Disclaimer: This is the first in what will probably be an ongoing series of extremely self-involved brain dumps. They may not reach anything resembling a point but are instead a way of me thinking out loud and trying to codify things about me that bug me (and employers, family members, partners, pets etc) in hopes of fumbling towards greater self knowledge. That established, onwards.
WTF is going on in my head? It’s a question I ask all the time, and despite various diagnoses and theories, it’s hard to pin down the causes of my various behaviours. What’s more, is the cause even that important, can I deal with the behaviours without getting to the root of them?
To begin at the, um, middle: I was diagnosed autistic in 2019, and ADD in 2022. That means I lived 47 years on this earth without knowing for sure that I was quantifiably adrift of ‘normal’ in a way that could be labelled, diagnosed and understood. Increasingly it seems this knowledge is the key to understanding pretty much my whole life.
A note on language
I prefer to say that I am autistic and ADD rather than I have autism and ADD. This is a wholly personal choice and reflects my feeling that these qualities are intrinsic to me and are not things that I ‘developed’ or ‘contracted’.
I describe myself as ADD, because hyperactivity has not been a feature of my behaviour for a very, very long time. ADD is considered outdated these days and has been officially replaced by ADHD but I’m going to use ADD because it’s my brain, so there.
Autism
Family matters
I am a link in a chain.
My father has long asserted that he is ‘a little bit Aspergers’; I have long countered that ‘little bit’ doesn’t even come close to covering it.
His father was an autodidact and engineer with a passionate lifelong special interest in art, the products of which adorn my walls to this day; I am confident that he was also on the spectrum but he lived in an era when knowledge of autism was almost non existent, certainly in terms of our modern understanding of it.
My son has been diagnosed autistic, and has some very clear traits that give me complete confidence in this diagnosis. My daughter has not been diagnosed autistic, but other diagnoses have swirled about her, none quite hitting the spot – I am quietly confident that as she ages, and as the medical profession gets its act together with respect to presentations of autism in women and girls, she will be.
Why the emphasis on familial hereditary traits? Because as I will explain, there are alternative explanations for what I jokingly refer to as my weird head, and I think nailing the right cause is helpful in coping.
My diagnosis
I was assessed by a psychiatrist on the NHS – I only had to wait a few months for my assessment after I applied. My son had to wait years and we eventually ended up borrowing money to get him privately assessed. Both of us, however, were assessed by the same practice.
Mr Andrews has social communication problems, rigidity of thought and sensory difficulties that are consistent with ASD. He furthermore has developed some mental health difficulties over the years which seems to surface sporadically when he is confronted with stressful circumstances. Mr Andrews states that his social communication difficulties have had a significant impact on his education and career. He often will tend not to be equivocal or anything other than frank, or other than factual in his communication with other people. This straightforwardness and candid responding can at times be misinterpreted by other people as being rude or as a naivety or bluntness. He also has a low frustration tolerance, especially in situations in which he feels misunderstood. His need for ‘sameness’ has been regarded as being inflexible.
From my autism diagnosis
Although I was only seen by a pre-assessor and then the assessor proper, and the assessment took only a couple of hours, I got the impression that they both very quickly concluded that I was autistic as all holy get out. I am confident that the diagnosis was accurate.
ADHD
Family matters
My father and mother are definitely not ADD, but I am, and both my children have received diagnoses.
Has it spontaneously arrived in my brain? I don’t know, but I am confident that I was born this way.
My diagnosis
For some years prior to my autism diagnosis, I was confident that I was ADD to my very core. When I received my autism diagnosis, I felt, for a time, that this explained my weird brain. But as time went on, I began to feel that autism alone was not enough to explain certain behaviours.
I sought a diagnosis through the NHS, and after an interview, a self reporting questionnaire, and a questionnaire filled in by my ex-partner, I received a diagnosis.
This was not as clear cut as the autism diagnosis, though, because my ex felt, in good faith, that the behaviours in question were better explained by other things, so she scored me lower. Nonetheless, the diagnosis was given.
(Bizarrely, it was rescinded a few months later when the doctor who provided it was fired for not being rigorous enough and I had to undergo a repeat assessment process, whereupon it was reinstated.)
During the assessment, Scott described longstanding difficulties in most domains of ADHD: attention and concentration and memory difficulties present. Poor in completing projects, lack of organization, avoids starting work tasks, makes careless mistakes, poor attention, poor concentration, misplaces objects, easily distracted, difficulty relaxing, abrupt in conversations
In terms of attention and concentration, He reported that he always had some degree of difficulty focusing on tasks.
He finds to this day that his thoughts go off on a tangent, becoming focused on things other than those which he should be paying attention to. I also gather from him that he tends to be forgetful. He described his mind as busy, ‘messy’, wandering, difficult to switch off and relax. Scott also reported getting easily distracted and struggling with organizing day-to-day tasks. As regards impulsivity symptoms, Scott admitted that he can say and do things impulsively and makes important decisions on the spur of the moment.
The difficulties mentioned above have impacted on several areas of Scott’s life, such as his job, family relationships, finances, and emotional wellbeing.
From my ADD diagnosis
My type of ADD is commonly called Inattentive, and combatting it in order to achieve any damn thing is a constant, draining struggle.
The wild card – trauma and boarding school
But here’s the problem – a lot, an awful lot, of the behaviours that look like ADD and autism, can instead be responses stemming from extreme trauma, especially in childhood.
I have heard it argued that to be an undiagnosed autistic is, by its very nature, to be traumatised because growing up like that is impossibly difficult.
Aside from just being weird-headed in an era when it was barely recognised, what trauma am I referring to? Well, I was sent to boarding school just after my 8th birthday, and that was only the final trauma at the end of a year that had seen my parents’ relationship completely break down, my father have to endure long recovery after a near fatal car crash, and a day when I witnessed my beloved grandfather succumb to a massive stroke right in front of me.
1980 was not a good year for me and all my certainties and safeties were stripped from me one by one until I was abandoned in a dormitory full of strangers presided over by men who were at best emotionally damaged, at worst outright abusive.
So am I suffering from what is often referred to as Boarding School Syndrome? You bet I am. And that makes it incredibly hard to unpick innate traits from trauma responses, which in turn makes it hard to decide how best to address the behaviours that hold me back and make my life difficult in so many respects.
AuDHD
In summary, I am autistic, ADD, and traumatised, and somewhere in the venn diagram crossover of those three things lie the explanations for the difficulties I experience (and create for others).
To make things even more difficult to unpick, the interaction of autism and ADD is virgin territory because until a decade ago they were considered to be mutually exclusive.
Research into the ways they interact, and understanding of the experience of being both things at once, is hard to come by. It is a rapidly emerging field and honestly, the best place to find out about this is on youtube and tiktok, where a variety of people are chronicling their self investigations with humour and insight. Not exactly clinically rigorous and evidence-based but, for right now, peoples testimonies about their lived experiences will have to do.
Lucky me, to be at the bleeding edge of the neurodiversity movement.