By Heather L. E. McKay
This is a somewhat complicated topic for autistics who also have ADHD. As we already discussed in the previous blog; autistics with ADHD tend to have an inner battle going on with regards to routines, schedules, reminders and especially with forming habits; whichever side wins will either help or hinder the individual depending on the circumstances. But before we get into that, I’d like to point out the difference between a habit or routine and a schedule as this seems to confuse many people when they are trying to help an ND person to do a task or make things simpler.
Schedule: A schedule can be a set of instructions (in any format- eg: picture/ visual, verbal, written, body doubled etc), or it can be like a calendar of reminders that can trigger PDA, or actually help – depending on the person and the need v’s their struggles (remember that PDA profiles don’t like to be told what to do and when – so a schedule might be the opposite of helpful for these people). A schedule can be something that is hung up in the bathroom (like a visual process of how to brush your teeth and hair), or it can be a timed “Alexa”, or “Sirri” (watch or other AI generated) type reminder that tells you what to do and when or any other type of alarm or anything that helps you to stay on cues and timings.
Schedules can be extremely helpful for many ADHD’ers, especially if we have poor memory processing or are unmedicated, or are overwhelmed more than usual so that our brains are overrun and simply can’t sustain or control our memories or retrieval of memories. But schedules can also be useless if we forget to set the reminder, or turn them off, or are overwhelmed and burnt out from the constant demands and all the reminders.
Too many schedules and reminders become like white noise to us. If you’re an ADHD’er like me, who hates mess, and yet you need things on display in order to remember them, you might find lots of schedules and reminders truly annoying. When you get overwhelmed, the mess also piles up and spreads all over the house. This is when those things that are left out to remind you to do them get lost in the clutter. A helpful book for this issue might be “How to keep house while drowning” by K C Davis.
We often need those visual cues because of a thing called object permanence, and possibly poor short-term memory, or poor memory retrieval. But if you have too many visuals – they get lost. This is why too many schedules or visuals can actually become a huge problem for us.
It’s amazing how many ADHD’ers will say – one of the things that they hate about therapy or therapists, is that they’ll say things like: “Have you got a schedule?” or “Do you have a diary and a good routine?” or “You need to create a routine and make it a habit”. This is a huge ableist red flag and shows that the person does not understand ADHD at all. Sometimes our schedules and routines are the things that hurt us the most, but if we could stick to a schedule or a routine – then we wouldn’t be ADHD in the first place.
I don’t know how many diaries that I have lying around the house that have been used for the first 3 days of the year – and then never again. I can’t tell you how many “to do” lists I’ve written, and then lost and then started a new one. Or the amount of scrap pieces of paper laying around as reminders to do things. I tend to get all excited about a new notebook, or calendar or an app and then dump it because it doesn’t work for me, or I simply forgot about it. It’s the same as hobbies – I can’t tell you how full my house is with all the hobbies I bought and never actually did. It’s my kryptonite; and to tell me to get a schedule or form a routine (or even set a budget) to ‘overcome it’ is highly triggering to me and completely unhelpful.
I not only thrive on chaos most of the time, I also hate being confined by schedules or routines, and my own list of things to do become anathema to me. I’ll tell myself I have to do X, Y and Z tomorrow. But if I get a or b done instead, which didn’t need to be done at all and wasn’t on “the list” I’m ecstatic but also heart broken at the same time because I feel like I failed myself. So, someone telling me to get a schedule and stick to it, or to find a good routine, or just concentrate – is like telling me to fly… but also shaming me for being unable to fly at the same time.
Routine: What’s the difference between a routine and a schedule you ask? Well, most might say absolutely bloody nothing= they are the same thing. But to an ADHD’er they are totally opposite because of the “Habit Forming Conundrum” (HFC).
To an ADHD’er a schedule is like I’ve written about above – a task, list, a calendar, a visual process, or a reminder. A routine is a habit that becomes second nature – you do it automatically without thinking – it’s something you do because you do it the same time every day and don’t need a reminder/ schedule to tell you to do it – or how to do it. It’s an abstract thing that just occurs because it is part of the rhythm of the day. But a routine is something that is always out of reach for me, because even my ‘routine’ doesn’t look like a routine to a typical person, and to an autistic or OCD person – it looks like a complete and utter $hit show.
