Siblings Perspective: The Forgotten Piece of the Autism Puzzle (pt. 2)
When people ask me “What’s it like having an autistic brother?”, I seem to stumble. The words seem to get lost in translation. To be honest, having a brother who has autism is almost exactly as it sounds. Take your brother, or, if you’ve never had any siblings, imagine living with another person, and make it so that they throw dramatic temper tantrums with acts as if it were a tragedy by Shakespeare. Make it so they embarrass you in the worst possible places you can imagine, and never understand why you’re mad or crying. The truth is, they kinda just make having a sibling suck more than it already does. I know you’re probably thinking “God this kid is being harsh!” but try living with someone with Autism for 15 years and get back to me. Don’t get me wrong, there are times where I love my brother, that I laugh with him and have a good time, but the bad times have outweighed the good 3:1. Autism is what people sometimes call a “snowflake” illness, or that it’s on a “spectrum”, but all of these are just trying to say that every person affected by autism has it different. Trust me, I’ve seen it a lot worse than my brother, but I’ve also seen it better, and although I love my brother for who he is, it’s been really hard for me over the years.
No one is born predisposed to what autism is and how to live with it, but with me, ever since I could remember, autism has been with me. Since kindergarten and on, I knew my family was different. No other kids’ brother needed to go to a special school, or see a special person, or was even called the ironic adjective “special”. All I really remember from those days is just always being frustrated, always having this hate for my brother, for embarrassment for a 6-year-old is the worst thing in the world. At home, I always heard my mom complaining to our nanny that he was throwing another “tantrum”, and at the time I had no idea what this word meant, but boy, would I learn.
The first significant memory that stands out to me nowadays of my confrontation with autism was in church. Like I’ve hinted at before, at this time I didn’t understand the complexities of autism, and now I realize that one trait of autism is that you sometimes can’t understand or pick up cues when things aren’t about you, or in other words, you can’t let other people have their moment. To give you some background, besides my mother who’s “catholic” (and I put that in quotation marks not to mock her, but to suspend irony), my family isn’t that religious. One ominous Sunday morning we were at mass and I was graduating from Sunday school, so I was receiving a bible. On this cue came Street whining and screaming to my mom that he wanted a bible. My mother tried to explain to him that it was I who was graduating not he, but instead of understanding, he pushed her down in front of the whole congregation. I don’t remember much afterward, just that we never went back to church, but I do remember the sheer embarrassment and anger I felt. This seems to be a theme but is ultimately what has shaped my view on autism. My mother cried and all I could do was feel bad for her, feel bad for us that this was how our lives had to be, that he was family and there was no way we could change him.
I have to admit, I was really mean to him, for all I wanted to do was for him to change, for him to be normal, but what is normal? I feel now that normal is such a subjective, able-minded standard held to make those that don’t feel like they are subordinate, but hey, you can’t blame an 8-year-old for not understanding complex social concepts. Despite my revelations, I still get frustrated, still, get embarrassed when he screams in public or makes a scene. I sometimes hit him or scream at him for some sort of peace of mind because, to be honest, I feel helpless. Like there’s nothing I can do to change him. Maybe that’s why I and my other brother have resorted to violence or verbal abuse, or why we get frustrated because we know there’s nothing we can do to change him, and I think it’s the human condition to get scared when we can’t control something. Yes there’s therapy, but I’ve seen him go to so many specialists, and I know that they’ve immensely helped, I mean, he is so high functioning and so social it’s crazy to think how far he has come, but that doesn’t mean it’s all smooth sailing, that just because a few battles have been won, that the war is over, and that’s what still upsets me. To know that he will never have a “typical” life, that he will have to live with this, dare I say, “burden” for the rest of his life, and as his brother I can’t do anything to help him, and that he will have to struggle with all the horrible people who may not accept him or might bully or degrade him for something he had no choice over; I can’t help but feel empathy.
