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,

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

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




Monday, April 25, 2016

nightmares in grief.

   I dreamt about her again last night, this time i dreamed she ot loose and as it by a car before running off and vanishing, only to be found in our yard hours later in the dark, laying there breathing slowly dyingt taking her last breaths as i ran to her to old her only to have her lick my hand one last time before she passed, ever since nim died I have had dreams like this regularly  each one is different but each time she dies or s dying and is often unable to stand or get up that part makes sense she could no longer stand or get up on her own our last day with  her. I don't know what else to say here but i miss her.

Nightmares are  pretty normal experience in general though they have always been a bit odd in how i have them. Ever since I can remember I have had very vivid, graphic and detailed nightmares often they varied in topic.  they can be so bad that i wake and am afraid to sleep again. I may even get up and check the doors and try to calm myself enough by reading or watching comedy, or a favorite light movie to get back to sleep.for me nightmares have also always followed a pattern, I would go with out a single nightmare for weeks even months and then they would start, one night I would go to sleep and i would have a nightmare and from that moment on I would have nothing but nightmares for 1-2 weeks having as many as 4-6 a night then they would stop; and once again i would be nightmare free for a while until it started again. I still dont know why i have them in this sort of pattern and i still have them like this to this day,

        Last year is among the worst year i have have experienced to date, if not the worst in all honest, because last year i lost 3 very critical members of my family, a cat Lorien (she passed unexpectedly,  my  service dog Nim and my mom all within a short span of time from each other,. since then i have been finding blogging pretty hard, i just struggle to know what to write anymore, but I know my grief is manifesting is not how others might expect. in fact i find it very hard to show grief around even close friends and family, but I plan to try and delve into that in another post at some point. One of the ways that it seems to be manifesting for me right now is in the form of nightmares.

       I am experiencing the losses all over again in nightmares,  this is happening with both Lorien mom and Nim, but often switching around with who, most common ones are mom and Nim., sometimes the events are nearly exactly as they happened and sometimes they are completely different but each time i wake up and i just break down. recently Nim has been the main focus of these nightmares, not surprising as i used to have nightmares about losing her even when she was alive, but it was different then, then i could call her up onto the bed, or more commonly tun around and wrap my arms around her while i cried myself back to sleep in the comfort knowing she was there and it was ok, Now i wake up and she is still gone,  I can no longer just reassure myself "its fine it was just a dream,"  i cant simply "wake up and comfort myself that is will all be ok, because it isn't even if the events in the nightmare were far from what actually happened the end is still the same and waking up only serves to remind me at least one part was real.they are gone, one of my worst nightmares has come true, and now i relive her loss a dozen different ways in my dreams.

i dont know what else to say

   

Sunday, November 1, 2015

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




Friday, July 17, 2015

Crusading against hate! autis, speaks founders are NOT heros!

  hello,

         Recently People magazine featured bob and sussan wright as "heros among us"  They got a huge cover page and a story of coarse but here is the thing People if you had done a little research first on your subject matter you would have learned very quickly

Bobs and Susan wright are NOT heros! 


  • there is nothing heroic about dehumanizing Autistics!

  • there is nothing heroic in spread fear and stigma for your personal gain!

  • There is nothing heroic about fighting to keep autistic advocates out of the discussion of autism

  • there is nothing heroic about make an entire group of people feel like burdens and curses to their family!

  • there is nothing heroic about SHUT OUT the people you claim to speak for and silencing their voices!

  • there is nothing Heroic of parading parents in front of a screen to cry and say how much their child has ruined their lives!
  • There is nothing heroic about painting parents and caregivers who murder autistics in their care as victims faced with a horrible burden and turning the murder victims into the villains!  There is nothing ok about demonizing the person who's life was taken from them and turning the killer into a matter in a cry for more help!

