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.
Sunday, June 29, 2014
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.
Here is what autism speaks really says the messages they have continually and my views on them.
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 autism.as 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 : http://autisticadvocacy.org/2014/06/asan-statement-on-autism-cares-act/
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 not.you cant combat a stigma by joining forces with those who promote it!
Saturday, June 14, 2014
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
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.
Sunday, June 8, 2014
I am a bit late on this as everything has been kind of very busy here! But I am about to begin my testing session of the Alexiocom. I am going to be testing the free version of this app first and may when there is a sale test paid version later. Tomorrow's starts the first day of the testing!! In the meantime here is a nice screen shot of the opening page symbol :)
Saturday, May 24, 2014
What is an autism service dog?
Link : http://www.ada.gov/service_animals_2010.htm
"Under the ADA, service animals must be harnessed, leashed, or tethered, unless these devices interfere with the service animal’s work or the individual’s disability prevents using these devices. In that case, the individual must maintain control of the animal through voice, signal, or other effective controls."
Link : http://www.ada.gov/service_animals_2010.htm
Odds are if you are reading this you are already familiar with autism but for those who may not know, Autism is a complex neurodevelopment disorder that affect both verbal and non verbal communication, social skills and sensory processing.
Autism service dogs (also call SSIG or sensory signal alert dogs) are dogs trained -Tasks- to help an Autistic individuals, these are general tasks that help with the sensory processing issues many of us on the autism spectrum experience. Things such as hearing and guide work may be taught for individuals who have trouble processing or who are either over or under responsive in the ares of visual and auditory processing. Autism service dogs may also be trained to retrieve objects and such during overload that help the individual communicate or get through the overload. During overload autism service dogs may also help guide handler out of a building or to a quiet place where they can safely recover. Each autism service dog is going to be trained different tasks based on the needs of the handler.
Unfortunately many organizations don't train proper autism service dogs and out right refuse to train them for adults, there are a few that do though. Autism service dogs can help give an adult with autism independence and drastically improve the quality of life of autistic individuals.
Things that are not tasks/ do not qualify a dog as a service dog
- Any natural -untrained- behavior
- Guarding handler
- crime deterrent
- Increasing socialization,
- Natural calming presence
- Search and rescue (though a handy side think not really a legal task such as it is define)
- Basic obedience such as sit stay come ect
- Laying under a table
- Emotional support
- Increasing confidence.
- Watching the child or adult
- Helping individual make friends
- Natural untrained alerts
While there is no doubt some of these things listed above such as natural ale retrying and offering emotional support are helpful and can have a massive positive impact they are not legally considered work or tasks. There are others on this list like babysitting a child or tethering that are not work or tasks and should never be promoted as such.
Service dogs for children
This is an extremely complicated and emotionally charged area to talk about, the truth is this is a really grey area.a lot of parents first look into autism service dogs as a I way to get help with things they find challenging with thier children, bolting and wandering be the primary and some want them to help this kids make friends. As stated above this is not actually a task or work. Service dogs are not babysitters and shouldn't be trusted to watch over your child anymore then you trust a toddler or a wheelchair to babysit your child. A service dog need to have tasks that help the child. Another issue is that of stewardship most autistic children simply are not able to steward a dog. while it is clear and should be common sense a 2-4 year old can't steward thier own dogs it is also important to remember many older children still aren't able to do this, Most children with autism can't care for themselves much less steward thier own dogs. something that is required by the Ada of any service dog handler, however there we some who will be great candidates for a service dog and will be able to steward their own dog and may really benefit from one. so an inability to steward ones own dog can't be blanketed to all children. So really this needs to be decided on a case to case basis,
if you are considering a Service dog for your child here are some things you need to do and consider
you need to first you need to do is consider Why do you want a service dog? If you want it for emotional support then you might want to look instead into an emotional support animal see below. If you want it to make your job as a parent easier or to serve as a physical anchor to prevent your child from wandering or bolting off in public then a service dog really isn't right for you. Please reconsider and or think of other ways the dog might be trained to help your child!
next you need to determine if your child can steward thier own dog, if not will you or a staff member be able to be with them at /all/ times that they are with the dog and the dog is working?
What sorts of things does your child need help with? What can the dog do to help your child? *remember the dog has to help the child not you as the parent* it is also important to remember what things do not count as tasks as many organizations will try to sell you a 5-30,000 dollar sd based on these non tasks!
