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