  • their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding

  • There is nothing heroic about promoting organizations known for severe violations of human rights like JRC

  • Bob and Susan wright are NOT HEROS!!! Autism speaks hurts #actuallyAutistic people! the little good they have done pales in comparrison to the pain suffering, tears and harm they have caused building barriers of fear between Autistics and the community! Period!

white German Shepherd behind "boycott Autism Speaks" written in chalk
People magazine you may ot have realized this but by featuring them as heros and battling autism as a good thing you too have contributed to the steriotyping, dehumanizing, demonizing and spreading of hate and fear towards Autistics

people magazine the very title og your article was steeped in ablism, in ignorance and clearly designed to creat fear, fear of autim, T


My mom recently passed and I miss her more then anything one of her biggest fears was that my disability would mean my life would be valued less, she feared what societies view of my value as a person, or more appropriately lack of value in the eyes of a society that sees me as nothing more then a burden, would permit others to do to me, what rights would be allowed to be stripped from me because I was seen as worth less and a burden due to my autism, and most of all she feared if politics went really messed up I would be on a list of burdens to cull from humanity due to my disability, and while that last sentences sounds pretty extreme and unlikely  the rest of her fears were valid. And they are valid because of how autism speaks spreads awareness, because of how you portrayed autism in your Article,

Painting autism as something to be feared, to be battled paints autistic as less, so often you hear parents of autistic kids fearing what will happen to their kids when they die, well how you speak of autism will effect the answer to that directly, The message you send to the world is about autism and autistic is how 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! " (S,D)

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

Everyday autistics around the world hear how they are burdens, drains, need fixing, our murders are excused, we are told everyday our lives are worth less and burdens to our non autistic loved ones, at the same time our voices are silenced by organization like autism speaks when we try to speak up and say we are here we matter, 

Bob and Susan wright are not heros their organization shuts out and fights to silence autistics and silence our voices, they spread stigma and fear and excuse murder that is not heroic!

if you want to feature real heros look at the Autistics and our families who are fighting for acceptances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonetization of Autism because in a world the tells you we ar lost, broken and burdens the true heros are the ones who stand with us in love support and acceptances who lift up our voices, We are not broken, we are not lost we are here we matter and we deserve to be heard! So if you want to highlight heros highlight Autistics, high the parents and allies in autism acceptance who support neurodiveristy and acceptance those are the real heros!!








Thursday, July 2, 2015

They are not Heros! a post to people magazine on Autism speaks

hello,

         Recently People magazine featured bob and susan wright as "heros among us"  They got a huge cover page and a story of coarse but here is the thing People if you had done a little research first on your subject matter you would have learned very quickly

Bobs and Susan wright are NOT heros!
  • there is nothing heroic about dehumanizing Autistics!
  • there is nothing heroic in spread fear and stigma for your personal gain!
  • there is nothing heroic about make an entire group of people feel like burdens and curses to their family!
  • there is nothing heroic about SHUT OUT the people you claim to speak for and silencing their voices!
  • there is nothing Heroic of parading parents in front of a screen to cry and say how much their child has ruined their lives!
  • their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding
  • Bob and Susan wright are NOT HEROS!!! Autism speaks hurts ‪#‎actuallyAutistic‬ people! the little good they have done pales in comparrison to the pain suffering, tears and harm they have caused building barriers of fear between Autistics and the community! Period!
People magazine you may ot have realized this but by featuring them as heros and battling autism as a good thing you too have contributed to the steriotyping, dehumanizing, demonizing and spreading of hate and fear towards Autistics

if you want to feature real heros look at the Autistics and our families who are fighting for accetances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonization of Autism because in a world the tells you we ar lost, broken and burdens the true heros are the ones who stand with us in love support and acceptances who lift up our voices, We are not broken, we are not lost we are here we matter and we deserve to be heard!


Whit German Shepherd standing next to large chalk writing that reads "boycott Autism Speaks!





Tuesday, May 19, 2015

The need for a better case for Ipads used as AAC

Hello,
 
This is an updated version of my blog post "the perfect Ipad case" When I wrote that post this was the case I was using

Ipad have helped give many Autistics and individuals with many other disabilities a voice, but ipads are often very fragile and break easily as  result many of us but special cases to help protect our voices. over the years I have searched for the best ipad and while there are many great cases but there does not to be any cases with all the features many of us need. below are discussion of the 2 cases I have had with their pros and cons followed by a list of features for the most ideal Ipad case for an Ipad being used as an AAC device



As you can see it was a really nice case and had many great features to it.

1. It is very durable -it does a good job protecting my ipad mum the ever frequent accidental drops, falls,  bangs into walls and waps from the over excited Nimrodel's tail when I return home!

2.  It has a handle!!! - I absolutely love the handle feature to it!! I use the hand frequently and  ad you app an see I have also used the handle to add features to the case it didn't have.

3.  It is soft! -What you can't tell from this photo is that this case is actually a soft rubbery sort of material, (though the teeth marks on the handle might give a hint to that if you can see them!)   The soft material means it doesn't hurt as much when it bangs against my sides, it bounces off of hard surfaces realtivly easily and when it does it isn't very loud!  At night I hang my ipad up on a hook to charge and I do feel that the softer casing  makes this safer for the wall.


