TRANSCRIPT 🔗
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Welcome back to Quietly Autistic at Last, where we explore life through the lens of late-diagnosed autism, ADHD, and AwDHD, especially in women.
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And through personal reflections, research, and practical strategies, we talk about masking, burnout, relationships, sensory needs, and learning to build a life that honors who you are.
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I'm your host, Dr.
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Allison Sukamelli.
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And today I want to talk about a sentence that might explain something you have spent years trying to communicate.
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Knowing how to do something and having the capacity left to do it are different things.
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Knowing how to cook does not mean you have enough energy to prepare dinner tonight.
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Knowing how to clean does not mean you can manage the kitchen after a day that has taken everything you had.
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Let's not even mention the rest of the house, or even the cleaning schedule you've printed out and only lasted a day following.
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Sometimes you need someone to take something off the calendar, off your plate, off the list of tasks you are buried under, despite your resistance to falling behind, not being lazy, or are capable of doing.
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It's just that your capacity is shot one day, then it becomes one week, one month, and so on, until it feels like there is no catching up no matter what you do.
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And when you try to explain to other people, family members, friends, a significant other, it can be surprisingly difficult when people see you as capable.
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They tend to lack understanding, the capacity piece of the pie, when they see you going to work, see that you are getting or have gotten an education, the way you articulate yourself in most circumstances, your creativity expressed in hobbies, or other responsibilities that you continue to meet.
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They simply see all the evidence that you can in fact do things and complete tasks on a regular basis.
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Or so it seems from the outside.
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I've mentioned this time and time again in previous episodes, but it also feels like when we try to communicate the cost, the toll of doing these things for our capacity of continuation, that is what they don't see or not quite grasp when we clearly express that we don't have the capacity for X, Y, or Z right now.
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Maybe we did a day ago, a week ago, a month ago, but not right now.
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And real quick, please note this episode is meant for educational and reflective purposes only, rather than individualized medical advice, mental health treatment, or job advice of any kind.
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If exhaustion is severe, persistent, or affecting your ability to care for yourself, you deserve professional support.
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Please reach out to your primary care provider, a licensed mental health professional familiar with autistic, ADHD or ADHD adults, or an occupational therapist who supports adults with daily living needs.
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You don't have to wait until you're in crisis to ask for help.
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Your experience is valid and does not have to align with someone else's experience, even if they too are neurodivergent.
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For now, let's start with a familiar scene.
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You come home, maybe you've spent the day teaching, working in an office, managing customers, caring for someone, or trying to get through appointments.
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You walk into the kitchen, there are dishes in the sink.
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And let's take a moment to dissect what's honestly and transparently going on in my kitchen for a moment.
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Not only are there dishes, the dishwasher door is wide open because I was in the process of loading it when I apparently got distracted by something.
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Maybe it was the phone, an unfamiliar sound outside.
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Maybe a creative idea popped into my head and I needed to write it down or go find a book that it connects to.
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Also, I decided to do some of what I thought would be simple redecorating.
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So I've been painting walls and doors and moldings, so there are rinsed paint brushes and rollers and smaller paint brushes drying next to the sink on a plate, not to mention paint splatter in the sink.
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It'll rinse off, but it just adds to all the stuff that is going on in the area.
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And that's really vulnerable of me to share, but it's real.
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But I'm supposed to manage relaxing on the weekend with that mess that, yes, I created on my own, which was supposed to be creative relief, but any sort of home improvement, even if it's as simple as painting, always grows and gets out of hand, which it did, of course.
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And this is an attempt to have my personal sanctuary intact and ready for me to escape to after work.
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But I'm supposed to manage those activities, force myself to relax on top of all the things dancing around in my head for work next week and all the unnecessary demands that come with that.
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It just doesn't work out.
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Not ever.
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And there is food in the refrigerator, sort of.
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It's the end of the month.
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There's laundry somewhere between being washed and
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being put away.
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Let's take an honest look at that.
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There's laundry in the bedroom from weeks ago that hasn't been properly put away.
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There's a clean load in the dryer waiting to be collected and put away.
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There's a load in the washing waiting for me to start.
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A pile on the floor in the bedroom waiting to be sorted, and a pile near the washer and dryer on the floor that has been sorted and ready to rock.
