Monday, November 10, 2014

Dear JetBlue your Partnership with Autisticm Speaks will hurt Autistics

 Dear JetBlue
                Hello,  I am a non speaking Autistic adult. I recently became aware of your partnership with Autism Speaks.. I am very glad to hear your organization is interested in supporting those of us living with Autism.  It means a lot to me as an Autistic adult. That is why I am writing you to make you aware that Autism speaks is an organization that not only is hated by  the majority of people they claim to speak for but also hurts the autistic community. There are many issues with Autism speaks which have lead to a large scale boycott of their organization.  Autism speaks excludes autistics from their borders. One of the major stances in the disability rights movement was nothing about us without us," this is something autism speaks is in direct violation of a Currently Autism speaks has not one Autistic person on any of their important board or position of power within their organization. Another major issue is how they promote and spread their awareness. Autism speaks has continually used negative propaganda and fear to promote their awareness this directly hurts the autism community as it not only promotes harmful stigmas against those of us with Autism but it also dehumanizes those of us living with autism. They paint Autistic individuals as a burden  and a drain on our families. A recent example of this was Susan writes call to action when she addressed congress  on Autism. She painted Autistic lives as a tragedy and told congress our families aren't really living.  they were eating and breathing but not living.
                This sort of rhetoric s not only offensive not only to autistics but to our families. She goes on to suggest we will grow up to be burdens on society and will always be dependent and incapable of obtaining any real meaningful independence or future. This is incorrect and extremely harmful on many levels. With the proper supports and services a large number of individuals on all ended of the spectrum have managed to go to school, work and even some got married and had kids of their own! Additionally This serves to shame and dehumanize those of us who may never be able to be independent and overlooks our value as people. This also puts the lives and safety of autistics in danger! By painting us as a burdeN that will drain the economy and ruin our families autism speaks tells the world that we are less then human, by demonizing autism they demonize autistics, this not only creates fear of us but it also makes it easier for people to deny us our basic human rights and even harm us with little to no consequences!  When a group of people are viewed as less it becomes easier for society to overlook them. People have historically done a great many horrible things to each other because they saw one another as less! Their propaganda plays to pity spreads stigma and creates fear. in the word of Evan J. Kemp Jr. "Playing to pity may raise money, but it also raises walls of fear between the public and us.," and to quote  Drew Morton Goldsmith in his documentary No pity " No one's desire for a cure can ever justify reinforcing a stigma against disabled people.

          Autistics and our families have tried to reach out to autism speaks  many times in the past, telling them their awareness methods were harmful and stigmatizing however Autism speaks did not listen. To this day Autism speaks continues to shut out and ignore the voices of individuals who speak out against them.. Often dismissing an autistic person as to mild or a parent as having mild children and thus "not being the people they want to speak for," However even people with severe autism like Amy Sequenzia are speaking out against autism speak. Another major issue with Autism speaks is that only3-4 percent of the donations they receives actually go towards services and supports for Autistic individuals and our families. This means they are actually taking valuable much needed funding out of the community. funding that could be going to organizations that actually provide services to individuals and our families! This is a huge issue where there currently just aren't enough services and supports available to us and our families and those that are available are very expensive. Donating money to organizations that provides services help them provide services to more families  and helps provide the funding for these much needed services!   The ironic part of all of this Autism speaks recently released a documentary called "sounding the alarm battling the Autism epidemic" in which they spent a lot of time talking about the lack of services  However autism speaks only spend3-5 percent of all their donations on services and supports for Autistics and our families!
                Autism Speaks is the only charity I know of that is  so heavily resented by the people they claim to speak for and represent. In fact there are several individuals who strongly consider autism speaks to be a hate group/\. They may be the first charity ever (or at the very least in recent years) to be considered a hate group by people they claim to represent!
Here is a joint letter to all cooperate sponsors of Autism speaks explaining in detail more of the issues requiring Autism speaks. Please do read this
        I regret to inform you due to your partnership with Autism speak, an organization that hurts Autistics though their continued spreading of stigma, creating and spreading of fear of Autism while simultaneously  shutting out and silencing the very people they claim to speak for. I can no longer use you airline and I will be telling all my family and friends to choose other airlines for as long as you continue a partnership with Autism speaks.
          I am very glad and excited that you wish to show your support for people with Autism (Autistics) and our families! this really means a lot to me . so please consider partnering with other Autism organizations that provide services and work every day to improve the lives of Autistics and our families I hope you will choose to listen to the voices  of the Autistic Community, our families and supports by families and no longer  partnering with Autism speaks.

here are some great Organizations that help autistics and our families! 

Autistic Self Advocacy Network
Autism Society of America
Autism Women's Network
Easter seals
Doug Flutie Foundation
                                                Thank you for your time

More links

No pity

boycott autism speaks

is autism speaks a hate group?


