When Evan McCormick forgot his son's lunch at home, he went back for it after dropping him off.
He arrived back at school and walked up to the classroom to find the lights were off. In one corner of the room, the teacher sat under a reading light with a book, surrounded by all the children. All the children except his 3-year-old son Elias.
McCormick finally spotted Elias in the far corner of the room, playing alone behind a bookshelf in the dark.
Incensed, the adoptive stay-at-home father called the school and demanded a meeting with its administrators.
“My initial thought was, 'She's ignoring my child because he's black. He's the only black child in there.'" He walked into the meeting prepared to raise hell. Instead, he left in tears.
McCormick had begun to notice small things about a year prior. Elias's temper tantrums were intense. He increasingly resisted going to school. He didn't seem to be speaking as much as he should.
When McCormick researched the symptoms online, autism would frequently appear in the results. Still, doctors said Elias was developing normally. McCormick and his husband, Jeremy Goldbach, didn't have enough experience with babies to really know what healthy development looked like.
“This was our first child," McCormick says. “We didn't know what was normal for temper tantrums."
Sitting in the meeting, prepared to accuse the school of failing his child, McCormick heard it from someone else for the first time: Elias might be showing early signs of autism.
The couple was devastated.
“When somebody turns the light on all of these things that we thought were so small and you think, 'How was I so stupid? How did I not see this?'" McCormick says. “You feel a lot of guilt. I think my husband did too."
In Search of a Diagnosis
Testing a toddler for autism is like trying to get on the “It's a Small World" ride at Disneyland on Memorial Day weekend. As the definition of autism has broadened, so has the number of parents concerned enough about their child's development to seek further testing. Facilities can't keep up with the demand.
The couple was desperate for answers, but all they could do was get in line for an appointment. In the meantime, they transferred their son to a reputable preschool where they hoped he would get more individualized attention.
“The new preschool said everything was fine for about a month," McCormick says. “And then they called and said, 'We want to bring somebody in to observe him.'"
Before a diagnosis — before screening, even — the couple faced a recommendation from the school to hire a therapeutic companion for their son. But without doctor's orders, they would be paying about $8,000 per month for the service out of pocket.
“I cashed out my 401(k)," McCormick says. Their daughter, Holland, was just a month old.
“It was a very tough time," he says. “We weren't getting a lot of sleep. We had a new baby. I think I probably cried every day. I tried to cry just when I was alone because I didn't want to cry in front of my son."
The couple was in very different places of acceptance. While Goldbach hoped for any outcome but an autism diagnosis, McCormick searched for confirmation of what the school – and his gut – were telling him.
For a while, Elias seemed to do better at his new school with a therapeutic companion. The time for testing finally arrived.
“He did three days of testing and they said, 'Your son doesn't have autism. He has the precursor to conduct disorder and mixed expressive-receptive language disorder,' " McCormick says. That's medical speak for antisocial behavior and trouble understanding language and expressing oneself with language.
“My husband was really happy at that time," he says. “I knew that [it] was not true. My son had started displaying all the telltale signs of autism."
From a Pediatrician's Perspective
People with autism typically experience delays and impairment in social skills, language, and behavior.
Autism can look wildly different from one child to the next. No one knows for sure what causes it, but researchers generally agree it can be caused by either one or a combination of genetic and environmental factors.
Dr. Antwon Chavis, a pediatrician who writes medical articles for Gays With Kids, grew up with an autistic brother. In his opinion, parents have a unique opportunity to notice the small things happening in a toddler's life that can point to developmental problems.
“Parents have this awesome opportunity to spend all this time with their kids and be the first ones to see things that are wrong," he says.
As a pediatrician at Doernbecher Children's Hospital in Portland, Oregon, he typically screens kids for signs of autism two or three times between the ages of 6 months and 3 years. Basic screenings by a child's pediatrician help recognize a need for further evaluation by a specialist.
