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:

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:

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:

– 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:

It’s an enlightening video. Agree?

Candid Interview

I was honored to be interviewed by Special Needs Book Review about what it felt like growing up as the sibling of an ASD older brother, why I chose the name “Fisheye Books,” and how I try to stay current with the ever-evolving self-publishing world.

Here are the first 3 questions and answers from the interview.

Interviewer: “Fisheye” is her nickname. Why? We might find out in this interview with Trish Thorpe, author of two books: Fisheye: A Memoir and Asperger’s Sibling Support: 15 Practical Tips for Parents/Caregivers.

Welcome to our interview series! In your guest post I read you grew up in the 60’s and 70’s and had an older brother (by two years) who had undiagnosed Asperger’s syndrome. Please tell us about your childhood and what being the sibling of an undiagnosed brother with Asperger’s was like.

Trish: In a word, lonely. I was constantly trying to figure out how to get my parents’ attention without upstaging my special-needs brother. I was also constantly trying to figure out what I was doing wrong. I remember always feeling alone. It was not a good upbringing.

Interviewer: “Fisheye” a word you use often. Your website is and your books are Fisheye Books. Please elaborate.

Trish: Because I lived inside my head so much while “growing up” and rarely relied on my parents for support or advice, I learned at a young age to look at “the big picture.”  My dad was a television director and therefore familiar with camera lens terminology. He’s the one who dubbed me “Fisheye.” A fisheye lens projects a wide-angle view. A good example is the peephole in your front door.

Interviewer: Tell us about Fisheye: A Memoir. When was it published, how many pages and what years and aspects of your life does it cover?

Trish: My memoir was published in October 2012 and is 210 pages. It was a grueling writing process, but I’m really glad I did it. I learned so much about myself and about what has happened in my life so far and why.

My life has spanned a wide range of subjects. Everything from growing up in Hollywood, to having an alcoholic mother and a narcissist father, to drug addiction and recovery, to raising an LGBT family in the suburbs in the 1990s, to helping a parent die who was never there for you, to being an ASD sibling. That’s just a start.

As I was writing Fisheye, I rediscovered my passion for writing, which inspired me to write more about being the sibling of an ASD brother and what would have helped me feel loved and supported at the time.

You can read the full interview here:

A writer who won’t give up!

It was mid-January. I routed my road trip through the southern part of the country to avoid encountering a potential storm. Going over the Rockies to get from Santa Cruz to Denver wasn’t going to happen. I mapped out my route on Google Maps and drove from Santa Cruz to Barstow (CA) to Flagstaff (AZ) to Santa Fe (NM) to Denver (CO), and booked cheap/safe hotels along my route. It worked well. I only encountered minimal roadside snow and the hotels were exactly like what the pictures depicted on the Internet.

I borrowed a few audio books from the library, thinking I’d have plenty of time for uninterrupted listening while driving through four states. I picked a classic (Flaubert), a biography (Isaacson), and a comedy (Sedaris) to try and keep things light. Hah!

I ended up not listening to any of my audio books. There was so much going on in my head that I never once got the urge to listen to someone else’s (published!) thoughts. (My own thoughts do keep me company, but honestly, sometimes I wish there was an OFF SWITCH!)

You’d think that my thoughts would have been admitting to myself (again):

“OK Trish. You’re not going to become an instant millionaire. Doh! Lower your expectations!”

But instead, I pre-occupied my mind with trivial things like:

“Did I pick the cheapest/safest hotel (for whatever pitstop I was approaching)?”


“I hope my room has a microwave for the Trader Joe’s frozen dinner (in the ice chest on the passenger seat next to me) that I picked for my meal tonight.”

More salient thoughts occurred too, like wondering why I was on such a blind-ambition, frantic mission to get to Denver and Hillary as soon as possible. (I didn’t figure it out till months later.)

I also remember not ever seriously considering relying on “those other skills” (20 years as tech writer/intranet manager at Hewlett-Packard) to generate income once I landed in Denver. I hated being a corporate drone.

Before I left on my road trip, Hillary asked me to send my resume. I did and she suggested using some IT connections that she had in Denver for potential job leads. I politey responded, knowing in my heart that IT work for upper managemenet really wasn’t what I wanted to do anymore. It made me SO unhappy and I was SO determined at this point in my life (I’m 53) to pursue something that felt right (er, left).

When I finally got to Denver, astonishingly, Hillary and I re-connected right away. The elapsed decades since we’d last seen each other (30+ years) didn’t seem to matter.

A “special” endorsement…

I’m honored to have received an endorsement from Special Needs Book Review. Here’s a sample of the first few paragraphs:

“Siblings of children with special needs often say it is difficult growing up in a family where one child, because of his challenging needs, takes so much of their parents time and energy. Most parenting books about raising a child with special needs include strategies to make the ASD child feel loved, included, and an important part of their family. We were happy to learn of another guide book for parents. This one is this handbook Asperger’s Sibling Support: 15 Practical Tips for Parents/Caregivers by Trish Thorpe. It provides parents and caregivers with advice for supporting siblings of a child with Asperger’s syndrome.

The author is in her fifties; therefore, unfortunately when she and her older brother were growing up, their parents were not aware that their son had Asperger’s syndrome. You will be able to relate to Ms. Thorpe’s story if you were like many others growing up in 1960s and 1970s with an undiagnosed family member who was on the autism spectrum.

To write “Asperger’s Sibling Support: 15 Practical Tips for Parents/Caregivers,” Ms. Thorpe used her personal experience growing up in the shadow of her Aspie brother and the insight gained from years of counseling she required to sort out the family dynamics.

We thank Trish Thorpe for writing to us about her handbook outlining the importance of parental support and guidance for special needs siblings and agreeing to a guest post introducing her book. We look forward to learning more about Ms. Thorpe as she has agreed to take part in our Author Interview Series.”

Here’s a link to the full post:

I’ll be sure to post next week’s interview here.

Don’t forget about the missing piece…

Asperger’s siblings. Heard enough about them yet? Well they’re still the often-overlooked piece of the Autism Spectrum Disorder (ASD) support puzzle.


So at the risk of repeating myself, and since, unfortunately, I’m familiar with this subject from personal experience, my campaign to make myself heard continues…

For those of you who know someone in an Asperger’s family and/or know someone who is struggling to understand Asperger’s, head on over to Amazon and download my FREE ebook (it’s short…20 pages) on Amazon today (4/20), tomorrow (4/21) and Monday (4/22). 

“Asperger’s Sibling Support: 15 Practical Tips for Parents/Caregivers”


IMPORTANT: Kindle-formatted ebooks CAN be read on other devices (laptops, desktops, other ereaders, smart phones, etc). Go to this Amazon page and download the software you need for your particular device: