if you want to improve the lives of autistics, we need to make the world communication accessible

All to often I hear how parents want to improve the world for their children, how they want to make their autistic kids lives better and easier, fretting over their future and independence but, here’s the thing If you want to improve the lives of Autistics everywhere and make the world more accessible for us then you need to start with communication access and building a communication accessible world, also improving sensory accessibility is critical and just as critically vital and important, but for right now I’m going to focus on communication. Right now everything in society is built around accommodating and improving the lives of people who use mouth words to communicate! All the cool high tech things are all based on being voice activated, and society as a whole is built around speech. while the new tech is impressive the vocal speech geared focus needs to change and a shift needs to be made to also encompass features and communication options for non speakers, Even from early childhood the entire focus is on obtaining spoken vocal speech in lu of other communication support, this is not only counter productive, as providing AAC and communication supports has repeatedly proven, in multiple studies to aid in vocal speech development in children who will eventually develop speech, but it is out right cruel harmful and detrimental to the child mental physical psychological health, as well as directly harms their development and well being. This needs to change. AAC needs to start early as possible and needs to be accessible at all times, moreover we need to change the world to help all non speakers flourish and thrive and have equal. We need to build a non speaking accessible world!  

So how can we do this? What can you change right now to improve communication access? How can we as a society change our shift to communication access for autistics and everyone? Below are some basic ideas and far from all of them! 

We must first start with communication access being seen as a basic right everyone has! And we need to shift how we approach Autism in early childhood, the primary focus for parents in an autistic child’s early childhood should focus on finding, seeking out, providing, teaching and modeling communication supports and options that work for their child! AAC should be started as early as possible, it should be tabo to wait till 3 to start working on finding the right communication and as early as 26 months or earlier should be seen as common sense time to start with AAC for a child. Having backup supports even for people with decent to excellent speech should be considered a default common sense thing to do and failing to seek out AAC or taking away or removing AAC from anyone should be seen as horrifying and repulsive as taping someone’s mouth shut and binding their hands or other horrible graphic things! It is never ok to take away AAC even if all the person says is random sounds with it! 

Next let’s address things like apps and businesses 

Apps and devices

Phones and and apps have developed a lot of really cool and neat features for the speaking community! Bixby, ok google, and echo are all really really cool but we need businesses to focus on making neat features that are awesome for non speakers as well. We need ways to access these things that don’t rely on mouth words there are many access ways that would be great to do this!

Eyes gaze and head movements , give us access with our eyes! Getting eyegaze or head tracking would be huge! Not only will this make devices accessible for people who flatout need eyegaze or head tracking it would also open up a hands free option who are less likely to those of us, like the autistic community who be considered for it and for non speakers in general! This would open up a world of hands free accessibility to our phones and devices!

Gestures: on the same idea as head tracking and eyegaze It could be more customizable to have a certain movement or wave mean x or y, nd on the theme of gestures...

Asl tech for bixby echo ok google alexia ect! Training these Siri, bixby, eco, ok Google ect.. to read asl would also be huge and would again give yet another method for not only non speakers but also the deaf community to use and enjoy these services and features!

Having the ability to train it to recognizing certain sounds means to activate certain things would also be really useful tool for some of us?

Type to Siri, bixby each ect, while Siri and ok google already seem to have the type to option bixyby and Alexa still seems to need to add it and I don’t know how you’d type to echo, but this is a good and worthwhile feature that should be added, it doesn’t give us the same hands free capabilities as the other options but it should be easy enough to set up and gives accessibility.

Recognizing AAC, finally improvements allowing these products ability to recognize and reply to AAC voices reliably would be huge for many of use! 

Schools, schools need to work on normalizing and integrating AAC and communication supports (and reading supports) there needs to be visual schedules, PECs and all students should be given letter boards regardless of their speech and communication styles,  

I shouldn’t need to say this but schools also need to provide books materials and all their signs (yes every random ones you hang you word word of the day) in Braille!

Another really big and important thing schools could do to implement and support communication access and help AAC users is to provide in class, in school AAC to all the students! Yes that’s right you heard me, I want schools to provide devices loaded with high tech comprehensive AAC apps like proloquo2go, lamp, speak for yourself , and cough drop to /all/ their students, and for them to teach students early both how to use them, support and validate every students use of them, allow students to switch between speaking and using AAC and to teach both picture sentences and typing to speak! And I want these devices accessible at all times to all the students, yes I realize this is expensive and will be seen as radical, but for once I want to level the communication field I want to normalize AAC, I want to normalize shifting between using AAC and speaking and going back to AAC, i want nonspeaking kids to see their peers use this too, we need to start early building a culture of communication support and acceptance. 

Community/ Businesses 

Picture menus picture menus would be Huge in not only helping me figure out what the food options are but in quickly selecting what I want. Picture card menus would also be useful esepcailly places such as coffee shops and having things like placeMats and counter Matt’s with a letter board and some images for things like "yes" "no," " something else,". "Thank you,". "I have an allergy,". Ect would be amazingly helpful 

Auditory based menus, in addition to picture menus it would be good to have some ability to click on the the menu option or photo and have it read out loud to you, especially to read the ingredients, don’t assume because someone is non speaking and uses AAC or types or uses a letter board to speak that they are good at reading. plenty of us also have other co occurring disabilities, I often struggle in new restaurants due to my reading disabilities and have people I’m with either read to me or I order based on their food choices, so having a way to have the menu be able to read to you would be huge. 

On that note I never see Braille menus this needs to change I don’t use Braille but come on! If we are building a communication accessible world you need to offer all your materials with the option of Braille 

Menu app idea: Really an app which picture menu that will not only read to you what the items are and what’s in them but all lets you select what you want, and say " I would like a steak tips rare, "no pepper ," and also have a section for allergies and having some way to send the info directly to a device with the meal ticket for the waitress would be huge! 

Cognitively accessible resources and materials, I shouldn’t have to point this out but it needs to be said,everything, i mean everything all materials should come with cognitively accessible options, from menus, to news papers, to forms, to things like loan and insurance information, I mean let’s be real here for a moment, Loand and insurance information should legally be required to have extra cognitively accessible versions of their information that doesn’t hide facts. And literally everyone would benefit from that, non disabled people with no cognitive or neurological impairments would probably be in shock at how much more understandable things are and way happier and life would be much easier. 

Events And meetups ect,

 this is where you need to pull it all together you need to consider location, you need to provide cognitively accessible materials, for any sort of event you are planning be it an acceptance, pride day, a march a protest or a seminar, you need to consider AAC users. Sending out materials a week or so ahead of time for "this is what you can expect, " is really important, in those materials you should also include things like any scripts AAC users may need to program in pro our devices 

Location: When it comes to planning a location accessibility can be hard keeping AAC users in mind for these is really important it is really hard for us to be heard in really loud environments so if you are wanting to do a disability based meetup or event choosing a place with good sound insulation that isn’t too loud is really important, places like bars and pubs are not generally easy to be heard in, not to mention generally sensory unfriendly in general. Also consider lighting, things like will the sun glare out AAC device screens? Is there shade? Is there a place for people with high tech devices to plug in or place their devices for typing?