“It's just a series of super awkward questions: 'Can your child place a Cheerio in a cup? Does your child have friends?'" Chavis says. “A lot of times, parents are asking me questions before I catch anything with screening."
Early intervention can make an immense difference in the life of an autistic child, so it's important that parents be observant of their child's behavior and take note of missed developmental milestones.
Many parents worry about autism when another problem altogether is to blame for their child's abnormal behavior, says Chavis.
Other developmental delays and disorders that become apparent during a child's first years share symptoms with autism. A hearing or visual impairment, speech delays and a host of other problems can look like initial signs of autism.
Documenting and treating the condition that is diagnosable – say, a speech delay – can provide some clarity.
“A lot of times in the process of working on speech, working on all these other things, an autism diagnosis can become easier," he says. As it often turns out, the child does not have autism.
On the rare occasion Chavis is the first to detect signs of autism, he is tasked with talking through what he's seeing with the parents.
“I'm looking at a parent looking at their kid, and they're all excited," he says. At that moment, he knows a parent envisions a typical childhood for their kid, with sports and school dances.
“What's devastating for me as a doctor is looking at the child and not seeing the same thing. And having to say, 'I see something different,'" he says. “That's a bad day."
Hesitance on the part of doctors to refer cases unnecessarily strains relationships between doctors and concerned parents, but still, Dr. Chavis doesn't take the conversation lightly. An autism diagnosis can radically improve the life of a child who does have autism. For a child who is not autistic, it can be devastating.
“If their child isn't really autistic, they're just quirky, then I've labeled them with something that's going to follow them forever," he says.
“It's hard, because mother's intuition – parent's intuition – and doctor's intuition aren't always the same. If there's a day where it's moving a child toward screening, I have lot of say. And a lot of the time, I say, 'Let's just wait.'"
Elias, McCormick and Goldbach's son, continued to show signs of autism after receiving a diagnosis to the contrary. The parents tried to view his behavior in light of his diagnosis at first.
“The school had told us he had become fixated with the vacuum," McCormick says. Perhaps, he thought, this was a hopeful development. “It was, like, this big machine – which is what little boys love. I had written this whole narrative about how this was a great thing."
Then, the vacuum became Elias's obsession. McCormick once again became convinced his son had been misdiagnosed.
“I did research and found out that African-American boys with autism are misdiagnosed fairly often with conduct disorder," McCormick says. (Here's a link to a study discussing racial disparities in autism diagnosis.)
He sought a second opinion. This time, doctors agreed – before they even began testing Elias.
What Comes After the Diagnosis
Parents of children diagnosed with autism should seek a thorough medical evaluation by a doctor experienced in working with autistic patients, says Denise Fulton, spokesperson for the Autism Research Institute (ARI).
Health problems that often accompany autism, like chronic gastrointestinal distress or seizures, easily slip under the radar, according to ARI's “Advice for Parents of Young Autistic Children."
Acute sensitivity to light, sounds and other stimuli can also be hard to identify in kids with language delays.
Fulton's son was suffering seizures that went undetected even after his autism diagnosis. His stomach problems had become so acute he had bloody sores on his body, she says, yet his doctor insisted everything was normal.
“I kept telling my doctor and she just said, 'Oh, he's just goofing around,'" Fulton says of what she later learned were seizures.
“That interrupts everything. It interrupts sleep. It interrupts their ability to sit in a chair during story time. They don't want to eat, or sometimes they eat too much. It becomes a big problem."
It took over a year for Fulton to find a pediatrician she and her son trusted.
Getting to the root of the child's distress may require some persistence from parents, she says. She looked for recommendations from other parents online in her search for a pediatrician.
Parenting a Child With Autism
AJ Gomez and his husband, David Woosley, are raising their 7-year-old granddaughter with autism. In the year and a half since Tilde came to live with them, she's made huge strides in learning to communicate with her new family.
