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AAC for Primarily Verbal People

Recently over the last month I went through a period where using my words was a massive struggle, and I relied primarily on AAC to communicate.  My girlfriend (I know I used to identify as aro, but I no longer feel that that label is accurate for me) who is also autistic, was confused and had a hard time understanding it.  How could I go from talking just fine to needing AAC?  She felt like I was giving her the silent treatment and struggled to accept it at first.

I explained that it was like someone with fibromyalgia using a wheelchair to get around.  Technically they could walk, but it causes a lot of pain and requires a massive effort to do so.  That’s how I feel when I use AAC; I can talk, but doing so is painful and requires a lot of effort on my part, so I use AAC instead, and that’s okay.

this analogy resonated with my girlfriend, and she compared it to her difficulty with fine motor skills due to dyspraxia.  She can write and manipulate small objects, but it’s very difficult to do so.  She realized as a result that she might also benefit from the use of AAC, as her dyspraxia affects her oral motor skills as well, and she often has trouble finding and pronouncing the words she wants to use.  I let her test out the text to speech AAC on my iPad, and despite her difficulty with typing, she liked it.  It took her a while to get over the lessons society had taught her about “not needing” and subsequently ““not deserving” to use AAC as a support, but once she overcame these internalized biases, she became more comfortable using AAC for her own needs, and is consistently making use of it these days.

All this is just a reminder to my autistic and neurodivergent friends that you don’t need to have no useable speech skills to use AAC.  It’s for everybody, and everyone who wants to use it or feels they would benefit from it deserves to have access to it.

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PS post. Just a mini rant.

Saw my sister rapidly texting RP and both were so responsive. I wish I was better at being responsive too. I hate how bad my social skills are compared to my sister or my parents!

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My Experience of ADHD

I’m putting this here in case there’s anyone else wondering if they could have ADHD and considering whether to pursue a diagnosis.

My symptoms have largely remained the same since childhood, although I believe my hyperactivity has gotten worse as I’ve gotten older.  My traits were and are as follows:

- Spacing out and not paying attention to directions/instructions and losing large chunks of lectures at school and conversations on the phone.

- Impulsively spending money, unable to delay gratification in order to budget or save.

- Terrible organization, leaving things a cluttered mess and unable to find anything.  Frequently losing important things.

- Great difficulty starting boring or uninteresting tasks; leaving projects half finished, losing motivation part way through or procrastinating until the last minute.

- Fidgeting and having a hard time sitting still.

- Focusing for hours on areas of interest to the exclusion of all else.

- Having a thought that I need to do something, getting sidetracked by something else, and immediately forgetting to do the thing.

- Needing to keep to a strict routine so I don’t forget about appointments, errands, etc.

- Habitually late; always remembering one more thing that needs to get done or fetched at the last minute.

These are my most prominent traits, and they impact my ability to lead a life that’s not full of stress, anxiety and frustration.  If you think you might have ADHD, please talk to your doctor about a referral for an evaluation, thank you!

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Welp, I was Wrong...

A couple of years ago I wrote a post about how I didn’t have ADHD because that’s what the evaluation I went through said.  However I wasn’t fully convinced, because I was still having difficulty with executive functioning, time management, remembering to complete tasks, getting motivated to do uninteresting things, and generally just not being a hot mess.  So I decided to go for a second opinion.

After taking a thorough history and giving me IQ tests, tests of attention and impulsivity, academic achievement tests, and a number of self-report measures, the specialist I went to see did diagnose me with ADHD combined type.

I don’t know how to feel about this.  On the one hand, it’s nice to be validated in my experiences and to get proper confirmation of my suspicions, but on the other, it sucks to be told I have yet another disability, something else abnormal about my brain.

I guess I’m mostly writing this to let others know that a first assessment can be wrong.  If a psychologist tells you you don’t have something, but you still don’t have a good explanation for your experiences, it’s okay to seek a second opinion.  Third, fourth and fifth opinions start to become doctor shopping, but having a second voice chime in on what you think is going on can make a world of difference.

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Meltdowns VS Panic Attacks

This is going to be a bit of a PSA on the difference between meltdowns and panic attacks, because there are many out there who don’t know the difference.  I will describe how each of these looks for me, but keep in mind that everyone is different and has different symptoms and triggers, so what looks like a meltdown in me could be completely different from someone else’s experiences.

Panic Attacks:  I don’t get these very often.  They usually occur as a result of something triggering my PTSD, like hearing voices or noises outside my door, being followed too closely by a stranger, having someone touch me unexpectedly from behind or seeing or hearing reminders of the event that caused the trauma.  

