From the Autistic WindowRead Now
June 30th, 2020, Ty Lynn Salis
As I write. Its just a little cold for me. Not to much smell though, so I am not being bombarded with eu de whatever. I am sore in my chair. No shoes, dear God please no foot prisons for me. Have to tell hubby to quit talking because I want to write. Do I need loud music to drown out the words so I can focus? I am going to yell and scream now. I want to be able to think about the words on the screen so I can help people understand this. Who and what do I experience as an autistic woman? And that is such a tricky determination that I just wonder about it.
I am an American Southern Woman. Definitely a woman physically. Many a time I have been told I am not lady like at all. I speak up and say things. Almost as if I don’t want to place my filter. It took me many years to use contractions and walk normally.
So, how did I get here? Well lets check the biographical information and see what we have. I was born 7 weeks early and my mother had partial Placenta Previa the whole time. I also was working with intrauterine growth restriction. Because of the placenta previa, I could not grow as I should have. 2 pounds and 4 ounces. That’s the same size as a 26 week baby, and I was born at 33 weeks. I had constant apnea and needed little jolts all the time at first to remember to breathe. I still have sleep apnea. I never grew to catch up to my fellows. I am 5 feet tall (154 cm due to a fraction of an inch extra) and that’s all I’ll ever get. I was always a little behind. Particularly in motor control, sensory seeking behaviors (though not labelled as such in 1981) and socially. I had a brain scan in 1981 when I was 4 years old and it showed problems. Not structural, but in the patterns of transfer through it. I got an diagnosis of ADHD in 1981 because autism and Apergers were not available for children who could talk and learn back then. I was always an outcast in school, always a teacher favorite yet annoyance at the same time. Never could achieve anything that didn’t come instantaneously to me. And in later years, if I knew more than my teachers, I would correct them, in front of the class. At 42, I know that was not the smartest move, but bad facts and incorrect figures enraged me. I had obsessions through the years. Topics I studied to death, figuratively speaking. Figurative speaking is still a challenge when others use it, but I have learned how to use it, somewhat.
I had obsessions with GI Joe and transformers. I was obsessed with Rainbow Brite and Strawberry Shortcake. Then I discovered dinosaurs. Later on within dinosaurs, I discovered Human evolution and Geology. Those are two topics I still stroll back to regularly today. 35 years later. I wanted to be a Geologist from the age of 11. But mathematics is a huge weakness for me so it never happened.
I made it through most of college, though when I lost my way, I failed out. I have never got back on track to anything real. I probably never will. I do not like writing formal papers where I have to do footnotes, in line citations, etc. I hate stopping my train of thought to switch to another task of getting those notes etc.
For the next 20 years or so I went through a series of abusive relationships. As I am, I am very forgiving of peoples difficulties, but it lets people take advantage of me. I’ve been cheated on, infected with STIs while faithful, drugged, abused, raped multiple times, and almost murdered by strangulation. All this by people who claimed to love me. I always forgave the boundary violations because I couldn’t see where to have those boundaries. The old illusion that there shouldn’t be boundaries or secrets between a couple harmed me greatly. Everyone assumed I should know. Everyone assumed it was instinctive. I was 36 before I learned crossing my arms over my chest meant I was closed off. I did it to give my arms a place to be and sometimes to cover my hypertrophic chest.
I was 30 years old when I found out I had Asperger’s syndrome. That was still a diagnosis in 2008. It explained SO MUCH. My innocent nature, my sensory issues with food, so many things. It was a relief in a way. I could explain when people said I was too weird, too off, too much that I was me. I could explain why somethings were not the perfect vision of femininity while I had strove for that my whole life, yet failed.
I turned to the web for more information. I voraciously devoured blogs, videos, articles, and what books I could find on the diagnosis and its associations in psychology. I was obsessed for years.
I am going to have to lotion my lower legs and feet. The skin is starting to feel all not stretchy and not flexible.
Back to the tale now. I was obsessed with understanding the problems of how my mind worked. For awhile. Once I had a better understanding of ME, of how my mind processed everything, I came up with a fantastic description.