Service dogs are expensive and a /lot/ of work, do you have both the time and money for one of these dogs? While the benefit from a service dog can be amazing it is important to remember the cost isn't just what you have to pay or raise to get the dog it is also the dogs care over a life time, you will need to pay for vet bills both annual and for any emergencies, food, toys ect. You will also need to maintain the training which will require regular daily training session and then find time for exercise and play for the service dog. Are you able to provide all of this? Do you have the resources you need to provide this? Are you ready willing and able to make and to take on such a serous commitment?
Taking on a service animal is to take full responsibility for the health and care of this animal over a life time! Eventually the dog will get hurt or sick and eventually the dog will get old and will need to retire and sadly will eventually die! What do you plan to do if the dog gets sick, injured and can't work anymore? What about when it gets old and needs to be retired? If your answer is to just drop the dog off at some shelter once it is old and used up a service dog is not right for you! These dogs need care well into their old age when you takes on a service dog you are promising to be there until that dogs last days as painful as they will be.
Getting a service dog isn't like getting a full time babysitter it's like getting a second child!
These are only a few things to consider before getting an autism service dog for your child,
I made this it's own category on purpose
Tethering is a dangerous practice used by most "autism service dog organizations" as a method of preventing wandering. While wandering is an issue I take very serously and something I struggle with as an adult with autism I can tell you right now this is a very dangerous and borderline unethical and borderline abusive practice there are risks to both dog and child!
Note the ADA requires the handler be in control of their service animal,however tethering puts the animal in control of the child, which is technically a violation of that ADA requirement
Injure and strain on the jigs joints When a child suddenly decides to bolt
If the child is strong enough the dog could end up getting dragged by the child. Additionally a child who is strong enough could knock the dog off balance or cause it to stumble should they bolt suddenly . while this is not a likely occurrence with smaller children kids grow and become both bigger and stronger.
The dog that is tethered to a child can't escape and may be injured by a child who is melting down especially if they are prone to violent outbursts as they are a close target
To the child
- A fall or physical injury caused when the child tried to bolt and the dog does as it is train and stop and sits or lays down. The child who is bolting will rather suddenly be stopped and could become injured
- Service dogs are still dogs, sometimes they make mistakes, should this happen while a child is tethered to the dog especially if the isn't a parent holding the dogs leash, known as tripod ding, the child can be knocked down and possibly dragged by the dog should they try to chase a squealer.
- Last but not least and the most frightening the child could be attacked or get caught in the middle of a dog fight! Unfortunately service dogs have on many occasions been attacked by other dogs while working, usually by a dog who is off leash or if someone brings their dog up to try and greet your working dog! A child who is tethered to the dog when such a thing happens runs the risk of severe physical and psychological damage!! Are you will to risk having your child tied to a dog that is being attacked by another dog or animal?
Some organizations also promote tethering more then one child to a dog, this is out right abuse plain and simple and will increase risks to both kids and dogs
More info on tethering please read
Finding a proper program is very challenging as many organizations that claim to train autism service dogs are often placing tether or search and rescue dogs, often these are what people call cookie cutter dogs and are sold often on the emotional benefits and don't tend to train tasks that help the child.
If your an adult looking into getting an autism service dog it is going to be even harder most organizations refuse to train service dogs for autistic adults period! There are a few good ones that do by they are very hard to find!
Alternatives to tethering
As I have stated wandering is an issue that I take /very/ seriously! As an Autistic adult wandering is something I still struggle with regularly and I know several wonderful Autism parents who have lost amazing children to wandering. tragic deaths that should never have happened! however tying a child to a dog is not a safe or good solution! here are some alternatives ( I will update this as i find new ones)
- have a soft handle attached to the dogs vest for the child to hold on to.
- Have mason alert flyers ready for an emergency with current photo, child or adults name, age, if they are verbal, nonverbal, semi verbal or may become non verbal, what they and the best way to approach and communicate with them, sensory aversions, what not to do and a list of local hazards and things the child is drawn to like water, Also make sure to have contacts list a written description and any identifying features.
- ID on the child such as a medical alert bracelet
- tracking device
- use a stroller if you are able
- tether the child to you and not the dog: if you are still concerned about bolting and you really need to tie you kid down so they cant run off tether them to you! you are the parent/caregiver and you can better understand and take being hit or kicked during a meltdown! you are also generally stronger than a dog.You are also much less likely to forget what your doing and try and chase a surreal!