My panic attacks cause me to hyperventilate, freeze and go rigid, or run and hide behind the nearest door or object.  My whole body shakes and I can’t catch my breath; my extremities tingle, cramp and go numb from the excess oxygen caused by my heavy breathing.  I feel outside myself, like I’m observing the world from a distance, and I get nauseated and feel sick.  These usually last until whatever triggered them has abated, or until someone helps me get my breathing under control.

Meltdowns:  I get meltdowns a few times a month, and they are most often the result of sensory overload.  I am very sensitive to loud noises and crowds of people, and being surrounded by them for too long can trigger a meltdown.  They can also be caused by emotional distress, most frequently anger or frustration, and sometimes anxiety or confusion.

For me, meltdowns feel like an explosion inside my chest and stomach.  I hyperventilate in an effort to gain control over the intense rage or panic I feel, but it’s not the out of control “I can’t breathe” hyperventilation I get with panic attacks; it’s a deliberate attempt to calm myself down before the feelings erupt.  Next I’ll start stimming hard with my hands; flapping, clapping, squeezing, wringing my fingers, anything to keep my hands occupied so I can’t hit myself.  If that doesn’t work, I’ll start banging my fists on my legs in an effort to externalize some of the internal pain, and that most often rapidly devolves into head banging and yelling.  I don’t say anything, it’s more of an animalistic wail, the kind people make when they’ve injured themselves and are in great pain.  If the head banging isn’t enough, I’ll resort to biting my hands and fingers in an effort to let off steam.  At this point, if anyone tries to touch, talk to or intervene with me in any way, they are in danger of being lashed out at physically.  I feel scared and trapped, and other people only make the sensory problems worse.  The only two things that work to end a meltdown for me are restraint and/or time.  If I’m left alone, the meltdown will burn itself out and I’ll crash with exhaustion, but not until I’ve done some significant damage to myself.  Restraint when done properly can also end a meltdown, because it creates a deep squeezing pressure over my core and helps me calm down.

Sometimes panic attacks can turn into meltdowns.  If the fear I’m feeling from a PTSD trigger is great enough, it can cause me to lose control, as it feels like the world is ripping apart at the seams.  I’ll hit myself in a desperate effort to regain control of my body and emotions, and those first strikes can quickly escape my conscious ability to stop when I want.  It feels like riding down a hill in a wagon; there are no brakes, I just keep going faster and faster until things level out for long enough or I crash into something on the way down.

The important thing to remember when you see someone having either a meltdown or a panic attack is that neither episode is within the person’s control.  We can’t just stop because you want us to, and we want it to be happening even less than you do, so be patient and kind, and if you interact with someone who has such incidents regularly, ask during a calm moment what you can do to help them, because getting frustrated or dismissive is not helpful for anyone.

Anyone with any questions about meltdowns or panic attacks is welcome to message me, and I’ll do my best to answer!

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“Professional Diagnosis is Pointless”

I’ve read a number of times on Tumblr now that “a professional diagnosis is pointless, it doesn’t get you anywhere, it just creates stigma.”  As someone who is functional at a basic level as a sole result of my diagnoses, I resent that claim.

My diagnoses gave me access to the financial benefits that allow me to pay my rent and feed myself.  They gave me access to the therapies that keep me from trying to kill myself.  They gave me access to the people who teach me the skills of daily living I need to maintain a semi-clean living environment and to cook actual food, rather than eating pre-made crap every day.  My diagnoses prevented me from ending up a starving homeless person with no prospect of a better future.

The only people to whom a real diagnosis would be “pointless” are the people who are functioning so well that they don’t require any kind of outside, medical, or financial help.  Those people, by definition, do not meet criteria for the disability they claim they can get by with a self-diagnosis for, because as I’ve said many times here now, the only symptom marker that exists universally throughout the DSM 5 is the fact that the traits of the disability must be significant enough to impair daily functioning.  If you don’t tick that box, you don’t have the disorder, even if you have traits of it.  I have traits of OCD, that doesn’t mean I have the condition.  Everyone has some traits of most conditions, the difference between those who have them and those who don’t is the extent and severity of the symptoms.

So, to the people who think a real diagnosis is pointless, I cordially invite you to go jump in a lake.

TLDR:  A real diagnosis is not pointless; it can make a lifesaving difference, and those who say it’s pointless don’t need it because they aren’t impacted by their symptoms enough to have the condition they’re claiming.

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Moon Pals

This is my new weighted moon pal, Bo.  He weighs about five pounds and as you can see, takes up most of my wing-back chair.  His legs and torso are full of plastic polyfil beads, as are his long arms, and his upper body and head are stuffed with regular stuffing fluff.  

