Wednesday, November 20, 2019

Harriet: A Neurodivergent Film Review

Source: Focus Features
[image: Poster for the movie Harriet. A glowing
orange-brown background features three Black people,
one man and two women, in 19th century clothing.
The woman in the center is wearing a wide-brimmed
hat and has an unapologetic expression. Below them
is a smaller photo of the center woman, in profile holding
up at pistol. All-caps white text below her reads, "Harriet"]
Maxfield Sparrow
unstrangemind.com

The movie Harriet (2019) is 125 minutes (two hours and five minutes) long.
www.focusfeatures.com/harriet

----

The first thing I noticed about the film Harriet was that the showing was sold out. I was eager to see the film and was simultaneously irritated and grateful that I couldn’t get a ticket. Irritated, because it meant buying a ticket for a later showing and finding a way to kill time for a couple of hours. Grateful because Harriet’s story is one everyone should know.

Harriet is the story of Harriet Tubman, the former slave who walked 100 miles to freedom all by herself when almost no one else took that journey alone. She went on to become the most celebrated Conductor for the Underground Railway, the clandestine project that united folks across race and gender lines with the focused goal of bringing captive slaves north into freedom. Tubman liberated 70 slaves, then went on to lead battles in the Civil War. She remains one of the very few women who have ever led a wartime charge for the United States military.

Harriet sustained a head injury as a young teenager that led to epilepsy and precognition. She “saw” her sisters being sold away from the plantation before it happened. In the film, she’s depicted having visions of both her own escape and her facilitation of others’ escapes. These visions, coupled with her strong faith in God, lent her the courage to become a great leader, like Moses, bringing her people out of slavery and home to the Promised Land.

I cannot review this film from the perspective of a Black person and I urge you to read other reviews that are written by Black people and other People of Color. But I would like to focus on the aspects of the film that affect neurodivergent people and people living with trauma-induced sensitivities.

No flashing lights, rapid jump cuts, or explosions


It would have been unpleasantly ironic had the film contained flashing lights or other seizurogenic visuals, considering Harriet’s own experience with epilepsy, but I have seen a documentary about cochlear implants that had no closed captioning so nothing would surprise me at this point. There were no jerky visuals or flashing lights in Harriet, though I cannot promise there are no seizurogenic sounds because I’m not familiar with all the sounds that can trigger seizures.

Overall, the sensory experience of Harriet was pleasant with nothing that triggered agitation or distress for me. I commented to a friend afterward that the movie felt a bit dated (in a good way) to me because other than the cinematography being more modern, Harriet might easily have been Roots. This is not to say that there weren’t any emotionally intense scenes, but I will cover that in another section.

From the perspective of sensory sensitivity, Harriet is gentle on the nervous system—one of the most sensorily gentle films I’ve seen in a long time. The downside of this, of course, is that it will be a hard film for those with higher sensory input needs to sit through. I did get up to use the bathroom and had an easy time returning to the film. I didn’t want to leave because the story was engrossing, but I’m pleased to report that easily distracted viewers should be able to follow the story well, whether they have to leave the room for a sensory break or whether their mind wanders at times while watching.

The audio at the theater where I watched Harriet was low-key and not painful (though you’ll want to bring ear defenders just in case since volume can vary from theater to theater). The speech was clear and not mixed with large amounts of music or sound effects, but if auditory processing is something you struggle with you’ll still want to try to find a showing with captions.

Face-blindness


I have prosopagnosia or face-blindness so I”m always worried about whether I will be able to follow a storyline or whether I will get lost in trying to figure out who characters are. While there are many minor characters and I often wasn’t sure who they were, the film did a great job of helping the viewer to keep track of the major characters.

In the beginning, when Harriet was known as Minty and was just part of large groups of slaves working in the fields. She was easy to keep track of because slaves had one outfit they wore all the time, so Harriet was easy to spot in her tan headcloth. Harriet’s husband, John, was easy to recognize in the beginning because he was connected with Harriet: hugging her, kissing her, holding her hand. Later in the film, John was easy to spot because his left eye became badly scarred.