“When we first got her, she didn't speak. She didn't make eye contact with you. She really wanted to just be off by herself," Gomez says. “Now she interacts with us."
He's most proud of a moment a few months ago when, out of the blue, she approached him to speak her first complete sentence on her own.
“She came bounding into the bedroom and she said, “Papa, I want blue popsicle, please."
Gomez and Woosley are learning as they go. To find out what she wants or needs, they often have to give her some options for sentences to repeat back to them.
“We try to get her to say, 'May I have this?' or, 'May I have that?' It's just repetition of short sentences constantly, day in and day out," Gomez says.
When Tilde recently became ill, the couple was at a loss.
“She was sick for two days last week but we didn't know [what was wrong], other than that she was throwing up," Gomez says.
The couple has developed a strong relationship with specialists at Tilde's school and take their guidance for how to work with her at home.
At school, she spends most of the day in a traditional classroom. She loves running around at gym with her peers. She leaves the classroom for special therapies – speech, language, math, music, occupational and physical – throughout the week.
“She's done a complete 180 from when we first got her to now," Gomez says. Still, every day comes with new challenges.
“You never know how she's going to wake up, how she's going to bed." When her behavior goes south, Gomez often just waits it out rather than trying to salvage the situation.
“When they're in a bad mood, just leave them to themselves until they're back and start the interaction again," he says.
* * *
David Stephens, a single gay dad, has joint custody of Aaron, 11, and Julianna, 10, with his ex-wife. Aaron has autism and suffers from early-onset childhood depression.
“He's very aware of himself and he's very articulate about it so he feels like there's something wrong with him," Stephens says. “I have to spend a lot of time talking with him and telling him [autism is] a gift, not a crutch."
To help his son understand what he means, Stephens talks to him about his own experience of coming out as a gay man – overcoming shame to embrace who he is.
When Aaron was young, he behaved very differently from his younger sister. Julianna began talking, walking and potty training before Aaron began to speak. He often ran and slammed into walls.
“His sense of touch was under-stimulated. It takes more for him to feel," Stephens says. “I think he was just trying to feel something. He could touch things that were hot and not feel anything. He could slam his head against the wall and laugh."
Aaron liked his toy cars but didn't play with them. He just lined them up in neat rows and became despondent if his sister moved them or Stephens tried to clean them up.
Stephens and his then-wife finally took Aaron to a neurologist when he was 3½. Aaron immediately crawled under the doctor's desk and hid when they arrived.
The neurologist took just one look at him and said, “He's autistic." Stephens and his wife both teared up.
“It's a tough thing for a father or a mother to accept that, you know, this kid is going to be different," he says.
All the literature talks about what his son would never be able to do, but Stephens sees it differently. His son has many interesting, beautiful qualities, some as a direct result of his autism.
“When he was diagnosed, the neurologist said, 'Don't expect him to talk. Don't expect him to be social.'" And it's true that when other kids want to go out and kick a soccer ball, Aaron prefers to stay in.
But he does want to talk. Passionately focused on a few interests, he dives into them with fervor and learns everything there is to know. Then, he's eager to tell his dad about what he's learned.
At 7, before he could even properly pronounce the word “psychology," he began deeply analyzing the psychology of his favorite video game at the time, “The Legend of Zelda."
Stephens quickly understood these conversations are the ticket to a meaningful relationship with his son.
“From about 7 to about 10 years old, if I didn't show any interest in what was important to him, I was dead to him," Stephens says. So, he learned everything he could about video games.
“You have to have a lot of patience and you have to pick your battles with these kids," he says. Whether it's letting the toy cars stay on the floor or engaging in a somewhat one-sided conversation, he tries hard to understand the world from Aaron's perspective.
“Sometimes something that's nothing to you means the world to them," he says.
Life as the “Well Child"
Dr. Chavis grew up with an autistic brother, Adrian, who is two years his senior. He remembers the first time he really understood Adrian was different from other kids.
