Mental Health Awareness Month: Guest Post from Maggie of The Novel Orange

MHAM

Yesterday’s guest post focused on Elizabeth’s experience growing up with Autism.  Today, we’re continuing to spotlight Autism by sharing a guest post from Maggie of The Novel Orange, who wrote about her experiences with her brother Bill.  Thank you for sharing your story, Maggie! small leaves devider

I have been taught patience, compassion, understanding, and empathy from someone who doesn’t even realize his impact – my older brother, Bill.

Bill is special not only because his is my brother, my only sibling, but because of the hardships he has worked to overcome in his 34 years.

Bill is autistic, more specifically, he was diagnosed with Asperger syndrome, a condition under the autism umbrella, at age four.

Before I share my story of growing up with an autistic sibling, I want to share a few facts about the condition.

Facts About Autism

  • 1 in 68 children and 1 in 42 boys are affected by autism
  • It is among the fastest growing developmental disorders in the U.S.
  • Boys are almost 5 times as likely to be diagnosed as autistic
  • Autism has no cure
  • Among autism’s symptoms are social challenges, difficulties with communication, repetitive behaviors, and other physical and medical conditions that may affect those diagnosed

Facts About Asperger Syndrome

  • Compared with people diagnosed with other disorders on the autism spectrum, Asperger syndrome has been commonly considered to be on the ‘high functioning’ end of the spectrum
  • Behaviors associated with Asperger syndrome include the following:
    • Limited or inappropriate social interactions
    • Repetitive speech
    • Challenges with nonverbal communication skills (facial expressions, gestures, etc.) along with average to above average verbal skills
    • Focus on discussing self rather than others
    • Inability to understand social/emotional issues or nonliteral phrases
    • Lack of eye contact or reciprocal conversation
    • Obsessions with specific, typically unusual, subjects
    • One-sided conversations
    • Awkward movements and/or mannerisms

Bill exhibits many of the above listed qualities. Here are some examples:

  • Bill can be considered high functioning, as he graduated high school and had a full time job for at least 15 years before his condition required him to retire
  • Bill does have limited social interactions, as he does not have friends outside of loving family members and family friends
  • Bill has a tough time reading and understanding the expressions and gestures of others as well as difficulty reading social cues
  • Bill tends to discuss himself when engaged with others; it doesn’t occur to him to ask questions about others
  • I can remember Bill coming home from football practice, he was the team manager, and telling our mom and I things he was told by the players in the locker room; we often had to explain to Bill that the guys were joking with him
  • Bill went through a phase where he was obsessed with his shoe size and growing up to be a big man; he’s had an obsession with Heaven and hell and religion in general for as long as I can remember
  • Concerning awkward movements, Bill actually takes a prescribed medication for facial tics

I am 15 months younger than Bill; I remember being in the grocery store once as children and a lady assumed we were twins. I have always felt that Bill is like my twin; I feel that I have a deep, intuitive connection with him, even though it is hard, even for me, to communicate with him sometimes.

I recall Bill coming up with words and phrases for things that other people didn’t understand, but I always seemed to know what he was talking about and often found myself ‘translating’ for him, and I still do.

For instance, Bill called mud flaps ‘spinnet papers.’ Our mother had no idea what he was referring to, but never asked for clarification until he had been saying the phrase for a while. I always knew exactly what Bill meant; I don’t know why, but I did.

As a child, Bill was just my big brother to me. I was aware that he was different, of course, but his differences from peers weren’t nearly as pronounced in childhood as they were when he started middle school.

I remember him being invited to slumber parties and out with boys in his class until about the fifth grade, when it became painfully obvious just how different Bill was from his classmates.

We went to a private Catholic school (I went from kindergarten through 8th grade; Bill stayed there until 7th grade). My parents made the decision to enroll Bill in the local public middle school after he got in a fight with another student on the playground, which I will only say was very dramatic.

I still find it interesting that Bill was so much more accepted by his classmates when he transferred to a public school. He actually became pretty popular; his female peers were especially kind to him, which was so refreshing.

In high school, Bill was still well known and was rewarded with superlatives, such as Most School Spirit, annually. He even was chosen to participate in our school’s Big Kahuna fundraiser, representing a club, and came in second.

He also attended his prom, albeit without a date, but had a blast.

In recent years, Bill’s mental state has seemed to deteriorate, which is incredibly difficult and frustrating for my family and I. He has become much less verbal and willing to communicate and his obsessions have gotten more intense. He has no hobbies anymore and is paranoid.

I have always wanted to be Bill’s caretaker when my parents can no longer tend to him; however, I worry that I won’t be able to have him live with my own family after more time passes.

I know in my heart that I will do everything I possibly can to help Bill have as fulfilling a life as possible, but I do worry.

At the same time, despite all the hardships and heartbreaks that go along with having a sibling with special needs, I am blessed to have Bill in my life. I honestly don’t think I’d be where I am today or in the profession in which I work, social work, without him.

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Please keep in mind that everyone experiences their mental illness and/or mental health struggles in different ways. One person’s experiences may be different from someone else coping with the same diagnosis. 

The views, opinions and positions expressed in guest posts are those of the author alone and do not necessarily represent the views, opinions, and positions of Book Stacks Amber. The accuracy, completeness and validity of any statements made within this article are not guaranteed. Copyright remains with the author and any liability with regard to infringement of intellectual property rights remain with them.

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