A routine to me is something I have to force my brain to remember to do, how to do it – and in a particular order – or it doesn’t happen. For a more typical person – it (apparently) just occurs – eg: they get out of bed when their alarm goes off, they go straight to the bathroom and do whatever needs to be done – then onto dressing and breakfast, pick up their things and leave the house. And all of it is done without forced thoughts, without forced muscle movement, without arguing with yourself, and without having to physically force yourself to cue into your body. At least - that’s what I’ve been told that they do, I have no proof that this actually exists – because for me, this is bizarre, how on earth does a body/brain do that without pain and without force?
For me, when I hear an alarm – it’s not auto, it’s not muscle memory – I have to figure out what the noise is, why is it going off, why won’t it stop, and then I have to force my brain to figure out what the noise is asking of me, and whether my brain/body wants to do that thing – and how to do it – whatever it is. And then physically force my brain to send a signal to my arm or legs to go to the alarm and turn it off – and how to turn it off. Then I have to physically force my brain/body to think about and to send the signals to do every other thing after that – but while I’m doing each of those things, my inner monologue will interfere with the process, distract me and tell me to do other things that aren’t in a typical person’s routine. It will tell me that I didn’t take the washing out of the dryer yesterday, because yesterdays ‘routine’ was interfered with thoughts or other things going on. Or I’ll be too busy thinking about why penguins’ knees are bent backwards and hidden up high underneath all that fur – and I have to mentally shake myself all over to try to bring it back to the here and now and concentrate on my surroundings long enough to realise my interoception has been screaming for half an hour that I need to pee, and my brain is also trying to figure out where in my ‘routine’ I was up to. That’s why a visual schedule can help us – as we can try and look at it and try to remember “where was I in that ‘routine’ before I went and put the washing away, peed, and googled penguin knees. But we will likely never be able to do the ‘schedule’ in the exact order that it is printed in.
To one of my autistic family members, their routine is set, it’s rigid and is completely immoveable – it’s literally set in stone and cannot be changed, altered or deviated. If you try to mess with it – even a little – it ends in disaster, meltdowns and catastrophes. To another autistic family member; you can change it up a little, but only a little, with a little forewarning, explanations and delicate communication. For my ADHD family members if they have a routine, it’s hard to see, it changes from minute to minute, hour to hour – and sometimes it completely upsets the autistics in the room. We have to work around each other to live together. Every day, you can watch the ADHD’ers (like a documentary wildlife show) trying to fit into the ‘routine’ of the autistics, and it’s rather amusing, until it’s not. If you live with an unmedicated, or unidentified ADHD person you will probably understand this very well. The constant moving from room to room, the unsettled atmosphere, the indecisions, the changing from task to task can be unsettling at best, downright frustrating at others. My grandfather was described as a bee in a jar, and another member has occasionally been asked if she has ants in her pants.
Sitting still or sticking to one task or place/ one schedule/ a set routine can be torturous for some but perfect for others. But to an ADHD’er a routine comes with many struggles. One major struggle is remembering to do the task, or even what the task was, another is the understimulation from doing the task. And this is what can cause the Habit-Forming Conundrum. HFC is my worst nightmare, but it also makes me an unbelievably great person to have in an emergency. Because I struggle to make tasks into habits and therefore habits into a routine – I’m better able to change my mind, my task or direction easily, and can easily move into crisis management at the drop of a hat; unless I’m hyper focussing – and then all bets are off and you’ll see me go into meltdown.
The problem with HFC is that ADHD’ers often have no/ or little ability to form any task into a habit.
To have or make a routine, you need to work backwards. A routine occurs when you do something often enough that it becomes a habit. The muscles in your body are supposed to do the task automatically without you having to think of it, and your brain controls those body parts automatically without having to force it – without conscious thought.
Now if you look back at my previous blog about inner monologues, you’d know that some of us can’t shut off that inner monologue- if you can’t shut it off – then there is no ‘automatic’ functioning. That inner monologue interferes with the auto functioning and causes the person to actually have to manually tell each body part what to do and how to do it and send each neuro signal manually to do that task.
