Autism Spectrum Disorder (ASD) Sibling Support Handbook (updated Jan. 2015)

The world of the autistic child changes in an instant, and the professional psychology community makes decisions based on that ever-changing world. In an effort to stay current with the latest thinking, I updated my ASD sibling support handbook. My goal when I set out to update my book was to blend the latest discoveries from professional psychologists with my own experiences growing up as an ASD sibling.

The latest Diagnostic and Statistical Manual of Mental Disorders (DSM) now categorizes Asperger’s Syndrome as part of Autism Spectrum Disorder (ASD), instead of as a
separate impairment. I wanted to make sure that the content of my handbook addressed that change.

coverWhile doing research, I learned a new term that I wanted to share: “glass children.” To me, “glass children” is a wonderful visual that can be used to illustrate the see-through existence of the special-needs sibling. I used it throughout my book to call attention to that plight. I learned the term from a TED talk by Alicia Arenas:

https://www.youtube.com/watch?v=MSwqo-g2Tbk

Also, I added a short story called “Spencer’s GIFT.” I recently re-read “The Gift of the Magi” by O. Henry and it reminded me of the challenges of gift-giving. I wanted to write a story that illustrated that same kind of challenge from an ASD sibling’s perspective.

What hasn’t changed is my passion for raising awareness of the difficulties of the ASD sibling. My eagerness to share what I learned from my own experience remains steadfast. Here is a sampling of the tips that I provide in my book that are based on professional research as well as my own experience as an ASD sibling:

TIP #8. Create Personal Space

Your ASD sibling needs to feel entitled to their own belongings and their own private place in the world. This will hopefully reinforce the notion that they are a complete person separate from their role as an ASD sibling.

Find a spot in your home that they can call their own. It doesn’t have to be big. It can even be as simple as a shelf or a drawer. Just something that is solely theirs. Make sure that both your ASD sibling and your ASD child understand the boundaries.

TIP #12. Share a Secret Code

Make it clear that they can come to you with questions and concerns at any time. Take time out to tell them that you’re always willing and available to talk.

Strategize a signal together that can be used to alert each other that something’s wrong when others are in the room. It could be either a specific word or gesture, just so that you use it specifically for these situations. Sharing a “secret code” together will re-confirm to them that they’re not alone.

I do understand that creating a balanced household in a special-needs situation is not easy. In my mind, it’s vitally important to consider the needs and feelings of neurotypical siblings while maintaining that balance. Sharing this blog post will hopefully amplify that message.

Here’s a link to my handbook:

http://amzn.com/B00BPWC5L4

Diary of a Homeless ASD Sibling

My college friends are all in their 50s now, as am I, and most of them are homeowners, as was I. Telling them, one by one, that I’d fallen on hard times and asking if I could stay in their spare bedroom for a few months felt like the right thing to do. Their kind hospitality which usually lasted a few months at a time came with expiration dates. I can’t really blame them though. They had lives of their own to navigate, including grown children coming home from college who needed the spare bedroom.

Fortunately, my last friend’s hospitality has been open-ended. He said that I could stay in his spare bedroom as long as I needed to get back on my feet.  His thoughtful gesture has given me time and space to think about how to move forward with my life and most importantly, how my role as an ASD sibling has colored my descent into homelessness.

My brother is on the milder end of the autism spectrum. His impairment is not severe, but it is significant enough that it effected our growing-up years and beyond. He’s older than I am by two years.

I remember a time when we were very young and my brother’s classmates told him that the following day was “costume day.” He came home from school that day and made sure that our Mom could spend the evening putting together a costume for him. When he arrived at school the following day in full-costume, he was the only one, and spent the day being bullied by anyone who saw him.

My brother also struggled mightily with team sports. I can still envision him looking dejected as he stood outside a circle of his classmates while they were choosing teams. It was painful to watch. My habit of absorbing sadness and keeping it to myself was already pretty well etched into my personality by then, so I kept it to myself.

worried sisterTo add to the “sports” issue, I was the one who ended up with the athletic genes―not a happy surprise to my parents or to anyone else who knew us. Not only was an athletic girl frowned upon when we were growing up (1960s and 1970s), but unfortunately my abilities highlighted my brother’s inabilities, which of course grew into an unspoken wedge between us. It was never formally discussed, but it was definitely the elephant in the room during many “family” occasions.

