|Photo: Steven Depolo (Flickr) |
[image: Two smiling African-American girls, on a swing set.]
How can we better recognize our girls who may be autistic? How can we make their lives easier? We spoke with five women of various ages, diagnosis ages, and nationalities about their experiences growing up -- diagnosed or not -- and what they’d like other people to know.
- Emily Paige Ballou is an autistic theater professional and writer based in New York. She was diagnosed with Asperger’s syndrome as a young adult.
- Olley Edwards is an autistic British writer and filmmaker, and parent to a neurodivergent family of three girls. She was (finally) formally diagnosed with autism herself only recently.
- Patricia George is an autistic Canadian writer, photographer, and artist. She was diagnosed with autism in her early 40s after a lifetime of being misdiagnosed with other conditions.
- Christine Langager is a writer, homeschooler, volunteer with an autism service dog organization, and a retired athlete. She is also an adult-diagnosed autistic parent to two autistic boys, and spouse to a U.S. Marine. She lives in Southern California.
- Siobhan Travers (Nez Perce) is an autistic writer, advocate, teacher, parent to an autistic daughter, and was diagnosed with autism herself as a child. She splits her time between Lapwai, Idaho and Northern California. Though considered “minimally verbal,” she speaks five languages.
OLLEY: Many autistic girls (and males) may present with a more stereotypically "female" social pattern: they are very social, even overpoweringly so. This can actually be an extreme attempt to replicate what they perceive as "normal " relationships. Clinicians need to look deeper not at the level of social life, but at the quality of it. Is this the genuine self, or are they playing a role?
The vulnerability being underestimated is a vast problem in self care and safeguarding, if you are Autistic it does not matter how capable you may seem, you will be vulnerable.
PATRICIA: That we exist at all!
Our sense of justice and fairness gets seen as just being stubborn or "mouthy." Our need for things to be fair and even can make for intensely rigid thinking. It can get us into bad situations for which we don't have the skills to get out of. Also, our perceived "maturity" is likely due to working so hard to blend in -- but we are not as mature as it might appear.
SIOBHAN: I think the most overlooked trait might be that it is assumed girls are more socially competent than they are. Also any academic difficulties are not as obvious.
CHRISTINE: I think that one of the biggest things that has been missed for the entirety of my life has been what I call "the chameleon effect." I was raised, as many women are, to blend in. To be a lady. To not make waves. The result of that has been a fairly well-honed skill set of changing myself to the social situation to blend in, and to (attempt to) be like the others present.
"But you make eye contact!" Ugh. Yes. Yes I do. It's not without a tremendous amount of effort, it was hammered into me as a child, and it's incredibly uncomfortable. Most autistic women I've met seem to have more eye contact frequency than that of autistic males. I think that might go hand-in-hand with the societal pressure for women to fit in, and not rock any boats.
I've had to tell many people if they took a trip inside my brain, they'd see my autism full-force, and not question my diagnosis again. Rigidity to rules was dismissed as, "playing mommy," or "being a good girl."
EMILY: Exposure anxiety. Not being able to process or to act under scrutiny. We need mental and physical privacy. We may need time and space to figure things out for ourselves -- that others don't take it for granted we need, or are entitled to.
A lot of "shyness" or noncompliance or reticence to try things -- particularly while we're being graded or judged on them -- is that we know that we don’t know what we need to know. We know when our abilities don't match the demands being placed on us.
And a lot of forms of attention that a parent or teacher might presume are positive, can be torment. (I have avoided doing things conspicuously in order to avoid being praised for them.)
Emotional sensitivity: we can feel a lot more than we might be able to tell you about, identify, or explain. And more than it might look like we do.
We can also look very emotionally vulnerable or volatile. Little things can mean a lot to us. Sensory issues can have emotional effects. This can be very confusing and hard when paired with Alexithymia, which is the inability to identify or verbalize emotions, or to distinguish between emotions and physical sensations. A girl could be going through a lot and not know any way to tell or show it to you. Just because she behaves well and gets good grades doesn't mean she's not having trouble. Quiet girls may be sublimating a lot.
