Tag Archives: autism

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What am I avoiding?

I had a great conversation with a friend who was able to help me see what I’ve been avoiding.

Why it’s hard to write is because what I need to write is the stuff I’ve been ignoring or avoiding for so long. I have to stop and look at it instead of trying to outrun it.

I’m writing at this moment because what I should be doing is watching a video on how to get my ribs back in place. To be able to focus on that I need to be able to tolerate the pain and believe that it is worthwhile to take care of myself. That I should learn to prevent the pain instead of how to deal with it.

What I usually do instead is try to disassociate by absorbing knowledge or solving problems (puzzles).

I generally don’t share what my pain levels are on a day-to-day basis.

I’m trying to remember my earliest memory of pain. I remember the day I came in with a skinned knee. My kneecap solid red from blood. I can’t recall if it was dripping down my leg or just looked terrible because I had somehow scraped off all but the very thinnest layer. I don’t recall the pain either, but I do recall not feeling any until my mom reacted and then I freaked out crying.

In preschool and kindergarten I had long hair and my “friend” would sit behind me and braid my hair. She pulled so hard that it hurt, but it also felt so good that I was afraid to say anything in case she decided to stop braiding my hair because my complaints were so annoying.

I’m not sure if she was the same friend who died from cancer(?). All I remember about that was wanting to go to the funeral and being told that I couldn’t. My parents have told me they were trying to protect me. Instead, it taught me that what I wanted didn’t matter and I missed an opportunity to learn to handle grief with something other than avoidance.

I remember that we went to daycare and our caretaker would stick us out in the backyard to play. The trains went right by her back fence and they were SO LOUD and the ground and fence would shake so I’d cover my ears and crouch down into a ball until it passed. I know I didn’t like her, but other than that and her saying my hair was too short and my brother’s was too long, I can’t remember why.

I know elementary school is when I fell off the play structure and if I’d been any shorter probably would have broken my neck. I was climbing the ladder, slipped and landed standing on my feet with my chin on the platform the ladder was attached to. I bit my tongue painfully and barely noticed the pain in my knees and ankles from the landing.

In first grade I remember standing by my teacher and she told me to stop sighing. I remember saying I wasn’t sighing, I was just breathing. I think I was mouth breathing at that moment, but I realize now that I wasn’t getting enough oxygen to my brain, so I kept taking deep breathes every once in a while. So I got the message that even my breathing was wrong and annoyed people. Even the people who “liked” me. I was definitely teacher’s pet, so that really hurt emotionally. She didn’t ask me what was wrong or why I was sighing, just told me to stop.

Writing that, my rib has been hurting this whole time even with the heat pad. And then my elbow started hurting too.

I had a best friend in first grade and we would play house. A third kid who everyone found annoying would ask to play too and we usually said yes, but he had to be the baby while me and my friend would be mama and papa and play house. I think we just bossed him around or tried to find ways he could play . I remember that we kissed once because that’s what the older kids did when they had “boyfriend” – and I never saw him again after first grade because his mom sent him to an all boys school because his assigned 2nd grade the following year was known to dislike boys. All the girls had gone to kindergarten together and already knew each other, so it felt especially difficult to join their social groups.

I think second grade was the year I didn’t really try and would do homework but not turn it in or just not do it. I think I couldn’t keep up with the organization needed that wasn’t necessary in first grade. I remember the teacher liked me but was worried about me and I was getting bad grades. I don’t recall how that resolved.

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Parenting – Video Restrictions

Videos – not a need, a want

Even if they are a coping tool, they are not a reliable or adaptive one. They are maladaptive in that they make you more dependent, not more independent and they reduce your ability to focus by deliberately trying to catch and keep your attention.

They can be very entertaining and help us learn and explore, and if we only learn and explore that way, we are missing out on other forms.

Either don’t watch or watch responsibly/deliberately/intentionally/mindfully.

Why? To avoid seeing something horrible that cannot be unseen.

To do responsibly:

Watch with (supervising authority) or watch only ones from subscribed channels – (supervising authority) needs to approve, double check if kid added subscriptions. To ensure one of those two:

Before starting a new video, tell (supervising authority) how long the video is, who it’s by (confirm that it is subscribed/approved or request supervision if not) and set a timer for the video length.

This is to avoid losing time watching one video after another with no deliberation – at the mercy of the algorithm. Kid has gotten very upset before at losing track of time watching videos and requested help making sure it did not happen again and that no more than 5 hours a day was spent watching videos even on the weekends. Kid wants to make sure they have a diversity of experiences (we use Trello for tracking things that we don’t want to forget and can’t do right now).

This method did not work because (supervising authority) was not capable of enforcing it yet and kid wasn’t capable of following it yet.

Kid and (supervising authority) agreed that we would only use YouTube kids, or YouTube on kid’s google account so that it can be restricted. Kid’s google account can only be used on kid’s user account on the tablet – this is a software limitation.

Right now kid can still access (supervising authority)’s account on the tablet. If kid cannot stick to using YouTube kids or YouTube on their account, (supervising authority) will have to change the password so that kid can only access his account.

(supervising authority) will need to work on moving game data over from their google account to kid’s. Kid will need to work on being patient or helping around the house so (supervising authority) can move the data.

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ECHO, Echo, echo…..

