Scripts to Self Advocate with Doctors

  • You see WNL or your health care provider says results are “Within Normal Limits”
    • What demographic was used to establish the normal limits? Are you in that demographic? If no, then more information is needed.
    • If yes, what is the bell curve and where are you on it?

For example: I was WNL for thyroid hormone, and my IVF doctor put me one thyroid hormone replacement therapy because they had found an effect on fertility at “sub-clinical” (WNL but the low end of the bell curve) levels. It cleared up the fatigue I had developed in the prior year even though my thyroid had been checked when the fatigue flared up, so that “couldn’t” be the cause. Except it was.

  • “The test result is slightly abnormal, and it could be several things.”
    • Reply: Ok, so best case it’s nothing, what’s the worst case and the most common case – if those are two separate things? And what’s the next step to rule out (find the differential diagnosis) the worst case scenario?
  • You need an ESR test.
    • The ESR (erythrocyte sedimentation rate) test measures inflammation. Just refuse it and probably go find a new doctor. As far as I can tell ALL illness is caused by inflammation and there is no such thing as “all in your head” meaning not in your body. Your brain has incredible control over your body, so it might be causing the problems, but the ESR test won’t really help direct you.
  • You need a full body CAT scan.
    • I would refuse it, it’s just radiation and the doctor having no clue where to focus. Find someone with a clue. Unless you’re doing it for a research study, in which case, awesome, thank you and how do I sign up? 😀
  • When picking a surgeon, ask:
    • how many of that specific surgery they have done total and annually for the past 3-5 years.
    • what their worst outcomes have been. If they don’t have any, I wouldn’t trust them. Either they are hiding inexperience, or they haven’t done enough to come across a hard case.
    • what the worst possible outcome might be, say with a less experienced surgeon – (look up the answer either before or write it down to look up after so you can verify if they actually know and are willing to tell you the risks)

For example, I asked Dr. Zaghi of the Breathe Institute and his worst cases were some excessive bleeding and having to go back and redo the surgery. He also acknowledged that permanent nerve damage and pain was a possibility even though he’d never had that outcome before.

  • “medically unexplained but not dangerous”
    • This means that they don’t know the explanation, not that one doesn’t exist
    • how do they know it’s not dangerous if it’s unexplained?

This is a great one:

What They Say vs. What They Mean: How Doctors and Patients Miscommunicate | National Headache Foundation (

Assume every medical worker is Neurodivergent – bring a list of questions in order of highest to lowest urgency. Urgency should be based on how much/often it impacts your ability to perform activities of daily living.


What Your Doctor Really Means When He Says . . . (

How do doctors determine that symptoms are medically unexplained? (

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 (

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.

Employing Neurodivergent Folks

Have alternative processes been considered? I know for many folks, myself included, job application forms (any forms) are horrible to fill out (wall of awful + motivation bridge). And we might not present well on paper – I’ve submitted 100s of applications in my life and only gotten 3 interviews, and been hired every time. Others I know get to the interview regularly and then get stuck there, but if hired by someone they know to side step the usual process, they do amazing work.

Input Required

I had a friend ask for ideas, I’m generalizing here for anyone it might help.

Kiddo asks parent for proprioceptive input.

Parent either can’t or can only offer some input.

Kiddo can’t handle the refusal – they already are disregulated and needing input, so they escalate.

My suggestions came from my experience:

1 One, it’s ok to have boundaries, and the less someone respects your boundaries, the bigger the boundaries have to be.

I’ve described it like the following distance when driving – if someone in front of you or behind you is tailgaiting, you need a larger following distance. That way if the person in front crashes from tailgaiting you have time to brake. If the person behind is too close then you also need time to brake slowly so they don’t hit you like they would if you had to stop suddenly.

What this looks like is stopping your kiddo farther away and asking them to slow down and ask first. If they are too disregulated to respect the boundaries, then you know to take action to protect yourself and help them get regulated. For example my personal bubble with the kiddo is my head and my back, if he wants to go behind me he has to ask, and if he wants to touch my face he has to ask, and if he wants to give me a hug, he doesn’t have to ask unless he’s trying to come up behind me.

2 Two, if they are asking for input you can’t give, try to give them or help them get the input they need. I’ll offer “squeezies” – a big bear hug, “squishies” – squishing the kiddo between me and a counter/wall/etc. or “jumpies” – holding hands and the kiddo jumps while pushing down on my hands, similar to holding a gym bar or pushing down on a counter or table and jumping.

