The Interactive Autism Network (IAN) Project is the nation's largest online autism research effort, building a bridge between researchers attempting to solve the complex puzzle of autism spectrum disorders (ASD) and the individuals and families whose day-to-day lives are affected. In our recent report, “Family Stress – Part 1,” we described the experiences of thousands of parents who had completed the IAN Parental Depression History Questionnaire, sharing the impact on their lives of raising a child on the autism spectrum. In that report, we focused on child-centered issues, such as challenging behaviors and erratic sleep habits. In Part 3, we will address the impact on the couple relationship, as well as on friendships and relationships with the extended family.
In this current report, Part 2, we turn our attention to two other factors that can contribute to the stress levels in families of children with ASD: the impact on parents' careers and/or educational goals and on family finances.
|IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks.|
|Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASD) from the United States who choose to participate. They may not generalize to the larger population of parents of children with ASD. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
For many people, both male and female, a job or career and the education leading to it are fairly central aspects of identity. Even if a job is not the end-all of someone's life – if someone has “just a job” as opposed to a career -- it can be a financially necessary and socially engaging part of that life. Losing the ability to work can mean losing not only money, but also an identity, and a place to be and interact.
There is no question that having a child with major needs is likely to affect work life, or the schooling leading up to it. We asked IAN parents: “What impact, if any, has raising a child with an ASD had on your own career or continuing education?”
What did parents tell us?
The answer was somewhat different for mothers and fathers. More fathers than mothers felt there had been no impact on their career or education: 44% vs. 28%. Many fathers did report a negative impact (46%), but even more mothers did so (59%) (See Figure 1). This may be because women are more likely than men to stay home with children if family circumstances demand it.
Studies have shown that gender roles tend to become more traditional after the transition to parenthood,1 2 with mothers taking on the lion's share of domestic labor whether they work outside the home or not.3 If forced to assign the “homemaker” and “breadwinner” roles to separate parents rather than sharing them, it might be assumed that many families with children would assign the mother the “homemaker” role. Second, disparity in pay still exists in the workplace; 4 5 if a family is going to have only one wage earner they are likely to assign the person likeliest to earn the most to that role. There are, of course, many exceptions, but the trend appears to be what one might expect: more mothers with a child on the autism spectrum report experiencing a negative impact on their careers than fathers.
|Other studies also have reported an especially negative impact on mothers' careers. Sociologist David Gray interviewed 32 Australian families with a child on the autism spectrum. 6 Many of the mothers he spoke with had planned to return to work at some point after having a child, but found they simply could not because of their child's extensive needs. Even if they were able to keep their jobs or careers, most had to work part time, seek flexible hours, or otherwise give up a more fulfilling, financially rewarding, or powerful position. Those who were trying to work found that having a child with autism often meant missing work, performing below their normal standards, and living with the substantial strain involved with trying to juggle not just a job and a child, but a job and a child on the autism spectrum.
IAN parents echoed many of the feelings and experiences of the Australian parents who, although half a world away, faced similar circumstances.
With so much of their time and energy needed to care for a child with ASD and manage his or her treatments, some parents who were still employed reported struggling to keep their jobs. Said one IAN mother: “I am on the verge of losing my job…. No one can understand what it's like…. It's like I work at a fire department. I never know when I will get a call, or when I'll have to leave.”
The more time required at work and the more restrictive the workplace, the more difficult the situation. “I am currently doing my best to survive because it is so difficult to work for corporate America with a special needs child,” said one working mom. “Many companies will tell you they understand and support you, and you may get time off, but you pay in other ways, such as lack of raises and promotions.”
Sometimes the strain had predictable consequences. “I received a negative performance review, did not receive a raise, and finally left a job. The cause was being ‘distracted' (my boss's words) by my son's special needs,” stated one now unemployed mother.
Child behaviors were often a major problem, and distressing phone calls from the school were a significant impediment to holding down a full-time position. As one mother put it, “I didn't feel I could take a job when I was receiving phone calls 3-5 times a week regarding his behavior, frequently with the request for me to come to school and take him home. As he got older, it seemed that the minute I thought I could go back to work, he would get suspended or there would be some other indication that things weren't settled enough for me to be away from home during the school day.”