 Teleconferencing And telecommuting and online meetings: all to often there Re events that’s are either far away or multiply in cessions and often both, telecommuting needs to be made standard for events and meeting, I know it can be hard to have a sit down meeting and have one AAC user compute in via video but there are ways to make this work, from having the video up and having a chat screen that people actually pay attention to, or even just having one person reliably read the chat screen, to having a text to speech program read the screen, even basic things like having a loud enough speaker so their AAC voice can be clearly heard over it and giving them space and time to participate even while telecommuting panelists also needs to have the ability to telecommute to events as well.There are a lot of events which should be easy enough to set up with a projector system. This would make many more meetings more accessible to not only non speakers but people with multiple disabilities and in lower income bracket who can not easily travel or attend event or who have a lot of barriers to accessibility and want to attend but don’t have the spoons to manage the crowds, travel, money, overload barriers ect. ( this should used as an option you make available so you don't have to put all the effort into making your event as accessible as you possibly can, it should only be added as an additional option in addition to all the other things you need to do to make your event as accessible as possible, You do not get to offer telecommuting and skimp kn accessibility)

Basic AAC training, all staff working or volunteering at events, seminars ect (also you know teachers, doctors social workers therapist, people in the psychiatric field, emergency responder, specialists ect) should have some basic 101 of AAC training, it doesn't have to be complicated it can be simple like wait for the person to respond, don’t ask a million questions at once, make sure the person is in a state they can answer you before asking things, simple things like that. also some training on the challenges AAC users face would be useful 

Equipment when having an AAC panelist it is really important to consider their needs in planning equipment, for example a mic doesn’t usually work well with a speaker but having a cord or some way to connect to the sound system would make a huge difference, charging stations are also critical to have in plenty of AAC users its a good idea to have several extension cords out and plugged in for AAC users to make use it throughout your events.

Food 

Yes this is actually a communication thing food at events and everywhere needs clear labeling, we need a clear way to communicate about food choices and ask questions, it is also critical that all food at events and otherwise clearly list ingredient and possible allergies , ideally with pictures along side staff in charge of food need to be trained in AAC, asl and also know what is in the food and what allergics are in the food.

Hospitals and medical staff and doctors appointments 

This is another area where communication supports need to be integrated, both in general visits, emergancy rooms, truama wards, maturnity wards, pediatric wards and psychiatric wards all need extensive aac taining and full AAC intergration! we need more than on a scale of 1 to 10 charts. Every doctors office and hospital should have communication boards and letter boards as well as picture cards to aid in communication, another thing doctors and medical staff need to have available is coloring pages for showing where and how pain is for both the whole body and every part of the body. Doctors also need to learn to ask direct questions, provide printed material (or email it) of summaries instructions ect (agin cognitively accessible are we sensing a theme yet?) Doctors need to have a way to communicate with patients outside of appointments like email or text and not phones. Also when scheduling doctors need to schedule twice the time for AAC users, non speakers and people with communication disorders. Clear examples are also important, and to explain what sort of things are important for them to know with examples. Also having non speech based info of these and visuals is also important as options.

Finally You should have staff who are multilingual someone working who is bilingual on each shift (different employees don't over work your interpetert and one or two multilingual employees) and at least one person fluent in ASL and again all materials should be cognitively accessible, multilingual, in braille 

These are the very bare minimum, this is just the start of what we need to do to start building a Non Speak accessible world, there's a lot that needs changing some will be easy and you can do right now! Others will require larger cultural shifts but we need to start changing these thing now! If you want to improve the lives of Autistics and make this world more accessible to us you need to make accessible fi

For non speaker, you need to normalize communication supports and you need to prioritize providing us with those supports and teaching them to us in ways that work for us so we can have out voices heard!

Eye-Gaze AAC for Autistics

This is a topic I have been passionate about for some time now, though I have posted about it elsewhere, it’s time I make an official post here, I maybe be the first to dis

 Ok so aac is kind huge for me, I absolutely love aac and specifically my AAC, recently I was introduced to An aac device that had something called eye gaze which you can use your eyes to select and speak things! I was almost immediately inlove!

This is typically for people with little to no motor control in their hands and fingers but to me it opened up a whole new idea world of overcoming some of the brain body disconnect that comes with being autistic, especially on my especially on days where I'm having a really hard time with coordination, during shutdowns, post meltdowns and post seizures when this tends to be a lot worse, you could also type to speak too or use your eyes that's was the best part! It was either!

I keep thinking about it and wishing proloquo2go offered eyegaze and how much it could really help other autistics who have more of a brain body disconnect than I do also access aac as well or and this could really help out those who use FC and maybe useful for people using FC to try and be able to have access to addition option with FC for those who use it!
*this is not meant to be a replacement for FC and will not work for all FC users but could provide second communication option for some individuals using FC*

We really do need smaller more portable and more accurate eyegaze based aac systems, and or for dynavox to make a eyegaze passed switch/control like the PCEye go. That is comparable with the iPad and ideally bluetooth connected so we can keep our devices safe in waterproof cases but still utilize the eyetracker, additionally smaller tobbi I-12 type series of dedicated speech devices that are more portable for autistics would also be ideal

Unfortunately eyegaze isn’t really even ever considered an option or priority for autistics, I suspect this is largely because the brain body disconnect many of us experience, especially those of us who are intermittently verbal to non speaking /part time to full time aac users) experience is often not well known and not much discussed outside the autiatisticcomminuty. It’s not even something most clinictions are much aware of or really understand in my experience so it comes as little surprise to me that the major manufacturers of eyegaze aac tech would not be marketing to the autistic community, which is a huge loss for us.
Eyegaze isn’t perfect, and it does have its down side of coarse it it is tiring, expensive, hard to get approval for right now and currently most no one knows about its massive benefit and need in the autistic community! The modern AAC tech, while much improved also still needs to be made smaller and more portable S well as more accurate from slightly off angles, but I think it could still believe eyegaze AAC could make a world of difference for many other autistics as well! I think it would be huge if more nonspeaking autistics could have eyegaze as an option!. Eyegaze needs to be made available to the autistic community.

You are failing Autistics when you don’t prioritize AAC

This is going to be short to get me into the swing of blogging again,
lately I have noticed a very upsetting pattern parents of autistic, in many cases non speaking autistic children don’t know what AAC is,
This is not ok!

This concerns me greatly! I suspect more often than not it is because “specialists,” hold off on mentioning it and or introducing it in hopes of pushing for mouth words, all to often we know that specialists will tell families to wait on aac, even though studies have shown aac help build languages and communication skills!

Here is the thing I’m going to lay it out short and sweet,


AAC need to be the first step!

Communication is a basic human right!

Your first step must be Providing Access to communication

 If it's not then you are failing Autistics!


Right after diagnosis a child should immediately start the process of finding communication supports that help them and work for them as well as at least 2back ups! This needs to be the primary goal of any or all autism based services, to provide access to communication, also sensory supports,

 I really can’t stress enough how critical aac services are!

If your goal is to teach the autistic to stop stimming you are failing autistics!

If your goal of to teach them to be indistinguishable from peers your failing autistics!

If your first and primary goal is not providing the autistic client with access to as much communication as possible then you are failing your Autistics! If you are a service provider you are failing your Autistic clients!

these services need to also include teaching presumption of competence to family and all other support staff working with the autistic individual as well, and lessons on the importance of respecting their disabled child’s rights and dignity!

Yes you are failing Autistics when you do not prioritize AAC and access to communication!

AAC needs to come first!

this is going to be short to get me into the swing of blogging again,
lately I have noticed a very upsetting pattern parents of autistic, in many cases non speaking autistic children don’t know what AAC is,

This is not ok!

This concerns me greatly! I suspect more often than not it is because “specialists,” hold off on mentioning it and or introducing it in hopes of pushing for mouth words, all to often we know that specialists will tell families to wait on aac, even though studies have shown aac help build languages and communication skills!


Here is the thing I’m going to lay it out short and sweet, AAC need to be the first step!

Right after diagnosis a child should immediately start the process of finding communication supports that help them and work for them as well as at least 2back ups! This needs to be the primary goal of any or all autism based services, to provide access to communication, also sensory supports, But I really can’t stress enough how critical aac services are!

Part of these services need to include teaching presumption of competence to family and all other support staff working with the autistic individual as well, and lessons on the importance of respecting their disabled child’s rights and dignity!

If your goal is to teach the client to stop stimming you are failing autistic clients

If your goal of to teach them to be indistinguishable from peers your failing autistic client

If your first and primary goal is not providing the autistic client with access to as much communication as possible then you are failing your autistic clients!

You need to stop assuming!

You need to stop assuming i"m independent, well off, mildly affected have the easy form of autism "high functioning " or whatever else you want to call it! Just because I post and advocate on the Internet! And STOP Shaming autistics who do have independence or a milder form of Autism! Stop using it to take away their voices!

