Lauren Hooper, red-haired woman wearing a black cap. Subway car in background.

We Need More Awareness of Autism in Women


Ask anyone about autism and they’ll most likely describe the stereotype: difficulty socializing, a “lack of empathy,” specific and focused interests. But, as with everything, it’s so much more complex than that, especially for girls and women with autism. While there are various statistics on the ratio of boys to girls, it’s clear there are many more girls and women with autism than was originally thought. And because the diagnosis of autism has always been based on the male presentation of autism, it can be really difficult for girls and women to get diagnoses and support. I can’t speak to anyone else’s experience, but I can speak to mine.

I was a shy kid. I was so shy, and so anxious that I couldn’t be left at after-school clubs or activities. I was petrified and cried until my mum would take me home. I was constantly told I was too sensitive, that I took things too personally, that I needed to grow a thicker skin. And that really upset me – but then I was being too sensitive, wasn’t I?

These issues continued through my childhood and into my teenage years. I was always anxious and strived for perfection in everything. I was a vigilant rule follower; I couldn’t, and still can’t, break a rule for anything. I was terrified of turning in homework late, convinced it was an unforgivable act. The one time I did forget a piece of homework (because I’d taken it out of my bag to check I’d packed it and then forgotten it in a panic about being late – another constant anxiety), I cried in a corridor and my hands shook when I told my teacher. It was fine, of course, but it didn’t help my anxiety. I was so scared of doing something wrong, of getting into trouble.

In addition to that, I never felt like I quite fit in anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.

What had always just been a feeling of not coping started to take over other areas of my life. I’d always done well in school, despite missing more than 18 months when I struggled with an unidentified illness that caused debilitating fatigue. My lowest grade at GCSE was an A (although I was disappointed with not having achieved more A*s). I got to sixth form and everything changed. Suddenly every class, every test was a struggle. Learning and applying knowledge had always come easily to me, something I’d enjoyed, but all of a sudden, it had become so difficult and that was incredibly distressing. My anxiety got higher and higher and depression started to creep in. I was constantly exhausted and just getting through the day started to feel like an impossible task.

The turning point came when I failed an exam. I locked myself in a toilet stall and scratched at my arms over and over with a broken paper clip, desperate to feel anything other than this howling feeling of failure that came from somewhere deeper than I’d ever experienced. I don’t know how long I sat there and I don’t remember much of that day, but that was when my family and I started to realize something was really wrong.

A lot went into getting my diagnosis. I’ve lost count of all the doctors I’ve seen, the amount of times we left without any answers, the amount of books we read. I’ve been diagnosed with multiple mental health problems and tried a lot of different medications. I tried various therapies like CBT and EMDR. Nothing helped. But due to my mum’s never ending commitment, I ended up at the Brighton and Hove Neurobehavioural Service and after several hours answering questions, I walked out with a diagnosis of autism spectrum disorder. To start with, I was too exhausted by getting to that point to take it all in, but slowly, everything started to make sense. All these disconnected pieces of my life and my personality began to click into place.

I’ve always felt emotions strongly. If something goes well, I feel like I’m bulletproof. If something goes badly, I can end up in a meltdown: crying, shaking, screaming, and often self-harming. Either that, or I go into shutdown where I retreat to my room and lie in the dark, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days, or even weeks.

I’m extremely sensitive. To a lot of things. A change of plan, loud noises, bright lights, unfamiliar people and places, all of those things increase my anxiety, making it difficult for me to function, to make decisions, to interact with people or the environment around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded. Too much sensory information, too many demands placed on me, the closer I get to a meltdown. It’s a fragile existence, like walking on a tightrope.

I’ve never had trouble with empathy, with “stepping into another’s shoes.” Or more accurately, I’ve never found that difficult to do. My struggles tend to be with the other extreme: I’ve been told I’m too empathetic. I frequently experience other people’s emotions as if they’re mine and with such strength that I feel completely overwhelmed. It’s strange and upsetting to, for example, feel grief for someone I didn’t know. It can feel like I’m intruding even though all I ever want to do is help because I know how strong those emotions can be. It’s incredibly difficult for me to see someone upset and not be able to do anything.

It can also be very difficult to do something as simple as walk down the street. I feel overwhelmed by how big everyone’s lives are, how much makes up a person: memories, favorite colors, foods they hate, things they want to happen, things they don’t want to happen, phone numbers they’ve forgotten, songs stuck in their heads. I could go on forever. And when I’m surrounded by people, I feel all of that pressing in on me. It makes it hard to breathe.

