Hearing that your child has been diagnosed with autism spectrum disorder (ASD) can feel overwhelming. The moment you receive the diagnosis, a flood of questions often follows. Will my child ever speak? Will they live independently? Will they form meaningful friendships or relationships? These are natural concerns, but before diving too far ahead, it’s crucial to first understand what the diagnosis actually means and what the next steps are.
Autism Spectrum Disorder, commonly referred to as ASD, is a clinical diagnosis. Many parents might assume that their child’s school or even their pediatrician can make this determination, but that is not the case. While pediatricians often conduct developmental screenings and may notice signs of autism, they typically refer families to specialists for a comprehensive evaluation. This evaluation isn’t based on a single test but rather a collection of assessments, observations, and parent interviews. All of this information is considered alongside the criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V).
Interestingly, the diagnostic criteria for autism have evolved over time. Before 2013, many people used terms like Asperger’s Syndrome or PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified) to describe variations within the autism spectrum. Under the DSM-IV, Asperger’s was used to describe individuals with higher language abilities and no significant language delay. These individuals often had advanced speech, which earned them nicknames like “little professor.” However, with the introduction of the DSM-V, these subtypes were folded into a single umbrella diagnosis: Autism Spectrum Disorder. The reasoning was to provide a more cohesive understanding of autism and its wide-ranging manifestations.
According to the DSM-V, for a child to be diagnosed with ASD, they must display persistent deficits in social communication and social interaction across various contexts. This might look like difficulty engaging in back-and-forth conversations, limited use of nonverbal communication such as eye contact or gestures, and trouble developing and maintaining relationships. Additionally, the child must exhibit restricted and repetitive patterns of behavior. These can include repetitive movements or speech, strict adherence to routines, highly focused interests, and unusual responses to sensory experiences such as sensitivity to sounds or textures.
Every child diagnosed with autism is also assigned a severity level, which ranges from Level 1 to Level 3. This classification helps clarify the level of support the child may need. A child at Level 1 may have challenges with social interactions but can speak in full sentences and manage some social situations with support. At Level 2, the child might speak in simple phrases and display more pronounced difficulties in social settings, often needing substantial support. Level 3 represents the most significant support needs, where a child may be nonverbal, struggle with changes in routine, and exhibit behaviors that severely impact daily functioning.
In addition to the core symptoms of autism, it’s not uncommon for children with ASD to have co-occurring conditions. Research suggests that between 70 to 90 percent of adolescents with ASD have at least one additional diagnosis. Conditions such as anxiety disorders, attention-deficit hyperactivity disorder (ADHD), mood disorders, and oppositional defiant disorder (ODD) are commonly observed. Understanding and addressing these co-occurring conditions is critical because they can influence the overall treatment approach and impact the child’s quality of life.
One of the most recognized and evidence-backed treatments for autism is Applied Behavior Analysis (ABA) therapy. Endorsed by the U.S. Surgeon General and the American Psychological Association, ABA uses principles of behavior science to teach new skills and reduce problematic behaviors. Today, compassionate ABA practices emphasize the learner’s preferences, support independence, and prioritize the child’s right to assent or withdraw from activities. Modern ABA practitioners are guided by ethical codes designed to protect the dignity and well-being of their clients.
As a parent, your involvement in your child’s ABA therapy is essential. A skilled Board Certified Behavior Analyst (BCBA) will not only create a tailored treatment plan but will also collaborate closely with you. In ABA therapy, your involvement and active participation is a must. You know your child best, and your insights are invaluable in shaping effective and respectful interventions. You are also a member of the care team.
Beyond ABA, other therapies might also be recommended. Speech therapy can help enhance communication skills and explore alternative methods like augmentative and alternative communication (AAC) devices or the Picture Exchange Communication System (PECS). Occupational therapy focuses on improving fine motor skills, sensory integration, and daily living tasks, while physical therapy addresses gross motor skills and coordination. If feeding difficulties are present, a feeding therapist, often an occupational therapist with specialized training, can assist with chewing, swallowing, and addressing food aversions.
Creating a comprehensive care team for your child can feel daunting, but it’s a vital step. An autism specialist or autism center can serve as a central hub to coordinate care, whether it’s referrals to a gastroenterologist for digestive issues, a psychiatrist for mental health evaluations, or genetic testing to explore potential underlying conditions.
While much of your focus will naturally be on your child, it’s equally important to care for yourself. Studies show that parents of children with autism are at a higher risk of depression, anxiety, and insomnia. The demands of managing therapies, appointments, and daily challenges can be exhausting. Scheduling breaks, accepting help from friends and family, keeping up with your own health appointments, and connecting with support groups can provide much-needed relief and connection. You can join one of our support groups by clicking this link.
Ultimately, receiving an autism diagnosis for your child is the beginning of a positive transformative journey for many people. Armed with the right knowledge, resources, and support network, you can help your child reach his or her fullest potential. Stay curious, stay engaged, and never hesitate to advocate for your child’s needs. The road ahead may have its challenges, but it also holds countless opportunities for growth, joy, and discovery.
For full guidance on what to do after an autism diagnosis, consider checking our FREE online course Now What? Newly Diagnosed to Advocacy from acclaimtraining.com.
We’re here to support you! Reach out to acclaimautism.com and let’s work together in pursuing what’s best for your child.
For more reading on this topic, please check out the following resources:
Alibekova, R., Kai Chan, C., Crape, B., Kadyrzhanuly, K., Gusmanov, A., An, S., Bulekbayeva, S., Akhmetzhanova, Z., Ainabekova, A., Yerubayev, Z., Yessimkulova, F., Bekisheva, A., Ospanova, Z., & Rakhimova, M. (2022, October 11). Stress, anxiety and depression in parents of children with autism spectrum disorders in Kazakhstan: Prevalence and associated factors. Global mental health (Cambridge, England). https://pmc.ncbi.nlm.nih.gov/articles/PMC9806964/
Applied Behavior Analysis (ABA). Developmental Disabilities Institute. (n.d.). https://www.ddiny.org/apps/pages/index.jsp?uREC_ID=1125487&type=d&pREC_ID=1397216
DSM-5 Diagnostic Criteria. IACC. (n.d.). https://iacc.hhs.gov/about-iacc/subcommittees/resources/dsm5-diagnostic-criteria.shtml
Hanley, G. (2021, September 9). A Perspective on Today’s ABA from Dr. Hanley. Practical Functional Assessment. https://practicalfunctionalassessment.com/2021/09/09/a-perspective-on-todays-aba-by-dr-greg-hanley/
Hosseini, S. A., & Molla, M. (2024, February 12). Asperger Syndrome. National Center for Biotechnology Information. https://pubmed.ncbi.nlm.nih.gov/32491480/Mosner, M. G., Kinard, J. L., Shah, J. S., McWeeny, S., Greene, R. K., Lowery, S. C., Mazefsky, C. A., & Dichter, G. S. (2020, September). Rates of co-occurring psychiatric disorders in autism spectrum disorder using the Mini International Neuropsychiatric Interview. Journal of autism and developmental disorders. https://pmc.ncbi.nlm.nih.gov/articles/PMC6669096/