I am going to be straight forward here and honest As I don't like posting about my challenges on social media, I like to keep them private this in no way means I don't have them! Yet somehow people assume I dont. Here is the thing I don't fit neatly into your little box and most Autistics don't!

All too often people see I write blogs, they see I use social media, that I'm trying to get a bachelors degree and I am engaged and they use this to make assumptions about me and decide I am to mild to have significant impairments from my autism, they assume I am not severe enough and so my opinions dont matter, what you don't realize is my fiance is also disabled has ADHD and likely Autistic too, I am going to school because that's what my transition plan was and that's what I know how to do, I have been doing it all my life, if I get my degree I have no idea what I will do after that, so let's out this all out on the table then once and for all!

The truth is......I'm actually pretty damn disabled

Driving-NOPE

First off I can't drive a combination of sensory issue, trouble focusing, delayed reflexes make this something I just flat out cannot do!

Face? "Who are you?....oh right your my parent"

I can't recognize faces out of context, not even my own mother! I have to use other ways of identifying people! I use hair, clothing, context and smell. So in class I can recognize my teacher but if she cut her hair I wouldnt know who she was and would panic when she started class because I would see her as someone else and I would walk out and franticly try to figure out what day it was, was i in the right building? Was class canceled? Did we switch class rooms where is my class? When my fiance cuts his hair i often cry and feel uneasy around him for the next week or two, a few times I almost walked off with someone who had a similar hair cut and outfit to my mother!

 ADLs/self care

In my last neuropsych performed last summer or fall on the ABASS ll I scored over all in the "extremely low range" and never received above a "borderline" in any of the categories within!" And we were being generous because the truth is most everything on their we checked off as "yes" needed a side note of "with help, supervision and prompting" there are many things I can do I have learned to do I don't process to do without frequent prompting from eat, brushing my teeth taking, my meds putting on *clean clothes*, to doing homework, cleaning my room and basic chores, if I don't have someone prompting me to do these things on a regular basis they generally don't happen and I will go months without brushing my teeth, weeks wearing the exact same outfit only remembering to change my under bits every few days, Even though I have and thrive and NEED routines to survive I need prompting to start them, I really heavily on a picture schedule app just to get me through my mourning routine, because just getting up and getting ready is often a confusing and overwhelming tasks, but the picture schedule only serves as an aid to help me get started. I without someone prompting me to open my picture schedule I will sit for hours confused and unsure what to do first or how to get started. Before when I had Nim this was only a bit less of an issue since she would always wake me, we had our walk together and then i would come home abd be mostly able to remember to start my picture schedule, but even this wasn't 100% think more like 40 % after Nim died, my world fell apart, and "functioning" became even more overwhelming. Nim was no longer there to signal me and opening my schedules became painful as her care took up a good 50 percent of my daily routine Without Nim I need now more than ever to have someone to prompt me to get started on those basic daily rituals. However the visual schedule isn't enough, as if something interrupts me or there is a suddenly new step or obstacle (like no clean bowls for breakfast) I will become stuck and begin pacing back and forth and unable to move onto the next thing and may become so overwhelmed with confusion i meltdown. having someone there prompting me helps me get back on track and will often help get me through meltdowns so i can rearrange and figure out an alternative, without this help remain stuck for hours, This is all simply trying to get ready for the day, but it is by no means the end of it, these issues and challenges extend throughout the day and a simple break in routine or expected plans can cause me to get stuck and become completely non functional.

   

           Sensory issues also play another role in impairing my basic ADLS , One of the reasons tooth brushing is a major issue for me other then remembering to do it and not knowing how to do it right or how long to do it tooth paste is also an issue. Most toothpastes burn when I use them and so I must have a very specific type of tooth paste or I cannot brush my teeth. While I love showers and bath but the feel of towels on my skin after sends a horrible sensation through my body and if the towel rubs on itself i get horrible sensation in my teeth like i had bit into it that makes my body shake and can cause panic and overload, some days it is enough to cause me to shut down and break into tears until i can get my body to restart and be able to move on, this is another area where "having someone there" can make a difference between out for an hour or two and getting through it in 30 to40 minutes as they will be able to help by stitching the towel for blankets and then be able to provide a deep pressure that can help get me restarted. After showers and baths i have to be completely dry before i can put on clothes, this is less of an issue with shirts and sweat shirts for me as it is pants, putting on pants while my lower half is not yet dry will also send my system into a sensory mess, This will also cause a long lasting sensory irritant throughout most of the day while my pants and skin fully dry. Sensory Irritants are things not bad enough to cause overloads and meltdowns on their own but drastically increasing the risk of something else triggering them and that something else can be something very simple a minor and even something i may not normally be affected by. New freshly washed clothing can also cause issues as it often feels tighter to me which is another sensory irritant and they take several hours to a whole day to feel comfortable in. Sensory issues cause many impairments for me and affect many things like sleeping, eating, dressing and where I can and can't go or do and there are many of them and they are complicated. In fact sensory issues can make up their own pos entirely t so I will only use these few examples

Eating

If I have someone helping making and cooking meals for me i can mostly be okish with this but in general I am not, this is another area where I need a lot of prompting as I often do recognize when I am hungry until i'm having headaches and feeling shaky and emotional, even then if there isn't something easy to heat or just eat to I often won't eat because I can't figure out what to cook or where to start so I become over loaded and wander off and meltdown until I am exhausted and pass out or find a way to forget my hunger until the option of easy food becomes available Another common issue I have is when i am hungry but there is nothing my mouth will accept or will want to eat so i gain will wander off and not eat anything. There are a few things I can cook on my own but all to often I get overwhelmed by all the steps involved just like ith my moning routine and without someone there to prompt me i will not make more then one meal a day, though even this can be risky as i tend to forget im cooking and have left things on the burner, I find if i have premade meals or things easy to make like chicken nuggets I am a bit more likely to eat. However getting food is often so overwhelming I generally dont Eat

Other issues I face arround food is texture ,taste and swallowing. As is to be expected there are certain textures and seasonings i can't eat, my body has strong reactions to them where my throat will refuse to swallow them and no matter how hard i try i just flat out cannot eat them some examples are, many nuts, mashed potatoes, tofu and anything spicy Even when I can eat foods I like they I always need a drink as food gets stuck in my throat really easily and some foods that I like and can eat just fine may be more likely to be regurgitated (not something I can control) 

Other areas I have impairments

· Brain body disconnect (this means my body doesn't fully obey my brain and causes impairments in communication, writing, ADLs and more (this will likely be its own post some day)

· Sleep

· sensory issues

· sensory processing

· understandingbody language

· Socializing

· Meltdowns and shutdowns

· Communicating

· Wandering

· processing danger in real time

· highly fixated interst

· finances and understanding money and bills

· I can't drive period

· body awareness

· facial recognition

· Executive functioning

· cooking/ cooking safely

· staying organized

· managing female issues

· and more!

        the truth is I have many many challenges and impairments, many of them are things you don't see or couldn't really know about with out spending real time with me. with out spending a day ot two with me or without taking on a job as an aid or caregiver for me most, of these impairments you would remain unaware of and would not know about from talking to me online or maybe not even spending a few hours with me a week. (well depends really, more you wont see ALL of them, but like spending time with me in person where you will see me stim and talk to you through and AAC device and i stuggle with eye contact and tend to hyper-focus, but wether I was verbal or nonverbal wouldn't matter since either way you could only really see a few of my issues and could not possibly make a proper judgement on the level of my impairments and disability just by interacting with me. This holds just as true if not more so online and when reading my writings, where i have many errors in grammar and spelling you are only seeing a fraction of what i am struggling with and far far far from all of my challenges. The truth is I have come so very far in my challenges and abilities since I was little and I hard to work hard to get to where I am today years worth of OT , play and speech therapies, of doctors and specialists. thing like doing buttons on my own unless they were snap buttons didn't happen until i was 10, tying my shoes i was 14 riding a 2 wheeled bike? 14 (and that i can't do safely and end up cut up from it so i need an adaptive trike do to issues with body awareness) holding pencils and basic writing took years and years, I never did learn cursive and computers made a HUGE difference in my ability to write to express myself! Yet all to often because I speak of a need for acceptance or i speak out against autism speaks and can write online and express myself on the internet I am told i am to high functioning to know what real autism is like and people assume I have no real challenges or significant disability,What they don't realize when they assume this is I do have many very real challenges and I have worked very hard to achieve the things and accomplishments I have

