Taking Middle Grounds

To those who are living with or closely know someone on the spectrum, Autism Awareness month is no stranger.   Family members, professionals and business alike often strive to make a venue more autism or sensory-friends.  Others strive to raise awareness in our major media sources.  For example, on Netflix, one can find the popular show, Atypical about a teenage boy named Sam who is just transitioning into an adult and going onto college.  Others raise awareness through the work of puppets such as Julia who is a character on Sesame Street, who’s played by Stacey Gordon, a puppeteer who has a son with autism.    On the other side of the coin, are self-advocates, who are autistic that believe in autism acceptance.   From their perspective, we should do away autism awareness.    They believe that awareness often gives people the wrong impression of us.   Alongside, they often boycott Autism Speaks the organization believed in curing autism.   Along with a strong loathing of the organization, they also hate the puzzle piece for the symbol’s negative history that autism is a disease.   Rather, they use the infinity symbol to represent neurodiversity.   They also do not wear blue but red, as a color of “Love.”   Whatever the case maybe, I take a very different stance in all of this which entails taking middle-grounds.  

My on National Autism Awareness Day

Yes, while I am an autistic and a self-advocate, I have developed a very different mindset than a lot of my peers on the spectrum.    I am more willing to take middle grounds.  What that means is that I prefer to take elements from both sides.  Why?  Well, it’s simple, really.  Foremost we can’t have autism acceptance without autism awareness.    Perhaps the most important of all is that those on the spectrum need to have a level of self-awareness and understanding of themselves.   Once they have learned how to become more self-aware, then can become to accept themselves.   For example, there was a time in my life I hated being autistic because I grew up in a world with people looked at me like I was broken and therefore underestimated what I could or could not do.   In contrast, I was strong enough to want a normal life. I wanted to hold down a job beyond custodial work because I knew something had to exist.   I only learned how to accept myself in 2004, based upon joining a support group for adults on the spectrum.   At that, a mechanical engineer and a pilot named Robert Morris who also carried a diagnosis ran the group.   Contrary to another support group, which felt more like a daycare for adults, this group focused more on gifts, talents, and careers. Here, they spoke out against closed minded views related to autism. They further celebrated Temple Grandin before her movie came out.  While this group helped me begin my journey in self-discovery but also in self-acceptance. Despite that, I am don’t want to get too far down the beaten track.    Once a person learns these things about themselves, they can learn how to better serve in their community.  

With the Red Instead versus Autism speaks, this is where I feel it’s appropriate for a self-advocate to take middle grounds.   When I mean here is yes, standing up for what’s right should be number 1.   For example, learning to educate or sometimes re-educate people in the community on what autism is and what it is not.   Some people believe that autism is an anti-social personality disorder and that we are all sadistic monsters who go off for no reason.   Following the Sandy Hook Shooting, which took place on December 14, 2012, I was watching a live stream from my computer which contained a chat session.  During the stream, the leader talked about this shooting which I was thrilled with.  Sadly though, another member of the chat room jumped into the conversation and stated ignorant stereotypes about it.  While this makes my blood boil, she blurted out that Adam Lanza had Asperger’s Syndrome and all that all people with Asperger’s syndrome have a lack of empathy who go off for no reason.  Little did she know that an adult in her early 30s was closely watching her comments and could call her out on in her ignorance.   When I responded, she boasted about how she was in autism research and knew better because she listened to experts.  “That’s doesn’t make you an expert,” I came back.   In a similar hasty manner, people with little education on autism lean towards the disabilities associated with autism while forgetting that a person with autism can be still a person.   Therefore, one on the spectrum can raise autism awareness for the sake of educational purposes while explaining the reason behind Lanza’s shootings and perhaps explaining where the disability lies. 