In this case kiddo wanted what we call “shoulder bup” – sitting on shoulders. The two alternatives I thought of was doing a piggy back and then leaning against the wall to take some of the weight off or doing the shoulder bup with leaning back so that most of the kiddo’s weight ends up on the back of the seat if available.

If those aren’t options, a headstand or handstand might help or the other types of input mentioned. Another one we like is “Timber!” where they call that and you are a tree that then falls down on them – usually sitting side by side and leaning into them.

How do I get people to take my advice?

First I have a question – how do YOU feel when someone gives you unsolicited advice?

  • Patronized? (Mansplained)
  • Condescended to?
  • Defensive?
  • Criticized?
  • Angry?
  • Annoyed or irritated?
  • Appreciative?
  • Grateful?

If it’s more like the first ones and not the last two, why would someone else feel differently?

What would happen if instead you asked if they were open to you sharing ideas or your experience?

What if you respected if they weren’t ready to hear it, but at least they know you’re available if they want it?

What if you asked them what they think they need or what they want, and why they want it? Could you ask leading questions so they could figure things out on their own?

What would happen if you took your own advice first? What would it look like to be the change you want to see?

What are you missing if people aren’t listening to you? Are you not connecting first? Are you regulated? Are they?

Cassandra from Greek Mythology embodies the anguish of seeing the future and not being able to do anything about it. But it’s a misleading tale – we can do something about it, but not the thing that is easy for us – telling others.

We have to do the hard work of helping them see for themselves, or the even harder work of connecting with others so strongly that they trust us to be looking out for their best interests as well.

The Human Animal

Wait, do you think humans aren’t animals? We certainly aren’t minerals or plants…..

I think if we weren’t an especially fancy type of animal, then animal studies and models would be worthless.

Humanity – I think the definition of the word explains things fairly well. I would say that the state of being human requires us to be benevolent – caring of others. And to care for others we need to understand and care for ourselves. Culture is a system that humans construct collaboratively to help us remain human, instead of devolving into mindless reactivity.

human beings collectively
the state of being human
the quality of being humane; benevolence
learning concerned with human culture, especially literature, history, art, music, and philosophy

Powered by EcosiaOxford Languages

When we are not paying attention and acting intentionally/deliberately from a place of self-regulation, then the amygdala and automatic processes are in control. If you don’t like the results, you need to update your processes.

This research showed how all temperament types responded to the stimuli the same way, but different temperaments move through the responses at different times. He commented “that the most basic inherited difference … was how soon they reached this shutdown point and that the quick-to-shut-down have a fundamentally different type of nervous system.”[27]

He is known in some fields primarily for his work in classical conditioning.

Ivan Pavlov – Wikipedia

So, ND/HSPs have a fundamentally different type of nervous system (including the brain) is what I would take away from this.

Also, if you have an issue with “Pavlovian Training” and consider it being treated like a dog…. you are choosing for yourself an interpretation that is only going to make your life harder and more painful.

Another name for it is classical conditioning, which is a behavioral procedure in which a potent stimulus is paired with a previously neutral stimulus.

It is used for things like ADHD treatment and in life hacks like Atomic Habits by James Clear who describes it like this: “All habits proceed through four stages in the same order: cue, craving, response, and reward.”

“It is easier to prevent bad habits than to break them.” ~ Benjamin Franklin

“When dealing with people, remember you are not dealing with creatures of logic, but creatures of emotion.” ~ Dale Carnegie, author of How to Win Friends and Influence People

“We are what we repeatedly do. Excellence, then, is not an act, but a habit.” ~ Will Durant

“Change is not popular; we are creatures of habit as human beings. ‘I want it to be the way it was.’ But if you continue the way it was there will be no ‘is.'” ~ Robin Williams

“Man is largely a creature of habit, and many of his activities are more or less automatic reflexes from the stimuli of his environment.” ~ G. Stanley Hall

“We are all creatures of habit. We can do most things without even thinking about them; our bodies take charge and do them for us.” ~ Earl Nightingale

“It is hard to let old beliefs go. They are familiar. We are comfortable with them and have spent years building systems and developing habits that depend on them. Like a man who has worn eyeglasses so long that he forgets he has them on, we forget that the world looks to us the way it does because we have become used to seeing it that way through a particular set of lenses. Today, however, we need new lenses. And we need to throw the old ones away.” ~ Kenichi Ohmae

“I’m a creature of habit and I like to stay in my own little comfort zone, but you have to reach out of that sometimes. And when you do that, you grow.” ~ LaToya Jackson


The shaping of character mimics the smallest detail of habit; humans are creatures that learn from observation. Each little thing you do, and each thing you allow yourself to become desensitized to matters. They create you – whether you know it consciously or not. — Grace Sara

Quote by Grace Sara: “The shaping of character mimics the smallest de…” (

My umbrella hypothesis about sensitivity, Autism and neurological differences

Just found this October 23, 2022: How Childhood Trauma Leads to Addiction – Gabor Maté – YouTube


Lacking those needs, we lack health.


