Tag Archives: autism

by

Hydration

Figure out if your sense of thirst works (part of interoception). If you can go hours without getting thirsty, it might not be working so well.

If your “thirsty don’t work” then building in a hydration habit is important to avoid dehydration.

Ted Ed: What would happen if you didn’t drink water? – Mia Nacamulli – YouTube

Habits: https://youtu.be/PZ7lDrwYdZc 
Effective practice: https://youtu.be/f2O6mQkFiiw

Water | Bunny’s Info-Dump (sweetpeastudio.biz)

Water Calculator: Water Intake Calculator – How much water should you drink per day? (gigacalculator.com)

by

Friends

I’m lucky to have supportive friends and family.

I wish I had more local female friends that recognized their neurodivergence. People don’t want to be told that their camouflage is failing.

Right now zoom is tiring as I adjust to my new meds and new diagnosis, so it’s hard to connect with my openly neurodivergent female friends that all live out of state.

I’m posting this so that others might realize that they could be more open about being Autistic and various types of neurodivergent.

Or go take Penelope’s class: Autism research that fixes your life – Penelope Trunk Careers

by

Ehlers Danlos & Neurodiversity Research

I’m so excited, a friend of a friend just shared all this:

Dr. Eccles specific research areas are Neuroscience, Psychiatric and neurodevelopmental features of connective tissue disorders, Mechanisms of chronic pain and fatigue.

The quickest way to see a summary of all her 67 published medical research with active links to each is here: https://www.researchgate.net/profile/Jessica-Eccles-3

Some titles of pubs just within the last 2 years:

  • Towards a Neurodiversity-Affirmative Approach for an Over-Represented and Under-Recognised Population: Autistic Adults in Outpatient Psychiatry
  • Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain
  • Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health
  • Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression

You Tube Videos:

by

CalFresh

Info Dump mess – I want to come back and split this out to three different things:

  • CalFresh help since clearly there is a bunch of stuff available I found this time that I didn’t last time
  • Yelling at people who need it (I love Penelope Trunk, she yells at the world with her blog and you can pay her for coaching if you want her to yell at you privately, or take her classes if you want her to yell at others while you quietly think about how you needed to hear that – if you have a trauma background, you either are still avoiding being yelled at (read her blog so you can pretend she’s yelling at other people until you can’t resist commenting or taking a class or coaching session), you need to be yelled at but still hate it, or you recognize how helpful it is an love it.

    Oh, Penelope, that’s why we love you even if you think we hate being yelled at.
  • whatever other journal junk I need to clean out of this for those two

Stub

It took three tries requesting a call back on CalWin.

The most important thing I’ve learned recently is to say this:

I’m autistic and I KNOW my questions seem really stupid. I just need your help please.

I couldn’t say that without crying because it sucks to know how smart I CAN be and how stupid I WAS being because I couldn’t function at the moment they called and I knew I HAD to take the call.

I had to pull out a calculator and a blank document on my computer and do the math before they could answer my questions and then I cried again in relief that the solution was so easy.

The math:

If you are disabled and only get SSDI (see note below about cash help)

Then:

SSDI Amount
– Rent (LEASE amount)
– Utility exception of $500+
= Your income

If your income is 0 or negative, then you qualify for the maximum CalFresh benefit.

I had to ask the person three times and say that I was sending cash monthly and had a document in writing to the rental company promising to send the cash amount monthly before I believed them:

IF YOUR FAMILY IS GIVING YOU MONEY and you don’t live with them – THAT IS NOT UNEARNED INCOME.

Your rent is what your LEASE says the person ON THE LEASE owes, not how much of it you pay AFTER any help you receive. Yes, tell them about the help if you are doing the phone interview – so they can reassure you it doesn’t matter.

NO – DO NOT DO ANY MATH for them.

YOU DON’T KNOW THE EQUATIONS.

Or you got someone that sucked at asking questions. More likely, if you’re autistic, have an autistic relative, or think you’re smarter than the person you’re talking to – either you’re not or you’re a jerk.

Being stupid, admitting it and then thanking the person afterwards is better than being a jerk.

