AUTISM’S IMPACT ON THE FAMILY
When one or more members of a family have autism, the effect of autism on individual members of the family, relationships within the family, and how the family interacts with society is complex and extensive. Research has demonstrated “immense” impacts on the family of an autistic child, including increased levels of parenting stress, higher levels of health concerns, decreased family quality of life, and increase in problems within sibling and marital relationships The impact of autism within a family is often felt long before any formal diagnosis is received. Parent and Family Impact.
“Autism, as a pervasive developmental disability, leaves few, if any, “conflict-free spheres of functioning” for the child and, therefore, for the family. Every aspect of family life may be affected including sleep, meals, toileting, play, travel, education, and work.” Routine, structure, and scheduling are important to reducing anxiety and meltdowns for autistic children, yet the typical schedule for an autistic child is hectic and competing demands of doctor appointments, therapies, and special education meetings put a strain on parents. Understanding Autism.
“In the case of understanding the experience of raising a child (or children) with [autism], the results of research tell a complex story. By and large, parents of children with [autism] tend to experience significant stress related to parenting. This has been shown in many studies over the past thirty years with a variety of samples, among various age groups, a range of socioeconomic statuses, and even across different countries. In fact, research has also indicated that parents of children with [autism] typically exhibit more stress than parents of children with other disabilities. The potential reasons for experiencing this stress tend to vary. Most studies suggest that parenting a child with [autism] is often significantly stressful regardless of where your child falls on the autism spectrum. Some studies do suggest that more challenging behaviors can become particularly stressful for parents.” Diagnosis not a Prognosis of Divorce.
Researchers typically describe parenting stress as “strain, pressure, and tension revolving specifically around the task of parenting.” Parents of autistic children experience more parenting stress than both parents of children with other disabilities, both developmental and medical, and parents of neurotypical children. Several factors contribute to this high level of parental stress, including “the child’s cognitive impairment, externalizing behavior problems and internalized distress, disturbed mood or irritability, functional dependence, hyperactivity, noncompliance, lack of self-care abilities and low adaptive functioning, language deficits, learning disability, imposed limits on family opportunities, need for care across the life-span, inappropriate eating, toileting, and sexual expression, broad social difficulties, and high likelihood of remaining in the home.” Parent and Family Impact.
Parents often battle with the diagnosis of autism, an internal struggle made more difficult by the tendency of most autistic children to have alternating good days and bad days. Bad days may cause some parents to feel ashamed of their child’s autism, which, in turn, causes them to feel ashamed of being ashamed. Parents of autistic children often feel isolated from other parents in their community. This “[i]solation is heightened by the unpredictable behavior of a child with autism, which can make even the most extroverted parents feel anxious about attending social events, which can involve sensory overload and unpredictability, increasing the chances of a child’s meltdown.” Understanding Autism.
Further, the ever increasing and rapidly changing landscape of information about autism leaves families “navigating a complex and ever-changing course, all the while knowing that delays in accessing services could lead to poorer treatment outcomes.” Negative effects on families, correlated with raising and supporting a child with autism, have been observed regardless of the time of diagnosis or severity of symptoms. Parent and Family Impact.
While both mothers and fathers were found to experience increased stress, mothers typically experienced higher stress than did fathers. Parenting an autistic child also appears to contribute to greater levels of fatigue, lessened parental well-being, both physically and mentally, and lower reported quality of life as compared to parenting neurotypical children or children with other types of disabilities. Further, these health effects were seen to a lesser extent with fathers than mothers. Parent and Family Impact.
However, despite the communication difficulties often presented by autism, parents of autistic children report higher levels of closeness and similar levels of emotional closeness with their autistic child than do parents of children generally in the U.S. population. Behavior problems were found to contribute to decreased closeness between parent and child for all parents. Attachment between parent and child was negatively impacted by the severity of the child’s autism symptoms. This negative effect on attachment “may be more harmful for parents than [their child’s] cognitive or behavioral limitations.” Parent and Family Impact.
