About receiving a diagnosis: Autism Spectrum Disorder
Paul, from Aspergers From The Inside, asked me if I would like to share my diagnosis story and after some thinking, I’m hoping I can help someone by writing this. The following story was originally published on his blog.
Everyone is in touch with Autism Spectrum Disorder (ASD) in one way or another. Thank you for showing an interest in learning about the different ways people experience the world.
I would say the journey towards understanding my patterns of behavior were linked to having ASD all started in September 2015. One day I was watching a YouTube video of a content creator I admired, I picked up on a three-letter abbreviation I had heard of before, but never looked into: OCD (Obsessive Compulsive Disorder). Unsure of what it meant I looked it up online and started reading. I’m aware of people saying that by reading on the Internet “anyone can have anything”, but I’m not really like that. At least not to the point of jumping to conclusions of my own without talking to someone else first.
I realized after understanding the core concepts of it, there were a significant number of things I had in common with the behaviors of people having OCD. Along the process I also read about ADD (Attention Deficit Disorder) and it seemed to me based on what I had read that I fitted in the category of “you should probably seek out a professional”. Despite that, it took a while before I did anything about it, partially because I was unsure what to do and whether I was overthinking it all or not.
An important personal factor was that at that point in time I had some issues dealing with past experiences in my life that made the process much more difficult for me. Was my way of behaving a result of past life experiences? Or was something hiding beneath, complicating things even more?
If you or someone you know are at this stage in the process, I recommend utilizing time to your advantage. You can take time to talk to people close to you and read (there will be some resources in the end to some books and YouTube channels I recommend). If you have a school nurse or any similar kind of health care professional who are accessible to you I recommend reaching out to them after talking to someone close to you.
In July 2016 my mom sat down to talk to me because I had had some recent questions regarding ADD and OCD. I remember she wrote down on a piece of paper a few related diagnoses and gave me a brief explanation on how they were like. She told me that if any of them had seemed fitting on me based on how I was like as a kid it had to be “Asperger’s Syndrome” (also known as ASD), but she told me she did not believe that was the case. Unaware of what it meant having ASD, I remember feeling deeply offended it was even suggested because I was not an “autistic person”.
In June 2016, the month before, I was able to talk to the school nurse about my past and it really had a big impact on me. If you take anything from this story, know that there is a reason why the trolls shatter in sunlight… don’t carry personal, painful experiences on your own for too long. Be someone to trust and find your trusted person. Talk, listen and support each other. That will help you in life.
In September 2016 I was scheduled for a “let’s talk and see how you are doing” kind of meeting with the school nurse, due to the things we had talked about right before the summer break. In the months between, I had continued to think, analyze and read about what my way of behavior really was connected to. I was certain the past had its toll, but whether something was hiding as well or not was the question.
When talking to the school nurse again the months later, I told her about what I had on my mind and the suggestion of maybe it was Asperger’s Syndrome was brought up again. I was recommended to meet up with a pair of mental health professionals from outside the school, if I was interested, and so I did. They talked to me and after a long session, they eventually concluded with that I should be recommended to a psychologist. They told me based on my descriptions that Asperger’s Syndrome was likely, but that the diagnostic process was long and required talking to a professional over a period of time. The time between I was recommended to go to a psychologist until my first meeting with her was about 3 months. I felt that was a long time, more so than it had to be, even when I was aware I had been lucky to be brought in so fast. I hope for you or someone you know that you/they wouldn’t need this unnecessary waiting.
The first couple sessions I felt very uncomfortable meeting the psychologist. I did not feel welcomed and it felt unprofessional and rushed. I had to do a lot of papers, answering “yes” and “no” questions, to sort me into one of three categories: I was making things up, I needed fast treatment/help, or I had made it to the right/wrong place. By the time I had filled out the last papers, over the course of a couple sessions, I felt completely misplaced. I had had a bad feeling of being there all sessions up until that point and I was questioning if I could trust the psychologist. I wondered if I should seek out someone else or give up. I would say this at this stage in the process it’s important for you to have someone close to talk to and that supports you.
Unsure if giving up was the better option, not knowing where to go if I would need to seek out someone else, I met up for another session and to my big surprise, she was very different this time around. She was nice, and I got a completely different feeling of being there. She explained to me the things that had happened since I came there the first time and up until then, and it all made sense. They have a lot of people being referred to them and they needed to make sure I had come to the right place before spending their resources on me rather than someone else. Maybe your health care system is different, which is likely unless you live in Norway as well, and so this part may be quite different for you or someone you know because of that.
The following months can be summarized this way: I met up for a new session about once a week or every two to three weeks. She spent some time getting to know me better, which was ultimately what I felt had been missing the first sessions when I felt so misplaced, and I also spent some time filling out new papers. These specifically for Asperger’s Syndrome and now with a gradient answer like “yes”, “partially yes”, “partially no” or “no” to different statements regarding social activities, sensitivity and interests. It was hard for me to fill out papers like those because they felt limiting, and especially since I would say I have a contradictory character in certain areas. In retrospect, my black and white way of going about things sometimes also made it difficult for me to answer with the “more fitting answer” between “partially yes” and “yes”, instead of just… “yes”. Thankfully a lot of the questions had a clear “yes” or “no” answer to me. And with the rest what ultimately made it possible for me to decide was that I just had to decide on the one that would be the most fitting — and try to not worry too much about the details, but the overall picture.
