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« Left to His Own Devices | Main | Dachel Media Review: Autism Gym, Missing in LA, Desperate for Help »

Mary Conrick's Autism Sibling Perspective: Pain and Laughter

Megnmary
By Mary Conrick

The year I was born, 1995, was a happy but hard time for my family. It was happy because they had a new child in their life, but difficult because their older child began to show symptoms of  Autism. My name is Mary and I have a sister, Megan, with severe autism. I have not really been open about discussing my sister and autism, but now I am beginning to open the doors that were shut for a very long time. I was ashamed, not of my sister, but of her disability. I was ashamed that she gave my parents extra worries and responsibilities, how the kids would laugh at her, and how I am not able to hear her voice and able to talk to her. It’s frustrating all the things that come with autism, so I just would kind of hide it. I hated small talk. The first question that would come up was “do you have any siblings”. I used to change the topic or answer it vaguely. Then, I would ask the person about their life. I would keep asking them questions pertaining to them, not me, until the topic was changed to something totally irrelevant like SpongeBob. I didn’t want anyone to know because I thought they wouldn’t understand. I didn’t want to explain her condition because it was difficult for me emotionally and mentally to talk about it. I would get flustered or cry. The worst part is if I decided to tell them, they would say “I’m sorry”. That doesn’t really help because they didn’t cause her autism and I felt like they were taking pity on my family. Later on, I realized that people don’t really know what to say because what can one say when someone tells you that. It is awful hearing about someone’s struggles and you can’t say “I hope she recovers from her autism soon,” because not everyone is that lucky. When I wouldn’t reveal details about my sister, people would say the wrong things that would hurt more. “Can’t your sister drive you over here?” “Maybe you can be maid of honor at your sister’s wedding. Comments like that hurt more than telling someone about my sister’s condition. Sometimes I secretly wished she could drive me places and I could stand next to her at her wedding. 

It is also difficult to have friends over because you never know what can happen. Autism is spontaneous. Megan could be running around naked, start having a violent tantrum, or have a grand mal seizure. Even though I live with my sister, I still can’t handle these situations fully. When she would become violent or have a seizure, my mom would tell me to go somewhere else. That place would either be in my room with headphones on, a friends’ house, or a sidewalk without a destination. I would sob constantly because not only is she hurting my mother, she is hurting herself. She is violent because of pain she can’t control in her body. She bites her arm until it sheds blood and bangs her head on the wall until there’s bumps. It breaks my heart every time. I wanted to help but, I still ran away because it was the easiest thing to do. There were a handful of times where I had to help with my sister’s violent episodes because my mother wasn’t home. One of her caretaker’s would be at my bedroom door knocking to get my attention. I was terrified to face my sister when she was violent, but I wasn’t scared because looking past the violence, I saw my sister in pain and I just wanted her to feel better and smile again.

I’ve only told you about the negative aspects about my sister and autism. Well, that is what I only thought about for most of my life. I was narrow-minded. If you know my sister, you would know she has the best laugh in the world. It is hearty and contagious and I swear everyone smiles when they hear it. One time, we took my sister to Chipotle and the whole entire time I was concerned about her becoming violent, having a seizure, or having people laugh at her. To my surprise, Megan was in the greatest mood. She wouldn’t stop laughing as her rice fell all over the floor and all the workers laughed too, they laughed with her, not at her. I have never been so proud to say that was my sister, the cute redhead girl with the incredible laugh and a lap full of rice. Megan is non-verbal and I feel like I can communicate with her when she laughs. When we laugh together, I feel really connected with her and we have a conversation. We both have hearty, loud laughs. It must be genetics. All my troubles go away, even my troubles I have with her autism. I am able to see her for only her, not her disability. The gift of laughter has shown me that it can cure anything. Maybe this is why I love making people laugh and have a great sense of humor. Besides laughing our fiery heads off, we also dance to all types of music. Name the genre! Country, pop, rap, R&B, gospel, Christian, and musical, my sister has the CD! I can’t forget Christmas music. In July she repeatedly plays songs about snow and Jesus. She’s such a good person. Most 20 year olds are listening to songs about sex and drugs. Wait, I can’t stay that….one of her favorite songs is “Gold Digger” by Kanye. She’s hilarious.

