Our perpetually messy house is triggering almost daily autistic meltdowns

[anothermother]

I’m having a really hard time with the extreme messes my oldest child (she’s autistic presenting with PDA plus ADHD—same as me) and my husband make.

I have four kids (10, 7, 4 & 3), but the messes my 10yo and my ADHD husband make outshine any others I have ever seen. Aside from the understandable feelings about living in a messy house, the real problem is the visual mess really overwhelms my very sensitive autistic brain-body and makes me extremely angry.

I find myself trying to stay away from home just because I need to escape the mess and then dreading having to return home even though I’m overwhelmed and exhausted from being out and about. I don’t get to enjoy recharging at home because of the mess—it’s like there’s nowhere safe for me to catch a break and refill my body budget so I’m constantly running on an empty tank

I’m at a loss. I don’t know how to help them learn to clean up behind themselves more consistently, and I simply cannot keep up with the daily cleaning up after 4 children, my husband, two cats and myself.

I am spending a frustrating amount of time being angry, resentful and overwhelmed by the mess.

I am having a ridiculous number of meltdowns as a result, which means I am consistently showing up as an unstable and irritable mama.

I don’t like myself half the time because I’m so so grouchy due to being so overtaxed by the clutter and mess.

Can anyone relate? Maybe someone has been there and can offer tips or tricks?

I do find some relief from angry cleaning, but that’s very unreliable since my PDA mostly makes me want to run the other direction or just curl up and shut down.

Rewards and consequences only make PDA worse, so I have no idea how to help my daughter clean up after herself and my husband is just as tricky. I know it’s not malicious but it is putting me in an almost constant date of fight or flight and my blood pressure has started spiking and I’m genuinely concerned for my physical health as well as my emotional health and the toll it’s all taking on the whole family

I have learned that my mood usually improves a lot if I can at least get the floors cleared and vacuumed, but I’m still always just teetering on the edge of my next mess-induced meltdown because no matter what I do, our house is just 5min away from the next catastrophic mess at any given time.

Ritalin only gets me so far. I’m so tired of living like this.

[WYMom]

I had the same problem and then I met minimalism. If you saw my house you wouldn't automatically think I'm a minimalist. As a small farm there are a lot of supplies we keep. However I drastically reduced our inventory. Toys, books, cooking implements, decorations. All reduced by at least 70%. It helps. Tremendously. They can't make as big a mess if they don't have the stuff to do it with. YouTube the minimal mom and go from there. It takes time too. I've been reducing for years.

[anothermother in reply to WYMom]

Oh, I intuitively was drawn to a minimalist lifestyle long ago because of my issues with clutter combined with my disgust for consumerism and “stuff.”

The problem is, some folx can make other level messes regardless of how much stuff they own.

For example, my biggest mess makers are also avid “collectors.” I regularly go through and just throw stuff away, but it’s never enough.

I honestly don’t even know how they manage to make these messes. It’s pretty mind blowing. Like, why is there spaghetti sauce on the ceiling when we are eating scrambled eggs and toast—it’s a mystery.

That said, I do genuinely appreciate you taking time to share what’s worked for you.

Being a PDA autistic combined with ADHD myself just adds to the dilemma because even though I’m not a particularly messy person, my ability to keep up with daily chores is very inconsistent. Im extremely avoidant of the boring stuff and when I’m stressed on top of that, it’s just a recipe for disaster.

At a loss but still searching for any little tips or tricks that might be helpful. Sigh.

[penn_adhd in reply to anothermother]

Are you able to stick to any kind of schedule? For me I make myself change the towels every Wednesday and Sunday because they start to smell. I don't have a schedule for many chores, but it's something that helps me keep from doing too much at once.

[BlueCherries]

i had the same issue but we only have 2 children and only 1 of them creates the mess. our house was eternally messy as well. my therapist told me to create house rules with the entire family and have it written and posted and it is written that my husband is responsible for enforcing the rules as well. having said that, i only managed to keep the house relatively in order when i stopped working... constantly reducing, constantly putting things away and constantly reminding the kids to put away things. they're better at it. do i feel better? i think so. still, my new plan is to find a part time job that will help me pay a regular cleaner. i think what i learned is that it helped to have someone help me sort through all my concerns and coach me on how to address and even then, it is a gradual process to explore what works and what doesn't. and in the process, we start learning how to communicate within the family. so, hang in there and get help from pros and/or family and friends.

