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 percieved 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 Autistics (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 neever 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 converastion around AAC, from something tabo to just another way some individual communicate.

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

AAC- signs- sounds-pecs
0r
verbal speech aac-sounds
or verbal speech-sogn
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)

Autistic Speaking Day I'm just going to be me

growing up I spent years learning very hard how to blend in, and yeah I largely failed at it, it seems  but still there are parts of me I blocked up and away  to try to blend, like shimming, I stim, a fair bit less than I did when I was little (though I am told I still stim a lot) adapting my communication and other things,

But 

Blending in is not my goal 

I just want to be me 

I'm tired of trying to fit into everyone's boxes of how they think I /should be,  

Everyone has these expectation 

Either I must be or try to seem non disabled and I must be this (fill in chain of behaviors social skills, likes and dislikes, ways of communicating subjects of interest leaguer activities and interacting here) way to fit in to blend (said way burns out all spoons and is not achievable at all even with my best effort put forward )

Or

I need to be autistic and disabled in exactly /this/ way (fill in arbitrary random expectation of what people expect me to be like and my life line to have looked like as a white autistic CIs disabled female) to have my current needs communication needs/style validated 

If your a certain age you can't like xyz 

If your disabled you can't like (fill in arbitrary things here)

I'm tired of having things that I have learned, skills I have gained relationships in my life and other things used as ways to invalidate my disabilities,

Growing up I went through a phase where I worked hard to blend because I was told and I believed it was the right thing to do, that how I would be successful, happy so I gave it my alll and when this stage hit I sort of failed in horrid ways  it was a mess,  i also wasn't able to properly figure out where and how and that's way to much to write about the day after Samhain, I mostly just stood out a lot more and looked a lot weirder,.....and then I started a weird mix of trying to pass harder while not caring and embracing being the weird one,

I'm still the weird one, the strange one and I embrace that  but I no longer want to burn my spoons to try and pass, I just want to be me,  I'm now learning to accept myself, and my limitations,  and that it's ok to use support  and do things in ways that I prefer and that work better for me.

That doesn't mean I'm backsliding 

That doesn't mean I'm faking 

That doesn't mean I'm trying to be deceptive 

That doesn't mean I'm lazy 

It just means I want to find and do what's right for me 

I just want to be me 

I am going to do what works for me, when anyone else does that it's considered a life skill, many times people find tricks and short cuts that work for them and help them and they are seen as adaptive and unique and resourceful, and everyone is encouraged to embrace themselves and be who they are unless who you are is autistic, then you are encouraged to blend and those things that might help you or things that are useful to you that might be seen as creative in a non autistic and be famous on Pinterest, is now a seen as a nusaaunce accomidation and something you should adapt passed needing, and if you do  for a little while then  your expected to be able to all the time.But here is the thing that's not how our brains work, if we can sometimes manage with out a support that doesn't mean we no longer need or will benefit from it.

And I'm tired of it all

Everyone else is allowed to be themselves, and I just want to be me, and that's what I'm going to do, because I can't afford to burn spoons on pretending to not be me, 

So I'm going to stim 

I'm going to communicate in the way that works best for me (AAC)

I'm going to use visual supports

I'm going to rely on the services I need

I'm going to enjoy my souixie and the banshees, London after midnight, the cure, mission U.K., switch blade symphony,as well as non post punk bands and some metal 

I'm going to switch between black clothes with reds greens and purples and earphones 

I'm still going to carry my pikachu in my backpack 

I'm going to swim and hike and go play at the park and do things I like 

I'm going to study geailge (Irish) and build an Irish vocabulary in my AAC app 

I'm going to hopelfully onday again partner with and use a service dog 

I am Autistic 

I am neurodivergent 

I'm just going to be me and these things are parts of me.

I've never fit into anyone's boxes perfectly ever and I'm not going to 

I'm just going to be me

Comming out, telling friends and family you communicate using AAC

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 

Criticism

"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

Autism speaking day there is just to much to say.

 Autism speaking day there is just to much to say.

