Sunday, June 7, 2015

Diversity in Our Characters: An Adult Living with Autism with Benjamin Hall

Autism Awareness
Autism Awareness (Photo credit: Wikipedia)
Including people with various life challenges into your plotline makes your writing interesting, complex, and real. One of the mental and physical issues that confronts so many is autism. Today, I welcome Benjamin Hall to ThrillWriting to talk to us about this subject.

Fiona -
Hi Ben, can you give us a brief overview about what science is saying about autism, the autistic spectrum, and if you don't mind where you fit into that picture.

Ben -
Autism is a spectrum of neurological conditions. 
This means that someone can fit into it and be totally low-functioning or (in my case) be considered exceptionally high-functioning. 

Low-functioning usually means that one cannot function socially in pretty much anyway. 

My level of functioning means I appear as neurotypical but still have socialization problems. It also means that I had trouble learning to read and write. I needed help typing up projects in high school by means of dictation. 

Science has trouble diagnosing properly. Also, the media portrays it as a disease, which it is not. Vaccinations have nothing to do with Autism. Yet people like Jenny McCarthy still spout off about this as if it were fact.

Fiona - 
You have received a master's degree in media communications. Kudos. Can you talk about your work life? I'm wondering if you can tell me some of the obstacles to success, which are unique to someone with asperger's, that one might experience and what systems/plans/strategies you employ to deal with these issues.

Ben - 
Meltdowns due to sensory overload caused by too much stress are always a risk/obstacle. 

For me personally, there is the problem of feeling like my intellect will allow me to do certain things that I end up having a problem with doing. Thus, I still need to dictate at times. I get help from my mother (sounding board/advice) at times on non-confidential work.

There is also the problem of getting distracted and/or laser focusing on things at the wrong time. The main problem is that many people still don't understand Asperger's, including people who have it. This main problem also extends to the ability to get work outside of freelance editing and writing. I have often sabotaged job interviews without meaning to. Finally, there is the singular focus on my personal interest in comics. This meant in childhood/teens that I would often talk about comics and pop culture to the exclusion of other subjects. I have learned through therapy and speech therapy not to do this as much as I used to. Though each person with Autism and/or Aspergers is unique.

Fiona - 
As a neurological condition, people who fit along the autism spectrum experience issues with overload. Can you please explain to us this type of event and what should and should not be done to help?

Ben - 
The way to help is first properly getting a correct diagnosis, including any proper medication and physical/mental/speech therapy. This should be done as soon as you start to notice a child is not developing in the right way. Though some adults still need proper diagnosis due to not having been a pioneer age autistic like myself. 

Meltdowns (sensory overload) can occur due to pretty much anything. For some, it involves clothes on the body being too irritating. Sometimes it can be too much stress without time to process. Sadly, it is a case by case basis, and you can rarely visually spot a meltdown from the outside in my experience. Though by becoming more self-aware an Autistic can learn to see signs of one approaching. 

They are like the brain is on fire with a lightning storm of all the synapses firing all at once. Very painful! 

Wrong things to do include: 
  • Restraining someone during this time. At least most of the time. 
  • Calling the police and then the parents without informing either of the full situation. 
  • Touching. 
  • Bombarding them with questions. 
  • Following them to closely. 
To help:
  • Allowing someone time to process is one of the keys to helping. 
  • Asking what they feel they need. 
  • Giving them space. 
  • Not Touching! 
  • Time to calm down from crying or wanting to fight or flee. Just watch to make sure they are safe and are going to a safe location. Before they have a meltdown, they may ask for a break, so just give them a few minutes.


Fiona -
What kinds of ongoing therapy might help someone? Is this readily available with insurance?

Ben - 
I feel that Speech and Language pathology can help if the person is knowledgeable about Autism. Also Physical and Mental therapy can help depending on what needs to be learned. I have almost always had mental therapy to deal with my Autism/Anxiety&Depression/Aspergers/ADHD. It really just boils down to finding a knowledgeable therapist who actually can get on an individual's level.

Fiona - 
What do you want writers to know so that we write it right?

Ben - 
I want writers to read up on the subject not just from doctors and parents but those who have Autism/Aspergers. 

A good resource is the Orp Library which has graphic novels and books. Also the book The Reason I Jump, Temple Grandin bio-pic and Mozart and the Whale are good at showcasing some of the range visually. 

We do not all look or act the same so I would recommend looking on youtube accounts of those users who are diagnosed. There is a wealth of information so fact-checking is easy. 

The hard part is always going to be writing it intelligently and correctly. 
.
Fiona - 
It used to be that insurance would not pay for or recognize autism as a disorder. This meant that people with means received care and those who could not pay out of pocket did not. The reason I am making this point is that dependent on the socioeconomic background and age of the character,  insurance could have serious impact on the characters' present day abilities. Is this correct?

Ben - 
This is the insurance info my mom typed up and sent to me for the interview answer. Her name is Cate Hall and she works as an advocate for parents needing help with their kids who have Aspergers and Autism Spectrum. She helps at IEP [Individualised Educational Plan] meetings in Missouri Schools using what she learned from books and raising me:


Like everyone, people on the autism spectrum need healthcare. For most health issues, their insurance will look much like anyone else’s. The difference is in providing services that specifically target the autism needs. This requires a healthcare plan that will pay for specialist areas. Prior to the Affordable Healthcare Act, many adults with autism had difficulty obtaining services to help them in these areas. However, the “no pre-existing condition” requirement was removed from insurance plans and this opened up some doors for adults with autism.
Several states now have mandates in place to provide healthcare insurance coverage for children and adults on the autism spectrum. The following website should be very informative: http://www.asha.org/Advocacy/state/States-Specific-Autism-Mandates/

These states have recognized the need to provide services that support people with autism diagnoses. This includes services such as assessment and diagnosis, treatment with a psychiatrist and/or psychologist, speech/language therapy, occupational therapy, sensory integration therapy and Applied Behavior Analysis (ABA) therapy. However, states differ on which services and how much they will cover. This is especially true when trying to get coverage for ABA therapy.States With Specific Autism MandatesThe following states have specific autism mandates which require certain insurers to provide coverage for autism spectrum disorder.asha.org


Fiona - 
It is a tradition here at ThrillWriting to ask about your favorite scar. Do you have a story you'd like to share?

