The Interactive Autism Network (IAN) Project is the nation's largest online autism research effort. Thousands of participating parents who completed the IAN Parental Depression History Questionnaire have shared their experiences of the challenges involved with raising a child on the autism spectrum. We now present a preliminary report on family stress based on their input. In Part 1, we explore stress associated with child-focused issues, such as challenging behaviors and erratic sleep habits. Part 2 will address additional issues, such as the impact on finances and parents' careers, while Part 3 will examine the effect on marital and other relationships.
|IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks.|
|For many families, the experience of raising a child with an ASD begins with a feeling that something is not quite right.1 Perhaps during infancy, the child seems to be "behind" in development compared with an older sibling, but individual differences could account for that. Perhaps the child doesn't seem to be developing the depth of language skills expected for his or her age, or perhaps he or she doesn't seem motivated to interact socially with other children or even with family members. But individual differences could account for those things, too.
Eventually, however, as the feeling grows stronger, the family may seek a diagnosis to explain the child's emerging, more pronounced autistic behavior: repetitive movements, such as hand flapping or a preoccupation with lining up or ordering objects; poor eye contact; a hypersensitivity or lack of sensitivity to sensory stimuli, such as sound or touch; or a lack of understanding of emotions and how they are expressed.
Whether the diagnosis comes earlier (more likely in the most severe cases of autism) or later (not uncommon in cases of high-functioning autism or in Asperger's syndrome), chances are the family is already under considerable stress. No aspect of family functioning is unaffected, from coping with a child's tantrums to dealing with financial burdens or social isolation. Mothers and fathers participating in IAN Research have reported on many aspects of the stress they experience, with responses ranging from feelings of frustration and disappointment when their child experiences a setback to joy in their child's accomplishments, large or small.
What have families shared?
Please Note: These Findings Are Preliminary
A note about gender
"As a challenge to the family, autism must rank among the most stressful of childhood developmental disabilities," concluded one Australian study.2 An affected child's communication, emotional expression, and antisocial behaviors combine to place a tremendous strain on families.3 The more extreme the behaviors, from self-injury to frequent meltdowns, the tougher the challenge.4
In the Parental Depression History Questionnaire, parents were asked to what extent their child's difficult behaviors had a negative impact on their lives. As with all of IAN's online questionnaires, they also were able to leave comments to help explain their situation to researchers.5 Fully 72% reported that difficult child behaviors had a moderate or great negative impact on their lives. (See Figure 1.)
One mother felt the question hadn't been worded quite right. She said, "I would like to stress -- no pun intended -- that saying that it has a negative impact sounds wrong... I guess stress is negative, but I never looked at my duties as a mom to an autistic child as a negative. I truly love caring for my family, but being tired, overwhelmed, emotionally drained... yeah, it's stressful; I'm just hesitant to pin that all on the autism." Many parents concurred, emphasizing the joy or perspective their child had brought to their lives at the same time they acknowledged the undeniable challenges.
Two frequently mentioned contributors to stress associated with child behavior were meltdowns or aggression. Both required an exhausting hyper-vigilance on the part of the parent, and made interaction with the larger world difficult. Social isolation for the entire family was one consequence of extreme behaviors, as parents stuck close to home and to routines and environments that were comfortable for their affected child in order to avoid outbursts...or people's response to them. "I had been isolated to only playing with him at home," said one mother. "We couldn't even make it to the park to play. No one but family would interact with us."
It was also clear that parent self-esteem and feelings of competency could take a hit due to these ongoing and difficult-to-manage behaviors. One parent, who was also a teacher, said, "It has completely blown my confidence as a teacher. How can I demand certain behavior from my students when my own child can't, won't, or doesn't behave?"
Many parents commented that difficult behaviors had improved greatly over time, which should give hope to those still parenting very young children with ASD. Some said that finding the right program for their child, or starting a new medication, had helped. Others emphasized that it was other people and their lack of understanding, which sometimes created the biggest problems. Declared one parent, "The difficult times, I must say, are when the outside world interferes with my son. Left to his own accord, he is very happy and content. Therein lies the problem; we cannot go off and live on an island."
Parents of children with ASDs often report that their sleep is not as long and is of poorer quality when compared with other parents, including parents of typically developing children or children with other disabilities.6, 7 One study, conducted in Philadelphia, summed up this aspect of raising a child with an ASD: "Over time, the poorer sleep quality and shorter sleep duration experienced by parents of children with ASDs...contribute to or exacerbate the stress related to raising a child with an ASD." 8
Sleep deprivation is no joke for families.
When parents were asked about the consequences of a child's unusual sleep patterns (such as refusal to sleep, waking in the middle of the night, and prolonged bedtime rituals), 48% reported that exhaustion due to such issues had a moderate or great deal of negative impact. (See Figure 2.)
"This is well over 50% of the problem, I think," said one mother. "If you had a cure for the sleep problems it would mean less of these kids being put into foster care, it would cut the divorce rate. I think this is the crucial issue that is not addressed. You can't sleep yourself when you are worried that your child could get up, stack chairs to reach locks, and get out of the house."
From another parent: "This is literally killing my family. All of us have developed health problems as a result of this."
While some families never experienced issues surrounding sleep, others recalled years of debilitating sleep deprivation that took a severe toll.
Many children with ASD need therapies not only for issues associated with their ASD, such as language delay or difficulties navigating the social world, but also for disorders that sometimes co-occur with autism spectrum disorders such as attention deficit hyperactivity disorder (ADHD), depression, or anxiety. Whatever the specific constellation of issues for any one child, a broad range of services is often required. Obtaining and managing multiple treatments, which can include physical therapy, speech and language therapy, occupational therapy, social skills training, medication management, applied behavior analysis (ABA), and other interventions, is associated with financial burden as well as increased stress, strain, and mental health issues for families. 10
Figure 3, below, illustrates that nearly 70% of parents report a moderate or a great deal of negative impact caused by difficulty getting treatments.
