Monthly Archives: December 2015

Sample Tweets for #AutisticWishlist

Join Boycott Autism Speaks on Twitter tomorrow December 16, 2015 (@boycott_as) as we tell advocacy organizations what Autistics really want from them!  Autistic people will be speaking, are you listening?    Use the hashtag: #AutisticWishlist

 

My #AutisticWishlist for advocacy includes: listening without dismissal or challenging us, no puzzle pieces, no blue. #BoycottAutismSpeaks

 

I want advocacy orgs to focus on amplifying Autistic individuals more than their parents/caregivers. #AutisticWishlist #BoycottAutismSpeaks

 

Advocacy groups need to represent Autistic adults as well as kids! #AutisticWishlist #BoycottAutismSpeaks

 

My #AutisticWishlist for advocacy orgs includes providing actual services instead of just providing lip service. #BoycottAutismSpeaks

 

My #AutisticWishlist:  Organizations that include #ActuallyAutistic parents too!

 

My #AutisticWishlist is for advocacy orgs to recognize #intersectionality & include & embrace ALL Autistic people

 

Advocacy organizations should have an overwhelmingly #Autistic leadership, do not tokenize & dismiss us! #AutisticWishlist

 

Reject the language of pathology and embrace the neurodiversity paradigm.  #AutisticWishlist #BoycottAutismSpeaks

 

My #AutisticWishlist would include supports & accommodations across the lifespan not cures & eugenics!  #BoycottAutismSpeaks

 

My #AutisticWishlist: Stop scaring parents & embrace acceptance, celebrate #neurodiversity & #AutisticPride

 

My #AutisticWishlist: Stop promoting therapies that hurt Autistic people.  Call out ABA for its abusive practices

 

Recognize that “awareness” hurts, we deserve acceptance and nothing less #AutisticWishlist

 

We need organizations that call out ableism & oppression, not ones that perpetuate those things! #AutisticWishlist

 

My #AutisticWishlist means economic justice for disabled people.  No segregated, sheltered worskhops!

 

I want organizations that claim to speak for me to fight for my full  civil rights, not against them! #AutisticWishlist #BoycottAutismSpeaks

 

I want advocacy orgs to fight for #communicationjustice & defend the rights & autonomy of nonspeaking Autistics! #AutisticWishlist

 

There can be nothing about us without us.  #Autistics  must be represented in leadership &  all levels of decision making! #AutisticWishlist

 

Organizations need to stop dividing & grading Autistics with useless and ableist functioning labels #AutisticWishlist #BoycottAutismSpeaks

 

Organizations need to affirm the value of Autistic lives & stop portraying our lives as tragedies #AutisticWishlist #BoycottAutismSpeaks

 

I want advocacy organizations to stop letting toxic parent support matter more than my dignity & humanity! #AutisticWishlist

 

I want advocacy organizations to tell parents about Autistic Culture & Pride, stop painting our existence as tragedy! #Autisticwishlist

 

I want advocacy organizations to fight for my full inclusion in schools, workplaces & communities! #AutisticWishlist #BoycottAutismSpeaks

 

I want advocacy organizations to fight for accessibility, universal design & to lead by example #AutisticWishlist #BoycottAutismSpeaks

 

Orgs need to show the world  our lives have value, stop telling people we are burdens to be pitied! #AutisticWishlist #BoycottAutismSpeaks

 

Organizations need to respect our humanity, not reduce us to “inspirational stories” to feel good about yourselves. #AutisticWishlist

 

I want advocacy orgs to respect disabled lives instead of framing our existence as burdens on our parents & communities #AutisticWishlist

 

I want advocacy orgs to stop telling our parents we need to be fixed & start telling them disabled lives are beautiful! #AutisticWishlist

 

Orgs need to stop telling parents it’s their child’s neurology at fault when they are having a hard time parenting! #AutisticWishlist

 

Advocacy orgs need to prioritize Autistic people as the true experts on their own lives! #boycottautismspeaks #AutisticWishlist

 

Autism Advocacy orgs need to follow the lead of @Autism_Women & @autselfadvocacy that are led by & for Autistic ppl #AutisticWishlist

 

Orgs need 2 stop saying they speak for & care about us when they’re really just parent support groups #AutisticWishlist #BoycottAutismSpeaks

 

Advocacy organizations must prioritize the rights & dignity of Autistic people over how parents, others feel about autism #AutisticWishlist

 

My #AutisticWishlist: Fight for #DisabilityJustice because the focus on “Awareness” does nothing to help Autistic ppl! #BoycottAutismSpeaks

 

My #AutisticWishlist: Recognize #intersectionality.  Don’t leave out the voices of those who are multiply marginalized! #BoycottAutismSpeaks
My #AutisticWishlist:  Presume competence & stop prioritizing spoken language over other forms of communication! All voices matter!

 

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    Blue/Green diagonally divided frame with green text that reads “Boycott Autism Speaks” In the middle of the text is a blue “unequal” sign.

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Inclusive Holiday Celebrations!

Tips to make holidays safe, inclusive, enjoyable and FUN for everyone.   

 

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Image: blue/white snowflake background. Red text reads: “Creating Fun, Accessible & Inclusive Holidays!”

 

Holidays are usually a time for big family gatherings, parties, and lots of extra sensory input.  While it can be fun, it can also be very stressful.  This is especially true for Autistic people.   

