WHAT IS ASD?

Autism, or Autism Spectrum Disorder (ASD), is a developmental condition that affects how a person interacts, communicates, and learns. It’s called a spectrum because its symptoms and severity can vary widely from person to person. No two people with autism are exactly alike.

THE CORE CHARACTERISTICS OF ASD FALLS INTO TWO MAIN AREAS

Social Communication and Interaction

This includes challenges with conversation, making eye contact, understanding social cues, and developing relationships. A person with autism might find it difficult to share interests with others or understand emotions.

Restricted and Repetitive Behaviors

This can involve repetitive movements like rocking or hand-flapping, a strong need for routines and order, intense focus on specific topics or objects, and unusual reactions to sensory input like sounds, lights, or textures.

Early Signs & Diagnosis

Early Signs in Childhood Development

Early signs of autism often appear in the first two years of a child’s life and typically involve differences in social communication and interaction, as well as restricted or repetitive behaviors.

Social & Communication Differences

Look for a child who avoids eye contact, doesn’t respond to their name by 9 months, or has little or no back-and-forth babbling or gestures by 12 months. They might also struggle with sharing interests or understanding social cues.

Behavioral & Sensory Differences

A child with autism may line up toys, have a strong need for routines, or get very upset by minor changes. They might also have unusual reactions to sensory input like sounds, textures, or smells.

It’s important to remember that every child develops differently. The presence of one or two signs doesn’t necessarily mean a child has autism, but it’s a reason to seek a professional opinion.

The Importance of Early Intervention

Early intervention is a process of providing specialized support and therapies to young children with developmental delays or disabilities. The younger a child is when they begin intervention, the more impactful the results can be. This is because the brain is highly adaptable in the first few years of life, a period of rapid development known as neuroplasticity. Early intervention can help a child develop crucial skills in communication, social interaction, and self-regulation, improving their long-term outcomes in school and in life. It also empowers parents by providing them with the tools and strategies to support their child’s development.

Steps to a Formal Diagnosis

A formal diagnosis is made by a team of specialists and is the gateway to accessing a wide range of services and support. The diagnostic process can be broken down into these key steps

Talk to a professional

If you have concerns, the first step is to talk with your child’s pediatrician. They can conduct a developmental screening and may refer you to a specialist.

Specialist Evaluation

A formal evaluation is conducted by a multidisciplinary team that may include a developmental pediatrician, child psychologist, or speech-language pathologist.

Comprehensive Assessment

The evaluation typically includes a detailed developmental history, observation of the child’s behavior, and standardized tests. The specialists may also speak with teachers or other caregivers to get a full picture of the child’s behavior in different settings.

Diagnosis

The diagnostic team uses the criteria in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) to determine if the child meets the criteria for ASD.

THE
SPECTRUM

The “spectrum” in Autism Spectrum Disorder (ASD) refers to the wide range of symptoms, skills, and abilities that people with autism can have. This is why no two individuals with autism are exactly alike. The term helps explain that autism isn’t a single condition but a combination of different traits that can be expressed in countless ways. To help classify these differences and guide the appropriate support, autism is broken down into three different support levels.

Level 1

Requiring
Support

This is the lowest level of support. Individuals at this level have noticeable challenges with social communication, like struggling to initiate conversations or a reduced interest in social interaction. They might also have difficulty adapting to new routines, and their restricted behaviors can interfere with their daily life.

Level 2

Requiring Substantial
Support

At this level, individuals have more significant social communication deficits. They may have limited verbal communication, and their social interactions are often limited to specific interests. Their restricted and repetitive behaviors are more obvious to others and can interfere with their ability to function in various settings.

Level 3

Requiring Very Substantial Support

This is the highest level of support. Individuals have severe deficits in both verbal and nonverbal communication, with very limited initiation of social interactions. They may have extreme difficulty coping with change, and their repetitive behaviors or rituals significantly interfere with all areas of their life.