[anothermother in reply to BlueCherries]

As soon as you tell a PDA person there are rules, the PDAer will think to herself “and rules were made to be broken!”

Nothing that works on non-PDA folx will work for the PDA person. We get by with “might/could do” lists instead of “to do lists” and “maybe” is our favorite response to any invitation.

I can fully admit we are probably very difficult to live with. Put more than one PDA person under the same roof and it can become very tricky very quickly.

I think I need to work on better managing my spoons. When my tank is less chronically low, I have a greater capacity to do the super un-fun chores that I wish I could just outsource. Alas, not only do I hate doing the chores, I have a hard time letting anyone else do them for me because they never do it “the right way” or to my standards. It’s so silly but also so very true.

We will figure it out. I’m sure we will. One way or another.

[Harnessinghope]

Good morning!

It looks like we share a same-age mess maker! LOL. I have been working on my ten year old for years on the messes. But it has not led to a sufficient change.

I also embrace minimalism, but I am a busy working mom with a job that requires a lot of my attention. A LOT. So minimalism is not a continuous thought for me. I do return to it once a month or so.

I agree with the possibly hiring a cleaner and explaining to the cleaner what you would like to see. Individuals/companies that clean homes can focus in on what you want done. So, if they do organization and leave the messes for you, you can do that. If you want them to do the messes and you do the organization, you can do that too. Just know there ie flexibility with that. ♥️

With that piece, the rest of the work lies within. Whatever you can do to either raise or lower the bar internally will be a tremendous help for you. I am with you. When I walk into my house and at least see the living room, kitchen and hallway fairly neat and vacuumed, I feel a sense of relief. I do tell myself between those soul-warming times that I will soon see them back to the way they should be. And I give my little mess-maker and more importantly myself some grace.

You are not alone. Please take care of yourself!

[MaudQ]

I’m sorry you’re experiencing this. Living in someone else’s mess is hard. I read a book called Organizing Solutions for People with ADHD that really helped me. It made it easier for me to enlist other family members to pick up after themselves. I don’t think my neurodiverse family is ever going to be totally neat and clean, but I’ve been getting better about pushing my kids to do more. It’s just too much for one person.

[anothermother in reply to MaudQ]

I read that one—it did have some helpful ideas. Some folx find it easier to tidy up than others. Not sure whether you’re familiar with PDA, but it makes doing boring everyday chores/tasks really challenging. I’m better able to keep up when I’m less stressed or overwhelmed, but it’s exhausting being autistic and my senses and nervous system being constantly overtaxed. I do know there are certain chores that if I can at least muster the energy to tackle those regularly it will at least make an improvement. If only my bedroom could at least be safe from their messes. Sigh.

[katcald]

Hey, I don’t have any solutions for you but I understand- when my house is a mess I am very stressed out. I want to ask you about your PDA - I think my 16 yo daughter may have it. She is currently being treated for anxiety and depression but still struggles to get motivate and refuses to anything we ask her to. She decided she is “done with school” and stopped doing her school work at the private school we transferred her to in January (at her request). She is angry we won’t let her drop out and get her GED. we have started to consider it but there’s no guarantee she will follow through when it gets hard. Anytime we say no to her she has a huge meltdown. How did you figure out you had PDA and what has helped you? We are at a loss.

[anothermother in reply to katcald]

Phew. That’s a loaded question. I would start by learning as much as you can about PDA. I knew right away that was the thing that finally resonates with me. It can be very confusing to be an autistic with a ODA profile because we generally present quite differently from non-PDA autistics. Harry Thompson is an autistic PDAer who wrote a pretty great firsthand account of growing up PDA. It’s called The PDA Paradox. He’s also given interviews on a handful of podcasts. The pdasociety.org.uk has some great info and links to good resources. Kristy Forbes has a blog and offers some small group workshops to help families touched by PDA.

As a an autistic PDAer, Inwould say that probably one of the most striking qualities about folx like us is we simply can’t be forced to something if we haven’t chosen it of our own free will. And even oftentimes we simply can’t do something we actually want to do because doing the thing is still a demand. Before I knew I was a PDA autistic, I just viewed myself as unapologetically free spirited. I have always rejected living a “mainstream” or “cookie cutter” life. It can be painful when the world doesn’t seem to accept you for being the unique person you were born to be, and this can lead to a lot of trauma, depression, anxiety and physical health problems.