Before I started college, I couldn’t wait to leave. I was so excited and curious to live without my sister. What would it be like leaving gluten food on the table and not be afraid of her eating it or leaving a roll of toilet paper next to the toilet without the worrying about the whole roll being flushed and clogging the toilet? I arrived at Saint Louis University without any knowledge of living with someone who doesn’t have autism. I didn’t have to worry about being too loud or too selfish, and that made me eager to live on my own. As expected, living on my own, I’ve suffered from homesickness, but I was shocked at the person I missed the most. It was my sister. There was one night I had to walk out of the library because I was reading a section about "Autism and Communication" in my psychology book. I sat on a bench and sobbed furiously. Thank God it was dark outside. Honestly, I just couldn’t stop weeping. I’ve never cried so hard about missing someone or cried so violently in general. The reason I was crying was because I had the urge to talk to my sister. I started bawling more. I can’t talk to her. I can’t call her up and talk about life. I am never able to do that. At that point, I just wanted to see her and laugh with her because that was the only solution to this dilemma. I realized that wherever I end up in life, I will always think of my sister. I can never forget about her. My sister is a part of me, and I can’t run away from it. I love her as much as all the songs ever written in history. No matter how far I move away, I will always come home to hear my sister’s laugh. 

First semester, I was in the “major exploration” program. That is a fancy collegiate interpretation of being undecided.  My problem was I wanted to be a teacher but didn’t know what to teach. I also have dreams of wanting to be a famous comedian/singer/advocate/ TV personality/ writer. I obviously had too many dreams, some realistic and most unrealistic and not of clue of what I wanted to do with that. One day, it just kind of hit me like unexpected golf sized hail. I should be a special education teacher. I always hated this idea. I thought it would be too emotional and difficult to work with kids with special needs because it was too close to home, but that was it! No matter what I do, I will think of my sister, and the best career to be reminded of my sister’s love is this!  This is what I’m supposed to do. This is why I am here. Megan, I wish you were able to read this so you can be proud of me, but I know somehow that you already are. If you are living with someone who has autism, always remember that you impact their lives and they impact you. Don’t run away. 

Mary Conrick is AofA Contributing Editor Teresa Conrick's daughter.

Comments

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Hey John,

That is an interesting post. A very far fetched theory from Prof Frith.
I can imagine it applying to children at the Aspergers side of the autism spectrum, but not children with autism actually like Raymond / Rain Man. They would have still stood out pre-1988!

Hi Vera,

We arrived in Haringey 20 years ago in 1994. There is no doubt that at the time the borough were having to perpetually re-arrange their special needs provision to cope with the new influx including special units. The "Severe Learning Difficulty" school they had did not support autism and the staff were not geared to its needs - nor did they understand them. By 1999 there were in excess of 100 children in the primary school system with ASD and less than 10 in the secondary. I was told in 2009 that entire school system had more than 600 cases but there are no published figures.

In Scotland they collect figures which mirror this level of increase. Oddly enough I wrote about this in my "Rain Man" piece a year or so ago.

http://www.ageofautism.com/2013/01/utter-froth-autism-epidemic-caused-by-the-film-rain-man.html?cid=6a00d8357f3f2969e2017ee6e4fe3d970d#comment-6a00d8357f3f2969e2017ee6e4fe3d970d

John

Mary and Megan - hugs to you both.

Mary, I'm very sorry, I put your sister's name at the top of my previous post.
I apologise, it's early on a Saturday morning here, all the M's confused me!

Megan, what a wonderful piece of writing. You are so open and honest here, there are things you've written that I really identify with.

I am a sibling of two adult autistic men, and I tend to also not tell people (aside from very close friends) much about my brothers. I remember my mother asking me after my secondary school interview, whether I told the teacher about my brothers.
I didn't tell, because I wanted to stop being the girl with two autistic brothers. When you come from a family like mine, so much of your identity comes from your siblings rather than yourself. At 11, I decided I wanted to start school feeling that I was the same as everyone else.

At work now in my mid 30s, I still am doing the same thing. My colleagues don't know my brothers are disabled, like you say it is difficult to talk about without becoming flustered or crying so it's easier not to mention.

It sounds like you have a very deep bond with your sister. I think this is wonderful and I admire you, your sister and the rest of your family for creating a home where this could develop. I haven't been able to do the same with my brothers, although I do care for them I haven't been able to deal as well with the anger and sadness I feel for them, jealousy of others, lots of difficult feelings, and coped instead by just avoiding the family more in my late teens and 20s. I'm trying to rebuild these relationships now although it is hard. I haven't been the good sister I would have liked to be.