Echolalia is functional communication. It is often an indication of gestalt thinking, if you search for hyperlexia or hypernumeracy you might find more information.

Possible functions:

  • practicing verbal skills
  • auditory stimulation (stimming – it just sounds good)
  • communicating – if we’re not understanding, we’re not listening/paying enough attention or we need training

One example is my kiddo would say the exact same line if they thought that I wasn’t listening, or wasn’t understanding, or wasn’t giving the response they wanted/were looking for.

So now I’ll say:

“I’ve heard you say that multiple times now, did you miss my acknowledgement (either verbal or visual) or are you looking for a specific response or does it just sound good?”

<reply>

“Great, thanks for letting me know!”

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Autistic employee goes viral with office sign that breaks down ‘bad communicator’ stereotypes – Upworthy

I’m autistic.

I prefer direct, literal and detailed communication

If I am:

Not making eye contact

Not greeting you back

Not understanding your social cues, etc.

There is no malicious intent. It is the autism.

Thank you for understanding.

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

“This should be the norm tbh!! very proud of you for stating your boundaries and needs clearly,” Alastar wrote. “I wish everyone had signs telling me how to communicate tbh,” Bro added.

“How is it that we prefer direct, literal, and detailed communication, but somehow WE’RE the ones with a communication issue???” Reading cosmere! wrote.

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

“The funniest thing about the comment section of my autism sign video is the people who are asking me, ‘Are you self-diagnosed? Are you formally diagnosed?’” he said in the video. “Do you think neurotypical people would make a sign like that? Do you think that would happen? Do you think a neurotypical person would do that?”

https://www.upworthy.com/autistic-employee-called-a-bad-communicator-responds-by-hanging-an-important-sign-in-the-office

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Metaphors, Idioms & Abbreviations

For when meaning goes MIA.

tbh – to be honest – used to express a person’s own personal opinion, instead of the perceived generally acceptable opinion

In a minute – used to ask for a tiny (minute: my-newt) amount of time, not a measured minute

It’s helpful if instead you can say:
In a moment
Give me a few minutes please
I need a few more minutes
I’ll be done soon
Please wait for a little bit

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Is she fine, or is she masking?

I keep meeting folks who have one kid diagnosed but other kids that aren’t. There is relatively strong evidence that it’s genetic/hereditary (Genetics of Autism Spectrum Disorders – PMC (nih.gov)) – enough that I’m not sure why folks aren’t told to automatically have all siblings evaluated.

I’m 42 and just now starting to figure out who I am and who I want to be, I spent so long masking so deeply that it’s taken over two and a half years to start to realize that I don’t need to do things I “should” to be “normal” or “fit in” – a recent example was telling my best friend that I don’t like eating at restaurants, most of them are sensory nightmares and that I would stay home and happily wait while the others went out. It’s so nice to be able to say no to things without feeling guilty or like I need to explain or give reasons.

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Auditory Processing

Auditory processing difficulties might require lip reading instead of eye contact.

  • I saw a study tracking eye movement while watching movies that found that autistic subjects tended to watch mouths instead of eyes (to link)
  • I have family members that lip read to assist with auditory processing
  • most of my family turns subtitles on for anything that has the option – which is a lot more now than it used to be
  • I have trouble processing audio on a phone call, less so if I’m familiar with the voice
  • another family member recognizes people by voice instead of face, I tend to recognize silhouette and gait – not sure if that counts a face blindness? I think I recognize faces in photos, but it’s hard to determine if that’s based on knowledge/memorization of the photo/deductive reasoning or actual recognition
  • ADHD plus sensitive hearing means I have a hard time or find it impossible to tune out other conversations – I can often track up to three conversations (though not participate in) but beyond that I suddenly can’t understand anyone
  • I really really really dislike being in restaurants except for ones that have high back booths that block the surrounding sound
  • the hum of fluorescent lights is horrible
  • I hate vacuuming – not because of the volume, but because of the tiny changes that sound like something is or is about to go wrong with the motor
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Neurodiversity Advocacy

Here are some great advocates with amazing communities – though some of them may not recognize that being an advocate for Neurodiversity is what they are doing. Just by being their authentic selves, being neurodivergent (again even if not recognized), and welcoming others to share their diversity of experiences, they are showing that diversity is not only ok, it is beautiful, incredible and resilient.

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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.

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Hyperlexia

This is another stub to update.

I heard a very interesting thing this last week from Penelope Trunk, this is a paraphrase: females on the spectrum focus on words and language because it is comforting and makes sense. So we’ll read just about anything and we’ll re-read books (which almost no one does apparently?). That was definitely true for me. I only found out about hyperlexia from And Next Comes L – Hyperlexia Resources sometime between 2020 & 2022. And then I found out that I taught myself to read when I was 3. I have quite a few stories about my reading, but definitely I met VERY few books that I couldn’t read even if they were kinda meh.

I have always known I’m a visual thinker – I need to see an image or words to attach to a memory. Which is especially funny since I even more recently found out I have complete aphantasia.

I recently realized I was hoarding books in part due to poverty mindset paired with anxiety, but also because they were my friends during my childhood. And even if they made me mad or cry, they still were kinder to me than my peers.

I’ve also noticed that since starting anxiety meds I’m doing drastically less “pleasure” reading and being much more selective, so the idea that words/books/reading can be used as a coping tool seems very reasonable to me.