Understanding Autism Diagnoses

By: Cat Salladin

Historically, autism has been viewed through a pathologizing lens. However, autism is a natural variation in human neurology, encompassing a wide range of traits and characteristics that make each individual unique. Although autism diagnoses are based on generally pathologizing criteria listed in the DSM-5, receiving an autism diagnosis can provide an autistic individual with a better understanding for themselves and help them make accommodations as they move through the world. This article explores the process of getting an autism diagnosis through an affirming lens and discusses some of the benefits of receiving a diagnosis, particularly a late diagnosis, for autistic individuals. 
 

Understanding Autism

Autism is a lifelong neurodevelopmental variation that affects how people perceive the world and interact with others. Autistic individuals often have differences in communication, sensory processing, and social interaction. Because of these differences, autistic individuals have diverse ways of experiencing and engaging with the world. Just like how every individual human is unique, every autistic person experiences being autistic in a way that is individual to them. Receiving a formal autism diagnosis is a privilege that not everyone can afford or acquire due to the many barriers to receiving a formal diagnosis, especially for late-identified autistic adults. Many autistic individuals find that self-identification is beneficial and valid, while others may have the opportunity and desire to pursue a formal diagnosis. 
 

Pursuing an Autism Diagnosis

Seeking an autism diagnosis often begins with recognizing differences in behavior, communication, and sensory experiences. For those who are identified in childhood, it is often parents, teachers, or caregivers who notice differences in the way a child engages with and responds to stimuli. In adulthood, most autistic individuals begin to recognize autistic traits through their own self-awareness and self-reflection, especially if they have engaged in masking or camouflaging behaviors over the course of their lives. Recognizing and understanding these differences is the first step in pursuing an autism diagnosis.
 

Early Identification and Diagnosis

Although autism can be diagnosed at any age, autistic individuals who may present in a more “stereotypical” manner (oftentimes these individuals are caucasian males) may be identified in childhood. Early signs may include:

• Communication Differences: Autistic children might have unique ways of using language, such as delayed speech, echolalia (repeating words or phrases), or a preference for nonverbal communication.

• Social Interaction: Some autistic individuals may find social interactions challenging, preferring solitary play or activities.

• Sensory Sensitivities: Sensory experiences can be more intense or muted for autistic people, leading to sensitivities to light, sound, textures, or smells.

• Repetitive Behaviors: Engaging in repetitive movements or routines can be a source of comfort and stability for autistic individuals. These repetitive behaviors are referred to as “stimming”. 

Recognizing these traits is crucial for seeking further evaluation and support.
 

The Diagnostic Process for Autistic Children

The process of diagnosing autism in childhood typically involves several steps:

1. Initial Screening: Pediatricians or primary care providers often conduct initial screenings during regular check-ups. These screenings can identify early signs and determine if a more comprehensive evaluation is needed.

2. Comprehensive Evaluation: A thorough evaluation is conducted by a multidisciplinary team, which may include psychologists, neurologists, speech-language pathologists, and occupational therapists. This evaluation involves a combination of observations, interviews, and standardized assessments.

3. Diagnostic Criteria: The evaluation team uses established criteria to diagnose autism. These criteria focus on communication differences, social interaction, and repetitive behaviors. It is important to remember that these criteria are tools for understanding and are not an exhaustive list of the individual’s autistic traits.

4. Feedback and Support: After the evaluation, the team provides feedback to the child and their family. This includes discussing strengths, challenges, and recommendations for support and accommodations. It is essential to approach this feedback with empathy and respect for the individual's unique experiences rather than labeling the child as “disordered” and searching for “treatments.” The purpose of an autism diagnosis should not be to treat or eradicate the autistic traits, but rather to support and accommodate the individual child’s needs. 
    

