Getting an Autism Diagnosis: An Essential Guide to Understanding the Process

Many families find themselves questioning whether their child may have autism. Understanding the signs and getting a proper diagnosis can feel overwhelming. The prevalence of autism in the United States is significant, with recent statistics showing that approximately 1 in 36 children is affected. Navigating the process of evaluation and diagnosis is crucial, yet often complicated.

Experts provide guidance for parents as they embark on this important journey. Knowing the steps to take and whom to consult can make the experience smoother, especially for those who may not be familiar with the resources available. With the right information and support, families can better manage this process and advocate for their child's needs.

Key Takeaways

• Recognizing signs of autism is the first step towards evaluation.
• Early intervention services can provide necessary support for children.
• Understanding the evaluation process helps set clear expectations for families.

What are the signs of autism?

A young child with autism may show various signs, including:

• Lack of response to their name
• Delayed speech or atypical speech patterns
• Preference for solitary play without engaging others
• Intense reactions to sensory input such as sound, touch, or light
• Distress over minor changes, like taking a different route to a familiar place
• Repetitive behaviors, such as rocking, hand-flapping, or spinning

Parents looking for guidance on developmental milestones can benefit from resources like the "Learn the Signs, Act Early" program from the CDC. This initiative offers valuable information on developmental screenings and advice on discussing concerns with pediatricians.

What Should You Do If You Suspect Autism?

When there are concerns about a child possibly having autism, the first step is to discuss these worries with a pediatrician. Many pediatricians routinely check for signs of autism during visits at 18 and 24 months of age. If a concern arises, the pediatrician may suggest further evaluation by a specialist.

A pediatrician can sometimes make an initial clinical diagnosis. Specialists who diagnose autism include:

• Child psychologists
• Psychiatrists
• Developmental and behavioral pediatricians
• Child neurologists
• Autism and developmental condition clinics

It's important to note that most children receive an autism diagnosis around their fourth birthday, although some can be identified as early as age two.

Families seeking evaluations may face long wait times for appointments, which can range from weeks to over a year. This delay can be due to various factors such as location and insurance coverage. It is vital for parents to be aware of these challenges and to advocate for their child's needs during the evaluation process. Being proactive and persistent may help in securing timely assessments and support for the child.

What should you do while you’re waiting for an autism evaluation?

While waiting for an autism evaluation, parents should take proactive steps to support their child. First, they may reach out to their local early intervention program for a free assessment of their child's development.

• Try to Schedule Another Evaluation: Many agencies across the country assess children's functioning to check for developmental delays. You may be able to see someone sooner.
• Access Therapies: If delays are found, they can offer necessary therapies to assist the child.
• Focus on Needs: Parents should prioritize the child's specific difficulties rather than getting caught up in labels.

This approach helps ensure that children receive the support they need to develop their skills effectively.

Whom should you call for early intervention services?

Identifying the proper contact for early intervention services is crucial, and it often depends on the child's age.

• Under Age 3: Families should look for an early intervention program specific to their state or U.S. territory. The provided services may include:

  • Speech therapy
  • Occupational therapy for skill development
  • Physical therapy for mobility issues
  • Playgroups to enhance social skills
    These services may be available at little or no cost, influenced by local regulations.

• Ages 3 to 5: Parents are advised to reach out to local public elementary schools, even if the child is not enrolled there. A simple statement expressing concerns about development and a request for an evaluation for preschool special education services will initiate the process.

• Kindergarten to 12th Grade: For school-aged children, contacting their public school directly to request an evaluation is recommended.

It's important to note that early intervention and school authorities are bound by specific timelines to perform evaluations per U.S. special education laws. If a developmental delay or disability is identified, the child is entitled to free special education and therapy services.

What Should You Expect from an Autism Evaluation?

An autism evaluation can vary based on the professional conducting it, whether it's a doctor, psychologist, or a specialized autism clinic. In some settings, such as at Kennedy Krieger’s autism clinic, the process might take a significant portion of the day as a team of experts collaborate to assess the child.

During the evaluation, healthcare providers typically utilize diagnostic tools. This often includes observing the child and engaging in interactive activities. Furthermore, parents or caregivers may be asked detailed questions about the child's behaviors, skills, and developmental background.

Psychologists may employ standardized tests to evaluate cognitive abilities, learning capacity, memory, and attention span. The results can provide valuable insights into the child’s strengths and challenges.

Obtaining an autism diagnosis is crucial for accessing tailored therapies. For instance, without a formal diagnosis, a child may be unable to begin recommended interventions like behavioral therapy, which have proven to be effective for those with autism.

