I have both ADHD and autism. I had ADHD diagnosed at 29, autism at 37. If it wasn’t for Twitter self-advocates I never would have discovered I had autism. I’ll show you what the science says, and how it’s completely wrong, insulting, and how it may be affected by biases.
The Science of Co-Occurring ADHD and Autism
Firstly, it wasn’t until the DSM-5 published in 2013 that these were accepted as co-occurring. Before that you either were allowed to have ADHD or Autism, but never both. Some research prior to this time challenged this idea successfully.
The science is still extremely bad here. There’s little study done on adult ADHD and autism co-occurring, it instead focuses on children and adolescents.
I’ve focused my research on studies done since 2013 (which is when the DSM-5 was published).
What does the science say?
It focuses almost entirely on deficits.
When I looked into the study – one of the main things they noticed is that symptoms were more severe – children were more likely to have tantrums, over eat, under eat, have conduct disorders, have higher anxiety, and higher depression.
It was framed as though the children in this study were classified as having “moderate to severe” impairment.
I will list the things that are generally said about these co-occurring diagnoses in a summary list:
- ASD+ADHD were more likely to experience harsh parenting and maternal stress
- ADHD+ASD group had a significantly lower IQ compared with the ASD and ADHD groups
- ADHD+ASD were reported by parents as having more severe impairments in nearly all domains of adaptive functioning
- ASD+ADHD also have more severely impaired social awareness, social cognition, social communication, social motivation, and stereotypic behaviors and restricted interests
- ASD+ADHD have more sensory and motor deficits
- ASD+ADHD symptoms represent an “additive” effect
The problem with this research.
Masking – if all the symptom presentations were low masking as they appear to be – what about those children who have failed to be diagnosed ?
This is a glaring error of omission. Children with higher IQ tend to be far better at masking behaviour. So this research is all focused on the ones that were low masking cases of ADHD and autism.
The researchers also note that there’s very little research done on adults – where they did have one paper – it said that most of the deficits that were found in childhood for these children appeared to level out in adolescents. This indicates a developmental delay rather than actual deficits.
Why this hurts to read…
I don’t have these experiences. Almost none of this is familiar to me. I have been diagnosed with both ADHD and autism but nearly all of this doesn’t line up with my experience. I was successfully able to mask most of my behaviours until I suffered acute autistic burnout at 36.
Returning to the list:
- ASD+ADHD were more likely to experience harsh parenting and maternal stress – This one I can definitely say I experienced, it wasn’t intentional mainly – I was different to my older brother, he was a high performing student who was considered ‘gifted’ – I had to compete with this – a lot of this was unspoken, but it put unbelievable pressure on me
- ADHD+ASD group had a significantly lower IQ – without meaning to brag, this isn’t true of me. I have an IQ well outside the standard deviation. IQ is also a terrible racist measure and not that great at measuring intelligence, but I would be considered a genius by this measure – I don’t think anyone is a genius – categorising people’s intelligence is awful. Everyone has varied intelligence and everyone can offer something unique. I can’t do routine tasks – I am incredibly unintelligent at just daily functioning stuff. I am an “absent minded professor”.
- ADHD+ASD were reported by parents as having more severe impairments in nearly all domains of adaptive functioning – I had pretty good adaptive functioning. I managed to remain undetected throughout all of my schooling for both conditions.
- ASD+ADHD also have more severely impaired social awareness, social cognition, social communication, social motivation, and stereotypic behaviors and restricted interests – I am super socially aware, I have good social cognition, I have some pretty bad auditory processing issues which do make communication hard, I had amazing social motivation – I was pretty neurotypical in my social life, I don’t know about stereotypical behaviours – I have masked so much, and my interests compared to a lot of ADHD or Autistic people are way more varied.
My experience of ADHD and autism co-occurring
No two autistic people are the same, no two ADHD people are the same, no two autistic and ADHD people are the same. This is just my experience. This isn’t everything but it’s the main stuff I can think of right now.
- Time: I don’t experience time like other people. I often have multiple thoughts in my head at the same time, and I am living in the past, present and sometimes emotionally the future at the same time (I don’t envision myself as being in the future here).