This makes anything ‘automatic’ very difficult. We have to shut off the monologue and the racing thoughts to dial it back to hear the part of the brain/body that is trying to tell us that we are supposed to do a certain thing today at a certain time. If we can’t shut off that part – we won’t remember to do the thing, and we won’t be able to access our interoception to pick up on body cues that tell us to eat, sleep, drink, brush teeth and go to the toilet – and do all these things in a particular order/process. We literally have to force ourselves to focus on the task to be able to remember the thing, and then do the thing, and then – to do it properly in the right way/form/time etc.
When ADHD children learn how to use a toilet (potty training), they will need assistance. They may need timers, reminders, gentle pushes, body doubling and many other tools – but you have to remember that it’s likely that an unmedicated/ unidentified ADHD’er may never form habits because of the HFC. They may struggle for years to learn to master their interoception signals and to learn to listen to them instead of their inner monologues and racing thoughts. And even if they do manage to gain great control and learn to listen to interoception – a true habit – routine and schedule may be a constant struggle for them. It doesn’t mean they will be incontinent forever, or that they’ll never form some habits/routine or schedules. It just means that they will need additional supports and tools to help themselves throughout their lifetime.
Finding the right tool is paramount, but it also doesn’t mean that that tool will work forever. As I mentioned earlier, I change my tools (diaries/ notes / calendars a lot) because the understimulation that comes from using something as a routine can be completely dysregulating to me, but it also sometimes means that the tool loses its usefulness. Just like a new toy that becomes boring, a fidget that helped me to concentrate, won’t be able to hold my focus next week. I need to find new tools periodically (not rhythmically or on a set schedule – but instead – when I need to) – in order to help my brain to stay on track, stay focussed, stave off understimulation, and shut off the monologue and to cue into my own body and my own needs – like a hygiene routine, or a schedule at work or for studying.
Brown noise and some other tools have been known to be effective with ADHD’ers to help with the inner monologue, regulating, focussing and calming. Try an online search for apps or music that has the same/ similar effect if you don’t specifically like brown noise; there are a few Tik Tok, YouTube and other videos around that may help to find the right noise/music for your brain/body.
Other tools include:
- Adaptive tools that help with routines; toothpaste dispensers, auto nappy/ disposable continence pants disposals, open laundry baskets and open shelving – no more folding clothes or putting in specific drawers that need opening and closing.
- Remove steps in processes to simplify the process and therefore remove the need for so many neuro-signals to be sent to each body part to do each part of the task. Break the task down into parts and then see what parts can be simplified or removed altogether.
- Find a schedule setter (watch with reminders, calendar, AI like Alexa or Siri, diary or app) that works for the individual, if it doesn’t work – move on and find a new one – keep searching until you find one that works
- Find a good (neuroaffirming) Occupational Therapist that knows how to help with interoception and how to learn to cue into your body’s signals.
- Keep stimulation tools at the ready to stave off understimulation.
- Perhaps find headphones or a player that can deliver brown/white noise or similar music that can help to calm the mind
- Seek medical help with ADHD medications that perhaps aren’t working or don’t meet your needs
- Seek out other ADHD people that are going through similar experiences; it can help to have a support network around you
- If you are in burn out or overwhelm- consider using aides that will help, like continence pads, continence underwear or a commode next to the bed, or an additional area in the home where an incontinent person may feel safe to change or use a potty or commode if toilets have become too hard for them. Remember that SPD can also interfere with those brain/body processes and make any process so much harder – try to identify SPD triggers and remove them
- Injuries or illnesses can interfere with interoception or mobility as well, additional support may be needed during these times – like help to change or do certain tasks
- Remove or lessen demands – to give more space for the brain to listen to their body
- Add extra tools around the home to make it easier. Eg: add a bin to each room, add water bottles -for reminders to keep hydrated, but also for ease of access
- Check in with loved ones to see if they need additional help at any stage. Disabled people are trained to stop asking for help (more about that in another blog), but still need that help – so it’s important to check in occasionally.
Remember that a persons’ co-occurring disabilities will also affect their ability to process, do/or make a routine or habit. If they have co-occurring pain disorders or illnesses or other issues that affect mobility or physical/ mental functioning – then a routine is something that just might be impossible. I know when I’m having a fibromyalgia attack – no routine is possible for me at all. And that’s ok. We should never force ourselves to do anything that will cause more pain, will dysregulate ourselves, or force meltdowns or inhibit functioning further. Be kind to yourself.