An Autistic Woman’s Battle with Ehlers-Danlos Syndrome

Once she became 25, Rosie Ashcraft felt more pain than ever before. An indie-pop singer who goes by the name Scarlit Rose was living her life making music and raising her two sons. Out of nowhere, she lost the stability in her spine and was desperate for answers. In her case, misdiagnosis nearly cost the lady her life. 

Co-occurring conditions are not uncommon for autistic people, such as gastrointestinal issues, epilepsy, or insomnia. But one condition that isn’t often talked about is Ehlers-Danlos Syndrome. The Ehlers-Danlos Society states that it is a condition “generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.” They also explain that there are 13 subtypes, including Classical EDS, Hypermobility Type EDS, and Cardiac-valvular EDS. Rose has Hypermobility Type EDS. 

When thinking of an autistic person, a white male often comes to mind thanks to shows like the Big Bang Theory and the Good Doctor. As a result, autistic women are often overlooked. According to the Autism Science Foundation, autistic boys outnumber girls by 3:1, but there is also a diagnostic gender bias; girls who meet the criteria are at a heightened risk of being undiagnosed or misdiagnosed.

Ashcraft explains how it feels to live with her skin perfectly. “Even though I wasn’t physically active, I would bruise easily, and I always found that to be strange,” she said. “It was sort of sensitive and reactive, and very soft and fragile. But at the same time, it was also quite resilient!”

She would be forced to physically exert herself in school to the point where she would shiver. Overexerting your tissues with EDS can cause the body to become cold, so Ashcraft would wear a large sweater and do her homework under a set of comforters. Although her father accused her of being lazy, her mother accommodated her and acknowledged that those were the conditions she needed to complete her work.

She credits her autistic nature with helping her survive the crippling condition. As autistic people are known for repetition, rituals such as hot showers, massaging and squeezing her stomach to push food down, and consuming coffee, water, and salt were all helpful in the beginning. However, it all proved ineffective at a certain point. 

“All of a sudden you’re 25 and you’re getting hit with this terrible neuro-spinal disease with nervous system dysfunction like dysautonomia, serious digestive disorders, pancreatic disorders, and even diabetes, tendinosis… immune system dysfunction,” Ashcraft said. “It’s exceedingly painful, and most EDS patients who are acknowledged that have these problems are on fairly heavy painkillers, ones you would give to cancer patients.”

Originally, Ashcraft was given a diagnosis of fibromyalgia by a rheumatologist in 2011. After meeting with a friend of hers who had EDS, as well as her daughter, they told her that her condition resembled Ehlers-Danlos much more than fibromyalgia. When she got home, she looked the disease up and found similarities to what she was feeling, but ultimately didn’t want to face it. Instead, she focused her energy on an autism diagnosis. 

In 2012, after a “grueling six weeks” of evaluations (which involved her having to look over footage from her childhood that was difficult to watch), Ashcraft was finally diagnosed as autistic. Around this time, she started her blog, A Girl Outside the Box, which gained a devoted following in the process. Once she acquired a diagnosis, she knew she wanted to do it.

“I wanted to correct assumptions, help abolish stereotypes and educate about what it’s actually like to be autistic,” she exclaimed. “I also took a particular interest in educating to clarify and assert a shift in paradigm regarding the female presentation. I received the brunt of discrimination and refusal to accept that I’m autistic because I am a woman. Being feminine, a fair bit fashionable, and creative apparently made me not autistic. My traits were unfairly compared to a male stereotype. People are often too focused on stereotypes rather than understanding how core traits can manifest in different ways for different people, different genders, and different personalities. There’s nothing more hurtful and frustrating than people absolutely refusing to accept you. Also, I do know some guys who have more feminine traits and presentation, and they also get denied similarly.”

The journey of autism advocacy came at a price: to numb the pain, Ashcraft became addicted to painkillers, notably Tylenol #3, which was a prescription version of the drug with codeine. “I became addicted to them and I felt guilty about it because in the past, I had self-medicated and I didn’t want to go back in that direction, but I didn’t know what else to do,” she said. “I wanted to live and move forward and do things.”