        I am not alone in this, this has happened to all of my fellow Autistics, This is a practice a few Autistic friends and parent Advocates and I coined the phrase for called functioning shaming definition below. This is something that is very harmful and damaging, it takes away voices from Autistics who had to fight to get their voices, Please keep in mind when someone id advocating for acceptance or boycotting against an organization you are only seeing a small fraction if their abilities and their challenges you don't know how hard they had to work to get there you don't know what challenges they have on a daily basis and by telling them they aren't impaired or disabled enough you are not only making assumptions based off of what little you see but you are also PUNISHING them for making progress (something you insist you want for your child or loved one) but taking away voices many of us spent years fighting and struggling to get, Voices that could give you insight and help you be able to help your Autistic loved on. so Please stop assuming and listen you then maybe we might both learn something and be able to help each other! 

 please stop making snap jugments about somones abilitiies or lack of ablities off what the post about, stand for or from brief interactions

please stop using accomplishments to take voices away fro Autistics

please stop assuming someone cant have severe disability and impairments and still want acceptance and to be treated like a human

please stop using functioning shaming!

 

                   thank you!

Functioning shaming (1) the act of taking a person's accomplishments and your perceived functioning abilities based of the fact they have strengths or abilities in one area and or choose speak out an organization that that talks about them yet shuts them out and is harmful or they choose to advocate for acceptance and understanding, to dismiss and belittle their challenges and efforts to get to where they are today and silence their voice from the discussion of their disability(2) The act of saying someone is to impaired and disable to have an opinion and assuming they want a cure or hate their disability because they have many challenges and may not be able to fully self advocate yet / using their impairments to deciding they have your opinions and thus you speak for them and know what they want and need. (also using their impairments to overlook what they can do and their abilities. (3) the act of punishing autistics and others with disabilities for developing or not developing skills) (4 The act of using ones abilities in one area or lack of abilities in an area you to silence them or speak over them

image description: purpl backgroound with the text of the definition of functioning shaming

The Real Autism Crisis

TW all the trigger warnings an.iesm, death abuse, and pretty much everything 

           There is a very real and serious Autism crisis

Yes we do have and Autism crisis and it seems t be an invasive epidemic world wide! But it's not what you think! 

The crisis isn't about "the rise in autism rates," something that is largely do to more awareness and understanding about Autism 

No the crisis is invasive, frightening and dangerous 

The Autism crisis is....

Am invasive lack of presumption of competence especially when we do not have or use verbal communication or when our verbal communication is deemed poor

It's the assumption that those who do use verbal speech need few or even no supports at all, and the reality their needs are often over looked, ignored and rarely accommodated

autistic communication rights are ignored, before we can have access to a full comprehensive AAC system we are often told to "prove it low tech first," when we don't use AAC 100 percent perfect right off that bay we are said to be in interested, many alternative communication methods are viewed as "con traversal and even when we are clearly typing on our own either the authenticity of out words or that of our diagnosis are called into question

The communication support needs of autistics with decent to excellent verbal skills is overlooked and ignored entirely

The fact that communication and verbal skills are seen as binary concepts

The fact that access to communication AIDS and a variety of methods of non speech based communication methods isn't seen as a basic human right for us,

The fact that people assume we don't communicate if we can't use or don't use verbal speech or an AAC 

The fact we have to remind people behavior is communication 

That children are expected to spend 40 plus hours a week in therapies designed to try to make us indistinguishable from our peers or as normal as possible while also getting other therapies and being expected to also go to school, childhoods stolen in hopes of making us seem normal 

A growing number of dangerous and experimental treatments and abusiveAnd therapies in hopes of curing us, many of which would be considered child abuse with a non autistic child, prominent example is mms (mini ale mineral solution aka bleach fed to children and administered though enimmas  

The fact that autistic friendly therapies are not seen as a priority and learning to pass as normal is even at the detriment of the autistic individual

The fact RPM isn't more widely available and I'm not sure if insurance will even cover it

The fact that stim suppression is considered a training goal even though stimming is critical for many of us

The fact that essentially dog training techniques are used as therapies on us to train us to act normal.

The fact there are therapy goals at teaching us to play "the right way" (aka the non Autstic way)

The fact it's seen as acceptable to talk about us like we aren't Ben there when we are next to you!

The. Fact that proper clump comorbidy in with being part of autism and don't look at them separately as additional things we have to deal with,

The fact that organizations that claim to represent while ignoring us when we say something is harmful and they will try to silence us and claim to speak for us while shutting us out, spreading fear and stigma. 

It's the attitudes that murdering us is some how mercy, while our killers often parents and care givers are painted as victims and us the undo burden who they had to endure, our support needs and challenges are used to justify our murders, that when we are murdered the reports aren't about how it is an unspeakable act of cold blooded murder but rather about the struggles of our killers, 

The fact society seems to send them message we and our loved ones are better off if we were never born or if we are dead

The fact that we have to fight for our basic human rights and those are often ignored.

The fact that parents showing videos of us at our worst to "educate" by posting about how hard and horrible autism makes their lives is seen as acceptable and our dignity and privacy not being valued especially in the face of parents talking about their suffering

The fact parents suffering matters more then the Barrie's that we face due to ableism and a societies attitudes about us

The pervasive use of functioning labels that paint an inaccurate picture about an autistic individual and our needs, capabilities and assets, 

The using of functioning labels to silence and function shame autistics 

The fact that being able to type is used against us to invalidate out voices especially if we type well (spoiler how well we type tells you nothing about what challenges, daily struggle S or impairments we have)

The fact that any small success or having certain life skills even if they are not as important as ones we struggle with is s used against us to silence us 

The fact that functioning shaming is a thing 

The voices of Parents " professionals and organizations being valued over those of actually Autistic people 

The mere fact an autistic person can disagree with something or say "wow that's harmful," or "how would you feel if that was up you," to things like meltdowns p or personal care things being put out on the Internet for the world to see and 100 parents will jump in and attack or harass the autistic person, really all an autistic person needs do is disagree with the something posted by a parent, org or a non autistic and they get attacked.

The fact that there are amazing parents and family members out there who work to lift up Autistic voice, support neurodiversity fight for presumtion of comptenence fight agaisnst all the issues on this list to better the lives of their children and loved ones only to also be dismissed and told they have it easy and clearly don't know what "real autism is,'

this whole "this is real autism," thing often used by people who feel autism isn't being portrayed right often used as an attack on what they see as ?to happy a depiction" and ignoring the fact that autism is complex.

Autstic adults and children are constantly exposed to hearing terms like "burden," "crisis" "Broken," "lost," damaged and "trapped" in reference to us and being autistic and this is seen as ok while "valued," "competent," "life worth living," "being seen as a whole person," and any discussion of acceptance and understanding is seen as"glorifying autism," controversial and radical 

The fact that people take offense to the Neurodiversity movement that basically say different neurology and disability is part of human experience, disabled people and people with different neurologist have a right to our basic rights, understanding supports we need and acceptance for who we are and it's ok to have different neurological make up and to have disabilities what ever they may be it doesn't take away from our value as a person

The insistence one use of mental age

The idea IQ test accurately determine anything really.

