Dr. Joshua Sparrow, a child psychiatrist with the Brazelton Touchpoints Center at Children’s Hospital in Boston, recently responded to reader questions about children and the stress of the holiday season. Several parents wrote in about the special challenges posed by autism. Ange, for example, whose 3-year-old son has an autism spectrum disorder, wrote:He goes with the flow most of the times but has so much trouble getting what is going on around him. He still doesn’t get the meaning of presents or the concept of Santa. It’s really hard to see him looking around clueless while other kids are having a blast. He stands out, and sooner or later his peers will catch on to that and potentially marginalize him. All we can do is keep explaining to him what is happening. It’s like giving my kid subtitles in a life made in a foreign language.
And JD, whose 5-year-old son has autism, responded to Ange:
Nothing about Christmas and its associated traditions made any sense to him until this year. He simply did not “get” it when he was 3 or 4. Things have improved this year over last, but I have had to let go of a lot of expectations in regard to this holiday. That has been liberating on some level, but I gotta say, it was depressing before it was liberating.
Patricia wrote in about how children with autism “can react with extreme distress to light displays, to a single light being out in a light display, to the appearance of gifts beneath a tree, to the ubiquitous holiday displays and music in stores and malls.” And Paola described the difficulties faced by her daughter newly diagnosed with autism spectrum disorder and sensory processing disorder:
She is having a hard time with “transitions,” especially if we go to a public place (loud music, bright lights, etc.). It is so sad to see how people minimize this, especially when one mentions that your kid has sensory processing disorder — they really have no idea how this impacts your family dynamic.
Below, Dr. Sparrow responds to these and other concerns posed by parents who are raising a young child with autism and facing the stress of the holiday season.
Autism and the Holidays
Several readers wrote about their children with autism spectrum disorders and their children’s difficulties both with handling the sensory overload that comes with this time of year and with understanding the deeper meanings of the holidays. The challenges of children with autism spectrum disorders and the behaviors that result can be baffling for those who have had little experience with them. It can likewise be baffling for those who are familiar with autism, including parents and other family members, as well as the children themselves.
Most of these behaviors arise from differences in the ways that these children experience, understand and interact with the world. Some children with autism spectrum disorders do not speak at all, while others develop the ability to speak later than typically developing children. Most find it hard to understand the social and emotional meanings of language and nonverbal behavior, including words about emotions, or facial expressions and tones of voice that convey emotions. They also have a harder time understanding their own feelings, and those of others, than children without autism. However, these differences in understanding and expressing their feelings often lead others to underestimate their potential for empathy, compassion and other emotions. Still, abstract ideas and symbols — like Christmas trees, a baby in a manger and everlasting lights — are also often difficult for them to comprehend.
Many children with autism spectrum disorders are easily overwhelmed by sights, sounds and touch, and even by smells and tastes. To protect themselves, these children shut out sensory information by withdrawing or absorbing themselves in repetitive behaviors or idiosyncratic interests, which can interfere with learning about their surroundings and connecting with the people who care most about them, including their parents. It can be excruciating for parents and motivates many of them to move mountains to help their children learn to engage in relationships with them and others.
Adjusting to changes in routine or to new events and experiences is often a much bigger challenge for children with autism spectrum disorders, and it saps their energy. Lights and music and special decorations that may be magical for other children may lead children with autism spectrum disorders to panic, run out of the room or shriek and fall on the floor, flailing. As with other transitions, limiting changes in routine and new sensations, and introducing them very gradually, whenever possible, can help children begin to open up to them.
These children’s behavior is predictably unpredictable during transitions. Over time, parents learn — better than anybody else — what to expect. They learn how to prevent, shorten or cut back the frequency of the blow-ups by preparing their children in advance, even rehearsing small bits of the new activities. Providing protection against too much stimulation and being sure that their children have access to familiar toys and activities can also often help them to relax.