When looking for a program
- Avoid any Program that promotes non tasks as tasks such as emotional support and natural reducing of meltdowns or says the dogs will be protective of you or the child
- Ask about tasks, ask for examples of tasks they might train
Emotional Support AnimalsEmotional support animals (ESAs) are a great alternative to a service dog, the handler of an emotional support animal doesn't have public access rights that service dogs do, how ever they do have special housing rights. Emotional support animals do need to have some basic manners and may even be natural a letters but they generally aren't task trained like service dogs must be. Though they can't come around public with you ESAs are can be highly beneficial alternative to a service dog as they do provide the child or adult with emotional support and their presence may naturally help calm calm the person, reduce meltdowns ect
Learn more: http://servicedogcentral.org/content/ESA
Wednesday, April 9, 2014
Every year in April autism speaks asks you to "light it up blue," for "autism awareness" and while all the major cities,towns and people who have a loved one with autism or wish to show support for autism are putting out blue lights to show support and spread awareness for autism.
I will NOT be lighting it up blue!
Instead A few friends and I are hanging up Christmas lights!
"......Wait.....what? Well why are you hanging Christmas lights? Are they blue Christmas lights?"
Nope they have many different colors, we hang the multi colored Christmas lights. Sure there are some blue lights, but also green, yellow, pink maybe some purple.
"Why are you hanging them why not just blue? Your autistic shouldn't you be eager to light it up blue and spread awareness for autism?"
Eager to light it up blue NO! spread awareness for autism well yes...but MORE importantly to spread ACCEPTANCE and UNDERSTANDING!!! And that's why I hang the Christmas lights instead!
When it comes to the light it up blue event,I used to really like it, I thought it was nice because to me in one way it was nice, nice to see this massive out pouring of support from all the people in the local towns to the major cities and countries all around the world! We used to enjoy riding around to see how many blue lights we can see in the neighborhood. Or local cities!
However now it is something else, while I still appreciate seeing the support from everyone it is also a very sad sight for me to see as well.
"But how can it be sad?....oh you mean because of how many people are affected by autism?"
No, it is sad to me because to me it is just one giant advertisement for autism speaks!!!! Autism speaks's color is blue! Blue is NOT the "color of autism," it is the color of autism speaks. In fact autism doesn't have one specific color to represent it! the autism awareness ribbon created by the autism society of America is made up of multi colored puzzle pieces, and while there is much controversy over it I feel it is a far better representation for autism then the single blue puzzle piece, additional organizations like the Autism Self Advocacy network, while they don't use the awareness ribbon their symbol is made up of a spectrum and variety of colors! It is really quiet lovely
when people see all these blue lights they will likely go and google why it is if they don't already know and they go looking for why there are so many blue lights in April it will lead them to information about autism and right to autism speaks.
I disagree with autism speaks for Many reasons, mostly due to how they allocate their budget, the fact they have zero autistic people in power, their refuses to listen to autistics and their use of fear and negativity to promote their "awareness," you can read here where I go into more detail on the issue.
Another reason I don't like lighting it up blue is because blue is the color of the child abuse awareness ribbon!!! Lighting it up blue should be to spread awareness of child abuse NOT autism!!!! Child abuse awareness month is also in April by the way! The ironic thing is people used to believe autism was caused by child abuse, today we know very well this is NOT the case, but there is something about the child abuse awareness ribbon being blue and that false belief that make lighting it up blue feel very wrong to me, like I am promoting the idea of child abuse causing autism, which is extremely WRONG!!!
April is autism awareness month but big organizations like autism speaks seem to make it all about them! It is their time to really get into everything, local tv news, talks shows, commercials and stores asking you for your money, your donations. Claiming to "help autistics and their families," when only 3-4 percent of the donations they get actually go back to the community! Essentially taking money from more important places in the community such as arc or Easter seals who actually provide services, therapies and interventions for those living with autism! Most of their awareness is based on garnering donations through the use of fear. Awareness is no good if it is done through fear!!!
A few friends and family of mine have decided to say enough is enough! We are taking back April and autism awareness month! We are making this April about autism and promoting acceptance, we are making it about the accepting autism, understanding autism, we are making it about autistic individuals, their families, friends, teachers and care givers!! Not about organizations like autism speaks, April is for those of us living with autism We want more then Awareness we want Acceptance! We DONT want April to be about lining the pockets of autism speaks, or for it to be a giant add for an organization that dehumanizes autistics and has several times over the years shut out autistic voices and refused to listen to them, so let's spread acceptance for the entirety of the autism spectrum not just the severe or mild end! So we decided to do our own thing for April
So instead of lighting it up blue, we lights it up with Christmas lights!!!
Christmas light for acceptance of the entire spectrum!
Christmas lights to say "we are taking back April for those living with autism! We will not the spread the promotion of hate and fear by organization like autism speaks trying to get your money! We stand for acceptance support and understanding not fear! April is about those of us living with autism NOT about Autism Speaks!!!!
