Jerry and Rebekah McNair's son, Jacob, was 3 when he was diagnosed with autism. Like many parents, the McNairs knew little about the disease.
"At first, the diagnosis was very scary and we did not understand what that meant for our son and family," says Rebekah McNair, who lives with her family in Ringgold, Ga. "We have learned to take things day by day."
According to the U.S. Centers for Disease Control and Prevention, autism spectrum disorder is a developmental condition that impairs communication, behavior and social interaction with varying degrees of severity. The centers say that, for every 68 American children, one will have autism spectrum disorder.
Jacob is now 17, but when he was 12, his parents were faced with an issue that had not entered their minds — puberty.
Typically, puberty begins around age 12 for girls and 14 for boys. The physical changes in boys include deepening of the voice, growth spurts, the start of facial hair and a broadening of the chest and shoulders; in girls, there also is a growth spurt plus the development of breasts and widening of the hips. Development of secondary sex characteristics include the onset of menstruation in girls and ejaculation in boys, according to the CDC.
For many children, the onset of puberty not only changes their body, it changes their behavior. For boys, it can lead to clumsiness, aggression, moodiness and sleeping more; for girls, moodiness and more sleep are common, but the onset of menstruation can cause premenstrual syndrome (PMS) and induce headaches, back pain, sadness and bloating.
Obviously, puberty can be difficult for many kids; autism simply adds another layer of confusion to the process.
"The brain does not tell the body to stop growing if the boy/girl's developmental level is younger than their age," reports the Autism Society of America.
Alyce Benson, clinical director at the Chattanooga Autism Center, says there is no specific autistic personality, so everyone who has the syndrome will act differently in different situations.
"People with autism share similar characteristics but, because of different personalities and interests, they are all very different," she says. "It is like assuming that every person with depression suffers from the same symptoms and struggles."
The changes in their son took the McNairs by surprise. Because Jacob couldn't adequately express his feelings about the mental and physical changes he was experiencing, the McNairs were, at first, unaware of what changes he was undergoing.
Jacob didn't outwardly express the confusion he was experiencing when puberty first hit, Rebekah McNair says. However, when she and her husband began noticing the physical changes, they talked to him about what was going on physically and mentally. Though Jacob didn't show any specific behavioral changes, he did have questions about puberty and eventually understood what was happening.
"It was confusing and felt new," he now says. "But I felt like my parents would answer any questions that I had."
Having gone through the process with Jacob, Rebekah McNair says: "I advise parents to talk to their children but also listen and answer their questions honestly and carefully."
Benson says preparation is key for the parents of autistic children going through puberty.
"The more prepared they can be ahead of time about what changes to expect the better," she says. "It is important to have open communication with children and/or identify another adult that the child can talk to if they aren't comfortable talking to a parent.
"Children with autism spectrum disorder tend to be less likely to ask questions, so it is important for parents to check in with them often about changes they are going through and asking specific questions related to puberty," she adds.
Benson, who provides individual, family and group therapy to children and adults with autism, says puberty "is confusing and overwhelming for all adolescents."
"Depending on the adolescent, they can be much more open and inquisitive about what is happening to them while others may be more reserved and shy about asking questions," she says. "This is no different for adolescents with autism."
Rebekah McNair suggests going to the website for Autism Speaks, which offers ways to teach autistic children about puberty through visual cues.
"So many parents feel others misunderstand their child because the assumption is that all persons with autism are similar," she says. "In fact, there is a saying in the autism community that, if you meet one person with autism, you meet only one person with autism."
Families with an autistic child can find support to help both the affected child and the other family members, Benson says. And help often is what's needed, she says.
"Often parents describe their support as teams of friends, therapists, school personnel, etc., that are supportive of the person and family. We all can benefit from our own teams," she says.
Autistic adolescents, like most teens when the body undergoes physical changes, become interested in companionship, she adds.
Fortunately, Jacob's transition through puberty was mostly uneventful. But that's not always the case for other children with autism.
In a 2015 report on CNN, Diane Brown, of Sherrill, N.Y., shared a much different experience with her son, 14-year-old Alexander, who is severely autistic.
When he was going through puberty, Alexander was confused, moody and frustrated, the report said, but his transition was especially difficult not only for him, but for the entire family of six. He rarely slept through the night, getting up at all hours and wandering through the house, taking showers or throwing tantrums. And he began lashing out physically.
The Browns — his parents and three siblings — said they all have "war wounds" such as scratches, bite marks and bruises from Alexander. Even the family dog was in danger when he got in one of his moods, the report said. His behavior took a heavy toll on his mom, 45, who said she was averaging about four hours a sleep each night.
"I would love to be in Alexander's head just for a few hours," she said in the report. "He's having a hard time going through puberty right now."
It's a pattern the Browns had experienced before. Alexander's brother, 19-year-old Connor, also severely autistic, exhibited similar behavior when he went through puberty. In fact, Connor became so aggressive, the Browns had to admit him to a 24-hour care facility.
"We sat on the back step and we cried," Brown said in the news report. "It was a realization at that moment that this was something that we had to do for all of us."
Benson advises families to seek support and advice if their child is experiencing a severe behavioral change.
"It is important for families not to feel isolated and to be able to reach out to others who understand what they are going through. Then they are able to seek support and advice," she says. "It can also help to work with the person with autism to learn coping strategies to deal with the changes in emotions and to gain a better understanding about how puberty affects them physically and emotionally."
Rebekah McNair says she hopes Jacob can one day live a life that makes him happy.
"He would love to have a girlfriend and talks about it often," she says. "I would love to think he will find a companion."
Benson says that's certainly not out of the question.
"Just because a person has a neurological disorder or disability, it does not change this desire to live independently, work and have their own families," Benson says. "Most people with autism seek meaningful relationships and want to marry and have families of their own.
"I know many adults with autism who are married and have children," she says. "They are working as teachers, computer programmers, accountants, nurses, doctors and engineers."
Contact Karen Nazor Hill at firstname.lastname@example.org.