One last story I will tell is when we recently went on a European vacation to London and Paris. Street was very excited for this due to his obsession with both the royalty of London (especially the guards with the black hats in which he has branded as the “Grumpy Guards”) and because we were going to see the Yankees play. The entire vacation Street was being so good, so calm, and yes like always, he has his protests, but what’s new? If all of Street’s boxes are checked off of what he wants to do, he is perfectly content. Then one fateful day in Paris on the 4th of July I interrupted him recording a video on his iPad, and he lost it on me. This battle was fit with fists and screams, and by the end of it, I was terrified. I’m not gonna play full moral high ground, for I could’ve handled it better, but nevertheless, it was scary. It showed me how fast he can switch from doing so well to tackling me onto the floor, and it was a reality check on the ups and downs of his condition. I guess these ticks are what define his disability, but they also juxtapose the good times.
I would love to end this on a good note because I feel despite all of his outbursts and miss-steps, he is still my brother, and I still love him very dearly. I can speak for my family when I say that all of our lives have been changed for the better by Street’s comedic, and most of the time pleasant presence. He has taught me to appreciate my able mindedness, and that if he, with autism, can join the football team, do well in school, and get everybody in the town of Lancaster Pennsylvania to love him, then I can do anything, and that’s pretty cool.
-Charlie Spitzley, Street’s youngest brother.
Siblings Perspective: The Forgotten Piece of the Autism Puzzle (February 2019)
Over the New Year, my husband, Tom and I were invited to join Street and his family on a trip to Singapore and Bali. When my husband and I have traveled with Street in the past, we found that as long as Street was doing what he wanted to do, the trip went well. This trip was different… It wasn’t all about Street. We were with with Streets Mom, Dad, two brothers and another family of three.
I had somewhat of an awakening on this trip, as I began to see how Street’s Autism affected his siblings, particularly his older brother Joe. Siblings of Autistic children seem to be forgotten, but certainly not on purpose. The point of this post is to encourage families to make sure the siblings of Autistic children are heard, listened to and helped if needed. They have a lot of insight, as I discovered in Asia.
Here is what I observed during our trip:
Street is the middle child, with his older brother, Joe, age 18, and his younger brother, Charlie, age 15. For as long as I can remember, Joe had always made it his business to include Street in whatever was going on. Big or small, Joe made sure Street was involved… sometimes, against Street’s wishes. It seemed on this trip, Street wanted to spend the entire vacation in his room, Facebook live-streaming the view from his bed. Joe did not allow him to do that. Joe made sure he ate with us at every meal, swam in the pool/ocean with us and joined us on excursions into the Bali culture. Street always resisted, but on this trip, Joe won every battle!
It is no surprise that traveling with someone on the spectrum is not always easy. Taking them out of their routine, surrounding them with constant stimulus and expecting them to participate in pre-planned activities is no small fleet. Nevertheless, Joe was persistent and insisted that Street be part of everything!
For Joe, Charlie, and many other children growing up with an Autistic sibling, it is a constant balance between wanting to make that sibling feel included, and harboring resentment, knowing how life could be if things were different. It is easy for the siblings of someone on the spectrum to feel forgotten about or less important. Parent’s are spread thin with the balance of constant therapies, specialized treatments and doctors appointments, that it’s hard to maintain symmetry when caring for the rest of their loved ones. During my time hosting a Mom’s Support Group at our agency, it was made very clear the guilt that Mom’s raising children with disabilities feel when reflecting on the impact it has on the rest of their family.
Being the sibling of someone on the spectrum is a hard and thankless job. It is expected that the “typical” children will cater to and ultimately compromise their desires in order to satisfy those of their atypical sibling. For some children, this is an easier compromise than others and I am thankful to say, Street’s brothers handle his disability with grace and patience. Some days are harder than others, but in the end, Street knows his brothers love and would do anything for him.
In high school, Joe wrote a paper touching on life at home with Street. The hardships, the triumphs, and his concern and empathy of how Street had brought very difficult times to his parents. Eighteen year old Joe will now say that growing up with Street as his brother was one of the biggest lessons of his life, and he’s ultimately better for it. He is patient and understanding, even keeled and encouraging. It is not always easy to love despite differences, but Joe is a reminder that it’s possible, and it’s worth it.