Sunday, January 19, 2014
Dear friends and family,
I have a favor to ask of everyone, it is really just a small little thing but it can make a big difference! I ask that you please STOP supporting -Autism Speaks- "why?" you might ask? Autism speaks spreads fear and hate of autism, when an individual on the spectrum mild or severe tries to give them input they shut them out and ignore them. What is worse is they have been known to actively try and silence those who speak out against them! Autism speaks has zero autistic people on their board of people in power in the organization and only about **3-4 percent****of the money that you actually give them goes back into the community and helps people and families living with autism!!!
I know you are trying to help and want to promote awareness so instead please consider donating to organizations like ARC, Easter seals, the autism self advocacy network or the autism society of America. These organizations provide services and help for adults, children and the families living with autism everyday. Nearly 100 percent of your donation will go back into the community and will help change lives!!! I know people often say "yes, but autism speaks helps raise awareness ," but what good is awareness when it is spread through hate and fear? The cofounder of autism speaks recently addressed Washington in a "call to action," where she said that families who have children with autism aren't living, that they are just surviving, they suggested these children today have no good future but will live solely as a burden on society. This is autism speaks brand of awareness. I know many will say "yes well there are people who "have real autism," and they are severely disabled and have real challenges far worse then yours and this is the reality for them and their family,"To this I have only a few things to say
1. I am very aware of the fact that there are people who have "more impairments," due to their autism.
Why should this take away the value of what I have to say about how awareness of a disorder I live with is spread? Is that how it works? If you have learned ways to cope and Manage in spite of your challenges, if you make progress in life through extensive years of intensive therapy and a lot of help and supports from friends and family, does then suddenly your voice, your experiences and your opinions have no meaning? Do they no longer matter? Do the voice of those on the even milder end not matter? Does our progress then take away our right to have a voice in this community and make it ok for organizations to dismiss us and bully us into silence?
I sure hope not, because if you have answered yes to The above paragraph then you are saying, if you have a child with autism, that once they make progress, then all their challenges before didn't matter and if one day they do manage to build coping mechanisms, even if they are on the severe end, and with the proper supports manage to live a life that makes them happy, that their experiences, struggles trials and tribulations mean nothing, that it is okay for society to devalue them and dismiss their challenges because they can manage and now because they made progress they should not be allowed to have a voice!
This is not a message that I could ever stand behind or support! I am sorry!
2. Just because someone is "more effected," doesn't mean that their lives have less value! shame on anyone who even thinks such a horrible thing!!!!!! There are manny parents who have children on the severe end but they still embrace life, they still love their child and believe their child's life has value so do I and so should you!!!!
http://emmashopebook.com/2013/12/06/autism-speaks-and-signal-boosting/ (love this blog)
http://emmashopebook.com/2013/12/06/autism-speaks-and-signal-boosting/ (love this blog)
3. There are severely affected disabled autistic adults speaking out like Amy Sequenzia who wrote several different articles on the subject Here and Here and Here she is non speaking, can't feed or dress herself ect but she can type and she is speaking out! what about her? Does her voice not matter because she learned to type? Did her learning to type devalue all her years of struggle and challenges,?
No of coarse not!!!!!! They are still just as important, just as relevant, and just because she doesn't want to be seen as a curse, a crisis or a burden but instead she wants to be seen as a person with views, values and opinions, it doesn't mean that people should ignore or shut out what she has to say!!!
4. People on the mild ends are still affected! Sure not as severely as other but they still are and they still face daily challenges. Just because someone is on the mild end doesn't mean they don't need help or services, it doesn't mean they don't have severe challenges of their own. They are different yes but it doesn't mean they aren't just as hard, just as impairing and it surely doesn't take away their needs for help and support!
5. Just because someone has a milder form of autism, or because they have managed to develop coping mechanisms and aphabe the proper supports in place so that they are able make it through the day it doesn't make their autism or their challenges any less real. Nor does the fact that there are people who are more severely affected. We need to put an end to this "but he/she has it so much worse,"
please stop that!
Don't compare and don't keep score, this practice hurts both individuals both the one you are telling "other people have it worse" and the person you are comparing them to! Both individuals have their own unique obstacles and challenges and both have their own uniques strengths! Don't hurt them by using one to devalue the challenges or strengths of the other!
Now I am not saying it has to be all positive when talking about autism! I am not saying make autism sound like the most amazing thing on the planet, because it's not. There are some good things about it and there are some bad things and both sides need to be shown for true awareness. I am saying There is a better way to do awareness. A way to raise awareness with out devaluing and dehumanizing those living with the disorder. With out spreading fear and hate but instead speaking of the challenges while promoting, hope, understanding and acceptance!
Your heard an example of autism speaks message above, what if instead of using fear, calling us diseased or stolen you tried something like this...
