#aac

I don't think that anyone has been concerned about what the support needs terms and the people behind these terms consider as support needs. Even though i am not a part of the group who invented these community terms, i still want to share my opinions and perhaps address some concerns about what support needs actually, and directly, considers to be a support need.

This issue was compounded last weekend, when a creator suggested that her job and her usage of the GPS systems on her car were considered support needs. The same creator suggested that hypersensory, amongst other things, be considered as support needs while ignoring that a majority of us consider our struggles with things like IADLs and BADLs too, if not with more importance than for things like whether or not we just fit better within a certain support needs label community or not. That person's opinions came from a lack of education, and a lack of awareness on the wider online autism community.

This person, through rather unintentionally, has caused direct harm to people with autism by sharing these thoughts. Her perception of her life and of her lived experiences are valid, but what should be valid are the experiences and the considerations of people who are autistic and also especially marginalized, even just by skin colour, sexuality and the presence of other disabilities as well. Because what she shared was basically misinformation, which indirectly invalidates the struggles of even those who are low support needs to medium support needs, never mind those with higher and the highest possible support needs as people with autism. Especially of people with higher support needs than what the general community has, importantly online where this creator shares her content and her life with.

For most autistic people, finding a job and keeping said job is harder. But that is double the time harder for people with medium, and triple times harder to nearly being impossible for autistic people with high support needs. I'm sure that everyone with autism has had a very difficult and stressful time being an adult, especially when they're focused on finding and obviously also keeping a job, especially in this current economy if you live in countries where the job market is struggling more than normal. I mean not even autistic people and other disabled people are the only people struggling to find jobs, people without disabilities and non allistics also struggle with finding jobs either and there is further importance placed on getting a job as prices increase with each year it seems like. What i am saying here is that you're not alone, and that saying that it is a support need is not true when it comes to disability related support needs.

The same goes for driving, with or without needing to use a GPS to help get around in car centered societies such as the one within the United States. Sure, autistic people do struggle with driving as direct results of them having autism, as autism is inherently a disability no matter your support needs label, but needing a GPS does not signal that someone is autistic, it is something that everyone has and uses. Including neurotypical people. There is a reason that every car has an ability for the driver to use GPS, and that there is another reason why i would be honestly surprised if any car has no ability for GPS to be used at all because the car itself doesn't support that software for a reason or another, of course if it is a newer car model. What i mean to clarify on is that in this modern age, every single new car has GPS and other technology installed, not that every single car dating from when we did not have GPS is included here.

If an autistic person has a car that doesn't have GPS, like old cars where people had to use physical maps to help themselves get around instead, that is still not a support need. As people have either used context clues on the roads that they're on to get around, or they have used a physical map like i have seen people talk about using. It's difficult from my perspective, yes, but i don't think that struggling with using a map while driving is atypical or anything to do with disability because there is a reason that we have developed GPSes to use. Because neurotypical and non allistic people have struggled as well, and they have asked their passengers to help them out or have found out other ways to get to where they need or want to be. I just wanted to clarify on the point of old cars, because i don't want anything situations to be left untouched in this topic.

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I spent most of the day with my best friend yesterday (after not seeing them for over a year) and certain things have changed since seeing them, like me having an AAC device. I still haven't felt comfortable enough to use my AAC with them (it is harder to use my AAC with people who know me because they know I technically can speak). And so, I forced myself to speak, even when it was becoming exhausting, because for a good amount of time, it wasn't as draining as usual, and it was bearable.

But, I realize that it wasn't the exhaustion from speaking that made me realize just how much I need to use my AAC and need communication support overall...it was that even though I was pacing myself to speak, wasn't rushing, and actually stayed within my body for most of it (not much dissociation/disconnect from what I was feeling and thinking), I still struggled to get my thoughts across in the way I wanted to.

It wasn't the exhaustion that got to me. It was how much I kept struggling to pronounce words (getting stuck on them), how much I kept mumbling and speaking too low because I struggle a lot with knowing how loud I am speaking. It was how much I struggled to translate my exact thoughts into verbal speech without anything becoming lost.

It was how I could not verbalize or communicate things I felt and could only understand visually. It was how much I kept saying things in a way that I did not mean to say; saying things in ways that lessen the clarity and makes it seem like I don't know what I am talking about or trying to say when I do in my mind. It was how much of my extensive thoughts kept becoming shortened through speaking.

It's not the exhaustion that makes me validated in seeking and using AAC. It's how I literally cannot rely on verbal speech/mouth words. And I have been feeling how frustrated I truly felt within while it was all happening (I processed the feeling late, after they left back home). It just reaffirms how much I need my AAC, like....so much.

I have been seeing people offline and online say that autism is an invisible disability. And while, for cases in which people are masking or if their struggles just aren't that severe enough to be noticed by an average person, autism can be rightfully considered an invisible disability, people have forgotten that not all autistic people are invisibly disabled as a result of their autism.

For example, they might have higher support needs, higher medical needs, and have comorbidities that could make their support needs more intensive and thus, more visible. Especially for those with high support needs, severe to profound autism, lower functioning, and/or level 3 autistics. I have heard of people within this community talking about people who don't mask their autism and stim, for example, when they used to mask and would hide their stimming. Of course, this is just one example out of perhaps dozens more that don't just touch on stimming as a sign that one is unmasking their autism. I am sure that there are people out there who surely unmask by stimming when they didn't or couldn't allow themselves to do so before when they were masking.

Anyway, as i have said in the first slide, people who have been unmasking their autism in various ways have been shone a spotlight on. Meanwhile, the autistic people who haven't gotten attention and proper representation are those who are in need of 24/7 supervision, with high/complex support needs, and those who can't do things like BADLs and IADLs by themselves. The people who are visible, in the terms of stimming loudly, having meltdowns, having a weird posture when they are walking or standing or both, et cetera. Those who need caregivers, and need an AAC app to communicate because they can't speak by mouth at all. These people are being left out of the conversation by people less affected and less unable to do things like talking, using the bathroom by themselves, feeding themselves and more, and as a result there is a debate going around that autism is an "invisible" disability.

Again, while that is true for the vast majority of level 1s, lower support needs, and higher functioning autistics, that doesn't mean that autism is a or will be an invisible disability. If anything, the people with lower needs are still spotted but not seen as disabled, but only seen as freaks and weirdos because of their mannerisms that aren't how neurotypicals typically move and go about their days. Now i am not saying that level 1s and level 3s are the same in terms of being spotted by neurotypicals, but that both levels still have something "off" or "freakish" about them regardless of if either is a high or a low masker. For people with lower needs, it's because of their social awkwardness as i've come to observe that tips NTs off in most cases, but it is oftentimes quite visible when an autistic person has a caregiver, AAC device, or is just stimming loudly for some examples.