Level 1 Autism: A Mother’s Advocacy Amid an Invisible Disability
Advocacy, frustration, heartbreak, and joy, these are the four words that Maeve uses when reflecting on her son Peter’s childhood, and their journey towards receiving his level 1 autism diagnosis. In 2000, he was 14 months old when he started walking. This seemed harmless enough; developmental stages are just that, “stages,” right? When Peter’s second birthday rolled around, he was barely babbling, and the peculiarities Maeve had been dismissing grew into real worry. She started thinking back to her son’s birth. The doctors did say he had “floppy baby syndrome” or hypotonia (low muscle tone). But they never said what to do about it or what it could mean. If the doctors didn’t have anything to say about it…it must be nothing, right? Maeve couldn’t shake the mother’s intuition that powered the wheels turning in her brain, ultimately leading her to have Peter evaluated for early intervention services.
With low scores in fine motor, gross motor, and speech, the therapies began. Maeve dove headfirst into what became like a full-time job in addition to her actual job and raising her other two children, all without a partner. She studied American Sign Language, and together, she and two-year-old Peter communicated about his needs for the first time. She got out her camera and had rolls of film developed depicting Peter’s favorite, most necessary objects. Without realizing it, she created what we now know as a PECS (Picture Exchange Communication System) and “first, then” visual schedules. She followed the Wilbarger Protocol religiously, which entailed using firm pressure with a soft-bristle brush all over his body every two hours to increase his tolerance for sensory input and regulate his anxiety. She participated in his occupational, physical, and speech therapies, each occurring twice a week. She filled sensory bins with rice, guided Peter’s little hands to place Mr. Potato Head’s hat on his head, watched him with intent but hopeful eyes while he tried relentlessly to put a square block through a round hole, all the while repeating to herself, “If we work hard enough, he will grow out of this.”
Peter began forming very strong attachments to inanimate objects. One particular spoon from the kitchen drawer was to him what a treasured stuffed animal is to another child. Later, a blue beach sandal became his source of comfort. For a stretch of time, a distant family friend’s Christmas card became so important to him that he slept with it every night and cradled it like a blanket. Ultimately, his most treasured and long-lasting lovey was a box of dry macaroni noodles. He would hold it proudly in front of him in family portraits, which ended up looking more like Barilla advertisements. This box of uncooked pasta began to wear at the cardboard corners and bend where he hugged it. Maeve went through rolls of tape, as Peter had worn small holes in the box, and little pasta pieces started to fall out. She giggled softly to herself because, really, was it much different from sewing loose stuffing back into a teddy bear? When people looked from Peter to his box of macaroni to Maeve with inquisitive, judgmental eyes, she let it roll off her shoulders. What others labeled a “problem” didn’t become one until Peter started attending the public integrated preschool program.
In 2002, Peter’s teachers insisted he keep his box of macaroni in his backpack. They were acting according to what were best practices at the time. Today, if I had been in their shoes, I would have considered what impeded Peter’s ability to attend to the curriculum more: a box of macaroni sitting on the corner of his desk, or the sadness and anxiety that overcame him from being without it. School became increasingly challenging. Peter met academic standards, but the classroom environment caused severe internal distress. The sound of his peers typing away in the computer lab was like long, sharp fingernails dragging across the surface of his brain. Rubber balls bouncing in the gymnasium felt like being at the bottom of an enormous ceramic bowl, unable to crawl out and escape the echoing vibrations. Maeve found green foam earplugs for Peter to wear to school to try to combat this. It worked, for a time. Peter used every bit of strength and energy he had to mask throughout the school day, so no one knew the agony he was in. He wanted to please his teachers; he wanted to be “good.” When he asked the other kids to play at recess, it felt like he was in a foreign country, and they all spoke a language he didn’t understand. In 2004, because of his inability to read social cues, the school opted for retention, and Peter repeated first grade. Maybe this would “fix” it?
It was clear that being held back had no impact on his ability to connect with other children, and he wasn’t growing out of his sensory sensitivities anytime soon, no matter what grade he was in. Maeve clutches at her chest as she recalls the heartbreak of knowing her child was disliked by the other students. One afternoon, after repeated attempts to reach one particular classmate, Maeve overheard Peter say into the landline phone, “Oh, okay, I’ll stop calling you. I’m sorry. I just like you and want you to be my friend.” His tone was cheerful because he didn’t understand why the other boy had told him to stop calling. Peter ran home crying many afternoons after playing Wiffleball with the neighborhood kids. When Peter runs, he hums, which the other kids teased him for. He couldn’t help it and didn’t understand what the big deal was. He and Maeve now know that when he hums, he is stimming.
Everyone’s birthdays came and went, with no invitations extended. Finally, Peter was invited to a sleepover party, and when he rang the doorbell with his sleeping bag under one arm, his box of macaroni under the other, and a huge smile on his face, the classmate opened the door with a look of surprise.
“You weren’t invited to this,” he said.
His mother rushed to his side and whispered words shot from the corner of her clenched teeth, “I invited him. Whole class, remember? Be nice.”
Maeve batted at the air with her hand, “It’s okay, we’ll head home. We’ll watch a movie together at home, okay, Pete?”
The boy’s mother insisted, “No, no, come on in, Peter!”, which he did, with sheer joy, and zero understanding that he was not emotionally safe in that environment.
By 2006, Peter was refusing to attend school. The work it took to endure sensory overload was too much to bear. No matter what Maeve did, she could not get him to go. He was becoming too big for her to carry, kicking and screaming, to the car. To “solve” this, the school principal started coming to their house and driving Peter to school himself.
