Wednesday, April 9, 2014

Autism it's not just Blue


Hello
     
     Every year in April autism speaks asks you to "light it up blue," for "autism awareness"  and while all the major cities,towns and people who have a loved one with autism or wish to show support for autism are putting out blue lights to show support and spread awareness for autism. 


I will NOT be lighting it up blue! 


    Instead  A few friends and I are hanging up Christmas lights! 

    "......Wait.....what? Well why are you hanging Christmas lights? Are they blue Christmas lights?"

     Nope they have many different colors, we hang the multi colored Christmas lights. Sure there are some blue lights, but also green, yellow, pink maybe some purple.

    "Why are you hanging them why not just blue? Your autistic shouldn't you be eager to light it up blue and spread awareness for autism?"

        Eager to light it up blue NO! spread awareness for autism well yes...but MORE importantly to spread ACCEPTANCE and UNDERSTANDING!!! And that's why I hang the Christmas lights instead!

       When it comes to the light it up blue event,I used to really like it, I thought it was nice because to me  in one way it was nice, nice to see this massive out pouring of support from all the people in the local towns to the major cities and countries all around the world! We used to enjoy riding around to see how many blue lights we can see in the neighborhood.  Or local cities! 
  
        However  now it is something else, while I still appreciate seeing the support from everyone it is also a very sad sight for me to see as well.

    "But how can it be sad?....oh you mean because of how many people are affected by autism?"


     No, it is sad to me because to me it is just one giant advertisement for autism speaks!!!!  Autism speaks's color is blue! Blue is NOT the "color of autism," it is the color of autism speaks. In fact autism doesn't have one specific color to represent it! the autism awareness ribbon created by the autism society of America is made up of multi colored puzzle pieces, and while there is much controversy over it I feel it is a far better representation for autism then the single blue puzzle piece, additional organizations like the Autism Self Advocacy network, while they don't use the awareness ribbon their symbol is made up of a spectrum and variety of colors! It is really quiet lovely

   when people see all these blue lights they will likely go and google why it is if they don't already know and  they go looking for why there are so many blue lights in April it will lead them to information about  autism and right to autism speaks. 

      I disagree with autism speaks for Many reasons, mostly due to how they allocate their budget, the fact they have zero autistic people in power, their refuses to listen to autistics and their use of fear and negativity to promote their "awareness," you can read  here  where I go into more detail on the issue.

        Another reason I don't like lighting it up blue is because blue is the color of the child abuse awareness ribbon!!!  Lighting it up blue should be to spread awareness of child abuse NOT autism!!!! Child abuse awareness month is also in April by the way!   The ironic thing is people used to believe autism was caused by child abuse, today we know very well this is NOT the case, but there is something about the child abuse awareness ribbon being blue and that false belief that make lighting it up blue feel very wrong to me, like I am promoting the idea of child abuse causing autism, which is extremely WRONG!!!

       April is autism awareness month but big organizations like autism speaks seem to make it all about them! It is their time to really get into everything, local tv news, talks shows, commercials and stores asking you for your money, your donations. Claiming to "help autistics and their families,"  when only 3-4 percent of the donations they get actually go back to the community!  Essentially taking money from more important places in the community such as arc or Easter seals who actually provide services, therapies and interventions for those living with autism!  Most of their awareness is based on garnering donations through the use of fear. Awareness is no good if it is done through fear!!!

        A few friends and family of mine have decided to say enough is enough! We are taking back April and autism awareness month!  We are making this April about autism and promoting acceptance, we are making it about the accepting autism, understanding autism, we are making it about autistic individuals, their families, friends, teachers and care givers!!  Not about organizations like autism speaks, April is for those of us living with autism We want more then Awareness we want Acceptance! We DONT want April to be about lining the pockets of autism speaks, or for it to be a giant add for an organization that dehumanizes autistics and has several times over the years shut out autistic voices and refused to listen to them, so let's spread acceptance for the entirety of the autism spectrum not just the severe or mild end! So we decided to do our own thing for April

So instead of lighting it up blue, we lights it up with Christmas lights!!!

Christmas light for acceptance of the entire spectrum!  

          Christmas lights to say "we are taking back April for those living with autism! We will not the spread the promotion of hate and fear by organization like autism speaks trying to get your money! We stand for acceptance support and understanding not fear! April is about those of us living with autism NOT about Autism Speaks!!!!

Saturday, January 18, 2014

A small favor, Please stop supporting Autism Speaks

Dear friends and family,  

      I have a favor to ask of everyone, it is really just a small little thing but it can make a big difference!  I ask that you please STOP supporting   -Autism Speaks-  "why?" you might ask? Autism speaks spreads fear and hate of autism, when an individual on the spectrum mild or severe tries to give them input they shut them out and ignore them. What is worse is they have been known to actively try and silence those who speak out against them! Autism speaks has zero autistic people on their board of people in power in the organization and only about **3-4 percent****of the money that you actually give them goes back into the community and helps people and families living with autism!!!  

