Autism Spectrum Disorder Resources
If your child has been diagnosed with Autism Spectrum Disorder (ASD) or you have concerns about your child’s social language and general development, here are some autism resources to help guide you on your journey.
When discussing autism spectrum disorder (ASD), it is important to remember that this is not a one size fits all model. There’s a reason that it’s called a spectrum and autism can vary widely from individual to individual. Additionally, ASD can intermingle with other diagnoses such as ADHD, which further muddies the water. While there isn’t one true autism out there, it is still helpful to know what autism is and what it is not.
When we are concerned about autism spectrum disorder, the biggest developmental marker that we look for in young children is delayed social language. When we see differences in a child’s babbling and first word development and social reciprocity (joint attention, eye contact, shared gaze, etc), then we start to wonder what else may be going on. Delayed language can be present for a variety of reasons but autism is one big thing that we look for. If you have concerns about your child’s development, especially their language development, talk to your pediatrician about scheduling a developmental screening. Your local developmental preschool may offer screenings, but so do independent speech pathologists like myself. Impaired language and social reciprocity are two of the three hallmark traits of autism (the third being repetitive, stereotypical behaviors). There is truly no one more qualified to support social language development than a speech language pathologist with expertise in early intervention.
Resources
Where do you turn when you suspect or your child has been diagnosed with autism spectrum disorder?
There are so many resources out there that it can be completely overwhelming, so I’m only going to list a couple so that you can go down your own rabbit holes. I would recommend leaning towards neurodiversity affirming resources as these are the most supported by adults in the autism community. Be wary of resources that present autism as something that needs to be cured.
The American Academy of Pediatrics has a website designed to provide parents with resources for a variety of needs, including autism. You can visit their Healthy Children website to get helpful insights to guide your family.
The American Speech and Hearing Association (ASHA) also has several helpful pages dedicated to autism, which I think can be a helpful guide for parents.
The Autism Self Advocacy Network works to empower autistic individuals to live fully, with equal access and opportunity. Their motto is “nothing about us without us,” to ensure that the autism community is involved in decision and policy-making. The website also has many helpful resources.
The Autism Society is dedicated to helping provide meaningful connections for individuals with autism. They have a lot of resources on their website and are actively involved in creating positive change for people in the autism community.
Therapy Approaches
If your child has been diagnosed with autism, you may be wondering about the best therapy options. Project AIM, which was partially funded by the National Institutes of Health (NIH) and the National Institute of Child Health and Human Development (NICHD) released a meta-analysis examining various intervention approaches in 2020 and can help guide your decision making. A caveat; the researchers noted that ALL interventions reviewed in Project AIM needed more rigorous studies to clarify their effectiveness but they were able to form some general conclusions. Autism researchers can and should be utilizing higher quality study designs to fully determine the effectiveness of interventions.
Developmental Approaches
Developmental approaches are rooted in the developmental theories of learning, which posits that learning occurs by the child’s exploration of their world and is supported by scaffolding from adults. Interventions include DIR/Floortime and Hanen models. The idea is that deficits in social reciprocity early on in the child’s development (such as joint attention) disrupt the quality and duration of child and caregiver interactions. Developmental interventions are provided in the context of play and are child-led. The caregiver is guided by the interventionist to follow the child’s lead while also engaging in meaningful communication to increase the quality and duration of social interactions with their child. Improving the synchrony of child and caregiver interactions appears to be effective, but more research, including randomized control trials (RCTs) are needed to determine the full effectiveness of developmental approaches. Project AIM considers this approach as promising, with more research needed.
Behavioral Approaches
Behavioral approaches to autism include any intervention approach based in behaviorist learning theory, such as applied behavioral analysis (ABA). These theories suggest that learning occurs based on stimuli and responses to those stimuli and are driven by positive and negative reinforcement. The classic example of behavioral learning would be a toddler touching a hot stove. The hot stove (stimulus) makes the child remove their hand to stop the pain (response), which results in a learned behavior (never touching the stove again). Behavioral approaches have been around the longest and of all the interventions for autism, insurance is most likely to pay for these services, which further increases their prevalence. Project AIM showed that behavioral approaches like ABA showed some effectiveness but were not found to be the most effective intervention. The bottom line is that behavioral interventions could be more effective, and modern therapy approaches that combine multiple theories of learning, including behavioral approaches are likely the future of autism therapy.
Naturalistic Developmental Behavioral Interventions (NDBI)
The most promising treatment approach combine theories of both developmental and behavioral approaches. NDBIs utilize natural behavioral reinforcers in play-based interactions with shared turn-taking to teach developmental skills. The targets for learning are skills that will allow the child to participate more successfully in reciprocal social interactions. We know that learning is both behaviorally and developmentally driven so an approach that utilizes both theories of development stands to be the most effective, and research bears that out. Out of all autism therapy approaches, NDBIs are the most supported by randomized control trials (RCTs) in Project AIM’s meta-analysis. However, while most people have heard of ABA, very few know that NBDIs even exist. NDBIs include Enhanced Milieu Teaching (EMT), Early Start Denver Model, and Pivotal Response Training. States should seriously re-examine their autism insurance mandates to expand their coverage to NDBI approaches. These interventions are promising and have more research effectiveness and rigor behind them than do traditional behavioral interventions like ABA. It intuitively make sense why NDBI therapy works the best. We know that learning is driven by multiple factors, including behavioral, biological and social influences. A therapy approach that combines multiple theories of learning should work better and research thus far indicates that is likely the case.
Interventions with little to no research backing:
This is controversial but it is important to note that TEACCH, sensory-based approaches, technology-based approaches (where technology was the sole intervention and is not to be confused with AAC) and animal-assisted approaches showed limited effectiveness or had too few research studies to show effectiveness in Project AIM’s meta-analysis. Any intervention marketed as such should be viewed cautiously.