This is my rough draft, I’m throwing things out before they are polished to get the ideas out in the world sooner.

HSP 20%-30%

So if Neurodivergent (ND) = HSP

Then ND = 20-30% and Neurotypical (NT) = 70-80%

OCD, ASD & ADHD are not neurotypes, they are collections of challenges that ND/HSP have or they are symptoms of an underlying problem (impared sleep for example) or lack of certain skills.

For example:

  • Emotion regulation is a skill. NT tend to learn it innately, ND often need direct instruction, which they may or may not get as children. (ND tend to learn scholastic skills innately instead, but NT need to be taught that)
  • Executive dysfunction is often impaired by sleep issues which can stem from many sources. NT with sleep problems also have executive function challenges. Sleep problems are just much more common and harmful (larger impact per degree of problem) for ND. Part of that goes back to the self regulation skills and whether they were taught or not, such as good sleep hygiene and routines.
  • Anxiety is common among ND, that’s actually their role – to be the cautious future thinkers. Again it comes back to learning emotion regulation skills to manage the anxiety (Think Cassandra of Greek myth – if you’ve identified with her, you’re probably ND)
  • In OCD the ACEs (adverse childhood experiences) have tuned their brain to be even more sensitive to danger and the compulsions are a coping tool. Either they are hyperfocusing on something to avoid the pain of the anxiety or they are using a strategy to calm themselves or it was a self preservation habit or something along those lines
  • ADHD and Autism: Aspergers or ADHD? The answer will surprise you. – Penelope Trunk Careers
  • ASD difficulties in social interactions and communication – again just a skill not taught that NTs pick up automatically and NDs don’t, and also there has been research showing that ND communicate fine with ND, it’s just the ND-NT communication that is challenging. Yes, talk to us like you would a 5 year old. Direct, detailed, clear, concise language, with compassion and kindness. And if that’s not how you communicate with a 5 year old, I don’t really want to be communicating with you anyway.
  • ASD repetitive behaviors are again compulsions like OCD, they are a coping tool – so adverse events paired with a lack of (socially acceptable) coping skills/tools can result in presenting as ASD
  • ASD intense interests – again, this is the role of ND/HSP – I would guess that every advancement ever was made by someone ND, either because they didn’t realize not to do something just because no one else did it or because they were curious. NDs with good social & emotional skills have intense interests/are deep thinkers (see HSP descriptions) – they just mask or control them successfully when interacting with NT folks or a mixed crowd.
  • unusual responses to sensory stimuli – Again this is just the role of the ND – high sensitivity for danger detection paired with a lack of coping tools or skills – NDs are the canaries in the coal mine of the human race (link rise of Autism with chemical farming, smoking, sitting, sugar, processed foods, diabetes, Alzheimers, microbiome)
  • The reason people have been able to “cure” autism is because they have been able to teach the missing skills or to correct an underlying health problem caused by the high sensitivity, such as intolerances to gluten, food coloring, etc. The person is still ND, but the problem behaviors (maladaptive coping tools, missing self-regulation skills, dysregulation caused by a health problem) have been resolved.
  • Ehlers-Danlos has a high co-morbidity rate with ASD
    • It’s a collagen disorder, the hypermobile type is the only one they don’t know the genes for the last time I checked – which would make sense if they are trying to compare people who have EDS and are diagnosed because they are suffering from it, and people who don’t have it + people who have it but are undiagnosed because they are not suffering from it or it has been labeled something else like Chronic Fatigue Syndrome, Fibromyalgia, etc.
  • One of the symptoms of defective collagen is increased tissue permeability
    • That could be a major factor for the sensory sensitivity of ND (HSP)
    • Again, there are things that can be taught to reduce the risk of challenges, there are those who innately figure them out or are taught in childhood and they often go undiagnosed unless it causes problems later in life (arthritis, joint pain, etc.) or they are misdiagnosed because EDS is “rare” – even though they know it’s a dominant gene????

So that leaves us with two things:

First – how can we test this hypothesis?

Second (wish I could recall what I meant, maybe the “what should we do about it?” part?)