Socializing is difficult. Again, processing all the information around me takes a lot of energy: a person’s words, body language, tone, how other people are reacting, everything going on in the background. It’s hard work. It feels like everyone else has a rulebook I never received and so I’ve had to learn how to be social. Where everyone else processes all this information automatically, I have to actively process it, which takes a lot of energy. So it’s not hard to imagine why I’m tired out very quickly by social situations. Of course many people don’t notice this and have no idea I’m autistic. Even the visible signs go unnoticed, like my difficulty with eye contact. Aside from the fact that I have no idea how long you’re supposed to hold eye contact for or which eye you’re supposed to look at, I also feel very vulnerable when someone is looking into my eyes, like they can tell what I’m thinking and feeling.

I do have my own specific interest: writing, in all forms, but my favorite is songwriting. I’ve read a bit about these focused interests and apparently the interests in the female presentation of autism tend to go under the radar because they can be similar to a neurotypical girl’s interests, like animals, TV shows, books, particular singers or music groups. It’s the intensity that’s different. I’ve never simply liked something; once I’m interested in something, nothing else matters.

When I’m writing, I lose all sense of time. I recently spent ten hours working on a particular piece and only stopped because I noticed my hands shaking. When I looked up, it was dark and I realized a whole day had passed and I hadn’t eaten. Writing, and writing songs, is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. It’s hard though, because there’s a big part of me that feels like my life isn’t worth living if I’m not doing that one thing, if I’m not doing songwriting. The music industry is tough as hell so it’s terrifying to think like that. But that’s the truth.

Of course there are other symptoms, and this is just one presentation of autism. As the specialist that diagnosed me said, we are the experts of our own autism. But, in my experience, it’s really hard. And it’s made harder when there’s so little understanding around the way autism affects girls and women. Life post-diagnosis is difficult, but at least I know what I’m struggling with. I’m learning what helps and what doesn’t. Not knowing was awful. I felt like I was drowning, like I couldn’t even find the surface. And the years of asking for help and being turned away made it worse.

The lack of awareness and understanding about how autism affects girls and women has real consequences. The time it takes to get a diagnosis and the repeated invalidation causes problems of their own. The people supporting me now think that that was part of the reason I developed borderline personality disorder, a mental health problem that involves instability of mood, behavior and self image. And I will never forget one particular doctor’s opinion, that maybe that’s just how life was going to be for me. That remains one of the most upsetting experiences of my life and years later, I’m still struggling to believe I will ever be happy.

I am so lucky to have found the people who are supporting me now, and I believe without them, there’s a very real chance I wouldn’t be here now. But there are so many people without this support. There needs to be more information, more awareness, more understanding of autism in women. Too often it goes unidentified, and the effects of that can be worse than the struggles caused by autism itself.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

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How My Autism Diagnosis Helped My World Make Sense


I’ve been having a difficult week. An emotional roller-coaster, if you will. On one hand, I am extremely happy I finally have answers. On the other hand, I’m an emotional wreck. I wish I would have known this as a child, so I would understand why I struggled with so many things that seem to come easy for everyone else. Why I would get made fun of all the time as a child and teenager. But now I understand why. I know why I am the way I am. I’m just going to come out and say it: I am Autistic. I have autism spectrum disorder.

Being diagnosed with autism has helped me understand myself better. It helped me understand that my brain just works differently. It helped me understand why I have trouble making friends and maintaining friendships. It helped me understand why I struggled with my hair. It helped me understand why I would “freak out” when my routine was disrupted. It helped me understand why I would hand-flap as a child. It’s why I would make unusual facial expressions. It’s why I would wander off all the time as a child.

But my autism is also the reason I love to research things. If I am interested in a subject, I love researching it inside and out, to the point that it’s a little weird. Haha. The same thing with birthdays. A person can tell me their birthday, and I remember it. Which can be a little creepy if they forgot I told them. It’s why I am very empathetic.

I found out when I was in college that I did get tested… when I was 3. I was diagnosed with static encephalopathy with global developmental delay. My parents were told I would never be able to take care of myself. That I would need to be put in an institution. My parents didn’t believe the doctors, and I never went back.

I proved the doctors wrong! I graduated high school with pretty decent grades. I got my bachelor’s degree and graduated magna cum laude. Every time I feel down about myself, I am reminded that I was told I would never get anywhere. That I could never do anything. That I would never amount to anything. That I could never take care of myself. Every day, I prove them wrong!

I know I can do anything I can set my mind to. Yes, I have limitations, and I can’t pretend they don’t exist. But since I received my autism diagnosis, I now have a therapy plan. I will be able to work with my limitations and make my place in the world.

