Last month I wrote about my experiences growing up as a sibling of autism and how it inspired me to write a children’s novel titled No One Needed to Know. To sum up, I wrote about how my brother and I grew up in the 70s and 80s, before autism was a common diagnosis. My brother is four years older than me, and he was never formally diagnosed as autistic. Only after I graduated college and began working in special education did I (along with my mother who was a teaching assistant in special ed) put the pieces together that he was on the spectrum. It explained a lot. You can read the whole post about it here.
I realize that my tween/teen experiences with my brother being thirty-plus years ago might not seem relevant to young people going through school now. Things were definitely different back then. There was no information about autism or any support for siblings. I think that people weren’t as open-minded about differences in ability back then either. We’ve come a long way in that regard, (although we can always improve in this area).
So, I decided to find some younger people to discuss their experiences as siblings of autism. I was curious about how things are going now. I found three lovely people through Twitter who are advocates for autism and were willing to answer some of my questions. Oli Monks is in his twenties and is seven years older than his autistic brother. Freya O’Horo is seventeen and has two younger brothers five and eight years younger than her, with the youngest being autistic. Chloe Schurr is nineteen and closest in age to her younger autistic sister who is seventeen.
Now, aside from their age differences to mine, all of these people are the older sibling whereas I was younger than my autistic brother. I think that makes a bit of difference in that older siblings are often more protective of their younger sisters or brothers, and not so much the other way around. So, it didn’t surprise me much that when I asked, “Did you ever feel anger/resentment/embarrassment with regard to your sibling?” they all answered that they had not.
Monks wrote that he “felt very protective” of his brother Nicky. He said he wanted to control the social situations with his friends sometimes, but then his brother became popular with his friends and it wasn’t a problem. O’Horo also said she was protective of her brother and “never felt angry or embarrassed by Dian’s autism.” Schurr claims that her sister had some trying behaviors but that they usually happened at home, and she was the one who sometimes broke down at school in front of her teachers because “I didn't want my family to see, I needed to stay strong for them.”
As I mentioned, I never knew my brother was autistic while we were in school. Being younger, I didn’t fully realize that my brother was in special classes and had developmental differences until I was about twelve-years-old. A lot of things suddenly began to make sense to me once I knew. I asked the siblings when they learned about the autism diagnosis and how they handled it. As an early intervention teacher, I know that autism isn’t diagnosed before the age of 18 months, so finding out that a younger sibling is autistic has to be a shock to a kid after two years or so of having this younger brother or sister in the family.
Monks was ten when he learned his 3-year-old brother was on the spectrum. He says, “I remember little things that I’d pick up about Nicky’s development being different to other kids but to be honest I wasn’t very tuned into it growing up and my parents were quite conscious not to tell me too much.” He recalled how excited they were before his brother was born, walking together and discussing baby names. He doesn’t remember when or how he was told. “I just remember that there were things we did to help Nicky with different challenges and that was something I was just used to.” Monks said that during his teen years he sometimes acted as a “3rd parent” to his little brother. Still, the love and devotion to his brother is clear as he repeated several times, “Nicky is the best guy I know.”
O’Horo, like me, was about twelve when she learned her 2-year-old brother was autistic. “At first I wasn’t sure what autism was or how that would affect him but over time I learnt more. I did notice that he was a lot quieter than most kids his age, especially since we have two cousins that are the same age as Dian. He always seemed to be quieter than them and liked to keep to himself.” It made her nervous at first – for him, not herself. “I was worried that he wouldn’t get to do the kind of things Tuán and I do and that he would miss out. Over time you learn that as long as he does the things he wants it doesn’t matter what the world expects him to do as long as he’s happy.” They now share many interests like swimming, dancing, horse riding, and cycling.
Schurr’s little sister was not diagnosed with autism as a toddler. The family struggled for years with her troubling “meltdowns” that teachers explained away as behavioral issues. “In fact [we] were told that it was a family problem and that we should seek family therapy.” Naturally, none of the techniques for changing “bad behavior” worked on Schurr’s sister, and things worsened. “My parents were exhausted and tied up trying to figure out how to keep her calm and to keep her from melting down, I couldn't speak to my sibling for fear of her kicking off, and so I didn't have anyone. I felt pretty isolated and my confidence dropped. My parents tried their best to keep me protected from the trauma and disturbances so I could be me and live my own life but it was too difficult.”
