My Autism Diagnosis: Unpacking the Unexpected Journey to Self-Acceptance

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This is a personal post where I’m sharing my journey, and I hope you find it helpful.

On July 11th, 2025, at 37 years old, I finally received an autism diagnosis. For most of my life, I had no idea this was a possibility. From the outside, I’ve often been seen as a highly organised, kind person who enjoys chatting with others and is always helpful. Yet, beneath that surface, I was prone to depression, often didn’t enjoy life, and found it incredibly difficult to simply exist in this world.

The turning point came in late 2022 when I was nearly 35, and I was diagnosed with Rheumatoid Arthritis (RA). For those unfamiliar, RA is a chronic autoimmune disease where the body’s immune system mistakenly attacks its own healthy joint tissue, causing widespread pain, swelling, stiffness, and potentially affecting other organs. This was a massive blow and a profound wake-up call, forcing me to shift my focus entirely to my well-being. It was during this period, when I started therapy, that the idea of me being autistic first came to light.

Interestingly, both Rheumatoid Arthritis and autism came to me as a ‘diagnosis.’ The word itself often carries negative connotations, suggesting an illness or something to be ‘fixed.’ My goal is absolutely to heal from RA, as it significantly affects me physically and in many other ways. However, autism is a different story entirely; it’s not something to be healed from. For me, my autism is a profound strength. It helps me excel at work, simplify complex processes, and communicate in a clear, human-friendly way, cutting through jargon that might exclude others. It also empowers me to champion the successes of those around me. For me, autism isn’t something negative to be eradicated; it’s a vital, integral part of who I am—a part that was previously misunderstood and unsupported.

For the past two years, and before being diagnosed with autism, I’ve been deeply connected with the idea of autism being a part of me. Yet, despite this personal understanding, I wasn’t confident enough to talk about it publicly. I’m not entirely sure why; perhaps it was a lack of self-assurance, or the societal pressures of being a woman, that made me usually keep quiet. But since receiving my official diagnosis, oh boy, I want to wear a t-shirt that proudly declares I’m autistic! This diagnosis has been a powerful catalyst, empowering me to embrace and share this fundamental aspect of my identity with the world.

However, the journey to this diagnosis has not been easy, particularly in the immediate aftermath of reading the report. I dive into the complexities and unexpected turns of this journey deeper in this post. Later, I’ll share practical tips on how to prepare for an autism assessment, what to expect during the process, and what steps you can take after receiving your report.

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Shifting Perspectives: From ‘Fixing’ to Flourishing

I’ve noticed that many public sector initiatives, like the Access to Work Scheme or Neurodivergence Assessments, often focus on the perceived ‘negative’ aspects of neurodivergence, framing it as a problem to be fixed. While I get this perspective, I believe it’s crucial to acknowledge and discuss neurodivergence from a positive standpoint too. Both the challenging and beneficial aspects of being neurodivergent deserve to be welcomed and respected. I’m incredibly fortunate to be part of Exceptional Individuals, an organisation that champions neurodivergence and truly celebrates its strengths. All our work at Exceptional Individuals is delivered by neurodivergent, passionate individuals, many of whom are neurodivergent themselves. This shared understanding is vital.

Right after my formal assessment and getting verbal confirmation of my autism diagnosis, I started feeling an overwhelming sense of confidence and pride. Perhaps it’s the validation from self-discovery and insights from therapy after 37 years of masking, but it’s already brought about a massive shift in my life. I feel an urge to proudly explore what it means to be autistic, to chat with those who might question my self-identification based on their perception of my life, or wonder how I’ve managed without formal support. My self-taught strategies and accumulated wisdom have helped me thrive at work, fostering an environment where colleagues feel welcome, supported, and comfortable discussing both their struggles and their triumphs. However, this did come at a cost to my health and my wellbeing, contributing to the autoimmune disease I’m now managing. I hope that through therapy and a deeper understanding of my autism, I can heal permanently, though I know it’ll take time.