When trying to seek counseling for her addiction, she trusted the doctor and shared her recent autism diagnosis, as well as her suspicion of having EDS. Despite having an official diagnosis, the counselor denied that she could be autistic. Ashcraft was also a client of Community Living British Columbia (CLBC), which is an assisted living program for disabled people in Canada. Denying both conditions, this counselor tricked Ashcraft into seeing a psychiatrist that would send her life into a downward spiral: Dr. Kiri Simms. 

According to Ashcraft, Simms was pathologizing her while she was explaining herself. She mistook her animated expressions and communication style as a form of pathological lying, not believing anything she was telling her. Instead of empathizing with her, this doctor made her feel interrogated. 

The doctor had asked her what was going on with her body, and as Ashcraft told her, Simms was seemingly twisting the information to make her sound neurotic. Concerning her autism diagnosis, Simms tried to make her doubt the legitimacy of her diagnosis. 

As Ashcraft was coming off of the Tylenol #3 at the time, she was lacking a filter at the time because of the stress. She told the doctor, “I came in here to get help for my chronic pain and health issues. I didn’t come in here for you to reassess me and try to take my autism diagnosis away from me. Autism is different in girls. We present differently. You could read up on it.”

Being angered by her response, Simms successfully pulled more information from her, as Ashcraft told the doctor about her blog and advocacy. That info would later be used against Ashcraft, as Simms’s report falsely labeled her as having Factitious disorder, accusing the woman of faking her autism diagnosis for attention. This incident, and the report that accompanied it, sabotaged Ashcraft’s efforts of receiving the diagnosis of the disease that was eating away at her body for so long. 

Upon receiving the paper report two weeks later, she had a meltdown where she stepped out of her care aide’s car, screaming and crying. Her care aide, Amanda, tried to protect her by talking her out of reading the report, to no avail. However, the program manager of the care aides (who we’ll call Margaret), believed the false report over Ashcraft’s claims. The incident caused her to almost stop eating. In what seemed to be a refreshing upcoming event in her life, it only brought things from bad to worse. 

While rehearsing for a small local autism conference at the University of Victoria in April 2013, she broke down and cried on stage. Running out into the field of the university, her best friend, Philip, held her in his arms to comfort her. That was the point where she realized that she had to stand up and prove her reality. It wasn’t easy though, as it took her several weeks to recover from the incident while battling suicidal thoughts along the way. 

Later that year, Ashcraft had been invited to attend an autism conference in Edinburgh, Scotland as a host and nominee for the literary arts award. While a trip to Scotland may seem like a fun escape, that was not the case here. Upon arriving, the lead advocate of the conference (who we’ll call Layla) had scripts for the advocates to follow, which were not prepared. So Ashcraft and the others were forced to wing it, which is not something that’s easy for autistic people to do. As a result, there was a competitive atmosphere among the advocates, although the purpose was to unite autistics. There were some redeemable factors, though. Her friend Peter was by her side, as well as fans of her blog that traveled all the way to Edinburgh. According to her, Layla seemed unhappy with the amount of support she had. 

Ashcraft was nominated for two awards, but Layla handed them to people who never attended the event. Whether this was intentional or not is a mystery, but worth noting. To cope, she partied and had dinner with the friends who came to see her, which compensated for the mishap earlier that day. 

Her dinner the next day did not fare so well. She was feeling more tired than usual and her shivering got worse. Despite that, she tried to ignore it so she could enjoy her time with the fans who came to visit. “The right side of my body drooped and the room kind of spun,” she recalled. “I almost felt like I was about to let go of my bladder. I thought, ‘oh my God, I better not do that right here.’ Felt like I lost neurological control. It’s like playing a tape and then everything stops, going into slow motion and becoming warped.”