“It felt like the principal was the truant officer, and I was the neglectful parent. It was so lonely. I felt so unseen and so misunderstood. Their attitude towards me was that I wasn’t trying hard enough to parent him; what they didn’t know was that they were trying too hard at the wrong strategy. Because Peter’s intellect wasn’t affected, no one believed me that he had a disability. They just thought I was a bad mother. The faculty was unhelpful to the point of being unkind”.
“I took Peter to a neuropsychologist, and that’s where we finally learned that he has level 1 autism. At that time, they called it Asperger’s Syndrome.”
Level 1 autism is often described as an invisible disability. Children with level 1 autism may be highly verbal, academically typical, and deeply curious, which can make their challenges easy to overlook. Because they do not always fit the narrow picture people expect autism to look like, their struggles are often misunderstood or dismissed entirely.
What is not immediately visible is the effort it can take to move through a world that feels too loud, too fast, or emotionally confusing. Sensory overload, difficulty interpreting social cues, and the exhaustion of constantly trying to fit in can quietly shape a child’s daily experience. When these challenges go unseen, children are often labeled as difficult, sensitive, or poorly behaved, rather than supported and celebrated for who they are.
For families, understanding level 1 autism is not about finding a box to put a child in. It is about finally having language for what they have always known: that their child experiences the world differently, and that difference deserves understanding, accommodation, and compassion from the people providing special needs care.
“Getting this answer was some of the most intense relief I’ve ever felt. Feeling like I finally understood Peter, feeling like there was an answer, feeling like a doctor recognized this for what it was, was a godsend. I also thought that with a diagnosis in writing, surely the school would give him an IEP.”
Maeve pleaded her case to the special education teacher, the school psychologist, and the principal. She begged them to see that he needed accommodations.
The principal sighed, “Maeve, he’s smart, he recited every Oscar-winning director since 1950 to me in the car this morning. He doesn’t need an IEP.”
“This isn’t about that. He still needs help, even though he meets your definition of ‘smart.’ He has these emotional outbursts that I can’t pull him back from,” she replied.
“So, he’s a little old to still be having tantrums. Sounds like there’s not enough discipline.”
“But the other kids, they don’t get him. He doesn’t have any friends.”
“How do you expect him to thrive socially if you send him to school looking like Shrek?” This comment, referring to Peter’s green earplugs, was a moment of reckoning. It knocked the wind out of her, like a Beckham-kicked soccer ball to the stomach, and if it had been socially acceptable in the moment, Maeve would have doubled over in tears. And even though this was all true of her experience as his mother, Peter loved Shrek…and he probably would have taken it as a compliment. Maeve decided to start sending Peter to the local charter school.
“Sending Peter to the charter school was one of the best ways I could have advocated for him. It was so diverse and so inclusive. Every child was recognized for what made them special and given support that matched their needs. The teachers and staff put Peter on a 504 plan that provided accommodations for his low-support needs, and all of a sudden, he loved going to school. The school culture allowed for different kinds of strengths. Mostly, Peter was just so excited to have friends for the first time in his life. For his 13th birthday, every classmate showed up to his movie theatre party, including a couple of kids we didn’t even know. He wanted to see “Little Fockers”. I didn't care how much it cost to bring all these kids to the movies; I was so happy he had friends. When we got in there, and the movie started, I realized just how inappropriate it was and couldn’t have sunk further into my seat if I tried. I was so scared to tell the other parents that I had brought their children to this movie and thought I’d ruined these friendships for Peter before they even started.”
Maeve trembled with nerves as the children’s family cars started to appear outside the theatre to pick them up. She introduced herself to each parent and, fearfully, admitted that the movie's humor was quite adult. She braced for impact, and, to her surprise, all the parents started laughing. One father patted her on the back and commiserated, “We’re all just doin’ our best.”
“Sending Peter to the charter school was one of the best things I could have done for him and for me. I’m not saying it’s the answer for every child with autism, but it was the answer for him. What our kids need is for us to be brave enough to say ‘forget this’ to everyone who tries to force them to succeed within societal norms stacked against them. Not only was Peter safer with these kids, but I was safer with these adults.”
Advocacy, frustration, heartbreak, and joy, the first three words appear and reappear throughout Maeve’s motherhood, like a tide going in and out, but the joy is steadfast.
“Peter’s insistence on seeing the good in people, even the ones who are unkind, is my favorite part of being his mum. It makes him vulnerable, but it also makes him a really good friend. One year, no one showed up to his birthday party. It was crushing for me. But Pete, he just hopped on his bike and rode around the neighborhood, knocking on doors and asking neighbors to come to the house for cake. Another part that I love is the depth of his passion for his special interests in movies and Boston sports. At seven years old, he was reciting statistics on both that most adult enthusiasts didn’t know. When he was in Little League, he wasn’t exactly a star player because of his low muscle tone. But, while he sat in the dugout, he educated his teammates on every Red Sox statistic, whether they wanted to know it or not. At the end of the season, the coach awarded superlatives, and Peter was given ‘Nicest Kid in Baseball’. I’m still so proud of that. To this day, at 28 years old, he really is the Nicest Kid in Baseball.”
At the end of our conversation, Maeve and I began discussing what she wanted people to know about being a parent to a child with special needs.
“I wanted other people to know how hard it was. I also wanted them to see that Peter is just as beautiful as he is quirky; the depth of his heart is sort of inexplicable. If I could speak directly to parents of children with special needs, I would want them to know that I see how hard it is. I would want them to know that all the time, I think about how I would have done things differently if I’d had more information. Mostly, I would encourage them to take note of the joy in their day, too. I would tell them, ‘You just need one good friend who sees you, and a therapist, so you don’t tire out the one good friend’.”
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