Child care was mentioned as an issue by many, no matter their child's age. In some cases, a child could not tolerate more time away from home after an already demanding school day. In others, there was no adequate day or after-school care for a child with special needs. “I gave up work to do my son's therapies,” reported one mother. “I have tried to go back the past 3 years but none of the childcare providers will take him even though state law says they have to. I landed a job paying over $100,000 per year, and I had to give up after 3 weeks due to childcare issues.”
Some parents remarked that even older children with ASD were not able to care for themselves, extending the need for daycare or babysitting into the teen years. Research has shown this to be an issue for families of adolescents with all types of developmental disabilities.7 As one IAN parent put it, “My fourteen year old son has the mentality of a second grader. He cannot use the phone in case of an emergency, cannot use the microwave or get things to eat.... I would have to hire a babysitter for him and would not make enough money to do so, although I really need to work.”
Other research has confirmed the childcare dilemma and its consequences. In a study comparing families of children with autism and families of unaffected children, parents of young children with autism were nearly seven times more likely to leave a job because of child care issues than parents of unaffected children.8 University of Rochester researchers reported in another study 9 that 39% of parents of children with ASD said they had quit a job, not accepted a job, or greatly changed a job because of child care issues related to having a child with ASD – more than four times the 9% reported by families raising typically developing children.
With all the barriers to success, a great number of parents had given up a career, or taken any job that would offer flexibility, even if it came with fewer-than-desired hours, lower pay, fewer benefits, or less job satisfaction.
For many, staying home was a necessity, whether accepted or resented. For others, staying home was more a choice – the needs at home just seemed to take more precedence. “I'm not sorry I quit work and I wish I could have done it sooner,” said one mother. “If I could, I wouldn't go back to work. It feels like tending a garden when the house is on fire.” Said another, “My job is taking care of my daughter. There is no way I could go to a job or school. If I do anything like that I have to do it from home from my computer. I don't mind. My job for the rest of my life is to take care of her and that is fine with me. She is worth it!”
Like mothers, many fathers reported making major career adjustments: giving up high-power careers, staying home part time, or juggling schedules so one parent would always be “on tap.” Said one father, “All career choices are based on my ability to spend time with my son, limit travel, help my wife who stays home with the kids, and at the same time somehow maximize my income to pay for his services.” Other fathers described the pressure they felt as wives in former two-income households began to stay home…and the entire responsibility for breadwinning and providing health insurance fell squarely on the father's shoulders.
Many parents said they were glad to have made the sacrifices they had, and that they were worth it. Still, losses of many kinds had been undeniably real. “I cannot work and have no options,” said one mother of a child with autism and multiple health problems. “Prior to his birth I was a very successful and independent woman who had started from the ground up and stayed in the same field for many years.” Said another succinctly, “My career and any thoughts of graduate school are over.”
On a more encouraging note, 9% of fathers and 13% of mothers reported a positive impact on their careers or education. This varied somewhat by the parent's own level of education, with more than 18% of those with advanced degrees, and about 11% of those with a high school diploma or college degree, reporting a positive impact. Many had found new careers in the area of autism advocacy, social work, applied behavior analysis, special education, or related fields.
We also asked parents: “What impact, if any, has raising a child with an ASD had on your financial situation?” On this, mothers and fathers agreed. Nearly 80% said it was negative (See Figure 2).
|Considering that so many parents report cutting back employment when they have a child on the spectrum, this is not surprising. Employment issues can translate very quickly into financial ones. Add to this the costs of evaluations, treatments, and therapies (often not covered by health insurance), and possibly legal expenses, and it is no wonder families feel a pinch. Indeed, two researchers who set out to measure this impact in concrete terms concluded that the average annual financial loss associated with having a child on the autism spectrum was 14% of reported income.10 According to IAN data, families of a child on the autism spectrum are spending thousands per year just on interventions (See Figure 3).
|Reflecting this, a negative financial impact was reported by 75% of parents of children with Asperger's, 78% of parents of children with PDD-NOS, and 80% of parents of children with autism. In brief, no matter a child's age or diagnosis, financial consequences were substantial.
Some parents answering the Parental Depression History Questionnaire reported having sufficient resources. “We are fortunate to have the means to pay for many therapies and for private school,” said one grateful mother. “I feel very bad for families who don't have choices.”
Most families did face difficult choices, as limited means met unrelenting and wide-ranging needs. Desperation was a common theme – the ideal program, school, or therapy out of reach, or within reach only if the family spent to their limits and beyond.
