The Diagnosis Journey: A Guide for Seeking an Autism Assessment

About the Author

Ilia Walsh is the director of Individual and Family Services at AANE and the creator of the Autism In Real Life Podcast. Ilia is a mom of two young adults, one of which is Autistic. She has over 25 years of experience with families, children, and adults through training, education, and support. Ilia is also a registered yoga teacher and also enjoys painting, dancing, and traveling.

For individuals and caregivers seeking information about autism and the potential for a diagnosis, the process can take several paths. Whether you are an adult considering self-diagnosis or seeking a professional evaluation, or someone wondering about the diagnostic options for a loved one, understanding the resources available to you and what your goals are will help you choose the best way forward. Below, we provide detailed insights and actionable steps to help guide you through this important decision.

Barriers to Receiving an Autism Diagnosis

First, let’s look at some of the challenges. For some, significant barriers still exist when seeking a formal diagnosis. Individuals may find themselves waiting months to years for a diagnostic assessment, and the associated costs and lack of transparency can make the whole process inaccessible for some. Many professionals who conduct evaluations lack training in neurodiversity-affirming care, rely on outdated information, or may use diagnostic tools that are not age-appropriate and do not adequately consider the diversity of experience. Diagnostic assessments are often particularly inadequate in diagnosing autism in people of color, women, and trans and gender-diverse individuals, often due to implicit biases. Each year, the CDC publishes data that outlines observed diagnostic differences across race, ethnicity, and gender, highlighting these inequities.

Cultural backgrounds, family attitudes, and lack of access to information about autism and its signs can create additional challenges to getting an accurate diagnosis. Sometimes individuals can present with ADHD, OCD, PTSD, anxiety, or depression, as well. These conditions can overshadow Autistic traits and lead to the wrong or an incomplete diagnosis. In addition, some individuals have consciously or subconsciously learned to hide their Autistic traits, also known as masking, to feel safer or more accepted, which can make it difficult for professionals to identify these traits during evaluations.

Exploring Self-Diagnosis

For many individuals, the journey begins with self-diagnosis. Many within our community report that self-diagnosis through research or taking an online questionnaire was one of their first steps toward understanding themselves better. Individuals explore the characteristics of autism, evaluate their experiences, and recognize Autistic traits within themselves. Self-assessment can be a valuable first step, particularly if you or your loved one feel confident in self-reflection and are eager to learn more about autism. There is some research that shows that beyond being self-affirming, online assessments and self-diagnosis can be accurately indicative of autism. One useful resource is a free online screener available at Embrace Autism. This tool can help identify whether the experiences align with common Autistic traits.

While AANE recognizes and honors the value of self-diagnosis, and you do not need a formal diagnosis to participate in any AANE program or service, it is important to note that many public and private programs, services, and government agencies do require a formal evaluation to be eligible for their services. In such cases, self-diagnosis or an online questionnaire cannot be substituted.

Pursuing a Professional Autism Assessment

If you or your loved one prefers to have a formal evaluation or needs one to obtain services that require it, it is necessary to pursue a professional diagnosis. This option not only can provide validation, but also opens up opportunities for accessing benefits like Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). In the United States, a variety of medical professionals can diagnose autism in adults and children. While specific medical professionals are qualified to provide a diagnosis, other practitioners, such as speech therapists, occupational therapists, and social workers, may also administer assessments and contribute valuable insights into an individual’s needs and a medical diagnosis. Here is a list of types of diagnosticians:

• Psychologists: Psychologists, including neuropsychologists, are trained professionals who assess and treat emotional and cognitive difficulties. They utilize various assessment tools and therapeutic techniques to evaluate an individual’s mental processes and behavior. Neuropsychologists specifically focus on the relationship between brain function and behavior, often conducting detailed cognitive testing.
• Psychiatrists: Psychiatrists are medical doctors who specialize in diagnosing and treating mental health concerns across all age groups. Their primary focus is on the management of medication to support emotional and psychological well-being. While they may also provide therapy, psychiatrists primarily aim to identify the most effective pharmacological treatments to help individuals manage their mental health challenges effectively.
• Neurologists: Neurologists are medical specialists with advanced training in diagnosing and managing conditions related to the nervous system. They possess expertise in a wide range of issues affecting the brain, spinal cord, and nerves, including seizures, cerebral palsy, and other neurodevelopmental challenges. As medical doctors, neurologists understand the anatomy and functioning of the nervous system and are skilled in identifying and treating various conditions that impact neurological health across all age groups.
• Pediatricians: Pediatricians and Developmental Pediatricians are medical doctors with specialized training in developmental-behavioral medicine. They focus on diagnosing and managing developmental challenges across various aspects of child health. These professionals assess growth, behavior, and learning to identify any delays or conditions that may impact a child’s overall development.

