April is Autism Awareness Month and the focus of this Education Matters, specifically the process of identifying Autism in children. Having passed all though my schooling undiagnosed and unaided with my Autism and having now practiced education law for 10 years, this is a matter of personal, as well as professional, interest to me.
It’s been almost 25 years since I graduated high school and I wanted to know about today’s processes and resources for ensuring Autistic kids are being identified and served. So I turned to Debra Sugar, LCSW. Debra is a licensed clinical social worker with over 20 years of experience. She was a school social worker in Albuquerque for 12 years, working with district programs for students with Autism Spectrum Disorder (ASD). She worked as part of an interdisciplinary ASD evaluation clinic for the past 10 years, where she focused on supporting families and individuals before, during and after evaluation. Currently, Debra practices at Bosque Mental Health Associates with a specialized focus on working with children, families and adults impacted by Autism and other developmental disabilities. She also serves as social work faculty for the New Mexico Leadership Education in Neurodevelopmental and related Disabilities program.
The Paper.: When should a parent or legal guardian (caregiver) get a child evaluated for ASD?
Sugar: There are two categories of ASD concerns. First, the absence or delay of developmentally expected social communication skills such as use of eye contact and gestures, shared enjoyment, back-and-forth conversation and interaction, and development of peer relationships. The second category is the presence of restricted and repetitive interests and behaviors, such as unusual or intensely focused interests, repetitive play, movements, or use of language, difficulty with changes in routine or transitions, and unusual response to sensory input such as sounds, smells, tastes and textures. Caregivers can consult with their child’s primary care provider about any developmental or ASD concerns.
Research and studies show that Autism in girls has been vastly under and mis-diagnosed. Does ASD present differently in girls than in boys?
Girls often have a different presentation than boys and are underdiagnosed. Girls with ASD, compared to boys with ASD, often appear to be more socially motivated and so tend to camouflage/mask well. (Ed.’s note: Camouflaging or masking are the socially acceptable behaviors performed by an Autistic person in order to “fit in” and “get by” in public and social settings and in interactions with other people.). So they may mimic facial expressions, social behaviors and peer interests. They may laugh when others laugh, etc. They may have difficulty initiating socially and offer somewhat canned questions and responses in conversation. So their relationships may look pretty good on the surface, but be more superficial and lacking in the level of social understanding that is typical for their peers.
There are characteristics of ASD common [to boys and girls] but [in girls] they are initially less obvious and often successfully masked, especially among younger girls. Camouflaging/masking is exhausting! After a social encounter, or after being at school all day, girls may be tired, irritable and need a lot of time alone to recover.
How does a caregiver get an evaluation?
If a parent or guardian is concerned about early development, they can obtain an evaluation from an early intervention program. The Family Infant and Toddlers Program is a statewide program administered by the NM Early Childhood Education and Care Department and can provide early intervention services to children up to age 3 who have or are at risk for developmental delays.
To obtain an ASD evaluation, caregivers also can ask their doctor or insurance provider for a list of evaluators in their area. An evaluation from a medical provider may result in a medical diagnosis of ASD, which can open the door to services covered by health insurance.
If there are ASD concerns at school, the caregiver can request that the school conduct an educational evaluation that looks specifically at ASD. This can result in an educational eligibility of Autism and open the door to school-based services such as speech-language and occupational therapies, specialized instruction and supports and school social work.
What should a caregiver expect from the evaluation?
A school evaluation will likely include an interview and/or questionnaires, cognitive and communication testing, occupational therapy testing, classroom observation and Autism-specific assessment.
A [non-school] based evaluation should include an interview with caregivers about a child’s medical and family history, early development, communication, social interaction, interests, activities and behavior. The evaluation may include standardized assessment of the child’s communication skills and developmental/cognitive skills, as well as their daily living skills. The caregiver may be asked to interact in specific ways with their child while the evaluation team observes. The evaluation team may also interact directly with the child and attempt to engage them with toys, activities and conversation, depending upon where they are developmentally. The team may include a psychologist, pediatrician, speech-language pathologist and others.
Over the past two years, tele-health evaluation procedures have been developed that work well for some but not all individuals.
If parents want help finding services or navigating systems, a good resource is the Autism Family and Provider Resource Team at UNM’s Center for Development and Disability. It can be very overwhelming for families when a child receives an ASD diagnosis. I think it’s helpful to remember that your child is the same person that they were before the diagnosis, with their own unique set of strengths and challenges. There is a wide range of diversity among those diagnosed with ASD. As the saying goes, if you’ve met one child with Autism, you’ve met one child with Autism.