Meet the Macleans: The SSC@IAN "First Family"
A mother tells the story of her autism journey...and why participating in research is so important.
Leta Maclean responded right away when she received an invitation to participate in the Simons Simplex Collection (SSC) project -- a major autism research initiative collecting genetic samples and family histories from families with just one child who has an autism spectrum disorder (ASD). With an unaffected mother and father (Leta and her husband, Kim), an unaffected sibling (daughter Isabel), and a child who is "on the spectrum" (son Ian), the Maclean family was a perfect match for the SSC.
Leta was also quick to act when she learned that the Simons Foundation and the Interactive Autism Network (IAN) were partnering to create an online autism research ‘home’ called SSC@IAN for the over 2,600 Simons Simplex families. "I was so pleased to hear we are SSC@IAN’s First Family," she told us during a recent interview about her family’s experiences.
Sharing Through Research
Having been through her own journey with autism, Leta felt that participating in autism research was the best way she could help others who are walking the same road. She actively sought out studies and enrolled in projects at the University of California, San Diego (UCSD), the University of Wisconsin’s Waisman Center, and others. In addition, she joined the IAN Research project in 2008, partly because IAN informs families of studies in their area. "I had to join when I realized it was named IAN — like Ian, my son!" she said. It was through IAN that she learned about the Simons Simplex Collection’s bold plan to create a bank of DNA samples and accompanying family histories that will permit researchers to explore multiple questions in autism for years to come.
Leta remembers the day of her family’s Simons Simplex appointment, which began with a trek from San Diego to the University of California, Los Angeles (UCLA). In the morning and early afternoon, Ian was evaluated by the UCLA Simons Simplex team while Leta and Kim completed questionnaires and interviews, sharing every detail about Ian’s development, behavior, strengths and challenges, as well as their family histories. Everything went perfectly until, late in the day, it was time for family blood draws.
When the first attempt to get the needle into Ian’s arm wasn’t successful, he began to have a meltdown. Determined to see the process through, especially after the long drive and all the effort put in that day by both family and researchers, Leta asked everyone to stop the procedure while she helped Ian regain his composure. "We had to do big time negotiating with him, but the people at UCLA were very patient, and we finally convinced Ian to cooperate," she said. Luckily, the UCLA technician got the task done quickly and skillfully.
Now, that blood sample, together with those provided by other SSC families, is part of one of the most important resources in autism research, and multiple scientific findings have been possible because of it.
An Autism Journey
There was a time Leta and Kim knew little about autism, let alone autism research.
They had their daughter Isabel in 2000, and little brother Ian arrived two years later. Everything seemed fine at first because Ian was such an easy baby -- the type of baby who would just keep himself occupied when he woke up in his crib. There were some troubling signs looking back, however. "At an early age, Ian was fascinated by ceiling fans," Leta confided. "If he got upset about something, a ceiling fan would always calm him. If he had a toy car or bicycle, he would turn it over and spin the wheels. He would also turn in circles and spin himself."
Like many parents of children with an ASD, Leta didn’t become concerned until Ian didn’t seem to talk as early as other children. That concern grew when, at nearly one-and-a-half, he started at the same preschool that his sister attended and didn’t do very well. "He had trouble adjusting to the schedules that they had," she recalled. "He wasn’t talking. When he would get upset, he’d wake up the other kids. He was also bigger than all the other kids — so big he could fall over and crush any of them. The school soon said it wasn’t working out. I was distraught — how many kids get kicked out of school before age two?"
The school suggested that Ian be tested because he "seemed a little off." Now worried, Leta took Ian to a series of professionals. It was a psychologist at Children’s Hospital in San Diego who gave Ian a diagnosis of pervasive developmental disorder-not otherwise specified (PDD-NOS) -- one of the autism spectrum disorders. "That was when we had the first real diagnosis," Leta said, haltingly. "It was a four-hour test, and halfway through I remember asking the psychologist: ‘You don’t think he has autism, do you?’ and she said, ‘As a matter of fact, I think he does.’ It was like the rug being pulled out from under me because when I thought of autism, I thought of Dustin Hoffman in Rainman. Would my little boy ever have a normal life?"