Saturday, November 1, 2014

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


Thursday, October 16, 2014

Redoing the Alexicom review

I just discovered something new about Alexicom while checking things before publishing my review so I will be doing more testing before I publish

- sorry for the delay im sorry

Saturday, August 23, 2014

Updates changes and backed posts

       I wanted to write a quick blog post to give everyone a bit of an update. I am going to bee adjusting and making some updates and changes to this blog over the next few months. I also have a few  over dues reviews including my review of the Alexicom app and posts I have not published typed. Please be patient  this havps been an extremely busy several months but I will post them as soon as I am able.

Thant you for your time and understanding


Sunday, June 29, 2014

, @SesameWorkshop you cant combat stigma by teaming up with theorganization that spreads it!

Dear Sesame Street,

         This was one of the flash blogs I have been more passionate about. I was raised with Sesame Street! It is a beloved childhood memory for me, along side lamb chops!  Growing up as a very small child I was very sick. I ended up having open heart surgery at the age of 4! One of my favorite movie was big bird goes to the hospital. I would always watch it before I went and over and over again at home. This show acted as a social story for me and greatly helped ease a lot of my anxieties. I admit to humming or playing the main song from it to this day at times I have had to take my retired service dog  or my pup in training to the vet. Especially to emergency vets. So you see, your show still has a place in my life today! So I wanted to make sure I did this blog post right.  Before I wrote this blog I did a bit of research and red some of the things there bloggers had posted, then I decided to read through the comments section.of a post shared by the huffington post. It was heart breaking to say the least. There were people and parents commenting about how this boycott and the boycott of autism speaks is all "high functioning," autistics and not by "real severe autistics," or that their kids had severe autism and autism ruins lives ect. There were a lot of great replies by other autistics to such comments. But those comments to tell the truth still hurt I started to wonder if I should write this blog?  I started to think that maybe I didn't have a place to speak on this, because maybe I was to "high functioning," and people would see me as to high functioning and thus anything I had to say on this matter would be tossed aside as not having value because I wasn't severe enough. I decided that, eepven if that does happen I still need to write this blog and get it out. So here we are!

        Why am I mentioning this??? Because this is the exact type of message autism speaks sends out! They promote an us vs them mentality in the autism community. Autism speaks demonizes autism and use fear about autism to raise awareness an get their funds.  When autistics have spoken out to them on this they dismissed them as to high functioning. This is a form of shaming I call functioning shaming. They are saying if you do not like what we say about autism you are to high functioning and your voice doesn't matter. The truth is this boycott isn't just by those with high functions autism you will be hearing from many with moderate to severe forms of autism as well. Functioning shaming is very damaging and the truth is those who tell you we are all high functioning and thus don't have the right to speak on this matter don't know us, they don't know our lives our challenges or struggles. Please don't fall for the functioning shaming. The truth is functioning labels are even real diagnostic labels and have been proven to be unsound, and they are often based on of someone can't speak or not. However there are plenty of people on the spectrum who are verbal to highly verbal but can not care for themselves or live independently and there are those who are nonverbal that have decent self care skepills and may one day live on their own.  Don't dismiss the many and diverse voices of this community.

 As well as reading what others have written I watched the video with Abby the fairy where the autism speaks partnership was introduced. Susan wright talked about an initiative to combat the stigma of autism and to celebrate the amazing in all children. I admit I was in a bit of shock, because you see autism speaks is one of the biggest promoters of the stigma surrounding autistics!!!!

It really baffles me that they claim to want to address the stigma and promote acceptance of autism cause they are the biggest contributors from their autism every day video to their address to congress last fall.

  They tell you they want to help fight the stigma and promote understanding and acceptance of autism,so let's examine a piece of their work really quickly. Tell me if this sounds like promoting acceptance and understanding for autism and combating the stigma. in their address to congress in a call to action they stated

 "These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.

This is autism.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  

This is autism.

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally.  Physically.  And especially emotionally.

Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.

Maybe their child has been trying to bite them or themselves.

Maybe they can’t afford the trip to a doctor specializing in autism.

Maybe there is a waiting-list for ABA, speech and OT. 

Maybe their insurance won’t pay.

Maybe they don’t have the money to pay a special lawyer to fight for school services.

This is autism."

They went on further to say this;

""Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

This is a national emergency. We need a national autism plan – NOW."

They completely ignore the vast diversity of the spectrum and pain an image that everyone with autism is like this and that those who are like this basically aren't human. They don't celebrate their amazing they stigmatize and spread fear.

     How is this not promoting the stigma and demonizing those with autism? This isn't acceptance and fighting for acceptance this is pure unfiltered fear and dehumanization.  This isn't combating the stigma or showing the amazing at all!  It's just a lot of harm and stigmatizing. 

You see much the same message here I am Autism here and in Autism Everyday here.
Here is what autism speaks really says  the messages they have continually and my views on them.

Autism speaks tells you we are lost, locked away and unreachable 

   We are not we are here, we hear and understand everything you say even if we can not speak we understand you! We are right here listening waiting for you to reach out and meet us where we are at and to love us and accept us for who we are, not where you wish we were or who you wish we could be.