 

Most of the time, Autistic kids, adults and our families want to be included.   However, an invitation is NOT inclusion.   There are many things to consider if you want to create a space that is welcoming.  What is the sensory environment like?  Is your event chaotic and loud?  Is there a space to go to get a sensory break?  If you want to create an environment that is friendly and inclusive, the best people to ask about how to do that are the Autistic people that you want to celebrate with.   You can have a holiday that is fun for everyone and does not exclude anyone.  A lot of the time, it’s simply about what NOT to do.  

 

During the holidays, there is more noise, more crowds, more smells and lights.   This is not an enjoyable thing for most Autistic people.  

 

It’s important to remember that sometimes, we have to say “no” to invitations not because we don’t love you, but because we need to take time for self care, to have some downtime, or just to take a step back from the overwhelming sensory assault of the holiday season.   And that’s okay.   Do not try to make the Autistic person feel guilty for not wanting to join in an environment that is hostile to their neurology.   

 

When you decorate for the holidays, it’s important to remember that strobing, flashing or blinking lights can actually be deadly.   Up to 30% of Autistic people have co-occuring epilepsy.   Photosensitive epileptics also want to be included but  assaulting them with a potentially deadly weapon is the opposite of inclusion.   Steady, glowing lights are not only significantly less annoying than flashing lights, but 100% less likely to kill someone with photosensitive epilepsy.  Strobing/flashing lights can also be hard to handle for people with sensory/visual processing issues and those who are prone to migraines.   You can celebrate and decorate without hurting!

 

How else can you make your event/holiday party sensory friendly?

 

  • Have low light as opposed to bright or florescent lighting.
  • Tell your guests that flash photography is not allowed.
  • Low music instead of very loud music that makes it hard to hear or understand conversations.  In addition to this, some types of music can also cause seizures in people with epilepsy.  For more on that check out this or this.
  • Open spaces instead of everyone being crowded into one area.  It helps people with sensory aversions to touch, but it will also make ALL of your guests feel more comfortable.  Nobody likes being squeezed into a small space with a ton of other people.  Having an open area makes it easier for people with mobility impairments or who use a wheelchair to be able to navigate the space.   It’s also incredibly difficult to be able to process and understand a conversation when there are a dozen other conversations going on around you in close proximity.   For an Autistic person or someone with auditory processing difficulties, this can be a nightmare.
  • Ask people to be fragrance free.  For more information on what that means, check out this.
  • Create a small space where people can take a break from the party if they need to.  A quiet place away from the crowd to regroup.

 

During the holidays, we see family and friends who we may not spend a lot of time with during the rest of the year.  Please ASK FOR CONSENT before hugging or kissing or otherwise touching another person.  This is something that we need to especially remember when it comes to Autistic children, whose autonomy is very often disrespected by adults.   If you are the parent of an Autistic child, please be your child’s ally.  Do not force them to hug or kiss anyone if they do not want to.  Even if it’s grandparents or a beloved aunt or uncle…..  Even if the relative thinks your child is being “bratty” or “spoiled”.  Your child has a right to say “NO!”  And your child’s “NO!” should be respected by the people around them.   

 

Events, parties and family get togethers are one thing, but sometimes we need to also remember to scale back on the decorations and celebrations at home as well.   Parents often want to have the “perfect” holiday, but change and transition can be scary to an Autistic child.  Before decorating, think about putting things out a few at a time for your child to explore or get used to first.  If you celebrate Christmas, you can bring in the tree several days before you put on the ornaments.  Allow your child to familiarize themselves with decorations and take cues from them about how to proceed.   

 

Sometimes unwrapping presents can be very overwhelming.  Consider not wrapping them if it’s something your child doesn’t enjoy doing.  Or unwrapping one or two presents and taking lots of breaks before moving on to more.   Some Autistic children do not like surprises.  Allowing them to pick out their own gifts and then either wrapping them or presenting them can help alleviate anxiety about surprises and the unexpected.  

 

Reflect on the things that are difficult for the Autistic child when picking out gifts.  If a person is sensitive to auditory input, a really loud toy that moves around a lot is probably not a great option.  

 

When giving a gift, do not expect the Autistic child to keep saying “Thank You” or force them to do so. Remember that Autistic children often communicate  and react to new situations in unexpected ways.  For many Autistic people, even those who are speaking, speech is difficult in the best of circumstances.  Opening gifts and being bombarded with new information and sensory input is probably the absolute worst time and place to worry about manners.   You can take time later to send thank you cards or talk with them about their gifts.  

 

Always remember to stop and listen to your child, however they are communicating with you.  If they start to get overwhelmed, take a break and let them know that they can choose to celebrate the holidays in their way, in their time because they deserve to have fun too.   

PACLA at TASH 2015

Several members of the Parenting Autistic Children With Love & Acceptance team are attending the TASH 2015 Conference in Portland, OR.    We are presenting on collaborative advocacy in the autism community and how we use our platform to promote acceptance and social change!

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Image: PACLA poster on collaborative advocacy on a colorful carpet. In front of poster is round table with black tablecloth. Table has informational flyers and some awesome PACLA and Boycott Autism Speaks swag….including PACLA buttons and buttons for #CommunicationJustice in support of FC users

 

To see a PDF of the PACLA Poster, you can click the link below:

PACLA Poster Presentation: Collaborative Advocacy in the Autism Community: An Inclusive Framework For Social Change