As I mentioned in Diagnosis Series: 1 – My motivations for getting evaluated for autism,,,, I had gathered up my courage to ask my daughter’s doctor whether he would evaluate me for autism. I was asked to submit an email describing my reasons for seeking an evaluation. Below is the email that I submitted.
11 February 2021
I hope this is the correct email address to write to you at. As discussed at [daughter’s] last appointment I am wondering if you would be willing to see me to discuss my mental health history, and to see if you can help me determine whether my past and current struggles could be explained by a diagnosis of ASD. I have been told by practitioners (not ASD specialists) in the States that I am ‘too self aware’ to be on the spectrum, and in comparing myself to [daughter], I suppose it’s been easy enough to dismiss my own struggles when I was younger and just compare her with me now, after the benefit of many more years of life experience. I also hate looking foolish, so it’s hard for me to maybe be wrong about this. But here goes.
I was hyperlexic as a child, reading by age 3. But I was also highly anxious from the time I was a toddler if not before. Terrible separation anxiety. Terrible sleeper. Although I was labelled gifted and did quite well academically, the stress and anxiety of being at school made me feel quite ill at home, on the way to school, and at school. I’m sure the office staff had our home phone number memorised as I was constantly asking to ring my mum so I could go home. Since I was refusing to go to school my parents took me to see a psychiatrist or psychologist when I was in Year 1. At that time, they did diagnose anxiety and mentioned hyperactivity, but really didn’t do anything about it. If I was to describe my experience at school and out in the world, it felt like everyone else had received some rule book on how to be a child, and I just didn’t get it. Even when I was doing things for the gifted students, I felt like an imposter. I felt awfully out of place, and any new experiences or changes to routine set me into high stress meltdown or shutdowns.
As a young person I do recall being terribly afraid of speaking aloud in class, of fire drills, and of getting things wrong. I remember spending much time in the library, buried in books and felt as though the characters in the books were my ‘friends’ and that’s kind of how I learned to relate a bit more eventually. My mum tells stories of me having to match everything by colour when I would play with blocks and Lego. I loved making things symmetrical, and organising things. I was terribly fussy about what I wore.
I found ways to soothe myself such as counting the words that people would say in real life, or while watching television. I remember hiding under blankets when people came to the house. I remember how I loved to smooth out the velvet pillows at my grandmother’s house. As I got older, I found ways to ‘fit in’ enough, but in high school I just went back to spending as little time with classmates as possible, and much time in the library.
Up through my 20s I would bang my head on walls when frustrated. Through my 30s, I would self-harm by scratching and bashing myself when angry and frustrated. It was a goal of mine not to have a child until I could stop self-harming. Having [husband] in my life as a daily support has done wonders for me but I have continued to struggle with anxiety and depression. I have been diagnosed with both anxiety and depression, as well as panic disorder and OCD. Since I was a teenager, I have been on and off various cocktails of medication for anxiety, depression, panic attacks, and insomnia. I went without medications from 2002-2016, and after a back injury I took medications again for a couple of years. However, I have been on no medications since September 2018. I have had some adverse reactions to medications including paranoia and suicidal ideation, but I suppose at best they make me feel too numb and kill creativity and passion.
I still have anxiety and panic attacks, most of them focused on obsessive thoughts that there is something medically wrong with me. This has been a huge part of my anxiety presentation for the last 10 years, on and off. I have highly tuned in interoception about every bodily process, and I tend to ‘check’ to see if I am feeling something, and I re-trigger this anxiety often, and it will at times culminate in panic attacks. I avoid doctors. If I have to have any medical testing, I just do not cope. I have learnt (mostly) to avoid Dr Google too. I also worry about food contamination a lot more than the typical person. I tend to get very overwhelmed in family life, especially with unexpected changes, feeling like there’s too much to do, and I really don’t cope well with interruptions, noise, and chaos (which is hard to avoid with 2 kids who have ADHD).
I would appreciate it if you would consider seeing me when you have an opportunity, as I think that unpacking some of these things that I go through may answer some questions for me, help me understand and better accept myself, and perhaps find some strategies that I hadn’t considered.
I submitted that email, and then I didn’t hear anything. Weeks passed, and I was stressing about it. I started to second guess whether I had sent it to the correct email address. When my daughter had her next appointment on March 9th, I asked the doctor about whether he had received the email, and he said that he had and that he was currently reviewing all of the requests he had received and that he would be in touch once he finished that process.
On March 16th, I received an email from his office stating that the doctor had reviewed my request and wanted to invite me to book in for an assessment, which would consist of three appointments. I made my bookings for three consecutive weeks, but the first available appointment was for the end of May, so I had to wait about six weeks until the assessment began. But at least it had been booked in.
In re-reading that email, I am reminded of where I was when I submitted it. And in contrast, I am doing so much better now. But it’s been a long journey with a lot of ups and downs – some of which I will be discussing in the next post in this Diagnosis series.