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But the math isn't mathing, or should I say, the time isn't timing.
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So in cases like this, you know what needs to happen.
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You might even know the most efficient order.
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And still you stand there like I do because knowing the steps does not make the energy appear.
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And then comes the second task that we may not even be aware of at times: explaining to yourself why you are struggling.
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You did all of that at work.
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Why can't you do this?
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It's just dinner, it's only a few dishes, it's just another load of laundry.
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You're an adult, you need to be adulting.
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And before you even touch the sink, you are carrying the original exhaustion and the judgment about being exhausted.
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I know I'm not a lazy person, so what's the problem?
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Today I want to make some room between those two things: original exhaustion and the judgment about being exhausted.
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You may have a real support need.
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It is not some sort of character flaw.
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When someone asks, can you cook?
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the answer might be yes.
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I personally enjoy cooking when I have the time, a clean kitchen, and the capacity to do so.
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But the simple question, can you cook, leaves out almost everything that determines whether dinner will actually happen.
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Can you cook after a noisy day?
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Can you cook after several nights of poor sleep?
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Can you choose a meal, check the ingredients, tolerate the grocery store, prepare the food, and manage the cleanup?
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Honestly, I haven't been to the grocery store in over five years due to panic attacks.
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I think that's in another episode you've probably already heard.
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And can you cook dinner repeatedly while also meeting your other responsibilities?
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And what happens afterward?
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Do you have enough energy to eat, shower, talk to someone you love, or enjoy being alive in your own home?
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For this conversation, I want to clarify that a skill is something you have learned.
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Capacity is what you have available to use that skill under your current circumstances.
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And this is a way of describing experience rather than taking some sort of clinical test.
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Capacity helps us ask a better question.
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Instead of only asking, can I do this?
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We can ask, what does doing this, fill in the blank, require?
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And what do I have available today?
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You might be able to cook a lovely meal on Saturday afternoon and find making toast difficult on Thursday evening.
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And that difference does not automatically mean you are inconsistent, dishonest, or unwilling.
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The circumstances changed.
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So did what was available to you.
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And sometimes you can complete the task, but the cost is too high to keep repeating.
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You get dinner made, then spend the rest of the evening unable to engage in a conversation.
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You clean the house, then have nothing left for the following day.
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And sometimes that means having nothing left for work and all the responsibilities that come with that, like tolerating an unnecessary meeting that could have been an email.
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Somehow you meet every deadline, but your sleep, meals, and relationships absorb the consequences.
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And while finishing tells us something, it does not tell us everything.
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Often competence makes support harder to see.
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And there's a particular kind of loneliness in being seen as the person who can handle things.
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People may be accustomed to your competence because you have figured it out before.
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You're a hard worker and you've pushed through before to make things happen.
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But eventually your effort becomes invisible because the result looks familiar.
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You keep delivering.
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So people assume you are managing, and perhaps you make the same assumption about yourself.
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If I'm still showing up, it can't be that bad.
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But showing up and being well are different measures.
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And imagine a woman who gets through her workday, answers questions, solves problems, and sounds perfectly composed.
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Then she comes home and eats whatever requires the
least preparation.
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She postpones laundry again.
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She cannot tolerate another phone call.
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She spends the week in recovering enough to repeat the week.
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From the outside, someone might describe her as doing well.
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On the inside, she may feel that her life has become a narrow space between demands and recovery.
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And this is just an example, not a description of every autistic woman.
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Again, every experience is unique and valid, even if it doesn't fit your own.
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But if you recognize yourself in the examples, I want you to notice something.
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The fact that you have protected your work responsibilities does not prove that the rest of your life is adequately supported.
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Your home matters.
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It's your sanctuary.
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Your nourishment matters.
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And having enough energy for something you enjoy matters.
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You deserve more than being able to remain useful, even if being useful spans a variety of contexts.
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And it's okay to need help and to ask for help.
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You do not need to wait until every responsibility has fallen apart before you say that.
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It's important to note that saying I need help does not always mean teach me.
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You have the skills, maybe not the capacity for the moment.
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And this is where well-intended advice can miss the need.
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You say something like, I'm overwhelmed by making meals.