We intuitively chose to unschool our kids, which means they make choices about how to spend their time and we impose very few (if any) expectations on them with the exception of aiming to treat others with respect and consideration while acknowledging and honoring their own needs.

I could try to offer more insight or share more about y experience, but I suppose I’d advise letting go of expectations and trusting your daughter to make her own decisions and just being supportive of that. If she’s PDA, she will likely dig her heels even deeper the more you try to push her to do/be a certain way.

And try to really see her—validate her experience by believing her when she tells you what she’s feeling, can or can’t do etc. The world tells us we should be able to just push through when the going gets tough, but if you are an unidentified autistic (possibly with a PDA profile) you will never be able to be anything other than exactly who you are. You have to learn that is not a thing to apologize for or feel ashamed about. It is so liberating to allow yourself to just be the person you have always been but who you’ve been told isn’t [“good”] enough.

I felt like no one truly saw me until I met my husband, and that was such a lonely and awful way to live.

[anothermother in reply to katcald]

I need to feel like I am free—autonomous. I absolutely HATE being told what to do. Autistic PDAers are intrinsically motivated. We can only do a thing that we are personally invested in and even then only as long as it doesn’t feel like a thing we *have* to do—even if it was self imposed.

If she was my kid, I’d say “sure. Get the GED.”

Some would argue (myself included) that school is arbitrary. There is so much to learn in this world. As many ways to design a life as there are people making up all of humanity. School is merely one way to go about learning things.

Ultimately, the greatest gift we can give each other in life is radical acceptance and unconditional love.

A PDA autistic person is hardwired to be the authentic person they were born to be. It is impossible for us to be any other way and it will feel like death to us to try and stifle that deep need to be free spirited, authentic ourselves.

[zatoichi1]

I understand you here. My wife grew up in a messy household and is completely comfortable with clutter. I didn't and it makes me feel like my life is out of control. Any attempt to get her to change has failed. I was able to upgrade a loft above my garage and I always keep it orderly. When I feel stressed about clutter, I relax in that room. It's been a difficult compromise for me. I hope you can find a reasonable solution.

[katcald]

Okay, but what if we let her drop out of school and she decides it’s too hard to get her GED and she doesn’t do that and she doesn’t get a job either? If we just let her sit around the house doing nothing (which she pretty much does now as she is not motivated to do anything) what happens when she turns 18 in 18 months and has to go out on her own?

[anothermother in reply to katcald]

Why does she have to go out on her own promptly at 18? Granted, she probably wishes to if she’s PDA because she’s probably yearning for autonomy.

What if removing the demand reduces her anxiety and depression so that she is better able to function everyday?

What if, when given permission to chart her own path, she uses her freedom to design a life so full of self love and self awareness that her inner light is finally able to shine on all those around her?

And what if she doesn’t get her GED? If she’s refusing school anyway, is she really in track to graduate? It sounds like it’s time to accept the likelihood that School is not the right environment for her.

There are many brilliant and productive people throughout the ages who had no (or little) formal training or qualifications. A high school diploma or GED offer absolutely zero guarantee of anything.

I think it is unfair to impose someone else’s values or ideas about what boxes we are supposed to tick off.

You can’t change who she is. It isn’t fair to demand or expect her to be the person you think she’s supposed to be instead of accepting her for being who she is.

This is her life. She knows herself better than anyone else. We all have a right to explore the world and make our own decisions and learn from them to make more decisions and so on.

I think it’s time you sit down and really think through your fears masking as “concern.” Your fears are limiting her potential. It’s time to trust her. And be there to support her free of judgment as she learns what she needs, what her strengths are, what feels authentic for her… Be ready to help her navigate obstacles instead of assuming she will fail.

What you should be most afraid of is that the pressure of trying to be someone other than who she is will break her spirit. The statistics about neurodivergent folx self harming are nothing short of tragic.

Maybe there are adults who like being told what to do and when and how, but most folx want autonomy—the same is true for young people and especially for those whose brains are autistic and PDA.

I’m sorry if this comes off as harsh, but as an autistic PDAer, I feel fiercely protective of the right of neurodivergent people to be treated like the whole and capable humans we are.