Third and finally, I have taken middle grounds because I have elected to support Autism Speaks.  One of the main reasons is because I see them working hard to become more autism-friendly.  Though not perfect, something like this never takes overnight.   For example, I have seen then create a special blog designed for adults on the spectrum. In fact, I submitted a few articles.  One of which included getting involved in airport rehearsal tours.  I have also seen them feature more stories by the voices of autistics themselves and become more and more diversified.   Otherwise, most self-advocates want to reach out to as many parents, guardians and other people in the community who support autism speaks.   Most of the time, these parents or guardians often lost as what I should do with their children as there are so many voices giving them confusing answers.   I feel that they need to hear from the real experts and that’s us.   Our life experiences is what will raise awareness and acceptance.  Not only that we know best what types of services an individual needs and how expensive something can be.   Again, that where a self-advocate can come in and get involved with their local autism speaks chapter.   They can also start a team or sign up to raise money and walk while learning to keep track of how Autism Speaks spends their money.  Last but not least,  they may consider getting on boards and advisory councils part of Autism Speaks because that’s ours. Someone will hear voices. 

You can make a donation here.

Therefore, I would highly like to recommend that self-advocate learn how your differences side aside with people who support autism speaks and take middle grounds.  As a result, I am not lighting it up blue to walking in red.  Rather, I am combining the two colors together to make purple. My campaign logos are “Taking Middle Ground” and “Walk in Purple.”  In fact, will walk on the 28th of April in the greater Atlanta area and wearing a T-shirt that not only promotes my campaign but also my blogging brand. 

Visiting Nashville TN for the Future Horizon’s Autism Conference

Temple and I at a FH conference in 2014 held in Atlanta

On Thursday, November the 29th, I will be boarding a flight that is bound for Nashville, Tennesee.  During my stay,  I will spend much of the afternoon and evening studying, dining and sleeping in my hotel.  The following morning, I will grab myself a large breakfast before hopping on the hotel’s shuttle which will drop me off at the Nashville Airport Marriott.  It is at this site that Future horizons will hold it’s autism conference where I will blog about the event and the speakers.

 

I am particularly looking forward to attending this event is that two out of three speakers are women next to being on the spectrum like myself.   What is more is that one of them happens to be Temple Grandin, who I have been acquainted with for quite some time. One of the main reasons is because her latest talks included information about how an adult with autism can learn to drive.  Being that I am 37 and have never learned, I feel it’s never too late.  So I am hoping to inquire with her second reason I catch up with Temple is that I have a friend who is currently unemployed and is facing some levels of discouragement at the moment.   I would like to put her on the phone with him because she is very encouraging and I believing she would give him some helpful advice.   Say, getting a work portfolio work samples that my friend can present when seeking a new job. All the while hoping to provide tips when he gets discouraged.   Ultimately, Temple and I are both very quirky women on the spectrum who believe in getting things done.   I look forward to seeing another go-getter like myself who believes in others on the spectrum.  

Not only that, I look forward to meeting Anita Lesko, who the second woman on the spectrum who will be presenting.   At the present, Lesko and I have not only had the chance to hear her speak live in an interview on World Autism Awareness Day.  I also had a chance to read her book “The Stories I Tell My Friends,” which is exclusively about Temple herself.  I am also inspired by her own amazing adventures including her all autistic wedding and her adventures flying on a fighter jet next to sharing some of the same struggles that I face daily.   As those of you who are my followers recall,  I read and reviewed that book.   So am I excited to finally be able to meet Anita.   

Following both of their talks, I look to get my copy of “The Stories I Tell My Friends” and hopefully at the same time.  Apart from getting the book signed, I hope to pose in a photo together with Temple and Anita.  Particularly as a way of saying “Thank you” for allowing me to read and review their book.

 

 

At long last,  I will have the chance to meet Dr. Jim Ball, who is specialized in ABA.    One of the reasons to listen to him is because of the some of the work that I am currently becoming more familiar with all this.   As I don’t know much about Applied Behavior Analysis, one would argue that it would sensible to get my feet wet.  This is especially since so many adults with autism are protesting the use of ABA versus other therapies such as floor time. 

