Parents of children diagnosed with autism often feel alone as they search desperately for explanations, guidance, and, deep down, hope. 

But autism doesn’t have to be a lonely, confusing journey.

Dragonfly: A Daughter’s Emergence From Autism . . . A Practical Guide for Parents responds to these needs with stories and solutions that offer a realistic picture of possibilities. Combining memoir with tangible evidence and advice, I try, in Dragonfly, to serve as a trusted companion empowering parents to become staunch advocates for their children.

In anticipation of the book’s release, I want to share how the book originated and reveal some of its special features, which will help parents immensely as Dragonfly finds its way into the parents’ hands who need it the most.

If you’re reading this post and believe that sharing it will resonate with others to inspire awareness, acceptance, and hope, please do. I’d like parents of children with special needs to feel they’ve gained a mentor, a coach, and . . . a friend.

Dragonfly’s Origin

Over a decade ago, my daughter, Hannah (at eighteen months), was diagnosed with autism. I visited a local bookstore desperate to find a book that described what our family’s journey with autism would be like. I also needed to know that the shock, utter confusion, and grief I was feeling was normal. Books have always been of great comfort for me. And at this time in my family’s life, we weren’t comfortable at all with the challenges ahead.

The Book I Needed Didn’t Exist

I also yearned for a book that would educate me on all I needed to know to advocate for the little girl in front of me who would hopefully one day call me “Mom.” I needed to learn about all of the available therapies, familiarize myself with sensory processing disorder, and try to make sense of the medical jargon that was being tossed around by various professionals.

In short, I was looking for a book that described the challenges we were facing with our daughter: no babbling, a failure to thrive, not walking, lack of eye contact, continual hand flapping, touch sensitivity, perseveration on certain objects, not looking when name was called, and more. I didn’t just need answers. I needed hope.

Plus, I felt alone.

Unfortunately, the book I needed didn’t exist. That was disheartening. Later, after discovering a special needs publishing catalog, I found a fictional book about a woman that had a daughter with autism; however, the child was twelve years older than Hannah and their challenges were different. Yet, during the time I spent reading that book, I felt less alone. That helped a little.

Research to Unearth Answers

For more than a decade I have been doing my own research, attending more workshops, conventions, and fairs than I care to admit, speaking with professionals in the field, and using a plethora of interventions and supports with my daughter to encourage her to be as independent as possible.

Three years ago I was fortunate enough to secure a grant that would allow me to tell about our family’s journey. I wanted to create a literary archive so my two children would know about our family’s beginning.

The plastic storage tubs located in our office were filled to the brim with resources on autism, doctors’ notes, therapy notes, PECS (Picture Exchange Communication System) cards, sensory tools, orthotics, and more. I would not be able to toss or donate the items without having a record of them. I felt compelled to preserve the story of what our family had gone through by means of anecdotes and documentation. I was able to complete the draft within the year required of the grant.

Write “That Book”

Then, one Sunday before New Year’s Eve, our pastor asked the congregation, “What are you doing with what you’ve got?” Around the same time, I had shown my manuscript to book coach Ann Kroeker to inquire as to whether or not I should publish? Shortly after both of those events, I decided that what I truly needed to do was to write “that book” I never could find at the bookstore—I would offer to the world and to other confused and frightened parents the resources I lacked in those early stages of helping Hannah.

And Dragonfly was born! Dragonfly is the product of my intense passion to support and encourage parents navigating life’s journey with autism. It’s a parent’s guide to help children with autism maximize their potential.

Dragonfly’s Special Features

I thought through some of the features that would make this book a convenient resource for parents.

Sidebars

First of all, helpful sidebars serve as brief guides for parents looking for answers that address specific concerns. Readers will find easy access useful information spread throughout chapters, such as:

• autism screeners
• early intervention’s benefits
• ways to make a difference for your child
• coping strategies for parents
• caring for siblings’ needs
• useful websites and blogs
• facts and misconceptions
• strategies to foster independence
• tips for holidays and vacations
• educational supports
• ideas for supporting social interactions
• how to encourage friendships
• and much, much more!

Wisdom from the Round Table

Each chapter includes Wisdom from the Round Table, which is advice from parents at various stages of parenting, who have children at different levels on the spectrum.

Their perspectives widen the book’s reach to a broader audience by offering a glimpse into the reader’s future and by representing children whose maximum potential is different from Hannah’s.

This feature was important to me because of the many books I had already read about children with autism, there were only so many similarities that I could relate with. In Dragonfly, I wanted parents to find as many similarities as possible, so they know they aren’t alone with their struggles.

Flashbacks

Flashbacks begin each chapter. These vignettes detail my gradual understanding of autism’s effect on my own family as it unfolded. Throughout the book, you’ll see my evolution from being unaware of my daughter’s autism to an acceptance of her autism and how it makes her precious and like no other child.

Glossary

Parents are bombarded with expert medical and educational jargon used to facilitate conversation in regards to their child on the spectrum; however, the terminology is confusing and autism-specific (not common knowledge).

Understanding this language is essential for a parent to navigate this world of doctors and therapists with greater confidence; therefore, a glossary of terms is provided in the appendices using easily understood semantics.

Foreword

I have learned so much about my daughter from adults on the spectrum who are now using their voice to advocate for the entire autism community. I was honored that bestselling author Jennifer Cook O’Toole agreed to write Dragonfly’s foreword.

An excerpt from her foreword:

Dragonfly is the kind of “keeping it real” story I believe in because Lori knows that “emerging from autism,” isn’t about escaping a life sentence or overcoming a tragedy. It’s triumphing stigma. And ignorance. And judgement. And grief. It’s stepping out of the distorted image the world has of autism, and stepping into the sun. Into the unexpected wonderful that autism can be. She and her work in this book are the embodiment of what I call “relentless positivity.” The kind that chooses to keep going. To be afraid and do it anyway. To inspire by vulnerability as much as credibility.”

Dragonfly’s Multiple Themes

Autism brings complicated challenges to any parent’s life. Readers will find multiple themes running throughout, as I emphasize early intervention, acceptance, and emergence, as your child evolves over time.

Early Intervention

Dragonfly advocates for early intervention. Once parents notice the hallmarks of autism, time is of the essence. The earlier a child receives services, the more pliable the brain to make connections before challenges become even more difficult to overcome.

Acceptance

Dragonfly celebrates an acceptance of autism that I never imagined I could reach. This evolution or transformation is chronicled throughout the book, woven into the story that highlights Hannah’s story.

I thought I could fix or cure Hannah’s autism, but what I found was that I wasn’t allowing my daughter to be herself—and that came at a price. Now the traits that define Hannah’s autism are the qualities I cherish the most about her.

Emergence

That leads to the term “emergence,” used in the subtitle and throughout
the text. Emergence refers to identifying and overcoming some of autism’s challenges that make it difficult to function within our world.

A shared, universal conviction of parents is that we all want the absolute best quality of life for our children, which includes helping individuals with autism become as independent as possible.

The connotation does not at all imply that autism is a dreadful, lurid place that one needs to escape. Nor is Dragonfly offering a cure or fix from autism. I am not suggesting any kind of “recovery” from autism, either.

This book is simply about embracing autism and helping to build the best life possible for our children.

While I don’t want to offer any spoilers, let me say you will find within the first few pages that the inspiration for the image of emerging does not come from me, but from Hannah herself.

Dragonfly speaks to the challenges of a special needs parent while celebrating
how rewarding the journey can be. It will serve as tool for any parent with a child with autism spectrum disorder (ASD).

I hope every reader experiences the joy and freedom of embracing autism as they discover how to build a life in which each family member is able to reach their maximum potential.

Be sure to check out my debut book,  Dragonfly: A Daughter’s Emergence From Autism . . . A Practical Guide for Parents which will resonate with your own family’s journey with autism. Dragonfly can be purchased online on Amazon, Barnes and Noble, Target, Walmart, and Skyhorse Publishing, Inc. websites.