I’ll explain with an example. I love cats, I have had pets throughout my lifetime – I have been privileged here immensely. When I pet my cats – at the same time I can be processing time in three ways:
- I am thinking about my past experiences while petting the cat
- I am also processing the sensory stuff in the present and I am feeling happy
- I am simultaneously experiencing the grief of losing the cat I am stroking due to knowledge of this and will be crying at the same time
- Memory: My memory isn’t sequential. I also don’t have any visual memory. I have aphantasia (no mind’s eye). I cannot play a sequence of memory out in my head – it’s all loose association.
In spite of this I have a pretty massive memory for stuff, but it’s not specifically detail oriented – instead my brain will categorise stuff like the Dewey decimal system almost – except this index is far more abstract. It’s also incredibly powerful – while I may not know everything about specific information – I will have stored how to access that information again – this can be page numbers, journal titles, google search terms, lyrics in songs, sequences of words to search, sequences of numbers.
It’s pretty awesome but it has a significant drawback also – there’s emotional indexing as well. And the categories associated with bad memories are far more complete. When I get anxiety or have intrusive thoughts – my brain will queue all the bad memories associated with this feeling to play in rapid succession. Because I have no concept of time, the emotions and feelings are as powerful as they were when I first experienced them. I can usually suppress outwardly displaying this emotion but the cost is anxiety.
- Executive Function – I am a sim. That’s the best analogy that I can give. Due to the vast amount of information that my brain is constantly processing (a lot of it utterly irrelevant), I queue up actions. Sometimes these behaviours don’t make sense to other people, e.g. I will walk around a table sometimes before I go to get something out of a draw – this is sort of an auto pilot mechanism. My brain knows that I need to do X but it’s already decided that it needs to do this Y list before it can reach that task.
This is the reason I think I have so many issues with auditory processing. I don’t have the disorder, I have no problems actually following instructions, and I can discern different sounds. The issue is that I am often either traversing information nodes when people are talking to me, or living in alternative timelines. That means that information is queued usually – I have found on my low executive function ability days that the delay from hearing someone to that information being processed is usually 5-10 seconds if I am not too disengaged from reality. This is frustrating as hell for people who know me, and for me also.
An example of this that is a frequent occurrence:
- I am processing a queue of stuff inside my head while not fully engaged in a specific task
- My wife asks me to do a task – I do not respond
- My wife repeats herself almost immediately
- The audio information from the initial task reaches my head
- I snap because I have actually queued up the task in my head, and I am processing the audio – her repeated instruction interrupts the audio processing and it makes me angry as I am usually about to start whatever she has asked.
- I have to moderate my response – but I sometimes fail – “GIVE ME SOME TIME”. I always immediately apologise – but I also internalise guilt.
- Socializing/Empathy – I am a hyper empath. I feel everyone’s feelings, I can “read the room”, I usually can work out when people have been harmed – I am not sure if this is a repeated trauma response that has made me this way or if it’s a byproduct of ADHD and Autism. The social deficits discussed earlier are not my experience. I was also able to mask eye contact issues incredibly well – but it’s so uncomfortable for me – and I don’t try to do it after burnout. Acting at school I think solidified my ability to mask permanently. I studied human behaviour constantly. I have never had issues befriending people.
I have issues maintaining friendships – mainly due to losing contact because when things are out of sight – they are out of mind, this goes for family as well as friends. (I do often think of people but they are fleeting node memories inside my brain and catching specific thoughts and actioning them is a lot harder.)
Neurotypical people seem to have friendship degradation mechanics – when I catch up with friends who I haven’t seen – it’s as though we’ve only last seen each other moments ago. They however are processing my lack of contact as a personal choice and resent me. Friendships are hard with neurotypical people – they attribute to malice what is usually out of our control.