Late Identification and Adult Autism Diagnosis

For many adults who uncover their autistic traits later in life, receiving an autism diagnosis can be a transformative experience. Often, adults seek a diagnosis after many years of feeling different or struggling to fit in without understanding why. Oftentimes, an adult seeking an autism diagnosis already self-identifies as autistic through research and self reflection. For some, self-identification is enough, but for others, a formal diagnosis is preferred or even necessary. 
 

Initial Self-Identification

For autistic adults, the path to diagnosis often begins with self-identification. Adults may start to notice patterns in their behavior, communication, or sensory experiences that align with descriptions of autism. Many autistic adults who are late-diagnosed have learned to mask their autistic traits in order to fit in with neurotypical society. However, because masking is very taxing to the nervous system, some adults may begin to experience autistic burnout and skill regression, making their autistic traits more prominent and difficult to mask. For many adults, hitting a burnout is what prompts research into autism, as mental health professionals who are not educated in autism may mistake autistic burnout for depression or other mental illnesses. Upon self-reflection, autistic adults may begin to recognize sensory sensitivities, communication challenges, special interests, and other autistic traits that they’ve had since childhood. Recognizing these traits can lead to further exploration and a decision to pursue a formal diagnosis.
 

Research and Preparation

Once an individual suspects they might be autistic, the next step involves research and preparation. This stage is helpful in understanding what to expect during the diagnostic process and finding the right professionals to consult. Autistic individuals may begin by reading books about autism, listening to podcasts that share late-diagnosed autistic adults’ experiences, finding online resources, and more. This research aids in self-reflection and provides validation for the autistic adult in a way that many have not experienced before. Additionally, this research can help the individual find affirming professionals for diagnosis. This might include psychologists, psychiatrists, neurologists, or other mental health professionals with experience in neurodiversity. 
 

Seeking Professional Help

The next step is to seek professional help. This involves making appointments with healthcare providers who can conduct a comprehensive evaluation. The process typically includes:

1. Initial Consultation: The first meeting with a healthcare provider usually involves a discussion about why the individual is seeking a diagnosis. The provider will ask about the individual's history, current challenges, and reasons for suspecting autism.

2. Comprehensive Evaluation: If the initial consultation suggests that further assessment is warranted, a comprehensive evaluation is conducted. This often includes:

   • Interviews: Detailed interviews with the individual and, if possible, with family members or close friends who can provide additional perspectives.

   • Questionnaires and Surveys: Standardized questionnaires and self-assessment tools that help identify traits and behaviors associated with autism.

   • Observations: Direct observations of the individual's behavior and interactions in various settings.

   • Medical and Psychological History: A thorough review of the individual's medical and psychological history, including any previous diagnoses or treatments.

3. Diagnostic Criteria: The healthcare provider will use established diagnostic criteria to determine whether the individual meets the criteria for an autism diagnosis.

For more information, visit this step-by-step guide for how to get an autism diagnosis.
 

Receiving the Diagnosis

Once the evaluation is complete, the healthcare provider will discuss the findings with the individual. This feedback session is an opportunity to:

• Understand the Diagnosis: The provider will explain how the individual's experiences and behaviors align with the criteria for autism. This explanation can provide clarity and validation.

• Discuss Strengths and Challenges: The provider will highlight the individual's strengths and abilities, as well as any challenges they may face. This balanced perspective is essential for developing a comprehensive understanding of the individual and creating a plan for accommodations. 

• Explore Next Steps: The provider will discuss recommendations for support and interventions, which can include therapy, educational resources, workplace accommodations, post-diagnosis coaching, and community support.
   

Post-Diagnosis Support

Receiving an autism diagnosis is often just the beginning of a process of greater self-understanding and support. Post-diagnosis, individuals can benefit from various resources and strategies, including:

1. Therapeutic Support: Engaging in therapy with professionals who have experience with autism, especially those who are autistic themselves, can provide valuable support. This might include neuroaffirming therapy, occupational therapy, speech therapy, and more, depending on the individual's needs.

2. Educational Resources: Accessing books, courses, and online resources about autism can bolster the individual's understanding and provide practical strategies for navigating daily life.

