PFA Tips: After the Diagnosis… Where Do I Begin?

We know how overwhelming everything seems right now. That feeling will come and go, and some days you will see giant leaps, and other days, setbacks. But it’s okay, and you will find your place in all of this.

Find a local support group
We encourage families to join a local support group or network, as we feel the best information you will ever get is from other parents. In addition, there are several Facebook support groups for parents of children with Autism that provide responsive, caring, and supportive feedback. For example, the Baltimore AUTISM Parents is a closed group and its members are actively sharing and offering feedback. Similar groups exist in other counties. To find a support group in your area, visit our online provider database and choose the category Support Groups.

Read. But not too much.
It’s natural to want to learn as much as possible about this diagnosis that may seem all consuming right now. It’s easy to drown yourself in books and articles, so try to slow down and pace yourself. There are books written by professionals, parents, and self-advocates that offer tremendous insights into Autism, including “Ten Things Every Child with Autism Wishes You Knew” by Ellen Notbohm and “Look Me in the Eye: My Life with Asperger’s” by John Elder Robison, and “The Reason I Jump” by Naoki Higashida (all available on Amazon).

We have articles on our website for newly diagnosed families. Our PFA Tips articles are helpful not only for parents, but other caregivers, family members, teachers, advocates, and individuals with Autism. Our “PFA Tips: You Have Autism” will help guide you when you are ready to share this diagnosis with your child.
Autism Speaks offers their 100 Day Kit for Young Children and 100 Day Kit for School Age Children created specifically for newly diagnosed families.

Help your family and friends understand Autism
We have an article that describes the autism experience using everyday examples. This might be helpful to share with family members, friends, or anyone who works with your child. “PFA Tips: Explaining Autism Using Everyday Examples”

Explore our Autism By Age checklists
These checklists are a guide for the issues you need to address, and contacts you should make, not only for services, but for support as well.

Discuss therapy and treatment options with your doctor
There are many available therapies. Typically, therapies are designed to address difficulties in communication, social skills, and sensory issues. In addition, therapies attempt to mitigate aggressive, self-injurious, or repetitive behaviors. For a description of the different types of therapies, please visit our Therapies & Treatments page. We encourage you to discuss with your doctor before beginning any therapy or treatment.

Sign up for the Autism Waiver Registry
The Autism Waiver, through Medical Assistance, allows eligible children with Autism Spectrum Disorder to receive specific services to support them in their homes and communities. To be placed on the Autism Waiver Registry, contact 1-866-417-3480. For more information on the Autism Waiver, please call the Maryland State Department of Education at 410-767-1446 or the Maryland Department of Health at 410-767-5220.

Remember that you have TIME, so please do not feel that you need to read everything right away. This is a journey, so just focus on your priorities that are relevant now, as those will change over time.

© 2022 Pathfinders for Autism