She then lost the ability to use a fork and knife. Next, no appetite. For someone who loves Scottish salmon, she couldn’t even eat that. However, a little saltwater was able to curb the effects momentarily. With Peter helping to escort her back to the hotel, a hot bath and potassium pills didn’t help. Limping and shaking downstairs, she sought help from the hotel paramedics, who called 999 (Scotland’s 911). Being taken to the hospital by ambulance, her heart rate was irregular and her blood was checked for an electrolyte deficiency. 

“There was a point that I thought, ‘oh my God, I’m going home in a box,’” she said. However, a sweet physician by the name of Dr. Heather arrived, who gently rubbed her back to tell her that her heart rate had normalized, but her electrolyte levels were off. She was also advised to rest for the remainder of her trip. 

Arriving back at the hotel, Ashcraft was told by her friend who traveled from Australia that Layla was telling people Ashcraft had been faking her sickness because she was “upset” that she didn’t receive the award earlier. Even with the hospital report in her hand, it didn’t sway Layla. 

As it was time to return home, her heart rate became erratic again once the plane took flight. Becoming cold and white as a ghost, the plane landed in England just in time to get her off safely, as it was meant to be a connecting flight. Ashcraft was then forced to stay in a hotel until she had definitive answers and a course of treatment for her disease. Staying in the Heathrow Lodge in West Drayton, she had to rely on her husband and friends to wire her money for the time that she would remain stranded. Other friends also started a GoFundMe page, which helped her quickly. She had another friend named Kirsty to stay with in Bournemouth, two hours from London (despite Layla threatening to disown her if she allowed Ashcraft to stay with her). Kirsty also attended the conference. Staying in England for five weeks, she was able to find Ashcraft a saving grace: an appointment with Dr. Alan Hakim MA FRCP in London. 

According to Ashcraft, he is one of the best doctors in the world. She contacted another friend and blog subscriber of hers named Adam and told him of her predicament. He was more than willing to help. Adam, as well as his mother Claire, picked Ashcraft up from the train station and took her to the appointment. Right away, the man had answers. He shook his head the entire time that Ashcraft was recounting her story to him.

“The way you have been treated is absolutely disgusting,” he told her. “Without a doubt, you have Ehlers-Danlos Syndrome, and you are severely affected.” On top of that, he wrote a damning report that the doctors back in Canada would help her and stop abusing her. He also wrote a letter instructing a safe flight plan, emphasizing that she would be on beta-blockers which wouldn’t cause tachycardia, or a fast heart rate, in the air. 

Two days later, with a supply of food, water, and compression stockings handy, Ashcraft was finally able to return home. If it wasn’t for Dr. Hakim and all her friends, Ashcraft could have died. She currently raises her two sons, who are also autistic, and occasionally makes music as Scarlit Rose. 

Of course, EDS will always be a battle for the rest of her life. Even after the appointment, doctors were hesitant to treat her. But Hakim’s report made the chance to mistreat her more difficult, as he is a doctor that is quite distinguished in the medical field. Even with all her struggles, Ashcraft keeps her chin up – and quite literally because the C1-C6 discs in her neck have become unstable. This is a more severe complication of EDS particularly if it is left untreated for too long, as was so in her case. 

In 2018, the unstable discs were officially confirmed by a neurosurgeon in Maryland who performed an upright MRI and rotational CT scan. It is a painful, debilitating, and potentially dangerous condition. Ashcraft was offered fusion surgery; however, it is far too much for her to afford. She remains unable to access the specialized neurosurgery in her own country and lives with an unstable spine using neck collars, fairly strong pain medicine, and a power wheelchair with neck support, to cope. Being discriminated against yet again due to EDS, no neurosurgeon in Canada, so far, is willing to undergo the training to operate on EDS patients’ spines. In spite, Ashcraft is determined to raise her sons into fine men and to advocate for autistic people like her. She also intends to write a book about her experience. After everything she has gone through, she lets nothing stand in her way. Such a person deserves one thing and one thing only: respect. 

Note: Rose is currently raising money for C spine instability treatment. If you would like to support and/or contribute, please visit her Fundly page.