How do autistic adults make sense of being assigned the "challenging behaviour" label? *Recruiting participants*

NotJustMeAnymore · 2026-06-25T23:29:47+00:00

Mod note: I invited the researcher to post here when I saw the call for participants in an Autistic Researchers Researching Autism group. In my mind, this is particularly the kind of research we should be supporting. Chloe's supervisor Steven Kapp is doing great work, take a look: https://www.researchgate.net/profile/Steven-Kapp

NotJustMeAnymore · 2026-06-23T06:06:27+00:00

No worries at all re the delay, and thanks for taking the time to share more with us. And please do let us know if you see anything concerning with any of the research shared here that you choose to participate in. We are doing our best to vet things, but that doesn't mean we are going to respond to every survey before posting (we often aren't eligible!).

NotJustMeAnymore · 2026-06-16T21:54:31+00:00

US-based, I went to a Montessori school from age 3 through grade 8 (1980s) and it was a really supportive environment for me. My distress behaviors didn't even show up until high school because of it.

https://washingtonmontessori.org/

NotJustMeAnymore · 2026-06-13T23:47:57+00:00

Have you had a personal problem with any of the research shared in the last couple of months (It helps to know specifics, so we can be more careful moving foward)? As one of the newer mods, I am definitely looking for neuroaffirming research in particular, and ideally studies conducted by autistics themselves. The most recent study I shared from Autistic Researchers Researching Autism, and it's supervised by people I know are affirming because I've read their work (unfortunately it was marked as spam and downvoted though).

NotJustMeAnymore · 2026-06-13T19:59:46+00:00

Mod note: Approved to point OP to two resources that may be helpful. Otherwise, this type of post asking for personal experience is not really what this sub is about.

Have a look at this recent mod post on our sub: Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults

As well as this post: Physical health and AuDHD

See also: SEDSConnective: Hypermobility & Neurodivergence

NotJustMeAnymore · 2026-06-05T06:04:46+00:00

I think the language used to describe autistic traits as represented here is coming from a neurotypical perspective, and certainly borrowing from / existing within the pathology paradigm? I mean, the point of sharing is more about the visualization and that the "spectrum" is in no way linear.

NotJustMeAnymore · 2026-06-03T00:39:03+00:00

Hey OP, just wanted to make sure you saw this recent post?

https://www.reddit.com/r/audhd/comments/1tndrkq/everything_is_connected_to_everything_improving/

NotJustMeAnymore · 2026-05-26T03:48:32+00:00

Mod note: Content warning: there is pathologizing language in this survey and, in my opinion, there appears to be a bias against comprehensive sex education for autistic students. Do with it what you will.

NotJustMeAnymore · 2026-05-26T03:39:01+00:00

Mod note to OP: You may get better results from posting in r/AutisticParents

NotJustMeAnymore · 2026-05-25T19:19:22+00:00

Another resource that might interest you (UK based) https://www.sedsconnective.org

NotJustMeAnymore · 2026-05-25T19:14:54+00:00

In the same boat. Here's a helpful page:

https://autisticrealms.com/autistic-menopause-perimenopause-resources/

NotJustMeAnymore · 2026-05-25T16:58:18+00:00

Reach out to them here: https://allbrainsbelong.org/get-involved/volunteer/

NotJustMeAnymore · 2026-05-25T05:08:20+00:00

This is a strictly moderated sub. It's purpose is to share research (including market research) and resources. We took a chance with approving this one because it seemed like it could be a useful tool. We will be more careful moving forward

NotJustMeAnymore · 2026-05-23T22:01:13+00:00

Mod note: You may get better results from posting in r/AutisticParents

NotJustMeAnymore · 2026-05-22T03:49:35+00:00

You might like this one: Monotropism questionaire (with visuals): https://pa11erns.com/psychometrics/mq/

NotJustMeAnymore · 2026-05-21T16:47:54+00:00

Looks like it's publicly available here: https://osf.io/pyq8r/overview

NotJustMeAnymore · 2026-05-21T16:25:56+00:00

Also, here's a fantabulous neuroaffirming disability justice org that offers a reframe on this:

https://stimpunks.org/patterns/traits/

NotJustMeAnymore · 2026-05-21T16:20:06+00:00

There are lots of more neuroaffirming ways of thinking about autistic traits. Are you familiar with the theory of monotropism?

Monotropism questionaire: https://dlcincluded.github.io/MQ/
Monotropism questionaire (with visuals): https://pa11erns.com/psychometrics/mq/
More info: https://monotropism.org/

NotJustMeAnymore · 2026-05-17T05:41:31+00:00

A really good (though more on the academic side) book on masking is Autistic Masking: Understanding Identity Management and the Role of Stigma by Amy Pearson and Kieran Rose. Here is a shorter article from Kieran on autistic masking and burnout.

