Lauren Forbes, Nurse Practitioner at Allegro Pediatrics, offers helpful information for families with children who have received an autism diagnosis.
Autism Spectrum Disorder (ASD) is a developmental disability that can affect a child’s social skills, behavior, and communication. ASD can be an overwhelming topic for parents of young children. Below is an overview of what ASD is, as well as a summary of the process for diagnosing ASD in a young child.
What is Autism Spectrum Disorder?
Autism Spectrum Disorder is a neurodevelopmental disorder defined by difficulty in social communication and social interaction, accompanied by restricted, repetitive patterns of behavior, interests, or activities. Autism is often referred to as Autism Spectrum Disorder, or ASD, because it can cause a range of symptoms. These symptoms can vary in number, across time, and between individuals. Additionally, there are varying ranges in the severity of autism.
Signs of ASD are usually evident in early childhood but can be diagnosed at any age.
What causes ASD?
There is no one cause of autism. Research suggests that autism develops from a combination of genetic and environmental influences. It is important to understand that nothing you did as a parent caused your child to develop autism. Additionally, ASD occurs across all socioeconomic levels.
Epidemiology of ASD
About 1 in 59 children (1 in 37 boys and 1 in 151 girls) has been identified with ASD. ASD occurs more frequently in males, with a male to female ratio of approximately 3:1.
ASD is not synonymous with having an intellectual disability. Intellectual disabilities can occur in those with ASD, and it is reported that about one third of people diagnosed with ASD have an intellectual disability.
It has been found that certain disorders have an increased prevalence in those diagnosed with ASD. These disorders include gastrointestinal disorders, seizures, sleep disturbances, attention deficit and hyperactivity disorder (ADHD), anxiety, and depression.
What is the screening and diagnosis process for ASD?
Early identification and treatment can change the course of ASD. A reliable diagnosis of ASD can be made in children as young as 18-24 months, however the majority of children with ASD are identified when school aged.
At Allegro Pediatrics, we ask parents to fill out a standardized ASD screening questionnaire called the MCHAT (Modified Checklist for Autism in Toddlers) at the 18-month and 2-year-old Well Child Check-ups. It should be noted that early screeners are better at catching classic autism as opposed to high functioning autism. Please be reassured that your Primary Care Provider (PCP) will continue to check your child for play, motor, verbal, and non-verbal communication milestones at every Well Child Check-up to help diagnose any developmental delays.
If your child shows signs of developmental delays during a Well Child Check-up or screening evaluation and is less than 3 years of age, your PCP will likely refer your child to an Early Intervention Program. Early Intervention Programs are available based on your location. Please refer to our handout to help determine the best Early Intervention Center for your child.
The Early Intervention Program will provide an evaluation for your child. The results of this evaluation will determine if your child is eligible for services. The Early Intervention provider will then work with you to construct a care plan, including which services will benefit your child and how often these services are needed. Be aware that your child will have regular re-evaluations. These re-evaluations will help determine if any adjustments to their services are needed and when they are ready to exit the program. If your child reaches age three and is still in need of services, care transfers to your local school district. Your Early Intervention provider will help with this process when the time comes.
An evaluation may determine your child does not need further intervention. If your child does not qualify but you still have concerns, please contact your Allegro PCP to discuss the next steps.
What are the next steps if my child is diagnosed with ASD?
There is no single treatment for ASD. Instead, each child is unique, and families have a variety of treatment options. Children with ASD tend to do better if they do not feel overwhelmed, so it is important to understand that you are not supposed to pursue all therapies immediately. This handout offers an overview of the different types of therapies that your child may benefit from. We recommend talking with your child’s PCP about what services to prioritize and what steps to take next.
We often recommend participation in an evidence-based therapy called Applied Behavioral Analysis (ABA). This therapy is intended to partner with parents or caregivers to assess how your child acts and the purpose of their behavior. A treatment plan is then made to teach skills to help reduce your child's problem behavior. By teaching skills to increase positive behavior, challenging behaviors can be reduced.
Autism research is ongoing, and there is still much we don’t know. It is believed that both genetic and environmental factors play a role in the cause of autism. SPARK is the largest genetic study of autism, with the goal to find answers to what makes individuals with autism unique on a genetic level. Please visit the SPARK website for more information and to join this research effort.
We want to recognize how overwhelming this process is for families. If there are times when you feel inundated with information and resources, I recommend partnering with your child’s PCP to identify your child's most pressing need. Focus on addressing that need first. Then, when you feel ready, move on to the next concern. Understand that each autism journey is unique, typically requiring care from a multi-disciplinary team.
Helpful Resources
Websites families may find helpful:
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