The fact that most of the funding for autism goes into studies about causes, prevention and prenatal testing instead of into studies on what services and community supports are most beneficial to autistics, to adult services and community support or to services for adults

The fact that April is often a traumatic time for Autistics as we are looded with harmful awareness adds that stigmatize us, stories of our peers treating us as humans and being praised for it and inspiration porn, and of coarse lets not forget the light it up blue which is a giant add for autism speaks that the autistic community has addressed as harmful and is the center of a massive boycott,

The fact that the autistic run and founded events in April for acceptance and understanding such red instead, the blog challenge, and a variety of alternatives to light it up blue are generally ignored drowned out by the things lifted above

The fact that services and supports for autistic adults especially in community supports are rare and hard to find 

The fact most services cut off at 22

The fact most organizations providing service dogs for Autistics will not train them for adults and many are either scam or well intentioned but promoting and using practices/tasks such as tethering that are highly dangerous to both dog and he autistic individual. Even though there are a variety of tasks that guide and hearing dogs perform that can really help mitigate and manage sensory processing issues.

The fact that poor families, families of color and minorities and females are less likely to receive an autism diagnosis and the gender and cultural biases in the diagnostics and the autism field

The fact most people think of autism they depict a white male child often sad looking

The fact that even though every other disability community has pretty much realized negative awareness techniques and using pitty to get funds was wrong and damaging so they did away with it like in the 60s or 70s (it's 2 am I don't have the exact date more the spoons to look it up) up yet this is the main way fundraising is done in the autism community 

The fact that electro shock is seen as a reasonable way to treat autism and is just reaching the fear in hopes of having it banned as I humane in the year 2016! Please FDA ban aversive shock therapy!

The fact sensory issues are rarely taken seriously 

The fact that non autistics are praised for treating us like people

The fact we have to fight to be seen as humans 

The fact that passing means our diagnosis is devalued and not means we are denied out autonomy 

The fact that our sexuality is ignored

the fact that we spend hours in compliance training

the fact that having emotions such as anger, frustration and being upset while normal for everyone else is seen as being defiant and uncooperative,

The fact that autistic is used as an insult now by some

The fact that use of autistic is ignored and even painted are therapy 

The fact that when autistic choose to use identity first non autistic people correct us and tell us how to talk about ourselves and insist we use person first.

The fact we are often given little to no autonomy 

The rampant infantalization of autistics

The fact doctors still tell parents if we don't do X by age 5 we never will 

The fact that the entire focus is to make us normal and not to accommodate us and help us grow with our strengths

The fact you can be denied an organ transplant because you are Autistic

the practice of forcing eye contact

The fact that the world tells us it's better we pass and burn ourselves out completely then we seem even a bit Autistic

The fact that our accommodations and needs aren't taken seriously and are often treated as not real or a burden

The fact that we are seen as tragedies not people 

The fact it's 2-3:30 am and I can rattle these off the top of my head despite being half awake!

I know I am missing so many more!

This is the real Autism crisis

 The real Autism crisis is how society treats us the Autism crisis is Ableism!

this is a crisis we must address and needs to be dealt with!

this is the Autism crisis Autistics face everydaay!

Lighting it up blue hurts Autistics! Wear Red instead and hangmulticolored light too!

Hello,

        This year I will not light it up blue, I will not wear blue
Please join me don't wear blue don't light it up blue wear red and hand multicolored lights instead!!!
What's wrong with blue?

          To starts off Autism is a vast spectrum, no to individuals are the same, symptoms And the severity of the symptoms are different for everyone on the spectrum and even this is a bit fluid for autistics. A single blue light is very one sided one view,
Light it up blue and wearing blue was started by autism speaks. autism speaks is at the center of a major boycott and is the only charity continually challenged by the people they claim to represent and there is a very good reason for it!

         Autism speaks has several MAJOR issues that can not be ignored! From irresponsible spendings where only 8 percent goes back into the community in the form of services and 43 percent going into research that does NOTHING to help autistics and is generally geared towards things such as prevention and prenatal testing which would enable parents to choose if they want to abort the child based off of a prenatal test, (this is based off of their 2011 tax form because in their 2013 tax form they merged "awareness, such as adds and self advertisement with "family services making calculations very difficult)

        This means Autism Speaks is actually TAKING money out of the community that could be going towards providing much needed supports and service

        What maybe even worse then taking much needed funding for resources out of the community
Autism speaks uses fear and demonizes autism to get donations, Awareness is important but it is no good when it is done through creating fear, pity and stigma and light it up blue is their national awareness campaign and is nothing more then a thinly veiled self advertisement and I simply can't support autism speaks!
I refuse to support an organization that tells the world that I and others with my disability are

Lost
Broken
Missing
 A Crisis
Tragedies and
Ruining our families lives

            If any other charity said this about any other minority there would be national outrage! What if this was how national female, Hispanic, black, pagan, Muslim or christian groups spoke of the people in their ranks? What if they went even further and had none of those individuals in their actual organization and refused them a voice? What if they garnered pity for family members who killed these individuals sighting that person's gender, orientation or religion as being so hard and burdensome their deaths were understandable and even acceptable? That what Autism speaks does, when you support Autism speaks this is what you are supporting!

            So I will not light it up blue, I will not support autism speaks and I will not help spread an awareness that at its core harms Autistics!

            Instead I am going to promote Acceptance and understanding by wearing instead and hanging multicolored lights for Autism Acceptance and by participating in events created by Autistics!

            That's what we really need acceptance, supports and understanding so please join me in raising the voices of my fellow Autistics, promote acceptance wear red instead and hang up some multicolored lights and shine a light for acceptance of the entire spectrum!
                                 
                                             Thank you!!!
                                                 


For more Autism Acceptance month activities Check out

Not just blue- multicolored lights for Autism Acceptance https://www.facebook.com/events/1418248198477746/

Walk in red https://www.facebook.com/events/441004906049419/

Autism Acceptance Month https://www.facebook.com/events/640472342746324/

"I am Autism Speaks" An Adaptation of "I am Autism""

Hello,
                A few Years ago Autism Speaks made a video that outraged the Autistic community called "am Autism" they got such a strong backlash they had to take it down, However the memory of it is still discussed in toe community today and you can still find videos of it on social media. a while ago I got to thinking about it before I realized this video was spt on with just about everything they were saying, However it did require a few Edits and they forgot to add "speaks" after they said Autism, So Today to distract myself from Nim's loss I made those Edits for you please Enjoy. My hope Is maybe Autism Speaks if you read this you will understand this is not meant to be mean spirited but to get you to do some real inwards thinking and consider the messages about Autism you are giving to the public Even though many of you have good intentions the way you speak about Autism is harmful, Please do some inward reflection and consider the messages you are sending out, ask yourself "how would I feel if a large organization said these things about me?" and consider just WHO you are choosing to ignore and shut out The Autistic Self advocates, and our family and friends who do not see us as tragedies or burdens but as people who need to do things differently but are still valuable and who still have voices weather we speak, sign, type to communicate or don't yet have the ability to use AAC so we communicate through our behavior. We live with Autism everyday, all we want is for you to hear us and to listen


"I Am Autism Speaks"

I am Autism Speaks

My hatred is visible to your children, but if I can help it, It is invisible to you until it’s too late.
I know where you live.

And guess what? I live there too.
I hover around all of you.

I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.

And with every voice I take away, I acquire yet another language.
I work very quickly.

I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.

I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.

Your Advocates don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that my propaganda isn't harmful--of course, until it’s their child.

I am Autism Speaks, I have no interest in right or wrong. I derive great pleasure out of your loneliness.

I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?

And the truth is, I am still winning, and you are scared. And you should be.
I am Autism Speaks. You ignored me. That was a mistake.

And to Autism Speaks I say:

I am an Autistic self advocate, a father, a mother, a grandparent, a brother, a sister, a friend.
We will spend every waking hour trying to weaken you.

We don’t need sleep because we will not rest until you do.

Autistics and Family can be much stronger than Autism Speaks ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.

I am an Autistic Advocate riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.

Autism Speaks, you forget who we are. You forget who you are dealing with. You forget the spirit of Autistics, and mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are Ireland, We are the European Union. We are the United Nations.
We are coming together in all climates. We call on all faiths.