I welcome your comments and questions about Dragonfly—just drop them in the comment section below or contact me. Also, subscribe to our new mailing list below for autism resources, the latest blogs, free downloads, and more information about my upcoming release in April.

Take care,

Lori

Raising a child with autism takes patience—a lot of patience. This virtue has been my daughter, Hannah’s, gift to me.

However, every once in a great while, patience gets thrown to the curb and an “epic Mom fail” happens. While these “Mom meltdowns” are few and far between, they usually end with me feeling as if I’ve let my daughter down.

Except for the last one in the fall of 2017.

The Setting

Hannah was in the seventh grade. I had arrived at cross country practice to pick her up, and she immediately started complaining that her brother, Connor, was sitting in the front seat. She and Connor quarreled for a while. After getting everyone situated in the car, she asked what was for dinner.

“Chili,” I responded.

That wasn’t good enough.

After walking into our home, Hannah refused to get her all her things—backpack, laptop case, violin case, lunchbox—out of the car. That became my job.

Throughout the evening, her behavior didn’t improve one bit. Homework, piano practice, shower time, and our nightly devotional were all a struggle. I had listened to enough. She had set the tone of our entire evening, and I wasn’t going to allow her to behave like this one more time.

The “Mom Fail”

This is exactly when the epic “Mom fail” happened. I had lost my patience. Nothing I could do for her was good enough, nor were my prompts being acknowledged. She did not have the right to speak to me in such a condescending tone!

Right then and there, I looked at her and said, “Since I can’t seem to do anything right for you, I believe it’s time for you to take care of yourself! Tomorrow morning prepare to get ready for school on your own.”

I knew I had to follow through.

I instructed her on how to set her alarm clock to awaken for school the next day all by herself.

I reminded her of the three lists posted in the house that sequenced her morning routine: on the bathroom cabinet door, on the kitchen breakfast table, and on the laundry room door.

I reminded her that her bus arrives at 6:42 sharp, and she would need to catch it because I wasn’t going to take her to school.

As soon as my head hit the pillow that evening, I knew I’d made a mistake. There was no way that she could do this by herself. What was I thinking?

The Morning on Her Own

Her alarm sounded at 5:45. My bedroom is in the same hallway as hers, so I knew I could listen to her every move.

She nonchalantly came into my room and whispered, “I’m up, Mom, and I’m going to get ready.”

Next, I heard her in the bathroom brushing her teeth and opening and closing the bathroom drawers.

I listened to her walk downstairs to her list. The refrigerator was opened along with the pantry door. Could she really be doing this herself?

After listening to her eat breakfast, I heard her scurry to get all of her bags and cases sorted.

The garage door went up, and I heard a “Bye, Mom.”

“I love you very much!” I called out. “Have a good day!” I felt myself smiling.

The Jacket

Did Hannah really complete her morning routine without my help?

I gasped. The jacket! Hannah would be so cold at the bus stop without her jacket!

I always keep an extra in her backpack, but would she remember? I flew down the hallway to Connor’s room, peeked through the blinds, and saw Hannah at the bus stop.

She put down her backpack and other belongings, pulled out her jacket and put it on, and then packed up again! She hopped on the bus, and my phone dinged with her text: “I’m sorry, Mom. It won’t happen again.”

An apology! My daughter sent a sincere, articulate apology for her interaction the day before.

Epic Failure Turns into Stunning Success

A mother’s “epic fail” had turned into her daughter’s stunning success! My mistake led to Hannah’s shining moment. And it spoke volumes about the progress she was making toward independence—on that day, both us realized all that she’s capable of.

So, how did my daughter come this far?

As a single, working mom, it is all too tempting at times for me to do certain tasks for Hannah. I want to set out the clothes, charge her laptop, and pack her lunch for her like I did for years—but that would only hurt her in the long run. In fact, there’s a term for that—”learned helplessness.”

I want Hannah to be confident and independent, not helpless. She will only learn this from the experience of helping herself instead of depending on others.

* * *

Be sure to check out my new book,  Dragonfly: A Daughter’s Emergence From Autism . . . A Practical Guide for Parents, for suggestions on how to foster independence, along with more helpful suggestions, which will resonate with your own family’s journey with autism. Dragonfly can be purchased online on Amazon, Barnes and Noble, Target, and Skyhorse Publishing, Inc. websites.

I welcome your questions, thoughts, and concerns on this topic—just drop them in the comment section below or contact me. Also, subscribe to our new mailing list below for autism resources, the latest blogs, free downloads, and information about my upcoming release in April.

Take care,

Lori

Parents with children diagnosed with autism admit that deciding when and how to tell their child about their identification is agonizing—it’s already so difficult trying to understand our child’s emotions.

It’s easy to see why parents admit discussing sex, money, religion, and drugs with their child is easier than discussing what makes him or her different and why.

Sharing information about autism spectrum disorder in a positive, matter-of-fact, and age-appropriate way helps set the stage for your child’s ability to understand, accept, and adapt to the reality of autism in his or her life.

Stephen Shore, author of Beyond the Wall: Personal Experiences with Autism and Asperger’s Syndrome, advises parents that it’s a four step process:

1. Make the child aware of his distinctive personal strengths.
2. Develop a list of the child’s strengths and challenges.
3. Without judging, compare the child’s strengths with those of potential role models, friends, and loved ones.
4. Introduce the label autism to summarize the child’s experience and disability.

My daughter, Hannah, was diagnosed with autism spectrum disorder at the early age of eighteen months. She presented with all of the classic, hallmark signs of autism, and doctors had no doubt about her identification. Therefore, at a very young age, she was a therapy child consumed in a merry-go-round of intervention including, but not limited to, physical, occupational, speech, developmental, feeding, social/play, aquatic, equine-assisted, and music therapies. Our home’s revolving door confirmed Hannah’s full-time job and my second, full-time job to our neighbors and friends alike.

Because of her treadmill of therapies, she has always been raised knowing she’s on the spectrum. And Hannah has reaped a tremendous amount of benefits because of it. We have never allowed the language of “victimhood” into our vocabulary or allowed autism to be an excuse. Autism is not what defines Hannah, nor is it a scarlet letter that she needs to shed.

Not all families are fortunate enough to receive an early diagnosis. I say “families,” because an autism diagnosis affects the entire family unit and not just the individual. Disclosing to a twelve-year-old that they have autism does require a level of preparation. I also realize that all children with autism are different.

Bottom line is . . . you know your child best. Although I still wish we would’ve had Hannah’s diagnosis earlier, I believe that being open with her and those in contact with her has maximized her success. Your situation obviously cannot and will not play out exactly like ours, but I believe that by reading about the benefits of early disclosure it’s obvious that every child on the spectrum could be empowered.

Early disclosure . . . 

Allowed us to capitalize on strengths and positives while providing supports and tools for challenges and resilience.

Hannah was enamored by space, trains, animals, numbers, and reading. We jumped right into those affinities or passions with her. Her affinities allowed us into her world so we could slowly pull her into ours. Capitalize on your child’s strengths! One day they may turn into a career.

We were also honest with her when there wasn’t two-way communication, and she wasn’t listening to others’ words. That’s when expressive communication was the hardest for her. Cognitive flexibility, with the switching of conversations or thinking about more than one thing at once, continues to be a challenge. However, knowing this builds her resilience with the skill itself. She has learned that executive function (the set of mental skills that help you get things done) is a weakness. Therefore, she now has her own supports with checklists, schedules, calendars, and timers. She has been empowered!

Allowed classmates to be educated on autism to aid in awareness and acceptance.

In each of Hannah’s classrooms, every year, either she or I would discuss autism in general with the class as a presentation. We would begin with a video or children’s book. Over the years, kids have learned to accept Hannah for Hannah. The autism was obvious to me when I had her in my sixth grade math and science classroom; however, when I’d bring it up to her longtime classmates, it really wasn’t an issue that they believe impacted her greatly. That’s acceptance!

Allowed her to find her own voice of advocacy and the power of the autism community.