I do not think in audio. No inner monologue rules me. I see my mind like a 1940s aircraft hangar. There are tons of books shelves lined with books of memories, facts, trivia, and information. There is a large seating area for resting. I have a huge screen on one wall that has imagery and words that are what I am thinking. There is a stereo with music. In another section is a huge stack of servers and an access computer where I access all my thoughts and information. To describe this, I see myself at that server typing everything a fraction of a second before I type on the real computer so I can see sort of how its going to look on the paper. On the ceiling of this brain room, are RULES. All the rules for every social situation is posted in huge print across the ceiling. If someone says something political that I can not stand, I say or do “X” almost in a flow chart like pattern. But its written in a list with a list of lists and a cross reference list so I can extrapolate.
Social rules are SO confusing. I mean, how do you automatically know what to do in a situation? How do you know the proper response? You can not use a genuine response in 90% of situations because what’s real and what’s allowable are totally opposite. Social rules are social lies people use to manipulate each other. Its almost as of being normal in the social world is to be a liar. I hate lying. You have to keep track of it. I hate lying because it means you are not telling the facts. And add feelings into the mix and the whole world gets to the point where its time to implode or explode. I hate it. I avoid a lot of socializing with people outside the Autistic community. Most of my close friends are autistic or subclinical. Subclinical meaning they are autistic but their functionality in society is so efficient they can’t get a diagnosis because they don’t meet some ephemeral standard that means they are expected to function fully with no difference.
I prefer autistics. Honesty, real information, understanding of energy limits for social masks, total understanding of sensory limits, and the jokes are so good. Oh, did that surprise anyone? Autistics can be very funny, very sarcastic very allegorical, when they want to be. It can be off to others though so we generally don’t reveal it since it doesn’t fit the social lies and social standards artificially imposed by a society that does not allow for the real person to be exposed. We are literal as it gets a lot of the time when its serious. Try to say the grass is blue and I will argue to death its green because guess what, I looked and its green (or brown, or yellow depending on weather or season).
Am I bitter, perhaps a little. This world is not built for us. There is no help or support for us unless we are nonverbal or totally nonfunctional and when that happens, the autonomy is removed. Frequently, when the word Autism is applied, suddenly the outer world assumes you are always the one who is wrong in any situation. Your death means less when your murdered because you were “difficult to deal with” or because you refused to bow down and be someone else. Maybe its because certain textures or flavors, sounds or tastes grate on your nerves like cheese on a cheese grater until you explode or implode.
I do have sensory issues. A lot of them really. When I walk into a store, the smell sets my whole mode. I hate lavender. Stop using it world. Its cloying, really. I can not eat jello, oranges, or pineapples. When my teeth come down, it just makes me want to gag. But I love the juices or drinks made from them. I can’t eat the fat from the outside of meat. If meat looks even a touch pink, its not going in my mouth, I’d rather starve to death. Bodily sensations totally disrupt me. Pain, its nothing (and I have chronic pain to a degree) but itch, and its all over. Or thirsty. Can not do thirsty for even a minute or two without having my functionality and focus out the window. I hate shoes and socks… I can’t stand them. I will wear sandals and flip flops until its below freezing to avoid containing my feet that way.
I have several of the medical and psychological issues common with people on the spectrum. I have the digestive issues. Food sensitivities that are a pain to work around. Every single medicine I take for any of the issues just makes the trouble worse for me. I just live with it. I avoid the foods that set me off if I can and otherwise I choose to suffer since the side effects are worse than the initial suffering.
An ordinary day includes being awakened too soon by my 5 year old autistic step son. Talk about rough since he jumps his full 56 pounds of weight onto me. But he still doesn’t understand and probably won’t for awhile. Now since we are meat eaters as well as veggie eaters, he is gnawing on my hand. My son contorts himself in different ways all day long. He is definitely a sensory seeker, not an avoider.
Is that skin on my ankles still doing that thing? Damn. Are they swelling? No? Then why? Aw jeeze.