While I impassioned about the conference,  there are two more days.  During that time, I have to remind myself that things need to be done now and then.  Between work, finals to study for and a flight to catch, there is a lot to be done.  

At this time,  you may wish to look at the link which contains information on the conference. 

https://www.fhautism.com/about-our-autism-conferences/autism-conference-with-temple-grandin-in-nashville-tn-november-30-2018/

Blogging for Future Horizons

Blog networkSince late 2013, I have been running a blog series called “Hello World with Miyah,” which originally began on Youtube after being encouraged by a cameraman who interviewed me in 2007 for a charity benefit.  He felt that I was so outspoken, extremely straightforward, and that my voice needed to be said to other people in the autism community. During the first year of vlogging I faced unemployment and attempted to take a real estate course, which I had a great distaste for. Still, I pushed myself to build the brand “Hello World with Miyah Sundermeyer”  by recording myself using an iPod touch. Topics contained everything from daily life as an autistic person to relevant information on autism for the general public.  Other topics included things that I am passionate about, like Dragon Con and the classic and very popular animated series My Little Pony: Friendship is Magic. At this point, I had no desire to write any blogs.

Future Horizon's
Grandin and I at the Asperger’s Conference in Atlanta, November 12, 2014

It was only in 2014, after meeting Dr. Temple Grandin, that I learned about creating a portfolio and selling my work to get a job that could turn into a career involving writing. I knew that I was a skilled writer and wanted to sell my skills by writing blogs related to autism. In 2016, I officially opened an account with WordPress.  I had no clue what I was going to write about but I did know that I was on my way to writing my introduction to my blogs.  However, when I have invited a special event entitled  “Wings for Autism,”  known as airport rehearsal tours, I perked up. Based on what I had seen, I elected to write my first official blog on what I felt needed to be done and how I would like to be involved in the airport tours.  I also decided that I wanted my blogs to offer scholarly advice which held some practical applications that families, professionals, and other advocates could use to take seriously. So far, most of these blogs have lots of cited information and other resources in addition to my own writing that I felt my reader could find helpful.

However, how where does Future Horizons come in, and what does that have to do with blogging?   It all began in November 2014, when I had two opportunities to meet and hear Dr. Grandin, and I gave her my business card. It was at this time that I first met Teresa Corey, the liaison of FH, and her assistant, Brad Masala.  Like with Grandin, I managed to give business cards to  both. I had started at the Center for Leadership in Disability (CLD) and was doing things related to autism resources for individuals on the spectrum and their families in order for them to get better access to services,  while sitting on a planning committee for the first statewide autism conference in Georgia. These experiences gave me an opportunity to bring many ideas to the table.  One of those included having FH attend out conference a vendor and sell their books and other resources that could be essential to families, professionals, and individuals with autism.  However, I would only have to wait for our 4th annual autism conference for that dream to actually come true, which finally took place back in May.

 

When that day did finally arrive, I had a chance to purchase The Stories I Tell My Friends, Temple Talks, and a few magnets while networking with Amy from Future Horizons.  I told her that I was a blogger and had just gotten a press pass to blog about Temple Grandin in Chicago.  Amy recommended that since I am a blogger, I should consider blogging for them by doing two things:

  1. Read and review books which have been published by Future Horizons prior to being released in the market.
  2. Attend their conference and blog about them.

Though I would like to keep blogging about scholarly and practical applications related to autism, I realize that this opportunity will not only help me build up my portfolio but also sell my work and learn how to build my skills in lots of ways, especially in writing.

Why Support Autism Speaks?

(Cover Photo: Autism Walk 2016)

Within the last decade, the organization, otherwise known as, “Autism Speaks” has sought to “Cure Autism.”  In return,  a large portion of individuals living on the autistic spectrum have pushed back and joined the “Autistic Self-Advocacy Network(ASAN).  Numberless autistics have come away with the feeling that Autism Speaks looks at the autistic population as broken and diseased.  Reacting, huge masses of self-advocates have protested events such as walks, posters and even turn having nothing to do with the color blue.   Others have formed the organization, “Red Instead” which is working to provide alternatives to ABA and other popular therapies.  While I agree that we can’t cure autism and find a way to make a person fit into the norms of society,   there are other reasons why I support such an organization.