 We use picture Schedules, AAC technology, blogs, facebook, social media and Twitter, and a growing understanding to spread Acceptance you never anticipated.

We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love and neurodergance and disability acceptance

Our capacity to love is greater than your capacity to overwhelm.
Autism Speaks is naive. You are alone. We are a community of warriors.

We have a voice.
You think because some of us cannot speak, we cannot be heard?

That is autism Speaks weakness.
You think that because you build a wall of fear and stigma, I am afraid to knock it down with my bare hands?

You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and autistic self Advocate.
Autism Speaks, if you are not scared, you should be.

When you came for Autistics, you forgot: you came for me.
Autism Speaks, are you listening?



     

I am Autistic, yes I am Nonspeaking verbal and Yes I use AAC apps to communicate!

I amAutistic, yes I am am a nonspeaking verbal and Yes I use AAC apps to communicate!

Hello, 

            So I wanted to share something will all of you a deep secret that I have only told a few people until now. One that will likely upset a few people and be highly co traversal but it needs to be said What is it?

             I wish I had never learned to speak

            I am an adult with Autism and I wish that I had never learned to speak. I know this sounds crazy, I'm sorry. I am not trying to offend anyone I Just want to share this, and maybe I am also hoping I am not alone in this. For me becoming verbal has caused me so much pain and to be honest it has come at a great cost. Yes, I know some good things did come with it, but so too did a lot of bad. I just wish that I could give this ability to someone else who would love and appreciate it so much more and who actually wants it despite the costs.

A brief history

            When I was a little girl I was delayed in many areas of functioning including speech and language. I was delayed in almost all areas of speech and communication. This was all in spite of early and intensive intervention since the age of 8 months. However, though you would not know it today, the truth is it took a lot of work to give me the verbal skills I have now.

Looking back on my memories I can remember not being able to find the words for what I wanted. I remember the frustration; I remember the therapies, and trying as hard as I could to communicate. I remember the anger when they didn't understand me. With a lot of speech and occupational therapy I began to speak and to use words for communication. Then eventually over time the more I spoke the better I got at it. I know that I have come such a long way since then. This is something people who know me, who watched me grow up can see. What they don't know and what they don't realize is that exact same progress that I have made over the years has affected me in other ways as well and came at great cost to me.

         

 Thinking as a child

         For me verbal communicating is not my first language, it is actually a second language. My first language was my senses, there has always been so much information coming into them, so much communication smells, tastes, sounds, sights, and textures all had information and meaning for me and they all shaped the way i understood and saw the world. This was also the major source of my memories. I used to use people's scent, sound of voice and hair to recognize them as I couldn't recognize faces. The truth is I still use these features to identify people. how ever all my thoughts as a child were based in sense and experiences I Knew, saw, experienced and understood the world through my senses. Many of the sights, sounds, textures and smells had certain feelings in my body or they had a taste. the feelings they gave me enabled me to understand my environment and i used them to understand the world around me.

            One memory in particular comes to mind as an example. That was the first time I saw those huge round light bulbs they used to put around mirrors in salons as well as some stores. It fascinated me! It was very large and quite bright I was drawn to it, so I got closer I could feel the heat coming off of it, the heat seemed to lightly vibrate and pulsate on my palm and fingers, the feeling was just on the edge of what I could physically feel, as I reached my hand out. Fascinated with the heat and faint pulsations. This ligh bulb also smelt different then the lights we had at home. Curious I touched it with with the tips my fingers. Suddenly I was hit with a sudden sharp feeling in my finger tips it was the feel of the burn on my fingers and with it came a sensation that went from the tip of my fingers up my arm and to my tongue. (I know it sounds strange but it kind of had a taste or feeling in my tongue. in fact many types of injuries have feelings or tastes in my tongue or a smell like feeling in my nose. it isn't exactly a literal smell but a sensation that is smell like? I'm not really sure how to explain it. It was something I never forgot and would still do a few more times again. Sometimes I did it just because I wanted to feel that sensation again or make sure it was still there. Maybe the light bulbs had some how changed and something else might happen? To be honest I would still very likely do it again today. I used my senses to understand and navigate the world. I used them to have an idea on the time of day and where I was. I know it sounds crazy but i remember being able to pause what I was doing and focus on the smell of the room, the position of the sunlight and feel of it on my skin and despite the fact that I didn't have a concept of time in the sense of numbers I would know when in the day it was.

      

            Being such a visual and sensory based thinker was part of what caused me so much trouble in communicating, there just were no words to describe what I was experiencing or what I was thinking. I used to long for something that would allow me to communicate my way and a way that was natural for me. I can remember being a little girl, sitting on the exam table in the doctors office, The doctor came in and asked me how I was feeling and what was wrong after mom told him I wasn't feeling well, at this time I had some speech, I said my throat and belly hurt. He asked me what it felt like and "how," they were hurting. I became confused I didn't know how to explain it so I repeated "they hurt," I said. he proceeded with questions and verbal examples, well is it a deep pain? A stabbing pain? A cutting pain? I didn't understand and couldn't match those ideas to what I was feeling. I wising, and imagining, I could place my head on his forehead close my eyes and focus and he would some how be able to see feel and hear everything I odd and then he could know my pain and have the answers to his question. 

     As a child I was both a seeker and an avoider, I was both hyper and hypo sensitive to sensory I put, Often I would become over loaded when sounds where too loud, smells were too strong textures too rough and I would meltdown unable to communicate the pain, often I would panic and meltdown. Focusing on an interest, rocking, spinning objects and covering my ears were all things I did, and still to help me manage my sense and process my environment. I would also meltdown when people didn't understand me or would misinterpret my actions. One example I can think of was during my various occupational therapies. We would be doing an exercise like walking the balance beam or something and after a bit I would begin to feel odd sensations in my muscles, I began to laugh and to hesitate or try and stop but they would push me on and I kept laughing until I couldn't take it anymore and broke into tears, fell off the beam, or stopped what I was doing. Sometimes this laughter came with tears even before the meltdown hit. I didn't understand why they kept pushing me. This was a laugh of confusion, frustration, distress and of suffering but they seemed so oblivious to it. 

How things have changed 

      The more I used speech and went to speech therapy the more verbal I became. As i became more and more verbal i became more and more detached from my environment and the world around me and from my sensory thinking. As i started to lose my sensory thinking some of my senses in fact began to feel a bit duller. however this did not stopped me from having sensory issues or becoming sensorially overloaded. i still have many sensory issues. they are just different now. i have the issues without the sensory connections I used to have. in losing the sensory thinking i lost a vital part of myself. The world has become even more frustrating, more confusing. I am also losing my ability to think visually the way I used to. The more I use words for communication the more I use them to think and the more the visuals fade away. I have become less able to navigate my environment. Some days verbal thinking is like a plague of a thousand voices screaming inside my head that I can't shut off. A jumbled mess of verbal thoughts with no clear point. As though my brain is spasming from the strain of thinking verbally and nothing I do will make them stop.

       Most of my ability to think, process and understand the world around me through my scenes is gone. It has been taken away from me replaced with words. I can understand and formulate complex thoughts and ideas and even verbally explain many of them. Yet in-spite of this I can't give directions, I can't tell you where something is in the house. I truggle to tell a doctor what's wrong, how something hurts. And I struggle to communicate how I feel or to be able to explain what emotions i am having, when I'm upset, stressed, anxious or frustrated I can't speak as though something has cut the connection between my brain and my mouth and all that can come out are incoherent sometime repetitive sounds that only I can understand. When this happens people think I'm being stubborn or keeping secrets or being spiteful. Some days it takes a lot of effort to speak so I give short answers and people assume I am being rude. 