The emotional impact of parenting a child with autism is compounded by the numerous practical demands placed on families of autistic children by therapies, interventions, financial burdens, medical care, and reduced work opportunities. Further, estimates suggest that the cost of raising an autistic child is three to five million dollars higher than the cost of raising a neurotypical child. This cost is significantly increased where the child also suffers from a “severe cognitive impairment.” Parent and Family Impact.
Many families having one autistic child will have multiple autistic family members, both diagnosed and undiagnosed, spanning over several generations. Research shows that siblings of autistic children are more likely to suffer from other forms of neurologically and genetically based developmental disorders. Autism in Children and Parents. Siblings of autistic children are also at greater risk of behavioral and emotional problems. The parenting demands imposed by their autistic sibling can cause some siblings to feel ignored, while other siblings may attempt to compensate for their autistic sibling by attempting to excel at everything. Understanding Autism. Despite difficulties imposed on the relationship by autism, siblings of autistic children generally report positive relationships between themselves and their autistic sibling, though the closeness of those relationships tends to decline as they grow older. Siblings additionally tend to view positively the opportunity to assist their autistic sibling with the difficulties they face, such as understanding social situations. Parent and Family Impact.
Though more studies are necessary in the area of marital satisfaction, research tends to suggest that parent and family well-being has a direct impact on the well-being of an autistic child. Parents of autistic children often face “significant challenges in their marital relationships” and tend to experience lower marital satisfaction than other parents. Families of autistic children have also been found to have lower quality of life in general than did families of healthy children or children with other developmental disorders. Diagnosis not a Prognosis of Divorce. Mothers whose autistic children “had the most intense behavior problems reported lower levels of spousal support, respect for their partners, and commitment to their marriages.” Parenting Children with Autism. Autistic families report “lower family functioning” and “lower marital happiness” than parents of neurotypical children. Understanding Autism.
“Parents of a child with autism are nearly twice as likely to divorce as parents without a child with autism. Further, the risk of divorce for parents without a child with autism decreased as the child reached late childhood and early adulthood, while the risk of divorce for parents with a child with autism remained high through adolescence and early adulthood. On the other hand, raising a child with autism can unify a family. Research has indicated that a considerable number of families with children with autism “display factors of resilience – reporting that they have become stronger as a result of disability in the family.” Understanding Autism.
In addition to any relationship difficulties otherwise present in the marital relationship, parenting stress, child behavior problems, and general conflict contribute to the increased divorce rate in parents of autistic children. Research indicates that conflict within the family negatively impacts both the symptoms experienced by the autistic child and the marital satisfaction of parents. Parent and Family Impact. The risk of divorce in families with autistic children is further increased if the parents married younger, are less educated, had children early in the marriage or where families had multiple autistic children or the autistic child was born after one or more neurotypical sibling. This heightened risk of divorce extended for a prolonged period as compared to married couples in general, extending into adolescence and young adulthood. Relative Risk and Timing of Divorce.
AUTISM’S IMPACT IN FAMILY COURTS
“All divorce professionals, including family court judges, lawyers, child advocates, mediators, custody and access assessors, parent coaches, and parenting coordinators need information about [autism] and how [it affects] family functioning both pre and post separation. Autism is widespread in the child population, and parents are more likely than the general population to have undiagnosed higher level autistic spectrum conditions such as [Asperger’s Syndrome].” Autism in Children and Parents.
Some case law addressing autism in a family law context exists, though published cases are few and span several different areas, including termination of parental rights, juvenile delinquency, child support, custody, and child protection matters. Judicial Spectrum Primer. “With the increasing rates of both autism and divorce, judges are constantly facing new cases where families of autistic children are breaking apart. The challenge for family courts is to treat both parents fairly and equitably while safeguarding the needs and best interests of the autistic child.” Autism and Divorce. Due to the genetics involved in autism, there is an increased likelihood that one or both of an autistic child’s parents may also be autistic, whether they have been diagnosed as such or not. Autism in Children and Parents.
