I am an adult with Autism, yes I am verbal and Yes I use AAC apps to communicate!
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!