What Does “On the Spectrum” Mean? Plus, 10 Insights for Raising Kids on the Spectrum

Autism Spectrum Disorder (ASD) is related to atypical brain functioning, impacting four main areas of skill development: 

  • social interaction difficulties,
  • cognitive impairments,
  • communication difficulties and 
  • restrictive and repetitive behaviors. 

Since autism is a SPECTRUM disorder, the range of difficulties in each area affects each person differently, ranging from very mild to severe. Mild symptoms may require some accommodations and support while severe symptoms may require moderate to very substantial support. The variety of symptom severity is why ASD is considered a spectrum disorder.  

When did the name of this diagnosis change?  

In 2013, the American Psychiatric Association updated the diagnostic and statistical manual (DSM-5), making changes to the diagnosis of ASD. Previously, three categories were listed: 

  • Asperger’s syndrome, 
  • Pervasive developmental disorder and 
  • Childhood disintegrative disorder.

In 2013, the categories listed above were consolidated representing a single continuum under one label autism spectrum disorder (ASD.) This single continuum diagnosis includes social communication difficulties and restrictive and repetitive patterns and interests. Symptoms in each category vary widely and are evaluated for each individual from mild to severe. 

Are there more boys or girls with this diagnosis?

Boys are four times more likely to be diagnosed on the autistic spectrum than girls. One theory about why there exists a significant difference between boys and girls suggests a gender bias evaluation. This is because the initial criteria for diagnosing Autism was observed using only boys. As a result, rigid behavior patterns and social difficulties that girls present on the spectrum are often missed, simply because their presenting behaviors are different from boys. 

Girls tend to mask and compensate more effectively for social skill challenges than boys do. As a result, many girls are misdiagnosed, undiagnosed, or diagnosed later in life, resulting in a lack of support and additional problems. 

What are early signs that a child may be on the Autistic Spectrum? 

Some children develop ‘typically’ until the age of two, but then suddenly plateau, seemingly unable to gain additional social or language skills. Others regress and seem to lose already acquired language and social skills. If your child’s skills seem to plateau or regress, consult your child’s pediatrician. Observe your child and let your pediatrician know if you notice your child exhibiting the characteristics listed below.  

  1. not responding to their name
  2. appearing as if they are hearing impaired
  3. not engaging in “playing pretend” games, 
  4. getting upset by minor changes or transitions, 
  5. avoiding touch, 
  6. obsessing on or playing with the same toys over and over, 
  7. stimming (flapping hands/arms, rocking, spinning), 
  8. not understanding facial expressions
  9. (hyper) overreacting to light, sounds, smells or touch,
  10. (hypo) under-reacting to sound or pain or 
  11. not saying any words, 
  12. producing sounds and noises
  13. avoiding eye contact, 
  14. not sharing joint attention, 
  15. wanting to be alone, 
  16. using the pronoun “You” while referring to self,
  17. answering questions with non-related responses, 
  18. echolalia (repeating words or phrases over and over), 
  19. engaging in behaviors that are risking self-harm without awareness of danger. 

Together, you and your pediatrician can monitor your child’s development and seek further evaluation if needed.  

How can I go about getting my child evaluated?  

If you have concerns about your child’s development, seek a professional evaluation. Call your child’s pediatrician, discuss the symptoms you have observed, and request information about obtaining a developmental assessment. Contact your child’s school and request that the special education department evaluate your child. Find out if your school and/or community has an early intervention program (EIP) that can evaluate your child’s development. Early intervention specialists will gather information about your child in a variety of settings and from others who are familiar with your child (teachers, doctors, therapists). They may use an assessment such as the Autism Diagnostic Observation Schedule (ADOS) to gather information about your child’s social interactions. An assessment such as this can identify information about the diagnosis, further evaluation, and next steps regarding school accommodations and skill-building therapy.  

What characteristics are on the Spectrum? 

A wide range of symptoms are possible in individuals diagnosed on the Autism Spectrum. Some individuals can express themselves verbally, while others may be completely non-verbal and not speak at all. Some individuals on the spectrum also have intellectual disabilities and low cognitive functioning, while others test well above average on academic and performance measures. 

