Thursday, November 1, 2018

Brain fog autistic speaking dray 2018

Ok yes this is a scattered mess thinking is had right now I’m sorry

t’s autistic speaking day but it’s also the day after Samhain (Halloween ) so my brain is tired and I feel brained, I don’t know much what to say, I tell myself I need to remember to conserve my spoons and write this a week or a month ahead, it’s not like I don’t have plenty of blog ideas that come and go unwritten because I don’t get the spoons to sit down to write them down so they go un written. However once again that didn’t happen this year so this year I’m doing a short half processing spontaneous post, but perhaps that is most appropriate, to honor the day of rest and accept my own need for saving spoons, to not strain to make a perfect logical thought out articulate piece about my right to be as a human, or how being Autistic is , or about the rights to communication access or how autistic people are constantly devalued and talked over and how we are taking this day back to have our voices heard  because at the end of the day no owns value should be based on our ability to explain these things to you in a week though out way or to word and all communication is valid this is autistic speaking day and for today I’m communicating more with gestures than AAC and that’s ok my thoughts aren’t clearly typed and skcattered and still I’m autistic and human and my life aphasia value this way as doe every autistic no mater how we communicate or how much we appear to be aware or understand, our voice in all forms should speak of autistic experience and our live still have value. We shouldn’t need to prove these for you to accept theses

Tuesday, June 19, 2018

Eye-Gaze AAC for Autistics!

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

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

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

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

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

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

Monday, June 18, 2018

Happy Autistic Pride Day

Today is autistic pride day, and I really don’t have much I know what to say,  ca months ago I wanted to be sure to have some big post out for this day, but honestly? I’m still struggling to get back into the swing of posting again, and right now there is just so much going on in the world and in life  spoons are really low, so I want to keep it simple,  

Happy autistic pride day, remember to celebrate neurodiversity today, 
Uplift autistic voice,
Center the voices of Autistic PoC today! 
Presume competence 
Everyone has a right to AAC
Communication access rights are basic human rights! 
Embrace stimming
You are not a burned 
Your support needs are valid and matter and you deserve access to supports that’s are helpful and not harmful to you as an autistic person!

There is so much more I want to say, I want to make a long post about autistic culture, I want to talk about the importance of aac but right now none of it is falling into words, this year has gone by so fast I can hardly believe it, 

 I hope everyone has a wonderful autistic pride day! 

Wednesday, April 25, 2018

You are failing Autistics when you don’t prioritize AAC

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

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

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

AAC need to be the first step!

Communication is a basic human right!

Your first step must be Providing Access to communication

If it's not then you are failing Autistics!

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

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

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

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

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

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

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

Wednesday, November 1, 2017

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
verbal speech aac-sounds
or verbal speech-sogn
sign-aac sounds - letter board
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)

Tuesday, November 1, 2016

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,


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 )


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

Wednesday, June 1, 2016

The actual Autism crisis

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

           There is a very real and serious Autism crisis

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

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

No the crisis  is invasive, frightening and dangerous 

The Autism crisis is....

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

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

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

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

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

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

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

The fact we have to remind people behavior is communication 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The using of functioning labels to silence and function shame autistics 

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

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

The fact that functioning shaming is a thing 

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

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

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

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

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

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

The insistence one use of mental age

The idea IQ test accurately determine anything really.

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

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

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

The fact that services and supports for autistic adults especially in community supports are rare and hard to find 
The fact most services cut off at 22

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

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

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

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

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

The fact sensory issues are rarely taken seriously 

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

The fact we have to fight to be seen as humans 

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

The fact that our sexuality is ignored

the fact that we spend hours in compliance training

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

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

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

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

The fact we are often given little to no autonomy 

The rampant infantalization of autistics

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

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

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

the practice of forcing eye contact

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

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

The fact that we are seen as tragedies not people 

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

I know I am missing so many more!

This is the real Autism crisis

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

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

this is the Autism crisis Autistics face everydaay!

Image description white Germany Shepard wrappers in 2 blankets laying on a brown leather couch with head  on a white pillow dangling back over the side of the couch