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Someone sends you some recipes to try.
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You say, I cannot keep up with the house.
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Someone suggests a cleaning schedule.
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Well, you already have one.
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What you don't have is the daily capacity.
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You say there aren't enough hours.
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Someone recommends a productivity app.
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Sometimes those suggestions are useful.
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Sometimes the person has accurately identified a knowledge gap, but sometimes you already have the recipes, the schedule, or the app.
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You clearly understand the task.
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What you need is less work.
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Perhaps you need someone to prepare a few meals.
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Maybe you need help cleaning the bathroom.
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Maybe you need another person to take full responsibility for a specific recurring household task.
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There is a meaningful difference between helping someone learn to carry a load and helping carry it.
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And we should be able to ask which kind of help is needed.
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And here is one way to say it.
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I know how to do this, I'm struggling with the amount I'm carrying.
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What would help is having someone take over part of the task.
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Or something like, I appreciate the suggestion, another system would take more energy to manage right now.
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I need practical assistance.
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And for someone who loves you, I'm telling you before I reach a crisis, I need us to change how this work is shared.
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Those sentences may feel uncomfortable, especially if you learn to make your needs small, reasonable, and easy for other people to accommodate.
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But a clearly stated need gives someone a chance to understand what is happening.
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You do not have to promise that the help will make you more productive.
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Being less depleted is a worthwhile outcome.
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And for some of us, asking for help with ordinary tasks brings up shame.
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We imagine a housekeeper is something we should only consider if we have a certain income, a certain lifestyle, or a disability that looks a certain way.
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We fear it may come with judgment since we appear capable to clean.
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But the question you are trying to answer might be, how can I continue working and still have enough energy to feed myself and live in a reasonably managed home?
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And that is a practical question.
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It deserves a practical response.
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And there can also be grief here.
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Grief that something you once managed has become harder.
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Grief that you have so little time after responsibilities.
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And frustration that you may be expected to explain all of this while already exhausted.
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And we need to acknowledge those realities without turning them into what feels like another assignment.
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You do not have to find the perfect attitude toward burnout before receiving support.
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You are allowed to be upset that you need help and still accept it.
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You are allowed to want things to be easier.
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Maybe start by identifying what would actually relieve you.
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Here are a few practical possibilities.
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These are choices to consider, not a recovery checklist.
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You do not need to do all of them.
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But start with one question.
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What keeps costing me more than I can currently afford in energy?
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Be specific.
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Everything may be the honest answer emotionally, but if you are trying to arrange help, a narrower answer can make the next step clearer.
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Perhaps the biggest problem is the dinner and cleanup cycle.
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Maybe it's changing the bed sheets.
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Perhaps it's making phone calls during business hours, text or email, please.
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Perhaps the house feels unmanageable because several demanding tasks always land on the weekend.
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Choose one recurring pressure point.
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Then ask what kind of change would address it.
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Would it help to do it less often?
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To make it simpler?
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To share it?
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Pay someone if that is financially possible.
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Ask about funded assistance.
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Or remove a standard that no longer serves you.
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For example, clean clothes do not necessarily need to be folded.
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A meal does not have to be cooked from scratch.
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And this is something I need to change.
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But the other layer to that is that I also want to eat healthy again.
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And a guest does not need access to every room in your house.
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And I'll be honest, my rule for this year is no guests.
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My home is my sanctuary, and even the most well-meaning guests can shift the energy of the home, or oddly, at least I find it odd, they tend to touch and move things even if they don't mean to.
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Same thing goes for my classroom, which is my sanctuary at work, even though I share it with a rotating group of 36 people every hour for eight hours.
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I don't like having a sub because they sit at your desk, they touch your things, move your things, and so on.
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And I know they've gone into my desk because my middle drawer that was organized falls out if you open it too far and all of my things are disorganized.
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Well, and the kids always tell me too.
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But it's just a lot for either sanctuary to have someone else in your space.
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The purpose in all of this is to make a distinction between what protects your well-being and what you have been doing because you feel you are supposed to.
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And when you make
requests, make them small enough to understand and complete.
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Generally saying, can you help me more can be difficult to act on.
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Try naming the whole piece of work.