Educational institutions can also diagnose autism, identifying it as a condition that impacts learning. However, they may initially categorize the child under "developmental delay" until they reach elementary school, unless a healthcare provider has already confirmed an autism diagnosis.

Challenges Families Encounter in Securing an Autism Diagnosis

Families often encounter various obstacles when seeking an autism diagnosis. Many are not well-informed about autism, making it harder for them to recognize signs. During a quick visit, a doctor might overlook important symptoms, preventing timely intervention. In some areas, the lack of specialized autism professionals limits access to necessary evaluations.

Additionally, some families express frustration with their pediatricians, who may dismiss parents' concerns or adopt a "wait and see" approach. This can leave parents feeling unsupported and unsure of their next steps.

It is crucial for parents to trust their instincts. If they suspect developmental issues, seeking expert assistance is important, whether through their pediatrician or available state early intervention services. Parents can often engage with early intervention and special education programs without needing a formal referral.

Even when faced with skepticism from their doctors, families should feel empowered to request additional evaluations or referrals for further testing.

Do Some Families Encounter Greater Obstacles in Obtaining an Autism Diagnosis?

Certain groups of children face more challenges in receiving timely autism diagnoses. Studies show that Black and Hispanic children are, historically, diagnosed less frequently and at older ages compared to their white peers. This disparity exists even though autism impacts individuals across all racial and ethnic backgrounds.

Recent investigations involving 400 families of Black, African American, and multiracial backgrounds revealed that nearly one-third experienced significant barriers related to their race and ethnicity during the diagnostic process. Feedback from parents indicated that some professionals may have dismissed their concerns or utilized assessment tools that lacked cultural relevance. One parent emphasized the importance of belief in their insights, stating, “Start believing us.” Another highlighted the common stereotypes faced, affirming, “We know our kids despite what society says about Black parents not caring as much.”

To address these concerns, researchers aim to utilize insights gained from these experiences to create improved diagnostic methods for Black and multiracial children. The emphasis is on developing “more accurate and culturally sensitive screening approaches.”

Critics note that existing diagnostic tools were primarily developed using data from predominantly white populations. As a result, these tools may not be equally effective for children from diverse racial and ethnic backgrounds. One proposed solution is enhancing representation in autism research by including more underrepresented children. Organizations like SPARK are working toward diversifying research participants to provide a comprehensive understanding of autism across different communities.

Recruiting diverse groups for research is crucial for achieving a more accurate and nuanced understanding of autism. This effort can help improve the diagnostic process and outcomes for children from all backgrounds.

Resources

Useful Materials

• Watch a webinar titled “The Autism Evaluation: Expectations, Benefits, and Barriers” presented by Dr. Garland Jones, a neuropsychologist at the Center for Autism and Related Disorders at Kennedy Krieger Institute.

• Download the CDC’s app to track developmental milestones and stay informed on childhood development.

• Access the Parent Center Hub to discover local training sessions and resources for families raising children with developmental challenges.

• View a SPARK video that focuses on how to create effective Individual Education Plans.

• Explore SPARK's articles for insights on autism diagnoses, advocating for children with autism in school settings, and autism advocacy tailored for families of color.

References

• Hyman, S.L., et al. Pediatrics 145, e20193447 (2020) PubMed
• U.S. Interagency Autism Coordinating Committee. NIH Publication No. 19-MH-8012 (2019) Report
• Weitlauf, A.S., et al. J. Autism Dev. Disord Epub ahead of print (2023) PubMed
• Centers for Disease Control and Prevention, Website. Accessed Feb. 2, 2023

Frequently Asked Questions

How can a young adult be evaluated for autism?

Assessing a teenager for signs of autism usually involves a process similar to adult evaluations. This may start with a screening tool to gauge potential symptoms. From there, more detailed assessments are carried out, which might include structured interviews and standardized tests. Input from parents, teachers, and peers is often valuable in understanding the teenager's behavior and social interactions.

What should be done to obtain an autism diagnosis for a child?

To receive an autism diagnosis for a child, parents should first consult with a healthcare provider if they notice developmental concerns. The diagnostic process may involve gathering detailed information about the child's development, behavior, and family history. Following that, professionals will typically conduct assessments using standardized tools to determine if the child meets the autism diagnostic criteria.

Why would someone pursue an autism diagnosis later in life?

Individuals may seek an autism diagnosis in adulthood for various reasons. They might have experienced ongoing difficulties in social situations, work environments, or personal relationships that led them to consider autism as a possible explanation. A formal diagnosis can provide clarity, access to resources, and support, helping individuals better understand their experiences and navigate their daily lives.