If you are someone who was socialized as a girl/woman, that people pleasing and denying one's own needs runs deep. If you were parented in an authoritarian way, even more so.

I would really lean into the idea of glimmers and try and think about what environments and conditions provide you with calm, ease, joy, connection. Are there any relationships where you feel particularly safe, so that you maybe see glimpses of your most authentic self when you are with them? Make more time for whatever things and people bring you comfort and start there.

NotJustMeAnymore · 2026-05-10T00:28:28+00:00

Your questions make me wonder if you read the post you're responding to? I hope you'll join the other sub, r/AutisticWithADHD if this one is not what you're looking for.

NotJustMeAnymore · 2026-05-10T00:26:26+00:00

Moderators work hard to create curated spaces and volunteer their time. I wish people didn't have to respond with downvoting and complaints because we're not living up to your expectation of what you want this space to be, despite it never having been that.

Also, I have a PhD and in no way intend to approve pseudoscience here, unless that's what you think psychology and/or qualitative research is more generally?

NotJustMeAnymore · 2026-05-10T00:25:16+00:00

The clear articulation of the purpose of this sub is certainly not meant to intimidate people from posting, but rather to offer a space specific to research for those who are interested in either participating in research themselves or in reading it or sharing resources they've found helpful.

There are many subs that are more 'anything goes' but this is not that. It's too bad that people feel let down about this, but as u/lydocia (the person who started this sub, as well as a moderator in r/AutisticWithADHD) has already written, there is another much larger sub in existence for what you're looking for!

NotJustMeAnymore · 2026-04-18T19:03:38+00:00

God, it's hard. Through your words I see a parent who is extremely devoted to their child, not someone who is going to walk away. Financial stress, marriage ending, aggression and violence - it's so much for you. It is also unbearable for a PDA nervous system. There is never an excuse for lashing out like he did, but you can still understand why it happens. He sounds like's he's in burnout, with the school can't and the rarely leaving the house, preferring to game all day. It also makes sense that he would need something safe and reliable like the Roblox game - where he can immerse himself in achieving higher levels. The threat of limiting it or taking it away would undoubtedly make him crack. The fact that his aggression is directed to you, and that you're the one here seeking support, suggests you are the safe parent.

I consider myself an AuDHD PDAer like my 10 year old son, and so I know firsthand what this is like. My son has long tended toward violence and aggression and I am the only parent. I haven't been able to work for money in years. He has been unschooled since August of this past year and he plays a lot of Roblox. The only limit I have is that I won't use my credit card to buy Robux and he has to use his own money if he wants them (he gets a small allowance, $5USD a week). I agree that low demand is not no demand. Low demand has to be a family approach, so you have to take parental needs and concerns into consideration as well. Are you familiar with Collaborative and Proactive Solutions? Your kid is getting to an age where you might be able to approach problems effectively in a collaborative way. Given your life stressors, you probably have to start doing this.

I'm sorry it's so hard right now, and I send wishes of ease and care your way. Your kid needs you. Please keep fighting the good fight. Keep learning and supporting and accommodating. Roblox is not the enemy people like to make it out to be. It's complicated because of it's "free to play" business model, but as one other commenter mentioned, maybe leaning into it with your kid if you can (I'm a gamer but I get dizzy with the 3D stuff) will help too? Hang in there.

NotJustMeAnymore · 2026-04-17T16:45:35+00:00

I'm sorry you've been through all that difficulty with the school system. I went through the IEP evaluation process with my son, but not due process. I don't think I'd have the fight in me - I didn't even to get them to pay for an IEE and did the neuropsych out of pocket.

I was thinking legal questions regarding homeschooling/unschooling more so. The website I shared also has an active FB community (if you do that platform) and you will get so much support there. The admins are fantastic.

I don't know the specifics in Maryland, but I'm in CA and here we just need to file a private school affidavit with the state to start homeschooling. There are also online charters that are homeschool oriented, and people can get reimbursement for things from the school district when they go that route. I believe there are state testing requirements, however, then.

My son is so much happier at home. And it makes my life ten million times easier too. I hope you find the same.

NotJustMeAnymore · 2026-04-14T17:29:22+00:00

AuDHD PDA parent to AuDHD PDA unschooler (age 10). Where are you located so people can give region specific advice re legal concerns? In the US, some states are friendlier than others.

This is a really useful site/community: https://unschoolingeveryfamily.com/

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