Getting My Autism Diagnosis as an Adult- What it Meant to Me
In this blog, I will do my best to explain my journey to getting an autism diagnosis as an adult at 32. I want to express how I felt before getting my diagnosis, the events that led me to consider an autism assessment, my assessment experience and how I processed the diagnosis in the greater context of my daily life. I hope someone in a similar situation can read this post to help ease any potential anxieties or concerns about going for an autism assessment. You may also find it helpful if your loved one is currently going through this process.
Before going for an assessment
As a child, I distinctly remember not enjoying time with my peers. I didn’t have friends and was content organising my cars, drawing or tinkering with computers. I even opted to spend my lunch breaks in primary school organising the library books to avoid the rumbling mayhem of the playground.
I was the last to achieve handwriting skills in primary school. Although I excelled in maths, vocabulary, music and science, I struggled to make and maintain friendships. This left me feeling like an alien.
Moving on to secondary school only intensified the feeling that I was built differently from others. I would get frustrated by the interests of others and saw the magnification of interpersonal conflicts as a waste of time. Furthermore, the increased physical contact in crowded and noisy hallways led me to find solace in unused music rooms or leaving the grounds entirely.
During this period, I became increasingly irritable at home and even experienced bouts of depression due to the daily negative experiences. This led me to see many therapists who all failed to identify any basis for why the world and its people seemed so entirely unrelatable to me. I would explain to them that I felt like I had to wear a different mask for every social interaction and couldn’t justify acting as myself in front of others.
These issues continued into my adult life, where I struggled to understand the expectations of relationships and felt somewhat hopeless as I failed repeatedly. I also found working in roles that were public facing very difficult. I often questioned people’s motives for acting the way they did. I often wondered why I didn’t get it or what I was doing wrong like other people had a secret hidden rule book I had never read.
What led me toward an autism assessment
It’s fair to say I had no knowledge of autism until 5 or so years ago. I had never known why I found interactions so confusing, and many doctors in the past had tried to slot me into different diagnoses with no real success. I only became more confused and frustrated.
It wasn’t until I started working in an environment with people who understood autism that I could recognise that I may be autistic. Before working alongside professionals who had experience with autism, I would have been reluctant to accept the likelihood that I might be autistic due to my limited understanding.
As my awareness of autism increased and my understanding of how it can present in an individual, I decided to take an AQ50 and discuss my experiences with my GP. I was shocked to discover no simple way to determine whether you are autistic. There was no service available for adults in my area, and I found that I would have to be added to a longer waiting list for the county.
At this time, I decided to begin a search for a private autism assessment service.
How I felt during the assessment
The fascinating assessment process provided little moments of discovery for my mother and me. It is fair to say that certain aspects of my behaviour as a child went almost unnoticed due to my academic achievements and ability to get on with things as long as there were no interruptions to my routine.
This contrasted with my sister, who was diagnosed with autism at a young age alongside her Learning Disability. Her emotional needs and inability to cope with changing environments led to a predictable and stable routine growing up. I didn’t experience difficulties until secondary school. As a result, my mum asked herself many questions about how she had unknowingly adapted to my requirements growing up, such as always carrying my collection of 46 Matchbox cars in her handbag. She had tried to take fewer out with me. Still, I would always do a rigorous inventory check whenever we reached our destination. In the scope of our household, being upset about something like this wasn’t unusual.
The part of the assessment I did by myself was pleasant and felt more like an informal meeting. I was stunned when I read the report that I had not managed to mask quite as well as I had thought. During my 20s, I learned several socially engaging strategies, some less valuable than others. However, despite my in-depth study of social patterns, I had missed specific ques during the assessment that, to this day, I couldn’t pinpoint.
Overall I found the assessment thorough and efficient.
How I felt after my autism diagnosis
After receiving my final report and feedback session, I was glad to find out that the clinician had included some recommendations and suggested reading to help me further understand my autism diagnosis. My family were supportive and read books and watched youtube videos to help them try to understand my diagnosis better.
After being diagnosed, I continued to learn more about autism symptoms. Such as burnout, masking and theory of mind. It still stuns me that people don’t understand everything I do and possess the same knowledge.
I do not have a large friend group, but I spoke to my close friend and was relieved by his response, “I think you are the last person to find out, mate, so don’t worry; it makes no difference”.
The most significant benefit of going through the assessment has been learning more about myself and how I process the world around me. This has helped me develop new coping strategies to help minimise my anxieties and stressors.
Summary
I hope that sharing my experience of the assessment process could help those asking themselves similar questions and considering an assessment for themselves. Understanding my neurology better has helped me become closer to those around me and put less pressure on myself to fit in.
Categorised in: Adult Autism, Assessments