When the parents of an autistic child divorce, autism in the child and one or more of the parents involved can significantly impact many of the decisions made concerning separation, divorce, custody, and child support. A parent’s responsibility to support an autistic child may extend beyond the age of 18. Courts considering visitation involving an autistic child often focus on the child’s need for consistency, whereas in the context of child protection, courts often focus on parental capacity and the impact of that capacity on the parent’s ability to take advantage of available services for their child. Courts determining issues of juvenile delinquency involving autistic children consider the “threshold issue of whether the juvenile has the capacity to participate in the hearing.” When considering whether to terminate the parental rights of an autistic child’s parent, “dual issues of parental capacity and need for routine” as core components of the determination of what is in the best interests of the autistic child. Judicial Spectrum Primer.. In determining whether alimony should be granted in a divorce, courts often must consider that after separation, one parent will need to leave their employment to care for the child. “Such an absence from the job market, and the necessary interruption of a career or educational opportunity may be an important factor for the court to consider on the issue of alimony.” Autism and Divorce.
The largest impact is seen in the areas of custody and parenting plans. Parenting plans typically consider such things as which parent has historically been the primary caregiver, any impediments of a parent or parents to parenting, the prior agreements of parents, domestic violence, and the child’s age, attachments, needs and wants. If parents of an autistic child disagree as to the question of what is in their child’s best interest, courts will increasingly need to grapple with the issue of “what constitutes appropriate care and decision-making for a child who has [autism].” Further, attorneys for these families will need to be familiar with “safety issues, therapies, medical terminology, educational issues, and IEPs.” A Legal Review of Autism.
The services available to an autistic child with one parent versus the other has been found to be an important factor in determining custody in some cases. In one such case, the court stressed the importance of the “steps taken by one parent to improve the quality of his son’s life as an individual with Asperger’s Syndrome was the most important issue with respect to the child’s best interest.” A Legal Review of Autism Other courts have discussed the importance of parents to be willing and able to learn more about autism and apply the knowledge they acquire to improve their child’s quality of life. Two key factors which predominate in all custody cases concerning a child with autism are the capacity of the parents to care for the child’s special needs and “the child’s need for consistency and routine.” Judicial Spectrum Primer.
Parenting plans and custody arrangements should be based on the autistic child’s developmental age, rather than their chronological age, because the developmental age of autistic children is typically lower than their chronological age. The developmental age of an autistic child is an important consideration because “[c]hildren with autism tend to be vulnerable and naive because they are, by definition, poor at reading social cues, reading other people’s states of mind, exercising judgment, and interpreting body language. They may not learn readily from experience. They may be easily distracted or victimized. Their sensory defensiveness and extreme negative reactions to stimuli add yet another layer of problems. As a result, it may be negligent to make assumptions about an autistic child’s capabilities or competence based on age alone.” Autism in Children and Parents.
Determination of which parent should be granted primary custody of an autistic child requires further exploration than simply ascertaining which parent was the primary caregiver in the past. Additional factors which should be considered include “the quality of time involved in caregiving, parental mental health status, nature of the physical residence, and determination of parental financial means.” Autistic children may also have a need to maintain sameness within their environment, which can make it necessary to allow one parent to maintain the primary home. This need for consistency within the environment of an autistic child may also mean that the child will “have few or no overnights at the other parent’s home” if it is determined that the child is not “emotionally capable of changing residences.” Autism in Children and Parents.
Leniency may also be necessary regarding when one parent drops off the autistic child with the other parent. Autistic children will often need additional time to adjust to transitions and alterations in their routine. “Time is a key factor with these children. If they feel rushed, some autistic children may actually slow down. In autism, the sense of time may be distorted.” Extensive cooperation between parents may be required if an autistic child has a very strong need for consistency and routine. Autism in Children and Parents.
Parenting plans for these families may also involve periods of time for neurotypical siblings to have some time away from their autistic sibling. These periods of time can enable neurotypical siblings to gain additional quality time with parents and is often viewed by siblings as a positive outcome of their parents’ divorce. Autism in Children and Parents.
