Sunday, November 1, 2015

Coming out, telling friends and family you communicate using AAC

This post by AutismDogGirl was originally posted on Non-Speaking Not Silent.

Recently I have found myself struggling in needing to talk to more family and friends about AAC and my need for AAC. It is something that for me is often scary, it is frightening to family and friends about your need or preference for using AAC to communicate.  It is scary not know how they might react but it can be even more frightening when you do have some sense on how they might react, so for Autistic speaking day I want to talk a bit about coming out on AAC use.

For those who do not yet know AAC stands for alternative augmentative communication these are non speech based forms of communication, some examples would be Sign language, Braille, picture cars, letter boards and  dedicated speech devices or tablets with communication programs on them, but so too body language, books, news letters, emails,, notes letters and even the Internet are all also forms of AAC . So in reality everyone uses a form of AAC, this is something most people don't seem to realize, and even though people almost everywhere use and even rely on some form of AAC daily, the forms autistics may use such as using a tablet to speak are all to often met with resistance 

When it comes to Autistics who have little to no verbal speech at all Often we and our families struggle and have to fight to gain access to AAC. All to often there is a fight just to get AAC methods covered or provided through insurances or through school,  there is all to often the idea that an autistic must prove we are capable or here before anyone is willing to believe in us, or to see us as capable and worth putting funds and efforts towards providing AAC,  this is an attitude that needs to change! Often when a family wants to look into AAC for their loved ones they will be discouraged by being told it is to costly, their child needs to prove themselves first or worst of all they are "to severe" to learn or use AAC or it might "hinder the preffered verbal speech" this is something that has been proven to be wrong and it has actually been shown on several occasions that implementing and providing a comprehensive AAC system, modeling how to use it in many individuals has encouraged verbal speech development. But far more importantly it provides a path to communication and let's our voices be heard,  even when a school or insurance provides AAC it can be a fight to get friends and family to accept the need for AAC, they may try and push for speech, AAC isn't valued like speech is and our basic rights may be Violated by having our devices or AAC tools taken from us as punishment especially when we are struggling, having a bad day or just are in a terrible mood!

While people might be familiar some with the struggles in getting  AAC for those of us who are non verbal or minimally verbal, there is a side that is rarely known about and almost never discussed are the issues Verbal Autistics experience in getting access to AAC, as well as the issues we face in getting people to both understand and  accept our use of AAC for communication. when we have some level of speech especially when people outwardly view our speech as being good or even exceptional speech we are not perceived as having any communication issues or challenges, and it is often believed we don't need and won't benefit from the use of an AAC device or system!

The truth is when we may seem to have adequate or even excellent speech we may still benefit from AAC and believe it or not in spite of having great speech in some cases we still may really NEED to have and use an AAC system. There are many Autistics I have spoken to and know many other Autistics who use AAC when they lose the ability to speak, something that many "verbal"  autistics actually have to deal with, when this happens we can't speak period, this is a situation in that the need for AAC should be pretty clear!  However people often will not believe that there is a real need for AAC and will often accuse us of "faking it", "seeking attention" or trying to avoid something by not answering when we truly can not.

For many of us despite  having some speech or even having good speech we still struggle on a daily basis to use our speech to communicate and though it isn't obvious, things people assume we are able to do such as expressing our needs or describing things or events, we struggle to do so through speech and may be unable to express those things through speech even when we are able to tell you all about something we love, but through the use of AAC we are able to communicate these things far better then we can through speech. In fact there are many of us who have a brain body disconnect that means what we can get out of our mouth is far less then what we want to or are trying to express, and sometimes it will be in no way related to what we were trying to say at all, 

this is something I struggle with a lot, I also tend to lose the ability to speak often in stressful situations but also in over load and sometimes for no reason at all. For me speech also causes a lot of issues and impairs my ability to process visual information, and actually causes many challenges and impairments for me that I have written about in other posts, for all these reasons, even though I gained speech after being delayed in speech as a child  I gave up the use of speech except in a few special situations, this wasn't something I decided over night, it was something I put a lot of thought into and discussed with doctors therapists and  a few close friends and family. I won't go into the whole story here as I have detailed it in another post, the short version of it was after a lot of work and testing it became clear my ability to communicate and do so effectively  through AAC  was significantly greater then my ability to do so through speech, we also found that after long periods with out speech a few areas I had severe impairments showed marked improvement though far from being completely fixed, things such as awareness of my environment coordination body awareness all improved, though I still struggle with them when I use verbal speech for a long time these become much more impaired. So it was agreed upon by my doctors, therapists, friends and family and even my mom! that  inspite of having verbal speech i do in fact need AAC and I benefit substantially using it op as my main form of communication,