I got him from moonpals.com, he was a bit expensive, but I like how his weighted arms can wrap around my shoulders and hug me, and he offers a nice weight on my lap.  

Moon pals come in five different colours; pink, blue, purple, green and orange, and they all have this alien bunny body shape.  They also come with a cute picture book explaining their origin story.  

To my knowledge, they currently only ship to the US, but if you’re in that area and looking for a good weighted plush, I’d definitely recommend moon pals.

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My Service Dog

This is my new service dog Star, she came fully trained from Freedom Service Dogs, who place dogs with autistic people, veterans, and those with mobility impairments. Here we demonstrate just a few of her basic cues, including one of her specialized prompts, "cover" in which she lays on me to provide deep pressure. The two of us have been working hard in our training class every day this week, and next week we will take our public access test, after which we will have access to the community as a team. If anyone has any questions about my dog, service dogs in general, or my program, feel free to leave a comment or send me a note, I'm very happy to answer them!

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there are many people who will never get dx'd or refused dx who need those services too. there has always been. acting like self-dx means "not actually disabled" is reductive and not true.

If you need services badly enough, you will get the diagnosis (referring in this instance to those who choose not to).  If you choose to forego the diagnosis, then your need for services is lower than your need or desire for whatever you chose to prioritize, it’s that simple.

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is it okay to call yourself autistic if you have been told there is a high probability you are autistic and you are on the waiting list for an for an assessment? the waiting list where i’m from is 3 years long

Personally I would use the phrase, “I think I’m autistic/have autism,” it’s more accurate.

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We Are Not The Same

To those of you who self-diagnose with autism but refuse to get a diagnosis, for health insurance, for family reasons, for whatever reason you want, we are not the same, you are not like me.

By refusing a diagnosis you are admitting to not needing services to get by, at school, at work or at home.  I needed accommodations all throughout public school and college, without them, I wouldn’t have made it through.  I needed job coaches to help me get the part-time minimum wage work I’m doing right now.  Without them I’d still be unemployed.  I need six different therapists, a home-care provider, a one-to-one support mentor, and an intensive recreational day program just to be able to live on my own and enjoy my life, and I still rely on my mother to do my laundry and grocery shopping.  You are not like me.

By refusing a diagnosis you are saying your symptoms are mild and virtually unnoticeable, because otherwise how could you hide from your family, or join the military, or do any of the things you say you’re avoiding a diagnosis for?  I have meltdowns in public.  I bang my head and sit on grocery store floors and hum and moan and run away from people who get close.  I stim obviously, regardless of where I am or who’s watching.  My hands flap, my arms flail, my feet bounce and skip and spin.  I squeal and bite my hands and flick my fingers and chew on things.  You are not like me.

To those who criticize me for “gatekeeping” and insisting that self diagnosis is not valid, this is one reason why.  I have never understood the point of self diagnosing and making the decision not to get professionally diagnosed.  It seems like posturing to me, like an attempt to lay claim to the label without truly having the experience, like Rachel Dolezal, a white woman who attempted to appropriate the black experience without ever having lived it.  To the self diagnosers who don’t want a diagnosis, all I can say is, you are not like me.

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This is Not Okay

When I ordered my emotions cards, I got ten extra random ones because I only needed 20 and the order was for 30. This is one of the cards I got.

Telling an autistic to have quiet hands is oppressive and harmful. We use our hands to communicate in ways that neurotypicals don't. For me, flapping and rubbing and twisting convey distress and anxiety. Shaking, flicking and clapping express joy and excitement. My face shows very little emotion, to know how I really feel, you have to watch my hands.

If the intended message of the card is "don't touch things that don't belong to you" there are better ways of expressing that, such as the phrase "hands to self" which doesn't have the ableist implication that the hands must remain still.

Never tell an autistic to have quiet hands, never mimic or mock them for the way they use their hands, and never grab their hands to stop them moving, unless the person is presenting a physical danger to themselves.

We are autonomous human beings just like you. We deserve the same respect and rights to our bodies as anyone else. Quiet hands are silenced hands.

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Autism and AAC

As those who have read my previous posts know, I am a part time AAC user.  I have an iPad with text to speech capabilities, and a “boogie board”, what amounts to an electronic whiteboard, on which I can write my thoughts and feelings.  I wanted to show you my new PECS (Picture Exchange Communication System) cards that I can use to nonverbally express feelings and needs as they arise.  PECS is a faster but more simplistic form of communication that can be very effective for adults as well as children.