Therapy has been profoundly instrumental in this journey. Without it, I’m unsure where I’d be today. It’s been vital in navigating my mental health, understanding what my potential autism might look like for me, and ultimately discovering who I am as a person—what I truly like and dislike, something I’ve always struggled with. Crucially, my therapy is delivered by someone who not only truly understands neurodivergence but is also a neurodivergent woman in her 50s. This shared perspective, particularly her deep understanding of masking, made all the difference.

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The Report’s Unexpected Negativity

I had genuinely believed my Autism Assessment Report would echo the supportive and reassuring experience of the assessment itself. I expected it to be a comfortable read, perhaps highlighting areas I found challenging, but always with an understanding and affirming tone. What I received on Tuesday morning was the complete opposite. The report was overwhelmingly negative, a stark and shocking contrast to the positive interactions I’d had. I was completely unprepared for its harsh focus on deficits, with seemingly no acknowledgement of my strengths or how I’ve navigated my life. Reading it left me frozen and unable to concentrate, to the point where I needed to take an immediate day off work, which, thankfully, my team understood and supported. I had anticipated a difficult read in the sense of confronting past struggles, but I never imagined the report would feel so utterly disaffirming.

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Processing the Impact and Finding My Frame

Once I read the report, I immediately spoke with my partner. I took time to reflect, to cry, and to get angry. This period of intense emotion led to a crucial realisation: I’ve already had countless conversations with my partner that validate my experiences. I also recognised that many public, free support systems often view neurodivergence through a negative lens, seeing it as something to “fix.” If you demonstrate any strength or wisdom, you might even be deemed ineligible for their support.

This understanding helped me pre-frame the report’s negativity. It’s a snapshot of my struggles, yes, but it absolutely doesn’t invalidate my resilience. It brought to mind a powerful scene from Good Will Hunting, where Will (Matt Damon) wants to know what’s in his file, and Sean (Robin Williams) assures him the abuse he suffered wasn’t his fault. This perfectly encapsulates what happens to many neurodivergent individuals who are left to navigate life unsupported, misunderstood, and often feeling like something is inherently “wrong” with them. I certainly felt that way, even feeling stupid at times.

From Struggle to Strength: A New Understanding

It’s becoming increasingly clear to me that my past struggles weren’t due to personal failings, but rather because I was navigating life and the world with tools and an understanding that simply didn’t fit. These challenges happened to me, more than because of me, because the world didn’t understand me, and I didn’t yet understand myself. This realisation brings immense relief. Rather than feeling ashamed, I already feel incredibly proud of how I’ve survived and thrived with limited understanding. This newfound wisdom and openness are precisely what I now want to use to help others on their own neurodivergent journeys, fostering understanding and championing their strengths.

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Navigating the Assessment Wait: Tips for a Smoother Experience

If you’re thinking about an autism diagnostic assessment, here are some tips based on my experience so far, to help you prepare and navigate the waiting process:

• Initial GP Contact and Referral Form: Once you contact your GP for a referral, you’ll likely fill out a special form (AQ10). Be aware that this form might not fully capture the experiences of those who have heavily masked their autism. I barely met the criteria myself. When filling out the form, I advise complete honesty.

• Waiting Times and Follow-Up: After referral, waiting times can vary from several weeks to a couple of years. Mine took over two years because my initial referral got lost. After two years, I contacted my GP for a follow-up, and they helped me complete the same form again. Within a month, Psychiatry-UK contacted me to book the assessment.

• Choosing Your Specialist: You will get the option to choose your specialist, which is incredibly helpful. Read their profiles and any available reviews. I chose someone specialising in neurodivergence co-occurrence and experienced in supporting adults diagnosed later in life, particularly understanding masking, which was crucial for me.

• Pre-Assessment Questionnaires: Before the assessment, you’ll get a lengthy questionnaire about your life. Take your time completing it and be as honest as possible. You’ll also be asked to share an ‘informant questionnaire’ with someone who knows you well. I asked my partner to complete this. The informant’s perspective is vital for the assessment’s completion.

