After your Child Receives a Diagnosis of Autism Spectrum Disorder
- Receiving a diagnosis of autism spectrum disorder (ASD) can be difficult for a family. Some parents may question if the diagnosis is accurate. If parents have questions, they can ask the provider about his or her training and to explain the types of diagnostic tools used. Discuss any concerns in diagnosing ASD. While some may seek a second opinion, be mindful not to delay getting needed services.
- Along with a diagnosis of autism, parents have many emotions and may feel overwhelmed with all the options for treatment and therapies. After a child has received a medical diagnosis of autism spectrum disorder, parents should seek a reputable healthcare provider, particularly a developmental pediatrician or advanced practice nurse, who specializes in autism and has experience treating the disorder. After meeting with the physician, parents should work together to develop a treatment plan that addresses the child’s specific speech and language, occupational, physical, and behavioral needs.
- Parents and caregivers can read books and search the internet to find information about autism as well as resources such as local services, interventions, therapies, programs, and supports. Parents can explore government agencies, organizations, research studies, and local groups that can provide information, guidance, and support. Searches may also help to identify conferences, webinars, and workshops providing current educational, medical, and therapeutic information. By attending, parents can also network to connect with other families, professionals, and community service providers in their area.
- Parents should contact either the early intervention program or the special services department in the local school district as early as possible. These organizations are the primary source of academic and educationally based therapeutic intervention for the child.
- Parents might find it helpful to set up some folders or large envelopes in a organizational bin or filing cabinet to store information. It will be helpful to have a centralized location to keep information about service providers; medical, therapy and school reports; schedules; receipts and financial information; reading material; and other information related to the person with ASD.
- Revealing the diagnosis of autism to others is a personal decision. Those who work with families of children with ASD on a regular basis find that it is most helpful for families when others are aware of the child’s needs. Without this knowledge, people may misunderstand the child’s behaviors. People tend to be more understanding when they are educated about the disorder and aware of the child’s strengths and challenges. Disclosing the diagnosis to those involved with the child helps them to support the child’s needs.
- It’s important for children with ASD to be exposed to as many learning experiences as possible. Since many children with ASD have difficulties with communication, social interaction and transitions, community experiences are great opportunities for learning. It may be difficult for parents to bring their child with ASD to common places like the grocery store and library because of the difficulties these children have. It may take additional planning and support, but these experiences provide practice and help the child become more familiar with the community and other people.
Helpful Resources
What to Do After the Autism Diagnosis
Advocacy Toolkit – Autism Speaks Family Services Toolkits
After the Diagnosis (Autism Advocate)
Autism: A Practical Guide for Parents Alan Yau; Create Space Independent Publishing Platform; ISBN 1481171372
The Autism Checklist: A Practical Reference for Parents and Teachers Dr. Paula Kluth; Jossey-Bass; ISBN 0470434082
Autism Every Day: Over 150 Strategies Lived and Learned by a Professional Autism Consultant with 3 Sons on the Spectrum Alyson Beytien; Future Horizons; ISBN 1935274503
Autism in the Family Robert Naseef; PhD.; Brookes Publishing; ISBN 1598572415
The Autism Mom's Survival Guide (for Dads, too!): Creating a Balanced and Happy Life While Raising a Child with Autism Susan Senator; Trumpeter; ISBN 1590307534
100 Day Kit – Autism Speaks Family Services Toolkits
Before You Let the Autism Diagnosis Drive You Crazy
Facing Autism: Giving Parents Reasons for Hope and Guidance for Help Lynn M. Hamilton; WaterBrook Press; ISBN 1578562627
Making Peace with Autism Susan Senator; Trumpeter; ISBN 1590303825
A Parent’s Guide to Asperger Syndrome & High-Functioning Autism Sally Ozonoff, Ph.D., Geraldine Dawson, Ph.D., James McPartland; The Guildford Press; ISBN 1572305312
A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know Fred R. Volkmar and Lisa A. Wiesner; Wiley, ISBN 0470394730
Ten Things Every Child with Autism Wishes You Knew Ellen Notbohm and Veronica Zysk; Future Horizons; ISBN 1935274651
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For more information about this program contact:
KohlsAutismAwareness@childrens-specialized.org