Your Child Received an Autism Diagnosis. What’s Next?
By: Erin Vollmer MS, CCC-SLP
Receiving an autism diagnosis for your child is an emotionally complex experience. Whether you expected it or it’s coming as a shock, an official diagnosis of autism spectrum disorder (ASD) can make parents feel both overwhelmed and uncertain about what steps to take next.
Take a deep breath and start by remembering this. You’re not alone on this journey.
According to the CDC, about 1 in 36 children has been identified with autism. There’s a strong community of parents of children with autism out there, and a plethora of information available through some amazing resources.
With the right support and tools, you’ll be able to help your child thrive and navigate some of the challenges that can come with an autism diagnosis.
Here are some recommended steps to take after your child receives an Autism diagnosis:
#1: Educate Yourself
Knowledge really is power. In order to best advocate for your child’s needs and to provide the necessary support, it’s important to educate yourself about ASD.
Autism is a neurodevelopmental disorder that involves persistent challenges with social communication and the presence of restricted, repetitive behaviors (RRBs).
Symptoms can fall along a spectrum of characteristics, and range in severity. A doctor will assign a level when giving an autism diagnosis. Levels describe the level of support that the child needs, and include:
ASD Level 1: Requiring Support
ASD Level 2: Requiring Substantial Support
ASD Level 3: Requiring Very Substantial Support
Learn as much as you can through research and reputable sources online (see our resources section at the end!). Advocate for your child in the educational setting by taking action like ensuring their IEP matches their needs. Speak up for your child’s needs when discussing coverage for therapy services with your insurance provider.
#2: Seek Professional Guidance
Pediatricians, developmental specialists, psychologists, and neurologists, along with specialists such as therapists, have valuable knowledge and experience working with children with autism.
When your child receives their diagnosis, don’t be afraid to ask questions. If you’re feeling overwhelmed at the time of an appointment or think of something later on, reach out. These professionals can provide valuable insights, recommendations, and referrals to therapies and other services that can benefit your child.
#3: Build a Support Network
Building a strong support network benefits both you and your child.
You can connect with other parents of children with autism through local organizations, social media groups, and online forums. These platforms offer a safe place to share experiences and learn about resources from others who understand.
Receiving an autism diagnosis for a child can be life-changing for many parents, bringing many emotions and overall changes to a family. Practice self-care. Seek professional help for yourself and support from friends and family to cope.
#4: Start Early Intervention Services
Early intervention is critical for children with autism. Research shows that early interventions for autism are more likely to have major long-term positive effects on symptoms and skills later in life.
The first step is to research providers and make an appointment for an evaluation. Services such as speech therapy, occupational therapy, physical therapy, and applied behavior analysis (ABA) may benefit your child.
Ongoing, weekly therapy can address delays or difficulties in communication, social interaction, behavior, sensory integration, and other areas.
#5: Implement Home Strategies
Start implementing strategies at home that can support your child’s language and social skills.
Visual schedules, social stories, and Augmentative Alternative Communication (AAC) are just a few tools that may benefit some children with autism. They can encourage and reinforce communication, even if the child isn’t verbal.
Resources for Parents
Here are some valuable resources and social media accounts that parents of newly-diagnosed children with autism can follow for information, support, and inspiration:
Autism Speaks (@autismspeaks) – Provides support, advocacy, and resources for individuals with autism and their families. Parents can obtain a 100 Day Kit that helps families make the best possible use of the 100 days following an autism diagnosis.
The Autism Society (@autismsociety) – Offers a connection to resources, news, events, and support for the autism community.
Autism Parenting Magazine (@AutismParentMag) – Tools, resources, and support for parents of children with autism.
FindingCoopersVoice (@findingcoopersvoice) – An autism advocate and mother of a child with autism who works to provide comfort and hope to other parents.
Andi Putt (@mrsspeechiep) – A speech language pathologist specializing in autism offers resources, tools, and valuable information.
The Autism Consultant (@theautismconsultant) – Molly Johnson, Autism Consultant, M.Ed. provides information and tools such as visuals to support parents of children with autism.
Moms Talk Autism Podcast(@momstalkautism) – Discusses issues such as school, family balance, and social issues, for parents raising children with autism.
Daily Autism Podcast (@dailyautismpodcast) – From an autism family of 5 children, this podcast discusses news and parent research.
Additional Resources
When your child receives an autism diagnosis, it’s normal to feel a range of emotions that include uncertainty of what to do next.
Some recommended next steps include educating yourself, seeking professional guidance, building a support network, starting early intervention services, and implementing home strategies.
Receiving an autism diagnosis is just the beginning of a unique and rewarding journey. Remember that you’re not alone. The resources and communities available can help both you and your child, making sure he or she thrives.
TherapyWorks is here to help your child succeed. Our team of specialists are experts in working with children on the autism spectrum, and offer ABA, speech therapy, occupational and physical therapy in-clinic (in Northfield, IL), in-home (in Illinois and Michigan) and via teletherapy (nationwide).
If you would like to learn more, or discuss your child’s specific needs, please don’t hesitate to reach out to TherapyWorks!
References
Aguiar, M.C.M.D., Ponde, M.P. (2020). Autism: impact of the diagnosis in the parents. Jornal Brasileiro de Psiquiatria, 69, 149-155. DOI: https://www.scielo.br/j/jbpsiq/a/PrHkCRLmZFkwbKCKjQsy8Xb/?format=html&lang=en
Makino, A., Hartman, L., King, G. et al. Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review. Rev J Autism Dev Disord 8, 267–284 (2021). https://doi.org/10.1007/s40489-021-00237-y
McCarty, P., & Frye, R. E. (2020, October). Early detection and diagnosis of autism spectrum disorder: Why is it so difficult?. In Seminars in Pediatric Neurology (Vol. 35, p. 100831). WB Saunders. DOI: https://www.sciencedirect.com/science/article/pii/S1071909120300425
Erin Vollmer is a pediatric speech language pathologist and Co-Ceo of TherapyWorks. TherapyWorks provides ABA, speech, occupational and physical therapy services in-home and in-clinic (778 Frontage Road, Suite 101, Northfield, IL 60093). To inquire about services for your child, complete this short form: TherapyWorks.com/get-started, call or text 312.780.0820.