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Now What?

It’s estimated that 1 in 36 children in the US has been diagnosed with autism. This is a significant increase from 2018 when 1 in 44 children were diagnosed. As more children continue to receive diagnoses, an increasing number of parents are asking “Now what?”

 

An autism diagnosis can be life-changing: many parents struggle to find resources, information, and community. No parent is on an island, and the team at Essential Speech and ABA Therapy is ready to help you with the next steps after the initial diagnosis. We’ve outlined the following steps for you below:

Step One: Understanding ASD

In the DSM-5 Autism Spectrum Disorder is defined as: “persistent difficulties with social communication and social interaction.” Many who receive an ASD diagnosis display “restricted and repetitive patterns of behaviors, activities or interests'' that may “limit and impair everyday functioning.”


In other words, ASD is a neurodevelopment disorder typically diagnosed in children who display difficulties with communication and social interactions. Children may struggle to make eye contact, have an unusual tone of voice, or become overstimulated in a new environment. While autism can be diagnosed at any age, the symptoms of ASD typically appear within the first two years of life.


While researchers are still investigating the primary causes of ASD, there are several contributing factors. A child is more likely to be diagnosed with ASD if they have one or more of the following:

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  • A sibling with ASD

  • Older parents

  • Certain genetic conditions (such as Down syndrome or Fragile X syndrome)

  • Low birth weight 1

 

Treatment for ASD should start soon after receiving a diagnosis. No two children with ASD are alike, and it’s imperative to find the right treatment for your child. However, some treatments can be detrimental or promise unrealistic outcomes. In the next section, we’ll review these treatments and how to identify them.

Step Two: Understanding the Debate Around Treatment

All parents want their children to lead happy, fulfilling lives. When a child is diagnosed with ASD, many caretakers rush to find the best available treatment. Unfortunately, many fall victim to non-evidence-based treatments. 


Non-evidence-based treatments lack scientific support. Simply put, these treatments do not appear in scientific journals or do not show measurable improvements in targeted areas. Such treatments include holding therapy, horseback riding therapy, and Transcranial Magnetic Stimulation. When researching treatments for your child, keep an eye out for the following:

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  • Treatments that “cure” or “help people recover from” autism 

  • Treatments that claim to have “fast results” 

  • Treatments that are based on religion

 

Before your child starts therapy, ask your healthcare provider if the treatment is 1) proven to be safe and effective in scientific studies or 2) appears in peer-reviewed scientific journals. Parents can also use search engines such as Google Scholar to read studies for free.

Step Three: ABA Therapy Overview

What is ABA Therapy? Applied behavioral analysis, also known as ABA Therapy, uses evidence-based interventions to improve the lives of children with autism. ABA Therapy focuses on how children with autism function and how therapists can help them adapt to new situations or environments. By using positive reinforcement, environmental arrangements/supports, and an individualized care plan, ABA therapists assist children in the transition from private to public settings. 


With the right care plan and team, children with autism demonstrate improvement in the following areas: 

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  • Communication and language

  • Social skills

  • Functional coping strategies

  • Adaptive daily behaviors


In a 2022 study, 66% - 83% of children showed improvement in emotional, adaptive, problem-solving, social, language, and cognitive behavior after 1-2 years of ABA therapy alone. 4 Many children saw improvements while attending 20 - 40 hour a week programs.
 

What to Look for in a Service Provider 

An outstanding ABA program provides the following services to children and their families: 

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  • Important and Relevant Goals - After the initial assessment, your ABA therapist should take note of your child’s strengths and weaknesses. They will then craft a program specifically designed to meet your child’s needs. This plan may include focusing on self-sufficiency, communication, or developmental skills. ABA therapists should involve both parents and children in each step of this process to ensure the skills being targeted are socially significant for your family. 

  • A Behavior Support Plan - If your child engages in behavior such as meltdowns, physical aggression, or self-injury, your ABA therapist should craft a behavior support plan (or BSP). A BSP focuses on teaching behaviors that replace behaviors of concern, such as appropriately communicating a child’s wants and needs. 

  • Assent - Before starting treatment, ask your therapist if an assent plan is in place. If a child shows signs of distress while in treatment, assent will allow therapists to withdraw as they re-pair, re-evaluate, and re-approach treatment once the child is ready to continue. 

  • Skill Generalization and Family Involvement - The people involved in your child’s life should also be involved in their ABA program! Grandparents, teachers, and friends should be equipped with the skills to reinforce skills taught in ABA therapy. Your Behavioral Analyst will show you several strategies to help promote your child’s skill acquisition. 

  • Skill Maintenance - If you don’t use it, you lose it! A child must practice acquired skills both in their program and at home. These “maintenance checks” ensure that children retain skills and build on them going forward. 

  • Your Child Enjoys the Sessions - Your child’s therapy team must build a strong rapport with the child. If they’re unhappy, bored, or under-stimulated, your child won’t progress. An ABA therapist should engage in play, follow your child’s lead, and positively reinforce good behavior!