Research studies that screen for EDS (somatic traits), HSP (mostly cognitive traits), OCD, ADHD & ASD, ACE & PCE scores and brain scans.

Participants should include large cohorts that are already diagnosed with one of the above issues and screen for the rest in addition to NT controls.

ADHD symptoms arise from executive dysfunction,[6][7][8] and emotional dysregulation is often considered a core symptom.

Obsessive–compulsive disorder (OCD) is a mental and behavioral disorder in which an individual has intrusive thoughts and/or feels the need to perform certain routines repeatedly to the extent where it induces distress or impairs general function

Risk factors include a history of child abuse or other stress-inducing events; some cases have occurred after streptococcal infections.

Obsessive–compulsive disorder – Wikipedia

The autism spectrum is a range of neurodevelopmental conditions generally characterized by difficulties in social interactions and communication, repetitive behaviors, intense interests, and unusual responses to sensory stimuli. It is commonly referred to as autism or, in the context of a professional diagnosis, as autism spectrum disorder (ASD), but the latter term remains controversial among neurodiversity advocates, neurodiversity researchers, and many autistic people due to the use of the word disorder and due to questions about its utility outside of diagnostic contexts.

Autism spectrum – Wikipedia

Having a partner is overrated if you aren’t happy.

I replied:

Only someone with autism would say that. Having a partner is absolutely NOT overrated. Steering one’s own ship IS overrated. Wanting to do everything how we want to do it at the cost of making compromise to share life with someone else is the definition of autism…The human race would not have survived if it were normal to want these things.

She replied:

[I had] a narcissistic/borderline mother who made emotional chaos normal in my childhood…So I picked two husbands where emotional chaos was normal. Then I got sick of feeling emotionally drained and got out. Since then I’ve navigated carefully to protect my serenity. In therapy again now to expand my thinking around this and more. I don’t think I’m autistic. 

I replied: You’re autistic. Here’s why:

Self-analysis is autism

Just because you can spew DSM stuff doesn’t mean you’re not autistic. In fact, analyzing ourselves as a hobby is a marker of autism — we are constantly trying to understand how to world works, and how we feel comfortable. Because actually we can’t do either of those things. And the real reason we are out of step is that our brain makes us blind to ourselves. We see other people clearly but we don’t see ourselves.

But wait, all that analysis has payoff. People with autism are better writers than everyone else, because we spend our life memorizing dialogue and replaying it in our heads trying to figure out what just happened. ]….

Autism – Penelope Trunk

[Borderline personality is autism

So many autistic women think they are not autistic but “just recovering from a mother who has borderline personality disorder”. But autism and BPD frequently go together and scientists think BPD is so similar to autism that it’s another autism spectrum disorder. BPD is caused primarily by a mother who has BPD and autism; her erratic parenting causes her autistic daughter develop BPD.

Narcissism is autism

Narcissism and autism are so similar that scientists are thinking narcissism might be a subset of autism so we could just delete the narcissism category from the DSM.

There are many published papers explaining why narcissism is part of autism. You don’t need to know every piece of research but you do need to know that if your therapist diagnosed your parents or your spouse with narcissism it’s because the therapist doesn’t understand autism, and you have it, and that therapist can’t help you.

Divorce is autism

When the commenter writes that she’s been divorced twice. That’s probably because she decided the men have a problem (narcissism) and she has a problem (raised by a mom with BPD) and she felt depressed. But depression is part of autism, regardless of who we pick to marry, and staying married protects against the worst depression.

Autistic marriages are likely to end because we have the most emotionally compromised dating pool. If you’re not autistic you sort out people who violate all the social rules for dating. So autistic people are left with a dating pool of each other, and we don’t even notice there’s anything wrong.

Loneliness is autism

That is, until the honeymoon glow turns to marital glower and loneliness seems hard to separate from choice of spouse. I’ve done that. But once you get divorced, you’re forced to diversify your ideas about loneliness.

I used to think loneliness was something I had from not being around enough people, and that’s why I feel less lonely when I write on my blog. But I discovered that loneliness is a neurological disorder. Loneliness isn’t caused by a lack of social support. Loneliness comes from chronic illness or social anxiety. And the only way start feeling less lonely is to first acknowledge it’s an autism thing.

Interestingness is autism

So, yeah, I do think the commenter has autism. She must be really interesting to have appealed to her ex spouses because she — like me — is totally interested in her own stuff. So we are magnets for people who like interestingness. And wanting life to be interesting is not normal. There are higher values than that. But not for us.

