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How to Access a Diagnosis for Autistic Adults (in the United States)

For many autistic adults in the United States, seeking a diagnosis can be a challenging and often confusing process. The system has been designed to diagnose children and hasn’t caught up to the demand of missed adults.

In this post, we'll explore the steps to obtaining a diagnosis, from understanding the barriers to finding the right provider and preparing for the assessment.

Understanding the Barriers: The Gap in Adult Diagnosis

The current diagnostic system has primarily been designed to diagnose children, and the demand for assessments of adults has outpaced the available resources. There is a scarcity of experienced assessors for adults, and those who possess the necessary training are limited. While insurance may cover some costs, individuals often find themselves paying out of pocket for the evaluation.

Determine If You Need a Diagnosis: Weighing the Pros and Cons

Before embarking on the official diagnosis journey, it's valuable to assess whether obtaining an official diagnosis is helpful for your individual circumstances. While a diagnosis may not always grant access to additional services and could be a barrier in some instances (such as immigration), it can provide benefits such as legal disability protection, workplace accommodations, correction of potential misdiagnoses, and external validation. However, it's important to note that a self-identification can still offer a sense of community and self-accommodation.

Find a Provider: The Neurodivergent Therapists Directory

Locating a qualified provider is a critical step in the diagnosis process. Due to licensing requirements, it's essential to find a professional licensed in your state. Start your search by looking for neurodivergent professionals, utilizing resources like the Neurodivergent Therapists Directory. Check for Autism assessments in the "services" section and contact them for details on insurance, cost, waitlists, assessment tools, and whether they provide a diagnostic report.

When There Are No Neurodivergent Providers: Casting a Wide Net

In the event that neurodivergent providers are unavailable, cast a wide net in your search. Inquire with your primary care or mental health provider, if you have one, and seek referrals from other autistic individuals in your state. Ask any autistic providers for recommendations and utilize online searches by combining "adult autism assessment" with your state. When contacting potential providers, conduct interviews to assess their experience with adult diagnoses, and neurodiversity-affirming approach. Request referrals if they are not the right fit.

Prepare for the Assessment: Providing Comprehensive Information

The assessment process is multi-faceted, and thorough preparation can. make it easier and more productive. Document traits you are aware of now, including those observed in early childhood and your memories of traits in childhood. Clearly articulate the impact these traits have on your daily life and internal state. Be aware of the possibility that the provider may wish to interview a family member who knew you in childhood.

Bring water, snacks, and any sensory aids to the assessment, whether conducted in person or via telehealth. Don't hesitate to request breaks if needed, and be aware that the assessment process may span 1-3 visits, occasionally more if additional information is required.

Navigating the diagnosis journey as an autistic adult requires perseverance and a proactive approach. By understanding the barriers, weighing the pros and cons, finding a qualified provider, and adequately preparing for the assessment, individuals can empower themselves in seeking the validation and support they need.

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