Like so many moms, even in the midst of her shock and grief, Leta immediately began to educate herself and get an intervention program in place. She contacted her Regional Center — California’s state program for individuals with developmental disabilities — and enrolled Ian in an early childhood program. While still holding down her job as an environmental consultant and project chemist, she juggled multiple programs and therapies, including in-home applied behavioral analysis (ABA). Leta found this hardest to cope with because she could hear Ian’s distress when the therapists were demanding a challenging new task. But it paid off. Only a few months later, in February 2003, Leta heard her son’s first word. While on a swing, he exclaimed "Yay!" By July, he was using 35 words. He thrived at a special program with 8 typical children and 4 children with ASD at Children’s Hospital, gaining even more words and blossoming in every way. His progress was so amazing the school district felt he was ready to go back to his old preschool the year before Kindergarten. That, Leta said with regret, was a mistake.
"We started him there and he just went backwards. He needs to know who’s in charge, and in a setting like that when 200 kids can be out on the playground and any adult can be telling your child what to do — other than his teacher — he just didn’t listen." Leta moved her son to a smaller preschool setting that had other children on the spectrum and where they really understood the children’s unique way of being and needs. Ian got right back on track. As he continued to thrive, transitioning to Kindergarten at a charter school where he was able to work above grade level, Leta realized how little the old preschool knew about how to work with children on the spectrum. Still, she is grateful to them because it was thanks to their original recommendation that Ian was tested and diagnosed with an ASD at an early age.
Leta had especially worried about whether Ian would be able to make friends, and whether people would make fun of him because he would spin, flap, and sometimes use his body to mimic a car or truck — objects that he adored. What helped, Leta said, was when a therapist told her and Kim that all of this was Ian’s way of coping, a way of releasing his energy. Redirecting that energy became a major strategy. One way both parents and teachers learned to do this was through art therapy, where Ian would color instead of engaging in less acceptable behaviors. He began to make friends, too, and get invited to play dates and sleepovers.
Luckily, Leta said, Ian is an attractive, affectionate child. This turned out to be a true advantage because teachers and others were drawn to Ian and wanted to help him. Leta was especially grateful for this, considering that, when he was younger, Ian hadn’t been expressive at all. He had what she calls a "deadpan look," and it took a lot of intervention before he began to pick up on social cues — and even charm people. In kindergarten, little girls in his class actually gravitated towards him, calming him down when they sensed he was about to have a meltdown. "They just took him under their wings," Leta marveled. "He really turned that into a mechanism to help him succeed."
Like many children with ASD, Ian has had a string of intense interests: vehicles of all kinds, Angry Birds, Pokemon, Transformers, snakes, tornadoes! Ian gets creative with whatever interests him. "He’ll watch a movie that he really likes, "Leta says, "and record scenes from the movie, and make his own little mini-movies. My husband and I will go, ‘Wow, this kid is going to be some kind of engineer or something.’ He’s really into how things work and putting things together. He’s only 8."
What motivates Leta to travel to distant universities, undergo interviews, get blood drawn, complete online questionnaires, and otherwise contribute to research? In brief, she wants to support all the mothers who are coming along behind her, all the parents who will face the same challenges as they try to help their children with ASD. "Having gone through my journey, I want to help other moms out there. So much of it, you can help. That early intervention, starting at that early age, just makes all the difference." Leta wants others to know about the resources available, and about studies families can do to learn more about their child’s needs while, in their own turn, contributing to our knowledge about autism.
Articles About Findings Made Possible by Simons Simplex Families
- Good News for Late Talkers
- The Simons Simplex Collection: Partnering with Families to Search for the Source of ASD
- Striking Differences in the Social Brain Found in Children with ASD, "Unaffected" Siblings, and Typical Children
- Searching in a "Smaller Haystack" Yields Promising Findings in Autism Genetics
- Friendship, Internalizing Symptoms, and ASD: Researchers Explain Their Findings