Labels – limiting or liberating?

I know many people feel concerned about labels. And in some cases labels can be limiting depending on where you live and the laws. The U.S. especially is prone to these issues. And until we challenge these limits, they will remain. Avoiding the labels is a privilege (generally of wealth or power). Which means we have a responsibility to take ownership of these labels and challenge any limits attached to them on behalf of those who cannot.

Outside of the needed advocacy though, it’s a matter of perspective.

I like to use left-handedness as an example.

A person doesn’t “have” left-handedness. They are left-handed. They are a lefty.

Does that limit them? Not that I see. It does however empower them to understand themselves and ask for or set up accommodations like getting left-handed scissors or asking to sit at a corner where they won’t bump elbows with a right-handed dining partner.

So – I don’t have autism, I am autistic. I am on the spectrum. I am neurodivergent. I get that person first language is supposed to be empowering, but it turns a trait into a disease or damage. Cancer is something you can have, the flu or a cold you can have. No one says I have left-handedness.

I have ADHD means I have executive function challenges/impairments/differences. I really wonder how much of ADHD is just sleep problems?

both conditions can involve delays in language, heightened sensory responses, defiant behavior, problems with regulating emotions and difficulty with planning and with inhibiting behavior. Both also appear in childhood

Decoding the overlap between autism and ADHD | Spectrum | Autism Research News (spectrumnews.org)

ADHD alone – highly sensitive + sleep problems

Autism alone – highly sensitive + trauma or trauma epigenetics

Autism + ADHD – highly sensitive + trauma or trauma epigenetics + sleep problems

And if trauma can physically change the brain, and healing can also, then that would explain some of the struggles with finding structural causes.

So maybe I have Autism because I’m highly sensitive, had sleep problems because of tongue tie and childhood attachment trauma? I like the new umbrella term of high environmental sensitivity. And I think that neurodivergent works well as an umbrella term to just remind people that EVERYONE has a different brain and to check your assumptions that lead to conflict or challenge.

I am Autistic because I am highly environmentally sensitive and I experienced trauma. I have Autism because I am still working on healing my brain and my genes and my microbiome. I may be able to cure my Autism, but I will always be Autistic.

The other thing I like to do is the broken bone swap. It is something you can have. It is something you can heal from. Some people are able to heal quickly, some people heal slowly, and some people heal improperly, which you could also describe as some people never completely heal. That person is not defective, they have a problem. When you can see the problem, it makes it easy to be accommodating and either to know what accommodations might be needed or if you need to ask what accommodations would help.

Every mental “disorder” stems from a physical health problem. There is no such thing as “mental health” – there is only health. The sooner that becomes common knowledge, the sooner everyone can get the help they need.

Every time I write disorder, disabled and other words with dis- I get the urge to change it to diff-

Different order, different ability – because then instead of being not in order, not able, it recognizes that’s it’s a difference instead. And if that difference is a problem, then that is a problem of society/culture/community not understanding and accepting that difference.

A Chaos of ADHDers

I was in a meeting with some fellow ADHD folks on Saturday and we were discussing what a group of us would be called since using tribe could be seen as cultural appropriation and community doesn’t really roll off the tongue. Someone mentioned a Chaos of ADHDers and my immediate response was: Welcome to the Chaos! 😀

Really it’s just simple physics: E=MC^2 and the second law of thermodynamics – in a closed system Energy (E) tends towards disorder over time (entropy). Chaos.

Though really I think it could be applied for a group of people who accept and support neurodiversity, not just some specific flavor of neurospice. 😀

Hmm, so one of the challenges associated with ASD is theory of mind, which is the understanding that people have different minds (brains, neurology) and think and feel different things. But neurotypical people expect most people to follow neurotypical norms…. so isn’t that actually having worse theory of mind? Most folks who are ND recognize that we are different and that other people think differently (and are often baffled by how others think), vs. NT folks who might be better at understanding the thought process of other NT folks, but then mis-interpret ND folks, rather than recognizing a difference.