        My brain can't seem to juggle understanding the world for what it is and using verbal communication at the same time. Temple once explained that with autism we don't have enough wiring to support all the parts of our brain and I do feel this is very true. When I had little to no speech all of the wires in my brain were linked to my sensory thinking. With therapy more and more wires were moved to verbal thinking and processing slowly overtime I began to loose a lot of my sensory thinking and it was being replaced with verbal thinking. However unlike sensory thinking it does not feel natural and I think for me it manifest differently than for those who are natural verbal thinkers . My process seems a lot more jumbled

This is the best way I can demonstrate it below 

            *Sensory sensation -> sensory sorting *processing* -> understanding (now more it is more like partial understanding) *this is we're it would end as a child before much of the speech therapy*- > search for and match with previously spoken sentences/scripts -> dissection and mixing of scripts to match thought or experience -> raw mental verbal translation -> apply scripted additives for sentence structure(-> Adding pre translated phrases and scripts from past experiences-> Transition of verbalized translation of thought/experience from brain to body (this step might best be understood by imagining the verbalized translation sliding from the brain Dow a nerves or something to the back of the mouth) -> coordinating verbalized thought into physical movement of tongue and mouth -> Physical verbal communication* 

       This is kind of a raw idea of how communicating works in my brain but there are more complicated aspects I can't word. This very draining process can take anywhere from a minute or two to days weeks or years depending on what I'm communicating. It is almost as though my original sensory thinking had many extra tedious and draining steps added to it. This processes is kind of like a big puzzle in my brain. in a general back and forth conversation this takes a few minutes as I am often sifting and rearranging ore scripted translation. However this takes a lot from me to do and I will often become. Nearly completely unaware of my environment as my body focuses all its mental processes to this one task. This also makes conversation very difficult for me as I'm having to constantly do this. Often I don't know what to say to keep a conversation going and after we have run out of things I can quickly script or run into something I have not yet scripted or need to process the conversation falls short. Keeping the topic on my interest makes it much easier to communicate and to keep my attention. In conversations. After all I have plenty of pre scripted information to exchange in conversation.

      It used to be I would only have to go through this processing while having a conversation or when in class if I wanted to participate, however slowly over time and the more i was expected to communicate verbally the more this process began to take over. As though my brain is constantly in this exhausting process to prepare itself for surprise conversations.   

     As I said this is a very stressful and tiring process for me and can even be painful. Constantly having to do this makes the world feel dead to me. And in-spite of the fact that my brain is almost always stuck in this loop there is still so much I will never be able to communicate so much that remains trapped inside of me. Even if it has been translated I can't seem to get the translated signal to travel to the next step.

    While a large amount of my sensory processing has been taken from me I still need a lot of sensory input when thinking and translating. Especially if my brain is trying to formulate complex concepts or process big events. Sometimes my brain will start this translating process while I'm walking. This has lead to me loosing track of where I am and finding myself in a sort of wandering state. 

         

      Even though I have lost much of my sensory understanding my sense are still heightened and I can easily become overwhelmed and overloaded. I think for me this process is almost like a sense in that I become over whelmed and overloaded a lot easier during it. Someday I would do anything to make it stop because of how tiring, draining and stressful it can be. 

More on the cost and the price I paid 

       Learning to speak has come at a great cost to me, both emotionally, in regards to services but also physically. Being verbal, people seem to assume I am capable of more than I actually am and they tend to dismiss or down play my other challenges. Many times when I have expressed something that is a challenge for me they dismiss it and tell me that everyone has that issue. They don't get that I have it to a greater degree. Everyone has trouble recognizing people. I often can't pick my mother out when we get separated in a store and I need to remember what she wore to find her, if I saw someone with a similar haircut and jacket I would go with them until they asked why I was walking with them and putting stuff in their basket. Everyone has sights sounds or smells that bother them. However certain perfumes cause an instant migraine and feels like someone of stabbing me in the eye. This is just one example. I also have trouble remembering self care, homework, chores ect but I'm told that I'm not trying hard enough. I have even been even told I am to high functioning for some services that I desperately need. a few times i have tried to explain some of my challenges to people i have been told they can’t be that big a deal if i know what they are and now i just need to be more mindful and that will fix them. I also can't seem to get the tone in my voice right, I'm either to loud or quiet and for some reason some people almost always think I am being rude, "lecturing them," or being "nasty," when I am not trying to be those things. Most people see me as high functioning for being verbal they tend to get more upset when I stim or do anything that makes it clear i am autistic. People are also a LOT less understanding when I have meltdowns or become overwhelmed.  

          Communicating verbally takes a physical toll on me as well whenever I am thinking verbally or communicating verbally I process A lot less visual information. My eyes see but my brain will not process what my eyes are seeing, It is like I am hardly seeing or not seeing at all! My eyes in fact do see less at these times as well. Because of this I can't have or sustain a conversation while I do things like climb rocks, navigate, go up or down stares or other activities that require me to really be able to see and process what I am seeing. Even things as simple as stairs become more of a hazard for me. I have even gotten physically lost with a friend because we're talking. Something (I don't remember what) cause us to stop our conversation for a moment and then we realized we were completely lost! We eventually found our way back to a place we knew after 20 minutes or so. I have many more stories like this.

        Because being verbal has caused a loss in visual thinking I have also lost a lot of my visual memory. This is a huge issue for me. Not only does it make it significantly more likely I will become lost, but it also causes me to suffer more severe impairments from another condition I have. In addition to my autism I have face blindness, this means I can't recognize people’s faces, even the faces of people I know like my own mother. To get around this I need to rely on hair, clothing, sound of voice and scent to help me recognize people I know. However since I have lost much of my visual memory it has taken away much of my adaptation to living with face blindness. This is extremely stressful. Imagine someone comes up and talks to you. From the context of the conversation they clearly know your name and who you are and parts about your life but you’re standing there puzzled desperately trying to figure out who they are because to you they look like a complete stranger. A complete stranger, who seem to know things about you that only those close to you might know.

         The world has become even more frustrating, more confusing for me. I am also losing my ability to think visually the way I used to. The more I use words for communication the more I use them to think and the more the visuals fade away. I have become less able to navigate my environment. I feel so trapped because of this, in many ways without my sensory thought or thinking this world feels duller to me, I feel so very detached and the more verbal I become the more dead this world feels to me.

         When I am in a verbal state I process my senses much slower and thus might not immediately process that I am walking into a street or that I am about to walk into a person, a phone pole or a fire box. As I said before in a verbal state my eyes see but my brain barely process what I am seeing at all! When my brain is in a verbal state I often feel extremely detached from the world like I am lost is some dizzying haze or a mental fog and I become over stimulated and exhausted much faster 

         I don't feel right being verbal but I have been verbal for so long and I know I can communicate verbally so I can't just be non verbal, but I hate feeling so disconnected from the world around me. I hate not being able to understand the world the way I used too. I hate that the more I rely on words the more I seem to lose my ability to understand and navigate the world around me.

         I have been trying to find a way to explain this to my therapists and one or two close loved ones, so I tried to come up with examples to help understand if only a little what it is like. I have only managed to come up with 2 examples. The first I will call the prosthetic leg example

       

            Imagine you were born without one or both your legs. You live your first 6 years or so like that getting along with what you can. You learn to do things without those legs and your arms become strong. Then one day your parents give your prosthetic legs. Over time and lots of therapies as well as the therapies before you got them help you learn how to use them. Within a few years you are able to use them even better then people ever thoughts you would. Still the leg isn't part of you. You can't feel through it like you can where your legs would have been. Sometimes using the prosthetics makes your body sore and tired someday it might hurt or be a big hassle to use them. However everyone will expect you to use them because you can no matter how much It might hurt. 

        The other example I can think of is in the first language second language sense. Imagine you learn a second language, you start using it more and more and as you do you grow rapidly in your fluency. You may not be as fluent as a natural born speaker of this language but you can come off as though you are. Many people may even think you are a native speaker. Slowly you use your first language less and less and slowly you start to lose your original language until one day you realize it is gone! You may know a few words in it but for all instances and purposes it is gone. You realize you can't read old notes, old letters or any of your favorite childhood stories. Nor can you understand your old favorite movies anymore. You are no longer part of your original culture and you can’t understand things from your culture. Where you live no one really speaks that language and they consider unimportant anyways. They feel that you have made huge amazing progress and maybe even better off for losing your original language. They don't understand how much it hurts you because you have lost you original language, your culture and worse you lost a huge part of who you are.

