Adult Autism Series
The Journey to Diagnosis
Clinical Psychologist, Auckland, Milford, Ponsonby & Parnell
For many autistic adults, the journey to diagnosis is a deeply personal and transformative experience. It is a path marked by years of uncertainty, self‐reflection, and sometimes frustration—but also one of empowerment and understanding. In recent years, increased awareness and evolving diagnostic criteria have shed light on the unique experiences of autistic adults, allowing more people to finally put a name to what they have always known to be true. This article explores the challenges and triumphs associated with receiving an adult autism diagnosis, providing insights into why the journey is so significant and offering take‑away points to help you navigate your own path.
A Long Overdue Recognition
Historically, autism was primarily recognised as a childhood condition. Many diagnostic criteria and assessments were designed with children in mind, leaving a significant number of adults—particularly women and those from marginalised groups—undiagnosed. As diagnostic frameworks have evolved, many adults who spent years feeling “different” without understanding why are now finally able to access a diagnosis. It is estimated that approximately 1–2% of the population is on the autism spectrum, yet a large number of autistic adults remain undiagnosed. For these individuals, receiving a diagnosis later in life can be both a relief and a turning point.
The Emotional Landscape of Diagnosis
The journey to diagnosis is often filled with a mix of emotions. Many adults report feelings of validation and relief upon receiving their diagnosis. It provides a clear explanation for lifelong challenges in areas such as sensory processing, social interaction, and communication. This newfound clarity can help reframe previous experiences that were once seen as personal failings into the context of a neurodiverse identity.
For some, the diagnosis may also bring about a sense of grief over lost opportunities or a prolonged period of misunderstanding. However, it is essential to remember that every part of your journey has contributed to the person you are today. A diagnosis is not an endpoint—it is an invitation to embrace your unique strengths and challenges and to seek out the support you need.
Barriers on the Road to Diagnosis
Several factors can delay or complicate the diagnosis of adult autism:
Evolving Diagnostic Criteria:
Early diagnostic frameworks did not always capture the full spectrum of autism, particularly in females or those with subtler traits. This means that many adults who might now meet the criteria were previously overlooked.
Societal Expectations and Stigma:
Societal norms often favour neurotypical behaviours, leading some individuals to mask their differences. This masking can make it harder for professionals to identify autism in adults, as individuals learn to camouflage their traits to fit in.
Lack of Access to Experienced Professionals:
Not all clinicians are equipped with the knowledge and experience required to diagnose adult autism accurately. Limited resources and long waiting lists can further complicate the process.
Internalised Stigma and Self-Doubt:
Growing up in a society that often marginalises neurodiversity, many adults may feel reluctant to seek a diagnosis due to fear of being misunderstood or labelled. Overcoming internalised stigma is a critical part of the journey to diagnosis.
The Impact of a Diagnosis
Receiving an autism diagnosis in adulthood can be a watershed moment. It often opens the door to self‑acceptance and empowerment, as the diagnosis provides a framework for understanding one’s strengths and challenges. Many adults experience a profound sense of relief—finally, there is an explanation for why certain social situations feel overwhelming or why particular sensory experiences are so intense.
Embracing a New Narrative
With a diagnosis comes the opportunity to rewrite your personal narrative. Instead of viewing your traits as shortcomings, you can begin to see them as unique aspects of your identity. For instance, while sensory sensitivities may pose challenges in certain environments, they can also be a source of rich, detailed experiences of the world. Similarly, a preference for routines, often seen as rigidity, can also be a strength that brings structure and reliability to your life.
Accessing Support and Resources
A formal diagnosis can also open the door to valuable support systems. Many autistic adults find that connecting with peer support groups, engaging with counselling services that respect neurodiversity, and accessing specialised resources can make a significant difference in their quality of life. It can also provide a clear path for workplace accommodations and other practical adjustments that improve daily functioning.
The Role of Self-Advocacy
The journey to diagnosis is not only about receiving a label—it’s about learning to advocate for yourself. Self‑advocacy is a critical skill for autistic adults, empowering you to communicate your needs and to seek out the support necessary to thrive. Once diagnosed, many find that they are better able to set boundaries, request accommodations, and pursue opportunities that align with their strengths.
Steps Toward Self-Advocacy
Educate Yourself:
Understanding your diagnosis is the first step. Learn about the ways in which autism affects you and the resources available to support your unique needs.
Connect with Others:
Joining support groups or communities can provide a sense of belonging and offer practical advice from those who have navigated similar journeys.
Communicate Your Needs:
Whether in the workplace, in social settings, or within your family, openly communicating your needs is essential. This might involve explaining why certain environments are overwhelming or requesting specific accommodations.
Celebrate Your Strengths:
Recognise that your unique way of processing the world is a strength. Embrace your attention to detail, your creative problem‑solving skills, and your unique perspective as valuable contributions to your community.
Moving Beyond the Diagnosis
A diagnosis is not an endpoint; it is the beginning of a journey towards understanding, acceptance, and growth. It provides a foundation on which you can build a supportive network and access tailored resources that address both your challenges and your strengths. Embracing your diagnosis means embracing every part of who you are, and it can pave the way for a future filled with potential and possibility.
The Road Ahead
As you move forward, remember that your journey is uniquely your own. The process of understanding adult autism is ongoing, and each step you take is an opportunity to learn more about yourself. Whether you’re seeking additional assessments, connecting with others, or advocating for change in your community, every action you take contributes to a broader movement towards inclusion and understanding.
Take‑Away Points
A Diagnosis is Empowering:
Receiving an autism diagnosis in adulthood can be a liberating experience that validates your experiences and provides clarity on lifelong challenges.
Barriers Exist but Can Be Overcome:
Evolving diagnostic criteria, societal stigma, and limited access to specialised professionals can delay diagnosis, but self‑advocacy and supportive networks are key to overcoming these hurdles.
Your Diagnosis is a Foundation for Growth:
With a diagnosis, you gain access to resources and support systems that can help you build a fulfilling life while celebrating your unique strengths.
Self-Advocacy is Essential:
Learning to advocate for your needs is a crucial step in the journey to empowerment. Educate yourself, connect with peers, and communicate your needs clearly.
Your Journey is Unique:
Embrace your individuality. Every aspect of your journey contributes to who you are, and your experiences are valid and valuable.
The journey to an adult autism diagnosis is one filled with challenges, revelations, and growth. It is a path that requires courage, resilience, and self‑advocacy, but it also offers the gift of self‑understanding and empowerment. By reframing your experiences through a neuro‑affirmative lens, you can begin to see your differences as strengths and unlock a future filled with possibility.
Remember, your diagnosis is not a limitation—it is a key to understanding your unique mind and harnessing the incredible potential that lies within you. Every step you take on this journey contributes to a broader movement towards a more inclusive and accepting society.
If you’re considering exploring your own experiences further or feel that a tailored assessment might help you better understand your strengths and challenges, please consider reaching out. Our supportive team is here to guide you through every step of your journey.