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Dahlia Daos's avatar

I love this so much and it is exactly what I needed.

It makes so much sense. I have "rules" for things I don't do, and it's the only kind of internal boundary and way to disengage from damaging behaviors but i never thought of it as a way to deal with my demand avoidance. Thank you so much🥰

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Sam Galloway (she/her) 💕's avatar

Hi Andreea, I’m so glad it resonated with you! It’s all so complicated and baffling. I posted then hid because overwhelm and PDA. I just can’t make sense of myself but I’m so glad that I feel less alone knowing that it’s just a part of the way we make sense of world 🥰

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Dahlia Daos's avatar

Honestly sometimes the only way I get things dome is by springing into action without thinking about it. Don't ask me how, because I don't know.

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Sam Galloway (she/her) 💕's avatar

Whatever works, while it works! 🌪️

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Suzanne ter Huurne's avatar

Interesting article! I had never heard of anti-goals. I may try using them. Or, I may stop setting regular goals 😉

The idea of letting go of self improvement is a big one. Wow. I have hurt both my body and mind trying to improve or even maintain a status quo. I have no wish to continue doing so, or it might kill me. Last year has been all about accepting I really can't do a regular or volunteer job anymore. But I still feel shame about it and a pressure to improve, contribute to society and all that. It would feel great to have that weight lifted off my shoulders.

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Sam Galloway (she/her) 💕's avatar

Hi Suzanne, I agree that even the thought of dropping commitments can be intimidating and shame inducing. How would you feel about considering that may be due to internalised ableism? Therefore it’s not your fault you need to let some commitments go - perhaps only temporarily - and that it’s also not your fault you’ve been socialised to believe you should, can and must do it all.

I know what you mean about goal setting potentially killing you. I don’t have much OCD, but what I do have is bound up in diet culture entrenched from my childhood. I told my doctor that I must not weigh myself anymore or risk obsessing and losing my life to calorie counting, measuring myself, tracking and forcing exercise beyond my capacity. I asked her for just general rules and she said, “Eat enough protein, eat enough carbohydrates and eat enough vegetables”. Even I can manage that! 😹

A gentle reframe can make all the difference.

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Suzanne ter Huurne's avatar

Yeah I know about these obessions 😅 I will often obsess for like a week or two, then decided to stop the madness. But I have learned some things to do or avoid from stuff like calorie counting and watching video's about physical exercise etc.

I meant the killing thing quite literally, I've had cancer a couple of years ago and I really do think being chronically stressed, having had traumatic experiences and going beyond my mental, emotional and physical boundaries for years have contributed much to that. Autistic people tend to live shorter than average in general.. but I do really do wish to live to be an old wise woman 🙂

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Sam Galloway (she/her) 💕's avatar

I’m sorry you’ve had to go through cancer and hope your treatment is going well.

I know what you mean, people talk a lot about how stress causes chronic and acute illnesses. It’s hard because it’s how we are wired, and yes our life expectancy shorter as autistics compared to the general population. It’s an outrage really, and should be properly investigated through public health.

I’m planning to write a post on longevity and autism at some point; I’ve been really obsessed with longevity research and Blue Zones (long before Netflix, ha ha!), the Shazadis brain doctors, Dr Lisa Mosconi etc. Trouble is, that’s surely all based on neurotypicals.

There is a major lack of research into aging and autism. I’m interested in the concept of “healthspan” versus “lifespan”. I think we really lack societal awareness of how the autistic/neurodivergent mental-healthspan is extremely limited. Even if we do get extended years to live, where is the research into optimising our quality of life as an aging neurodivergent population?

That’s not targeted at you, I’m just theorising and wishing things were already set up for us to age well in a society that puts financial resources into our longevity and wellbeing…

I’m sure you have lots of excellent ideas and wisdom on this though! Let’s hope we all become older and wiser together 🥰 ♾️

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Julia Gandrud's avatar

That sounds like a post I need to read :) I've assumed I have 15 more years, max - until this week, when I decided I'm living to 100 so I can be happy with all my late blooming

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Sam Galloway (she/her) 💕's avatar

Woohoo, glad to hear it! 🥂

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Molly Kerr's avatar

This article resonated with me, too. However, I feel like anti-goals aren’t tricksy enough for me. I don’t respond well to people (including myself) telling me what not to do either. If I said, “Never pick up your phone after 11pm,” I’d do it to defy myself. But reverse psychology is ineffective, too. I just do it if I want to. If I say, “stay up late scrolling so you’re tired tomorrow,” I’d go, “Mission accepted!” Maybe I have Opposition Defiant Disorder, instead.