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For example, could you handle dinner on Tuesdays, including deciding what will eat and cleaning up?
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Or could you take responsibility for washing and changing the bedding each week?
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Or could you bring me a meal on Thursday that I can heat and eat?
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Or could you make this call with me and help me write down the next steps?
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Notice that these requests describe a useful outcome.
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They reduce the amount you have to coordinate.
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Where possible, agree on the details once, what needs doing, when, and what counts as finished.
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That can be especially helpful if uncertainty or having someone in your space adds stress.
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Hello, welcome.
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That's me.
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You might need fragrance-free products.
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And I get this one now.
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I had a friend at work who claimed to be assaulted anytime someone sprayed perfume or axe body spray in her classroom.
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And I have the same students now, and I get it now.
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Not only are they spraying it, the scent stays in the room.
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And other details with specifics to consider.
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You might want belongings left in familiar places.
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You might prefer written communication.
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Receiving help should leave room for those needs.
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And if the help offered does not match the problem, you can say so kindly.
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You can try saying something like, having company would be lovely another time.
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Today, what would relieve me most is someone doing the dishes.
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We also need an honest conversation about access.
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When someone says just hire someone can be painful advice when you cannot comfortably afford it.
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Even a small amount of paid help can be out of reach.
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And in California, programs such as IHSS and Regional Center funded supported living can cover certain household assistance for eligible people.
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And these programs have separate eligibility and assessment requirements.
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And an autism diagnosis or burnout experience alone does not guarantee coverage, and they are not automatic housekeeping grants.
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And if you do pursue
that route, describe the functional impact honestly.
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Explain what is happening with meals, household tasks, and recovery.
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Explain what you manage only by sacrificing other essential needs.
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You do not need to exaggerate.
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Be more useful than simply telling them that the resource exists.
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Of course, I'll leave links in the episode bio.
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And for people without access to paid or funded help, the options may be imperfect.
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A friend might make an extra portion when cooking, a household member might take over one task completely, a non-essential commitment might need to end.
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None of those options removes the larger problem of inadequate support.
00:22:30.960 --> 00:22:36.640
If you cannot find enough help, that does not mean you have failed to ask correctly.
00:22:37.599 --> 00:22:39.680
And suppose someone does help.
00:22:45.119 --> 00:22:46.480
What happens next?
00:22:46.720 --> 00:22:47.680
Do you rest?
00:22:48.000 --> 00:22:53.119
Or does your mind immediately search for another task to justify the assistance?
00:22:53.359 --> 00:23:00.640
You may think things like, I should use this time wisely, I should catch up, I should finally organize that drawer.
00:23:00.880 --> 00:23:03.920
You may decide to do something useful with the time.
00:23:04.160 --> 00:23:11.359
That is your choice, but consider allowing some of the energy saved to remain available to you.
00:23:11.839 --> 00:23:13.920
You are allowed to sit down.
00:23:14.319 --> 00:23:16.240
You can enjoy a show.
00:23:16.559 --> 00:23:19.119
You can spend time with an interest.
00:23:19.359 --> 00:23:26.559
You can have a conversation because you want one rather than because someone needs something.
00:23:27.039 --> 00:23:30.720
You can experience an evening with a little more room in it.
00:23:30.960 --> 00:23:35.839
You do not owe the person who helped you a display of productivity.
00:23:36.480 --> 00:23:42.079
And if their help lets you feel less overwhelmed, it has accomplished something.
00:23:42.559 --> 00:23:47.680
And if rest brings guilt, you do not have to resolve the guilt before you rest.
00:23:48.000 --> 00:23:55.279
You can notice it, you can recognize the old expectation, and you can stay on the couch anyway.
00:23:55.599 --> 00:24:00.880
You don't need permission to rest or prove that you earned rest in some way.
00:24:01.440 --> 00:24:04.319
You can simply just rest.
00:24:05.519 --> 00:24:14.559
And for the people listening who want to help, if an autistic woman in your life tells you she is depleted, consider starting with curiosity.
00:24:14.960 --> 00:24:22.480
You may want to ask her something like, would you like me to listen, help you work something out, or take a task?
00:24:22.799 --> 00:24:25.599
Then listen to the answer.