Wow, that person is rude! vs Wow, that person is uncomfortably direct, they must be ND.

Community Code of Conduct Templates

The folks at How to ADHD created an excellent welcome and code of conduct for their Discord server (seriously worth the $2 a month on Patreon!) and said I was welcome to create a generic template from it. I think it can be useful for any community that wants to welcome diversity and especially neurodiversity. Modify at least the parts inside <brackets> and more as is appropriate for your use.

Welcome section:

Hello <greeting of choice>! Welcome to the <community name> Discord!

This is a community for <describe community>. <Encouragement to read the whole thing. Ex. We know this looks like a lot but bear with us!>

Here, you’ll have the opportunity to connect with <community> from <locations, e.g. all over the world> and talk about <topic> in a shame-free environment.

On the <community name> Discord Server,

  • We believe that Neurodiversity is real;
  • We believe mental health is important;
  • We believe connecting with others in an authentic manner brings greater understanding;
  • We believe in creating an inclusive environment in which everyone has the opportunity to connect with others in the community.

What Can You Expect?

It’s important to be inclusive, show mutual respect for each other’s limits, limitations, and differences, and be trauma informed (don’t worry, we’ll explain). We have created a Code of Conduct to help facilitate this. It applies not only to our members, but our team members as well, in order to provide as safe a place as we can to accommodate as many needs as we can. We expect some mistakes and we encourage learning from them in a way that is healthy, not shameful, because we all make mistakes. While there are times we have to instaban people for the safety of our community, that is very rare, <reassuring/encouraging statement, e.g. this is a really great community and we’re excited to have you be part of it!>

How We Mod:

Our Moderators are here to help you meet our Code of Conduct (so you can be part of our <description> community!). They may reach out to you via DM/Pings regardless of chosen communication preferences in order to do that by providing reminders, clarification, and/or reasonable accommodations if needed. Their goal is to help you have a positive experience on the server and connect you with the community. One way we do this is by providing channels like ask-a-mod if you have any questions but don’t know where to go! We also give the mods the ability to mute, which allows them time to review & handle a given situation while keeping the community safe. At the same time, they are just as human, and additionally they are all volunteers. As such, we can’t promise they won’t miss things or always be available to step in (or provide everybody with every possible accommodation).

What Is Trauma Informed?

As a trauma informed community in which potentially triggering topics are discussed, we encourage you to step away at any point as needed and come back when you feel ready to, even if you’re in conversation with a mod (even if you are a mod!) Because we’re all in different places on our <descripton e.g. mental health> journey and we all have bad days, we’ve created a Code of Conduct with baseline expectations <descriptive term, e.g. standards> as well as aspirational ones <descriptive term, e.g. stars>. While we’d <expression of want/hope, e.g. love> for you to <reference attempting to meet aspirations, e.g. shoot for the Stars>, it is a requirement to adhere to our Standards to be on our server. If you disagree with any of these things, this community may not be a good fit for you. Also, there are limits to how much we are able to accommodate individual needs, especially with a volunteer staff. As much as we wish everyone could find the connection they’re looking for here, our goal is to serve the entire community and we ultimately reserve the right to remove users who cause our community and/or team to feel unsafe and/or harmed.