[katcald in reply to anothermother]

I appreciate your honest feedback. We are cool with letting her chart her own path but know her life will be easier with a diploma or GED. And my husband feels that if she’s not in school when she is 18 she needs to move out.

[anothermother in reply to katcald]

But you don’t actually know that her life will be easier with a GED or diploma.

What if your daughter’s path doesn’t include either?

I’m not suggesting that those pieces of paper don’t hold the keys to open certain doors, but who is to say those doors are meant for her? If you’re truly open to her forging her own path in life, you must also be open to whatever course that path takes.

Life is about the journey, not the destination.

The trauma, however, from being bullied into doing something that either isn’t right for her or simply isn’t right at this time in her life could have very damaging lifelong consequences. And I highly suspect that is how she is experiencing the demand to meet these specific expectations—as being bullied to do something that she simply can’t do—even if she might also believe you are coming from a place of “concern” (note: concern is really just a different way to say fear).

Also, I’d like to point out there’s no due date in life by which time she must have obtained a GED.

It’s possible she will need a period of de-schooling in order to recover from some of the trauma she has already experienced before she’s ready to face the next obstacle.

That said, it’s equally possible she will rebound very quickly as soon as the demands of her current school are lifted and move forward in life with a force like you haven’t yet seen due to the removal of constraints (ie limitations) placed on her by the formal school environment.

Regardless, don’t we all deserve to live life at our own pace?

I’m sorry for the challenges you’re facing together as a family. I know it’s scary when something or someone comes along and challenges so many of the “truths” you’ve believed for perhaps your entire life. But that’s exactly what parenting an autistic PDAer will do if you are open to learning from what your daughter is trying to teach tou about her experience and herself. I suspect many folx would even argue that parenting in general will do that…

Asking questions and being open to the answers you get is a great place to start, so you’re already doing the work 💛

[anothermother in reply to katcald]

A podcast episode you might find helpful on creating a meaningful life & career paths for autistic folx: two-sides-of-the-spectrum.s...

💛

[anothermother in reply to katcald]

I feel like one of the best things you can do to support your daughter, which you obviously want to do or you wouldn’t be here looking for ideas and help, is start learning about actual autistic experiences by reading/listening to firsthand accounts of autistic folx.

Our paths VERY OFTEN will not resemble the “normal” path, but that doesn’t mean our path in life is less valid or less satisfying FOR US.

💛

[anothermother in reply to katcald]

Harry Thompson’s book The PDA Paradox might be a good place for you to start. He’s also given some interviews as well as contributed to some great online resources for PDA that you could check out until you can get ahold of a copy of his brilliant book. He was the guest in episode 23 of Two Sides of the Spectrum (there are lots of other great interviews on this podcast including others specific to PDA).

And you might want to check out pdasociety.org.uk. There’s so much helpful info there as well as links to other many helpful reaources.

[penn_adhd]

What is PDA?

[anothermother in reply to penn_adhd]

Demand avoidance… the P officially stands for pathological; however, a lot of folx (myself included) find that word problematic and prefer to think of it as pervasive, or my personal favorite pervasive demand for autonomy.

It’s a subtype of autism.

To answer your question above, as soon as I feel like I have to do something (in a particular way, at a set time etc), I immediately feel a rebellious need to not do the thing or if I’m feeling particularly anxious, I’ll feel obliged to burn down the whole “system” (ie routine).

That’s not to say I don’t benefit from routines; I do—they greatly help reduce the anxiety overwhelm that results from having to make lots of tedious little decisions and numerous transitions and so on. It’s just that, routines make me feel trapped (like in a claustrophobic kind of way) and can send me into a panic or just cause me to say f*ck it, throw in the towel (pun intended 🤪) and shut down altogether.

[GeorgeMandom]

I hope things have improved for you since. I stumbled upon this today while researching for resources to help adults with PDA+Autism and have not found anything that could help people I know.

3 years ago, my girlfriend and her blended family moved to live with me. There were 7 autistic adults with PDA. I tried my best to help them while working late nights at a full time job and keeping my home clean. I burned out very quickly and found out about their PDA the hard way. Needless to say, our relationship was broken beyond repair and I am catching up with my own self care. I still care about them but understand my limitations as a caregiver. I’m trying to find free resources for cleaning that may help these 7 adults.

My gf is getting old and has new significant health issues so being the sole caregiver for the 7 adults has become too overwhelming. If you have found free cleaning resources, please let me know.