 

Why Autism Speaks
Pictured: Temple Grandin and me at one of her keynotes in Atlanta: Facebook Profile Autism Speaks Frame

First, being that I am a leader in the autistic community right here in Georgia, I feel that the logical thing to would be to work with everyone.   Yes, I may disagree with the “Cure Autism” attitude and clash with the current vaccination theories,  but I cannot simply avoid running into opportunities related to autism and not avoid this organization altogether.   By the same token, I feel that it’s my job to educate professionals who work for autism speaks that autism isn’t a disease and that we have to push for acceptance and inclusion among communities worldwide.    Despite my actions in proceedings to help, Autism Speaks, I realize that not every professional and family will adopt my philosophy.   Rather, I recognized that this educating will not change people’s minds overnight.  Still, I can give a push by laying the groundwork that these professionals and families may greatly benefit from later.

A second reason why I support Autism Speaks is due to the high volume of families members and people in local communities who are currently very heavily involved with them.  Being that I am a leader, having a series of blogs and working for Georgia State University,  I feel that getting to know the families and various organization individually is key.   For example, there might be a family who is looking to get their child diagnosed and might not know where to go for help.  Others might want to know about airport rehearsals and how they can sign up to take a tour and spread the word to other families.  Say, to support groups designed for parents and guardians.   By the same token, Autism Speaks offers a guest blog WordPress series called, “In Our Own Words” which bloggers on the spectrum can promote themselves.  Although some autistics would look at this as a form of “Tokenism,” I see the opportunity as the “Glass half full.”   In my case, I find that this opportunity will only open up doors for me to get the word out about my blogs.

 

(Pictured above: Delta Flight Crew from “Taking Flight Program” works with Autism Speaks to raise acceptance at airports and planes.

 

A third reason why I support is through the organization is not perfect, I have seen a ray of hope.  Rather than seeing, “Cure Autism” I have witnessed a gradual change in their views on autism.   For instance, in their new page, “Share Your Story Mosaic,”   the message says, “Help Increase Understanding and Acceptance of People with Autism,” which went live on April 1, 2018.  Specifically, self-advocates, family members and people in the community can share 500 character stories and photos relating to their own personal stories.   What’s more is that each individual can share videos on youtube. In responding, I sent three photos and two videos from my youtube channel series, “Hello World with Miyah.”    Being that I am fighting for inclusion and acceptance, another self-advocate felt that I needed to share my story with autism speaks.

A fourth and final reason for supporting Autism Speaks is attending the walks and for a very different motivation. In this case, I attend those walk to serve a different purpose. The first being is that I have no problem participating in a walk for autism particularly due to the feeling that the walk could raise money for essential programs like grants so that families can get things like evaluations and other services.  Other funds could be raised to fund programs like the airport rehearsal tours so that my desires can be put into motion.  A second reason why I wish to attend is that these walks often lack the knowledge of sensory research and have overstimulating events like concerts and other sudden noises such as popping balloons that can set off a panic attack.   Rather, I feel that the walk should be in a park with silver balloons and a silent concert where attendees would listen to recorded music by supporting artists.  During the interval, autistics could either walk with their family or go to a designated sensory friendly area with weighted blankets and other touch-friendly items.  Finally, the walks could have their booths and vendors set up while the atmosphere is quiet and relaxing.

 

Though I have gotten resistance from other autistics, I realize that I cannot please everyone despite their views on the organization and anyone who supports them.  While I could join in and join the boycott, I feel that it’s better to work with the organization as a whole to find a healthy solution that everyone can adopt.

 

Links below:

Autism Speaks Mosaic

http://autismmosaic.org/?key=M3228656-1