When seeking a neurological evaluation, a primary care provider can refer an individual or family to one of these specialists for further assessment and diagnosis. It’s crucial to choose a professional with extensive experience in diagnosing autism, as their expertise can significantly impact the quality of the evaluation. Additionally, consider whether the provider is covered by your insurance, as this can affect out-of-pocket costs. 

Access to specialists can vary widely based on location and demand, with some providers having longer wait times than others. Availability may also differ among specialists, so existing patient relationships can facilitate quicker referrals and make the process more efficient for families. Ultimately, finding the right provider requires balancing expertise, insurance coverage, and accessibility to ensure a timely diagnosis.

Here are the steps to take when considering a professional diagnosis:

1. Get Into the Mindset:
   • Preparing mentally for this journey is essential. Recognize that seeking a diagnosis is a significant step toward understanding oneself or a loved one better.
   • Be aware that the process may take some time, and patience will be important as you navigate finding a diagnostician, assessments and evaluations.
2. Contact Your Health Insurance:
   • Start by checking your insurance coverage for neuropsychological evaluations. Understanding benefits is critical, and in some cases, a referral from a primary care physician (PCP) may be required.
3.  Understand Your Payment Options:
   • If insurance does not fully cover the evaluation, you may be able to find providers who offer sliding scale fees based on income, making it more affordable to access mental health services. 
4. Research Providers:
   • Look for professionals covered by your insurance.
   • Review their websites for phrases that may indicate a more comprehensive and expansive approach, such as “respect for the client’s lived experience,” “neurodiversity affirming,” and “strengths-based” approaches.
5. Configure Filters on Your Searches:
   • Use search tools on mental health provider websites to filter for neurodiversity-affirming professionals, ensuring that you find someone whose practice aligns with your needs.
6. Chat with People in Your Community:
   • Engaging with local support groups or online communities can provide recommendations and insights about therapists experienced with neurodiversity.
   • You can get recommendations from your local autism resource center, autism advocacy organizations like AANE, autism support groups, individuals who have Autistic children or other friends or family members.
7. Prepare for Waitlists:
   • Be aware that some diagnosticians may have extended waitlists. Patience is important during this phase, as the evaluation process can take time.
   • It may be necessary to prioritize urgency over your preferred provider. If timely access to evaluation is crucial, be open to exploring alternative professionals who may be available sooner. But be aware that many insurance plans that cover a neuropsychological evaluation may have limits on how frequently they are done. If you compromise the quality of the evaluator for expediency, you may have to wait several years to try again with coverage. Consult your insurance carrier for your specific policy parameters.
8. Prepare for Your Appointment:
   • Compile a list of self-observations and experiences that lead you to suspect autism for yourself or your loved one. Reflect on life history, challenges, and strengths, whether it pertains to an adult or a child.
   • Diagnostic tools typically rely on a few sources of information: self reflection, descriptions from parents or caregivers about their loved one’s development and a professional’s observation of the individual’s behavior. For adults, it may also be helpful to include insights from significant others, friends, or colleagues who can provide context about social interactions and daily functioning.
9. Understand the Evaluation Process:
   • Typically, 2-3 appointments are needed, which will include interviews and activities to assess cognitive and emotional functioning.
   • A final appointment will usually involve a report of the findings and a discussion of next steps. It’s important to note that a medical diagnosis and an educational diagnosis are not the same. While a medical diagnosis provides insights into an individual’s needs, schools may wish to conduct their own educational assessments to determine appropriate supports and services for students.

Engage with Community and Resources

At AANE, we provide workshops, social events, and support groups for Autistic or questioning adults, as well as for their caregivers. Many individuals and families find community and validation through these experiences. These sessions are designed to facilitate understanding and offer practical insights in a supportive environment.

In addition, our LifeMAP program offers one-on-one coaching for Autistic adults and teens, providing tailored support in navigating life’s challenges.

Further Exploration and Learning

Engaging with media created by and for Autistic individuals can deepen understanding. Here is a sample of relevant accounts you may want to follow:

• AANE YouTube Channel
• Dr. Devon Price
• Nigh.functioning.autism
• Neurowild_
• Autism_happy_place
• Lived Experience Educator
• Autability 
• Neuroclastic

This journey is filled with information, self-discovery, and potential validation for individuals and their caregivers alike. Take your time to review these resources and steps. If you have further questions or wish to schedule a free call with AANE staff, don’t hesitate to contact us. Your path to understanding autism is a personal and significant endeavor, and AANE is here to support you every step of the way.