<humorous encouragement to continue>

Code of Conduct

  • We use welcoming, encouraging language.
    • Standard: We do our best to avoid language that is criticizing, blaming, nagging, punishing, shaming, controlling, patronizing, or infantilizing — if we catch ourselves using such language or a mod reaches out and asks us to edit it, we edit it.
    • Star: We use welcoming/caring language: supporting, encouraging, listening, accepting, respecting, negotiating differences, loving, joining, praising, friendship, understanding, and/or validating.
  • <rating conduct if applicable
    We keep content rated PG-13. We move rated R content to a NSFW channel. Rated X we take off this server.
    • Standard:
      • We refrain from posting images/videos/links of NSFW (not safe for work) content. We minimize sharing details in non-NSFW channels.
      • When discussing mature topics(rated R) or graphic details, we use the appropriate NSFW channel. (If we don’t realize a topic is NSFW and are directed to by a mod, we move the topic to the NSFW channel).
      • NSFW being: . (1) Sex; . (2) Graphic details regarding abuse, violence, or medical procedures; and . (3) Discussion/support regarding drug/alcohol addiction struggles. (Looking for peer support is fine; actively encouraging or promoting the abuse of drugs & alcohol is not.) (Note: You must be 18+ to access NSFW. If we learn a user accessing NSFW is under 18, their NSFW access will be removed, and a No NSFW lock will be provided via a No NSFW role.)
    • Star:• We check in to make sure others are comfortable with the conversation even in NSFW channels. We take mature topics to a DM with those interested (and of age) if not and/or if there is a need or desire to go into more detail.
      >
  • We make space for each other and treat each other with respect (even when we have differing perspectives).
    • Standard:
      • We refrain from attacking, demeaning, dismissing, harassing, or threatening each other. This includes: Bullying, bigotry, hate speech, harmful trolling, doxing, physical threats, personal attacks, telling people that their lived experience is wrong, and shaming others for their choice in treatment.
      • We do not attack, demean or dismiss anyone based on their: sex, gender, sexual orientation, romantic orientation, race, ethnicity (or culture), neurodiversity, mental health, physical health, religion, or political alignment. (Discussion of discriminatory practices is not considered political.)
      • We also do not attack, demean or dismiss anyone for not sharing our perspective on something or adhering to our particular values or social standards.
      • We refrain from attacking or criticizing someone for their choice of words. If something someone says breaks a rule, seems intentionally malicious, or is otherwise problematic in nature, we alert the Mod Team, who will review the situation.
    • Star:
      • We make space for others to share their personal experiences. We speak to our own experiences and express curiosity and a willingness to learn about the experiences of others.
      • If we see someone is reluctant to talk or struggling to break into the conversation, we (gently) invite them to talk and ask questions that may help ease them into the conversation, and respect if they don’t want to.
      • In the event of conflict, we assume good intent and if possible, ask for clarification in a way that’s respectful and non-judgmental.
      • We recognize that different people have different communication styles and different humor styles and make space for that as well (within the confines of our Code of Conduct). When asked what we mean, we provide honest clarification.
  • We call people what they asked to be called.
    • Standard:
      • We call people by their stated names/pronouns/identities. We respectfully (without making it a big deal) ask others to update their message if a dead-name or incorrect pronoun is used (yours or someone else’s). If someone respectfully asks you to update an incorrect name or pronoun in your message, kindly take the note & edit the message when you’re able. (Note: Accidentally using an incorrect name or pronoun is not considered breaking the rule. Being disrespectful about being asked to update the incorrect name/pronoun is.)
      • We do not correct people on their usage of their own names/pronouns/identities. If someone prefers to be called autistic or “has autism,” it’s the brain owner’s choice; the same goes for “Aspergers” vs “ASD” and “ADD” vs “ADHD”. We do not berate, criticise, or otherwise demean others who are struggling to remember a stated name/pronoun/identity. If we have concerns that continued use of incorrect names/pronouns/identities are malicious, we let a mod know.
    • Star:
      • Be curious about someone’s personal experience and diverse perspectives (and how it might impact their ADHD!), and listen with the intent to learn, not judge or compare. Be respectful if they choose not to share. If you are concerned you may be asking a personal question, request permission prior to asking.
      • If someone expresses curiosity about why some people may not like a certain term, we work to educate them respectfully. If afterwards they still continue to use the label they are comfortable with for themselves, we respect their choice.
  • We respect, but are not responsible for, each other’s limits and limitations. We also respect our own limits and limitations.
    • Standard:
      • We refrain from forcing members to adhere to our limits and/or limitations, and from dismissing someone else’s limits and/or limitations. Communicate your limits and/or limitations respectfully. Refrain from arguing or fighting each other (including our mods) or shaming someone for struggling with something you think they “should” be able to do.
      • If someone has pinged/DM’d outside of our preferences, and we wish to address it, we respectfully let the person know about our preferences. We avoid repeatedly pinging/DM’ing someone against their preferences. If you have a concern regarding something another member has said or done please reach out to a moderator.
    • Star:
      • We check someone’s roles to see what their ping and/or DM preferences are before pinging or DMing them.