I’ve always told Hannah that advocacy means speaking up for what you need to be successful. At school, one practical way to do this is to include a list of supplies for each of her classes on the front of the binder. In our home, a list sits on our kitchen table so she has direction when she comes home from school with instructions like: get mail, put garage door down, grab a snack, unpack lunch box, practice violin, and so on.

She corrects people when they say, “You don’t look like you have autism.” Hannah says that autism doesn’t have a look and she’s proud she has it. Hannah has also learned from those in the autism community that have come before her, like Jennifer O’Toole from Asperkids. Having role models in my daughter’s life with autism helps both of us understand and embrace her differences.

Allowed her to participate in friendship groups and social/play groups at school and community centers.

Scripted language, reciprocal language, figurative language, and body language have all been integral to training Hannah on social pragmatics. Having words already memorized and ready to use for interaction lengthened (improved) her time with exchanges. Hannah said that individuals without autism have no idea how much they say without a word even being said and that body language is an invisible nuance to her. Knowing her deficits fuels her resilience!

Allowed her a reason why she was different, but not less.

Hannah has always seen the world through a different lens, and she never had to wonder why. She knew her brain worked differently than others since she was young. To help her understand, I showed her the cables on the back of the television to illustrate a sophisticated discussion of neuroscience, where we discussed how 100 billion neurons making 100 trillion connections leads to sensory overload for someone with autism. Through psychological testing in preschool, it was found that she was at-risk for some pretty heavy emotional challenges associated with autism. So, we have made mental health a priority. Hannah knows that anxiety is the nemesis and the importance of self-control.

Allowed her to provide herself with a sensory diet to regulate her sensory needs.

When Hannah was younger, we provided the sensory diet of the Wilbargar Protocol (brushing therapy), swinging, joint compressions, weighted vest, yoga ball, and more. For sensory modulation these days, Hannah is able to discreetly calm her own hypersensitivities by a leisurely bike ride, Silly Putty, drawing, interaction with her beloved cat, or alone time on her iPad.

Allowed her to know that it was okay to ask questions about the hidden curriculum.

Hannah appreciates rules or a code to give her direction because it’s extremely difficult for her to simply pick up subtle social cues by watching those around her. She has found The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome to be extremely helpful.       

Allowed me the grace of helping Hannah compensate for and embrace her autism as a family.

We “do” Hannah’s autism as a family—there’s no other way if she’s going to be successful. Autism isn’t something anyone can do alone and it’s 24/7. Sometimes we tiptoe around her anxiety; other times we correct her miscues. But we all agree that Hannah is hard-wired to be who she is and our goal is to help her be as independent, well-adjusted, confident, and happy as possible. That may look like helping her to carry out directions in a recipe, strategize the best move during a board game, or keep track of time. She knows she always has our support.

Allowed her incredible children’s literature on her level that discusses autism.

We cherish our time as a hyper-literary family, and this joy of books has helped Hannah fill in some of the questions surrounding her autism. She has found great comfort and pride in the following books on her shelf:

• All My Stripes: A Story for Children with Autism
• Temple Did It, and I Can Too!: Seven Simple Life Rules
• I See Things Differently: A First Look at Autism
• The A in Autism Stands for Awesome.

Our children, despite their diagnoses, have unimaginable potential. Disclosing their autism at the appropriate time and in the most thoughtful way will emotionally scaffold them for making the most of their future.

Your Turn!

I welcome your questions, thoughts, and concerns on this topic—just drop them in the comments below or contact me. Also, subscribe to our new mailing list below for autism resources, the latest blogs, free downloads, and information about my upcoming release in April, Dragonfly: A Daughter’s Emergence From Autism . . .  A Practical Guide for Parents.

Take care in the New Year!

Lori

Hannah enjoyed the sensory modulation equipment at the exposition!

As long as I can remember, my daughter, Hannah, has been enamored by numbers. At four years old, she could count to two hundred before learning to string more than two words together.

I remember her long row of numbered flash cards forming a path across our family room floor straight into the office. The fluorescent number refrigerator magnets were always in perfect rows, and I found some joy in mixing them up to only watch her order them again. 

Other times, while being pushed around our neighborhood in the double stroller with her younger brother, Connor, she would delight in reading numbers on the mailboxes and cars’ license plates.

Strength in Numbers – Those Who “Get It”

Numbers have always given Hannah strength and grounding in a challenging world. And numbers have given me unique, repeated opportunities to enter her world, connect, and interact on some personal level.

I guess I shouldn’t be surprised, then, that Hannah would find a different strength in numbers when she spent four full days in a community of individuals who “get it,” as she says. Almost two months ago she attended her first national autism conference, the Autism Society of America’s Conference and Exposition in Milwaukee, Wisconsin. I was speaking at the conference, as well as other high-profile speakers and authors she would know, so I was eager for her to meet people and listen to their messages.

But I had mixed feelings about her attending the conference, as I knew some topics she was ready to process but others would trigger relentless questions and anxiety.

Having been diagnosed on the spectrum at eighteen months of age, Hannah has always been privy to her diagnosis. Knowledge of her autism has empowered my strong-willed daughter to accept her differences, advocate for her needs, build on her strengths, and adopt unfamiliar, hidden rules of social pragmatics and the necessary tools to sharpen executive functioning skills which can be disabling. She also is aware that autism does not define her, and that only she alone can define herself.

I should have trusted how far she’s come; instead, I went into it certain I would need to monitor her participation and sensor appropriately.

The picture below shows just a few of the connections that Hannah made immediately, which is not the norm for her. This remarkable young group of men and women immediately embraced my daughter. Just look at that smile. She feels as if she belongs.

Chloe Rothschild, Hannah, Conner Cummings, and Maura O’Toole

The evening before the convention began, the exhibition hall was open for attendees who wanted to speak with the vendors and see what was offered. While this was occurring on the inside, an informal Meet and Greet for attendees was held in the lobby.

Meeting Heroes

At the Meet and Greet, Hannah was able to meet her role model with Asperger’s syndrome—Jennifer Cook O’Toole.

Jennifer Cook O’Toole has written several books on autism including The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger’s Syndrome and Sisterhood of the Spectrum: An Asperger Chick’s Guide to Life. Hannah was overcome with emotion to meet the woman who two years before had signed Hannah’s book I’d bought when I came to the conference on my own. Jennifer wrote: “Thanks for sharing the sisterhood with me.”

In her ingenious writing, Jennifer has been able to give words where there had only been emotions and written rules for social exchanges which were so confusing to Hannah. Needless to say, it was a special moment for both Aspies.

Jennifer Cook O’Toole and Hannah

Self-Advocacy in Action

Hannah and I were so pleased to meet Kerry Magro and sit in on his session entitled I Used to Be Bullied for Having Autism: Here’s Where It Stopped. Kerry is a young adult with autism, an award-winning national speaker, and a best-selling author. If I want information about something new that I’ve heard buzzing around the autism community, I go to Kerry’s blog where he already has a post focused on the topic. During his presentation, Kerry said the majority of the time bullying stops completely when a peer intervenes and says, “What you are doing isn’t okay!”

I must say, what happened next probably wasn’t socially appropriate for Hannah to do, but I was very proud of her. A woman raised her hand to ask Kerry a question and prefaced it by saying, “My son has just been diagnosed with autism, but he doesn’t look like he has autism.”

Hannah turned her head around and said, “Autism doesn’t have a look!” Yes, I believe I’ve raised a daughter that knows a thing or two about autism awareness and self-advocacy.

Hannah and Kerry Magro

Insight from Dr. Shore

We were able to attend Dr. Stephen Shore’s session From Autism Awareness to Acceptance to Appreciation: Fulfilling and Productive Lives as the Rule. Stephen is a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome.

He stressed an abilities-based model for helping individuals with autism. Focus on strengths. He also said we should be working toward interdependence versus independence because we all need others to help us out. He believes that self-advocacy is very important and likened it to being lost.