Fairness is often extremely important to us. We can tell the difference between when life just isn't fair, and when adults are making life unfair. That's a lot of what erodes our trust in adults and authority figures.
Compare and contrast: What sucks more, in your opinion: being misdiagnosed or being undiagnosed ?
CHRISTINE: I was only ever diagnosed with anxiety (which I do have), and depression (which I don’t have). It was more difficult having to do my own research, and advocate, and fight for professionals to acknowledge, and take me seriously. Constantly doubting yourself, your gut, and your capable research, while questioning your sanity takes a toll on one's confidence, and trust in yourself. Ah, the sweet relief when you're finally validated, though.
Being undiagnosed (and unaware) is its own mess of suck. It was a constant barrage of wondering why I didn’t fit in, why relationships were so difficult for me, why I felt so profoundly different, and wondering how to fix myself to be more normal without knowing where I’d even start. Self-diagnosing, and later formal diagnosis has kicked off a process of self-acceptance, understanding, and allowing myself grace, which I had generally previously denied myself.
PATRICIA: I've been both so let me think about this.
Misdiagnosis left me vulnerable to the protocols and biases and stigma of, in my case, manic depression/bipolar. So there was no real chance to see that I wasn't bipolar because that's the world I got sucked into.
Undiagnosed I would have been able to explore for myself. But I felt tied to the diagnosis I had and even though my heart knew it wasn't right, my rigid thinking made me cling to it for far too long. So for me, I would have preferred the undiagnosed path. But I got to my autism diagnosis eventually.
SIOBHAN: Both suck equally. If you are misdiagnosed you may have to deal with the added stigma of a mental illness that you don't even have. You are also possibly medicated for problems that you don't need. There is a chance of being treated for a co-occuring issue without getting supports.
If you are undiagnosed you have to deal with the pain of not knowing why you are different from everyone else and why you don't seem to know the unwritten rules of being a teen girl (or a young woman).
There is the additional complication that while Native American culture has always understood and accepted its autistic members, girls included, it is difficult for people of color, girls especially, to get formal diagnoses. Our (Nez Perce) view on autism as a tribe is that it is simply how some people are. And why try to force a fantastic bead worker to go hunt bears?
EMILY: It's hard to say that one sucks more. They suck differently.
One means not being believed about anything, and the other means being told that the source of all of your problems is something that it isn't, which can lead you down a lot of dead ends in trying to make things better. Having no help vs. having "help" that's actively counterproductive or wrong foisted on you.
Accepting treatment for something that isn’t wrong can be really alienating and even worsen your mental state of being. I can barely even talk about being in Cognitive Behavioral Therapy, it was so damaging.
OLLEY: I'd say both on equal parts the non diagnosis means you can't access the support you need , the misdiagnosis means you are accessing support /medications you don't need.
Also, as autistic females often adapt to the role they need to be to fit in, they may indirectly "chameleon" into the traits of the "disorder" they have been misdiagnosed with, making their autism that much harder to be seen in a clinical setting when/if the chance arises. Actually I retract what I said about them being both awful on equal parts -- a misdiagnosis is much harder than a missed diagnosis.
What, in your experience, are some of the most dangerous situations autistic girls can get into, that both they and non-autistic people don't always recognize?
SIOBHAN: Dangerous situations for young autistic women ... many. If she is a woman of color she has a high risk of being murdered or "accidentally" shot by law enforcement. High chance of not understanding a situation where she is being manipulated for sex, rape, marriage fraud, scams that put her life in danger.
CHRISTINE: Any sort of situation where there wouldn't be a responsible and educated person who would advocate for them.
OLLEY: If you struggle to keep up with other people's agendas, needs, wants, or expectations and rely on your own thought process you are easy prey to those who do not mean you well. Abuse then is often hard to report, as you struggle to understand how to report/seek help -- or in fact that asking for help has advantageous consequences. Theory of mind, or understanding that others do not see the world as you do, should be taught in every school where autistic children attend. It is as unjust as Braille or Sign Language not being taught to those who need it.