I also got the chance to process some of the events in the past that had bothered me a lot, especially in the time after I opened up to the school nurse, through conversing with the psychologist. It’s important to seek out professional help when you have things that affect your daily life. In my case, it was what was “normal” and the difference afterwards was big when looking back and realizing the effect of talking to someone.
Every month that went by after I started seeing the psychologist it felt less likely to me it was really anything at all. I felt unsure if I really had done those gradient-answer-papers correctly and started questioning things and I felt unsure of what to do. I had been able to go through things from the past together with the psychologist and was wondering if it was just “how I am”. I asked the psychologist if she thought if it would be worth it for me to continue the diagnostic process, which we for a period had put on hold. She recommended me to continue and finish the process, so that I would have an answer to the question whether I had ASD or not in case it would come up again later. The psychologist also suggested I could redo the question-papers about Asperger’s Syndrome since it had been a while to see what the result would be.
I was told one would need a score of 60 or higher to meet the diagnostic criteria on the papers I filled out (the papers are not enough on their own, but they are a good indicator, and you also need to have conversations with the psychologist about various topics/areas in life). I realized the second time I did the same papers over again that I had in fact done a good job the first time. I remember laughing a little while answering them because it was clear I could see myself in a lot of the statements. The next time I came to a session I got to know my score on the papers was high, I had +170. Which essentially means “quite autistic” and that further investigation through conversations was needed. In this time-period my mom also met up at the psychologist’s office without me to talk about how I was like as a kid.
In May 2017 the psychologist told me in our last session before the summer break that she had more or less concluded with the diagnosis of “Autism Spectrum Disorder”. She said that we would have a last session over the summer in September 2017 to finish up and asked if my mom would be available to come as well. I spent the summer reading about Asperger’s Syndrome and watching videos on YouTube of people sharing their experiences with having ASD. What I found the most useful and interesting was the positive sides of having ASD and the unique ways people with ASD contribute to and experience the world. Tony Attwood’s The Complete Guide to Asperger’s Syndrome was a great source of information which I recommend anyone with an interest on the subject to read.
Before the last session I tried talking to my parents, telling them I had been told by the psychologist before the summer she was “99% sure she had landed on the diagnosis”, unless something important that would change things significantly would come to the surface in the time until our last session. I also told them I had spent the summer, when I was away from home, reading and understanding what Asperger’s Syndrome was all about and that it described my way of being quite well. They were very upset about that. They accused me of exploiting the health care system to gain undeserved advantages. It was not a good experience to have as a response from my parents like that when I just wanted to inform them I had been told I was “99% autistic” and was unsure about how to tell them.
My mom joined me to the psychologist for the final session and she had not listened to me when I talked to her the week before about the psychologist’s conclusion before the summer. She seemed very surprised to what the psychologist had to say, and she made it very clear she did not believe the psychologist’s conclusion was right. Her examples trying to prove the psychologist wrong only enforced our conclusion and so we finished up and I received my diagnosis.
In the following weeks she did not talk nicely to me. It was difficult for me to talk to her about it and she kept answering my requests with that that she did not believe I had ASD. What made it the most difficult for me was the general lack of knowledge about ASD, which was why I decided on writing my story… in the hope I can help someone. I had spent hundreds of hours reading, watching, thinking, analyzing and listening to the topic of Asperger’s Syndrome to really understand what it was. But I had difficulty explaining myself to someone who had not done even a portion of my research on the topic.
There was one big factor in my case that made things difficult: despite the characteristic of being like a “chameleon” is usually only used to describe females with Asperger’s Syndrome, I fall into that category too. I was happy to discover that Attwood had mentioned in his book The Complete Guide to Asperger’s Syndrome that while the traits of “seemingly fitting in” and “mimicry” is mostly seen in girls on the spectrum, he had encountered boys who were like that, too.
That lead me to one of the big questions I had in my mind the following time after being diagnosed with ASD. If I had been undiagnosed for almost 20 years… who else are living undiagnosed like I did for so long still? People like me who would have tremendous value in knowing what this “something” is?
I am unsure how long it took, maybe about two months, but my mom now supports the conclusion with my diagnosis and respects it. We’ve had some interesting discussions in recent times about ASD and my childhood and things are good. I want to mention that my mom is a good and caring mother, it was nothing bad that happened in the time after my diagnosis. It was just a more negative undertone in conversations than I was used to because of her disagreement with the psychologist’s conclusion. Undoubtedly from a source of “wanting the best for me”.
The time after having an official diagnosis was interesting to me. I finally allowed to use the information I had acquired on the topic of Asperger’s Syndrome, through my extensive research, on myself. I found it to be removing a lot of weights off my shoulders and made me allow myself to be more kind towards myself, more tolerant and understanding of my own patterns of behavior. I challenged myself to try to be comfortable with prioritizing myself and my own interests and values. I tend to prioritize others over myself and be a “yes” person, but in this process, I was able to make a better balance.
I am aware that a lot of the descriptions are not with a lot of personal details, but I wanted to talk around it in a way that would not give out too much about me personally while still getting the knowledge and experiences across. I hope that my diagnosis story was of any value to you.
I have also read a couple books that I found helpful and interesting:
- The Complete Guide to Asperger’s Syndrome by Tony Attwood.
- Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age by Sarah Hendrix.
- Love, Sex and Long-Term Relationships: What People with Asperger Syndrome Really Really Want by Sarah Hendrix.