Regardless of functioning, most individuals on the spectrum will experience some type of sensory disturbance.  When this occurs, ordinary everyday experiences of light, sound, touch, and smell may seem amplified, causing them to feel overwhelmed. As a result, some individuals on the spectrum may “stim”, a behavior that promotes their ability to manage anxiety. Others may isolate themselves from others or focus on rigid routines to avoid unpredictable stimulation.  

10 Insights for Raising Kids on the Spectrum

  • Know that your child will make progress. You are not alone. Many parents of children diagnosed with Autism have experienced the enormous joys and challenges of ASD. They have watched their child develop, communicate and work through challenges as they share their child’s happiness, joy, and connection with others. 
  • Early therapeutic intervention yields the best benefits. Parents can learn about how therapeutic interventions can foster communication and social skill development. The earlier interventions are in place, the more your child will benefit. Here are a few examples: 
    • Occupational and physical therapy can improve fine and gross motor skills.  
    • Speech and vision therapy can improve language and communication skills.  
    • Music, equine, movement, and a variety of behavioral and cognitive therapies can foster social and functional skills.  
  • Identify, understand and record your child’s sensory triggers. Your child’s sensory system can become overwhelmed. If they are hyper-sensitive, everyday and ordinary experiences of light, sound, touch, taste, and scents may be amplified, causing them to respond with a “meltdown” or “shutdown”, unable to function or communicate basic needs until their sensory system calms. In this state, they cannot communicate hunger, thirst, pain, or if something is frightening. Knowing what their triggers are will help them prepare for, cope with, and/or avoid situations that are overwhelming.  

Create an emergency information sheet that includes the following: 

  • your child’s picture, 
  • doctor contact information, 
  • medications, 
  • sensory triggers, 
  • child’s favorite places 
  • where they may wander and 
  • a description of how your child communicates. 

Whether you call 911 to receive help at your home or at school, emergency sheets can save time if a child is missing or injured. They allow you to immediately provide accurate and up-to-date information to first responders.  

Help your child build communication skills and utilize every method possible to express their thoughts, feelings, ideas, needs, and passions. Regardless if your child is verbal or non-verbal, communication will develop and change as they mature. Foster their ability to communicate and socialize by providing a variety of options such as:

  • pictures, 
  • verbal expressions, 
  • signing
  • writing, drawings, 
  • typing or 
  • other forms of assisted technology. 

Encourage your child to participate in swim lessons, starting at the age of two or three. Children with an autism spectrum disorder are “160 times more likely to die from drowning compared with the general pediatric population.” Many children on the spectrum are attracted to water. Teaching a child about water safety and how to swim can prevent accidents and drowning.  

Develop a working plan so that every one significant in the child’s life is on the same page and working toward the same goals. Significant people may include your spouse, grandparents, caregivers, doctors, teachers, therapists, and other professionals. Ask the professionals who work with your child to provide daily, weekly or monthly progress reports. Update and adjust your child’s working plan, goals, and progress.  Pass this information along to those significant in your child’s life. 

Find a supportive community of parents and professionals who understand Autism Spectrum Conditions. Find a place of like-minded individuals who care, understand, and want to ask and answer questions. This type of support is valuable as your child develops and transitions into the teenage and adult years. 

Become familiar with The Individuals with Disabilities Education Act (IDEA), before your child starts school. IDEA mandates a public education for all eligible children.  It requires schools to provide accommodations and services for children with ASD. Children diagnosed with autism are entitled to early intervention services and special education. Parents are encouraged to be advocates for their child and have full and equal rights to the planning, environment, goals, monitoring, and changes to their child’s educational plan. 

Teach your child that they are capable of succeeding with the right support and accommodations in place. As your child matures, they will begin to recognize their needs, triggers, and what support is needed. They will know when to ask for support and when they can complete a task independently.  They will become confident in themselves. Encourage your child to ask for help or let someone know when they are able to do a task independently. 

Who can I talk with about my child? 

ASD is a condition that affects males and females, regardless of one’s culture, race, gender, education, or socioeconomic class.  This spectrum disorder affects everyone differently and presents with a wide range of symptom severity. And caring for kids on the spectrum has a toll on caregivers and parents. Learn more about taking care of yourself a special needs mom here. And, to schedule a consultation to talk about the specific needs of your child, please contact Dr. Nancy Musarra for help.  Email her at nancy@drnancymusarra.com or call 216-954-5665. 

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