He said, “If you’re lost. You stop and ask someone for directions, and that is what self-advocacy is all about.” He stressed that success is about living a productive and fulfilled life and not comparing yourself to anyone else.

Chloe Rothschild, Stephen Shore, and Hannah

Be Different with John Elder Robison

We spoke with a man whose book, Be Different, I had read only two years earlier and thought that’s a male version of Hannah—John Elder Robison. After speaking with Hannah for a while, he signed her book, “For the lovely Hannah, a fine fellow geek.”

John gives advice to individuals with Asperger’s syndrome such as: “You should respond to what others say, not just speak what’s on your mind,” and “I benefited from social compliance. Asperger’s syndrome causes me to be more logical and straightforward. Manners are neither.”

As a closing keynote speaker at the conference, John described how the differences of autism and ADHD can disable individuals as children even as they confer powerful competitive advantages upon individuals as adults. He showed how traits that crippled him as a child actually facilitated some of his greatest accomplishments as an adult. He shared a new way to look at disability, difference, and giftedness, and offered a different paradigm for educators, parents, and neurodiverse people. This man has given me tremendous insight into Hannah’s thoughts and actions. We are blessed by those who have come before us.

Hannah and John Elder Robison

I’m glad that Hannah found a strength in numbers within the national autism community at large. They are dear individuals that enlighten the both of us about the spectrum and help us understand Hannah’s emotions, needs, and authentic self more than I could ever dream.

Strength Even in Small Numbers

As I mentioned, I also spoke at the conference: Girls on the Spectrum: The Pink Side, which I will discuss in October’s post. I addressed common traits in girls by utilizing anecdotes, listed social/emotional pitfalls with suggested supports, and motivated attendees to embrace the pink side like never before.

Afterwards, Hannah and I were sitting at a round table in the exposition hall when a lady I recognized from both my session and Kerry Magro’s session introduced herself and asked if she could ask Hannah a few questions. We welcomed the visitor as tears began to gently run down her beautiful, yet concerned, face. I could tell she was bothered.

After attending my session and watching Hannah interact at the conference, she was confident that her daughter, too, was on the spectrum. Without divulging too much about this woman, she politely asked Hannah how she copes with certain triggers, deals with her anxiety, and accepts her differences. She then asked how to go about talking to her daughter about a diagnosis.

In truth, I believe this woman did more for Hannah and me then we could ever do for her, but I do believe she gleaned hope from our conversation. Since then, the two of us have gained a friendship miles and miles apart, while raising daughters with similar needs.

There is strength in numbers, whether you’re surrounded by hundreds at a conference, interacting with thirty at a local support group, or chatting one-on-one with another parent seeking advice on how to help their loved one on the spectrum.

Find Your Numbers

I hope you and your family have found a community to surround you. There is no better feeling than acceptance. I welcome any comments that you can share on ways in which you and yours have found strength within our amazing autism community—just drop them in the comments below.

Take care,

Lori

Last month I published The First 20 Lessons My Daughter with Autism Has Taught Me. 

I’ve learned far more than a mere 20 lessons as I’ve parented my daughter who has autism spectrum disorder, so I expanded the list.

Last month Hannah read every one of the lessons I listed and recognized them all as true, and she was proud to be acknowledged for teaching her mother a thing or two (or twenty). I’m confident that she’ll vouch for the credibility of the next 20 lessons, as well.

While all individuals with autism are different, maybe you’ll recognize a thing or two from the list of the next 20 lessons I’ve learned by examining the world through my daughter’s unique lens.

Lesson #21: The frontal lobe of the brain controls a set of mental skills that help to get things done—Executive Function.

Executive function helps to manage time, pay attention, switch focus, plan and organize, remember details, avoid saying or doing the wrong things, do things based on your experience, and multitask. Hannah struggles with many of these, which hinders her independence. I’ve learned to provide instruction and tools such as a Time Timer (to help her see how much time is left before the next activity), an electronic calendar, and an organizational system to help Hannah and my students in the classroom. A willing peer buddy can also be helpful beyond words.

Lesson #22: Stretching a child on the spectrum to appreciate new experiences takes baby steps. If stretched too far too quickly, they will break.  

I’ve learned that expecting Hannah to accomplish new tasks takes intervention and time. Setting expectations too high makes her feel defeated and discourages self-confidence. I don’t want her to feel as if she’s doing something wrong or isn’t good enough.

Lesson #23: It’s often difficult for children with autism to navigate friendships.

We’ve gone from scripted language to play therapy. Then from play therapy to friendship groups with the school’s guidance counselor. Many of my friends’ kids then became the ones she could count on for acceptance. And now Hannah feels as if she can associate with various cliques of kids at school. She has a lot of friends, though at times I’m not sure she recognizes this. I’ve learned that social skills must be taught and that a parent must intervene to make this happen or it simply won’t. The Asperkid’s (Secret) Book of Social Rules by Jennifer O’Toole is a fantastic resource!

Lesson #24: Routines and schedules play an important role for people with autism by helping create stability and order.    

Everyday hustle and bustle that most people find normal can feel like an overwhelming sensation of crowds, noises, and lights to those on the spectrum. As a child reacts, sometimes dramatically, the parents face incredible stress. Routine schedules provide calmer transitions. People with autism are quick to learn routines and are motivated to repeat them. I’ve learned that combining tasks into routine experiences and defining a schedule greatly decreases stress for the entire family unit.

Lesson #25: A sensory retreat is crucial. It assists in self-regulation by helping a child on the spectrum recover from “fight or flight” and return to a ready state.                                                                                    

Sometimes a five-minute sensory break from environmental triggers is all a child with autism needs to self-regulate. The retreat is a calm, quiet, therapeutic escape with tools to recover from or avoid a sensory meltdown. I’ve learned these safe places are especially useful on vacations and at holidays. My classroom contains a sensory corner complete with bean bags, sensory fidgets, lava lamps, and sensory water beads.

Lesson #26: Diagnosed with autism or not, children shouldn’t always be rescued from challenges. They should be taught how to face challenges with resilience.                                                                                                                      

Although we want to, we will not always be there to help our children problem-solve in difficult situations. I’ve learned that allowing Hannah and my students to struggle with a situation gives them experience working through frustration. Saving our children doesn’t equip them with the perseverance they will need.

Lesson #27: A child with autism may look like they’re ignoring you, but they’re actually waiting for you to enter their world.                         

What particular interests does the child with autism have? Engage them by using those interests, even if you’re not particularly interested in them. I’ve learned that people with autism focus on what they, not necessarily others, find interesting. It sometimes helps to say their name before engaging in conversation. Parents, therapists, and teachers must enter the child’s world and slowly pull them into ours.

Lesson #28: Imitating the movements of others, like waving, is very difficult for children on the spectrum.

Mirror neurons have been found to be particularly weak in individuals with autism. Therefore, it’s difficult for children with autism to imitate movements. Hannah used to always wave with her palm facing her body—in other words, she was waving at herself. Proprioception challenges further complicate mirroring. If a person doesn’t recognize where their body is in space, it’s hard to replicate movements. I’ve found that specific gestures, facial expressions, and tone need to be taught and defined. 

Lesson #29: Swinging, jumping, spinning, and rocking provide vestibular input to the brain and allow children with autism to organize their bodies and regulate their sensory systems.

These are all examples of repetitive motor behaviors. When a child elicits one of these actions, they are activating their vestibular system. These actions may automatically make the child feel good. However, many children with autism seek these sensations due to feeling under-stimulated. I’ve learned to allow these behaviors—even encourage them—as long as no one else is being distracted and the behaviors aren’t prolonged.

Lesson #30: Lining up toys, crayons, or cards provides order, comfort, and a sense of control for children on the spectrum.

When children with autism can have control over something, they need that behavior to remain as constant as a safe place. Many children without autism also line up items. The difference is that those children don’t normally become upset if the order of the items is switched around. I’ve learned that not only do many children with autism line up items, but there is most often an inherent reasoning within the order.

