From the emotional stress of the initial diagnosis to the ongoing financial stress of expensive treatments and therapies, autism affects families in many ways. Coping with these stressors can create stronger marriages and families, but it takes a great deal of work and an excellent support system.
How Autism Affects Families
From the moment they begin to suspect that their child isn't developing in a neuro-typical way, families of children with autism spectrum disorders begin to face challenges that set them apart from other family groups. This disorder can be emotionally devastating for parents, especially just before and after the child is diagnosed. Additionally, there's the stress of navigating complicated therapy schedules, following through on treatment at home, juggling family commitments with job responsibilities, and many other issues. While these difficulties may feel insurmountable, most families learn to cope and adjust with time.
Autism is an emotional roller coaster ride that begins before diagnosis and continues throughout life. According to a study published in the journal Pediatrics, mothers of children on the autism spectrum frequently rated their mental health status as "poor" or "fair." They had a much higher stress level than the general population.
In addition to the higher stress level, many parents of children with autism experience the following emotions:
- Feelings of being overwhelmed
- Relief at having a name for the challenges their child faces
- Anger at their spouse, the doctors, or themselves
- Resentment of the child and guilt for that resentment
- Despair at the incurable nature of the disorder
- Guilt that something they did may have caused their child's challenges
- Frustration that the parenting experience they have is not what they envisioned
- Feelings of social isolation
- Embarrassment at child's behavior in public
Autism also has an indirect impact on the physical health of family members. Anxiety, depression, and exhaustion all take a toll on the physical health of families with children on the autism spectrum. Stress can lead to lowered immunity, and sleep deprivation may result in difficulty concentrating, memory impairment, and other health complications.
The financial impact on families of autistic children is enormous. Most private health insurance plans do not cover all expenses related to therapy and treatment for autistic children, and the co-pays for office visits and medications often results in huge financial debt. In addition to therapy and medical expenses, there are added financial burdens like specialized educational toys, equipment like weighted blankets and vests, and much more.
According to a study in Pediatrics, having a child with autism resulted in an average of a 14% loss in total family income. It is often extremely difficult for both parents to continue working full-time, which means a reduction in household income to go along with the increased expenses. Since many parents need a full-time job in order to provide health insurance, loss of full-time employment can have a dramatic and negative impact on the family's finances.
Impact on Marriages
One of the biggest ways that autism impacts families is by placing additional stress on the parents' marriage. According to a study published in the Journal of Family Psychology, parents of children with autism were 9.7% more likely to get divorced than their peers. There are several ways that autism stresses the marriage:
- Often, parents accept the child's diagnosis in different ways and at different rates, leading to conflict.
- Inconsistent schedules and numerous commitments make it difficult for parents to spend time together.
- It can be challenging to find child care for children with autism, which also makes it hard for parents to go out as a couple.
- Financial stresses can cause additional conflict between parents.
Impact on Siblings
Autism also affects neuro-typical siblings. These children face many of the same pressures as the rest of the family, and they may not have the full support of parents who are overwhelmed with the needs of their child with autism. Sibling rivalry can become more intense in a family with a mixture of typically developing siblings and children with autism. If the ASD child's need for extra time and attention becomes a permanent issue, as often happens with autism, siblings can feel left out, and resentment can build. However, many families are able to sort out these challenges as long as they can control other stress factors.
A study in the Journal of Autism and Developmental Disorders found that the biggest predictor of sibling emotional adjustment was the presence or absence of other risk factors like low socio-economic status. If these factors were controlled, the experience of being a sibling to a child with autism actually enhanced the emotional and psychosocial health of the sibling.
Reducing the Negative Impact
There are several ways that families can reduce the negative impact of autism:
- Therapy or counseling: Psychotherapy is a valuable tool for dealing with the emotional impact of autism, and family counseling is helpful for dealing with marital and communication problems. In cases of depression or anxiety, medication is an effective short-term remedy. To find a therapist, contact your family doctor for a recommendation.
- Support groups: For many parents and family members, autism support groups can be life saving. Contact with other parents of autistic children eases isolation, improves mood, and increases acceptance and understanding of the disorder. Often, just knowing that others are going through a similar experience can bring much needed relief and help parents cope with the physical and emotional challenges of raising an autistic child. Your school district will be able to recommend a local support group.
- Accepting help: Parents and family members should seek help and support from every source possible. There is nothing wrong with relying on extended family to babysit, or with accepting donations to help pay for therapy and medical expenses. Parents must remember to take a break and spend some time caring for their own needs. An extra nap, a trip to the salon, or an afternoon at the bookstore can recharge the mind and body and alleviate a considerable amount of accumulated stress. Taking care of yourself, helps make you a better caregiver.
Embracing the Positive Impact
Although there are a variety of challenges associated with parenting a child with autism, the disorder can also have many positive affects on your family. Through successfully facing challenges and seeing progress in their child, parents can become more confident and emotionally secure. Facing these challenges as a team can strengthen the marriage as well. The key to keeping things positive is taking care of yourself as well as your special needs child.