A blog by Ashilin Mary Mathew

               Social worker

Having a child with Autism Spectrum Disorder is life altering.  It can change how parents identify themselves, determine where and when they are able to go places, affect their friendships, change their social life, and affect career decisions.  It alters relationships with partners or spouses and affects siblings.  

Every parent reacts differently to their child’s diagnosis of Autism.  All parents go through an “adjustment” period. They begin a journey into unknown territory.  Some parents are able to quickly navigate through the difficulties resulting from their child having ASD while others struggle for years before coming to terms with the child’s diagnosis and subsequent life changes.  Parents must strike a balance between doing what is best for their child while also creating a sense of normalcy for others in the family. 

Parents are faced with an ambiguous loss when a child is diagnosed with Autism. Having a child with autism has a major impact on a family. Between the numerous emotional and behavior challenges, social issues, problems at school, professional therapies, and government agency requirements, it puts continuous stress and drain on any family. Often friends and relatives distance themselves and provide minimal help, leaving the parent(s) feeling isolated. There is no closure and each day brings new challenges for parents. A common problem for parents of children with Autism is to find the right resources. Many parents with children with Autism worry that they could or should have done something to prevent their child's problems. They also agonize over whether they could do more now. They feel angry at their circumstances, which set them apart from other parents, and frustrated that they can't enjoy family life and share in the ordinary activities as easily as normal parents.

After a child is diagnosed with autism spectrum disorder (ASD), parents may feel unprepared or unable to provide their child with the necessary care and education. Parents should know that there are many treatment options, social services and programs, and other resources that can help. With proper therapy sessions, children with autism can improve their modes of communication and socialization to live very productive independent lifestyles in society. Families that seek out and access personal and professional support services are able to cope with stress better. There are many kinds of support services available to families including parent social support, professional formal support, and respite care.

Parent social support includes the supports (i.e. emotional, informational, or material) parents receive from friends, relatives, neighbors, co-workers, or others. These supports can be provided in a group or one-to-one format. Many parents access these supports through parent support groups at which they can learn about a variety of topics (i.e. accessing services, managing challenging behaviors, teaching new skills, etc.) and talk to other parents about their experiences raising a child with a disability. These supports are also available through relationships with professionals who are able to provide them with information, materials and emotional support in response to any questions or concerns a parent may have.

Professional formal support include those services provided by community agencies and professionals. These can also include those services provided by a counselor, social worker, psychiatrist or therapists to guide parents and families in coping with the stresses in their lives. One major support professionals can provide is to teach parents the skills necessary to engage in effective problem solving. Effective and efficient problem solving skills can help alleviate a lot of stress for parents because they can become part of the solution when addressing issues surrounding their children. The six basic steps of effective problem solving are: (1) identifying and defining the conflict, (2) generating possible solutions, (3) evaluating the pros and cons of solutions, (4) deciding on the best solution, (5) implementing the decision, and (6) evaluating the results of the decision. When parents and professionals can collaborate in the decision-making process, the potential for stress can be greatly reduced.

Another assumption in this area is that educational qualification and economic status of a family greatly influence parenting experience and coping mechanisms of parents of children with autism. But, studies show that income and education of the parents does not impact greatly on the care and treatment of the child. Thus, a universal care plan and training for children and parents can be organized to ensure wellbeing of children with Autism. Studies also reveal that all the parents understand the significance of early mode of intervention and various therapies. They understand that support groups have greatly assisted the children/parents/siblings to handle important situations in life and get positive rewards in life towards working for the betterment of the child with Autism.

Further researches can be done on the efficiency and effectiveness of services provided by institutions were children with autism and their families seek help. This will help to suggest better alternatives to the institutions on how to provide standard and innovative ways of care and facilities to the children with autism and their family.

Thus, it's important to find a social worker, psychiatrist and other therapists who has specific experience working with parents of children with special needs. The team of professionals provides families with the latest guidance along with promising solutions to handle life’s everyday challenges with heightened understanding. They can also provide the most current information and interventions about Autism so that parents can make the most informed decisions about what will benefit their child. This team of professionals can play the role of an educator in spreading awareness about Autism, its symptoms, treatment and management among normal people to reduce misconception/stigma related to it. They provide counseling facilities to parents who breakdown both physically and emotionally after the diagnosis. They can ensure early diagnosis of suspected children and the provision of continuous training for children with autism. Professionals can facilitate the empowerment of parents of children with Autism in becoming the best resource person for their child.

Changes in attitude can make a big difference. It’s true that many people go through a difficult time when their child is first diagnosed with autism. But after a year or two, most do learn to cope, enjoy their child's achievements and their own lives.