EMILY: I think one of the biggest dangers to autistic girls is being trained out of trusting our own sense of danger.
PATRICIA: Oh, this is a painful one to answer because it comes with so much unfortunate experience. We are naïve and have a huge sense of fairness and justice -- this is a terrible combination. I've also noticed, and from my own experience, that because I have trouble relating to peers I spend time with people much older or younger than I am. This can lead to very abusive situations where the power dynamic is just too uneven -- we can't usually see that though. Too trusting. We take people at face value.
I've found that our sense of social justice can get us into a lot of trouble. When I am focused on "this is right and that is wrong," I can't always see the possible dangers that lie ahead.
When we are young and building scripts we just don't have the experiences to draw on to protect ourselves as we need to. So while my family recognized I wanted to make the world right and supported my advocacy, not knowing I was autistic left me open to being arrested in situations I just should not have been in.
We may seem far more mature than we are. The often bullying and sexual, emotional, physical abuse and trauma that comes with being an autistic child leads to places like sex work and drug addiction. With barely any services in places for neurotypical people, the ones in places just do not serve us. I approach issues like sex for example, very differently that my neurotypical counterparts.
My literalness once known, is easily exploited. Especially when you're younger. In grade five another kid asked me to pull my shirt up in the middle of class. I did. I got in a lot of trouble. The other kid, did not. I was supposed to "know better" but here's the thing -- if you don't, then you don't. So we are punished which leads to more confusion and internalized hate.
How could parents or teachers or friends have made your life easier when you were growing up?
PATRICIA: Believing me, and allowing me to set boundaries and respect the boundaries. They could have believed me when I said, “I can't,” “I don't know,” or “I can't understand.” Just accepting my limitations would have made such a difference. I spent so much time trying and failing to do things in ways others wanted -- but when I was allowed to try differently, or did it in a way that worked for me, it could be accomplished. Maybe not their way, but mine. My way is valid also.
SIOBHAN: Some ways teachers, parents peers could have done to make things easier? Understand that the struggles are REAL. That a student really doesn’t understand and isn’t just being lazy. That no, the social rules really don’t make sense and maybe people actually DON’T know what they did wrong.
CHRISTINE: It would have been amazing for me if anyone had recognized the signs, and addressed them, instead of writing them off as, “shy, quiet, nerdy, loner.” Being taken aside, and having potential social encounters discussed, and expected responses, or social stories would have been a game changer for me. Not so much that it would have changed me at all, but it would have greatly enhanced my toolkit, so perhaps I would have understood more of the extremely complicated dynamics that were going on around me, and be able to put more energy into other things, besides being confused and frustrated.
Another thing that would have helped is support in understanding that the world is not black and white. I was raised to see things as good versus bad, with no room for gray area. As a result, I was very rigid (and quite frankly obnoxious, as I reflect on this) about rules, and sticking to the rules. Be they social situations, rules of conduct at school, or instructions, I was sticking to the rules and demanding those around me stick to them as well. It did not make me a popular person!
EMILY: Believe us when we say that we can’t do something, or it’s too hard. There is no standard deadline for being able to do everything our non-autistic peers can. We don’t have to be able to do all the same things at the same time as everyone else, in order to succeed as adults.
It can’t be our job to make everyone else comfortable or happy. It can’t be our job to mediate between parents and other authority figures. Don’t put us in no-win situations. Back us up when we advocate for ourselves.
Don’t lie to us or mislead us about social things. We aren’t just like everyone else; don’t tell us we are. Things don’t work for us just like they do for everyone else; don’t pretend that they do. Other kids do realize we’re different; don’t pretend they don’t. When we feel left out or disliked or mistreated, don’t tell us that that just can’t be true. It very much can.
Asking for help is something that’s already hard for us; don’t set a precedent that we won’t be believed or trusted when we do it.