Now What? (September 2018)
He got diagnosed with Autism… now what? Should they keep him in the typical preschool where he can learn from his peers, and learn how to conform to a typical environment? Or, find a private, specialized school with professors that aid with his very specific differences and have students that are more like him? This was a big decision with various opinions.
Despite my sister, Kelly, and her husband, Ray, living in a beautiful suburb in New Jersey, they felt their public school system was not the environment they wanted Street to receive his education from; Autistic or not. It was clear to them that given their unique set of circumstances, a private school was the best option, at least for now. After some research, they found the most prestigious institute that New York City had to offer. A private school, working with children who have learning differences; a place where the word “Autism” was not used. The focus was facilitating language and social skills in a small classroom setting where each student received undivided attention. The school was called Parkside.
Although this was the perfect solution to Street’s elementary level schooling needs, my sister and her husband knew this option was only feasible until fifth grade. At that time, a new decision would have to be made for his middle school and high school years. The plan at this time was to cross that bridge when they got to it. Off to private school.
Street thrived in the small classroom environment. There was peace of mind in knowing that speech, behavioral and occupational therapies were offered right at school. But, it seemed fifth grade came very quickly.. Again, Kelly and Ray were left wondering, now what? Where is everyone at his private school going to go? Who would help them figure this out? They consulted with Parkside, who made a few recommendations. One was the Windsor Learning Center, a school for children with learning and behavioral problems. Ultimately, that is where Street went for 6th and 7th grade, as their public school was still not an option.
It was clear almost immediately that this was not the right fit for Street. It may have been for other children, but it was simply not what Street needed. He seemed to regress, and acquire more negative behaviors. At home, he began to engage in fire starting behaviors, became incontinent, started hitting family members when he did not get his way, and seemed unable to regulate his emotions. Unfortunately, the list goes on and on. At this point it was obvious that ready or not, it was time to look for a new school.
After much deliberation and searching, a friend recommended Chamberlain International School, a co-educational therapeutic boarding school in Massachusetts. This was a difficult decision because it would ultimately mean Street moving away from his family. Despite the painful thought of him living away from home, they felt this was the best decision for Street.
After a few short months, Kelly and Ray learned that this school was not the right fit for Street, either. He was surrounded by students who had severe behavioral problems, and followed a curriculum that did not seem to allow him to reach his full potential. However, during his time at Chamberlain, he did learn to do his own laundry and make his bed, important life skills that would not have been learned at this point, otherwise. But, due to his lack of stimulation and academic growth, his parents felt it was not the right place for him. They wanted Street to be around “typical” students where he could play sports, be involved in extracurricular activities, go to homecoming, and prepare to possibly attend college one day. They wanted him to be in an inclusive environment, so he could learn from his peers.
That following school year, Street moved in with my husband Tom and I, and started his freshman year at Manheim Township High School. In my next blog post I will discuss why this was the right decision for Street, and how he has been thriving ever since.
Julie Cornack, M.A., CCC/SLP
Speech Language Pathologist
Street’s Early Symptoms (April 2018)
Watching Street grow up has allowed me to share with you some of the first symptoms of Autism that he presented when he was just a baby. It is important to remember that all children are different, but this was my nephews journey and early symptoms.
Street was a really good baby from birth to about age one. Almost “too good” my sister reports. He slept well, did not cry a lot, and was easily consoled. However, when he turned one, it became a daily struggle just to make him happy. She tried giving him everything, but all he did was cry. His symptoms included, but aren’t limited to, the following scenarios:
- He had difficulty tolerating textures of various foods, and as a result, always spit everything out of his mouth. (orally defensive, meaning not liking things in his mouth – a sensory symptom).
- He would frequently rub his face on the carpet while he crawled ( tactile seeking – a sensory symptom)
- He enjoyed spinning in circles (vestibular seeking – a sensory symptom). When he did this, he would smile.
- He would cover his ears when he heard people talk, or heard loud sounds or music (auditory sensitivity – a sensory symptom).