Hello, so I am going to have to make this short as I am writting this last minute, I had hoped to have something nice long, elegant and elaborate written, but sadly other obligations have gotten in my way this year. Some of the reason is also indecision. What did I want to write about?

Part of me wanted to write about autism service dogs, real autism service dogs, dogs who are trained task. Maybe tell you a bit about how when your an adult with autism it is nearly impossible to find an proper program that will train a service dog for you. Or how most autism service dogs are cross trained as a service dog for someone with autism is trained tasks to help deal with the sensory issues and sensory process challenged that come with autism. I thought about telling you how most programs only train for children with autism and how these program not only use but promote a dangerous practice known as tethering, then I thought about explaining how this puts both the child and dog in harms way. I thought about telling you how many programs are scams and many more are just poorly informed well meaning programs who train cookie cutter service dogs for autism often with tasks that are weak at best such as deep pressure, if they train tasks at all but will sell their service dogs on the emotional benifit. I thought about ranting how we deserve better than this and need to stand up for reform not just for the adults but for the kids and for our families who shouldn't be taken advantage of or put in harms way.

I also consider telling you about how I have read a lot in the news lately about the need for services for kids and how few of them there are and that's true! However what everyone over looks os there is even less and basically nothing for adults over 22!!!! How today there are hundreds of autistic adults struggling without the services they need. I thought about how this too was something important I wanted to talk about.

I also wanted to talk about communication. I wanted to tell you verbal speech isn't the same as having few or no daily struggle and challenges, how autistics who are verbal still may need substantial support through out their lives. How being able to speak and even do so well can often hide the fact you can't communicate. Because often times people who are fully verbal still can't communicate. It is one thing to talk about a special interest but a whole new thing to get the words "I'm hungry," "I'm hurt," or be able toe press even more complex needs, thoughts and emotions. I wanted to tell you that individuals who can speak often loose the ability at times and they aren't being bad or trying to get attention or whatever. Their brain has shut off their ability to communicate it's something that happens. It is important to realize this isn't their fault and to be patient . Offer additional supports or just give them time and space.

I want to tell you about acceptance and how it isn't given up. I want to tell you acceptance is about embracing the whole person autism and all and loving them! Acceptance is saying yes you are autistic your brain works differently and instead of trying to change you into someone else we are going to take you by the hand and together we will find your strengths and build on them and we will help you find ways to cope and manage with the proper supports in the areas in which you struggle because acceptance isn't about given up and not trying. When you truly manage to embrace and find acceptance it becomes a road to progress, growth and development! It's setting goals and not given up working with what you have instead of trying to be something your not and that is the best thing in the world you can do for yourself or your child.

I wanted to talk about functioning labels and tell you why they don't work and how they only hurt autistics. I want to tell you no one fits perfectly into these labels and they only get in the way of progress by causing people to put limitations on a child causing people to not really want to put effort into them or cause them to be written off instead of never giving up and working towards helping them  build their strength. They also cause people to be over looked in their challenged and supports they need causing individuals to have to struggle daily because they can't get needed supports because people see them As a useless label of high functioning and assume they must be fine since they seem high functioning to them

Lastly though I wanted To tell you about AAC! Aac stands for alternative augmentative communication. They are methods of communication such as PECs (picture exchange communication), Sign language and things such as type to speak or symbol communication apps for the iPad like proloquo2go or taptotalk.  When it comes to AAC I want you to know this, AAC is for EVERYONE not just those who can't speak, but for those who are verbal but may lose the ability or those who are verbal and need help with word retrieval or just plain feel better communicating via AAC. I want you to know that everyone has the right to communicate in the method in which they prefer and feel is best for them. There is so much focus on getting verbal when our focus should be on providing communication as soon as possible! It is never to early or to late to introduce AAC!  It is important to model AAC too. communication is key! So providing communication option as soon as possible is massively important! OH! And  and don't rule out iPads if your child isn't responding to pecs or ASL! For many of us the iPads are a lot more intuitive! most importantly presume competence

Anyways these were only a few things and very very abbreviated sorry this years entry is short and messy but it's Halloween night and I am exhausted  thank you for reading this

     -AutismDogGirl