I thanked the person very specifically and heard a laugh of pleased surprise.

I know what that laugh sounds like, because I’ve heard it and I’ve made it enough times.

I said something along the lines that I recognized that the job sucked and didn’t pay enough and that they were doing it anyway to help people and to please keep doing it until they found a better way to help people.

Anxiety will lie to you that you can’t trust anyone. If you grew up with trauma, then you will have anxiety because that’s how you survived the trauma of your childhood.

The way you recover is that you figure out that humans are all trying the best they can to survive, and if they have anything left, then they start to thrive.

The way you thrive is to connect. And to connect you find people you want to listen to, or who want to listen to you.

You only need one mutual friend. You can be a friend to someone who needs you as a friend, and you can have friends that you need that don’t need you back. There are so many kinds of friends.

If you journal privately, you’re managing your anxiety.

If you write publicly, then you are sharing your truth just in case it helps ONE other person. So the things you’ve learned and experienced can help someone else the way you wish you had been helped.

Authors are telling the stories they need to tell. Popular authors are telling stories that many people wanted or needed to hear.

The internet has made it so we can tell our stories so many different ways so that any human can find the story they need.

I found the story of the worst of humanity and that I can see and understand the worst thing a human can do and forgive it – because that is how much they suffered and are suffering.

I understand why Nonviolent Communication is the name that author chose. And I understand why people call it NVC because they want to help people who need to learn to communicate, but are too far from pain and trauma to understand it, or too close to tolerate it.

I’m so glad that people exist that can’t even imagine existence being so painful that you don’t want to exist anymore. I was shocked to learn that my father-in-law is one of those people.

Either you understand suicidal ideation, or you don’t.

I don’t know if my husband does. I know I do and I feel sorrow because I think my child does too. I do know my father in law doesn’t. He was so confused when I asked him if he had ever WANTED to die. Like, couldn’t even imagine understanding why any human would want that level of confused.

These people are working for crap pay dealing with us at our worst because they either want to or are willing to help. If you think you’re smart, then recognize that they are the experts here and you need to trust them

You’re not being honest or helpful by “doing the math” for them, you’re giving them the wrong numbers.

Don’t bother trying to call and wait – they have a 500+ backlog as of today and every time I tried to call and wait I was 40+ in the queue and never got to a human before the call dropped after 2+ hours on hold.

Go on CalWin, request a call back on Monday, if you don’t get one or miss the call, request it again the following Monday.

Right now the state has been sending emergency aid and you might have more on your EBT card than you realize, just go try to use it or:

CalFresh EBT Balance and Login – California Food Stamps Help (icaliforniafoodstamps.com)

If you can’t find your card – report it as lost: EBT Card

People are trying to help. And the more ways we try to help, the more people we will help.

When I was functioning, I didn’t find this site, but I did look all this up on my own, so I knew my family member qualified for the maximum and was getting only 1/10th of that amount.

We got a person at some point, and they pointed us at the form to fill out and upload on CalWin so that I can talk on behalf of my family member without them having to be present to give permission each time. You can give any adult you trust permission to apply for you.

by

Names, Face Blindness and Gait

Are you bad with names or do you have face blindness?

What is face blindness anyway?

Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces

Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development. 

…treatment should be to help the individual with prosopagnosia develop compensatory strategies. Adults who have the condition as a result of stroke or brain trauma can be retrained to use other clues to identify individuals.

Prosopagnosia can be socially crippling.  Individuals with the disorder often have difficulty recognizing family members and close friends.  They often use other ways to identify people, such as relying on voice, clothing, or unique physical attributes, but these are not as effective as recognizing a face.  Children with congenital prosopagnosia are born with the disability and have never had a time when they could recognize faces.  Greater awareness of autism, and the autism spectrum disorders, which involve communication impairments such as prosopagnosia, is likely to make the disorder less overlooked in the future.

Prosopagnosia | National Institute of Neurological Disorders and Stroke (nih.gov)

I don’t know if I can recognize faces or if I rely on gait, silhouette, voice, hair, clothing (accessories or style).

I can’t tell if my kiddo has it because when we look at photos either the kiddo doesn’t know who is it or someone has said who it is once ever and now it’s memorized.

