The Path to Autism Diagnosis: What Every Parent Should Know
Receiving a diagnosis of autism for your child can be a profound moment filled with mixed emotions—relief at having an answer, apprehension about the future, and the desire for information. The process leading to the diagnosis itself can be overwhelming and, at times, confusing. This post will walk you through the autism diagnosis process, highlighting the professionals involved, the tests performed, and what you can expect at each step.
1. Observing Early Signs
Autism, or Autism Spectrum Disorder (ASD), is a neurodevelopmental condition that affects how individuals perceive the world and interact with others. While every individual on the spectrum is unique, certain signs and characteristics are commonly observed, especially in early childhood. Recognizing these early signs can be pivotal in seeking timely interventions that can make a significant difference in a child’s life.
a. Delayed Speech or Non-Verbal Communication:
While it's common for children to develop at their own pace, a notable delay in reaching speech milestones might be an early indicator of ASD. By the age of two, most children can form phrases, but children with autism might have limited words or might not speak at all. Beyond speech, they might also struggle with non-verbal communication cues, such as using hand gestures, facial expressions, or pointing.
b. Challenges with Eye Contact and Social Interactions:
For many children with autism, the social world can be confusing. They might avoid making eye contact, which is one of the fundamental building blocks of human connection. This avoidance can sometimes be mistaken for shyness. Additionally, they might have difficulty engaging in reciprocal play with peers, preferring solitary activities or struggling to understand the unwritten rules of social engagement.
c. Difficulty Understanding Emotions:
Understanding and interpreting emotions, whether their own or those of others, can be challenging for children with ASD. They might find it hard to recognize facial expressions or body language. In situations where neurotypical children might easily perceive anger, sadness, or joy, a child with autism might struggle, leading to misunderstandings or feelings of frustration.
d. Repetitive Behaviors or Intense Interests:
Children with ASD often display repetitive behaviors, which can include hand-flapping, rocking back and forth, or being overly fascinated with lights or moving objects. Additionally, they might develop deep, intense interests in specific subjects or activities. For instance, a child might become an expert on train schedules, dinosaur facts, or a particular genre of music, often to the exclusion of other interests.
e. Sensory Sensitivities:
Not always discussed as an early sign, but crucial to mention, is the fact that many children with autism are highly sensitive to their environments. They might be hypersensitive (over-responsive) or hyposensitive (under-responsive) to sensory stimuli. This can manifest as being bothered by the tags in clothing, finding certain sounds intolerably loud, seeking out specific textures, or not noticing pain from cuts or bruises.
2. Preliminary Screening
Before diving deep into the diagnostic process, a preliminary screening is conducted. A popular screening instrument is the Modified Checklist for Autism in Toddlers (M-CHAT), designed for kids aged 16 to 30 months. Through a series of questions, it gauges a child's behavior in areas like play, communication, and social interaction. If results from the M-CHAT raise flags, it simply points toward the need for a more comprehensive assessment.
While screenings can take place at various intervals, the 18 and 24-month check-ups are particularly significant. This is because many behaviors associated with autism become more pronounced or recognizable around these ages. By routinely employing tools like the M-CHAT during these visits, doctors can ensure that children showing potential signs of ASD are identified and guided toward the resources and evaluations they may need.
3. Choosing the Right Professionals
The autism diagnosis process involves a team of specialists. These may include:
Developmental Pediatricians: Doctors who specialize in child development and children's diseases.
Pediatric Neurologists: Experts in brain, spine, and nervous system disorders in children.
Child Psychologists or Psychiatrists: Professionals who understand the mental and emotional aspects of childhood disorders.
Speech and Language Pathologists: Experts in communication challenges.
4. Comprehensive Diagnostic Evaluation
After preliminary screening, the next step is a thorough evaluation. This evaluation typically includes:
Observation of the child: This involves watching the child play, interact, and communicate.
Developmental history interview: Professionals will ask detailed questions about the child's development, behavior, and daily activities.
Standardized tests: These are structured tests used to assess specific areas of concern, like the Autism Diagnostic Observation Schedule (ADOS).
Here are some commonly used tests and tools in the diagnosis of ASD:
Autism Diagnostic Observation Schedule (ADOS): ADOS is a standardized diagnostic tool for ASD. It consists of a series of structured and semi-structured tasks that the evaluator and child engage in together. The evaluator observes and scores the child's behavior during these tasks, looking for signs consistent with autism.
Autism Diagnostic Interview-Revised (ADI-R): The ADI-R is a comprehensive parent interview that provides a thorough assessment of individuals suspected of having autism or other pervasive developmental disorders. This interview covers the individual's full developmental history, capturing early-onset symptoms and current behaviors.