However it did have some very clear drawbacks for

.  the fist is a major drawback and by far the biggest is that it is not water proof. For e this is a feature that I really need. Using an ipad for communication as well as everyday basic living I need to be able to take out and use my ipad in the rain with out worrying about it getting ruined in the rain! A water proof ipad would also enabled me to hanging it up in the shower or be able to use it while spending time in the pool, fishing or any activity that may cause the ipad to come in contact with water.

2 it doesn't have a screen protector-while this can be bought at a store I do wish there was one a part of the case.

3  it doesn't boost the sound- this is another big one for me. Using the ipad for an AAC device means I need it to be able to be heard in public  so if the case could boost the sound (especially if it could do it significantly would be highly benificial!


A few months after writing this I got a new case, I got the Life proof case for my Ipad and I have really liked this case,



the plus

it is durable,
waterproof ( though I did have a life proof case leak on me twice so im looking into back up)
and holds up really well to being dropped


(a few of the down sides)

  1. no built in speaker (explained above)
  2. you have to buy the strap separately
  3. Flimsy strap attachment, the connectors for the strap are loops that are relatively easily broken ( I can go through them in 2 months or so, this is a pretty major down fall) *see images below*
  4. no built in screen protector (though my screen has held up well an glare resistant protective would be very useful and help reserve battery life)
  5. while i can use my head phones o have to use a wire adapter thing cant explain better but the headphones are prone to slip out
  6.  I have had a few leaks with past life proof cases especially with my phone but over all this isn't that common


The life proof strap attachment






    Another flaw with this case is the audiojack access, while it holds up well being able to use the audio jack require you use an adapter, that is an issue where the adapter is flimsy, as it screws into the case and is pretty much a cord that you plug your head phones into, this can get in the way and be easily broken, (see photos below) , ideally this could be fixed by making a water proof no cord based adapter, that seals the case but can remain inside the case with out risk of breaking or causing obstruction when positioning the case, 

    The normal port seal gasket thing a round lack pla skit thing with screw threads and a yellow gasket

    The poor gasket inside the case viewed from the inside of the case

    The cord adapter to be able to plug in the head phones mes  with a holder attached for the gasket

    The end of the adapter cord male plug in


    So what would be the perfect ipad case? (most important ones are highlighted)

    1.  MUST be FULLY water proof protect against being submerged at the deepest depth and longest time possible!
    2. be able to float
    3.  It MUST' be able to protect the ipad against, drops, falls, being thrown, stepped on and run over!
    4. Shock resistant,
    5.  Built-in high quality  Speaker with well Amplifies sound-  this is crucial when using the ipad as an AAC device! *This MUST also be waterproof) one of my biggest issues is the need to have an extra Bluetooth speaker that can be heard in large crowds this means i have extra weight to carry and adjust to ideally a case should have a speaker loud enough this is no an issue)
    6. Have a built in Screen protector  *ideally glare resistant*
    7.  Have a handle  and a good strap!
    8.  Should have a soft outside  (if possible  but the handle should defiantly be soft)
    9.  Light weight  
    10. Will NOT interfere with with wireless signal or blue-tooth
    11.  affordable!!!!! Seriously this shouldn't cost the same as a new ipad! Ideally this case won't cost more then $200
    12. Easy access to ports and have a way to use the ports and remain waterproof
    13. crush resistant/ crushproof 
    14. Has a stand and has mounts you can buy and use 
    15. MUST be available for Apple, Android, Kindel and other non apple Tablets phones and other AAC applicable proucts!
    16. Fire resistant
    17. Home screen protector , (it would be good the be able to block off the home screen button so it isn't accidentally hit and close out of app )
    18. Come in many different colors!!!!
    19. ideally the ability to have a softer outer case that can be bought as an attachments for easy gripping.
    20.  have a cover (otional)
    21. light weight
    22. Bonus points if it has some way to make charging iPad wireless possible (not sure it that's a thing)

    These are features that would be beneficial to many on the autism spectrum and using their iPads as aac devices or just as a general life organizational and maintenance tool.  It is crucial that these device be able to be used in a multitude of various environments and impacts. I pads are very expensive and when your ipad is your lifeline it really needs a case designed to handle everything life has to throw at it.. I really hope that someone could make this case and have it available to everyone!