      I know you are trying to help and want to promote awareness so instead please consider donating to organizations like ARC, Easter seals, the autism self advocacy network or the autism society of America. These organizations provide services and help for adults, children and the families living with autism everyday. Nearly 100 percent of your donation will go back into the community and will  help change lives!!! I know people often say "yes, but autism speaks  helps raise awareness ," but what good is awareness when it is spread through hate and fear? The cofounder of autism speaks recently addressed Washington in a "call to action," where she said that families who have children with autism aren't living, that they are just surviving, they suggested these children today have no good future but will live solely as a burden on society. This is autism speaks brand of awareness. I know many will say "yes well there are people who "have real autism," and they are severely disabled and have real challenges far worse then yours and this is the reality for them and their family,"To this I have only a few things to say

1. I am very aware of the fact that there are people who have "more impairments," due to their autism.  

Why should this take away the value of what I have to say about how awareness of a disorder I live with is spread? Is that how it works? If you have learned ways to cope and Manage in spite of your challenges, if you make progress in life through extensive years of intensive therapy and a lot of help and supports from friends and family,  does then suddenly your voice, your experiences and your opinions have no meaning? Do they no longer matter? Do the voice of those on the even milder end not matter? Does our progress then take away our right to have a voice in this community and make it ok for organizations to dismiss us and bully us into silence?

I sure hope not, because if you have answered yes to The above paragraph then you are saying, if you have a child with autism, that once they make progress, then all their challenges before didn't matter and if one day they do manage to build coping mechanisms, even if they are on the severe end, and with the proper supports manage to live a life that makes them happy, that  their experiences, struggles trials and tribulations mean nothing, that it is okay for society to devalue them and dismiss their challenges because they can manage and now because they made progress they should not be allowed to have a voice!  

This is not a message that I could ever stand behind or support! I am sorry! 

2. Just because someone is "more effected," doesn't mean that their lives have less value! shame on anyone who even thinks such a horrible thing!!!!!!  There are manny parents who have children on the severe end but they still embrace life, they still love their child and believe their child's life has value so do I and so should you!!!!
http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

http://emmashopebook.com/2013/12/06/autism-speaks-and-signal-boosting/   (love this blog)

3. There are severely affected disabled autistic adults speaking out like Amy Sequenzia who wrote several different articles on the subject  Here and Here and Here she is non speaking, can't feed or dress herself ect but she can type and she is speaking out! what about her? Does her voice not matter because she learned to type? Did her learning to type devalue all her years of struggle and challenges,?  

No of coarse not!!!!!! They are still just as important, just as relevant, and just because she doesn't want to be seen as a curse, a crisis or a burden but instead she wants to be seen as a person with views, values and opinions, it doesn't mean that people should ignore or shut out what she has to say!!!

4. People on the mild ends are still affected! Sure  not as severely as other but they still are and they still face daily challenges. Just because someone is on the mild end doesn't mean they don't need help or services, it doesn't mean they don't have  severe challenges of their own. They are different yes but it doesn't mean they aren't just as hard, just as impairing and it surely doesn't take away their needs for help and support!

5. Just because someone has a milder form of autism, or because they have managed to develop coping mechanisms and aphabe the proper supports in place so that they are able  make it through the day it doesn't make their autism or their challenges any less real. Nor does the fact that there are people who are more severely affected. We need to put an end to this "but he/she has it so much worse," 

please stop that! 

Don't compare and don't keep score, this practice hurts both individuals both the one you are telling "other people have it worse" and the person you are comparing them to! Both individuals have their own unique obstacles and challenges and both have their own uniques strengths! Don't hurt them by using one to devalue the challenges or strengths of the other!

Now I am not saying it has to be all positive  when talking about autism! I am not saying make autism sound like the most amazing thing on the planet, because it's not. There are some good things about it and there are some bad things and both sides need to be shown for true awareness. I am saying There is a better way to do awareness. A way to raise awareness with out devaluing and dehumanizing those living with the disorder. With out spreading fear and hate but instead speaking of the challenges while promoting, hope, understanding and acceptance!  

Your heard an example of autism speaks message above, what if instead of using fear, calling us diseased or stolen you tried something like this...

When you tell about what life is like for someone with autism talk about their struggles and challenges but not in  a way that demonizes them 

How not to do it
      " it is just so hard xxxxx can't handle growls, or loud noises so we are stuck at home all the time and I have to do all this work with him and his therapies take up so much of our time I just don't have a life outside of him his therapies cost me so much money and I have had to remortgage my house 4 times just to afford them. Soon we will likely have to fall in to bankruptcy! Autism has completely ruins our lives and when he grows up and ages out we will be on our own and he will never (fill in the blank)."