Lesson #31: Water (aquatic therapy) is a medium that provides ideal conditions to enhance language, decrease stimming, and increase eye contact for those with autism.

The benefits of water therapy are numerous. Water reduces body weight by 90 percent, which helps to relax muscles. By engaging in water activities, children are able to gauge their body boundaries much better. The hydrostatic pressure allows children to better tolerate touch immediately following therapy. I’ve learned that many children with autism also communicate and maintain eye contact more during and immediately following sessions. Give aquatic therapy a try!

Lesson #32: Chronological age and developmental age will most likely not be in sync for kids on the autism spectrum. 

Considering that autism is a neurological developmental disorder and one of the major red flags is that children don’t hit their developmental milestones on time, it’s easy to see that a child can be five years old chronologically but have the mentality of a two-year-old. I’ve learned that this anomaly is observable while children play board games (turn-taking), discuss preferred interests (My Little Pony compared to mainstream teen culture), and self-care. So, if working on social pragmatics, you might want the child with autism to develop a friendship with a younger child.

Lesson #33: Children with autism are heavily dependent on cues and prompts in order to move on to the next task—even when they’re able to identify the next task. 

In The Reason I Jump, Naoki Higashida, a thirteen-year-old boy with autism, says, “People with autism are sometimes unable to move on to their next action without a verbal prompt. For example, even after we ask for a glass of juice and are given it, we actually won’t start drinking until someone’s said, ‘Enjoy’ or ‘Go ahead and drink then.'” Higashida admits that it doesn’t make sense because he knows what to do, but says it can be terrifying to do it without the prompt. I’ve learned not to give up on Hannah getting through this terrifying phase because she wants to free herself from the chains that hold her to waiting for the prompt. Her most arduous tasks to accomplish without cue are getting out of the car and eating.

Lesson #34: Children on the spectrum tend to see the parts of an image or idea (gestalt) before the entire image or idea materializes.

People with autism tend to see the details of an object first and then gradually the entire image comes into focus. A vivid color or an interesting shape within an image may capture their attention and concentration. Hannah is especially drawn to shapes contained within a whole. When she was younger, we would pass homes while walking through our neighborhood, and she would call out the names of certain shapes comprising the homes. It took time before I was able to figure out her intention, as she never pointed (another hallmark of autism). I’ve also learned that children with autism may become fixated on certain parts of a conversation and miss the big gestalt intended.

Lesson #35: Those with autism tend to have an innate connection with nature, which provides a peaceful effect. 

Hannah’s demeanor is calmer and more peaceful when she’s able to appreciate the great outdoors with all of its sights and sounds. John Elder Robison, an autist and author of Look Me in the Eye, said, “I probably feel more at home in the woods than anywhere else.” Hannah says that nature is logical and doesn’t involve emotions—her idea of tranquility. Temple Grandin (professor of animal science and an autist) has suggested that people with autism have an innate connection with animals. I’ve learned that nature is another venue in which Hannah and others with autism feel great comfort and peace.

Lesson #36: Society has general rules that others learn from observation. This hidden curriculum must be directly taught to children on the spectrum.

The brains of children with autism are not automatically wired to pick up, understand, and use the social milieu around them. Hannah used to interrupt others in the middle of a conversation and ask questions endlessly in class. I’ve learned that the hidden curriculum must be defined and explained to my daughter. In other words, children with autism will follow specific social norms if the rules are taught and reinforced.

Lesson #37: Acting as someone that you aren’t is the highest form of self-harm and is exhausting. Allow your kids to be themselves!

Naturally, as parents, we can all picture the kids we think our children should befriend. Often they are the exact same type of friends we chose when we were younger. Even if we, too, have autism, our children are not us. Hannah feels more comfortable being around kids whose interests are similar or kids that are younger. I’ve also explained to her that you can have different friends outside of school than you do at school. I’ve learned that trying to selectively choose whom Hannah befriends leaves her feeling as if her interests aren’t important and that she should fit in when she does not. It emotionally exhausts her. We don’t want that for our kids.

Lesson #38: Individuals with autism are perfectly capable of feeling sympathy for others; however, cognitive empathy (inferring mental state) is more of a struggle. 

Children with autism are able to show feelings of compassion (sympathy) to others especially in times of sorrow. They are also more than capable of showing emotional/affective empathy (empathic concern) for others. However, I’ve learned that cognitive empathy is not a collective strong point. It is extremely difficult for children with autism to infer another person’s point of view in a situation. Liane Kupferberg Carter, author of Ketchup is My Favorite Vegetable: A Family Grows Up with Autism, said, “While it’s true that autistic people often have a harder time reading social cues, it is quite a leap—and a dangerous one—to assume that a person’s inability to interpret non-verbal cues means he doesn’t care and has no empathy.”

Lesson #39: Self-advocacy for individuals with autism means they must expect people to treat them with dignity and respect while also requesting what is needed in order to succeed. 

Self-advocacy starts with respecting oneself. If a child with autism, or anyone for that matter, doesn’t respect herself and believes she deserves to be treated unfairly, then others probably won’t go to the trouble of respecting her or treating her fairly. I’ve learned that by identifying Hannah’s strengths and weaknesses, then determining specific tools to be used for accommodations and modifications, she has a stronger voice to ask for what she needs. The hope is that one day she’ll be able to rely less on those aids.

Lesson #40: No doctor can make a definite prognosis as to the limits that individuals with autism can achieve. Hope and early intervention are the best medicine. 

In 2007, at the early age of two, Hannah’s neurologist gave a grim prognosis for her future. But many other professionals believed she could and would gain more skills. Through early intervention, neurological pathways were rewired resulting in positive development. I’ve learned that with as much advancement that has occurred in the last decade with autism, it still remains a mysterious anomaly—we’re still not even sure about its cause. Until we know more, we must try everything we can to bring our kids to their greatest potential.

I hope my revelations continue to raise an awareness of the needs of individuals with autism spectrum disorder. The more we familiarize ourselves with some of the challenges a person with autism faces, the better we can ensure our loved ones get what they need! Be your child’s champion by understanding their actions, which sometimes speak louder than their words.

I welcome any comments that you can share on lessons learned from individuals on the spectrum—just drop them in the comments below.

Take care,

Lori

As Autism Awareness Month winds down, I reflect on how much more my daughter, Hannah, has taught me than I could ever teach her.

Being on the front lines with Hannah’s autism has made me a better mother, teacher, and person. Only through a decade of experience with Hannah have I surmised that Hannah was hardwired to be who she was going to be all along. And, my passionate, determined, ambitious, and driven little girl is amazing just the way she is!

Embracing that acceptance has felt like a heavy weight lifted off my shoulders. While I realize all individuals with autism are different, here are the first 20 lessons I have learned by examining the world through my daughter’s unique lens.

Lesson #1: Hannah will be the first to tell you that she is different—not less or more.
I never kept Hannah’s diagnosis a secret from her. That would have been difficult with all of her therapies and doctors’ appointments. The knowledge of her diagnosis, complete with its strengths and challenges, has empowered her to own her “uniqueness.” She exudes pride. She has never shamed her autism or used it as an excuse. The lesson I’ve learned is that people living with a diagnosis of autism are who they are, unique and invaluable.

Lesson #2: Although autism plays a very significant role in Hannah’s daily interactions, it does not define her.
Without a doubt, autism has shaped Hannah’s personality and interests—the diagnostic criteria suits her to a T. However, Hannah plays tag at recess with friends, volunteers at our county’s Humane Society, and runs a fast mile in cross country. You won’t find those in the diagnostic criteria. I’ve learned not to make assumptions about what she or any person with autism is able to achieve.

Lesson #3: Not all individuals have the same sensory systems.
Hannah’s sensory systems used to challenge her beyond belief. I remember taking her into a loud, crowded room and hearing her scream, “It hurts! It hurts!” Now she has no problem with loud rooms, though specific, individual tones still set her off. Her tactile defensiveness is challenged with the change of clothing due to the change of seasons from summer to fall. Long sleeves scrape against her skin, and jeans are made of uncomfortable denim. Eating has always been an aversion due to texture and interoception challenges. I’ve learned to be more aware of and compassionate about how others literally feel the world.

