and disruptive in a whimsical way. The reality of autism is lifelong impacting
communication, sensory integration, and ability to live independently. Caregiving is necessary into adulthood, and impacts
the family globally. The medical
community should extend their focus beyond the very young and simply treat
patients with autism. Even if the goal isn’t
a cure, it should at least be improvement.
How can the medical community turn its back on people in need? How?
Natalie Palumbo is Contributing Editor for Age of Autism.