So it’s no wonder that adults with autism know more about autism than mental health professionals. And if you want to know if you have autism, don’t ask a professional. Ask someone with autism. And if you want your life to get better after you find out you have autism, talk to people who also know they have autism. You get really smart about yourself really fast once you have that label.

Autism – Penelope Trunk

amygdala vs prefrontal cortex

my hypothesis is that there is a common neurodivergent brain type identified as HSP, also seen in non-human populations and that OCD ADHD and autism are conditions that affect that neurotype based on: chemical exposures, childhood ACE or PCE and epigenetics. Especially with chemical exposures, ehlers-danlos seems to be also tied in, as that may make tissues more permeable and more susceptible to chemicals creating epigenetic changes, also might support the sensitivity trait

Disabled by the environment or the social model of disability

survival and success through diversity

Societal roles and functions of neurotypical and neurodivergent

Two sides of any trait, for example: anxiety stems from future thinking, future thinking allows planning for the future – for example this climate crisis

Maslow’s hierarchy of needs versus the Blackfoot Native American system

United States medical system is broken. The education system is broken. The legal system is broken. The economy and government are broken.

This is how humans learn – through failure. We break things to figure out how they work. And with that understanding we can repair or rebuild better.

Mental health is physical health – the brain is part of the body and what you eat goes into your body and is what your body uses to run itself, so food is medicine.

If the soil is lacking nutrients, then the plants will also, and so will we or the animals we eat who eat the plants. Without the nutrients we need, our immune systems end up in overdrive or we end up with “neurological” disorders because we don’t have the components needed to work properly. Our immune systems get overwhelmed or confused and we end up with inflammation, which ends up being the root of so many diseases.

Notes from Stanford Neurodiversity Summit:

ADHD Finance Tricks – Online Banking Or App Banking

Either don’t allow bills to be pulled from a checking account – send the payments out from the account so you can see all the pending activity OR

Only allow bills to pull out of one separate checking account – then transfer the money for that bill to that account – that money is spent and not available

If you have a regular credit card you use, figure out what your required or usual minimum payment is and schedule that to be sent from your bill pay automatically (recurring) so worst case you’re charged interest instead of late fees + rate hike + interest + getting your credit score dinged. Then if you remember you can just edit the amount up to either the last statement balance (to avoid interest fees) or the full current balance. To help remember, set a recurring alarm, reminder or calendar item at least 3-5 days before your statement date (which should always be the same date).

The other option is to set the card to autopay from a separate account, and anytime you spend money on the card, transfer that amount to the separate account.

Use an ADHD friendly credit union (non-profit) or bank that have free accounts with no minimum balance and allow multiple accounts, cards or buckets (envelope method) to help you sort/track and have bill pay.

Also check that on debit accounts they don’t have “courtesy overdraft” – or ask them to turn it off – otherwise when you use your debit card, it won’t be declined if the account is empty. Much better to step out of line after getting declined and to take a moment to check your account while they ring up the next person than to spend the money you don’t have and end up with various overdraft fees.

Shopping scripts for those who want them:
“I’ll have to get this another day, it can all go back, thanks.”
“Please ring up the next person while I double check my account, thanks!”
– Step aside and check your account online then one of these three:

  • “I’ll have to get this another day, it can all go back, thanks.”
  • move money if you have it set aside then ring up
    “All set, let’s try again, thanks.”
  • if you have only part of the money you need, tell them which items are go backs*
    “<X> and <Y> are go backs and we can try again with the rest thanks.” or “I’ll just get <C> and <D> today, thanks.”

*”Go backs” are a standard part of retail – folks change their minds or notice something is not the right type or their kid grabbed it without them noticing – it’s much easier for the workers and less costly for the business to collect go backs at the register to put away than to have to find them left randomly on shelves and in the case of freezer or refrigerator items they might have to trash the item if they’ve been left out an unknown amount of time.

Go backs are a kindness and a form of conservation/sustainability/eco-friendliness.

Thanks instead of sorry – express appreciation for others instead of deprecating yourself:

It’s ok if the usual ways don’t work, Try Different (The Fish Song – A Song For ADHD Brains – YouTube).

If budgeting the usual way makes you feel like your brain is melting, try building one based on where you live and household size:

Places to start your search if you need to change banks:

  • Credit Unions (ex. Safe Credit Union, Redwood Credit Union, whatever union you’re eligible for that offers free accounts)
  • Banks (Ally Bank – buckets, USAA if you’re eligible, Best Free Checking Accounts – Bankrate)
  • Other options: Famzoo or other refillable prepaid cards as the updated version of envelope tracking

None of these are paid links, just trying to share info that has helped me.