Autism speaks says we don't communicate: 
 we can speak or do speak we are ALWAYS communicating with you, it just isn't in ways you expect! It's ok to be anxeous it's diffrent I know but if you put aside everything you have been told  and all your preconceived notions of how things should be and really open your heart and your mind you can find away to reach us, but you have to be ready and willing to enter our world. 

Autism speaks tells you our lives are a tragedy,

   We are not tragedies we are people who live, yes we are disabled yes we have challanges but our lives matter we still have value the real tragedy is the fear and dehumanizations spread by organizations like autism speaks so they can get your money  

Autism speaks will tell you  we don't have a future,

      We do have futures and with the proper supports and services and with understanding and acceptance from the community we can have fulfilling and bright futures,  If we are taught to embrace our passions  and build our strengths then we are capable of anything we may dream! All we need is the right supports, services and acceptance 

Autism speaks tells you we are puzzles missing pieces

  But we are not, our lives and challenges  may be puzzling to you and navigating your world maybe puzzling to us, but we are whole and complete people! We aren't broken! Many autistics don't like the puzzle pieces because of the negative things autism speaks has attached to it, but the autism ribbon is multiple puzzle pieces and wasn't created by autism speaks, autism speaks has on single blue puzzle piece that reflects pretty well their one sided narrow view on well as the negative messages they spread. I how ever embrace the multiple puzzle pieces, they are bright and vibrant and uniques as each person on the spectrum, the variety of colors to me show there is a large and amazing spectrum of people living with autism, I also see them in a different way! Not that I or any other autistic is broken or missing pieces but rather that we are whole complete amazing beautiful individuals and it is the community that is missing pieces, these pieces are the proper supports, services acceptance and understanding, with those pieces we can become part of the community! However I do acknowledge and respect that some autistics do not see it this way and perfer to not use puzzle pieces and that ok too.

Autism speaks tells you they speak for and advocate for autistics 

The truth is they don't! Rather quite the opposite. They actively seek to silence autistics! From their very beginning autistics have spoken out to them, trying to explain to them why their adds hurt autistics and what they should change! They never listened! They shut out every one of them! A few years back a 14 year old girl made a parody  sight on them after they made their "I am autism," video that Basically demonized autism and was honestly really creepy! The site mirrored how autism speaks spoke about autistics only for NTs or non autistics they went after her, claimed she owed them a tone of money in lost donations then said they wouldn't make her pay if she signed over the rights to her website,! They BULLIED an AUTISTIC CHILD!!  To add to this autism speaks has never had a single autistic person on their boards of decision maker or in any meaningful positions in their organization. There is a stance in the Autism community Nothing about us with out us. Yet Autism speaks feels they can and should tell you all about us, without us and they have no problem trying to shut us up and silence our voices when we object to how they do it.  recently a bill has been up for re approval, the combatting autism act (think of this title for a minute) which was changed to the autism cares act (a much better title) there was a very big amendment to this bill that was purposes that autism speaks BLOCKED!!

For a clear explanation :

That's right they blocked an amendment that would require autistics to be involve in several of the  boards and such that are part of the autism cares act! It that isn't actively trying to silence autistics what is?

               Autism speaks doesn't speak for autistics, autism speaks hurts autistics!

We can't continue with this type of awareness! You can not combat the stigma by partnering with an organizations that spreads it to get donations.  

Sesame Street you have always been about inclusion and treating each other as equals. This is why I hope you will and I ask you to please, hear our voices and reconsider this partnership with autism speaks!  You will find and see a ton of people reaching out to you asking you to reconsider this partnership as well! autism speaks doesn't value equality or understanding. This is an organization that really hurts autistics! We as a community are excited you want to create an initiative to promote acceptance and combat the stigma so Please consider other organizations such as Arc, The autism self advocacy network or the autism women's network. These organizations do promote, acceptance and true understanding. They value the lives views and voice of autistics something autism speaks does cant combat a stigma by joining forces with those who promote it!

Saturday, June 14, 2014

We need an AAC community!!

    I am not sure when or if this will be doable but I want to creat a community somewhere for Nonverbal semi verbal partially verbal and even verbal adults with autism and other disabilities who are either full time part time or just occasional aac users as well as parents friends family and even professionals like speech pathologist ect to come together and share tips advice and most importantly to share things like symbols to use with AAC devices and visual supports. Right now I am working on looking into how to get this type of things set up. it will keep you informed as I work on figuring this out. If you have any suggestions please feel free to comment or send me a message 
                   Thank you 

Editting Alexicom voice

So, I am using the free version of the Alicom for this testing, I have been fiddling som with the voice as at first it was male and completely un understNdable . After. A bit though of playing with the setting I managed to get a voice that is realtivly clear and tolerable. Below is a photo of the settings I am using for voice, how ever I may fiddle with the voice settings a bit more.

One major down side I am finding is there isn't a simple preview button in the settings to hear the voice while Editting it so I have to change a setting then go back and test it out, which can be time consuming and a bit frustrating.