Autism Diagnosis and the Next Steps
Diagnosis and the Next Steps:
After an initial autism diagnosis it is typical for families to feel fear, anger, denial, sadness, and a mix of other emotions. It is also common to feel intimidated and unsure of what your next steps are in the process. The importance of having an honest and informed relationship with your healthcare providers, services providers, and other members of the individual's team is pertinent in the treatment process. These team members will help guide you in making informed decisions regarding the health, education, and treatment of your child. It is important to understand that currently there is no cure for autism however, there are a wide variety of behavioral interventions and services that can help the individual live their most independent life.
Early Intervention:
Early intervention is a key element in the individual’s learning process if there is a learning or communication delay before the age of 36 months. These are services that children from birth to 3 years of age (36 months) can receive to help them learn important skills. Some of these services may include speech therapy, occupational therapy, physical therapy, and behavioral therapy. Research shows that early intervention services can “greatly improve a child’s development” (Centers for Disease and Control, 2015). These services are also available to children before an official diagnosis is made. The Individuals with Disability Education Act (IDEA) provides these services for children who are at risk for developmental delays. To find out more about these services in your area and how to utilize them for your child, you can contact your local school district.
Building Your Team:
The next step is to build a well rounded team that suits your families needs. Once the individual has a diagnosis it is beneficial to their progress to build a team of professionals to assist in their treatment. “It takes a team of people to help support an individual with autism” (Autism Speaks, 2018). These team members are going to be a valuable part of the overall treatment process. Some of your team members may include your primary care provider (pediatric), neurologist, genetic specialist (if needed), developmental pediatrician, or psychiatrist. Other members that you will assemble as an integral part of the team include service providers such as: Licensed and Board Certified Behavior Analysts, Speech and Language Pathologists, Occupational Therapists, and/or Physical Therapists.
Here are some sample questions to ask providers to help ensure you have a solid team and that empirically validated approaches are being used in the individuals treatment package.
What research supports this intervention?
What training has the staff received?
What are the interventions goals?
How is the intervention individualized for my child?
How do you access my child’s progress?
How will we work together as a team?
What steps do you take if my child is not making progress?
After an initial autism diagnosis it is typical for families to feel fear, anger, denial, sadness, and a mix of other emotions. It is also common to feel intimidated and unsure of what your next steps are in the process. The importance of having an honest and informed relationship with your healthcare providers, services providers, and other members of the individual's team is pertinent in the treatment process.
Treatment Options:
There are a variety of treatment options that will be thrown your way as you begin your research. “According to reports by the American Academy of Pediatrics and the National Research Council, behavior and communication approaches that help children with ASD are those that provide structure, direction, and organization for the child in addition to family participation” (Centers for Disease and Control, 2015). A critical element is to choose treatments that are empirically validated through research, as these are the only options proven to increase behavior and decrease maladaptive behavior. Applied Behavior Analysis (ABA) is a therapy based on the science of human behavior and learning. ABA is not a “one size fits all” type of approach as each program is written to be individualized to meet the needs of the learner. There are various elements in an ABA program which can include:
Discrete Trial Training (DTT)
Early Intensive Behavioral Intervention (EIBI)
Pivotal Response Training (PRT)
Verbal Behavior Intervention (VBI)
Communication:
Communication is a key element as you take your next steps forward. You will want to communicate with the individual's team members on a daily basis. Some ways to do this are face to face interactions or using a notebook where you can write to one another back and forth. This also includes setting up team meetings at least once per month where everyone can communicate about progress and what steps are going to be taken next. A key part of communication is to be an active participant in the treatment sessions as it allows you to see first hand what is going on during treatment. As an active member in these services will be able to observe your child and work with the team members to ensure you are utilizing techniques cohesively. Research shows that being an active participant increases the skill level of the parent/caregiver and allows you to more closely monitor progress.
Resources for Families:
Below you will find resources from Autism Speaks to help you after the initial diagnosis is made.
The Autism Speaks Parents Guide to Autism is designed to help support and promote a positive future for your family and child.
The Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children was created specifically for families of children ages 4 and under to make the best possible use of the 100 days following their child's diagnosis of autism.
The Autism Speaks 100 Day Kit for School Age Children is a tool designed to help assist families of children between the ages of 5 and 13 recently diagnosed with autism during the critical period following an autism diagnosis.
References:
Assembling your team after a diagnosis. (2018, September 2). Retrieved from http://www.autismspeaks.org
Treatment (2015, February 24). Retrieved from http://www.cdc.gov