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Sam Galloway (she/her) 💕's avatar

Hi Molly, same here! I am not sure about the ODD thing. I have heard it is a label given dismissively to the "naughty" kids who deserve more support and compassion. But if it feels like a good fit for you, that's cool too! I can't stick to my own rules either. I just promised my family I would cook dinner thirty minutes ago but there is more dopamine to be had responding to you than cooking... 🤷‍♀️ 😆

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Molly Kerr's avatar

OMG this was me last night! I tried to stop sewing, I even turned off my sewing machine. But then when I went to pack away the quilt I saw it was "so close" so turned the machine back on and finished the quilt. Dinner was late but at least that quilt isn't hanging over me anymore, questioning my ability to see things through to completion!

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Sam Galloway (she/her) 💕's avatar

Yay, glad you got it finished!! 🪡

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Hayley Futter's avatar

I have the exact same thought. Like my brain is going "oh no, I see what you're doing, you can't trick me!" I do have the demand avoidance for sure though. Now that I know what it's called I can look into it further at least!

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Sam Galloway (she/her) 💕's avatar

Yay, it’s so glad to identify and name it!

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Simone's avatar

Yeah I’ve never understood setting goals and have never been able to take them seriously, not even at work. I prefer to think in terms of directions and making incremental changes that move me in a direction. Goal setting is too rigid, it fails to take into account external forces that are completely outside of our control and at its worst can lock you into patterns that are no longer healthy for you.

On the wardrobe thing though, I hardly ever throw anything out. I have a shirt I bought at high school (just turned 56) and the leather jacket and docs I bought immediately in leaving and two jerseys I knitted about the same time. I don’t wear the jacket that often but it has so many memories I’d never let it go. I’ve always felt that way about my clothes… as a child I gave my clothes names. My weight fluctuates also so this year I finally lost a significant amount of weight so that I can finally wear clothes I haven’t been able to wear in five or six years. If I’d thrown them out I would have had to replace them all. I’ve always felt that the throw away culture is feeding the fast fashion beast.

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Simone's avatar

As a follow on thought… it’s that time of the year when I have to review my goals, do a self assessment and then in a few weeks set new goals. Has anyone successfully proposed a different model that works for them to their HR and if so would you share it?

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Sam Galloway (she/her) 💕's avatar

I wish I were the right person to advise, ha ha! I am still reeling from a drop in oestrogen due to patch shortages in Aotearoa NZ. Anyone else keen? :)

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Sam Galloway (she/her) 💕's avatar

Yes, I totally agree. My family kindly pass clothes onto me, and I pop into charity shops and grab items as and when. Otherwise I probably buy items in a shop maybe once or twice a year? So I don’t have anything coming in at all 😹

I’ve put on a lot of weight with perimenopause and can’t fit a lot of items so they are hanging there waiting. Now I am walking on crutches so getting very little exercise. Eating for comfort. Trying to mitigate it all. None of it is straightforward, is it?

Naming your clothes sounds amazing!! I am totally like that with my teeny tiny little toys and model making 💕 🧸

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Iona Olive's avatar

I needed better words for this so badly. That traditional goal-setting has never and may never work for me and it's not because I'm just an undisciplined person who is "less than" others for whom this stuff does seem to work. So much shame is baked into just the fact that I wrote that as "traditional goal-setting" smh

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Sam Galloway (she/her) 💕's avatar

Sorry, I have just come back and found comments that I didn't get notifications for. Are you okay? Neuronormative goal setting is ridiculous. If I can maintain my own personal hygiene and feed the kids, I am winning! I bet you're doing great! Don't let the braggers get you down 🏆

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Dahlia Daos's avatar

Also, I'm not perimenopausal, but my period always comes wiht significant emotional dysregulation and complete lack of executive functioning. If I get randomly super sad out of nowhere or just angry, it means my period is coming. What actually works for me is atomoxetine - and I've been finding that increasing my dose for that week actually helps a lot.

I'm AuDHD too and I've been an ambulatory pharmacy for most of my adult life. Which is its own kind of hell. I hope your mood stabilisers work out.