This is my first comment here, although I have been reading for a while.
I remain unsure about a vaccine - autism link. Agnostic, rather than atheist or believer. However, I feel that this is the website that most reflects my own experience of autism. Otherwise I have found neurodiversity websites which are so relentlessly cheerful (and dominated by those able to type, with little discussion of life for autistic people like my brothers) that I feel excluded.

I have looked for sibling support websites - I have found ones for children and teenagers still living at home who are writing about very different issues to mine. I've also found websites offering support for adult siblings, but these were not autism-specific and also were very infrequently used.

This brings me to something which I often see asked here - where are all the 40, 50, 60 year old autistic people? I have been looking for the 30 - 40 year old siblings, and while I have seen a few comments on messageboards they are very sparse.

I grew up in the same London borough as John Stone has mentioned here (we possibly knew some of the same people, John, if you were there in the 80s and 90s). I think I was the only person with a family like mine at my secondary school, which would have had around a thousand pupils from across the borough. This is anecdotal of course, I didn't know everyone at the school.

I remember when Rainman was released, we handed out flyers at the cinema with the autistic society my parents were involved with. No one had heard of autism before the film was released, it seemed. Now people at work mention in passing children they know who are affected, I can't believe that there hasn't been an increase in diagnosis.

Anyway, thank you for the post and thank you all for the website.

Mary,
Reading this brought back to me memories of my little red headed nieces and their identical smiles.
I know growing up with a sister with autism has not been easy, but I love how you have found a way to connect with her through your shared laughter.
Maybe the rest of the world could learn a lesson from you.
You have grown into an amazing, insightful, beautiful young woman.
You are very lucky to have two incredible women in your life as role models.
Your ridiculously selfless and inspirational mom and a sister who in spite of her challenges still loves to laugh and dance through life.
Good luck with the new path you have choosen.
And to quote from one of my most favorite movies, "You go find your life, Miss Mary."

Crying my eyes out. And encouraged to take another scary step in a crisis involving my beloved adult grandson with autism. Granny Blue

Mary -
Thank you for sharing this touching article.
You are an amazing sister/daughter/friend.
You have such a huge heart. You are a
Wonderful writer I hope you continue writing too.
Fantastic job. In the words of Sister Michelle,
"Awesome Mary Awesome"
Love you,
Auntie Sue

Mary, I know we communicated briefly last week when you told me about your new major and how your life with Megan had contributed to your decision. Your words here really put it all in perspective. Like many who read your remarks I cried and laughed too. I love you very much and am so proud of your educational decision. It truly must be your destiny. Aunt Sheila

Mary, you your mom and Megan are all so amazing. Your Aunt Sheila and I have always been so proud of all of you for your strength and love. You are wise beyond your years!
Love you sweetie,
Uncle Mike

Mary,

Such a cool post. In our home the sibling is the older brother, born the same year as you. Same story of an unwillingness to share too much about his brother Thomas to new friends. Same story of a sibling who is (was?) aggressive when in pain and rarely wears clothes. Slowly but surely he came to trust that good friends would understand, the ones that were truly friends, and the rest were not worth the trouble.

He also started college, just this January. He even has the same type of "career exploration class" you describe - too funny. He has shared a little with people about his brother as the topic comes up. He still finds it an uncomfortable subject. He has as good a relationship with Thomas as can be expected considering the circumstances. I hope someday he will be able to express how he feels about it all as eloquently as you have. Thank you so much for sharing this. Your mom must be so proud to have two very brave daughters.

Thank you for being so honest and truthful. It is so refreshing. As a teenager at school our greatest desire was to be normal and blend in just like everyone else and not be embarrassed by ourselves or our families. Teachers told me to learn everything as it is no good to specialize. As we grow, we learn the truth that it is the specialists who are respected the most and earn the most. The sheep who conform end up on minimum wage and never object or make too much noise. My brother is schizophrenic and he taught me some very tough lessons at a young age but I wouldn't trade them now for anything. Maybe this is why autism has always intrigued me. So glad to hear you are going into special ed. Your experience, love and compassion will do much good.

Hi Mary,

I'm so glad you felt comfortable enough to share your feelings about growing up with Meg, I've often wondered about this very subject. Your writing was so touching and moving that I was brought to tears several times. Sometimes because I was sad for things you had to experience but more out of joy. As a sister and as I mother of 2 daughters I was touched by the love and bond you feel for your sister. Being Meg's sister has made you stronger and wiser beyond your years. I'm
thrilled you will use all of your experiences and your love and laughter you've shared with meg to make you what I know will be an exceptional teacher:)

With Love,

Sarah Ott

Thank you for writing this lovely, moving article about the precious bond of sisterhood, no matter the situation. And thank you for considering a career in special education; the world needs more compassionate and understanding instructors like you.