"This is absolutely the MOST difficult part of having a child with ASD. I am so tired of fighting," one discouraged parent said. Likewise, a frustrated father wrote, "We are told early intervention is vitally important but we have no support in getting or paying for the services. We are completely on our own to help our child."
The quality and availability of services reported by IAN parents varied widely. Parents in one location might report satisfaction with the "autism-friendly" therapies available at their child's school, while parents in another might express disappointment. One parent said, "The greatest part of this stress is being considered a 'difficult' mother because every issue is a fight with the school."
Parents who turned to private services, or who transferred their children to another school or decided to home school them, also encountered potentially stressful issues, including financial ones. Paying for private services, or giving up a job to stay home and teach a child, often caused money problems. These were exacerbated by struggles with insurance companies which often refuse to pay for autism treatments. "The fact that we have health insurance, but our HMO refuses to pay for many treatments, such as Sensory Integration Therapy, ABA Therapy, and Social Skills Therapy (when offered by a Speech Pathologist - instead of a Psychologist) is incredibly stressful," said one upset mother.
Of course, it is also stressful when a treatment a family has invested time, money, energy, and hope in does not yield hoped for results. Although many parents took heart from positive outcomes they attributed to various therapies, 46% of parents reported a moderate to great deal of negative impact on their lives due to disappointing treatments. (See Figure 4.)
Several parents said they had come to accept that some things work, and some things don't -- when something fails, you try not to be discouraged and move on to the next possibility. Many commented that they learned to rejoice in every small gain, and to accept that the whole process was characterized by fits and starts. "Our son has been on a 4 year recovery journey that was not like a ramp but more like the stock market, with times of plateaus and regressions, usually preceding advancement," is how one parent described it.
A mother mentioned that, although she had learned to be patient and optimistic, it was others in the family who had difficulty dealing with disappointment in therapies -- potentially contributing more stress. "Most of what we have tried has yielded positive results to some degree. I think the 'disappointment' tends to come from family and friends' expectations that your child will be 'cured' when you try something new. It's tiring to constantly explain the incremental progress and why it's all good...."
In ASDs, it is common for children to experience some kind of setback. This is very disheartening for parents working so hard to help their child progress. The setbacks IAN parents described fell into two basic categories: a) classic regression in which a child had acquired a skill (such as language or toileting) and then lost it; and b) more general setbacks involving newly emerging negative behaviors or challenges.
More than 70% of parents told IAN they had experienced moderate or a great deal of negative impact on their lives when their child experienced "a major problem or reversal in progress at school or in some other area of life." (See Figure 5.)
"Grief creeps in whenever a regression takes place," said one mother. "I have seen my son function so close to normal for moments in time and I have seen him function so far from normal at many other moments." Parents spoke about skills lost for no identifiable reason at all, as well as skills lost at the same time as some other stressor: a father walking out, a new sibling being born, a family move, or even a teacher departing for maternity leave.
Many setbacks involved the emergence of a previously unseen behavior or condition: a new stimming behavior; the onset of seizures; an increase in meltdowns or aggression (which might lead to major issues with the school and the need for a new placement); or growing awareness on the child's part of the widening social gap between her and her peers, leading to problems with self-esteem or depression.
"My child has been suspended from school this year due to behavior," reported one mother. "The school has failed to see the need for a resource person who has an understanding in behavior management and social skills, particularly working with Asperger's/high functioning autism. It is hard to watch your child's self esteem drop radically from one school year to the next, and then to have your child ask you: if they were not around, would you care?"
Parents do readjust when setbacks occur, finding additional treatments or modifying placements. Generally, the crisis is survived, and progress continues, although some parents report feeling traumatized by the experience.
When their children are young, parents worry about whether they will be bullied at school or whether they will have any friends. As their children grow older, parents' concerns turn toward prospects for independent living, employment opportunities, potential romantic relationships, and (though some said they try not to think about it too much) how their child -- and his or her siblings -- will fare when the parents can no longer advocate and care for them.
A whopping 89% of IAN parents report a moderate or great deal of negative impact due to worry over their child's future. (See Figure 6.) As one mother put it, "I cannot even put into words the fear that I feel for my child when I think of his future without his father and me."
"This is the question that enters my mind every single day," said one mother. "I have to put it away every day because if I let it, it can put me into depression. I use cognitive therapy to control my thoughts regarding her future. But really, it breaks my heart every moment of my life."
Parents spoke of putting aside money out of fear for their child's future. They also described worries for their other children, the affected child's siblings. "I am worried about what would happen to her if I was no longer around," one parent said. "I don't want her brother to have to be responsible for her for the rest of his life, but, in all probability, he will."
These fears are intense even for parents of higher functioning individuals. One father fretted: "We are still in need of ways to help him to be more independent. He might go to college but he'll still need someone to make him change his underwear, eat at meal time, and disengage from what he is doing."
More parents felt stressed about their child's future than about any other issue examined. (See Figure 7.)
Despite their fears, many parents declare they are holding on to their sense of optimism and hope for their children. As one parent said, "What parent doesn't worry? But she is such a joy and incredible in her own way that I know she will find her place." Echoed another, "I will forever foster more hope for my son than grief over him. He is a brilliant child and a gift to me even on his very worst day."
In Part 1 of this article we've addressed IAN findings related to child-centered issues contributing to family stress; in Parts 2 and 3 we will discuss additional stressors that can be associated with raising a child on the autism spectrum, such as the impact of ASD on other family members' educational and career goals, relationships within the immediate and extended family, and financial hardships. Stay tuned!