Unit I: Parental & Family Issues
1. Impact of ASD on parents, marriage & career etc
2. Impact of ASD on siblings & extended family
3. Parental Concerns: diagnosis, intervention, progress, life span issues
4. Collaborating with parents & families
5. Parental empowerment: training of parents, formation of support groups, parent networks
1. Impact of ASD on parents, marriage & career etc
Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption.
Parenting stress is the experience of distress or discomfort that results from demands associated with the role of parenting.
Parental stress is an important predictor for intervention outcomes in children with ASD like lower levels of developmental improvement in behavioural interventions, including decreased development of language, communication and other adaptive behaviours.
Maternal Stress
Stress is a natural practice and is related to parenting. This stress also associated with household tasks of caring for a child and it is related to ASD and other developmental disorder. Stigma also plays an important role for mother’s depression. It has been showed that though mothers are involved in care of their child all the time so they are facing more challenges than fathers. In another study concluded that reducing difficult behavior in children with ASD may improve the relationship between parent and child.
The fathers of children with autism are suppressing their feelings most of the time at the cost of anger. One study confirmed that any child disabilities have a greater impact upon the mother than the father. In a study it is indicated that due to having children with autism stressful life events are very common like divorce, separation, moving home, the death of a family member, economic, job, or legal problems that decreases family functioning.
Below are several ways families with children of ASD or autism are affected.
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.
Perhaps the first step to sorting out the difficulties arising in families due to autism is understanding the way it affects family members and relationships. Family counseling can help parents deal with communication and marital problems, whereas psychotherapy can help dealing with autism’s emotional impact. Family members and parents can also consider joining support groups where they can meet other parents with autistic children. Parents must take care of themselves too, besides caring for their children with ASD, as to become better caregivers, they must care for themselves.
2. Impact of ASD on siblings & extended family
A child with autism also influences his or her neuro-typical siblings. The siblings undergo many of the stresses faced by the other family members. Moreover, parents may not be able to provide them with full support, as they are overwhelmed meeting the needs and demands of their autistic child.In families having children with ASD as well as typically developing siblings, a more intense form of sibling rivalry can be seen. The autistic child’s need for more attention and time may cause siblings to feel left out and resentful. However, most families can surmount these challenges if they have control over the other factors leading to stress.
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.
Siblings of a young person with ASD can feel a range of emotions that they may be reluctant to express:
Parents can help safeguard their typically developing children against emotional problems by:
Extended family and friends will probably respond in various ways to your child’s autism diagnosis and behaviour. Some might be ready to support you and your child straight away. Others might take a bit longer to understand how they can help.
Some family and friends might find it hard to support you. Or they might respond in ways that aren’t very helpful. If you find yourself in this situation, there are a few things you can do:
How grandparents can help
When they’re possible, strong relationships with grandparents are good for
children’s development, just like strong relationships with parents. They give
children a sense of belonging and help children build their self-identity.
And when grandparents live close by, they might also be able to help with:
Some families might not have the support of grandparents, but they might choose to ‘adopt’ a special friend, or have people in their lives who take on the role of grandparents.
3. Parental Concerns: diagnosis, intervention, progress, life span issues
Obtaining a diagnosis is a key point in developing a treatment plan for children with autism spectrum disorders (ASD), but little attention has been paid to the impacts of diagnostic practices on families, and the consequent impact on child outcomes. Parents’ experiences during ASD diagnosis for their child can be stressful, and such stress can lead to parental ill health, child-behaviour problems, and poorer child outcomes following treatment. Thus, the conduct of diagnosis may be of particular importance for subsequent child outcomes and parental health. A lack of knowledge regarding best diagnostic practice may ultimately impair treatment efficacy and lead to increased health- and economic-burdens.
While it is important to understand professionals’ views of ASD diagnoses and processes, parents of children diagnosed with ASD are experts on their children and family needs. The goal of diagnostic assessment is not only to clarify the diagnosis but also to help the caregivers and child understand the diagnosis and direct the family to appropriate. Because families are the constant in the child’s life, they are considered best suited to determine their young child’s needs. Providing family-centered care that supports this approach is broadly considered best practice within the field of pediatrics, especially among children with chronic conditions. Family-centered care models have also been linked with increased parent satisfaction, decreased parent stress, and improved child outcomes. Having a thorough understanding of clients’ and families’ ASD diagnostic experience is an important starting point for optimizing care for children with ASD and their families. Parent perceptions and expertise should therefore be understood and integrated into considerations of the appropriateness of existing diagnostic pathways.
A better understanding of the pathways from early concerns to diagnosis is important for determining how to help families obtain an accurate assessment of their child's development and access services at an earlier age. As parents are in the best position to observe their child's early development, doctors rely on them to monitor developmental milestones and report any concerns they may have. These actions can represent critical first steps towards improving the outcome trajectory and prognosis for children with ASD, by establishing an early parent-professional partnership.
For the majority of the autism spectrum disorder (ASD) population, symptoms begin within the first years of life and associated difficulties continue throughout the lifespan. Currently, the research literature focuses more heavily on problems in childhood. However, given that adulthood accounts for the majority of life, more focus should be placed on evidence-based, lifelong treatment and management strategies for ASD.
4. Collaborating with parents & families
When mental health professionals and parents of children with autism spectrum disorders start working together, they bring into this relationship their own personal needs, concerns, priorities and responsibilities, which must be taken into consideration in order to create a mutually satisfactory and functional partnership.
Family involvement is one of the most important—if not the most important—factors in ensuring a child’s success at home and in school. Keeping the child and family at the center of the process will help IFSP or IEP teams create service plans that are guided by the child’s needs and that can be supported by their families. Family members—parents, caregivers, siblings—can provide information such as:
· The child’s strengths and needs
· The cultural and developmental appropriateness of goals and intervention strategies
· Supports that are feasible for the child’s family based on their unique circumstances (Keep in mind that families of young children often implement interventions in the home environment.)
Another way the team can keep families in the center of the IFSP/IEP process is to understand the potential struggles and challenges that families of children with ASD might encounter. Additionally, keep in mind that families can be defined in a number of ways (e.g., single parent household, extended family living together, foster family) and therefore might require different kinds of supports.
Once educational professionals become familiar with the potential struggles and difficulties that families of children with ASD might encounter, they can lessen parent stress and help their children make meaningful progress through the interventions that they provide. Because interactions with school staff can be an additional source of stress for some families, professionals should listen to them, communicate frequently, and be responsive to their concerns and input. Keep in mind that teachers should communicate about the child’s positive behaviors and not just about his or her challenging behaviors.
Teachers can further support families by helping them find an appropriate support network. There are a number of groups or networks that offer supports and services to families of children with ASD (e.g., Autism Support Network). Many parents express great satisfaction when they are able to create networks with other parents with children of similar ages and abilities, and these associations often lead to lifelong friendships.
5. Parental empowerment: training of parents, formation of support groups, parent networks
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.
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.