00:24:25.920 --> 00:24:30.079
Don't assume what someone else needs based on your own needs.
00:24:30.319 --> 00:24:37.039
If she asks for practical help, offer something concrete that you can reliably provide.
00:24:37.839 --> 00:24:43.200
Avoid making her prove her need by listing everything she has failed to do.
00:24:43.519 --> 00:24:48.400
Avoid using her best day as the standard she must meet every day.
00:24:48.720 --> 00:24:55.680
And if you are surprised because she seems so capable, let that surprise update your understanding.
00:24:56.160 --> 00:24:59.839
She may be capable, but she also may need support.
00:25:00.240 --> 00:25:03.200
Those things can be true together.
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Reliable assistance can be quiet.
00:25:06.400 --> 00:25:23.039
It can look like remembering the agreed task, following through without repeated reminders, respecting how she wants her space handled, accepting that a brief thank you may be all she has energy to offer that day.
00:25:23.359 --> 00:25:26.720
And support does not have to be dramatic to matter.
00:25:26.960 --> 00:25:30.240
And here's a gentler question for the week ahead.
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You can think about it now or return to it later if you want.
00:25:35.039 --> 00:25:43.359
But the question is, where am I treating knowledge as proof that I should have unlimited capacity?
00:25:43.920 --> 00:25:49.759
And maybe your sentence is I know how to keep a home, so I shouldn't need help.
00:25:50.079 --> 00:25:55.759
Or I have managed this for years, so I should be able to keep managing it.
00:25:56.079 --> 00:26:01.279
Or I can do difficult things at work, so dinner should be easy.
00:26:01.599 --> 00:26:04.319
Now try adding the missing information.
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I know how to keep a home and I'm currently exhausted.
00:26:09.680 --> 00:26:14.960
I have managed this for years and I need to reconsider what it has cost.
00:26:16.000 --> 00:26:21.759
I do difficult things at work and I need support with what remains afterward.
00:26:22.480 --> 00:26:26.480
See whether that fuller sentence feels more accurate.
00:26:26.799 --> 00:26:30.000
You do not need to use it to win an argument.
00:26:30.319 --> 00:26:34.319
It may simply help you speak to yourself with more honesty.
00:26:34.559 --> 00:26:41.200
Then, if there is room for one small action, choose something that reduces a demand.
00:26:41.519 --> 00:26:56.400
It may be one request, one easy meal, one task shared, one expectation reconsidered, or one conversation with a professional about exhaustion that has become severe.
00:26:56.799 --> 00:27:00.559
It does not have to transform your whole life to matter.
00:27:00.960 --> 00:27:07.920
So knowing how to do something and having the capacity left to do it are different things.
00:27:08.319 --> 00:27:12.160
You can understand the steps and still need assistance.
00:27:12.400 --> 00:27:17.920
You can care about your home and be unable to maintain it at the level you want.
00:27:18.400 --> 00:27:23.759
You can value your work and need a life that leaves more room for recovery.
00:27:24.079 --> 00:27:28.720
You can be proud of your independence and welcome reliable support.
00:27:29.359 --> 00:27:35.279
And I hope we become more comfortable asking what helps a person live sustainably.
00:27:35.599 --> 00:27:38.000
What allows her to eat regularly?
00:27:38.240 --> 00:27:41.680
What gives her an evening she can actually enjoy?
00:27:41.920 --> 00:27:46.880
What helps her keep going without repeatedly exhausting herself?
00:27:47.200 --> 00:27:50.880
And I hope we learn to hear, I need some help.
00:27:51.119 --> 00:27:54.720
Well, there is still an opportunity to respond gently.
00:27:54.960 --> 00:28:03.920
Before the crisis, before the collapse, before she feels she has to explain herself one more time.
00:28:05.440 --> 00:28:07.200
Okay, so there you have it.
00:28:07.359 --> 00:28:08.880
Until next time, this is Dr.
00:28:08.960 --> 00:28:10.240
Allison Sukamelli.
00:28:10.720 --> 00:28:20.000
You are allowed to tell the truth about what you have left in you in terms of capacity, and you are allowed to ask someone to help carry what comes next.
00:28:20.240 --> 00:28:23.599
Take care, and I will see you next week.