- His arms would flap when he got mad or excited.
- He didn’t respond to his name or follow directions easily (auditory under responsiveness).
- He knew his letters and numbers at a very young age (hyperlexia)
- He had difficulty transitioning from one place or situation to another. If they were home and Street was playing with something of interest, and suddenly my sister needed to go the store, Street would tantrum to a point of having no control or self regulation. When she tried to put him in his car seat, he arched his back and screamed.
Most of the time, Street appeared joyless and sad, which made the family feel as though they could never please him, or worse, it was somehow their fault. My sister remembers feeling like a failure as a mom.
They enrolled Street in a typical pre-school when he was 18 months old, not thinking anything was wrong. It was there that the teachers reported that Street liked to play away from the other children, was unable to follow directions at the preschool, and did not respond to his name. His play skills were limited, as he liked to throw the toys vs play with them. They recommended an evaluation to determine if Street had Autism.
I look forward to continuing this story in my next blog…
Julie Cornack, M.A., CCC/SLP
Speech Language Pathologist
Understanding Autism Spectrum Disorder (February 2018)
Recently, my husband Tom and I had our Autistic nephew come live with us. Over time, I began to realize that although most people have heard of Autism, only a few know exactly what it is. Despite Autism being talked about EVERYWHERE, people still don’t quite get just what it means to be on the spectrum. Even family members that have been in my nephew’s life since birth, don’t completely get it! Due to this, I feel compelled to shed some light on Autism Spectrum Disorder in my first blog post.
Autistic children have the following problems:
These problems can be mild in one area and severe in another. Each Autistic person is different.
Behavior: They have trouble with self-control, particularly when they don’t get their way.
Communication: They have trouble talking and sometimes understanding speech.
Socialization: They have trouble making friends, starting, and maintaining conversation.
Cognitive: Some struggle to learn and have lower IQs.
Sensory problems: Sensory problems are often the most difficult concept to understand, but play a key role when it comes to understanding Autistic behavior. See my explanation below:
The easiest way I can think to explain sensory problems it is to reflect on the 5 senses that most people know. That being sight, hearing, touch, taste, and smell. When you have Autism, your senses don’t work in the same straightforward way that they would for someone like you, or me. For example, the Autistic individual may not like bright lights because it is painful for them to look at it. Or… they may love lights and seek them out throughout the day. Some may not like loud music because it causes pain in their ears, or they may love loud music and seek it in their daily life. They may not like certain textures of foods because it may cause a painful sensation on their tongue, or they may love how a particular food feels in their mouth and want to eat it all the time.
Something to think about is if you see an autistic person pushing away someone who tries to give them a hug, what does this say to you about their sensory system? To me, this indicates they don’t like to be hugged because it may be painful. It also tells me that their sense of touch is overly sensitive. With Autism, an individual’s senses can be under-responsive or over-responsive, which is what causes unusual behaviors, such as plugging their ears when they hear loud noises or staring into lights/ceiling fans for an extended period of time. My hope is that by recognizing these behaviors, we can connect the dots in society regarding the understanding of Autism Spectrum Disorder.
In conclusion, Autism Spectrum Disorder is a group of symptoms that include problems with communication, socialization, behavior and sometimes intellectual challenges ranging from mild to severe. Each autistic individual is different, thus, a range of severity. While one individual may have mild problems communicating, but have severe sensory problems (covers his ears when he hears conversation or music), another, may not have any sensory problems but have a very difficult time communicating socially (making friends and holding conversations). Just like all humans, each autistic individual is different and presents with a different set of challenges.
Now, when you meet an autistic individual and they have trouble looking you in the eye, or the conversation stops after a simple “hello,” you will know they are not being rude, they may just have heightened visual, sensory or communication problems. In fact, my nephew describes it as “painfully impossible” to look someone in the eyes and say “hello” at the same time. Something we don’t think twice about.
I look forward to telling you more about my life with my nephew. He is fascinating!!
Julie Cornack, M.A., CCC/SLP
Speech language Pathologist