When a child receives a diagnosis of an autism spectrum disorder (ASD), parents and family members typically experience a range of feelings. These feelings can include grief, denial, anger, fear and confusion.
If you are a parent, you may feel or have felt these emotions. It is important to know that you are not alone–and that many parents experience these same emotions. It is also vital to recognize and work through these feelings as you begin to search for understanding, services and support for your family—and for your child with ASD.
- educate yourself and your family members
- recognize the characteristics
- be prepared for numerous decisions
- seek support
- be open to support groups
- underestimate the importance of an appropriate educational placement
- neglect to learn your child’s rights
- fail to keep organized records
- forget to locate available services
- overlook the needs of your entire family
One of the first steps is to learn as much as you can about the diagnosis and how it affects your child. Unfortunately, there are still no clear answers about the cause of an autism spectrum disorder. There are a wide array of videos and print materials available to help members of your immediate or extended family, who may be struggling to understand ASD.
As you learn more about ASD, you will see that there are characteristics common across all individuals. Being aware of the characteristics that apply to your child will enable you to begin seeking supports, and appropriate programs and treatment approaches.
Throughout your child's life, you will be expected to make decisions for which most of us are not immediately prepared. These decisions are further complicated when faced with laws with numbers, therapies with abbreviations, government service agencies with acronyms, medical jargon and an array of educational approaches.
Making sense of the information can be overwhelming. It is helpful to know that there are others who have been down this road and who can be of assistance in helping to untangle the web of agencies, services and resources.
There are national organizations, such as the Autism Society of America (ASA), that exist to support families, as well as advocacy groups for persons with ASD and their families. Additionally, state and local ASA chapters exist in most states. The Indiana Resource Center for Autism also has a wealth of information that is relevant no matter where you live.
Support groups can help families find comfort, acceptance and understanding of issues as the individual with an autism spectrum disorder goes through each stage of life. Whether or not you currently feel a need to actively belong to a support group (either in person or via social networking), making an initial contact can provide valuable information.
Whatever the age of your child, one of the most important choices will be an appropriate educational placement. Children with ASD can—and do—learn.
In some cases, children are being identified under the age of 3 years old. Your local county or state early intervention program can serve children under the age of 3, who are identified and/or suspected of an autism spectrum disorder. Most of these programs are free, or charge on a sliding scale, and include supports/resources according to the needs of the child and family.
School-age children (age 3 to 21) identified with ASD are served by the local educational agency. A good multi-disciplinary educational evaluation is necessary to determine educational need and the type of specific services your child needs.
The Individuals with Disabilities Education Act (IDEA) provides for families to be actively involved in making decisions that affect their child's education. Learning your rights under this law will make it easier to participate in the important decisions surrounding your child's education. Information about accessing special education services can be obtained through your local school district. They can provide information as you begin to access your educational system.
Record keeping is a strategy that can help in your efforts. As your child matures, numerous professionals will need to know specific information about your child. A developmental history provides important diagnostic, evaluation and programming information—even into adulthood. No doubt you will have volumes of information by that time.
Keeping information in an organized and concise manner will not only help you remember the information, but will be easier for busy professionals to access and utilize.
Identification of the needs of your child and family is vital. Each family is different and each child with an autism spectrum disorder is different. As a result, your needs will differ and shift as your son or daughter matures.
Examples of services that individuals with ASD and their families may require include physical, occupational and speech therapy; behavior assessment and support; residential programs; medical and dental care; financial assistance programs; advocacy; legal information; respite care; intensive early intervention; sibling support and education; and socialization, recreation and vocational training.
Accessing services can differ from community to community. Be sure to reach out to your support community to locate critical agencies, supports and resources.
As a parent of a child with an autism spectrum disorder, there are many new things to learn. At times, it will be quite challenging to balance routines, schedules and plans so that all family members feel accepted, supported and valued.
Be sure to make time for all family members to revitalize and gain perspective. Maintain your sense of humor. Laugh together to relieve tension. You will have your ups and downs. Keeping things in perspective and taking time for yourself are vital in reducing the stress that is common when parenting any child—including your child with an autism spectrum disorder
Parenting a child with ASD can be challenging. There are numerous things to learn and balance, including schedules and plans, so that every family member feels loved, accepted, supported and valued. Educating yourself, learning your legal rights, seeking support and maintaining a sense of humor will help parents as they embark on this unique journey.