Therapies & Intervention

Therapies for autism are designed to build skills and reduce behaviors that can interfere with a person’s daily life. Applied Behavior Analysis (ABA) focuses on understanding behavior and teaching new skills through positive reinforcement. Speech therapy improves communication, including verbal, nonverbal, and social language skills. Occupational therapy helps with daily living skills, sensory regulation, and motor skills, making everyday tasks easier to manage.

Navigating the autism community can be overwhelming, but many national and local organizations provide invaluable support. Here is a list of some of the top resources, each with a specific focus on different areas of need.

Our organization equips autism families with vital products and resources to meet their unique needs.

Autism Society

Provides education, advocacy, and a network of affiliates to connect people to resources.

Autism Speaks

Focuses on increasing understanding and acceptance of autism, with a comprehensive resource guide and advocacy efforts.

Autistic Self Advocacy Network (ASAN)

A nonprofit organization run by and for autistic people, dedicated to advancing the rights of the autism community.

Financial & Legal Assistance

The costs associated with therapies and support can be significant. Financial and legal assistance options are available to help families cover these expenses. These resources include government benefits like Medicaid, which can cover therapy and medical costs, as well as grants from foundations and organizations dedicated to autism support. Additionally, legal aid services can help families understand their rights and advocate for their child’s needs within the educational and healthcare systems.

Arizona DES Division of Developmental Disabilities (DDD)

The DDD is a part of the Arizona Department of Economic Security and provides services and support to eligible individuals with developmental disabilities.¹Their website contains information on eligibility, services, and how to apply.

Arizona Long Term Care System (ALTCS)

ALTCS is a program administered by the Arizona Health Care Cost Containment System (AHCCCS) that provides long-term care services for financially and medically eligible Arizona residents who are aged, blind, disabled, or have a developmental disability. The DDD determines eligibility for children and individuals with a developmental disability for this program.

The Arc

Promotes and protects the human rights of people with intellectual and developmental disabilities through policy and advocacy.

Social Security Administration (SSA)

Provides financial assistance through disability programs like Supplemental Security Income (SSI).

National Autism Association

Offers grants and programs, including the “Give A Voice” program for communication devices.

Autism Care Today (ACT Today)

Provides grants to families to help cover the costs of therapies and services.

Educational Support

Navigating the school system requires specific tools to ensure a child with autism receives an appropriate education. A key component is the Individualized Education Program (IEP), a legal document that outlines a child’s specific educational goals and the services they will receive to meet them. Educational support also involves requesting reasonable accommodations in the classroom and working collaboratively with teachers and staff to create a supportive learning environment.

Organization for Autism Research (OAR)

Funds applied research to address the daily challenges faced by the autism community.

Centers for Disease Control and Prevention (CDC)

Provides data, statistics, and educational materials through its “Learn the Signs. Act Early.” program.

Autism Navigator

A web-based program with video resources and online courses on early signs and intervention.

Daily Living Strategies

Creating a predictable and supportive home environment is crucial for managing routines, sensory needs, and communication.

Family & Sibling Support

Supporting the entire family unit is essential for long-term well-being. To help siblings, provide them with age-appropriate information about autism and encourage their involvement in a way that feels natural to them. When navigating social outings, prepare for the event beforehand by showing pictures or videos of the location, have a clear plan for what to do there, and always have an exit strategy if needed. Importantly, prioritize self-care for caregivers; taking time for oneself, whether through a brief walk, a coffee break, or connecting with other parents, is vital for maintaining resilience and patience.

Community Building

Feeling connected to others who understand your experiences can be transformative. Local support groups offer a place to share personal stories and gain advice from families in your area. Online communities, such as the “No Limits Autism Group,” provide a space to connect with parents from a wider network, offering round-the-clock support and a sense of shared community. Participating in events, like autism-friendly gatherings, walks, or educational workshops, provides opportunities to connect with others and reinforce the feeling that you are not alone on this journey.