Lesson #4: Some people think literally and in pictures.
Figurative language including idioms, metaphors, sarcasm, and hyperbole are difficult for her to follow. When she was younger, I bought a children’s book of everyday idioms to help her understand their suggested meanings. Her favorite has always been: Has the cat got your tongue? I’ve learned it’s okay to let go of metaphor in order to respect Hannah and others who benefit from straightforward communication.

Lesson #5: When I tell my daughter something is going to happen, it better happen or I’m going to wish it had.
Hannah has a very rigid schedule, which helps with successful transitions. This is crucial for her self-regulation. If a preferred activity has to be pulled from our schedule, her inflexibility causes great anxiety to all. It’s a life lesson for me to be absolutely certain I can pull off what I say I will, which has forced me to be clear and honest with everyone in my life.

Lesson #6: The ticket into many of our children’s worlds is their affinities.
As a toddler and young child, Hannah’s affinities were trains, space, shapes, numbers, and letters. Her affinity for the last three years has been cats. I used her affinities to gain her attention and then slowly made stretches and connections to other items or topics. I’ve seen how this is true of any person—identify their passions and affinities, and you can engage almost anyone in what you want to present or teach. It even helps make new friends, young or adult, to connect with that person’s greatest loves and enter their worlds.

Lesson #7: What I believe makes an individual happy doesn’t make Hannah happy.
My happy is not her happy. Hannah doesn’t need people to agree with her or to enjoy what she finds interesting. Her facial affect for happy isn’t as expressive as others’ either. Mirror neurons may play a role in this, but it’s helped me view all people with an open mind, knowing that they may not delight in the same things I delight in or laugh at the jokes I find funny. Understanding Hannah’s happiness has helped me love others more intimately.

Lesson #8: What is a challenge today may not be a challenge tomorrow.
Hang in there, Mom! Yes, because of Hannah’s proprioception and vestibular sensory challenges she experienced gravitational insecurity. She had a rough time learning to walk because she had no idea where her body was in space. She couldn’t feel the floor! But she learned how to walk—she even runs cross country! As soon as she was on her feet, I wanted her to begin to talk. Language was very difficult for her to motor plan—some days I wondered if she would ever learn to interact with spoken words. But she began using echolalia and her growth continued from there. Now she shares about her day and we chat about cats. She talks so effectively, we are currently working on filtering comments! I’ve learned to look back and see how far my child has come—and celebrate how much she’s emerged!

Lesson #9: Hannah doesn’t just learn by watching others.
She has to be taught everything she knows. Until I had my son, Connor, I never knew that kids naturally just pick-up how to get dressed, eat, and use the microwave. Hannah even had to be explicitly taught how to peel a banana. I’ve learned to teach even the simplest activities step-by-step, which has taught me to think through everyday actions I’d otherwise taken for granted and appreciate how hard some people have to work just to get out the door in the morning.

Lesson #10: It is imperative that I no longer discuss Hannah’s challenges in front of her.
Hannah has always been raised with therapists in and out of our home. She’s truly a therapy kid, so there has always been open communication between the therapists and myself in front of her. Not long ago, however, she adamantly requested that we not discuss areas needing improvement in front of her, and I respect her wishes. And, I understand. What person of any age would want to hear about challenges, struggles, and shortcomings all the time? Instead, we work hard to build her up by recognizing and building on her strengths.

Lesson #11: I not only need to tell Hannah to stop doing something, but, it’s also important to give her the reason why.
If Hannah is doing something inappropriate, chances are that she doesn’t know that it’s socially unacceptable. And, she has no idea why she should be embarrassed. Providing an explanation for redirection always helps when correcting social skills. Clear communication about the why behind things is helpful for any child and forces me to think about social norms I’ve come to value.

Lesson #12: It’s easier to just do tasks for Hannah; however, this will make her more dependent on me in the future.
Hannah must learn that she is going to have to do things on her own, and I have to remember that tasks don’t have to be done perfectly. I’ve posted lists all over our home to make her more independent. The steps to getting ready in the morning are located on the inside of her bathroom cabinet door, and the list of school items she needs to pack in the car is located in the laundry room by the garage door. These lists help Connor and me, as well, and remind me of the power of a checklist.

Lesson #13 Flapping (stimming) just meant that Hannah wanted to communicate.
I had to learn to listen when there were no words. Hannah wasn’t using the flapping as a ritualized behavior. She wanted and was excited to communicate, but she just couldn’t. Flapping was her communication. The lesson helped me connect with my daughter early on and read her nonverbal cues. I think it’s helped me continue to connect with her and, in a way, with others in life.

Lesson #14: I cannot give Hannah a list of things to complete.
Everything sounds garbled to her after the first item. When I finish the list, she has even forgotten the first item. Then, her anxiety and patience are challenged. Because she is upset with herself, she takes it out on me. Time order words help, but better yet, I’ve stuck Post-Its all over our home to write lists down when needed. This has taught me to avoid overload and keep it simple, a skill I’ve used as a teacher in the classroom and even with myself, so I don’t get overwhelmed by my own long to-do list.

Lesson #15: For every challenge that autism has given to Hannah, it has also given her a gift.
Hannah is baffled by the social interactions needed for team sports; however, she is a concert pianist. She has affinities she can’t avoid yet is a brilliant artist. Hannah has difficulty with anxiety but has an amazing memory. This lesson may be exaggerated with Hannah because her challenges seem so huge, but the principle is true for every person: we all have challenges that almost always come with a gift. I’ve seen it in my classroom…and myself.

Lesson #16: Behavior is a form of communication.
Hannah often becomes upset when her brother is praised for an action and she is not. She feels as if Connor’s successes are her failures. This is obviously not true, but it took some explaining to allow her brain to process and accept. In the classroom, Hannah becomes upset if I use an algorithm instead of a more conceptual model. She must see the mathematical process being used and at one-hundred percent. Hannah has taught me that our moods speak when we can’t find the words—true of everyone, not just someone with autism.

Lesson #17: Social pragmatics need to be taught directly.
Hannah has used scripted language since she was a very young age. It started with the words, “Hi! My name is Hannah! What is your name?” When I determined she couldn’t concentrate on what I was saying while looking me in the eyes, I learned that she could imagine a dot on the bridge of my nose on which to concentrate. This holds her to societal norms without risking positive social interactions.   

Lesson #18: Receptive and expressive language don’t always correlate with aptitude.
While Hannah’s cognitive ability is far above average, her motor processing speed is delayed. She needs to be given time to process others’ words, and time to form her own responses. Wait time is essential. When she was little, I would ask her a question and forget all about it. Five minutes later she would come back with the answer. I’ve learned not to assume that someone is not sharp if they can’t answer instantly, which has been invaluable in the classroom.

Lesson #19: Mind-blindness inhibits Hannah’s ability to see things from a different viewpoint.
She has a difficult time understanding how others think, feel, and respond. And once a difference is explained to her, she doesn’t generalize it to apply to other situations. Hannah assumes that everyone shares her same way of thinking, has the same thoughts about a person, event or situation, and shares her same point of view. And, when they don’t, she emphatically believes they are at fault. Hannah has taught me that some challenges of autism result in a tone and attitude she cannot easily change. Understanding this has helped me be gentler with her and try to explain other viewpoints, which I must do over and over in each new scenario.    

Lesson #20: I did nothing to cause Hannah’s autism.
Hannah has shown me that this was simply how she was created to be. She is a unique blessing—not someone that needs to be fixed. She was made to grace the world with her headstrong tenacity, one of autism’s gifts. Watching Hannah has helped me stop the blame I heaped on myself for small things that happened during my pregnancy, like the fall in the driveway, the occasional soda, or the newly-painted room I walked into one afternoon. Hannah, and all children and adults with autism, are who they are. What a wonderful lesson to be free from feeling like I was at fault!