• Understanding Masking While You Wait: I strongly encourage you to do your own research about masking, especially if you identify as a woman or a man, as masking can present differently across genders due to social expectations. There are plenty of resources available, including free online tests you can take to help you understand if you might be autistic but mask a lot. While you wait for your assessment, keep exploring the world of autism and get comfortable with yourself. This self-discovery journey will empower you, so during the assessment, you can become more confident in explaining how you operate in the world, where you struggle the most, and how you overcome those struggles.

• My Assessment Experience: What to Expect During the Process: I’ve learned that the assessment usually involves two people: a main lead and a co-lead. Having both is crucial, as one can ask questions while the other observes. If done virtually, you’ll likely need to set up your camera to cover you from the waist up. This lets them observe any fidgeting or use of stim tools. When preparing for my assessment, I focused on creating a list of how I thought autism might affect me and my specific traits, anticipating I might go blank under stress. I’d advise others to do the same. My plan was to focus on being honest and, if I didn’t understand a question, to voice it rather than guessing or overthinking. I wasn’t rushed and was given ample time and space when needed. The questions were not simply repetitions from the questionnaire but more like follow-up questions to gain a deeper understanding. The assessment lasted just over an hour. At the end, I was asked to stay on the call while the practitioners discussed their findings.

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Understanding Your Future Report and Post-Diagnosis Support

Remember that the assessment report often focuses on challenges and deficits. This can be a tough read, but it doesn’t define your entire experience. Along with my report, I received a pack of resources. While I can’t include the entire pack here, some key takeaways and common advice I’ve already started to embrace include:

Post-Diagnosis Advice (Proactive Steps I’m Taking Now):

• Processing the Diagnosis: I’m already giving myself time to process what I’m learning through self-discovery.

• Reasonable Adjustments: Upon receiving my autism diagnosis (right after the assessment), I was provided with two letters: one for educational purposes and another for my employer. They explain what autism is and provide examples of reasonable adjustments. While these letters are a good starting point, I believe a more comprehensive approach is beneficial. For instance, after sharing the employer letter, a specific Workplace Needs Assessment would be a valuable next step. Exceptional Individuals offer such assessments, always from a neurodivergent perspective, focusing on both your strengths and any challenges.

• Connecting with Others: I’m chatting with family and friends for understanding and support. I’m also exploring connecting with other potentially autistic individuals and their personal stories. YouTube is a fantastic resource here; many people share their authentic journeys and experiences, which can help me understand myself better.

• Learning More: I’m educating myself further about autism through trusted resources. While I don’t personally use platforms like Instagram, Facebook, or TikTok, I’m sure there can be useful information and relatable experiences shared by individuals there, too. I’d always suggest looking for specific topics, like “female autism masking,” to see what comes up.

• Seeking Support: Do consider reaching out to your workplace for available support. I would also encourage you to explore local support groups and charities focused on autism. Your GP could also provide further advice.

• Connecting to Your Feelings: I’m actively learning to acknowledge and accept my feelings of stress or anger rather than rejecting them. It’s perfectly okay to experience these emotions. Personally, I’m discovering healthy ways to release pent-up anger, such as joining a local boxing club where a £5 entry provides great relief. Additionally, being open with others about my feelings, especially since I struggle to name emotions, has been incredibly helpful. By expressing how I feel, or that I need time and space, I not only accept myself and act accordingly but also help others understand me better. I apply this approach in both my personal life and at work.

• Using AI with Critical Thinking: Tools like AI can be helpful for asking questions and gaining information. However, critical thinking is absolutely required. Don’t take everything for granted; take the information, reflect on it, and see how it truly resonates with your own experience.