Two of the Black actors had grey hair and were easy to spot: Harriet’s father had longer hair and a bushier beard and Reverend Green had short grey hair. These actors stood out and were easy to keep track of. Harriet’s friend and landlady, Marie, was easy to keep track of because she wore very fancy dresses, more ornate than any other character. Among the white characters, the main antagonist was the only person with shoulder-length blonde hair making him easy to spot. Harriet’s former master was not in the movie for long before dying and his widow was mostly easy to recognize because she was the only white woman the film spent much time with and most of the time she was with her son, the man with longer blonde hair.

I found that the film did a good job of letting me know who other characters were by either always showing them in the same place so they were easy to keep track of, or clearly identifying them at the beginning of scenes. I give Harriet a B+ for face-blindness accommodation.

Violence


For many traumatized and emotionally sensitive people, violence is a major factor in deciding whether to see a film or not. There was a significant amount of violence in the film, including one scene where I could hear others in the audience gasping. I will go into more detail shortly.

There was very minimal blood in the film—mostly things like the redness of an open wound with nothing dripping from it. Blood was kept unrealistically absent throughout. For those with em*tophobia, there was no r*tching or v*mit in the film, although there was one scene where a woman was so scared that afterwards it looked like she might have v*mited from fear and held her body in a position that suggested v*miting, but she did not actually cough or v*mit.

The N-word is used often, throughout the film. I did not keep count, but I would estimate about two dozen incidents of the N-word.

A man slapped a woman. A man injured another man’s face, damaging his eye. Many people were depicted with scars from whippings or burnings and there is a scene where former slaves describe their injuries at the hands of slaveowners, some showing their scars. A man was shot in the forehead and killed. A woman was beaten to death, including being stomped in the head when she lay on the ground (this was what made the audience gasp). While all these scenes of violence were heavilly sanitized as far as blood or seeing the impact on screen, they were all heavily emotionally charged and I am feeling emotional again as I write about them. Those who are sensitive to scenes of violence should be cautious.

On a scale of 0 to 10 as far as the graphic nature of the violence, putting horror films like Hostel or Saw at 10 and Disney’s Snow White and the Seven Dwarves at 1, I would rate Harriet as a 5 on the violence scale. The nature of the violence—knowing that it was a portrayal of actual violence that happened countless times to real human beings who were held in bondage for generations—was much more upsetting than the level of graphic depiction the director chose to portray. The emotional intensity of the violence, knowing it depicts something very real and horrific, makes the emotional violence of Harriet off the chart—far past 11.

Overall Impressions


The aspect of this film that will most likely be the hardest for neurodivergent viewers is the heavy emotional content. I felt like the director had an even hand, and did not pile on the emotional cues or pump up the sentiment, but Harriet is a story where that is unnecessary. If anything, the emotional content was downplayed as much as a director could while still telling the story.

Any honest story about slavery will be emotionally difficult to watch. Families are torn apart, people’s lives are completely controlled with no opportunity for personal choice, babies are taken away from mothers, human lives are discussed as if they were little more than cattle—perhaps less valuable than cattle, even. People are beaten and killed. Laws are passed to increase the level of criminality of simply existing, let alone being born into slavery.

Harriet is an important story and the director has done everything possible to make the story accessible to emotionally sensitive people, but it made me cry and I suspect many other viewers were shedding tears as well. Come prepared to feel deeply emotionally moved, and take care of yourself if that’s a triggering condition for you.

With these caveats in place, I highly recommend the film Harriet. I have known the basics of Harriet Tubman’s story since I was a small child, but still learned much about her life and her grave importance to U.S. History. Harriet is a moving film and a satisfying one. Finally, one of the most famous women of the Civil War Era has a film celebrating her life and accomplishments and we are all richer for the opportunity to watch it, reflect upon it and learn from it.

Thursday, November 7, 2019

Ehlers-Danlos Syndrome: An Autistic Autism Researcher's Insights

Dr. Emily Casanova 
[image: Black-and-white headshot of a white woman
with medium-dark, chin-length waved hair.]
Ehlers-Dahlos syndromes are disorders that affect connective tissues. It is both under-researched, and a common co-occurring condition in autistic people. We wanted to know more about how Ehlers-Danlos gets diagnosed (and overlooked) and the state of the research, so we spoke with autistic autism researcher Dr. Emily Casanova, who presented on this topic at INSAR 2019, the annual meeting of the International Society For Autism Research.