Eventually her parents even separated the family because it was too difficult. Schurr lived with her dad, while her sister lived with her mom. This was the breaking point, and they finally paid for an assessment. “Now this only took 2 months to get the final diagnosis of Autism (high functioning), DCD and Dyspraxia, compared to the 8/10 years it took trying to go through free services.” Schurr’s sister was fifteen-years-old at this point. “At first it didn't sink in that there was actually finally an explanation for the whole situation. It was a relief, and over time I read more about autism and it started to make sense.” The family was able to come back together and begin mending. It has been two years since the diagnosis. “When we didn't have the diagnosis, there were days we just wouldn't speak to each other because I didn't know how to, and I was too afraid that something I would say would cause a meltdown, but now that we have the diagnosis we have finally become closer and are able to talk, hold conversations and go out and have a good time.”
In my book No One Needed to Know, my main character Heidi is dealing with bullying. She sees her brother getting bullied, and then when her friends find out about his autism, she gets bullied too. I asked my interviewees if they ever struggled with bullying. Monks said that bullying was a rare occurrence for him and his brother. “Every now and then you get the odd shallow or ignorant comment. In the past I’d just take it and not challenge it, but now I realize just how important it is to challenge their views and knowledge of what being autistic is really about.” O’Horo told me her brother “can get treated very badly by the public from stares to comments but the worst is when certain family members ignore him or treat him like there’s something wrong with him.” Schurr confessed, “I never really knew whether [my sister] was bullied or not because it's not a physical disability, there was nothing obviously wrong with her, it was inside and she kept to herself. She didn't share her feeling or emotions even if you asked.”
My brother also didn’t share that he was bullied; I only knew because I witnessed it. I put that into a scene in No One Needed to Know where Donald is beaten up by some kids and tells his mom and sister, “I know they got out of the car and said I rode in front of them.” When he’s pushed to explain more, he stammers and begins to break down, unable to express himself clearly. Like Monks, toward the end of the book Heidi decides the best way to combat the bullying is to find a way to teach others about autism and special needs.
All three siblings I interviewed expressed so much pride in the achievements of their siblings in school and extra-curricular activities. Also, their experience with autism has led each of them to find a way to be proactive in autism awareness and advocacy. Monks is a blogger and motivational speaker. His blog Place with Purpose is full of advice and ideas for autistic people seeking jobs or who are already in the workplace. Monk says the motivation behind building this blog came from the fact that his brother is now eighteen and “I want to help him as much as I can to lead the life that he wants to and be as independent as possible. It’s what he wants, and I’ve got a lot of faith in him that we can get there. One of my ambitions with Place with Purpose is to employ Nicky or help him find a great role, which would be amazing.”
O’Horo is still in school herself, but, because of her brother, she has already helped at different early intervention programs and helped with pony therapy. She does charity and fundraising work. “I decided to be an advocate for Autism when I decided to set up my business “All About Autism” as a part of a school project.” Now her aim is to “share as much as I can to other siblings and families to help them in any way I can. I do this through my blog and my books All About Autism and All About Autism Children’s Activity Book.
Schurr has finished her 6th form at school and is now a teaching assistant for a dyslexic student. “I attended a siblings support group to try and give myself a better understanding of the condition and how I could help my sister. At the end of this session the lady running it approached me and asked if I'd be interested in helping her run a couple of the sessions as I had a unique and different story because of the late diagnosis. I had been through a very tough time and it showed people that however hard it does get you can still come out stronger and for the better.” And now she has. I know that she will be speaking and teaching for years to come.
I hope you have enjoyed this insight into a few lives handling autism with love, compassion, generosity and courage. I’d love to know your stories, too, so please feel free to leave comments below. Scroll on down to find links to the blogs and books mentioned in this post.
Learn more about my novel for young readers ages 9-13, No One Needed to Know and read an excerpt at www.dgdriver.com/no-one-needed-to-know.html or pick up a copy at Amazon https://www.amazon.com/dp/069282913X
Chloe Schurr offers advice and support to people who want to know more about autism or being a sibling of autism on her Twitter account. https://twitter.com/askchloeautism