      These examples on really explain a bit of the emotional side effects and issues but don't really demonstrate the physical affect accurately I know. Being verbal has come at a great cost, I hate myself for ever learning to speak, some days it hurts so much knowing I can speak, knowing it is expected of me, because people know I can and because I don't have the right to stop using a skill I have no matter what it costs me. Often I cry myself to sleep as I realize how much of the skills and understanding I once had is fading away and knowing the more I speak, the more I lose my first language, the more I become detached, and the more I lose a major part of who I am. Only to become lost locked up away in a world I can't understand, forced to communicate in a way that pleases everyone else while it continues to make everything else in my life some much harder. I cry knowing no one else could understand why I hate being verbal, why I wish I had never learned to speak or to really understand that being able to speak doesn't mean it is easy for me, or how much this skill has truly cost me. 

AAC apps /devices and finding a balance 

            Sometimes the verbal communication portion of my brain will shut itself off. Often this will happen during overload or when stressed, however occasionally when I am calm and relaxed or happy it will also shut off and when this happened and the shut off is not caused by overload or distress, for a short while I will feel like myself again! I will see more details on the things I look at processing more visually. I'm more aware of my senses and a bit of my old understanding turns back on just a bit and I feel connected again. During these times I feel much happier and For a while things feel right again and I feel a bit more like myself. Though it seems it can never stay like that I always have to return my verbal communication and thinking. I have been communicating verbally for so long it is expected of me. Being verbal is both a part and not a part of me like a prosthetic leg. 

         This last year I have undergone two surgeries, one to remove my thyroid the other was a lymph node removal, both times left me nonverbal for about a week or so. During that time I discovered a few things. One I was a lot happier during the time I couldn't speak as I didn't have to start that cycle up as I used AAC apps to communicate. Two I communicate a lot better typing and using these apps then I can talking. Three I am higher functioning and can manage conversations and social interactions better with my apps. 

    

                 For me becoming verbal took a lot of hard work but has also become something of a burden. It is something that came with new and unexpected challenges. There is a part of me that wishes to give up speaking and just use my apps but this is something I know may would never 

support and would think poorly of me for it. I I know there are many who are non verbal that would love to have my ability to speak, I know many parents who would give anything to have their kids be able to speak. However I honestly wish I could give this to someone else who could appreciate it more. But I can't.

    In learning to speak I traded the frustration of being non verbal, not being able to find the words and not really being able to communicate for a very stressful and draining and frustrating process, depression And still struggling to communicate but having the demands and expectations that I communicate verbally in-spite of how stressful, tiring and frustrating it tends to be.

           Over the last few months we have been trying to do a thing where I am only verbal at home and use AAC apps out in public, This enables to to better manage my environment, navigate social situations and be helps reduce the amount of over load I experience. This has also had many other surprising benefits. when I use my apps I to communicate I can and actually do communicate better. When I am verbal there is so much that remains trapped and stuck inside. Sometimes I really want or need to say or tell someone something but the words just won't come out! This has been something I have struggled with my whole life! While using these apps I am able to communicate far more than I have ever been able to while verbal. After using these apps to communicate for a day or two my reading speed and comprehension begins to increase. When I did the app testing and remained nonverbal for 2 weeks straight my reading speed increased nearly 5-10%. Additionally I am able to draw better and bring far more detail into my drawings. I become more aware of my environment and I am able to process visual information faster, thus I walk into things less and am more apt to notice if I am about to walk into a street. over all I am much happier. Using these apps to communicate has also enabled to to better self advocate. The truth is for me, remaining nonverbal and using AAC apps to communicate has really increased my quality of life and oddly enough for the first time made me feel like I actually have a voice.

I am not trying to be bad or deceptive I am just trying to live my life the way that is best for me, even if it doesn't fit into the way people think it should be

         Yet I know there are many who would disapprove and scorn me for this. Sometimes I worry that I don't have a right to stop speaking and to only use my AAC for communication, I worry that because I am able to speak I am obligated to do so and I know many people including family who would tell you this. They would say "she can speak she doesn't need that device and it is wrong of to use it.", "There are people with autism who really can't speak and need to use those devices, it is disrespectful for to stop speaking and use that device when someone else has to rely on one to speak at all." They might accuse me of wanting attention or faking it and they would tell me "it is wrong to inconvenience others for your own comfort." So deep down I know some people will never understand me and with some It would never be accepted.

        In the end I need to do what is right for me, using the AAC apps for my predominant form of communication and only speaking occasionally in private with those I am close to has really helped me, it has restored some of what I have lost and as time goes on more of what I have lost is returning. I am happier, healthier and I am communicating and "functioning," better and so this is what I must do and what I will continue to do. I know there will always be people who will disapprove and who will think poorly of me because of this, however their approval or disapproval will not change what is right for me. I have been blessed with a few close friends, a fiancé and a few wonderful family members who know this is what I need to do, they both understand and support me in this and for that I am truly great full! They love and accept me how I am and for who I am, I could never begin to thank them enough for that or express to them how much that really means to me!

      I am only one adult with autism and these are my own personal experiences, I cannot speak for others on the spectrum. Yes I am an adult with Autism that was delayed in communication became verbal and use AAC apps and devices to communicate!

                

                                                    

We Need To Stop Treating AAC Like A Last ditch Option and so much more!

Im going to keep this short, I’m tired and low on spoons I have been for a while now, I mean low on spoons  but I wanted to get something out for Autistic speaking day.

We need to stop treating AAC like a last ditch option, so often I see parents waiting till their kids ore older to try AAC, they are told to try for speech  they believe that if they go straight to AAC that they will loose the opportunity for speech, but the science just isn’t behind this! Study after study has proven that if anything AAC helps promote speech  but more importantly they are loosing valuable time and spending years denying their kids access to communication methods in fear of not getting for mouth words. This isn’t just against the since it’s massively cruel, providing and teaching communication to your child should take priority over all else.  Not all of us will gain mouth words and that’s ok but it is critical you do everything to help us access methods of communication that work for us!

We need to do away with the idea of prove it low tech first this is archaic and BS  just google "everything wrong with prove it low tech first"and that should give you plenty of blogs with explanations.

Introducing comprehensive AAC early and modeling is critical

We need to start treating AAC like a language and we need to start valuing AAC as much as we do as mouth words!

We need to recognize that AAC access is important and critical for many individuals with a variety of persevered verbal abilities. i say perceived as all to often what you see is not all that we are trying to say or express but often we cant get all the right mouth words, or the wrong ones come out, or they wont come out at all even when we know exactly what we want to say.

there are many Autistic (and Im sure NTs) who can speak well or even exceedingly well but loose speech and need AAC part time. their need is no less real than someone who has never spoke a word.
some individuals need AAC to help them hold and process thoughts as they type them out so they can communicate clearly. Their need for access to AAC is real!

Some Autiscs have an easier time typing or using symbols than mouth word their need for AAC is real

Autistics  who ha intermittent speech, their need for AAC is rel

the autistic who has ne'ever spoke a words need for AAC is real

Autistics that type and speak the words as they types need for AAC is real

baseline if someone expresses and interest in AAC no matter how old or how verbal their need and right to have access to AAC is real and valid

we need to change the conversation around AAC, from something tabo to just another way some individual communicate.

lastly it is acceptable and we need to normalize switching between multiple modes of communication  be it

AAC-> sign-> sounds->pecs
0r
verbal speech-> AAC->sounds
or verbal speech-.sign
or
sign->AAC-> sounds ->letter board
or
letter board->verbal speech->pecs

and so on most any combination you can think of every individual has needs to be allowed their right to switch through ( yes even you)