While I have the support of doctors, my mom and a few close friends and family, There are still people in my life who i don't typically see often or interact with much that I still need to discuss this with, and with whom I need to explain everything to, Until I am able to talk to them about this I often will turn my verbal speech back on when interacting with them, This can be hard for me to do and is very stressful, I often feel like I am hiding part of who i am from them and sometimes this can sen me into a spiral of doubt about my need for AAC, even though that is silly, it happens because the whole time I am with them i am trying to figure out how to explain it all to them, I am thinking about all the things they might ask or say and i need to plan out how to reply to those things and I also need to think about the criticisms i might get after explaining it all so I can be ready for them, I know this will take time for the people i am explaining it to to understand and process, so i worry about that too while scripting how to talk to them and all to often i fail at getting it out,  So even though I have been using AAC for my primary form of communication for a while now I am still  needing to  discuss this with friends or family members who have known me for a while and who know me as being "verbal."  I need to find away to explain this to them and hopefully help them understand and accept AAC as my primary form of communication and really how i need to communicate.

 This is something that can be really hard to get people to understand. There are still people in my life who I still am struggling to get to understand, I know I am not alone in my struggle as a Verbal Autistic in having my need for AAC be understood and accepted, I know this is a struggle almost all verbal Autistics often have to battle with when they use AAC,  weather it is for short periods, on occasion,  as their predominant form of communication or to simply help them express themselves better when they feel it is something they can communicate better through typing;  using AAC will  often be met with resistance, doubt and criticism,   Here are just a few examples of the criticism and challenges verbal Autistics that use AAC may face  when using AAC or discussing their desire or need for AAC with friends and family 


"You don't really need that"
"Then they will never talk"
"Your faking"
"You may loose verbal skills"
"But I love your voice"
"It's inconvenient"
"Your just doing it for attention"
"But you never needed AAC before"
"You only have mild autism you don't actually need this" 
"that us only for people who can't speak at all"
"You speak fine,"
"You don't really need it there are other with real autism who can't speak at all,"
"At least you. can speak" 
"But it's so slow"
"But You can't use it while you work" 
"But i know someone who has a relative with severe autism who can't use AAC or speak at all so you shouldn't use it, you don't really even need it"

Theses are only a few of them there are many more but I'm to tired to remember them.  But these are things we often hear, when a verbal autistic comes out to you about needing AAC 
remember when you send a text or an email out on Twitter or face book you too are using a form of AAC,  everyone has the right to use their preferred method of op communication, 

When I first came out to my mom she was very skeptical and I promised to use speech with her in private, with time she saw the difference using AAC  made for me and the ways in wich it improved my ability to communicate and my ability to manage in times i would have otherwise not been able to, over time I have slowly come out about my need for AAC to others and I have had a mix of reactions.over time my mom not only accepted my use of AAC but she was very supportive of it and that meant the world to me!  Still I have people I need to come out to about my need for AAC and that scares me, I worry they won't understand, but I can't keep using speech with them just because I am afraid to talk to them, it isn't being true to myself, it is harmful for me to do so and it takes resources I need just  to be able keep up the verbal speech for them. 

Coming out as an AAC user is hard and scary especially if you have verbal speech,but we need to be able to come out to you,   Please keep in mind not to use any of those phrase I listed in criticisms  

The truth is most of them are wrong and all are damaging. Many of them comparing the verbal autistic to another autistic you perceive as having it worse are not only hurtful they are degrading and insulting to both autistics, the verbal AAC user and the autistic you view as more severe. Both have equal right to AAC, everyone has the right to their preferred methods of communication, please also remember just because someone can't speak it doesn't  mean we aren't communicating! Behavior IS communication!! Presume competence in all cases of autism!! I can't stress this enough!

Please do not compare us to other autistics to dismiss our challenges that's not ok and it is degrading to them overlooking their strengths and their value as a person. the truth is if we are coming to you and telling you we want to use AAC or that we need it, it is because we do need it, please understand this isn't for attention and we do have real challenges you aren't able to see yourself, telling you about our need for AAC is terrifying and what we want and need the most is your support and understanding. It means everything to have that. what we truely want and need most is acceptance,  even if you may not agree with it please do your best to be understanding, trust us and supportive. The thing we need most is your Acceptance not judgement.

Thank you

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