Despite the potential for a horribly fractious relationship, the bond between my brother and me was tight. I took it upon myself to own part of his plight. When he was bullied at school (by classmates) and also at home (by our father), I felt his frustration acutely. His struggles were my struggles. As his isolation grew, my own sadness intensified. I felt like if I moved forward in my own life, I would be wrongfully leaving him behind. Unwittingly, I became invisible and started feeling like I was “just along for the ride.”

Every year on my brother’s birthday, from the time he was a young boy until now, I go through a mental checklist to make sure he is on the right track. Does he have anyone he considers a true friend? What kind of gadgets (e.g., computer components, remote-controlled flying devices, audio and video equipment) does he have and are they making him feel good about himself? How is he doing with his career? How old is his dog? How will he move forward when his dog dies? Is he too stuck in a routine? Is he exercising regularly? Eating healthy? Does he feel loved? Safe? Is he OK spending his birthday alone? All responsibilities normally assumed by parents.

I fully understand that my descent into homelessness is not entirely attributable to being an ASD sibling. There were plenty of other factors: I was laid off from my job (age 50) precisely when the recession was gaining steam; my son was a senior in high school at the time and as a single mother, my priority was to get him through college; and I sold my home at a time when the real estate market was at an all-time low. The most enduring result of those events was that as time wore on, I was both aging myself out of the job market and simultaneously extending my personality traits as an ASD sibling.

I’ve been to three states in the last two years as a homeless person, imposing on old college friends and acquaintances whom I hadn’t talked to since my twenties. I spend my days looking for work, writing, figuring out my past, discovering what I’m good at, and deciding how to spend the rest of my years earning a living doing something that I enjoy. It has not been a happy journey, but an important one.

Wherever I’m staying, I try to make myself as invisible as possible. I give the homeowner as much space as I can by going to the local library, and by eating, drinking, and using the bathroom as infrequently as possible, while still maintaining my health. I think it’s when I find myself being as quiet as possible so that I don’t disturb the homeowners that I’m most aware of the person I’ve become as an ASD sibling.
transparent sister

I try to blend into the “rhythm” of the household as best as I can―again something that I learned from being an ASD sibling. For example, if one of the homeowners leaves for work at 8:00am, I try to leave the house by 7:30am and sit in my car until the library opens at 9:00am. I usually alternate my visits to various local libraries so I’m not recognized at any one particular branch. Then at the end of the day, depending on the library’s closing time, my intent is always not to return “home” until the homeowners have had a chance to return from work and settle-in for the evening. I feel like that’s the best time for me to slip in unnoticed.

There are more behaviors of mine that have spilled over from my growing-up years: when I go to the grocery store, I swipe my EBT card (food stamps) as quickly as possible at the cash register hoping that a conversation with the checker won’t ensue that might call attention to my plight; I always pick the least visible spot at the library so that as few people as possible know that I’m there; I habitually gauge the homeowner’s stress-level and retreat to my room accordingly; and I feel happy and safe alone for hours in the spare bedroom of whatever home I’m staying in.

Two things that I could never have pondered if my final college friend hadn’t declared his hospitality open-ended. His kindness has given me the opportunity to think long and hard about my future, and above all, to figure out who I am outside of my role as an ASD sibling―something I’d never considered before.

My goal at this point is to let go of useless mental calisthenics like the birthday checklist that I’ve been revisiting for so long. My brother is settled now. He makes a good living as a software engineer, owns his own home, and has become a talented chef. He also has a beautiful dog whom he adores, and who has become an important companion in his life. It’s time for me to concentrate on me.