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Why I'm Grateful for Starting My 'Late' Autism Diagnosis


When I first joined The Mighty’s contributor team, I did so knowing I have always been labelled “different.”

I also did so knowing I am in essence a walking ball of anxiety, and always have been.

What I did not know, however, is that I would pursue a diagnosis of autism for myself.

Yet that is exactly what happened in the last year. Like I said, I have always known I was different, my parents have too, and several others in my life have as well — whether it was the bullies when I was younger, or the teachers who arranged for me to stay in the library during break time even when others weren’t allowed to, just so I had somewhere quiet to go.

I know now that I have always been autistic too, not just “different,” and it did not develop; it’s always been there. I also know I always will be autistic.

It was so obvious to everyone, family and professionals alike, that looking back, I should have been diagnosed a lot sooner. Someone let me down at some point in that respect. One of my schools looked into a diagnosis, but never carried it out. So I had to do that myself with the help of my parents and GP last year.

It would have solved a lot of the problems I encountered between then and now had I been diagnosed sooner, but the important thing is that I know now.

Which brings me to where I am today.

Jacob's neurodiversity chart results.
Jacob’s neurodiversity chart results.

I am 18 years old and on a waiting list for my full adult diagnosis. Because of this, I’ve started talking about it much more, and writing about it more. I’ve even started a resource project for those on the spectrum to help teenagers and adults in my situation, and incorporated my autism and dyspraxia into my creative writing too. I feel much less “different” or “abnormal” and far more me. And even better, I’ve discovered a whole community of people just like me.

Not all my experiences are, or will be good ones.

I spent years with the majority of my teachers letting me be bullied because “Jacob’s different and doesn’t fit in.” I was expected to be “normal,” so I spent a long time praying into the void that I would be made “normal” so I could just not be targeted by people, or noticed. I wanted to hide away from being different.

However, it is important I now make this a positive experience, which is what I try to do as each day passes.

So yes, I am nearly an adult, I’m autistic, and I’m “different.” And I’m going to be honest — I’m proud. I’m different these days, because OK, I may be not so good at emotional understanding, at coordination, at social skills, at exams, at focusing, or functioning in the way the society I am in wants — but I am smart, I’m creative, and I know that when I’m in the right environment, or with people like me, the stars seems to line up perfectly.

I have hypersensitivity problems related to my autism, so this means I’m quite sheltered, but that affects nobody but me. I need that alone time just as my mother who has diabetes needs her insulin.

My counselor helps me to be proud of being myself. I am never going to hide being autistic, and I will never try to fit in ever again. It was like suppressing a whole part of myself, but now it is like flying free.

I do have a lot of processing issues, social difficulties and emotional understanding problems, but again, they are part of me. I also experience executive dysfunction at times. I have anxiety problems, which I’ve written about before. And I do not find it easy to communicate at all. But now I know, in part at least, why I have all of these things.

Life is generally just really hard to navigate, especially since I get fairly easily overstimulated, overwhelmed, and worst of all in my opinion, I get so very tired. I get meltdowns, shutdowns and panic attacks. The reason I decided to get diagnosed is because a member of staff witnessed a meltdown during a meeting at college. I even had a meltdown on my 18th birthday. But it is not the end of the world. My birthday was brilliant regardless.

My diagnosis has presented me with solutions too. Stim toys, ear defenders, learning support, and so on are all things I would not have if I hadn’t finally plucked up the courage to see my doctor for a referral.

To anyone out there who thinks they might be autistic — I encourage you to get a diagnosis and find some resources. In the long run, it will help. The help I am getting right now, and the help I will get in the near future, is something I would’ve loved to have much sooner had I known what a benefit it would be to my quality of life. I also thank my college’s learning support for encouraging me to see my doctor after the meltdown I had, and my best friend for constantly assuring me that I should be proud of being different.

I am no longer scared of stimming in public, or in class. I am no longer always wondering why I am different. And I now know it is never too late to find out why, or get the help you might need because you are different. I can spend time learning about myself, my special interests, and everything else the world has in store, instead of spending time worrying I don’t fit in. I tell people I’m an Aspie now. Which sounds far better than the word “different.”

In summary, the reason why I am grateful for my diagnosis is:

I can be me. I can be different. I can be proud of being autistic now that I know it is a central part of being me.