- Sensory hell – I am pretty sure this is the one thing that is an additive effect. I hear, feel, see, and am bombarded constantly with sensory information. It’s also not uniform – I don’t hear everything loudly, certain frequencies and sounds are more piercing. Similarly my touch feeling is more amplified in certain areas. I have to have blue light filters on all my screens, I have to wear noise cancelling headphones. Doing anything like mowing the lawns is just utterly awful for me – loud, hot, grass is itchy, and I think about how it’s contributing to eco-destruction while I am doing it.
- Synesthesia – The one form of synesthesia I have is known as mirror touch synesthesia. It has some association with hyper empathy and autism. When people are touched – I feel that same touch. When people are emotionally hurt – I feel that emotional hurt. This synesthesia is very hard to deal with at times.
Here are things that I can’t watch without causing significant discomfort:
- Cringe comedy – think The Office (US), but especially The Office (UK). This embarrassment is directly translated into my own body – I feel all the emotions of the embarrassment, the cringe, I internalise the feelings. I have pushed through this a lot of the time, and it’s generally only when this is novel that it affects me – repeated viewings of the same material are uncomfortable but not the same
- Fail videos – I can’t watch these – it actually causes me the pain I see on videos. I feel everything. If I have personal experience of the pain – it’s far worse, when pain happens that I do not know of – I can empathise with how it must feel but it’s not as extreme.
- Social Norms/Laws/Morality – I have an extremely rigid moral code. I believe in being the best version of myself constantly. I believe that life should be in service to others. I hate everything that I perceive as unjust or a distortion of this morality. I hate it when people have rules they explain to me that are not enforced uniformly. As I learned critical theory in university, and with every understanding of new information – I hate society. I have always had a deep sense of unease with how I was treated in relation to other people.
Because I stand out – I am not able to mask when I am having low masking days and I can’t appear to be “busy” – this is an ethical violation for me – I have been targeted more frequently for distracted behaviour at work. I have a magnifying glass on me due to this. I also have a very low bullshit tolerance for bad management. I am usually made a target due to this. Egotistical or narcissistic style managers are my kryptonite in the workplace, and they all usually have the Dunning-Kruger effect – they are certain in their knowledge always and can’t be wrong. It’s so frustrating.
Because my code won’t allow me to do things that I fundamentally disagree with or I am not meeting my base need of helping people – I tend to either speak up at my own detriment, or I will leave employment that I have been good at.
This is compounded by Justice Sensitivity. Because my moral code is so rigid, and if I see people getting hurt or read about their experiences I will violate strict social rules, or norms in order to try and prevent that harm from occurring. When I went through burnout I did this. I was feeling everything. I try and prevent harm – I have no regard for personal safety in situations where I see harm occurring – the few times I have suppressed it – it’s eaten away at me until I either vent it out somewhere with a trusted friend or I have taken action. I can’t let injustice go.
- Pattern Recognition/Problem Solving – This is my area where I thrive. I am extremely good at bug fixing code as an example. I can take incomplete data from low information users and identify root cause problems. I can see patterns of meaning and I can identify the root issues. I can hone in on what is actually going on far better than some people. I am called insightful for this – but it needs to be something I am interested in – when it is imagine a computer with multiple cores each processing at full capacity to find a solution – I traverse abstract libraries of information looking for context and meaning – most of the paths are useless, but due to the speed at which this is done I can find “outside the box” ways of fixing stuff – because my brain doesn’t live in boxes.
- Routines – So I live in chaos, but I need routines. It’s a weird thing to explain. And routines are not based on time – time is my sworn enemy – I don’t understand it and it stresses me out. Instead I have set orders that things need to be done in. Things have a specific order and I can maintain that routine for an indeterminate amount of time – it could be infinite for all I know. The problem is that when a routine is interrupted – I implode. It’s so bad I often can never return to that routine. It’s not that I don’t want to return – I wish I could just get back on the horse, but it feels like something perfect in my life was ruined forever – I am walking on the grave of a good thing. I am dishonoring it’s memory. It makes me have anxiety.