While shared custody, with a preference for equal time with each parent, is typically considered a fair arrangement, “such an arrangement may not necessarily be in the best interest of a particular child, especially an autistic child. The back-and-forth nature of shared 50/50 residential custody may work against the need of an autistic child to have a predictable and consistent schedule.” Autism and Divorce.
Other concerns regarding autistic children which should be addressed when determining custody and a proper parenting plan to meet the child’s needs, including, but not limited to:
The parenting schedule established for an autistic child should “give due consideration to the child’s therapy schedule and need for continued intervention.” Consistency and education should be required of both parents. Decision-making should be structured so that the process is not likely to be obstructed regarding therapies, modification of programs, and other interventions. Autism and Divorce.
“There is no room for fighting, posturing, or promoting of hidden agendas by parents who still have unfinished business with each other after the divorce is over. The autistic child’s best interests and development can be seriously compromised by parents who constantly argue and battle with each other to the point where the decision making process is stalemated and crippled.” Autism and Divorce.
Though some autistic people have learning disabilities which coexist with their autism, and make the condition more apparent to the untrained observer, many individuals with Asperger’s syndrome are “highly intellectual, analytical, and articulate in certain areas and do not “appear” autistic to the untrained.” In determination of issues involving autistic children and autistic parents, courts should be aware that neurotypical “spouses and parents of individuals with autism often acquire adaptive behavior that can be seriously misinterpreted by evaluators.” Autism in Children and Parents.
When one or both parents have an undiagnosed case of high-functioning autism or Asperger’s syndrome, this can present particular challenges to family courts. Often, the undiagnosed autistic parent will exhibit “extreme rigidity, egocentricity, and inability to participate in give-and-take.” High conflict may result from the parent’s undiagnosed condition, and “may persist indefinitely if the parent’s disability is not recognized and suitably addressed by mental health professionals.” Autism in Children and Parents.
Even if diagnosed, individuals with these disorders are often able to mask their condition. Parents who have one of these forms of autism may be highly intelligent but also have “severe impairment[s] in their judgment and common sense.” They may fail to put the needs of their child ahead of their own or to even recognize their child’s needs at times. “For example, certain features of [high-functioning autism and Asperger’s syndrome], specifically the egocentrism and deficiency in compassion, empathy, and reciprocity apparent in this disorder, raise the question of inherent deficiencies in the parenting skills of such individuals. These characteristics are also known to introduce difficulties into spousal relationships and may be factors that contribute to divorce.” Autism in Children and Parents.
Autistic individuals often exhibit an “obsessive need to control their environment, especially caregivers or providers on whom they depend” and may attempt to do so through manipulation. When a divorcing spouse is also autistic, this need for control over the former spouse may continue after separation and throughout post-divorce custody arrangements. Many cases of stalking have been observed in these situations. Further, “[t]he obsessed parent may also seek frequent access and shared custody through the courts, using transitions and negotiation to re-engage control over the other parent. If the other parent resists such manipulation, high conflict often results.” Safety concerns of a neurotypical parent based on the other parent’s autism may also cause conflict. Insensitivity or altered sensitivity to pain and illness often seen in autistic individuals can result in situations where “pain and illness may be neither reported nor recognized because the neurosensory disturbances of autism often block the recognition of pain or illness in the self or in others.” Autism in Children and Parents.
“When one parent is committed to defend the child’s best interest and the other parent is committed to his/her own best interest, high conflict is likely to occur. It may be difficult for the professional to recognize which parent is accurately advocating for the best interest of the child, if the parent with [autism] has the intellectual and verbal skills to portray his/her own preferences as if they were the child’s.” Autism in Children and Parents.
Over the month of April, we will be blogging about several areas of the law and how the law affects, and is affected by, those with autism. We invite you to visit our website, like us on Facebook, follow us on Twitter, and read and share our blog as we do our part to raise autism awareness.
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