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Activate4Autism: Hear Our Spectrum of Voices

This Comic Artist Is Crushing Autism Stereotypes With a ‘Spectrum of Voices’


Rebecca Burgess released “Understanding the Spectrum” last year during Autism Acceptance Week and it went viral when autistic people, parents and teachers discovered her comic and felt it helped them explain the autism spectrum in a more accurate way.

Burgess was contacted by Geek Club Books to lend her talent to their #Activate4Autism movement with “Hear Our Spectrum of Voices,” the next generation of her comic to include other autistic  voices. She says:

“People are hugely misinformed, and to be able to build upon my first comic that breaks myths and stereotypes is so rewarding. It was so amazing to be able to incorporate the quotes from other autistic advocates. This will really help people have a deeper understanding about the autism experience.

I was so happy to be a part of #Activate4Autism and help to inform people about autism through comics! I hope others will contribute and share their own stories.”





Discover more and download a PDF of the comic at #Activate4Autism.

 

Actors, authors, artists and advocates activate their voices for autism.

8 Reasons Why Actors, Authors and Advocates Are Activating Their Voices for Autism


“Activate Your Voice for Autism” brings together voice actors who are in favorite video games, cartoons and animated films, stage actors who have appeared on Broadway and London stages, children’s authors, a comic artist, a fan con, and most importantly, autistic advocates. They’ve come together in unity to activate others to become more open and welcoming to people on the autism spectrum.

Here are 8 reasons why they say #Activate4Autism is so important:

1. Everyone deserves to be seen and heard.

“Everyone deserves to be seen and heard. Everyone deserves to be accepted. Everyone deserves to be loved.” Jared Gertner speaks up for anyone who feels different and unheard. He doesn’t want people on the autism spectrum to feel defined by their diagnosis. “I see you. I hear you. I accept you. And I love you.”

Christopher Gorham, Julian Feder, and John Asher from the movie “A Boy Called Po” agree. “Kids on the autism spectrum are just kids. No one should be afraid of them.”

2. People with autism have abilities and dreams too.

Chase Bailey is an advocate who hosts his own cooking show and authored the “Official Chase ‘N Yur Face Cookbook.” He inspires others on the spectrum and proves that sharing one’s abilities adds value to the world. Chase is working hard to make sure there are opportunities for everyone to “chase their dreams.”

3. People with autism are an integral part of society.

Becca Lory, CAS, BCCS believes that “people on the spectrum are an integral part of society and
should be treated that way.” She is advocating for a world that’s built on the strength of neurodiversity and making it a reality, one message at a time.

4. We need to shape a better place for those with autism.

Robert Watkins is changing workplace culture and encourages employers see the benefits in hiring autistic employees.  “We need to stand up for who we are and for how we are. We need to stand together to be stronger. We need to shape a better place for ourselves in this world.”

5. No one deserves to be bullied.

Known as “The Voice,” Dave Fennoy enjoys meeting his fans, many of whom are on the spectrum, at fan conventions across the country. He delights in their uniqueness and creativity. “We must activate our voices because no one deserves to be bullied.”

Andrew is a self-advocate from Happy Hands Toys and he couldn’t agree more. “People like me who have autism act differently. We shouldn’t be picked on because we’re different. I think we should be respected for who we are.”

6. Everyone deserves to be a part of a community, because we all belong.

“I believe that everyone deserves friends who accept them and mentors who believe in them,” says Lydia Wayman. “I activate my voice for autism to say that everyone deserves to be a part of a community because we all along.”

7. Our world is better with a spectrum of voices.

The team at the Universal Fan Con want to speak out for autism too. As the first Fan Con with “inclusion for all” in its mission statement. Co-founder Chauncey Robinson, said that “we stand in solidarity and take part in the counter narrative to a world story of ignorance and hate. It’s through our spectrum of voices where we can be examples of positivity, diversity and hope.”

8. We must speak out for acceptance and inclusion.

Television actress Kathy Kinney, children’s author Julia Finley Mosca for The Innovation Press, Walking Dead video game voice actor Brian Sommer boldly stepped forward (as did many others) to say that it’s no longer acceptable to marginalize autistic individuals — everyone must speak out for acceptance and inclusion for all.

Watch all the actors, authors, and advocate videos over at #Activate4Autism on Geek Club Books. We invite you to activate your voice too!

 

The Problem With How Hollywood Tries to 'Accurately' Portray Autistic Characters


Sometimes the news isn’t as straightforward as it’s made to seem. Elizabeth Cassidy, The Mighty’s News Intern, explains what to keep in mind if you see this topic or similar stories in your newsfeed. This is The Mighty Takeaway. 