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Sam Galloway (she/her) 💕's avatar

Thanks, Andreea. Fingers crossed! 🤞 💊

Have you looked into PMDD? It co-occurs with neurodivergence for many people who have periods. From my experience, it can get really bad really quickly - and unfortunately I’ve only been diagnosed retrospectively and after my periods stopped (due to a Mirena IUD and Zoladex).

I had no idea I had alllll these issues until perimenopause, then they all decided to destroy me at once 🙈

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Dahlia Daos's avatar

I have looked into PMDD and it seems like a reasonable fit. For the longest time it was impossible to tell because my baseline was instability and being sad as fuck. Have yet to do anything about it though 🤷‍♀️.

Perimenopause seems awful. Nature really fucked us over.

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Sam Galloway (she/her) 💕's avatar

It is a train wreck waiting to happen for so many autistic women and AFABs. Horrendous. Nobody knows to tell us. There should be a welcome pack along with our diagnoses! If you are pre-peri or still early days into peri, it's worth getting informed and supported ASAP. Things can go downhill rapidly 😭

But hopefully you will sail through!

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Dahlia Daos's avatar

Welcome pack lol. Still waiting to receive the manual for being human!

Yeah, it’s on my list of health stuff to do as soon as I can make plans to leave my house with some reasonable confidence I’ll follow through.

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Sam Galloway (she/her) 💕's avatar

OMG the manual. Where to begin?! All the manuals are NT centric, and they intuit it all anyway then think we aren't trying hard enough!

My ADHD meds have worn off. I need to step away from the laptop before I start ranting and raving 😆

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Lavonah Landon's avatar

This is FASCINATING. I’m a coach who helps people improve their health and I need to reread it. I need a whole book on this concept. This could be helpful for a subset of people who I work with who find goals to be super hard to work with. THANK YOU for writing this.

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Sam Galloway (she/her) 💕's avatar

You are so welcome! I don’t know of a whole book on it sorry, but you might want to read the resources I linked to in the end of the article. I am writing a book on autistic perimenopause so I should probably mention this concept in there too, ha ha!

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Alex Ry's avatar

this is blowing my mind. thank you sm for this.

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Sam Galloway (she/her) 💕's avatar

You are so welcome! Apologies for my delayed response! Asynchronous communication at its best/worst on my end..!

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LindaJay's avatar

I’m so glad I came across your article. I’m also ND, but I’m struggling to find help for my 15 yr old son also ND. I haven’t found PDA support for him. Please, if y’all have any recommendations send them my way. For now, anti-goals will be something that I will try.

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Sam Galloway (she/her) 💕's avatar

Hi LindaJay! I am so sorry, I haven't had notifications about comments here and just found loads. Argh!

PDA: Kristy Forbes is amazing. Esther Jones. Naomi Fisher. There are lots but my ADHD meds have just worn off for the day! Let me know if you have come across any of them before :)

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LindaJay's avatar

Hi Sam! No worries I understand. I’m not so new to Substack and I’m not familiar on how to find stuff here either. 🙃

I will look up the names you shared, I haven’t heard from them before. Thank you!

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Sam Galloway (she/her) 💕's avatar

You’re so welcome! Let me know how you get on. There was also Harry Thompson but I think he got himself cancelled within the PDA community.

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Al's avatar

Wow! Thank you. This makes so much sense, and in some way I knew this was what I was doing, and yet couldn’t figure out why - or more importantly - how to stop.

So, I’ve been fighting myself because of the I made. Self sabotaging every step. Still successful in most people’s eyes, but not anywhere near the lofty heights my creative brain has dared me dream, then banished me from achieving! Ugh.

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Sam Galloway (she/her) 💕's avatar

It’s such a minefield when we look like we are doing so well, but the social masking takes up so much energy that we can’t reach our stratospheric potential. I wish I had the answer 😭

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Shawn Conn, LCSW's avatar

Interesting piece. Seems like “anti-goals” work by negative reinforcement (the laptop & Scrivener - LOVE THAT PROGRAM! - example) or specific boundary setting and values identification (I won’t mask around my neurokin/ I won’t allow others to use me).

Do you think making them conditional statements would be effective too? Or do they need to be cut and dry declaratives to be the most effective? (Using “don’t do…” and “you can’t do…” vs “When you do, then you can do…”)

TIA!

