Autism Spectrum Disorder: Family Impact and Dynamics

1. Autism Spectrum Disorder:Family Impact and Dynamics SPED 293A Dr. Elium By: Taylor Bova June 17, 2009

2. Introduction • The stress of understanding, accepting and moving forward from any child’s diagnosis is plenty to deal with but, now more than ever families are having to deal with unavailable resources, high cost of resources, stigma that is associated with families who have a special needs child as well as domestic problems between the family unit at home (mother, father, siblings) and outside family members and community. Having a child on the autism spectrum can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. • Currently, Autism Spectrum Disorders (ASD) is becoming more prevalent than ever with diagnosis up to 1 out of every 150 children, boys four times more likely than girls. Special needs children are increasing year by year. Families, schools and communities are now having to create, implement and modify their lives, curriculum and programs.

3. Parental and Family Issues • According to Stephen M. Shore and Linda G. Rastelli, “ child’s autism diagnosis affects every member of the family in different ways. Parents/caregivers must now place their primary focus on helping their child with ASD, which may put strains on their marriage, other children, work, finances, and personal relationships and responsibilities. Parents now have to shift much of their resources of time and money towards providing treatment and interventions for their child, to the exclusion of other priorities. The needs of a child with ASD complicates familial relationships, especially with siblings. However, parents can help their family by informing their other children about autism and the complications it introduces, understanding the challenges siblings face and helping them cope, and involving members of the extended family to create a network of help and understanding.”

4. Parental and Family Issues • This more than often brings a lot of stress and family hardship. Children who are considered “special needs” usually need certain kinds of care, instruction, supervision and even unique diets. • The stress of the impacts can cause the marriage or a couple to be weak and may cause divorce. Stress is a powerful energy and if it is not controled, it can lead to many problems. • Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing. As a family member and/or friend, one must be aware that the feelings of grief that parents experience can be a source of stress due to their ongoing nature.

5. Sibling Issues • Children pick up from an early age that their brother or sister is different, even if they don't understand what actually is wrong. They also notice other people's reactions, especially their parents and grandparents, to him or her. They may be afraid of asking questions, in case they upset their parents even though they have plenty of questions”(The National Autistic Society).

6. Sibling Issues • Siblings can also be effected in many different ways both emotionally and physically. • This can cause the sibling(s) to feel neglected, unimportant, and even become resentful towards his/her parents and even towards the sibling with autism. • There are support groups created just for siblings of children with autism. The New Jersey Center for Outreach and Services for the Autism Community (COSAC) and The Sibling Support Project of The Arc of the United States

7. Extended Family Members Issues • “Often, extended family members would be happy to help if they only knew what to do. Many feel awkward and unsure of the best way to support the family of a niece, nephew, or grandchild with autism. Simply listening is often enough, allowing stressed parents or siblings to express their feelings of helplessness, anxiety, fear, anger, or resentment without judgment.” -Melinda L. Secor

8. Extended Family Member Issues • The parents or caregivers of a child may go through a period of emabarrassement and may not know how to approach telling family members about their child’s disorder. • Extended family members who lack experience with autism can overcome feelings of discomfort by educating themselves on the basics of the disorder, as well as the specifics of its affects on the child in question.

9. Helpful Organizations For Families • There have been several programs that have been organized by families with children and family members with ASD. Some of these programs are the MIND Institute, Autism Society of America, Autism Speaks, NFAR, and CSAAC (Autism book). These programs have set out to help individuals with ASD and to make sure they are learning new skills and knowledge about life.

10. Helpful Organizations For Families • The CSAAC’s program, for example, mission is “To enable individuals with autism to reach their highest potential and contribute as confident individuals to their community” • (MIND) is also a program that was created to help children and individuals with Neurodevelopmental Disorders. In this program, “Families, scientists, physicians, educators and administrators are working together to understand the causes and develop better treatments and cures”

11. Positive Progression Everyday • There are several different programs and centers located around the world and are available for people when they need assistance and guidance. Families have also been known to support each other and professionals by raising money for funds for research and different programs for helping individuals with ASD. • Families, educators, professionals and community members are hard at work everyday to aid in the search for better programs, treatments, interventions and even medications for people living with Autism Spectrum Disorders.