When you tell about what life is like for someone with autism talk about their struggles and challenges but not in a way that demonizes them
How not to do it
" it is just so hard xxxxx can't handle growls, or loud noises so we are stuck at home all the time and I have to do all this work with him and his therapies take up so much of our time I just don't have a life outside of him his therapies cost me so much money and I have had to remortgage my house 4 times just to afford them. Soon we will likely have to fall in to bankruptcy! Autism has completely ruins our lives and when he grows up and ages out we will be on our own and he will never (fill in the blank)."
Instead think something like this. (Yes I changed the gender because both gender can have autism)
"My daughter has a lot of challenges, large crowds and loud noises are overwhelming her so we don't often go to parties but we still try to go out and do things, and we find new ways to have fun, because she doesn't speak and has so.many issues with sounds, lights, low crowds and sensory issues she requires a lot of specialized therapies such as speech and occupational therapies unfortunately these keep us pretty busy and they cost a lot of money, especially since insurance doesn't cover them, however with help and support, things such as therapies covered by insurance, job training, peer leadership help with the education system our child potential for a full and happy life are limitless. We as the parent also need some extra support, things like respite so we can have a day to get things done for our selves, support groups and therapies help everyone stay on track. Our child is amazing she is determined and very smart. She has some serous challenges she faces but with help and support from the community I know we will make it
Ok yes I know these aren't great example, but i was going for contrast and frankly have been having a bit of trouble figuring out how exactly to word my examples.
So here are some better example on how to do it
This is loud may be a trigger but shows how it can be
These are much better examples and I won't over load you but they are positive while making you aware of the issues!
The point is how the message is presented . Remember autistics are people, we have views, opinions, emotions and even if some of us don't speak we can still understand you! The message you send to the world is how your child and 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! " -Samantha Driscole
No one with autism no matter how severe is less than human because of their challenges, challenges don't take away from your humanity!
Another thing they tend to do in their movies and awareness is talk about how much autism costs the families and how much autism will cost the society, while it can understand this to an extent this puts a price tag on each autistic persons head. It reduces us to a figure further dehumanizing us and reducing our value and they never provide context. What is this compared to an a non autistics and on what end are we talking! Either way I think it can be a very dangerous practice and I see it as part of the fear rhetoric!
Now when I write reviews I always try to give advice to the app makers on what they can do to fix or improve their application, so I will do the same here as well for Autism speaks!
Autism speaks, my issues with your organization have been listed above here are something's that you could do to change.
1 We'll first and for most you will need to make some major changes to your organization and it will be some time before you can gain back some of the trust you lost but to start you will need to get at least ****2**** or -More- individuals with autism on your major bored a governing decision making and they will need to actually have some power in the organization
2 LISTEN to autistics!! On all ends of the spectrum encourage them to give advise and take their suggestions for change
3 change HOW you spread awareness! This is extremely important! If you want to be advocates for autism you will need to do better! you need to stop this fear rhetoric! You need to add some positives and you need to STOP dehumanizing those with autism and referring to us as lost kidnapped or a burden!
4 improve how you spend the money you recieve, you only have 1 star on charity navigator because of how little of your funding actually doges to your stated cause
5 consider adding and providing services!!! Many people on the spectrum are really adverse to a cure, if I thought one was possible I wouldn't object to having one found for those who wanted it, but I don't actually believe there will ever be a cure! That said if you wish to continue finding a cure that's fine but Consider using some of your budget to provide free family services like recpit, interventions, equal education, job training and placements. I think if I had your funding I would focus more on helping those with autism find their voices and less on a cure! I saw a protest sign once suggesting how many iPads you could provide with a portion of your salary and I have to say that would be an amazing idea!!! What a way to -actually help- autistic???? Especially if they came preloaded, or gift cards to cover the purchase for a communication app or two???? Now that would be an amazing service
6. Oh yeah hire autistics
7. Make a public statement of your intentions and dedication to change and to these or other changes
Honestly if I some home became the head of autism speaks I would instate these changes, I would put most of the money from the funds to providing service and iPads with communication apps to the family. Would also change the slogan to something like
"Autism speak, helping autistic find their voices,"
And that would be my goal as well. Not so much a cure but supports and helping other autistic be able to communicate! I don't think I would continue research into a cure, but maybe allocate research to issues autistics and our families face every day and finding solutions!
And I would change the symbol to a more complete puzzle but these are the changes I would make
These are my suggestions for autism speaks
Yes it will Basically require a gutting and rebuilding of your organization
To my friends and family, thank you for taking the time to read this and for considering saying no to autism speaks! For more information please look through the links I have listed below
This is the best and a MUST read!!!