Thinking Person's Guide to Autism: First you can tell us a little bit about you and your work?

Dr. Casanova: My work has two major foci. The first centers around the relationship between Ehlers-Danlos Syndromes (EDS)/hypermobility spectrum disorders (HSD) and autism, trying to tease apart their shared biology so we can better define and understand precisely what these overlapping conditions are. The second branch of my work focuses on the genetics underlying autism. I am particularly interested in the evolutionary patterns of these genes and their functions within prenatal development across species. Many rare genetic variations that are associated with autism occur in developmental genes, which are extremely old and are highly conserved across most species.

TPGA: How is Ehlers-Danlos diagnosed?

Dr. Casanova: EDS and the closely related HSDs are diagnosed primarily through physical assessment and taking patient histories. Genetic testing is also an option, and is currently used to rule out other hereditary connective tissue disorders (HCTD). There are different types of EDS, with the most common form being hypermobile EDS (hEDS). This type of EDS, as well as the related HSDs, are diagnosed using the hEDS Criteria Checklist, which you can find on the Ehlers-Danlos Society website: ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

Generalized joint hypermobility (GJH) (as defined by a score of 5+ for adults under 50 on the Beighton scoring system) is considered a central feature of these diagnoses, as well as chronic musculoskeletal pain and/or instability (see Criteria 1 and 2c). Other features associated with HCTD, such as effects to the skin, the heart, and the skeleton are also observed (Criterion 2a).
Finally, the clinician will note whether any 1st degree family members also meet criteria for hEDS.

These criteria were published in 2017 and are much stricter than previous iterations. The broad HSD category is also a new diagnostic entity that subsumes people with previous diagnoses of Joint Hypermobility Syndrome (JHS) or localized/historical features of hypermobility who have features of musculoskeletal pain/instability but don’t meet full hEDS criteria. Some individuals with a previous diagnosis of hEDS prior to the 2017 criteria change may also now fall under the HSD umbrella.

Although EDS was once considered a rare condition, occurring in about 1:2,500-5,000 people, most clinicians believe that the hEDS type is common, although prevalence estimates are not yet available in part due to the recency of changes in diagnostic criteria.

TPGA: Do you have a sense of how many subtypes of EDS are there, including related conditions like Hypermobility Spectrum Disorder?

Dr. Casanova: Currently, there are 13 recognized types of EDS, although that will probably continue to expand with time and further research. With the exception of hEDS, most forms of EDS have gene associated mutations and are believed to be rare conditions. (“Rare” is typically defined as occurring in no more than 1 in 2,000-3,000 people.) hEDS on the other hand is likely a common condition and there are currently no identified mutations associated with it (although that will probably change in coming years due to ongoing genetics studies).

HSDs are even more common than hEDS. Previous research suggests that generalized HSD (G-HSD), which are people who have GJH and musculoskeletal pain/instability but don’t meet Criteria 2a or 2b in the hEDS Checklist, occur in approximately 2% of the general population. Meanwhile, GJH occurs in about 20% of the population. It’s currently uncertain how many people have what is known as localized hypermobility, which is hypermobility in 1-4 joints but who don’t meet criteria for generalized hypermobility.

TPGA: What are some typical and atypical traits of EDS that people should look out for?

Dr. Casanova: The typical traits of hEDS are GJH, chronic issues with musculoskeletal pain and/or instability, and usually other effects to the connective tissue like soft mildly pliable skin, easy bruising, abdominal hernias, Marfan-like (“Marfanoid”) features such as long arms or fingers, and some mild heart malformations like mitral valve prolapse.

While these are currently considered the core characteristics of EDS/HSD, because connective tissue is in almost all parts of the body, it sometimes seems that there are few symptoms that can’t occur in association with these conditions. So rather than try to list them all here, I highly recommend following the blog, Oh TWIST!, by Jan Groh, which has an incredible wealth of information on EDS/HSD and related conditions: ohtwist.com.

TPGA: Does anyone have good statistics on the percentage of autistic people who also have Ehlers-Danlos?