My brother has been angry with me since I’ve been homeless. He barely speaks to me. I don’t fully know why but I can guess that he feels like I’m no longer there for him. If I could talk to him, I would ask him to please not be angry with me. I would tell him how much I love him and miss him, how important he is to me, and that every day I learn something new about myself because of my love for him. I’d tell him that being his sister has given me the courage to finally figure out where I fit in this world and the strength to start over.

The immediate needs of children with an Autism Spectrum Disorder (ASD) often overshadow the less-immediate needs of their siblings. Hopefully this blog post will be shared and will shed light on some of the often-overlooked challenges faced by ASD siblings. Based on my own experience, I collected a set of tips for parents and caregivers who are looking to ease those challenges: http://amzn.com/B00BPWC5L4

- Trish Thorpe (January 2015)

 

Hyper Holidays and “Glass Children”

The onslaught of the holiday season is, unfortunately for those living in an ASD family, the perfect storm for constant sensory overload. Glitter abounds and meltdowns lurk everywhere. For each member of an ASD family (including parents and siblings), every day from the beginning of Thanksgiving week to the end of New Year’s week can be a daily balancing act.

I’m an ASD sibling and my constant need to discover who/why I am in relation to my brother is never-ending. I’ve been trying and trying to find an engaging way to raise awareness about the needs of ASD siblings. As I was scouring the Internet, I came across a TED talk that highlights the notion of ASD siblings as “glass children.” The speaker in the TED Talk, Alicia Arenas, explains that the term “glass children” is used not to characterize ASD siblings as “fragile,” but as members of the family, who, unfortunately, become “see-through.”

Have a listen: https://www.youtube.com/watch?v=MSwqo-g2Tbk

It’s an enlightening video. Agree?

How to Think Like a Swiss Army Knife

Indie authors need to wear so many hats today. As more and more “writers” enter the rush to find gold, the intensity to publish their own work and be successful salespeople increases daily. Everytime, I learn a new skill to promote my books (a good thing!), I can’t help but feel like a swiss army knife.

First there’s the writing and editing. No small task, and the reason we’re all doing this is in the first place! If we weren’t driven by an urge to write and share…the rest wouldn’t follow.

Then there are the IT skills needed to navigate Amazon, KDP, CreateSpace, and Smashwords (distribution to all major online retailers EXCEPT Amazon). It’s not easy. And if you’re unfamiliar with the IT world, and too broke to hire someone who has the skills (as most of us are), it can be daunting! I use Google to try and find answers to my
problems on forums from users who have had the same problem. Whenever I get to a point where I’m stumped and frustrated, I stop where I am and start again the next
day.

Then the marketing…don’t even get me started. Marketing can eat up hours every day, but the good news is that it CAN be done. Here are the resources I used and links
to “how to” articles that include instructions (step-by-step).

Book Trailer

I’m finding more and more that potential readers respond much more readily to pictures instead of words. So I tried my hand at creating a book trailer. I used Windows
Movie Maker (WMM). It’s free and I’m a PC user so the choice was a no-brainer for me. I found it easy to use. It did have some limitations, but for a free program, I can’t complain.

Here’s a link to a free WMM tutorial that I found helpful: http://www.atomiclearning.com/moviemaker2

I opted to buy a song on iTunes for $1.29 to accompany my video images. I loaded my finished video onto YouTube. All looked good from my laptop, but when I tried to
view it from my smart phone, YouTube wouldn’t let me play it. I figured out that it was because I used a copyrighted sound track. So I uploaded and tested the same
video onto Vimeo and I could indeed play it on my smart phone. So there it sits. I had a blast making it (yes I’m a dork.)

Here’s my book trailer video: https://vimeo.com/82410975

Local Media

I started out thinking that I would only gain a following for my writing by getting visibility in major publications like The New York Times or the Los Angeles Times. Then I came back down to earth and realized that local small-town newspapers are a whole lot easier to ask for and get a book review. So I sent an email request to the town newspaper where I raised my son (and my Labrador) in the San Francisco Bay Area. They said yes right away. I was thrilled.

Here’s the article: http://tinyurl.com/k4lhmxw

I’m still collecting data on how much visibility I gained from the article. Regardless, it made me feel much less tiny.