He was in kindergarten, playing outside with his brother and the other kids in the neighborhood. He doesn't remember what the game was, but he does remember his brother didn't understand what was going on. The other kids all gave Adrian a hard time.
“My dad came over and pulled me aside. I'd never seen this affect in him before. He was very stoic and matter-of-fact in saying that I could never make fun of my brother again; that he was different," Chavis says.
That was the day he became his brother's keeper.
It would be years before he knew what “autism" meant – he remembers a time at school he told a classmate his brother was “artistic" and felt embarrassed that he got it wrong – but his parents did help him understand how his brother was developing differently.
“The older we got, the farther away we would get in terms of our development. At some point I needed to know that," he says.
Sometimes he felt envious of Adrian. Sometimes he resented the extra responsibility of helping care for him.
“I had to come home early because I had to be ready for Adrian when he got home," he says. “I went from envious to being frustrated. And then I felt bad for being frustrated."
Now, as a pediatrician, Chavis knows all these feelings are normal for the typically developing sibling of an autistic child. He's written two blog posts for Oregon Health & Science University to help others understand what siblings of autistic children need: “A Letter From One 'Well Child' to Another" and “11 Things Your 'Well Child' Wants You to Know."
In the letters, he speaks to the feelings of guilt, anger and confusion kids feel about their autistic sibling and helps parents understand how to nurture both children.
“'Well-Sibling Syndrome' not only encompasses the feeling of being 'forgotten' because you're lucky enough to be healthy, but also the guilt you feel because you're lucky enough to be healthy, the burden of becoming an adult before your time, and the struggle to identify as more than 'the other child,'" he writes to parents.
To kids, he writes, “Your parents see what you do for your sibling, and they are so very proud of you. And they don't always know how to say it. They notice when you stop what you are doing to smile at them, to give them a hug or a kiss, or a hello … They even know about that time you got in a fight with the kid next door to protect them. And they are so thankful for you. You are so helpful to your parents, even if you don't know it. It takes a special person to do your job, and no one on earth could do it like you do."
Even as he counsels others in how to parent kids like he was, Chavis faces a new challenge: being the adult sibling of an adult with autism. Chavis wonders what will happen when his parents can no longer care for Adrian. He stashes money and plans for the future with the knowledge he will one day, again, become his brother's keeper.
And still, he struggles to make total peace with being the “well child."
“The guilt that sometimes you feel when sometimes things are so easy for you and not for them – I'm 30 years old and for every birthday candle, for every star I wish on, every time I blow an eyelash from my finger, I've always made the same wish," he says. “I've always wished that my brother would not have autism."
Self-Care for Dads
Since every kid experiences autism differently, it can be difficult for parents of autistic children to relate with one another's experience, says Fulton. And, each stage of the child's development presents new challenges.
“There's a huge heterogeneity in the disorder. Sometimes why parents don't connect is, they're not experiencing the same things," she says.
When she has connected with other parents, sometimes they just disappear, leaving her wondering what she did wrong.
“I have to remember for myself not to take it personally when a family with autism shuts me out. Who knows what they're going through with their educational plan," she says. “It's easy for all of us to sort of externalize what's causing that but a lot of that just has to do with that process of realizing, 'This isn't going as expected.'"
For herself, she has found getting respite care outside of school hours provides much-needed mental health breaks.
Evan McCormick, Elias's dad, has found that autism family support groups in the Los Angeles area cater specifically to moms.
“I wanted to join as many groups around me as possible to get as much fellowship and resources as possible," he says. “Most of them aren't super happy about a dad joining. One group actually told me they didn't want me to watch them breastfeeding."
Gomez, Tilde's granddad, says communicating with his husband about his day's stresses goes a long way in both keeping his sanity and nurturing his relationship with his spouse.
“He just sits there and he just listens," Gomez says. And that's enough. “Just having somebody there that can kind of reel you in and say, 'It's okay. We've got this. We're going to work on this together.'"