We kind of ramble and hang out until breakfast. Then we do homeschool app for my son and I get on Facebook or play Sims 2 (My current obsession is building houses by theme there. Current theme is nice clean homes in pods due to environmental catastrophe). My husband heads off to work in the other room since during the pandemic he is working from home. I do not work so we don’t spend as much in child care as I make and its easier to go back to work as a woman after staying home than as a man. When he works, we head out to take him to work. Then lunch, any chores I can actually remember to do instead of having them bypass. Damned executive function failure. I know I need to do those dang chores. I want to do them. They just don’t get done sometimes. Then we have supper and continue the same things until bedtime, which turns into a super battle with the 5 year old.
Hubby has autism too. Poor man was diagnosed in the army and lost the career he really wanted. Currently he is a bank fraud investigator and a lay speaker in the church we attend. He and I seem almost perfect. We balance each other and understand when each other is having a challenge. He can socialize and understands the rules. He is very empathetic with others and understands why they do the things they do better than I do. I just don’t care anymore because they don’t care about others.
There are other issues others never really contemplate. Autistics and relationships, Autistics and sexuality, Autistics and Gender Identity, Autism and legal autonomy, Autistics and parenting. I could write whole multipage essays on these topics.
As a final exercise, I will identify me. I am a high functioning, female presenting, cis gender Autistic in a heteronormative monogamous relationship. Both my husband and I are pansexual and sapiosexual. We both live below the financial level we should have achieved but failed to, due to not having the needed supports in place as children and young adults. We share similar political leanings and ideology, though I am more moderate than he is. Our religious beliefs are not the same but fall into a similar category but that is not traditional in any sense for either of us. He is 10 years younger than me and I love him to the point I would kill to protect him or his son who will some day be my son legally. We don’t care if someone is Autistic, neurotypical; straight, gay, somewhere else; conservative, liberal; religious, spiritual, or not; Male, female, somewhere else; cis gender, transgender, no gender, all sorts of other places there. We don’t care as long as you don’t hate on me for my choice and don’t hate on others. Try to eliminate assumptions, ignorance, and hatefulness and we are good.
So this has been a walking window tour of my brain, life, and how things work for me. I hope this does provide some insight into my life, my autism, and me.
Affirming Neuro-diversityRead Now
June 28th, 2020, Lisa Macafee
I created the Affirming Neurodiversity website as a requirement for the Brandman University Autism Spectrum Disorders Added Authorization program. Design and growth of the website has since become something I am increasingly passionate about growing due to the lack of information for and awareness of adults with autism. I was diagnosed with autism after my two children were diagnosed with autism in 2018. I was 37 when I received my diagnosis and only sought one out after reading so many books about autism to help my children and thinking that the traits described in the books didn’t sound strange at all – they sounded like my experiences.
I lived my entire young adult life feeling always like a stranger in a crowd and not knowing why. I had seen therapists many times and have been diagnosed with anxiety and depression, but what therapists missed was that anxiety and depression are the symptoms of untreated and undiagnosed autism. I am not alone in this. From a young age, if children sense they are different or being treated differently, they assume it is because they are bad. Children cannot comprehend reasons for social ostracization. Children internalize everything into their self-concept. Mental health service providers need to be more cognizant of female autism traits and need to be more aware of autism in general, but specifically that AUTISM EXISTS IN GIRLS AND ADULTS and not only little boys!!!
Individuals who did not receive a diagnosis until later in life tend to believe that they are bad people and that is what accounts for their differences. I did as well. Because I felt like an alien in my own life, I thought that meant that I was defective and useless. I made a contract with myself in college that I would not *need* to kill myself if I could prove useful to other individuals who suffered like I did. I got a teaching credential and worked for 11 years in a Title 1 high school in Santa Ana supporting students through drug abuse, gang violence, mental illness, deportations, rape, and teen pregnancy, in addition to all the typical high school stresses. I stayed after school talking with students in need every day for 2-4 hours each day to secure my right to live (Stagg, Belcher, 2019).
It is still shocking to me that so few people in my generation received a diagnosis at all, and those who do are typically young boys given academic interventions and ABA without enough focus on mental health. Autistic individuals are nine times more likely to die from suicide than the neuro-typical population and have an average life expectancy of 54 years (Houting, 2019). They are nine times more likely to die from suicide. How this is not a topic paramount in a program such as the Brandman ASDA certification, I do not know. Academic supports are well and good if students have the belief in their ability to try in the first place, but so many autistics are broken down by the system in various ways, leaving their self-esteem in shambles and their belief in their own ability left in shadow because it’s being compared to neurotypical peers instead of finding out what skills they have in their own right.
