(or the controversial issue of Neuro-divergent self-diagnosis)
As a teacher, we are involved in the diagnostic process of pupils with a neurodivergence such as ADHD or ASD; this process from our role primarily involves completing tick sheet questionnaires to define how pupils respond to certain situations.
Early in my teaching career, I had my first experience of completing one of the forms (the first of many), and as I went through the characteristic behaviour questions, I recognised traits in myself (even though as teachers we do not complete the analysis, some of the questions make it clear which behaviours and responses are considered neurotypical and which are the ‘neuro-spicy’ ones). Upon seeing these traits in myself I carried out research and had a go at the Autistic Quotient assessment online – I definitely scored closer to the control group of diagnosed Autistic participants, than to the neurotypical group – I have since discovered that the old AQ assessment was geared towards the diagnosis of boys and men (which I am not) and it is widely recognised that women and girls on the Autistic spectrum present in different ways.
So, I have self-identified as Autistic for around thirteen years and had two to three years of suspicion before that. In the last year, I have begun to wonder if I fall into the ‘AuDHD’ range.
I have not yet pursued a formal diagnosis for a few reasons – primarily, the fear that I will not get it and then I will have to face the fact that I am just broken, compounded by the fact that I have had a number of health challenges the last few years which have made it a) hard for me to consider going through the diagnostic process, and b) an awareness of how many overlaps there can be between ASD traits and trauma / anxiety responses (I have had my fair share of obstacles to overcome in my life, but this is not a therapy session 😊 ). And then there’s good old ‘imposter syndrome’.
I should clarify – I have suspected myself of being autistic for the last decade or so, but I can recognise traits going back into my childhood. Traits such as friendships out of my age group – food texture sensitivity, a poor understanding of social cues, and more that again I won’t list due to this not being a counselling platform 😊.
A contributing factor to my imposter syndrome was that I had not perceived myself to have had any meltdowns or stims; nor was I able to identify how I mask. I have managed to disabuse myself of any of those perceptions over the last year or so, seeing where I have very clearly had more than one meltdown, and seeing how I do mask, I have been trying to see how I can unmask but I am finding it very hard due to still feeling like an imposter – there are many people who agree that self-diagnosis is valid but there remain a large number of people who disagree – this makes it hard for me to say ‘I am autistic’ and start to break down my walls.
So one question I continuously ask myself is this: children start their diagnosis journey when the adults in their lives notice their differences (which can sometimes be challenging to live/cope with), as an adult, my mother is not going to write a letter to someone and say ‘I would like my adult offspring assessed for autism’ so really, for adults self-diagnosis has to be a valid start to the journey. It does help when other adults can see the traits (difficult as late-diagnosed people usually mask very well), as this can help to validate the self-diagnosis – especially when those adults are informed and educated about autism.
The other challenge I have faced when discussing this with peers, is the lack of understanding about why I do want to get a formal diagnosis. I have frequently been asked why I need the label as it won’t change anything. However – it will aid my mental health to know that I’m not broken; I was made this way. It will also help me to gain the accommodations in my interactions with my hospital support team that have been quite challenging to gain these as yet and one thing I truly struggle with is unexpected changes or developments, one example is after my first surgery I was invited to an appointment to discuss the pros and cons of radiotherapy vs chemotherapy. When I attended the consultation appointment it felt sprung on me that it wasn’t going to be ‘vs’ it was a 'first and then' situation. This led to a meltdown as I hadn’t been under any impression that this was a possibility. Forewarned is fore-armed is a very appropriate saying for me – if I can prepare myself mentally, I can process challenges appropriately.
I have done this my whole adult life (as soon as I was taking responsibility for changes in my life) I plan ahead; mentally, I plan for as many situations as I can (which is, as it sounds, exhausting) do that I will not be surprised or let down.
As of the date of this blog, I have still not begun the journey of getting the formal diagnosis in the pipeline – I still have too many ‘things’ to juggle and do not have enough ‘spoons’ to go through a new medical process.