Dr. Casanova: Unfortunately, there are few studies on this topic. One Swedish study back in 2016 estimated that approximately 3% of those with EDS in Sweden also have an autism diagnosis. However, because hEDS/HSD is predominantly diagnosed in women and autism is notoriously underdiagnosed in females, those are probably underestimates of co-occurrence. I personally suspect we may see as much as 10% overlap, but we are in desperate need of more research to determine whether this is the case.

TPGA: What advice do you have for people who suspect they have EDS but can't get a diagnosis? (Besides venting on #DoctorsAreDickheads.) Why is it so hard to get a diagnosis for so many people?

Dr. Casanova: Circumstances are complicated. Many doctors are either unaware, untrained, or—worse—misinformed about what EDS/HSD is and how it presents. If a genetics center is available and taking referrals, that is often the best place to seek an assessment. Geneticists are usually very experienced in identifying and measuring physical malformations (e.g., hypermobility), as well as offering genetics services for those interested. However, any EDS-experienced clinician should be capable of performing an assessment.

Some genetics centers have unfortunately stopped accepting referrals for hEDS/HSD for two primary reasons: 1) because hEDS/HSD are common conditions (in contrast to the usual rare conditions that most geneticists see), these centers are being overrun with referrals, spreading resources thin; 2) because we have yet to identify rare mutations consistently in this population, geneticists often feel like there’s not much they can do, aside from perform a physical assessment and take a history.

Unfortunately, there are also those instances in which age-old prejudices that center around female-dominated conditions like EDS/HSD also play a role, leading to dismissal of patients’ concerns or, worse still, outright patient abuse. For a population that comes into frequent contact with the medical establishment due to complex ongoing physical problems, sadly there are few patients who have not experienced these unfortunate and painful events, leading to higher rates of medically-induced posttraumatic stress disorder (PTSD) in this population. Finding a supportive physician is therefore of paramount importance for those with EDS/HSD.

TPGA: What about BAPpy folks (Broad Autism Phenotype with a sub-clinical set of autistic traits)? Do they have a tendency towards EDS as well, as yet another one of those shared traits?

Dr. Casanova: There do seem to be a lot of BAP folks on the EDS/HSD spectrum. I’m not sure how often BAP individuals present with EDS/HSD symptoms, but I’d assume a portion of them do. We’re hoping in future to at least get an estimate of the frequency of BAP in EDS/HSD.

TPGA: Are you aware of any approaches like diet or exercise that can help improve the quality of life for people with EDS?

Dr. Casanova: A good book on physical therapy and exercise specifically for those with EDS/HSD is Living Life to the Fullest with Ehlers-Danlos Syndrome. Diet also can be a tricky issue for many with EDS/HSD because, with comorbid mast cell activation syndrome (MCAS), there’s considerable variability in how individuals react to different foods. Some people try a low histamine diet, others do a trial by error diet. For those who can handle it without GI side effects, I’m personally a firm believer in consumption of amino acids, such as things like bone broth.

Since in hEDS/HSD we seem to experience chronic inflammation and probably rapid turnover of connective tissues, it’s a good idea to supplement the diet so that the body has ample supply for repair. Antioxidants are also probably another helpful supplement, although be cautious about overdosing, but they are also important for cell repair. But most importantly, if the individual is experiencing gastrointestinal problems, an elimination diet may be helpful to determine if any particular food products are triggering reactions. However, not all GI issues are solely the result of an immune reaction but may be due to autonomic disorders associated with EDS/HSD, especially in the case of constipation and gastroparesis (slow emptying of the stomach), etc.

TPGA: Any other advice you'd want to give people who have EDS, from a personal or research perspective?

Dr. Casanova: If you have a current diagnosis of hEDS (based on the 2017 criteria), I highly recommend trying to enroll in the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study, which is a genetics study aiming to identify rare genetic variations that may occur in some people with hEDS. I’m not personally involved in this study, but the importance of this can’t be underestimated as this will help us better understand the biology(ies) of this common complex condition, how it may overlap with other hereditary connective tissue disorders, and hopefully how to better treat it and improve the quality of life for those on the hEDS spectrum.