The systemic mistreatment, lack of appropriate supports, and/or isolation of individuals with autism has led to 60% of autistic individuals being under or unemployed (Houting, 2019). I have been one of these individuals. I taught full-time for 11 years, but started having burn-out breakdowns due to the stresses that I was not adequately protecting myself from because I didn’t know I was autistic and hence wasn’t aware of how to protect myself. Had I known, I could have been ensuring I had alone time. I could have accepted my heightened sensitivities and allowed myself tools and time to refresh myself. But I did not know I was autistic and thought I should power on ahead and burnt out. I changed careers at 35 because I could no longer teach after the birth of my children – suddenly I had no time by myself and I was drowning.
For example, spaces to be utilized by individuals with ASD should be designed specifically not to contribute to autistic overload. Think about colors and how lots of bright colors all over might compare to more soothing tones. Multiple spaces to sit such as couches facing each other in one area, chairs around a central table, and for those who aren’t in a social mood, a bookshelf with seating in a quiet corner. Bathrooms could be modified to have quiet exhaust fans to remove odors. The goal is to make the environment welcoming and warm without being distracting and overwhelming. Many autistic individuals need space around them, so leaving some space unplanned for so individuals can repurpose space as needed helps as well (Matusiak, 2020).
87% of autistic individuals also have mental illness (Houting, 2019). This does not mean that mental illness is caused by autism, but rather that the stresses that we endure on a daily basis, and the lack of preparation to self-manage these stresses dramatically increases our susceptibility to mental illness. We become disabled by our environment and the neuro-typical people we must engage with to be successful. Over a third of autistic individuals will by physically disabled as well (Harvey, 2018). Autism is a neurological difference that causes us to function differently in many different ways, including the physical. The school system supports the academic and physical inclusion of students, but relies heavily on behavioral modifications, often at the expense of mental health.
Applied Behavior Analysis (ABA) is by far the worst offender in these issues. By and large, the adult autistic community bans speaking about ABA in their forums because it is so triggering for those who went though it. They describe it as having caused Complex Post-Traumatic Stress Disorder (C-PTSD) in themselves. They cite the repeated disavowal of their feelings having worth as their parents ignored their cries for help in favor of allowing a stranger to abuse them. They describe discrete trials where Behavioral Interventionists (BIs) asked them to repeat a meaningless task they had no interest in and already had mastered over and over again to be able to be given anything they valued. They describe food and water being withheld until they complied with the task. They described the things they enjoyed being sought out so that they could be removed as “incentives” to get them to sit through 8 hours of ABA. Some children are recommended 40 hours a week of ABA services! That is the equivalent of a full-time job. Those who promote ABA cite the improvements that children make with ABA, but they do not investigate enough the COST of those “improvements”.
There is a fine line between intervention and abuse. It is difficult for parents to feel social pressure when a child acts out in strange ways in public, and not all families want to advertise that their child is autistic. Many families want their child to be “normal”, but their child will never not be autistic. When experiencing anxiety or excitement, many autistic individuals engage in “stims”, short for self-stimulating behaviors. These actions are often repetitive actions that some people perceive as socially unacceptable. Typical among children is flapping of hands, twisting hair, or rubbing a comfort object. To force their child to learn how to mask and withhold stimming causes them HARM. By forcing children to “look me in the eye when I’m talking to you” means that those children will look into the eyes of the person talking but will be UNABLE to process anything that individual is saying. To force a child to control all stims means that the child becomes UNABLE to manage their stress in a healthy way and internalized it, often becoming monolithically unwell (Kirkham, 2017).
When children’s caregivers and teachers tell them not to emote, the message received is often that their feelings are not valid. This can lead to feelings of being an in-valid person who is ordered to mask their feelings and feign happiness and normalcy. If someone is not allowed to exist as they are, and is not valued for who they are, what message does this send to the child? The message is that they are bad, should be ashamed, and should pretend to be something tolerable for their parents to love them (Keenan, Dillenburger, Moderato, Röttgers, 2010).