• Embracing Personal Adjustments and Quirks: The biggest lesson for me has been to accept myself fully. It’s truly okay to be who you are, with all your quirks and strengths, and to adapt how you interact with the world to suit you.
  • At work: Now, when an unexpected message comes asking for a call, I no longer immediately agree and then stress about the unknown. Instead, I confidently pause, ask for more details, and inform them I’ll get back to them. This provides me with the necessary time to prepare and make a decision. I’ve also embraced my habit of looking away during conversations to maintain focus, accepting it as perfectly fine for me.
  • I am also learning to stop pressuring myself to always achieve the highest standard, and that it’s okay not to. I’m also learning not to expect my standards to be others’ standards. It’s okay not to feel 100% or be 100%. It’s okay to make mistakes, but what’s crucial is to be supportive of others and yourself.
  • Outside of work: I have some endearing quirks, like how I eat. I always use my cheeks to process food, ensuring an even amount in each cheek (no wonder I have big cheeks, haha!). I’m also much more open about using fidget toys, like smart putty or funny silicone dogs filled with putty. By accepting myself and not being afraid to show these to others, it genuinely helps me feel more comfortable and actually more relaxed.

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What to Know About Autism’s Impact (and what I’m preparing for):

• Not an Illness: Autism isn’t an illness or disease that needs treatment or a cure. It’s a different way of thinking and being.
• Focus on Quality of Life: Interventions aren’t always necessary for autism itself. The focus should be on improving your quality of life.
• Strengths and Resilience: For most, autism isn’t disabling. The strengths associated with autism can enhance well-being, success, and overall quality of life. Identify strategies for resilience and managing challenges like social and sensory fatigue to prevent burnout.
• Workplace/Education Adjustments: If employed or in education, discuss your diagnosis to ask for reasonable adjustments and support.

Further Assessments (if needed):

• Psychosocial Needs Assessment: For significant impairments in social interactions and daily living tasks (via GP referral).
• Occupational Therapy (OT) Sensory Assessments: For significant sensory difficulties (via healthcare provider or occupational therapist).

Mental Health Support:

• Co-occurring Conditions: Many autistic individuals experience co-occurring mental health challenges (e.g., anxiety, depression, ADHD, and sleep disturbances). Feel free to discuss these with your GP for further assessment and referral to therapists experienced in working with autistic individuals. Remember, seeking support from professionals with a neurodivergent-affirming perspective is crucial.

Workplace/Educational Support:

• Reasonable Adjustments: Modified work schedules, quiet workspaces, extended time for tasks/exams.
• Specialised Support Services: Mentoring, counselling, coaching.
• Disability Advisors/Support Teams: Designated teams to help navigate academic/work challenges.
• Staff Training: For employers/educators to better understand and support autistic individuals.
• Peer Support: Connecting with others who have similar experiences.
• UK Resources: National Autistic Society, ACAS, Gov.uk, Access to Work scheme.

How Exceptional Individuals Can Help

Beyond the general advice and resources, I want to highlight the specific support offered by Exceptional Individuals, where I’m proud to be. We understand that finding the right support, especially in the workplace, can be tricky. That’s why we focus on neurodivergent-affirming services:

• Workplace Needs Assessments via Access to Work (ATW): We carry out impartial Workplace Needs Assessments to identify solutions and reasonable adjustments for neurodivergent employees. This can cover everything from assistive technology and environmental alterations to neurodiversity coaching and team awareness training. These assessments can be fully funded through the UK government’s Access to Work scheme, which is designed to help disabled and neurodivergent people get or stay in work. We can help you navigate the ATW application process to ensure you get the support you’re entitled to.
• Specialist Coaching: Our neurodiversity coaching bridges the gap between knowing what support you need and confidently implementing it, without the burnout or overwhelm that often comes with traditional approaches. Our coaches, many of whom have lived experience of neurodivergence, offer personalised programmes to enhance skills, build confidence, and develop effective coping strategies for workplace challenges. This can also be funded by Access to Work.
• Empowering Resources: We offer a range of free resources and webinars to uplift the entire neurodivergent community, helping both individuals and employers foster more inclusive environments.

If you’re looking for support that truly understands the neurodivergent experience, especially while navigating the path to diagnosis, I encourage you to explore what Exceptional Individuals offers.