OLLEY: Looking back at my teens in the early 1990s, there was so little awareness of, or support for, autistic girls that I really could not have expected any help at all. (Things are thankfully much different now.) When I saw a psychologist at age fourteen, I was told I was "lazy" because I liked to stay alone for a long time, was acting "oddly," and refused to attend school.
Lack of professional understanding had traumatic consequences for me, as a teen. I was moved to different schools, was pregnant at age fifteen, and got in very unsafe relationships with older people. Teachers remarked how I went from a straight A student to a tearaway in my first year of secondary school -- but it was because I just couldn’t cope.
I was a loud rebel who constantly tried to make people laugh and was often picked on, except I didn’t actually realise at the time I was being mocked; I thought it was just being part of the gang.
My parents did the best they could; I owe them so much. I am so happy that things have worked out as well as they have for me and my family, and even more happy to dedicate a huge chunk of my life to ensuring other young girls don’t repeat my experiences.
Who are good role models for autistic girls (in real life, or characters), in your opinion? Especially for girls who aren't diagnosed or labeled, and need to know about someone like them?
SIOBHAN: Good role models: IRL other autistic women. It seems like many of us are around, and we are in most fields.
|Dana Scully of The X-Files|
[image: Young professionally dressed white woman
with chin-length red hair.]
Sadly, I come up short when I try to think of real-life women who have been role models for me as an autistic person. Partly because I felt so disconnected from other girls and women growing up, most of my own role models have been men, and most still are. And I don’t think it’s because there aren’t autistic and neurodivergent women living amazing lives, but because we’ve been denied the language and the opportunity to know each other in so many ways -- because autistic people are so marginalized and badly understood, and because the work of women has been so historically undervalued.
CHRISTINE: Aside from the ladies I’ve been introduced to post-"Bingo"? Amythest Schaber, Temple Grandin, Amy Farrah Fowler of The Big Bang Theory. This question is tough, as I am newer on this journey.
OLLEY: Fictional characters seem to be too few and too far between, however I quite love the 1980s Darryl
|Darryl Hannah in the movie Splash|
[image: White woman with long blonde hair, underwater.]
PATRICIA: The Danish/Swedish series The Bridge (Bron/Broen) has a lead female who is an autistic detective. I started watching it not long after I was diagnosed four years ago, and I found the portrayal very realistic and relatable.
And this may sound silly -- but Alice from Alice in Wonderland. As a young undiagnosed autistic girl, I related to her so much. I could write an entire book about Alice and me and Autism and self-acceptance. To this day “down the rabbit hole” is a script of mine. I often try and relate my experiences through that story to others. How nothing is as it seems. My body is too big! Now too small! Everything seems so strange! I'm now envisioning writing a book called “Alice and Me.”
And because I am over 45, I must mention Temple [Grandin]. Because for many autistic people, she is a role model -- or at the very least a bridge between the worlds.
What do you consider some of the best resources for autistic girls, and their families?
EMILY: Autism Women’s Network (I am a moderator for the Facebook page and am project coordinating a forthcoming anthology with them) is something I see becoming a really great community that talks about a comprehensive range of issues affecting autistic girls and women. But in a lot of ways, there’s just no substitute for having a friend close by who’s really on the same wavelength as you. The best thing is when being around another person is just effortless.
PATRICIA: I follow Amythest Schaber on YouTube -- they're great! And Maxfield Sparrow (formerly Sparrow Rose Jones) of Unstrange Mind is a treasure . I've gotten a lot from Judy Endow and Samantha Craft. I also hand this link out to girls who come to me: http://everydayaspergers.com/2012/03/31/day-62-females-with-aspergers-syndrome-nonofficial-checklist/
There is a serious lack of resources especially for autistic girls/women. I'm aiming to become a resource. Mostly that's how it's been for me -- seeking out my peers and asking a lot of questions.
CHRISTINE: This is an area where I’m still working on building my resource pool. I learned a lot from Bill Nason’s Autism Discussion Page after my son was first diagnosed. The cover photo reads “Helping your child feel, ‘safe, accepted, and competent,’” and it was the first source I found in the boatloads of standard “new diagnosis recommendations and advice” influx of information that felt right to me. His approach and teachings about Autism felt like a breath of fresh air after mostly only finding readings about cures -- it was the first time my gut felt at ease in reading Autism literature.