      • We consider googling and self-educating about the struggles of marginalized communities rather than asking someone of that demographic to explain the struggles of their entire demographic.
      • If you are at your limit and aware that you might bring the mood down or lash out, consider going to our support or rant channel, or walking away for a set period of time that works best for you.
      • Reach out to our mod team for help when you aren’t sure how to get your server needs met. We may have some ideas or accommodations that may help!
  • We maintain a trauma informed environment. (1/2
    • Standard (1/2):
      • In order to facilitate these conversation while still keeping our server safe for others, we use NSFW channels and spoiler tags when talking about the following: (1) rape/sexual assault, (2) graphic violence, (3) graphic medical topics, and (4) suicide/self-harm and avoid talking about plan specifics or methodology. If we are asked to add spoiler tags to our messages containing any of these topics, then we spoiler tag the entire message.
      • Refrain from disrespecting, making fun of, or otherwise dismissing someone’s trauma (including their triggers). Refrain from forcing others to share, respect if they do not wish to disclose their experience.
      • While it is not others’ responsibility to avoid your particular triggers, if you feel someone is purposefully bringing up your triggers to harm you please reach out to a moderator as this would be considered harassment.
    • Standard (2/2):
      • We refrain from catastrophizing the lives of others, in other words: we do not bring up a worst case scenario to someone about their own life unless it has a high probability and is being brought up with the intent of actively preparing for it (AND if they have asked for it). If we are asked to edit or remove a catastrophizing message, we edit or remove it. (Forgetting to spoiler tag or accidentally catastrophizing does not break a rule – refusing to edit or remove a message when asked by a moderator is.)
    • Star:
      • Take the time to check out resources on trauma. Replace language such as “what’s wrong with you?” with “would you consider sharing what happened to you?” We ask if it’s okay to share about our traumatic experiences, disclose our own experiences as we feel able and safe to, and check in to see if people are comfortable with the level at which we are sharing (to avoid trauma dumping.)
      • If you’re feeling triggered, step away. If there is a part of the server that is too triggering for you, consider muting it or asking a moderator for help with finding an accommodation.
  • We provide our own experiences rather than provide direct advice.
    • Standard:
      • When someone asks about different medical treatments and therapies, we stick to speaking about our own experiences (keeping in mind experiences may differ greatly between individual people). If we do provide more than our experience we share resources, strategies, and ideas without giving direct advice. We can say things like “a lot of people with ADHD find this helpful,” “I find this helpful,” “this was a strategy Jessica shared on the channel,” “here are a few resources that might help,” just no direct advice that’s specific to them.
      • We avoid providing direct advice (both medical and generalised) that is specific to that person — if we do and we’re asked to remove it, we remove it. (For example: Describing your experience is okay; advising someone take very specific and direct action is not.)
    • Star:
      • We also disclose that everyone is different, and that your experience does not necessarily mean they will experience the same thing.
      • Considering asking questions, like “What has worked for you?”, “What didn’t work for you?”, etc, to support them in coming up with their own solutions.
  • We let the Mods do the modding as they have the training to do so. We respect moderator decisions and their time. If you do not agree with a decision, respectfully bring it to <mod/server manager>
    • Standard:
      • Refrain from arguing with the moderators and/or engaging the moderators in lengthy discussions. If you do feel something needs to be reviewed please bring it up respectfully to <mod/server manager>.
        (Please note disagreeing and bringing it up respectfully is not breaking the rule, actively attacking and/or fighting the team is.)
      • If you notice someone isn’t following a rule please refrain from correcting community members, instead, please briefly share your concerns with a moderator.
    • Star:
      • If you have a concern or disagree with something the moderators have done please respectfully reach out – we are happy to discuss a situation and listen to concerns. (We may not always be able to go into detail, but we will do our best to provide an adequate answer for our decision.)
  • Discord ToS & Guidelines
    Please note that Discord ToS & Discord Community Guidelines also apply: https://discord.com/termshttps://discord.com/guidelines .
  • Disclaimer
    • The <community name> Discord server is for those interested in <topic> to connect with each other, and is not a replacement for <relevant professionals>. Our team members are not trained professionals.
    • In order to protect our community, we reserve the right to delete messages that are actively suicidal. <action(s) that will be taken if any, e.g. If that is the case, we will provide crisis resources via DM, so that a trained professional with proper resources and tools can provide the help needed.> If you or someone you know is actively in a crisis and need immediate help please read this PDF: https://drive.google.com/file/d/1ENf-1z0Dy4_SgabKngnZh-QmGaYtRIKd/view
      For a list of some International hotlines please refer to this document: https://docs.google.com/document/d/1MBzdcTBcrRO2lMn8HlsNZ_scbhPN4Yaz3gcEohYJonk/edit?usp=sharing
  • Channel-Specific Standards
    Once you’ve gained access, you will also find channel-specific standards in these channels:
    • promote-a-thing – For promotion standards regarding <types of promotion, e.g. self-promotion, discord invites, and research survey requests.> (Opt-In to see this channel via the “Promotion Sharing” role in roles.)
    • <if relevant: meet-the-team – For standards regarding DMing/Pinging team members.>