Only by acting as a detective to uncover the basis of Hannah’s behaviors have I been able to encourage her beneficial actions and discourage adverse ones. These lessons have changed the way I parent her, especially, but also her brother. They’ve helped me teach with greater compassion, and advocate for people with greater clarity and insight.

I will continue to share more in a series running throughout the month of May. I hope my revelations will continue to raise an awareness of the needs of individuals with autism spectrum disorder.

I welcome any comments that you can share on lessons learned from individuals on the spectrum—just drop them in the comments below. You may even see them in a future post!

Take care,

Lori

I started putting ink to page over a decade ago, in 2006, when my daughter Hannah was diagnosed with autism. In a disorderly fashion, these scribbles have been collected on everything from napkins, to my iPhone’s printed notes, to journal after journal.

Like unsorted photos from the past, these memories have piled up over the years. Their containers are located adjacent to yet another set of containers that store doctors’ and therapists’ notes, Individual Education Plans (legal educational documents), and a superfluous amount of pamphlets, flyers, articles, and conference handouts. While the paperwork means nothing to the average person, it’s my collective treasure of proven effective interventions and strategies that have helped Hannah progress along the autism spectrum—evidence.

Although the containers house resources and emotional ramblings, only my scattered memories can weave our journey together. And, I have been driven to understand these memories.

You see, over a decade ago, I had no time to process the painful experiences. For if I had, the grief would have been too overwhelming. Moms can’t break down. So, disassociation was my best alternative.

Most authors write with one of three purposes: to persuade, to inform, or to entertain. I can’t seem to find my desire to disclose our story conveyed by any of those three simple words. My passion for writing, along with most special needs parents, is more profound than one word can even fathom to encompass. Writing gives all of my experiences related to autism since 2006 structure.

We Write Because Writing is Cathartic

Writing is a healing therapy for me. Disability Scoop published a study in 2009 stating that moms with children with autism have stress similar to combat soldiers. By writing about a time that seemed like a tragedy I had no time to process, I am able to explore episodes that have remained dormant for years.

Writing helps to dissolve some of those hard knots of fear, grief, loss, and guilt that have kept me stuck in the past. I’ve had to sit in some dark places trying to shape the past’s meaning. However, once on the page, those undesirable knots subside—the experience has been transformative. I felt no control over Hannah’s autism—it’s a terrible feeling not being able to fix your child’s challenges. Writing is a way to interact with and interpret the past with truth and clarity. It illuminates our experiences as they were.

Writing has taught me not to sidestep any issues or try to eliminate painful experiences. I have found that if I do, the result does not speak truth in order to bring about closure. For me, until I record it, the story seems unfinished and cheated—even if the reader would never know. Once on the page, it’s as if a great weight, a weight of the past, has been lifted. Truth brings peace. Sometimes my words may seem too harsh, my personality hardened, or my convictions too strong; however, the root of my beliefs always lies in what is best for our kids affected by autism.

We Write to Describe Our Experiences to Others

Writing allows me a venue to share my feelings with others. Hannah’s autism diagnosis was a defining moment in my family’s life that changed our course. I have publicly kept quiet beyond my words on a page. No one wants to hear about our challenges day-in and day-out, and I don’t want others’ pity. However, I have a huge inner life that needs a public voice. I write not only to hear that voice, but to share that voice.

I also believe that reflecting on my past in writing will allow others to feel less lonely. Sharing private experiences in a public forum reveals our family’s life on the front lines with autism. Hopefully, others are enlightened that autism is all about community and learn that other families experience similar situations. I love knowing that our story may help other families—it’s as though my writing says, This is who we are, this is what we’ve been through, and I hope your family can learn something from us. I believe that others will benefit from our experience by following our successes and steering clear of our failures.

We Write as Staunch Autism Advocates

After attending the Autism Society of Indiana’s Autism Expo this weekend, I continue to be thrilled by the movement in autism awareness, advocacy, and prominent supports. The number of therapy centers and programs that have been created since Hannah was going through early intervention is nothing short of a miracle. The autism writing community also influences those changes. Words are powerful!

When I sit down to write, I feel as if I’m a representative of the autism community—not just Hannah’s mother. My words are intended to encourage early identification, immediate interventions, and resilience along the journey. I don’t want others to go without support.

We Write to Create a Literary Archive for Our Families

Early intervention and continued support have been transformative for Hannah; however, the mass of paperwork houses painful memories that I don’t want so visible—they carry emotional valence for me. I don’t want to relive it. However, I do want both of my children to value our family’s trajectory. I don’t ever want its essence forgotten, so I find personal satisfaction in examining and documenting our life. I want to get it on record as our story that we can read and re-read.

Pulling our history together in narrative form assures that our path will not be forgotten. Shared memories make our past seem more authentic. It leaves a piece of us behind that Hannah and Connor will crave in their older years—a legacy. There is value in capturing both treasured and challenging memories—a timeless gift.

We Write for a Clearer Version of Who We Are Today

Only by reading about the challenges that my family has overcome can I appreciate where we are today. In other words, as I look at what makes our journey worth reading, I also reveal what makes it worth living. I write to find myself and tap into my gratitude. Hannah has come a long way, and I have found peace after divorce.

I believe I am so much more than the single, working mother who sometimes feels as if the daily grind of fixing meals, packing backpacks, teaching school, shuttling my children, helping with homework, and tucking my children into bed is all I am meant to do. I never want to lose myself as I had before.

So, why do special needs parents write? We write to preserve the past, share our present, and hope for the future. Through writing, I’ve realized that I’m not alone, and neither are you! Only by looking at my family’s past have I been empowered to move on with the rest of our life and see the role I can take in the lives of others.

I welcome any comments that you can share on how writing has helped you along your journey with autism—just drop them in the comments below.

Take care,

Lori

“Today you are you, that is truer than true. There is no one alive who is youer than you.” —Dr. Seuss, Happy Birthday to You!

My dearest Hannah,

Happy 12th birthday, sweetheart! I don’t know why twelve has hit me so hard, but it sure has thrown me for a loop. After rousting you out of bed this morning, you declared that this party would be your best yet! When I questioned you why, you responded, “This year I have lots of friends. So, it feels different. You normally invite some kids from my class and your friends’ kids. But, this year, it was my list.” And, Hannah, you are right.

I couldn’t be happier for you. Friendships have never been easy for you to navigate due to your autism, so today you have reminded me that we need to recognize and celebrate your progress at twelve years of age.

Looking back, I remember you didn’t talk until you were three-and-a-half. Then you used lots of gibberish and echolalia. In kindergarten, scripted conversation allowed you to engage more with your peers. I think about how many social, play, and friendship groups provided opportunities to interact with others with supports. And, I’m certain you don’t want to add up the years of speech therapy. I know I don’t.

You have found a cohort of peers that accept you, understand you, and guide you. Some are more patient with you than I am!

As your math and science teacher, I am blessed to be privy to these interactions on a daily basis. Let me tell you what I see, Hannah. Kids don’t mind if you sit by them in class or in the cafeteria. Your friends often give you prompts in class, like, clear off your desk, get out your laptop, or write down your assignment. If you are having a difficult time understanding a math problem presented on the board, another student in your group will explain it to you in a different way. Your classmates also entertain your affinity for cats. At recess, you pop around from group to group trying to fit in with more than one set of friends. This fortitude is admirable.

It has taken me many years to get your birthdays right! For your fourth birthday, we walked into Chuck E Cheese’s ready to celebrate. Only minutes after walking through the doors and getting our hands stamped, you started screaming and covering your ears. Everyone who had come for the party remembered your words: “It hurts! It hurts!” So, we packed everything up again, drove home, and celebrated in the comfort of our own home, where it didn’t hurt.