Instead think something like this. (Yes I changed the gender because both gender can have autism)

"My daughter has a lot of challenges, large crowds and loud noises are overwhelming her so we don't often go to parties but we still try to go out and do things, and we find new ways to have fun, because she doesn't speak and has so.many issues with sounds, lights, low crowds and sensory issues she requires a lot of specialized therapies such as speech and occupational therapies unfortunately these keep us pretty busy and they cost a lot of money, especially since insurance doesn't cover them, however with help and support, things such as therapies covered by insurance,  job training, peer leadership help with the education system our child potential for a full and happy life are limitless. We as the parent also need some extra support, things like respite so we can have a day to get things done for our selves, support groups and therapies help everyone stay on track. Our child is amazing she is determined and very smart. She  has some serous challenges she faces but with help and support from the community I know we will make it


Ok yes I know these aren't great example, but i was going for contrast and frankly have been having a bit of trouble figuring out how exactly to word my examples.

So here are some better example on how to do it








 This is loud may be a trigger but shows  how it can be


 


 

These are much better examples and I won't over load you but they are positive while making you aware of the issues!

The point is how the message is presented . Remember autistics are people, we have views, opinions, emotions and even if some of us don't speak we can still understand you!  The message you send to the world is how your child and autistics will be viewed. 

If the message is that we are drains, burdens and that we destroy the marriages and live of our families then people we see us a such and they will view us as less then human.  And in the words of a friend of mine 
"Here is the problem with the fear rhetoric, it makes people afraid it dehumanizes those living with this disorder, it enables people to see them as less and that is very dangerous!!, extremely dangerous! When you view someone is less it is easier for people to do all sorts of awful things to them, use them as experiments, rape, kill or lock away in some institution where not even their basic needs are met left to sit in their fecal matter. If we present our children and loved ones as burdens then that's how they will be treated! No on will want to help them, they will be seen as drains and their value will be lost to others. And al the things I listed above will continue to happen as they do today! How can we expect society to help and stand up for our loved ones when we are telling them our children are nothing but a problem, a burden and saps on the economy! " -Samantha Driscole 

No one with autism no matter how severe is less than human because of their challenges, challenges don't take away from your humanity!

Another thing they tend to do in their movies and awareness is talk about how much autism costs the families and how much autism will cost the society, while it can understand this to an extent this puts a price tag on each autistic persons head. It reduces us to a figure further dehumanizing us and reducing our value and they never provide context. What is this compared to an a non autistics and on what end are we talking! Either way I think it can be a very dangerous practice and I see it as part of the fear rhetoric!

Now when I write reviews   I always try to give advice to the app makers on what they can do to fix or improve their application, so I will do the same here as well for Autism speaks!

Autism speaks, my issues with your organization have been listed above here are something's that you could do to change.

1 We'll first and for most you will need to make some major changes to your organization and it will be some time before you can gain back some of the trust you lost but to start you will need to get at least ****2**** or  -More- individuals with autism on your major bored a governing decision making and they will need to actually have some power in the organization 

2 LISTEN to autistics!! On all ends of the spectrum encourage them to give advise and take their suggestions for change

3 change HOW you spread awareness! This is extremely important! If you want to be advocates for autism you will need to do better! you need to stop this fear rhetoric! You need to add some positives and you need to STOP dehumanizing those with autism and referring to us as lost kidnapped or a burden!

4 improve how you spend the money you recieve, you only have 1 star on charity navigator because of how little of your funding actually doges to your stated cause

5 consider adding and providing services!!! Many people on the spectrum are really adverse to a cure, if I thought one was possible I wouldn't object to having one found for those who wanted it, but I don't actually believe there will ever be a cure! That said if you wish to continue finding a cure that's fine but Consider using some of your budget to provide free family services like recpit, interventions, equal education, job training and placements. I think if I had your funding I would focus more on helping those with autism find their voices and less on a cure! I saw a protest sign once suggesting how many iPads you could provide with a portion of your salary and I have to say that would be an amazing idea!!! What a way to -actually help- autistic????  Especially if they came preloaded, or gift cards to cover the purchase for a communication app or two???? Now that would be an amazing service

6. Oh yeah hire autistics

7. Make a public statement of your intentions and dedication to change and to these or other changes


Honestly if I some home became the head of autism speaks I would instate these changes, I would put most of the money from the funds to providing service and iPads with communication apps to the family. Would also change the slogan to something like 

"Autism speak, helping autistic find their voices," 

And that would be my goal as well. Not so much a cure but supports and helping other autistic be able to communicate! I don't think I would continue research into a cure, but maybe allocate research to issues autistics and our families face every day and finding solutions!

And I would change the symbol to a more complete puzzle but these are the changes I would make


These are my suggestions for autism speaks  

Yes it will Basically require a gutting and rebuilding of your organization 

To my friends and family, thank you for taking the time to read this and for considering saying no to autism speaks!  For more information please look through the links I have listed below 
     
                                            -AutismDogGirl




IMPORTANT LINKS 
 This is the best and a MUST read!!!


         






Friday, January 3, 2014

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


I am an adult with Autism, yes I am 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 fiancĂ© 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!
               
                                                    -AutismDogGirl