<Recognition/praise, e.g. You did it! Great job!> <acknowledgement/appreciation, e.g. We know it was a lot.> Go ahead and check the done box! In order to open up the rest of the server, please react below in order to verify! (It looks like this: ✅!) <welcoming phrase, e.g. We can’t wait to meet you!> After this, you’re free to head over to roles and pick your roles, including what chats you want to opt into, notification preferences, ping/DM preferences, and more!

Reaction not working? Confused on what to do next? Feel free to ask a mod for help!

Diagnosing Females

I just heard about Kadiant today because they did an online assessment that did not accurately diagnose someone’s daughter.

Unfortunately, it is absolutely harder to get girls diagnosed because they present differently and they mask habitually. I was diagnosed officially at 42 after self-diagnosing at 39.

One of the first special interests of many autistic girls is social rules – so they learn to mask very early and very well. Then they get seen as “just” shy and anxious. I can’t find the meme about boys vs girls at the moment.

If the person diagnosing doesn’t know how to check for the existence of a mask, they certainly aren’t going to be able to see around/behind it. And most autistic females don’t even know they are masking, so they can’t “just” drop it for the assessment.

If this happens to you, ask which diagnostics were used. Ask them to try another one or for a second opinion.

Also, a key thing that many questionnaires don’t tell parents that when a question asks what their child can do, they don’t mean what CAN they do – with support/under the right conditions/sometimes, the question is actually asking what they can do completely independently and without supports (like visual schedules, etc.) at least 80% of the time.

The other thing to do is look at the CDC milestone lists and see which things are/were missing/delayed.

I made this health history form to help me figure out some of those things by looking at journal entries, texts, emails, photos, etc. to find the kind of information often asked for.

ADHD, anxiety and hyperlexia are all common signs of autism in females. Collecting and socially acceptable special interests also can be indicators. An obsession with horses and/or ponies that lasts longer or goes deeper than their peers. As kids it can be collecting dolls or certain toys, especially if they arrange or organize them instead of doing pretend play. As adults, shoe/purse/jewelry/makeup collections are common.

Your daughter probably isn’t “just being dramatic” – she’s anxious and doing whatever is needed to get your attention, or she’s overwhelmed by emotions she doesn’t know how to handle.

Anyone and everyone can slip into fight or flight mode – and the prefrontal cortex doesn’t mature until 20-25 and for neurodivergent individuals it’s often even later.