I have been wondering about how to add my story of diagnosis to the blog. I thought of going through my journals and emails and notes, and adding things by date. But I think instead I will try to be chronological, but also group things into categories. So this post will look at the lead up to diagnosis, and discuss why I wanted to be evaluated.
When a close female relative was diagnosed in 2015, I began to read a lot about autism, especially autism in women and girls. And in that process I started to see myself in the various checklists and pamphlets.
Over the years I flirted with diagnosis. I contacted psychologists that were willing to diagnose women online. But the reviews of the practitioner made me feel as though I wouldn’t be satisfied with their assessment. Even if she said I was autistic, I would have had questions.
I learned that self-diagnosis was at the time quite accepted in the autistic community. I looked at blogs, read books, took quizzes, and graded myself against the DSM-5. But again, I had that doubt in the back of my mind where I felt I needed professional validation in order to validate it for myself. I don’t disagree with people who have self-diagnosed, and completely understand their plight.
First, diagnosis can be very costly, and for many people it’s just not affordable to them. Particularly if the diagnosis is not going to help them with any disability supports, and it’s just a matter of knowing the answers for themselves. And even for people who can afford it, it’s difficult to find people who are expert enough to make the diagnosis. Many professionals only work with children. And if you go for evaluation as an adult, the professional you see may know the stereotypical or classical autism characteristics, but have no ability to see it in an adult who masks really well. They don’t see the cracks in the mask, or know how to elicit the true self. Often adults have been masking so long that we don’t even know who our true self is. We ourselves often don’t know where the mask ends and our true self begins.
My relative was diagnosed in Australia, and I was in the USA when I began to think about diagnosis for myself. So that made diagnosis even more challenging. But I was still seeking answers. I saw a psychotherapist in 2016 and mentioned my concerns and she told me that I was too self-aware to be autistic. Then In 2017 I attended an autism expo, and listened to a speaker who was a neurologist. She was affiliated with a hospital that took my medical insurance, and worked in the Neuropsychology Division of Behavioral Health. The hospital had also confirmed my relative’s diagnosis so I was a little more confident that she might be helpful. I booked in for a Neuropsychological Assessment with her.
In looking at my report, it part it states ‘Specifically, she reported frequently feeling overwhelmed, easily distracted, and being late to events. She also reported social issues as a child, sensory overload, having a melt-down due to frustrations, with a history of self-injurious behaviors. She reported that her relationships are suffering as a result of these symptoms…She reported spells of depression on and off for the majority of her life…she will shut down and lose interest in things…it is harder for her to engage in self-care…She also reported some impulsivity characterized by impulsive eating and shopping…She reported hyperactivity but denied symptoms of mania…With respect to anxiety she reported ‘melt-downs’ that continued into adulthood… While they are less frequent now, she reported self-harm… Mood is currently managed with SNRI medication but noted that she continues to feel ‘wired and stressed’ on a daily basis….Physically patient reported difficulties obtaining adequate sleep and noted both mental and physical fatigue during the day… sensory overload leaves her feeling overwhelmed on a daily basis. Patient reports sensitivity to light and noise, poor coordination and mild pain in a number of locations. Patient reported symptoms of checking behaviors, including for safety but also checking symptoms in her body.’
And after all of that, the neuropsychologist determined that the only diagnosis she could justify with the DSM-5 was Generalized Anxiety Disorder. Which I was already diagnosed with before I met her, along with OCD, Panic Disorder, Depression.
So I set aside my quest for a diagnosis. I don’t really remember how I felt after that, but certainly in re-reading it, I feel dejected. Angry. Frustrated. Why wasn’t anyone listening to me? Why didn’t anyone see what was going on? I wasn’t convinced that she was correct. She never once listed any evaluation of me against the ASD diagnostic criteria. Only the Anxiety Disorder criteria. I wasn’t satisfied with the doctor or her evaluation.
Back and forth I went in my own mind. Maybe I had ‘traits’ but not enough to diagnose. Maybe I was wrong. Maybe I was right. When the diagnostic criteria is subjective it can be hard to have perspective.
I left it for a long time, but as my mental health once again began to significantly deteriorate when I was sent for ultrasounds to check on my gallbladder in 2020, I began to think about it again.
An undated journal entry from the end of August 2020 states ‘I am flooding with what-ifs and I’m angry that great things are happening, and instead of focusing on that I am here worrying about what if I am dying? What if I’m sick? What if I have to have more medical testing? I am so exhausted by this and I’m so angry that I have this happening. And I don’t know why. Why it keeps resurfacing. Like I feel at peace and like I can get through any outcome. And then BOOM! The fear and anxiety and panic all come flooding back in and then I feel like I’m fighting again ….I spend so much time wishing this fear would go away. Wishing the thoughts would shift. And the more I stress about it the worse I feel, and all the judging and the fear…
December 13, 2020 I wrote
Call it what you want. I feel like I’ve fallen into another abyss. Anxiety. Stress. Panic. OCD. Checking. Fear. And then the judging. Why do I keep repeating this cycle? When I can see it coming. When I know the pattern. When I am familiar with all of the actions, thoughts, behaviours. Why?
January 1, 2021 I wrote
Sometimes I feel this depth of emptiness, melancholy…and today I feel such heaviness and so much pain. And it’s so amplified by songs and the vibration of what’s transmitted. And it feels like grasping for something to take the pain away. Or to absorb some of it. Why am I so sensitive?
January 3, 2021 I wrote
There’s been a lingering melancholy weighing over me…A month’s worth of medical anxiety. Avoidance of my feelings around the holidays….and times when I did release those gut wrenching, heartbroken tears and then anxiety flare-ups again and again and I don’t know how to stop things like that from happening. Why does this keep happening? How do I heal?
And as I pour through my journal entries, going back to my early twenties, I see the same cycles over and over again. I see someone who has been ‘doing all the work’ – therapy, medications, exercise, diets, breath work, energy medicine, mediation, herbs, journaling, mindfulness, affirmations – you name it, I’ve probably tried it. And instead of finding ‘the answers’ and instead of finding that I was ‘healed’ I would find that I was still overwhelmed, overstimulated, anxious, panicky, obsessive-compulsive, overly emotional… And I just wanted to know why.
And I was willing to put myself out there once more to find out what that answer was. I felt like if I didn’t ask one more time, I would never feel like I could get closure to my questions.
In 2020 we moved back to Australia. My relative had been seeing a doctor who specialises in working with autistic adolescents and adults. And I began to think about asking him to evaluate me. I was really afraid to approach evaluation with him, mainly because I would feel so foolish if I was wrong. What would he think of me? I have a core wound around feeling stupid or foolish and this was putting me in a very vulnerable place. And maybe even worse that that would be going back to believing that it was my fault that I was ‘so messed up in the head’. That I just hadn’t done enough to be okay. And I didn’t know how I would cope with that sort of outcome.
In the end, I gathered up my courage (even though on the inside I was thinking ‘oh, fuck, what if I am wrong and he thinks I’m an idiot’?!?) and asked if he would consider evaluating me.
And the answer wasn’t an immediate yes or no. He told me that he was going to be reviewing requests soon, and that I should send an email describing why I wanted to be evaluated and that he would consider all of the requests he had received and would let me know.
While I couldn’t take a definite yes from that answer, I was spurred on by the fact that it wasn’t a definite no. He didn’t indicate to me that it was a crazy notion.
I decided to write the email, which you can find in the next post in this series: Diagnosis Series: 2 – My autism assessment application.