By Gloria Jones Ellis, M.A. – Educational Therapist & Co-Founder of Lighthouse Homeschool Solutions
Our teenage daughter is autistic. She prefers that designation over the person-first terminology of “child with autism,” and has thus taught us to adapt our own language. Autism is part of who she is and we’ve always been aware of this. Our “real child” isn’t hidden somewhere; she’s always been right in front of us. She’s beautiful and funny and creative. She doesn’t always communicate or react in ways that we expect or understand. Things that we expect to come easily might be quite challenging, and things we expect to be challenging are sometimes understood or mastered by her with very little difficulty or fanfare. She now vacillates between annoying us with her “typical teen” behavior and impressing us with her maturity, responsibility, and affectionate nature. She is a person of whom we are very proud and one who, despite our never-ending parental worries, expects to go to college and live as an independent adult. This was not, in any way, a given.
Micaela was diagnosed with autism at 2 ½ years old. Her language and communication skills were severely delayed. She did not interact with other people, children or adults, in typical ways. From infancy on, she was often in her own world, with its own set of rules, emotions, behaviors, and humor. We often felt as though we weren’t really an important part of that world, beyond supplying the basic necessities of food and shelter. She squirmed away from our efforts to hug her. She simply stared at us if we ever expressed sadness or cried around her. She babbled and talked to herself when she needed something, and she never asked us for help or invited us to play with her. Following her initial diagnosis and her significant early challenges, we were willing to accept that she might be dependent upon us forever, but we didn’t assume that this was a foregone conclusion. We fully accepted that possibility, but we never eliminated other potential outcomes for our family.
It has been a long road getting from where we started to where we are today, but our journey started with accepting autism as a part of our daughter in the same way her hair color and eye color are a part of her. Her autism is neither a “gift” nor a “curse,” it’s just part of her. This straightforward acceptance has played a large role in our ability to ultimately connect with and teach her, in the way most parents expect to do naturally with their children, but in a way that can often elude parents who are raising children on the spectrum.
It started with acceptance, but this in no way means accepting limitations on her ability to learn or our ability to teach her. It means accepting that we would need to find new pathways for our family because the paths paved for neurotypical children would not successfully take our family towards our goals, and the paths open to children on the spectrum were often dreary, uninspiring, or downright demeaning to our child. We looked at special education preschool programs with small, windowless classrooms and no outdoor play areas. We observed ABA sessions conducted by expressionless therapists who used crackers, candy, and stickers as rewards and made their check marks next to finite goals printed on a sheet of paper. We saw professionals treating autistic children as clinical cases rather than as fellow human beings with whom they could laugh and play! The clipboard seemed to represent an invisible, emotional barrier that existed between Micaela and some of her therapists. All of these supposedly therapeutic pathways fell far short of our hopes and expectations for our daughter. We did not want to “train” her to “act normal.” We wanted to elicit genuine feelings of enjoyment in the company of others, and we wanted to encourage an internal motivation to act in ways that are based on her understanding of and feelings of empathy for other people. So, we committed to forging our own path with the support of like minded family members, educators, friends, and professionals.
Finding Our Path
Step 1: Honesty
Autism is to be discussed openly and unashamedly with our family, friends, classmates, and, most importantly, with Micaela. Micaela has always known about her diagnosis. Conversations might start with a simple, “When you were first diagnosed with autism,..” or, “Because of your autism…” We’ve always talked honestly about our fears and frustrations. In our family, we joke with and tease each other about the challenges and misunderstandings that come with autism. At this point, Micaela loves to make sarcastic comments about “neurotypical privilege” and make jokes regarding the sad state of our own lives due to our “lack of autism.”