Expenses mentioned by IAN families ran the gamut. These included the expense of treatments like applied behavior analysis (ABA), the biomedical “Defeat Autism Now (DAN)” protocol, special diets, and any speech therapy, social skills training, or other treatment not fully provided by the school. Just driving long distances to multiple treatments became burdensome, especially when the cost of gas was high. For families who had children who were not yet toilet trained, the cost of diapers or toilet-training pants for years longer than expected added to their troubles. If a child could not tolerate routine dental procedures, specialized dental care involving general anesthesia (and much greater cost) was required. Any kind of summer care -- like summer camp -- had to be specialized, and was therefore much more expensive. Many children needed psychotherapy or medications -- whether for ASD or co-occurring conditions like attention-deficit/hyperactivity disorder or obsessive-compulsive disorder.
What insurance would cover, or not, had a huge impact, as did the increasing cost of insurance plans themselves: higher premiums and higher co-pays. The effects were devastating for many families; many were spending “every spare dime” they had. Just a few of their comments:
For those with very few resources, the situation was dire. “There is so little help for single parents of ASD children,” said one struggling mother. “There is a combination of food assistance, child support, if I'm lucky. I owe the state money because I had to take cash assistance prior to a diagnosis to get SSI…. It is truly exhausting.”
Several parents mentioned the cost of having a child who was destructive to property. Sometimes the child's creativity delighted the parents, although the costs were still an issue: “I'm constantly replacing his things he likes to take apart,” said one parent. “He likes to take stuff apart and make new stuff on his own. It's hard on me financially, but I deal with it because he creates some very wonderful things!”
Sometimes the destructiveness had no positive side. One mother stated, “I have had to replace furniture, countless mattresses, so many clothes from him soiling himself. Also I have lost security deposits due to the holes he puts in the walls, and I can barely afford my rent because I need 3 bedrooms. The doctor says he and his sister can't room together because he could hurt her. I pay 2/3 of my monthly income on just rent. Utilities, even food, have to come second. I feel as if I will never see the light at the end of the tunnel….”
Even though immediate needs were pressing, families also worried about the future: funds for their affected child's needs as an adult, whatever they might be, their unaffected children's college or wedding, and their own retirement. One father said, “There's so much extra to pay for NOW with therapies, adaptive equipment, therapeutic toys, etc., but there's also the future to worry about and how we're going to leave him money in a trust to be able to live adequately.” As reported in Part 1 of our family-stress report, worry about a child's future was an enormous issue for families. That worry surely intersects with financial burdens and anxieties.
Grandparents were mentioned by some parents as their salvation. “My daughter's school costs nearly a thousand dollars a month,” said one mother. “If it weren't for my mother's help we COULD NOT have sent her there.”
(In fact, IAN is in the process of preparing a Grandparent of a Child with an Autism Spectrum Disorder survey for launch on IAN Community in the summer of 2009. Understanding the role and emotional and financial contributions of grandparents is an important part of the picture of the impact of autism spectrum disorders on families in the United States.)
In sum, financial concerns were a major stressor for the vast majority of families who responded to our questionnaire. Some parents struggled, making enormous sacrifices to provide what they could not truly afford. Others hit the wall…and could not provide what they wished. Many, having few or no resources, fought as hard as they could for what the school or public programs could provide.
Capturing the desperation faced by so many, one father said: “We are financially crumbling. We put most of our money towards supporting our son's therapies and biomedical interventions. His behaviors change and his health suffers when we deviate, so we simply do not. Still, we will cap out soon on our home equity line of credit and then we will run up the rest of the credit cards to their limits in pursuit of helping him. The creditors will come after us, and we will press on -- we will never stop helping him…. I am his voice. He is my heart.”
There are many sacrifices involved when a family is raising a child on the autism spectrum. There are also triumphs and joys…and an astounding amount of family resilience in the face of great challenges. We have seen in this report the strains that may come from impacts on career, education, or finances. In our next report, Family Stress – Part 3, we will share parents' input on the effects, good and bad, of having a child with ASD on marital relationships, relationships with extended family, and friendships. We also will look at how many families, especially with the right support, can transform themselves as they come to grips with being “an ASD family,” overcoming challenges and transcending the judgments of others to thrive and to celebrate their child with ASD. Stay tuned!
To Share Your Thoughts About These Findings…
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