Still, parents are bound to be on guard at times of heightened excitement. They know they may need to drop everything to try to help their children pull themselves together again. Siblings are often on guard, too, and may be frightened. Often, they feel responsible and wish that they could make everything all better. Or they may feel guilty about their simple wish to have a “normal” family, “just like everybody else.” Year in and year out, this can take a toll on holiday spirit for everybody.
Parents may feel all alone and without support as they raise a child with autism. These feelings are bound to be intensified at holiday times, when the challenges are often even greater, and their children’s differences seem to stand out more. As one reader noted, having friends, relatives and neighbors who don’t judge, really care and are ready to help can make a big difference. Yet it may be hard for those who have not had direct contact with children with autism spectrum disorders to imagine what it’s like — for parents and siblings, or the child — when communication, social interaction and sensory processing are disrupted. These are such constant and essential functions that most of us usually take them for granted.
Parents of children with autism may not always understand what their behaviors are trying to say, but they usually know better than anybody else. They also know what they wish they could help them to understand. Even if their children’s lack of understanding may sometimes protect them from knowing what they’re missing, it doesn’t protect their parents from longing for them to share in the moments of warmth and joy that being together at the holiday season can bring. Yet these children have their own ways of showing that they do love their parents and siblings — even though they may not be able to say so — in their own ways. Developmental, individualized and relationship-based treatments are being used to help these children expand and strengthen these connections.
With the recognition that autism spectrum disorders are brain-based, science is making important strides, although there is still a long way to go. This progress is being made in part thanks to individuals with autism and their families and organizations like Autism Speaks that raise awareness and money for research. It is also, unfortunately, a result of the sharp increase in cases of autism diagnosed in children in recent years. In 2009, the Centers for Disease Control and Prevention estimated that 1 in 110 children born in the United States are diagnosed with an autism spectrum disorder. Similar increases have also been detected in European and Scandinavian countries and are not attributed to increased awareness and diagnosis alone.
The causes of autism spectrum disorders, and of their increased incidence, are for the most part still unknown. They are thought to be multifold — genetic, environmental and epigenetic. Epigenetics is a relatively new science that studies the effects of environmental influences on gene expression, even within a single generation. Pregnancy and the first years of life are times when genes are particularly susceptible to the environment.
Many scientists believe that a dormant genetic predisposition to autism may be activated by a number of different environmental influences. Infectious agents, nutritional deficiencies and chemical toxins have all been invoked as possible contributors, though no specific environmental trigger has been definitively established. This lack of evidence does not necessarily mean that there aren’t any specific triggers, given the challenges of conducting this kind of research, the relatively limited funding for it and the tens of thousands of synthetic chemicals to which people are frequently exposed but whose safety for humans has not been studied.
Because the human brain develops more rapidly during the first three years of life than ever again, and because infants and very young children are learning so much about communication and social interaction during these years, early identification and treatment of autism spectrum disorders can make a big difference. One promising treatment for such children is Floortime, a developmental, individualized and relational approach.
After a careful assessment of the child’s unique profile, therapists and parents using the Floortime approach work together to help the child learn to handle sensory stimulation while gradually interacting in more complex and rewarding ways. The goal is to help these children engage in meaningful relationships, expanding their capacity for communication, understanding and complex, abstract thought. One of the keys is to find the child’s motivation, and to use it as fuel for this work. Another is to make the work rewarding by making it fun and pleasurable for child, parent and therapist. But it is hard and time-consuming work, and families of children with autism spectrum disorders deserve all the support we can possibly give them. Experience has shown that children with autism who are given the support they need are able to expand their abilities to relate, to learn and to communicate, especially with their loved ones.
For more information and resources on autism spectrum disorders, see the Autism Speaks Web site.
For more on autism spectrum disorders and Floortime, see the International Council on Learning and Developmental Disorders Web site.
Among the many helpful and hopeful books on autism spectrum disorders are those by the late child psychiatrist Stanley Greenspan and the psychologist Serena Weider, including “Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate and Think,” and a new one to be published in April by the pediatrician Ricki Robinson, called “Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child.”
source: well.blogs.nytimes.com
