Receiving an autism diagnosis for your child means something different for every family. Your belief system, culture, socio-economic status, and generational influences often affect how you perceive the news.
In certain situations, a diagnosis provides confirmation. Finally, there is a medical term you can use to describe the variety of symptoms you’ve noticed with your child, such as repetitive body movements, sensory processing issues, and tantrums. This diagnosis can be tremendously affirming for parents, a sigh of relief that their “hunch” was right all along.
For others, being the parent of a newly diagnosed child with autism can be devastating news, something that has completely caught you and the rest of your family off guard.
No matter how you respond, it’s crucial to recognize that reactions to a diagnosis are just as diverse as the symptoms on the spectrum.
At Heartlinks ABA, we understand your challenges and are here to support you with a variety of services to help your family through your journey. This guide aims to help you manage the stages of acceptance and provide strategies to cope with your child’s diagnosis.
Understanding and Accepting Your Child’s Diagnosis
Acceptance is the first and most important step. Remember, your child’s diagnosis of autism spectrum disorder (ASD) is not a reflection of who they are as a person or a reflection of their potential. Educate yourself about ASD by learning how autism affects the brain or reading about the causes of ASD; the more you know, the more empowered you’ll feel.
Accepting an autism diagnosis means allowing yourself the time and space to process the news. Feeling a range of emotions and asking for help when needed is okay. If you have doubts or concerns, consider discussing them with a specialist, as misdiagnoses can happen. Seeking a second opinion or further evaluations may clarify and ensure your child receives the most appropriate support and intervention. Acceptance allows you to focus on the positive aspects and begin to advocate effectively for your child’s needs.
Develop a list of Questions for your Child’s Care Team
It’s only natural that after the initial diagnosis, you and your family will have many questions for your child’s care team. Coping with an autism diagnosis can be overwhelming, and seeking answers is an important step in understanding your child’s needs. Some of those questions include the following:
What specific interventions are suggested for your child?
Typically, some form of applied behavior analysis (ABA) therapy is recommended for children on the spectrum. Using a foundation of reinforcement, ABA therapy is considered the most effective treatment for children on the spectrum.
Does your child’s care team recommend any other treatment, such as ABA in combination with occupational therapy or speech therapy?
How can you monitor your child’s progress?
Learning about the tools and methods to monitor your child’s therapeutic progress and improvements will help you stay informed about their growth. Measuring progress in an ABA program for your autistic child will require qualitative and quantitative data tracking.
For example, skill acquisition in ABA therapy is measured through behavioral tracking, monitoring the frequency, duration, and accuracy of targeted responses. Task analysis and prompt fading help assess the child’s ability to complete multi-step tasks with increasing independence. Mastery is usually defined by evaluating how learned skills are maintained over time and across different settings.
What should I understand about co-occurring conditions?
Often, children with autism have additional conditions or a dual diagnosis, which can dramatically affect their behavior, daily life, and learning. Common conditions include ADHD (attention deficit disorder), which can lead to difficulties with focus, impulse control, and hyperactivity, and anxiety disorders, which may cause excessive worry, social fears, depression, or sensory-related problems. Other conditions such as Down Syndrome, pervasive developmental disorder, seizures, or disintegrative disorder may also be present, further influencing a child’s development and support needs. Recognizing these conditions allows for a more all-encompassing approach to intervention and care.
How can I support my child’s communication skills?
Supporting your child’s communication skills involves learning about their needs and using strategies to encourage that expression. Many autistic children experience delayed speech, non-verbal communication challenges, or even selective mutism, where they may speak comfortably in some settings but remain silent in others due to anxiety. Structured therapies such as speech-language therapy, ABA, or social skills training can provide critical tools for developing communication.
What can I expect in terms of social development with my child?
Social development in children with autism can vary widely, but understanding the common challenges and milestones can help you and the rest of your child’s family set realistic goals. Many autistic children may struggle to understand social cues, make eye contact, engage in reciprocal conversations, or interpret body language or emotions. It’s important to remember that social skills develop at different rates, and progress often depends on early interventions, including modeling, discrete trial training (DTT), natural environment teaching, role-playing, and social stories.
An RBT or BCBA therapist, both certified ABA providers, might recommend that you undergo ABA parent training to help enforce their routine therapy. While there will be challenges, many autistic children will develop meaningful relationships in their way and thrive when given the right tools.
Build Your Autism Support Network
It’s easy to say “get help” when you’re child has just been diagnosed with autism, but if you don’t know how to build a support network around your child’s care, that can be easier said than done. Your support network often includes neurologists, pediatricians, psychologists, and psychiatrists, all of whom play a role in developing an autism treatment plan. But there may be other members of this team, including:
Behavior Analysts (BCBAs): Board-certified behavior analysts provide specialized ABA therapy to address behavioral difficulties and promote skill development using evidence-based strategies.
Occupational Therapists (OTs): They support children and teens on the spectrum in developing the skills needed for daily independent living, including hygiene skills or even how to visit the dentist.
Social Workers: These trained professionals offer emotional support counseling and connect families with local resources and support groups that can help manage the daily challenges of raising a child on the spectrum.
Registered Behavior Therapists (RBTs): These paraprofessionals work under the supervision of a BCBA and are trained to implement customized behavior intervention plans.
Connect with Support Groups
Joining single or multiple support groups for parents of children with autism provides an invaluable sense of community support and information sharing. These groups offer a space for parents to connect, share experiences, and gain practical advice on managing behavioral challenges, accessing resources, and advocating for their children. They also serve as a source of valuable information, providing insights on therapies, treatments, and local services, often featuring guest experts such as therapists and educators. Beyond information, the emotional support found in these groups helps reduce isolation, offering encouragement and understanding from others who share or have lived similar experiences.
Start Your Journey With Heartlinks
Accepting your child’s autism diagnosis is a journey that involves navigating a range of emotions and challenges. Remember, you are not alone. With numerous locations, including Georgia, North Carolina, New Jersey, and Indiana, Heartlinks ABA offers in-home and community-based ABA therapy to provide personalized support in familiar environments. We are here to guide you every step of the way. Embrace the journey, seek support, and focus on your child’s strengths and potential. For more information and resources, contact Heartlinks ABA.