April is Autism Awareness Month. Autism Spectrum Disorders (ASD) have garnered a lot of attention over the last several years, first with concern that childhood immunizations cause autism and now to recent changes in diagnostic criteria for autism in the newly revised “Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition” (DSM-V). However, even with autism in the spotlight, confusion about what it is, and how and where to get treatment, still exists. Below are a few tips that may help your family.
What is it?
Autism is a neurodevelopmental disorder, which means that there are differences in how one’s brain with autism develops in infancy compared to one’s brain in infancy who doesn’t have autism. Impacts on individuals with autism are social interactions, verbal and non-verbal communication (inability to recognize and respond appropriately to social cues), and restrictive and repetitive behaviors (inflexible and need for routine, repeating words, or moving the body in a certain way). Autism can range from mild (little impairment, mostly self-sufficient) to severe (significant impairment and requiring regular assistance and/or supervision). The causes of ASD are unknown but there is a hereditary component.
How do I know if my child has autism?
If you suspect that your child has ASD, contact your child’s pediatrician. Typically the doctor will ask questions about your child’s development pertaining to communication, social interactions, and other behaviors at the 18-month, well-child visit (this is the age when screening for ASD can take place). If there were any birth complications, such as prematurity or a prolonged hospitalization for your infant, your child may have been referred to a neurodevelopmental clinic where all areas of development are assessed and appropriate recommendations are provided.
If your child is older (in pre-school or grade school) and has difficulty making friends or interacting with/joining other kids in play, doesn’t engage in make-believe play, does poorly with change, may not seem to understand jokes, and often adheres to literal meanings, you can ask your pediatrician for a referral to a clinic that specializes in assessing children for developmental disorders including ASD.
Typically these several-hour assessments consist of paperwork and questionnaires about your child’s health and behavior, as well as your family’s health. If your child is in school, there may be some questionnaires for teachers. Your child will be evaluated by a physician, psychologist and/or neuropsychologist (someone who specializes in testing to determine learning processes and other behaviors of the brain), and a speech and language pathologist. Meeting with a genetics counselor may also be part of the comprehensive evaluation.
Feel free to ask the clinic what kinds of tests they will do. The Autism Diagnostic Observation Schedule (ADOS) is the gold standard for assessing ASD, however it is very possible to obtain an accurate and thorough assessment without using the ADOS. You may want to contact your insurance provider to make sure the evaluation is covered or what expenses you will be responsible for paying.
My child was diagnosed. Now what?
Starting treatment as soon as possible for children with ASD is highly recommended. Treatment will primarily consist of meeting with a psychologist or therapist, but preferably a therapist that practices Applied Behavior Analysis (ABA). ABA uses effective tools and strategies to teach children with ASD new behaviors and skills necessary for socialization, communication and adapting to change. Therapy for ASD can be very frequent such as multiple times a week.
Also depending on the severity of your child’s ASD and other medical or mental health disorders, medication may be part of the treatment plan and prescribed by a physician.
It’s important to connect with other families that have children with ASD, and there are several reputable national organizations such as Autism Speaks, National Autism Association, Autism Society of America, and Center for Autism and Related Disorders (CARD). Several of these national organizations have local chapters that offer support groups and other resources for families.
Is there anything else?
Yes. Sometimes having a child with special needs such as ASD can be stressful for the entire family. Siblings may be embarrassed about the behaviors associated with ASD, and angry or jealous about the amount of time parents may have to spend with the child with ASD. Marriages and relationships with significant others can become strained and tense.
Working with your health care providers can help you learn ways to successfully manage behaviors associated with ASD. Educating siblings and extended family members can also help to decrease stigma and lead to more enjoyable outings and trips. For children with severe ASD there may be other resources available such as respite care.
– Carnigee Truesdale-Howard, PsyD, ABPP, Pediatric Psychologist with Beaumont Children’s Hospital Divisions of Hematology/Oncology & Gastroenterology