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Sam Galloway (she/her) 💕's avatar

Hi Shawn! I’m not doing well at the moment with any expectations, self-imposed or otherwise 🫣

I don’t think if/then statements work for me at all. I always need to cut straight to the incentive. I read somewhere that ADHDers need the reward upfront, and I guess that could relate to the perception of time being Now vs. Not Now as opposed to any sense of time flowing.

When combined with my PDA autism, I can also defy achieving any goal I’ve set myself. For example, I’ve not looked at Scrivener in over six months. Because I want to write a book, and therefore I can’t.

In fact, I’m having major issues writing anything at the moment. I think it’s because the world feels like it’s about to collapse and I am just scared. That triggers all my demand avoidance.

I’d love to know if and how you are able to get around those issues though. Any tips welcome!

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Shawn Conn, LCSW's avatar

Get around which issues? The world feeling like it’s collapsing?

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Sam Galloway (she/her) 💕's avatar

I don’t even know. My brain is a bit mushy at the moment, sorry! Menopause is seriously messing with my head 🤪

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The Solitary Rebel's avatar

I can't challenge you on fallow times, it may be the one thing society is suffering the most from I think; being productive All the time, not wanting to age, trying to live forever, cry out every fall how you wish it were summer again, disregard the medicine of the season of death and decay and germinating....it is So valuable to create space for that in your life....that said ...mood stabilizers...oh glory...after struggling hard af for years I'm more than thankful and unapologetic about having them aid me feel solid ground...🙏 Counter goals ftw

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Sam Galloway (she/her) 💕's avatar

Hi, I’m so glad mood stabilisers work for you! I had the opposite effect unfortunately. They are usually sedating but I experienced insomnia with them. Classic autistic nervous system defying the medical norms 😹

Where do you live? I’m in Aotearoa NZ in the middle of winter and feeling the fallow period hard! 🥶 😹

I can’t motivate myself to do anything…

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The Solitary Rebel's avatar

And I have terrible insomnia too, ever since I was a child, I have help with that too, now...

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The Solitary Rebel's avatar

Hey.. that's rough if it doesn't help...it helps me with my tristimania..a late diagnosis...I couldn't believe how glad I was that tomorrow is another day when I adjusted 🥲 like..every day...🥹

I'm in the Netherlands, so summer here, and hot, but that requests a different kind of fallow, I don't do so well with summer, as I work seasonally, I have allowed myself to go fallow in winter and allow that it's just different things that happen now...

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Dawn Bankers's avatar

Love this idea of flipping the reward on its head & rephrasing goals to anti goals.

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Sam Galloway (she/her) 💕's avatar

Thanks, Dawn! I’d love to know how it works out for you 😊

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Clementine's avatar

You understand me.

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Sam Galloway (she/her) 💕's avatar

We are so alike! Amazingly unique, yet never truly alone.

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Marie's avatar

Just happy to have found you! Struggling with all the health things in full blown peri and I am audhd and was feeling v isolated and down on myself. Was asking the universe for some autistic/adhd/nd/afab advocacy/pride, and found you through Weave. Hello fellow peri warrior! Though I feel more like a husk of former self right now... not a warrior haha

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Sam Galloway (she/her) 💕's avatar

Hi Marie! You are in no way alone! There are so many of us, but I think we are all so jaded that we don't even have the words to put to a lot of the awfulness befalling us in ND midlife. Oh to feel like a warrior rather than a worrier, ha ha!

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Billy Marie's avatar

Thanks for sharing this with all of us Sam! I don't think I had heard of anti-goals before your article. Wow, they sure make a lot of sense to my brain.

Basic survival skills are often a struggle, especially the eating and drinking ones I've been working on lately. I feel like I've been on the cusp of discovering anti-goals, but this really codified and supports my budding idea. Somehow it is so much easier to think about "not getting dehydrated" than it is to "drink enough water." Same thing with food and meals.

Anyway, thanks again for sharing this. I love all the delightfully divergent brains I meet on here!

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Sam Galloway (she/her) 💕's avatar

Hi Billy Marie! I’m so glad it’s been helpful! Even anti-goals are too much of a demand on me right now, but it’s good to know they be utilised again at some point.

Hydration FTW! 🧊🙌

(I can’t find a glass of water emoji!)

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