A recent study published in Psychiatry Research showed that many portrayals of autism in Hollywood align “unrealistically well” with diagnostic criteria in the DSM-5, a manual doctors use to diagnose mental disorders and conditions. The study said:

The large majority of the characters evaluated obtained a very high score against DSM-5 criteria for ASD. Even the lowest scoring character scored at 50% of the possible total in both the social communication and restricted repetitive behaviour domains. This is in line with Garner et al. study (2015) on ASD-characters in film where they reported “very high levels” to “extreme levels” of autism related [characteristics]. This raises the question of whether meeting all diagnostic criteria (seven portrayals scored at the maximum possible, indicating that every characteristic used in diagnosis was apparent in that portrayal) can be described as “accurate.”

“The characters portrayed on screen might be better described as ‘archetypal’ in relation to diagnostic criteria,” the study’s authors wrote. “This could in itself lead to difficulty if people form a stereotypical view of persons with ASD.”

The autism spectrum is incredibly broad, but Hollywood’s portrayal is specific. By portraying a small section of the spectrum, Hollywood enforces stereotypes about autistic people.

“A single film or TV series cannot capture the richness and variety of experience that resides within the autism spectrum,” the study’s authors wrote. “Thus we conclude that for portrayals of ASD on screen to have true value in developing public understanding of the condition, a larger and more varied number of autistic characters need to be included in the cultural canon.”

Many shows have a character who is verbal, has an intense interest in a certain subject, and displays genius-like skills or traits mostly associated with savant syndrome.

According to the National Institute of Health, people with savant syndrome have exceptional ability in a certain skill like music or mathematics while also having an intellectual disability. It only affects about 10 percent of autistic individuals.

Dr. Shaun Murphy, an autistic character played by Freddie Highmore (who isn’t autistic) in “The Good Doctor,” has savant syndrome.

“Most people I’ve met who don’t have a personal connection to someone with autism think they’re all geniuses, and I believe that is largely due to how autism is portrayed in the media,” Hillary LaFever-Ceja, a member of The Mighty’s autism community, wrote on Facebook. “In reality, most autistic people can’t count cards or understand quantum physics, but they still deserve respect and support.”

The representation of economic status and demographics of the characters is also limited.

Characters tend to be middle- to upper-class white males. Yes, ASD is more likely to affect boys than girls, but it can affect all racial, ethnic and socioeconomic groups, according to the Centers for Disease Control.

A study published in Pediatrics, the official journal of the American Academy of Pediatrics, showed the increased costs associated with caring for a child on the spectrum. Additional costs for children on the spectrum surmounted to over $17,000 per year for services that included health care, school systems and related therapies.

It is unfair for Hollywood to mainly portray families who don’t seem to be struggling to pay for the added expenses, and characters who are primarily white males would have people believing autism doesn’t affect other races or females.

Hollywood should also hire autistic actors. Most portrayals are done by actors who are not on the spectrum or are considered “neurotypical.” Lack of diversity in casting is nothing new and has been a point brought up repeatedly in the disability community. Autistic actors would add authenticity to their roles and could consult with the writers to help with the accuracy of the portrayal.

While Robia Rashid, creator of the show “Atypical,” did talk to people on the spectrum, an autistic individual wasn’t on staff to read the scripts. They did employ an autism researcher and “expert,” but no matter how much of an expert someone is, nothing can equate to someone who is actually autistic. They’re the ones who live with ASD and truly know what it’s like. Shows like “Atypical” add a human element to a diagnosis that people might not otherwise encounter. Why not talk to the humans who live on the spectrum and can add an authentic human element to the storyline? Don’t get rid of the expert, just hire someone on the spectrum in addition.

David Shore, executive producer of “The Good Doctor,” said they consulted people on the spectrum for the show. But he also said the character is “not there to represent autism, he’s there to represent Dr. Shaun Murphy.” While each character will be unique, just like each person on the spectrum is unique, to say someone in the media who has autism doesn’t represent autism is wrong.

Media in itself is representation, and they should take into account how they are representing autism. As the study first mentioned said, representations of autism can lead to stereotypes. Since there aren’t a lot of shows out there portraying autism, each show that does is adding to people’s understanding of it.

While portraying autism has become more popular with shows like “The Good Doctor” and “Atypical,” Hollywood can do a better job of representing those on the spectrum, no matter how broad. Include more characters who are nonverbal and don’t have genius-like abilities, and hire autistic people for cast and crew.

Hollywood can start with adding characters to shows like “Atypical.” Just because a show has one main character on the spectrum doesn’t mean it has to be the only main character.

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