Beyond being very open and honest within our own family, we’ve also always felt that the best way for Micaela’s peers to connect with her is to talk about her diagnosis with them (always with Micaela present). In the same way we wouldn’t introduce a blind or deaf student into a class of kindergarteners without some preparation, we never thought it would be fair, to Micaela or her peers, to expect them to accept and include her without some understanding of why she didn’t talk or act in the expected ways. Her challenges were not clearly visible on the surface so, when she was still in elementary school and struggled with many basic communication and social skills, we were very open and honest when introducing her to new people. As she gained independence, we encouraged her to advocate for herself in the same way. I can still remember those first times we let her make a purchase in the store on her own, or go with the hairdresser or dentist without one of us following along and sitting right next to her to “translate” for her. By that point, as an 11 or 12 year old, she was comfortable saying, “I have autism so I may ask you to repeat yourself or explain what you mean so I can understand you.” It was scary for us, as parents, to back off and let her speak for herself knowing that she might be misunderstood or judged harshly by others, but we felt very strongly that she would need to be her own advocate if she hoped to live independently in the future!
Step 2: Understanding
We would need to understand our young daughter in order to connect with her and teach her. We did not take every piece of information about autism as a gospel truth to be applied to our own situation. We took what seemed relevant and helpful and in line with our own beliefs, and we discarded the rest as perhaps helpful to another family, but not for us. We observed her in different settings, we looked at her assessment results, and we trusted our instincts. Armed with the information we gathered, we learned that, unlike most children on the spectrum, Micaela is hyposensitive, and requires more stimulation to meet her sensory needs. So that meant loud music, lots of twirling during play, and extra deep hugs. These activities were ones that engaged her, so that’s what we needed to do. Finally, we got the chance to hug our child without her squirming away! She would even ask for more cuddles once we started giving her big, deep bear hugs!
We learned to follow her lead in play rather than expecting her to do typical play activities, and once we started doing that, she enjoyed our company and started seeking it out. This became a great basis for expanding her interests. (Dad enjoys this activity, and you enjoy being with Dad, so maybe you’ll enjoy this activity with him!) We also discovered early on that, though she didn’t speak with typical fluency, Micaela was deeply interested in the mechanics of the way letters form words, so we would spell to get and hold her attention. We quickly learned that, while she might consistently fail to process our words when spoken, she would eagerly attend and follow our directions when the words were spelled out. Finally, we learned that we could use her appreciation for rules and structure to our benefit. Timers, counting, simple statements, and clearly stated rules became some of our most useful parenting tools. We also made sure to share what was successful with everyone involved in Micaela’s life. We always tried to keep teachers, therapists, babysitters, and grandparents on the same page and worked collaboratively with everyone who interacted with Micaela on a regular basis.
Step 3: Optimism
We remain optimistic about our daughter’s future and accept the day-to-day results of our best parenting efforts. Autism is never to be used as an excuse for limiting our expectations, it only motivates us to adjust our timeline and alter our pathways to meeting our goals. Of course, we never expected or pushed for specific academic accolades, athletic pursuits, or artistic accomplishments. We’ve always simply expected, and worked towards, a few basic life and parenting goals. We felt we could say we’d done a good job as parents if our children were self aware, eager to learn, open to different perspectives, confident, compassionate, and respectful to others. We’ve never felt that autism would put any of these goals out of reach. Beyond these basic character traits, we want to support our children in meeting whatever goals they set for themselves, while coaching them to always be safe and carry realistic expectations!
Step 4: Education
We always strive to be honest about our daughter’s areas of challenge and to give her the tools needed for overcoming them. I believe that the job of every parent is to teach our children how to thrive in the world in which we live. While the desire to have the world simply accept our children as they are is understandable, being a parent means teaching them to adapt and successfully navigate life in our given societal structure in order to achieve their goals. It seems wrong and unfair to give up on these goals simply as the result of an autism diagnosis. Tolerating frustration, putting the needs of others ahead of your own, bearing temporary and minor discomfort in the effort to successfully connect and communicate with others, are necessary sacrifices we all make in order to live as members of our society. We expect nothing less from our daughter.