Mary,

We have had to survive many hardships in our life together. I am so proud that you have articulated and shared about Meg. The severity of her symptoms have been heartbreaking.

I feel very fortunate to have you both. So happy you have decided on your major.

Love you.

Ma

Mary, what an amazing writer you are! I hope that you can somehow meet others at your college who have siblings with special needs. I think that just as we parents vastly benefit from support groups who really "get it" so do you siblings.

You are a hero in every sense of the word. And your voice needs to be heard, LOUDLY! Thank you for writing this! Although I only have one child and no sibling issues, when you speak for your sister, and you bear witness to the losses and the costs that autism has caused your family, you speak for all of our families. When you speak of the sadnesses that happen because of your sister's affliction, you are NOT saying anything bad about her, you are describing the pain of witnessing a seemingly endless tragedy, punctuated by bouts of hope and connection. . . a roller coaster. . . In this crowd, we understand that. When she dances with you, I imagine and I hope that you see her as she really is, without the autism filtering it . .

For all of you siblings: Please know that it is okay and GOOD for you to enjoy every moment when you are not thinking about autism, and every moment in which you are experiencing a life where it does not dominate. Please remember that it is okay for you to feel joy or sorrow, and to escape when you need to, and return and feel joy or sorrow when you need to as well! And it is okay for you to let the sadness out too. You have been a hero to your famiies because you had to be. But you deserve comfort, and attention, too. You are special, too. Thank you for reminding us.

Mary

Very thoughtful, moving, interesting piece. It shows how our families have been set on entirely different paths from the rest of humanity. How the world sees us and how we see the world can never be the same again - the destiny affects the entire family.

John

Mary, beautiful honest writing. Thank you.

I love the story of Chipotle. The photos of you two together are delightful.

You are just like your mother. Kind and understanding. They are both lucky to have you!!

Thank you, Mary. Beautifully written. There are so many of you siblings out there. I hope that you all will bump into each other throughout the years and be sources of support and comfort for one another. You all have had a hard row to hoe, and that will continue in most cases. Just as we "autism moms" stick together and provide lifesaving lifelines to one another, hopefully you sibs will find such solace in one another, too. God bless you, and your whole family, and I would love to read more by you in the future should you choose to do so :)

Thank you for this beautiful, honest article, which moved me to tears.

Thank you so much for sharing, Mary! You have done such a wonderful and lovely thing for your sister, your family as well as for numerous other families by sharing your thoughts and words here. I look forward to hearing more from you! Your family is so blessed by you, but I bet they already know that. We wish you every success life has to offer!

You're a good sister, Mary.

Mary, thank you for this. Stories about siblings are so important. You're a beautiful person.

Mary, Thank you for writing this openly and honestly. My youngest son often has to be the 'third parent' for his older brother with autism. I have spent almost as much time worrying about him as I have his brother. Will he resent us? Will he run away someday when he's fed up? But as he is getting older, he is showing a special gift of compassion with anyone who is 'differently abled.' It warms my heart. I believe he will also find a career path to help others. God bless you and your family, and may you find the greatest happiness in your career after college. Your resume' has already been written!

Very honest and poignant article, Mary. My son has severe autism like Megan and my non-autism kids are only 13 and 10. But somehow the world expects them to be heros, like heros to the cause and superhuman compassionate and loving. The truth is that their brother can be a royal pain in the butt and also they are just kids- who have their own lives and their own needs independent of autism. Thanks for sharing. Good luck in the future.

Like mother. like daughter--2 beautiful people. I must tell you, Mary, that it was pure joy for me reading this, but I also shed a few tears. To be able to write your feelings down like you have is a gift. Sharing the sibling's perspective is so important for other siblings and I will see that Joshua's brother reads it. I wish you the best in college and your chosen career and know that Meg is blessed to have you for a sister.
Love, Maurine

Mary,

Thank you for writing and sharing details of your life with us. I am going to share your article with my daughter who is also away in her first year of college. Her brother shares a lot of similarities with Megan.

You and Megan are such beautiful girls. I LOVE the pictures you have shared.

Best of luck at college.

Brave Mary thank you for this. I know a certain 13 yr old girl in Cambridge who is going to feel very "gotten" after reading this.

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