Childhood Autism Rating Scale (CARS): CARS is a behavior rating scale that helps to identify children with autism and to distinguish them from developmentally handicapped children without the autism syndrome. It's often used in research settings.
Gilliam Autism Rating Scale (GARS): This scale assists teachers, parents, and clinicians in identifying and diagnosing autism in individuals ages 3 through 22. It also helps estimate the severity of the child's disorder.
Modified Checklist for Autism in Toddlers (M-CHAT): The M-CHAT is a screening tool used to identify children between 16 and 30 months of age who should receive a more detailed assessment for potential autism or developmental delays.
Social Communication Questionnaire (SCQ): Formerly known as the Autism Screening Questionnaire, the SCQ is a parent-report screening questionnaire that helps evaluate communication skills and social functioning in children who might have ASD.
Social Responsiveness Scale (SRS): This is a questionnaire that measures the severity of autism spectrum symptoms in children. It looks at social awareness, social cognition, social communication, social motivation, and restrictive interests and repetitive behavior.
Vineland Adaptive Behavior Scales (VABS): While not exclusively for ASD diagnosis, VABS assesses personal and social skills of individuals from birth through adulthood. For autism diagnosis, it can provide valuable information about a child's adaptive functioning in comparison to their cognitive abilities.
Pervasive Developmental Disorders Behavior Inventory (PDDBI): This inventory is designed to assess both the maladaptive and adaptive behaviors of children with pervasive developmental disorders.
It's crucial to understand that no single test can diagnose autism. The process typically involves a combination of clinical observations, standardized tests, and input from parents or caregivers. The evaluations are done to build a holistic understanding of the child's behaviors and skills. Furthermore, these tools can vary in their applicability based on the age of the individual and other factors.
5. Receiving the Diagnosis
Once the evaluations are complete, the team will meet to discuss their findings. If the child is diagnosed with autism, it will typically be categorized into one of three levels:
Level 1 (Requiring Support):
Characteristics: Children at this level can often blend in with their peers during brief interactions. However, upon closer observation or in prolonged social situations, their challenges become apparent. They may struggle with understanding social nuances, taking turns in conversation, or adapting to unexpected changes.
Impact: These children might find unstructured social scenarios, like recess or group activities, challenging. They may also have specific intense interests or have difficulty initiating and sustaining friendships.
Support Needs: With the right interventions, such as social skills training or structured environments, many of these children can function independently in various settings.
Level 2 (Requiring Substantial Support):
Characteristics: Children at this level have more noticeable difficulties with verbal and non-verbal communication. They may speak in short, simple sentences, struggle to adjust their behavior to different social contexts, or display obvious communication impairments.
Impact: Their challenges can lead to decreased engagement in social interactions and difficulty adapting to new situations or environments. They might have a narrow range of interests and activities.
Support Needs: These children often benefit from consistent therapeutic support, including speech therapy, occupational therapy, and specialized education plans, to enhance their communication and adaptive skills.
Level 3 (Requiring Very Substantial Support):
Characteristics: This level encompasses children with severe challenges in both verbal and non-verbal communication. They might have extremely limited speech or might not speak at all. Repetitive behaviors, intense reactions to sensory stimuli, or difficulties with change are common.
Impact: Their behaviors can significantly impair their daily functioning. This might manifest as minimal response to social overtures from others or extreme distress in changing environments.
Support Needs: Intensive, individualized interventions are vital. This might include one-on-one therapy, specialized education settings, and consistent daily routines. The involvement of multiple professionals, such as speech therapists, occupational therapists, and behavioral therapists, is often required.
6. Post-Diagnosis Support
The diagnostic process doesn’t end at receiving the diagnosis. Once diagnosed, a comprehensive support plan is developed, including therapies, interventions, and educational programs tailored to the child’s unique needs.
Conclusion
The autism diagnosis process is a collaborative effort involving multiple professionals and evaluations. While it may seem daunting, it's crucial to remember that this process aims to provide clarity and guidance. With a proper diagnosis in hand, families can better understand their child’s needs and access the necessary resources and interventions.
Receiving an autism diagnosis can be challenging, but it is also the first step towards providing the best support and care for your child. Ascent Autism is committed to being with you on this journey, ensuring you have the guidance and resources needed. Remember, you're not alone; there are numerous communities, resources, and professionals—including the dedicated team at Ascent Autism—ready to assist and guide you every step of the way.
Oct 21, 2023Hye Ryeon Lee, PhDHye Ryeon is a neuroscientist with over 10 years of experience studying Autism Spectrum Disorder, including at the Stanford University School of Medicine. She has published numerous papers on the mechanisms of autism in journals such as Nature, Science, and Nature Neuroscience.https://www.linkedin.com/in/hyeryeonlee/