Step Four: Finding Research and Services

As more and more children are diagnosed with ASD, parents struggle to find reliable resources for their children. In the age of misinformation, it’s hard to know which sources to trust. We’ve compiled a list of reliable sources below:

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Research and Studies:

 

Parent Resources: 

 

Educational Resources: 

 

Through Their Eyes: Books Written by Authors with Autism 

Step Five: Self-Care and Support

Taking care of a child with autism can be time-consuming and overwhelming. If your child is diagnosed with autism, this can add several hoops to jump through to ensure your child has the proper support across different environments. It may lead to caregiver burnout: a stage of mental, emotional, and physical exhaustion when caring for another’s well-being. As parents help their children navigate the world around them, they must look after their own physical and mental health.

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Anyone who’s flown has heard the saying: “Should an emergency situation occur, you need to put your own oxygen mask on first, before attempting to help those around you.” Why is this an important rule for survival? If you run out of oxygen, you can’t help anyone else with their oxygen mask. Put simply: if you can’t take care of yourself, you can’t take care of your child. 

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For many parents of autistic children, self-care can feel extraneous or out of reach. Below, we’ve compiled a list of self-care tips and tricks for busy parents:

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  • Stress audit - The next time you have five minutes, take a step back and outline the major stressors in your life. Organize them into two categories: large and small. Break down each problem into manageable chunks to improve your situation. 

  • Be Ready to Go - As the caregiver for a child with autism, you know about the importance of routines! Before you leave the house, pack a bag of essentials: wallets, keys, etc. Packing some comfort items for your child will help if the unexpected occurs. 

  • Rest - Many parents have trouble catching 7-8 hours of sleep. But long-term sleep deprivation can lead to physical and emotional problems that make it hard to deal with everyday life. Identify moments where you can catch up on some much-needed rest (even if it’s just a nap) and eliminate blue light from your bedtime routine. 

  • Community Support - Joining a local support group can help you navigate your new normal. Making friends or seeking advice from other parents will help you adapt to new challenges in the future. 

 

If you’re looking to secure resources for your child, the first step is to call your insurance provider. An insurance agent will tell you the maximum benefits your child will receive. The second step is to research your state’s autism mandate. An autism mandate requires certain programs to cover the diagnosis and treatment of an autistic individual. Please keep in mind that each state has its own version of the autism mandate. For example, therapies covered in Georgia may not be covered in Texas. The Beirman Autism Center has compiled a short description of each state’s autism mandate. 

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After you and your pediatrician identify the perfect facility for your child, your child might be put on a waiting list. Due to the ever-increasing demand for services, many children with autism will spend months waiting for services. To minimize waiting time, putting your child on multiple waiting lists may be necessary. 

Step Six: Educating Your Child and Family Members About ASD

As your child grows, you might worry about explaining their ASD diagnosis. Perhaps you think that labeling your child will discourage them or make them feel isolated. However, informing your child will give them a better understanding and motivate them to overcome challenges in their daily life.

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After your child receives an ASD diagnosis, consider informing inform them as soon as possible! While some parents may choose to wait, children with an autism spectrum diagnosis should have the chance to understand, accept, and appreciate their uniqueness by receiving an age-appropriate explanation of their ASD.

 

As your child grows, they may ask questions, such as “Why am I different?” or “Why can’t I be like everybody else?” Telling your child about their ASD diagnosis will reduce these difficult questions. Below, we’ve compiled several tips to explain autism spectrum disorder to your child: 

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  • Be Positive - Being positive is key to explaining an ASD diagnosis! Remind your child that everyone is special and unique. Every person has their own strengths and weaknesses - and that includes them! 

  • Explain the Basics - Depending on your child’s age, they may have questions about their ASD diagnosis. Start with the basics: ASD means that they may have trouble with speech, facial expressions, or making eye contact. They may also have a strict set of interests or thrive on routine. 

  • Explain the Benefits - Being unique is a beautiful thing. Explain to your child that an ASD diagnosis means that they have a special set of strengths - like attention to detail, being creative, etc. Parents should also explain that ASD isn’t uncommon. There are many children and adults in the world with ASD who are thriving!

 

When speaking to family members about your child’s diagnosis, follow a similar pattern. Explain the basics, emphasize the behaviors associated with ASD, and be positive. Remember that others’ reactions are outside your control - and the only thing that matters is your child’s happiness. 

Resources

1. Autism spectrum disorder. National Institute of Mental Health. Accessed August 16, 2023. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd#part_2279. 

2. Autism spectrum disorder. National Institute of Mental Health. Accessed August 16, 2023. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd#part_2279. 

3. Autism spectrum disorder. National Institute of Mental Health. Accessed August 16, 2023. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd#part_2279. 

4. Gitimoghaddam M, Chichkine N, McArthur L, Sangha SS, Symington V. Applied Behavior Analysis in Children and Youth with Autism Spectrum Disorders: A Scoping Review. Perspect Behav Sci. 2022 May 18;45(3):521-557. doi: 10.1007/s40614-022-00338-x. PMID: 36249174; PMCID: PMC9458805.

5. 1. Diagnostic Criteria - National Autistic Society. Accessed August 18, 2023. https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria. 

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