Parent information packet

When a child receives a diagnosis of autism spectrum disorder (ASD), parents may experience a range of emotions, from disbelief and confusion to sadness and a feeling of being overwhelmed. This is absolutely normal. Many parents ask, "What do I do next? While there is no simple answer to that question, it may be helpful to learn about the many promising advances in the treatment of children with ASDs. Although no one can predict the future for any child, with or without a diagnosis of autism, the prospects are much brighter for children diagnosed today than they were even a decade ago.

Local and national sources of information and support for families with a child with an ASD are too numerous to count, as the incidence of autism is increasing nationwide and worldwide. Whatever else you may learn from the materials in this packet, always remember this: You are not alone. There are professionals in many disciplines working hard to find the causes, and new and more effective treatments and resources for families like yours.

Understanding the diagnosis of ASD is an important first step. The ASDs include: Autistic Disorder, Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) and Asperger Syndrome. All ASDs are "pervasive developmental disorders," meaning that several areas of development are affected. Although every child with an ASD is different, each has difficulties with communication and social interactions.  Nonverbal communication may be both difficult to initiate and interpret. Making eye contact, varying facial expression and using gestures, like pointing, may not come naturally or easily to those with ASDs. Play skills are often delayed and can be repetitive and unusual. Behaviors and sensory sensitivities vary as well. While some children are good-natured and easygoing, others may have difficult behaviors and little tolerance for change or frustration. Since every child's individual strengths and challenges vary, each will require a different combination of interventions and services specifically tailored to their individual learning and social profile.

Doctors and other health-care professionals use different labels and language to describe children with ASDs. Your child may be identified as having one of the diagnoses listed above - or might be described as "autistic," having autistic features, or being "on the autism spectrum."  It is referred to as a spectrum because every child varies in the skills and abilities that are affected and in severity. After your child has been evaluated by a physician, psychologist or other qualified professional or team of specialists, you will get an explanation of the diagnosis and a written report with recommendations for programs and treatments for home and school.  You, the parent, know your child's strengths, challenges and needs better than anyone else. You are the expert on your child, which makes you the most critical person of your child's treatment team.

Use the resources in this packet - and others that your health care team will explain to you and help you access. Ask questions. Seek advice and assistance. Contact the Autism Support Center in your area. This is an agency especially created to assist you and your family with the many questions you may have. They will work with you in getting the information you need to make decisions about health care, education, social and leisure opportunities, community agencies, organizations and services and funding sources. Many Autism Support Center personnel are parents of children with autism themselves. They truly understand you. They have stood in your shoes and have learned valuable lessons that can save you time, effort and aggravation. They want to help you and your child succeed in whatever you set out to do.