Shortly thereafter, I found Thinking Person’s Guide to Autism, and felt another wave of relief, and validation that I was not alone in my very new perception and understanding of Autism. Next was Ask an Autistic by Amythest Schaber.
Recently, after my ignorant, oblivious, and disastrous first attempt at writing, I was mercifully given a life raft by some amazing Autistic women and advocates, from whom I’ve been soaking up tons of information.
SIOBHAN: I have yet to find good resources for girls specifically. Thinking Persons Guide is good, as are blogs written by autistic women.
OLLEY: My favorites personally for my daughters and myself are the website Thinking persons guide to Autism, anything Sarah Hendrix writes too!
Of course without a shadow of doubt the world class professionals at the Lorna Wing Centre in Bromley, UK. Dr. Judith Gould and her team who are always two steps ahead in anything they practice.
I quite like my book Why Aren’t Normal People Normal, too (insert winky face here) -- it’s more of a friendly letter /short phone call from someone who is in same boat.
What extra (or continuing) supports do you think are important for autistic girls as they become adult women, in terms of setting them up to become successful (by their own definitions)?
CHRISTINE: Personally, I think I would have benefited from extensive education on social situations. Not just etiquette and manners, but actual potential real life social situations and relationship dynamics. I don’t think it would have changed me at all, but I do think it would have really bolstered my life toolkit to be able to reference those lessons, and be able to better understand what was going on in the situation beyond the surface of the interactions. I function very analytically, and the more pieces I have that make up the whole, the more I feel empowered, and capable of participating and engaging.
SIOBHAN: We still need access to training and independent living skills. We need social groups geared towards fun activities, so we don’t isolate. We need assistance dealing with medical and housing situations. We need real therapy.
I would also have benefited from opportunities to meet other spectrumites like myself. Having the opportunity to participate in a concrete experience that allows me to see that I am not alone -- that there are others I can identify with, and who identify with me -- has been profoundly helpful since my adult diagnosis. It has allowed for a lot of self-discovery, understanding, and a sense of connectedness to the world that I have not often felt.
Finally, a life advocate of sorts would be invaluable. Sure, I can do higher level math, and science, but I struggle seriously with the executive functioning skills required to plan for daily meals, or home upkeep that doesn’t leave me scrambling at the last minute, or overwhelmed and spinning my wheels when I set out to accomplish something.
EMILY: I wish there were easy to access support for things like bureaucracy -- and paperwork-navigating, appointment-making, coordinating medical care, applying for benefits, etc., for people who don’t necessarily need full-time or intensive support but for whom a fairly small amount of support could really help them keep their lives together.
PATRICIA: I'd like to see supports that would bring us more into each other’s lives so we can learn from each other. For instance – I am almost 47 and in a deeply transitional time with hormones as I enter menopause. Though peers my age are some help, I'm quite lost in knowing what to expect as my autistic body changes. It's not the same for us. I've reached out to dozens and dozens of women my age and while there are some commonalities – I need the support of other Spectrum women experiencing this.
Also for issues like what to do when long-term romantic relationships end. Again, there is overlap with the non-autistic experience, but I feel that autistic women’s process is a lot different. So the supports I need to be successful by my own definition are things like access to affordable housing, health care that focuses as much on the mental as the physical, and education. A support system that recognizes we don't all have the same needs. I need supports that are more typical to my brain wiring. So that I can find more accurate reflections of myself there. It's so empowering to find a positive reflections of self -- so those supports would lead to great success, for me.
OLLEY: Support is always needed, because autism doesn’t go away -- it’s a life-long condition.
I’d say the most vital requirement is a safe person, maybe a parent/sister/old friend? Someone who can be a sort of social guide, help you assess relationships/work/motherhood from a differing perspective, and give you honest advice if you need it. (Thanks to my mum for being this person.)
An abridged version of this interview was originally posted at BlogHer.com.