Ben -
I have many mental scars and a few physical scars/injuries, including a meltdown related spinal compound fracture, and a hand injury that consistently hurts. I was 16 at the time. Meltdowns are something that happens when people with Autism Spectrum Disorder/Aspergers have become overloaded with sensation(s). It feels like the intellect is in the back passenger seat of the mind, while said mind is in a painful electrical overload storm. I had and still have trouble with authority figures because of my Autism/Aspergers.

Fiona - 
Ben has shared the following links to help writers who are researching characters who are on the autistic spectrum:



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Thank you so much for stopping by. And thank you for your support. When you buy my books, you make it possible for me to continue to bring you helpful articles and keep ThrillWriting free and accessible to all.

Cheers,

5 comments:

  1.     Since I graduated High School in 1966 and College in (1977 BSEE) I've been seeking help. I've found none of it helpful. I only recently was told I had autism. Now it's too late.
        I'm writing a blog-novel about the end of world (isn't everyone?)
        It's a real challenge to write about social interactions from an abstract point-of-view. I try to read about how they should be done so my characters can do it, but I don't actually have any experience at that.
        I've been revising my novel recently in the ebook form, trying to add some body language. I have to base this on descriptions of it, because I hardly ever look up. When I do look up, the body language of the other person says, "How do I escape? Could you stop talking -- you're boring, can you get to the point. How is that relevant to what I just said?"
        I finished the print version. It's 512 pages and is awaiting approval to be posted on Amazon. In the meantime I'm revising an e-book version of it which I'm far from finishing. So it's the end of the world with cliff-hangers, and the main character is dead (maybe).
        I'm beginning to feel that none of the characters are realistic, not even the ones based on myself. Well, with a little science fiction, humor, satire, and poetic license, maybe it can work. But it's pretty much my last project in life. A cliff-hanger ending. But it's doubtful that there's any shelf under the cliff to be saved by.
        I enjoyed your "Weakest Lynx," and wrote a review. When I'm finished with some other books on goodreads which I'm trying to finish (I'm a very slow reader), I'll read you next book. Thanks. You have a lot of interesting hints about writing. I appreciate it.

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    1. Hey there,
      Thank you so much for sharing your perspective.

      Have you ever heard of "beta readers"? In case you haven't, a beta readers is someone who is willing to read your work and give you feedback. Every serious writer I know, NY Times and USA Today bestsellers even, use beta readers.Ask around for people who ENJOY your genre and read it a lot.

      You could task you beta readers to focus on interpersonal relationships and body language and give you feedback specific for the areas where you feel you need more help.

      Women, in general, are much finer tuned to the intricacies of non-verbal language. So male oriented aggressive action- based do or die books are a good fit for you.

      Also, there's a book that might be helpful, the Emotional Thesaurus: http://www.amazon.com/Emotion-Thesaurus-Writers-Character-Expression-ebook/dp/B00822WM2M/ref=sr_1_2?s=digital-text&ie=UTF8&qid=1453498097&sr=1-2&keywords=emotional+thesaurus

      You can think - "I bet he's panicking here" - look up that emotion, and they will list things that would show what your character is feeling.

      I hope this helps! And thank you for honoring me with your time, reading my book and leaving a review. I very much appreciate it.

      Cheers,
      Fiona

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    2. Thanks for your help. I downloaded The Emotional Thesaurus. It looks like it could be helpful. I'll see if I can use it in my next revision. I've heard of the beta readers; maybe I'll try it next time. I already finished and submitted my ebook -- added a little body language, and used a little bit of a description I got on the internet about what it feels like to get stabbed. Next time I guess I'll fix my sword fight using your article on that. Right now I'm just leaving what I have -- it might pass because it's a little bit comical(a banana cream pie as a defensive weapon). I'll see what happens.
          Thanks,
          Douglas Gilbert

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  2. Just wanted to add since I have an 18-year-old son with Aspergers. He was 'diagnosed' when he was four. Like Ben, I don't consider it a disease so much as who he is. It's made his life (and mine) difficult at times, but raising him was a fascinating journey and I have no doubt (most of the time) that he'll do well. That's a far cry from were I was a few years ago when I decided the best strategy for his future was that I had to live forever. Clearly, that was unworkable!

    I wanted to make two main points:

    First, it is a spectrum, so don't expect one human being with Aspergers to be just like another. You wouldn't expect your husband to be just like your neighbor's, would you?

    Second, sensory integration issues were probably my son's biggest challenge. The public school was so wonderful to work with in my town. (Probably thanks to my even-keel husband, more so than me.) They gave my son a desk in a quiet, dark corner of the resource room where he could go when he was feeling overwhelmed. They also allowed him to wear sunglasses in the classroom. They evidently cut down on the pulsating of the lights. And, they didn't hold him to the music requirements - there is nothing worse than elementary-level singing for a kid with sensory issues. What worked for my son may not work for everyone. You just have to try things to see what helps and enlist the aid of a willing support group like your child's teachers or your coworkers.

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