Of course, this requires that she have the skill and self awareness to recognize her own needs and decide how to set and maintain the necessary boundaries when those individual needs clearly outweigh the needs of others. It has been up to us to try to understand her needs and teach her how to both stand up for herself when necessary, and to respect and defer to the feelings of others when that is required. As I said, it’s a balancing act! This has meant explicit teaching of numerous social norms (eye contact, taking turns in conversation, faking interest in someone’s boring story, showing interest in someone without overwhelming them with affection, etc) and also respecting her needs wherever she is in her learning process. We never forced her to look us in the eyes or demanded she stop stimming, but we did frequently remind her that it helped us to know that she was processing our communication if she was looking at us and that her stimming could distract people from her words. We acknowledged that adapting these behaviors might not always be easy or comfortable for her, but that it served a purpose that she might want to achieve. We also made sure to talk to her about the importance of her own comfort and that she could look at someone’s forehead or the bridge of the nose as a compromise, and find appropriate fidgets or excuse herself in situations where she felt overwhelmed and needed a sensory break. This is all a part of that balancing act that requires awareness of one’s own needs and respect for the needs of others, and lots of practice identifying which takes priority in a given situation.
Step 5: Appreciation
While recognizing and addressing her challenges, we also always strive to recognize and embrace our daughter’s strengths! Like most parents, we always want to celebrate our daughter’s accomplishments. When she was young, every hard-fought milestone was cause for celebration, and we celebrated with her. We cheered her perseverance, and we cheered her mastery of every skill. In a strange way, it’s almost as if the thrill new parents experience with their young babies was extended over several years in our family. Things slowed down for us and every milestone was noticeable for the first 8 to 10 years of Micaela’s life. The typical firsts were celebrated- rolling over, first tooth, first step, first solid foods. But we also clearly remember and celebrated those firsts that many people may lose sight of in the usual blur of developmental stages. We clearly remember her first question (at around 4) and the first time she sat still for a hug. Even her first tantrum was celebrated since it was so rare for her to assert herself.
We remember her first play date, first sleepover, the first time she purchased an item on her own, the first time she asked for information in public without us standing right next to her, the first time she went to pick up a grocery item in the store and we trusted that she could handle herself and come right back safely, and the first time she independently walked around the neighborhood with a friend.
Beyond celebrating these accomplishments, achieved through lots of teaching, practice, and scaffolding, we embraced Micaela’s natural strengths. As a young child, that meant admiring her amazing abilities to read fluently and spell, even as a toddler with severely limited verbal communication skills. It meant appreciating and feeding her fascination with figurative language, sarcasm, and language-based humor, none of which came naturally to her, but all of which fascinated her and made her laugh. It meant answering endless questions from a child who wanted to know the meaning of everything and was, fortunately, never embarrassed to say ”I don’t understand” and ask “What does that mean?” It meant recognizing that her early echolalic speech and later ability to memorize dialogue might contribute to success in the realm of children’s theater, which has served her well by providing a creative outlet and social connections that she enjoys and cherishes to this day. Finally, it meant supporting her when she said she wanted to write a memoir about growing up with autism, despite us having no idea whether or not she possessed the level of writing sophistication required to produce an entire book that would actually make sense.
First we told her to go for it, and we gave her lots of time to write. Then we got her some adult support (in the form of a teacher and a professional writer as mentors), and then, when we realized how good her storytelling actually was, we helped her to self publish her story. The resulting book, Autism Over the Years: A Twelve Year Old’s Memoir, can be found on Amazon or purchased from her website, micaelaellis.com!
After she published her memoir, we helped connect Micaela with opportunities to tell her story to audiences at libraries, elementary schools, and universities. It still amazes me that language-based communication has turned out to simultaneously be my autistic daughter’s greatest challenge and her greatest strength! Her writing is wonderful, and just keeps getting more sophisticated, and her ability to present to an audience is so impressive when we consider where she started with her language skills. At this point, when she tells us that she wants to write professionally and be an advocate for people with autism, we are completely confident that she will accomplish her goals!
Embracing the Result
A lot of thought and effort has gone into getting our family to this point. As parents, we still have many worries about how our overly trusting and honest-to-a-fault daughter will fare in this big, and often unkind, world. But, we feel good about where we are, fifteen years after a diagnosis of autism forced us to make serious decisions about our roles and our goals as parents. For our family, it started with acceptance which was followed by honesty, understanding, optimism, education, and a genuine appreciation of our daughter’s many strengths. These are the steps that have taken us along our path to a place where our autistic daughter, and our entire family, can thrive!