We went to Incredible Pizza to celebrate your eighth birthday. You were so excited to race your friends with the go-karts, but you were inconsolable when a friend passed you on the raceway to take the checkered flag. Then, when all of your friends won a prize in the giant claw machine, and you didn’t, I thought a meltdown was inevitable. However, an employee noticed your distress and was kind enough to open the machine and give you a prize. Crisis averted.

After beginning this letter, I discovered why your birthday has been so hard on me this year. Time is running out before you are an adult. I have high hopes you will be attending college and living independently in the fall of 2023. That’s only six years from now. So much of the outside world baffles you—how can I expect you to learn all you need to know in this short span of time? How can I ensure you gain the life skills needed to navigate it? I wish I could make life stand perfectly still. But, time stands still for no one—not even those with autism.

About a month ago, you asked if you always need to make sure that people you come into contact with need to know that you have autism. “It’s up to you,” I said. You can tell them as little or as much as you deem comfortable. However, you must always advocate for what you believe you need to be successful. I said it’s also your decision whether or not you spread awareness and advocate for others. At the end of the conversation, you proudly declared that you would always be transparent when it comes to your autism.

Every year, I see you understand your autism more and more. Just remember, autism doesn’t define you, nor is it a layer that needs to be shed. Autism makes you uniquely you!

So, at the end of the day on your twelfth birthday, I’m confirming that this was the best birthday party yet. You looked beautiful, my dear. Not because of the new clothes you were styling or the perfect French braid that drew attention your thin, delicate face—neither of which you wanted to wear, but I made you. You were beautiful because you smiled all evening. There was not one meltdown. There was not one moment when I saw you alone picking at your nails, playing on your iPad, or reading a book. You skated on the rink, ate a bite of pizza and cake, enjoyed the DJ booth with your friends, and opened presents that were uniquely you—an animal cell model, Warriors’ series books, Barnes and Noble gift cards, puzzles, art and craft supplies, cat-related items, Reese’s cups, Swedish fish, and more. Your friends know you.

And as I packed away the presents and placed the remainder of the artist’s palette cake, complete with brush and splotches, into the box to leave the skating rink, I heard the DJ play “You Are My Sunshine.” You were still skating with your friends and spent the night with your dad.

I haven’t had the chance to tell you how much the requested song meant to me. I’ve sung that song to you every night as I’ve tucked you into bed since you were a newborn.

You’ll never know, dear, how much I love you.

Happy 12th birthday, Sunshine on the Spectrum!

Love,

Mom

Photography by Ardea Photo

Most fit in better with boys, as boys’ play is more functional and communication less confusing. Their affinities and interests are usually with animals, a specific book series, and collectibles (My Little Pony, Littlest Pet Shop, Ever After High, and more)—in fact, these often pose as their best friends. And, they are hard-wired to defend their position on topics with staunch conviction. They are our girls on the autism spectrum—amazing in all of the ways they are not typical. But overlooked at a high price that is nothing less than disheartening.

Why Are Our Girls Overlooked?

While current estimates show that autism appears in about 1 of 68 children in the U.S., only 1 in 4 of those children diagnosed are girls. Few argue these stats, but researcher Janet Lintala says that if diagnostic criteria were established that could quantify female autistic behaviors separate from male autistic behaviors, the ratio may more accurately reflect 1 girl to every 2 boys.

Currently, some girls who have autism are being misdiagnosed with attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, eating disorders, and anxiety disorders. And those girls actually getting an autism diagnosis are getting that diagnosis significantly later than for boys, limiting opportunities to receive early intervention in the form of treatment and therapies.

Because girls were often left out of earlier autism studies, diagnostic behaviors are heavily skewed to indicators that present more typically in males. While my daughter, Hannah, happened to mirror behaviors typical in males with autism, doctors still did not go down that path because of her gender. We began to realize the need to explore a diagnosis because her developmental milestones were delayed.

As reported in Scientific American, a 2012 study by cognitive neuroscientist Francesca Happé found that if boys and girls have similar levels of autistic traits, the girls needed to have either more behavioral problems or significant intellectual disability—or both—to be diagnosed. Consequently, this finding suggests that professionals are missing many girls who are on the less disabling end of the autism spectrum. Previously, this category was labeled Asperger’s syndrome.

Girls with autism silently develop their own coping mechanisms to mask their challenges. They listen to others’ language in social situations and then copy it in other conversations. Unfortunately, this backfires when the context of the new situation doesn’t warrant the language previously utilized. Obviously, lack of receptive and expressive language serves as the culprit.

Girls on the spectrum also continually apologize for their social faux pas in order to avoid attention. In group situations, these girls naturally gravitate toward others that may also be socially different. This, in return, makes them feel more normal.

What Are Some Behaviors of Girls on the Spectrum?

Girls do share three of the paramount characteristics of autism that appear in boys: difficulty with social pragmatics, trouble with verbal and nonverbal communication, and limited interests in activities and play. Hannah didn’t start speaking until around the age of three-and-a-half. She had to be taught the subtleties of engaging in conversation, such as, “Hi! My name is Hannah. What is your name?” Facial expressions were something she had to memorize—not something picked up by watching others. She also perseverated on numbers, colors, and shapes.

Bestselling author Jennifer O’Toole, a female with autism, says the word best used to describe girls on the spectrum comes down to “too.”

“Too much, too intense, too sensitive, too this, too that,” O’Toole says. “There is really not a time when we’re not feeling some level of anxiety, generally stemming from either sensory or social issues.” Hannah’s intensity to play every note on the piano or violin correctly is too much. Her sensitivity to the texture of food is too heightened. And, her tenacity to prove her point-of-view correct remains steadfast—some might say too intense.

What Price Could be Paid if Autism is Overlooked?

Masking autism while not feeling comfortable in their own skin is simply exhausting for our girls. Unless they are empowered to understand the beauty in their differences, low self-esteem and a feeling of worthlessness are inevitable.

Of course, adolescence is difficult for most kids, but it’s especially challenging for girls with autism. Many can cope with the far simpler world of elementary school friendships, but they hit a wall with the mean girls of middle school—their naivete leaves them helpless. They may even be years behind their peers when it comes to maturity.

Emotional immaturity results in apathy toward personal hygiene. Many highly intelligent girls on the spectrum have difficulties washing their hair, wearing deodorant, and dressing appropriately. Some of the challenge lies in motor planning, proprioception issues, low muscle tone, and mind-blindness. Some won’t bother trying; others try, but struggle. And when they neglect personal hygiene at critical stages, friendships suffer.

What Can Parents Do to Aid Their Girls on the Spectrum?

Parents are best positioned to help their girls on the spectrum. First of all, be aware of the overarching indicators for autism. Don’t be afraid to ask trusted medical professionals or your school corporation’s autism consultant about performing an evaluation.

Whatever the result of the evaluation, get your daughter the help she needs. Social play groups were extremely helpful for Hannah. Scripted conversation along with social stories helped transform her language and enabled her to understand the unwritten rules of the world around her.

Jennifer O’Toole’s book, Sisterhood of the Spectrum, gave Hannah concrete pitfalls (social gaffes) to avoid while embracing the awesomeness of her true self. Jennifer O’Toole assures girls, “We often mistake our most immeasurable gifts for shameful flaws. You are lovable. Right now. Without changing a thing.” True acceptance of our children with autism means not trying to change who they are, and that helps the girls themselves begin to accept—even embrace—who they are. Even though autism is not something that can be shed or cured, we must work to help our children become as independent and positive as possible.

Our girls also need to learn the skill of self-advocacy. Self-advocacy is teaching our girls to expect other people to treat them with dignity and respect—they learn to ask for what they believe they need to succeed and accept nothing less.

This generation of children with autism clearly has significant advantages over those of the past. But much more research will need to be done to design better and more gender-appropriate diagnostic tools.

Perhaps in the meantime, the experiences of girls with autism should teach us to be more tolerant of socially inappropriate behavior in girls.

I welcome any questions and/or comments—just drop them in the comments below.

Now go empower a girl you’ve always believed to be a little bit different!

Take care,

Lori