- I need novelty and sameness – much like the previous category this doesn’t make sense in a lot of ways. I love trying new food, I will eat any new product that becomes available. But I also love eating only certain things – but here I can’t eat the same dinner two nights in a row. I have to have it varied. Varied sameness…
- Hyperfixation and Hyper Focus – I get hyper fixated on stuff, and I hyperfocus on stuff. I have so many interests and I know so much about so many things – my interests change almost daily, there are themes among them and things I always return to – but the idea that I only have one or two interests is totally wrong. The only limit to my knowledge is if I am uninterested in stuff. Otherwise I will consume it like Johnny-5 from Short Circuit. I think this is best described in a tweet I saw recently:
The downsides of this…
In order to survive a lot of the time, I’ve had to cut corners off who I am. That has meant letting things slide, taking on group attitudes that I disagree with and engaging in behaviour I don’t like. I know it’s wrong at the time – but I just internalise the shame to hide who I am as a person – I know causing conflict is rarely worth it – so I compromise who I am in order to be part of the group.
I have never been trusted by adults in my life. When I was a child I wasn’t great at masking some behaviour such as eye contact – this made me thought of as a liar – when I was assumed to be a liar – nothing I ever said was true. No one ever believed me – I had to become oppositional to authority to survive. This meant even with my parents – and even when they were telling me to not do stuff for safety reasons. I once touched a dead possum despite being told not to and I ended up very sick as I am pretty sure I was still sucking my fingers at this time. So… distrusting kids has bad side effects – educational settings are still ruining neurodivergent children – my oppositional defiance was due to needing to survive – it was a maladaptive coping mechanism.
I have also done horrible things in my past. I was friends with my bullies at school – and when they were not rubbing dog shit in my hair, giving me black eyes, and calling me ‘psycho’ – I used to tease other kids. BUT I HATED IT. I’d go home and cry for hours about how awful I was. Also when I didn’t know something was wrong or immoral I didn’t have a problem doing that thing. Teaching myself morality has been hard – some of the things done to me and that I did due to not understanding morality and being abused are constant ruminations.
I have been gaslight my entire life about my abilities – despite being intelligent, I found learning at school incredibly slow and far too prescriptive. This meant that I got bored easily – it meant I had bad grades – and I was constantly told that I was not living up to my potential, and needed to apply myself. It didn’t help that I am bad at math due to dyscalculia. I have terrible handwriting, issues with grammatical arrangement, and spelling due to dysgraphia. I was also sight impaired for an unknown amount of time until I got glasses at 14. So my achievement has always been far lower than I expected of myself. I have internalised a lifetime of feeling inadequate, despite possibly being adequate or above average.
I have rejection sensitive dysphoria now – I read more into what people say when it’s framed negatively than they usually intend – this manifests now as either anger and resentment of that person or shame and resentment in myself, sometimes both. I am slowly deprogramming this response – and being able to name it was one of the first things that helped.
I have underperformed at work due to not understanding how I needed to have accommodations made. Despite being able to problem solve really well – the thing that absolutely ruins me is when I am given vague tasks – where I can’t actually ascertain what people want. The worst part is when you ask them for feedback and they tell you that you are doing fine. Only to be hauled into a meeting shortly after to explain why you haven’t done the thing they asked that they gave you no information for and when you asked they said you were doing fine.
If I could describe my life pre-diagnoses this year – it would be these two words – Unwilling Chameleon. I have always been able to blend in, but the costs of this have been high. So high I nearly died last year.
How do I fix the science?
I am at the moment drafting up a research study on adult ADHD and Autism co-occurring. There’s no research that has been done on adults with an inclusive approach that allows for the research participants to also be involved in the study design themselves. I am looking to do this research as soon as possible. I am going to connect with all the dual diagnosis people with ADHD/Autism on Twitter, and where ever else I can find willing participants and work together on decoding this experience.
I am so excited to do this. I feel like rather than having an additive effect on shared symptoms it’s far more complex than that across people. Some traits appear to cancel each other out, some are additive, some exist at the same time – and we all experience this completely differently – there are spectrums of experience within these groupings.
If you fit these criteria (self-diagnosis using online scientifically backed tests for either ADHD or autism you don’t have a medical diagnosis for is also valid – there are barriers I know to getting these diagnosed correctly) and if you would like to be involved you can fill in this contact form.