Cards like these can be found or made.  I had mine made custom on Etsy by KeirasKreationsLLC, because I couldn’t find what I wanted being offered by mainstream sellers.  This is because most people associate PECS with children, and thus have very little that is appropriate for adults.  This is unfortunate because autistics of all ages can benefit greatly from this form of communication.  I will be starting a new day program soon, and expect to find my cards very useful there.

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“Special Needs”

I know the majority of disabled people dislike the term “special needs” to describe themselves, and that’s fine, they’re entitled to use whatever language they feel describes their disability best.  I have to say though, that for me and my situation, I don’t mind the term.

The fact is that I have needs that other people don’t have as a direct result of my disability.  I need physical and social support to control and manage my emotions.  I need help to bridge the gap where my executive functioning fails so that I can have a clean house and real food on the table.  I need guidance to support my poor social skills so that I can make friends and get a job and function in society like everyone else.  My needs aren’t mainstream, they’re not the same needs that an able-bodied NT would have, they’re special.  I don’t mean special in the superior sense, but rather in the “equal but different” sense.  My needs aren’t more important than anyone else’s, but they aren’t less important either.  My needs don’t matter less because most people don’t have them.

I am a proponent of the term “special needs” because I feel it’s an accurate way to describe the extra needs I have as a result of my disability.

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Autism as an Insult

It’s become increasingly apparent that “you’re autistic” has become the new “you’re retarded”.  People think it’s okay to insult others using our condition because we are seen as lesser, as unworthy.

It is a testament to the fact that autistics and others with neurological disabilities are not equal in our society.  We are spoken about as if we’re second class citizens.

It hurts my heart when I see things like “rhee” memes and “keep the special ed door closed” jokes.  I once searched for “autism memes” expecting to find amusing and relatable content from the perspectives of autistic people.  What I found instead was hurtful jokes that mocked us for being who we were and laughed at the things that made us different.  

I understand that different scares people, that they don’t know what to do or expect when we “act autistic” around them, but instead of hiding in ignorance, I wish they used half the energy they expend insulting and bullying us and educated themselves instead, learned more about us so we don’t seem so scary and mysterious.

I’m tired of being the butt of everyone’s jokes, of being laughed at for the natural way I move and think.  I want people to extend to us the same basic human decency we extend to them.  It’s not that much to ask.

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A Conversation About Stim Toys

I was perusing the stimming tag here on Tumblr when I noticed several discourse posts regarding neurotypicals using stim toys and whether or not that should be frowned upon.

I know the world only sees them as silly little toys, and it sounds silly and petty to try and gatekeep something so small and simple, but the fact is, they’re not just toys, and they’re not simple.

These toys are extremely important to the people for whom they were intended.  For an autistic or someone with ADHD, a stim toy can make the difference between a meltdown and a calm afternoon.  For someone with anxiety, it can mean the difference between a panic attack and a good day.  Strange as it may sound, I rather liken them to medical equipment.  A person who can walk wouldn’t (or at least shouldn’t) wander around on crutches just because they’re fun to use, so why do neurotypicals feel the need to appropriate and use our mental and behavioural supports as cutesy playthings?

This doesn’t even address the “cringe” factor.  Everyone knows what a mess NTs made of the fidget spinner fad.  Schools everywhere banned them within weeks because kids who didn’t need them wouldn’t stop playing with and being distracted by them.  This left the kids who actually benefited from the use of stim toys, spinners especially, without the adaptive equipment they needed.

You may see stim toys as just toys and think I’m being overdramatic when I refer to them as supports and adaptive equipment, but they literally are.  I get employment assistance from a job coach that’s paid by the state.  That job coach has a certain amount of money allocated to her specifically to pay for things that I need to be successful in the work setting.  One of the things she recommended for me, and bought with that government-approved money, was a stim toy.  A little handheld metal infinity ring that I could fidget with during meetings so I’d stop pulling on my clothes and kicking my feet and otherwise appearing unprofessional.

So, long story short, I do believe it’s appropriation, and I do believe it’s inappropriate, for NTs to play with fidget toys, particularly because they fail to understand the significance of said toys and the struggles of the people who need them. 

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What’s in my Bag: Autism Edition

I thought I’d share pictures of the contents of my “go bag”, which I take with me everywhere at the behest of my therapist, to make leaving the house easier and to try and mitigate meltdowns.  These items include: noise cancelling headphones; my boogie board; an exercise theraband, a therapy brush; a “chewzilla” from chubuddy; and a bag of sour chewy candy.  

I will eventually be getting autism awareness pins for my bag to liven it up a bit and to let people know I’m autistic and have special needs because of that.