A Parent's Guide to Autism Spectrum Disorder - Achieve Beyond

A Parent’s Guide to Autism Spectrum Disorder

By: Melanie Bren, M.Ed, BCBA, LBA

If your child has recently been diagnosed with autism spectrum disorder (ASD), there are likely many emotions you’re feeling and scenarios running through your mind. However, it can provide clarity and result in a starting point for navigating the next steps in your child’s life. Like many major life events, learning your child has autism will affect everyone in your family; even your network of friends. I

t’s no surprise that you will go through many new positive and challenging experiences, face many emotions and be forced to make many hard decisions. Caregivers often feel relief or comfort when their child is officially diagnosed as it solidifies and validates suspicions they’ve had, but also brings an overwhelming amount of stress and thoughts of “what do I do next?”

What is Autism Spectrum Disorder? A Guide

Autism spectrum disorder (ASD), or autism, is a developmental disability that refers to a broad range of characteristics that are categorized into two groups: deficits in social communication and restrictive/repetitive behaviors. Each of these categories outline a broad range (spectrum) of potential symptoms that one may display. Additionally, there are varying strengths and challenges an individual with autism faces and they are typically diagnosed with a severity level (level 1-3). According to the CDC, “People with ASD often have problems with social, emotional, and communication skills.

They might repeat certain behaviors and might not want change in their daily activities. Many people with ASD also have different ways of learning, paying attention, or reacting to things. Signs of ASD begin during early childhood and typically last throughout a person’s life.” Autism affects an estimated 1 in 54 children in the United States, which is twice as great as the 2004 rate of 1 in 26 (CDC, 2021). Autism is about four times more common among boys than girls, however, it occurs in all racial, ethnic and socioeconomic groups. Learn more about autism red flags here.

Find Support 

Every family member will process your child’s diagnosis differently, but maintaining relationships with your family, friends and community will be invaluable to you in your child’s new journey. Maintain open lines of communication with those you trust as there may come a time when you need to lean on others for support.

Whether it’s you and your spouse, partner, significant other or you’re the sole provider, talk openly about obstacles as they occur, work together to find a solution, share responsibilities, ask for help when you need it and identify when is most important to you, your child and your child’s caregivers. The you more you can communicate in challenging times, the stronger foundation you can build for your child’s success.

How to Talk to Others About Your Child’s Diagnosis

As previously mentioned, everyone is going to process this new differently. One thing that can be challenging is telling your parents or extended family. In reality, people are aware of Autism and society is becoming increasingly more inclusive and transparent, but there is still a lot of misinformation surrounding Autism and how it manifests in people. The problems your child may be facing may not be visible to everyone in your family making it increasingly difficult for them to understand. Try focusing on specific behaviors when helping your family understand the diagnosis.

This can be things like lack of eye contact, frequent meltdowns or inability to connect with other kids can be easier for people to conceptualize and “picture.” Additionally, avoid overwhelming your family with a lot of information at once. Use basic terms when answering common questions or explaining the diagnosis. For example, you can say, “my child has difficulty with social skills,” “it is lifelong,” “every person with autism is different,” “by having a diagnosis, my child is eligible for therapies and services which can be life-changing,” “Autism is a neurodevelopmental disability,” etc.

Common Behaviors in Children with Autism

There are a few common behaviors that people with Autism display. This is not to say that all people with Autism display all of the same behaviors, as Autism is diagnosis along a spectrum. However, some broad challenges that people face include: rigidity in schedule, difficulty with transitions, repetitive movements, sensitivity to certain sensory inputs and highly specific interests.

Repetitive Movements

Repetitive movements associated with autism are sometimes called stimming. The word stim is short for self-stimulation. It means repetitive movements that don’t appear to be purposeful, including hand flapping, rocking, blinking, pacing and repeating noises or words.

Rigidity in Schedule and Transitions

Transitions are particularly challenging for kids with autism, and their reactions can be extreme. They may feel the need for sameness and routine is a way of adapting to a world that can be overwhelming and confusing. Deviation from the routine can feel very uncomfortable, even distressing, and they may refuse to transition, or engage in disruptive behavior such as having a tantrum.

Maintaining structured routines may help children with autism, especially for everyday transitions that are challenging, like bedtime or school mornings. It may also be helpful to provide children visual schedules of their routines as well as provide warnings (countdowns to the next activity) before upcoming transitions. It’s important to note that these general strategies, while helpful, may not be sufficient for all children with autism.

Rewarding kids when they handle a transition particularly well can also be an effective strategy. A reward could be as simple as labeled praise (for example, saying, “I really like how you stopped playing on the iPad when I told you it was time to get dressed. Good job!” Children can also be motivated by rewards like stickers or points that work up to bigger rewards, like more screen time or a favorite food. Access to a child’s special interests can also be a reward.

Sensory Sensitivity

Challenges with certain sensory inputs are typically noticeable in toddler years. Caregivers usually notice their child has an aversion to light, noise, or certain types of fabric (ex: tag on clothing). These and other atypical behaviors may reflect sensory issues — difficulty integrating information from the senses. Sensory problems are now considered a symptom of autism because the majority of children and adults on the spectrum also have sensory issues.

Treatments for Autism Spectrum Disorder

Currently, Applied Behavior Analysis (ABA) is the only evidence-based treatment for ASD. ABA typically includes skill acquisition goals with an emphasis on functional communication training, parent training sessions and behavior intervention plans for maladaptive behaviors.

Many children with ASD receive occupational therapy (OT), physical therapy (PT) and speech therapy to supplement ABA. Additionally, children with ASD can have co-occurring medical conditions that need to be addressed with a medical professional.

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