3. Community and Connection: Connecting with other autistic individuals through support groups, online forums, and local organizations can provide emotional support and a sense of belonging. For many autistic adults who have felt alone and different their whole lives, meeting other people with similar neurotypes can be eye-opening and refreshing. 

4. Self-Compassion: Knowing that their differences are due to being autistic and not due to a personal shortcoming or failure can foster greater self-compassion and reduce self-blame. Many autistic adults who are identified later in life have extreme feelings of shame and low self-esteem due to a lifetime of feeling othered or broken. An autism diagnosis can give autistic adults the validation and explanation they need to begin to unlearn the shame that is often very deeply ingrained. 

5. Access to Accommodations: With a formal autism diagnosis, adults can access specific supports and accommodations in the workplace, educational settings, and healthcare. This can include therapy, coaching, or support groups tailored to their needs. While not all workplaces are accommodating, having a formal autism diagnosis makes it more likely for an employer to accommodate an autistic individual’s needs under the ADA. 
    

The Role of Loved Ones

Families, caregivers, and other loved ones play a crucial role in the lives of autistic individuals. Receiving a diagnosis, especially later in life, can create an identity crisis of sorts for the autistic individual. Having the support of family, caregivers, or other loved ones is beneficial not just to the autistic individual themselves, but in their relationships with them. Their support, understanding, and advocacy can make a significant difference. Following an autism diagnosis, the loved ones of the autistic individual can benefit from: 

• Educating Themselves: Learning about autism from a neurodiversity-affirming perspective to better understand and support their loved ones.

• Providing Emotional Support: Offering unconditional love and acceptance, and validating the experiences of autistic individuals.

• Accessing Resources: Seeking out resources, support groups, and services that can provide additional support and guidance.

• Advocating for Inclusion: Promoting inclusive practices in schools, workplaces, and communities to ensure that autistic individuals have equal opportunities.
   

Creating Accommodations

Following an autism diagnosis, individuals can benefit from creating accommodations and finding ways to support their unique needs. Creating environments that accommodate autistic individuals involves:

• Sensory-Friendly Spaces: Especially within the home, autistic individuals can experiment with different sensory tools such as weighted blankets, headphones, ear plugs, stim toys, and more. Finding which sensory accommodations work best for the autistic individual is useful for creating a more sensory-friendly experience in a world that is often overstimulating. 

• Flexible Communication: Adapting communication methods to meet the needs of the autistic individual, including the use of visual aids, sign language, or alternative communication devices is helpful, especially when the autistic individual is struggling with verbal communication due to overstimulation or dysregulation. 

• Supporting Employment: Asking for accommodations in the workplace can be intimidating for autistic individuals, especially since discrimination and misunderstanding are common experiences. Writing out the specific needs of the individual and advocating for accommodations through written communication can be helpful.
   

The Power of Community and Connection

Post-diagnosis, autistic individuals need support, understanding, and community. Creating a sense of connection, especially with other autistic or neurodivergent individuals, is helpful for a newly diagnosed person. Being part of a supportive community can provide:

• Emotional Support: Connecting with others who understand and share similar experiences can provide comfort and validation.

• Shared Resources: Access to shared resources, information, and support networks.

• Opportunities for Advocacy: Collective advocacy efforts can drive positive change and promote inclusivity.
   

Conclusion

Understanding the process of autism diagnosis is important for anyone who suspects they, themselves, may be autistic, or who loves someone who may be autistic. Whether diagnosed in childhood or later in life, an autism diagnosis can provide clarity, support, and empowerment. It can create an experience of self-discovery and acceptance, leading to greater self-understanding and the ability to advocate for one's needs. Autism diagnosis is only one step in an autistic individual’s journey towards identity and accommodation. By understanding neurodiversity, providing meaningful support, and promoting inclusivity, we can ensure that autistic individuals have the opportunity to thrive.