Is that why my kiddo had such a strong aversion to live action tv shows and videos for so long?

Is that why I hated when my mom changed her hair style growing up – in addition to it being change, did it also make her harder to recognize?

Is that another reason that a limited wardrobe or a signature accessory is useful/preferred?

Do any of you recognize people by their gait?

This study is telling clinicians to look at how autistic kids walk to figure out how they feel since autistic people have such a hard time saying how we feel.

A friend said: faces have so much information on them that I can’t sort fast enough and I like recognizing people by their gait.

https://www.sciencedirect.com/science/article/pii/S1877050915038065

by

Pain and The Bad Place

When I notice that I’m thinking painful and likely untrue thoughts, I think of it as my brain trying to go to or already in The Bad Place (aka: negative sentiment override, assuming the worst, being pessimistic, running a maladaptive schema, bad programming, telling yourself bad stories, feeding the bad wolf, sending out negative energy, trauma response, being triggered, starting to get flooded).

When I am in the Bad Place I can still function, but only just barely. Others see it as me being rude, inconsiderate, stupid, ridiculous, mean, unkind, self-centered, selfish, stubborn, bossy, pedantic. I’m trying to get into the habit of wearing noise cancelling headphones so I can tune out other people until I’m functional again. So far just keeping my mouth shut as much as possible if I’m in the bad place is working ok.

Headphones would help, I’d need active noise cancelling headphones: Bluetooth, comfortable.

by

Small talk scripts

We realized that the kiddo was either bursting into song or making up zany stories because they didn’t know how to respond to “What did you do yesterday/this weekend/this morning/etc.?”

So here are some options:

  • I don’t remember.
  • I can’t recall at the moment.
  • I forget.
  • Nothing interesting/too interesting/special/worth talking about.
  • Not much.
  • The usual.
  • I’m not sure, let me ask <person>/check my journal.

Follow up these types of responses with:

  • What did you <repeat their question>?
  • How about you?
  • Enough about me, what about you?

Or for people you are closer too or will interact with more often, you can use something like this instead:

  • I’d rather hear what you did.
  • Why do you ask?
  • Is it ok to skip the small talk/formalities?
  • I wonder if you’re asking to connect, and if so, can we just hug/sing a hello song/<other ritual of connection>?
  • Nothing I want to discuss, can we talk about <topic> instead?
  • Do you actually want to know or are you being polite, and if you’re being polite, can we pretend I gave a polite reply?
  • I acknowledge and accept your bid for social engagement, let’s go play!
  • Socially acceptable response of your choice.
    • The above one is best used with someone familiar as it is more flippant than polite.

Notes for NT folks, if you get an unexpected response, you have two choices: get offended or get curious. Please choose curiosity and kindness. Some options that might help:

  • Wait, I’m confused, did you hear my question?
    • Do you want help with answering it?
  • Hmm, I wonder if you are having trouble answering my question?
  • Does this mean you’re ready to get going/started/skip the small talk?
  • I feel sad/hurt/disconnected when I don’t get the expected response to my bid for connection. Is there some way you feel comfortable acknowledging that I’m trying to connect?
by

Self – You’re the problem

While I can’t dismiss that there are more influences than just me, I’m finding again and again that whatever maladaptive thing the kiddo is doing, if I slow down and ask where it came from? It me. /facepalm

Tries to solve perceived problems without help? Yup

Ignores or hides pain instead of sharing and asking for help? Yup

Assume the worst or focus on what is missing instead of what is there? Yeah. I’ve been aware of and working on this, and I realize now I still have a loooooooooooooooooooooooooooooong way to go.

Ignore other people’s boundaries if they aren’t clear and direct? Ugh, yup! They should still be clear and direct. And I could tell people that I need them to be clear and direct so I don’t miss what they are trying to communicate.

Not express my boundaries clearly, kindly and firmly? Definitely me.

Struggles to do things that are boring or anxiety inducting? Oh heck yeah that’s me.

And now I think my meds have worn off cause I’m ready to keel over and sleep. On the plus side, the ice pack and stretches have helped my head pain.