Online Book Promotion

I’ve gotten the best results (the most book purchases) by using online promotions to readers who are looking for cheap reads. This is the only part of my marketing plan that costs money, but so far, it has produced the best results. Here’s a list of the major players as of today:

I continue to post on Facebook (both personal and business pages) and Twitter and hope for the best, but I haven’t really seen any solid evidence that my posts translate to book sales. I purchased a Facebook “promotion” which did absolutely nothing.

There’s more…editing, cover design, how to target appropriate content markets and days of the week to maximize income…but that’s enough for today.

disclaimer: the information I’m offering here is based on my personal experience. I’m not claiming that it’s applicable to everyone.

The Good, the Bad, and the Lucky Dog!

This post is in two parts.

1. Amazon reviews – new voice for angry people?

I had the unfortunate experience of being on the receiving end of some nasty Amazon book reviews recently. I hadn’t gotten any reviews yet that were anywhere near as negative as the handful of 1-star reviews I got in response to a KDP giveaway of my book “Fisheye.” I felt blindsided.

In my mind, some of the hateful reviews were uncalled for. But I’m the kind of person that if I don’t like something, I keep it to myself and walk away. Apparently, I’m among the minority. I learned a painful lesson.

Art is so personal. The emergence of the Internet and the ability to comment online on anything and everything, in my opinion, has made private art a public discussion. I never expected my writing to incite such vile reactions from readers. It was a harsh learning experience.

2. On a lighter note…

My “Lucky” Dog book is complete and is now available online in both ebook and print book format. I’m hoping that the book’s subject will appeal to a much less caustic audience. Here’s the link: http://amzn.com/0985328886

Enjoy!

New Hope!

I’m just about to publish my next book (“Lucky” Dog) about the berserk but soooo sweet Labrador Retriever that I raised along with my young son.

After reading the list of books I’ve published in the past year (OMG memoir, Asperger’s sibling support, breast cancer odyssey), I realized it’s time to write funny! Thankfully, or not, I have a weird ability to remember every last detail about my life events. So writing about Lucky’s daily comical mishaps, even though they happened about ten years ago, came really easily to me. It felt so good writing about it!

The subjects I’ve written about so far, while genuine, aren’t exactly uplifting. But I REFUSE to write about zombies, vampires, paranormal romance, or anything else
that I know absolutely nothing about. And so, unfortunately, I remain a “starving artist.”

My goal when I started writing and publishing a couple of years ago was to earn a living doing something I love – writing. And since the self-publishing revolution was
taking off at around the same time, it didn’t seem like that much of a stretch to attain my goal. But sadly, that hasn’t been the case so far.

I have NEW HOPE though. I’m hoping that my “Lucky Dog” book will reach a wider audience. Fingers crossed! Will post here as soon my book is on Amazon…

A writer who won’t give up! (final)

continued from August 4, 2013

The fun stuff (cover design, interior images, page layout, etc.) is now complete.

Pink Tea Leaves

Editing is also now complete. Our book has been through three rounds of editing (me), one peer review (Hillary’s friends), and one round from a professional editor.

We also agreed on a final title. We chose the title “Pink Tea Leaves” for a specific reason. When she was a little girl, Hillary read tea leaves with her great aunt and remembers being fascinated by the random stories that could be told from studying sediments at the bottom of a tea cup. As her cancer odyssey progressed, we settled on tea leaf reading as an appropriate metaphor for the unpredictability of the path that she was traveling.

I submitted the cover and interior files to a publisher for placement on Amazon.

“Pink Tea Leaves” now happily sits here: http://amzn.com/0985328843

I’m happy. Hillary’s happy. Reviewers seem happy. All good.

I’m really glad I went through the book writing/editing/publishing process with Hillary. We both learned A LOT.

Next book I think I’ll write about a happier subject. Maybe the “ADHD” Labrador Retriever I raised while parenting my son on my own. He did get himself into some unforgettable predicaments. (the labrador, not my son. Although…)

More soon!