With improved and consistent early screening, increasing awareness and broader definitions of Autism Spectrum Disorders (ASD), it is becoming increasingly common for the question of ASD to come up in the primary care setting. Sometimes parents present with their own concerns or concerns brought up by school or daycare providers about their children. Other times, the child’s presentation in the office or a positive screen leads the primary care provider to have a concern about ASD. This article will not go into the diagnosis per se, but what the next steps are in the clinical situations when the question of ASD is raised.
When there is a concern about ASD, the first step is to obtain a developmental assessment to rule in or rule out the diagnosis. If the child is diagnosed with ASD, then the next step is to refer to appropriate treatments/services, in home and in school. Contact information for programs that are referenced will be provided at the bottom for easy access.
Assessment
The decision tree is partly based on the age that the child is presenting. For children presenting younger than age 3, the family should be referred to California Early Start. This program is under the Regional Center umbrella and is largely funded by First 5. California Early Start can conduct a more thorough assessment and decide if a child is at risk for ASD or other developmental delays. If a child needs a more involved assessment, Early Start can refer the child for a developmental evaluation (Rady’s Childrens Hospital San Diego -RCHSD Developmental Evaluation Clinic is an option). California Early Start programs can provide a variety of services (infant education, parenting classes, behavioral interventions, occupational therapy, speech therapy) in the office and in the home for children up to the age of 3. Once a child already involved in Early Start reaches the age of 3, he is reassessed to determine if he continues to qualify for Regional Center eligibility (typically based on a diagnosis of Intellectual Disability or ASD). Alternatively, children with more mild-moderate behavioral or developmental concerns can be referred to First 5 Healthy Developmental Services for further assessment and treatment.
For children presenting over the age of 3, the process is different. If there is a concern about ASD but a confirming evaluation is needed, the family should be referred to their insurance behavioral health referral department to request an autism case manager as a point of contact. All of the Medi-Cal plans provide this service. Private insurances may or may not have autism case managers. The case manager can provide referrals for an ASD assessment. Often a family is referred to one ABA (Applied Behavior Analysis – the gold standard therapy treatment for ASD) provider or a developmental psychologist for the assessment. If an ASD diagnosis is confirmed, they are then referred to different ABA provider for treatment.
Sometimes with private insurance, families can call ABA providers or developmental psychologists directly to schedule evaluations. Also families can call RCHSD Developmental Evaluation Clinic to request a developmental evaluation (available for Medi-cal families up to age 6 and for private insurance families up to age 21) or RCHSD Autism Discovery Institute (for families with private insurance). If there is a hiccup in this process involving medical insurance, the child can be referred to San Diego Regional Center for an assessment. In these situations, it is helpful for the family to have supporting documentation of the concern for ASD (for example, notes from the teacher about behavioral and social concerns in the area of ASD, a letter from the physician outlining the reasons for the concern for ASD).
Treatment/Services
Once a solid diagnosis is established, a child should be referred for ABA services, school-based services, and ancillary developmental services as appropriate (speech therapy, occupational therapy, social skills groups). ABA services are typically first accessed through the medical insurance, with SD Regional Center being the payer of last resort. The insurance ASD case manager is the point of contact for referrals to ABA providers.
School based services are accessed by the parents asking in writing for a psychoeducational assessment from their local school district. Putting the request in writing starts an official clock from when an assessment has to be done. A timeline based upon the California Education Code is included.This request should be made for any child with an ASD diagnosis once they have reached the age of 3. Special education preschools are available within each school district for children with ASD, speech delay, and other behavioral concerns that impair educational progress. Typically school districts are hesitant to be the first ones to make a decision about if a child has autism, because school psychologists are not able to diagnose children, but rather they are able to qualify a child for an individualized education plan (IEP) based on known diagnoses. This is why the first step of a proper assessment is so important.
Ancillary developmental services can be accessed through the IEP at school and also on an outpatient basis through medical insurance. Children who are able to access these services in school and on an outpatient basis typically make faster progress than children who only receive these services in school. It is important for primary care providers to try to support parents accessing these services on an outpatient basis if possible, based on insurance approval and parent availability. Many of these services are readily available in Early Start programs, which comes back to the notion of early detection of children who are at risk, so they can access early interventions.
If the family has not already accessed SD Regional Center by this point they should apply. SD Regional Center can provide respite care for families with children with ASD and they become the payer for adult programs and out of home placement after a client ages out of the school system at age 22.
It is our hope that this primer is helpful for primary care providers to help families as they navigate the challenging system for establishing services for their children with ASD. For specific cases, please utilize the SmartCare BHCS Provider Line or refer families to call the SmartCare BHCS Family Line.
Referrals and Resources:
California Early Start: 858-496-4318
San Diego Regional Center: 858-576-2938 Intake form: http://sdrc.org/wordpress/wp-content/media/2018/07/IntakeRef3-17.pdf
First 5 Healthy Developmental Services (HDS): http://first5sandiego.org/healthy-development-services/
RCHSD DEC (sites throughout SD County): 858-966-5817
https://www.rchsd.org/programs-services/developmental-evaluation-clinic/locations/
RCHSD ADI: 858-966-7453
https://www.rchsd.org/programs-services/autism-discovery-institute/
Special Education Timelines in California https://www.f3law.com/downloads/F3_015%20SPED%20Timelines%202015_v1.pdf
Autism Speaks 100 day kit https://www.autismspeaks.org/family-services/tool-kits/100-day-kit