Stims should not be suppressed in autistic individuals. We can teach children different self-stimulating behaviors that are more socially acceptable, but autistics need to be able to release their anxiety through stims and their mental health needs to be valued in addition to family shame at “how it might look” to those on the outside. To crush a child for appearances sake is abuse, plain and simple, and the educational system should take note.
Collaboration with stakeholders is crucial for success of autistic individuals. First, including the autistic individual in their own case management and teaching them how to express themselves to their teachers, family, and peers will be important for their health. In education, we so often miss that providing academic supports will mean nothing if the student is unwell from a socio-emotional perspective.
My favorite tool to improve communication, self-awareness, and teach self-management is Cognitive Behavioral Therapy (CBT). Autism research writer Tony Atwood found that CBT has a significant effect when used in treating anger management for children with ASD. Anger, anxiety, and depression, are exceptionally common among those with autism. I appreciate the humanistic and empowering component CBT has for individuals who are autistic (Attwood, Garnett, 2016).
Cognitive Behavioral Intervention (CBI) can be used to assist individuals with Autism gain a more objective frame of mind and clearer perception of reality so that they are able to process their thoughts and emotions in a healthy manner to be able to engage productively with their lives. CBI, based in Cognitive Behavioral Therapy (CBT), is created around the idea that how we think about the world around us affects our emotions, and how we feel about the world around us affects our actions. CBT is rooted in the idea that we can control some of our actions by learning to recognize and stop unhealthy thought patterns and controling our thinking. I find this approach particularly helpful as I can often find myself going down “rabbit holes” that are unhealthy. Perspective and positive framing has been crucial for me to move out of the darkness of depression and anxiety (Mussey, Dawkins, & AFIRM Team, 2017).
I was desperate to be seen in high school, but it felt like no one did. I had excellent grades in the subjects and/or teachers’ classes that I liked, and in the classes I did not like, I determined exactly what I had to do to pass with a “D” and did it. My teachers found this infuriating because I obviously had the skills to be able to perform better, but if I did not respect the teacher or found no interest in the subject, a “D” it would be! I liked most school though, and also liked competition, so it didn’t come up too often.
School was my escape from being me. I was sad though, that I cannot remember ever seeing a school counselor of having a teacher hold me after class to ask if I was okay. I was throwing all sorts of warning signals to anyone who was paying attention. I was drinking at 15 and doing drugs at 17. I dressed like a crazy person – often making my own clothes and almost always wearing my Dad’s old Vietnam War Army jacket. I was basically begging for help, but no one saw me. Why not?
I graduated in Capistrano Unified School District, Aliso Niguel HS, an upper-class mostly white school and felt that the neglect for disadvantaged students of any kind. I went into education because the neglect my peers experienced contributed to one taking his life, and to severe drug use that the schools just ignored. I cannot accept that kind of behavior from schools, so I tried to make it better. I am still trying. We have a lot of work to do. I hope you will help.
Attwood, T. and Garnett, M. (2016). Exploring Depression and Beating the Blues: A CBT Self-Help Guide to Understanding and Coping with Depression in Asperger’s Syndrome. London: Jessica Kingsley. 270 pp.
Harvey, S. (2018). What Is Autism To You? Agony Autie. [Video file]. Retrieved from: https://www.youtube.com/watch?time_continue=233&v=H8hHGIJKf3o&feature=emb_logo
Houting, J. D., (2019, September). Why everything you know about autism is wrong. [Video file]. Retrieved from: https://www.ted.com/talks/jac_den_houting_why_everything_you_know _about_autism_is_wrong
Keenan, M., Dillenburger, K., Moderato, P., & Röttgers, H.-R. (2010). Science for Sale in a Free Market Economy: But at What Price? Aba and the Treatment of Autism in Europe. Behavior & Social Issues, 19(1), Pages 126–143.
Kirkham, P. (2017). “The line between intervention and abuse’’ - autism and applied behaviour analysis.” History of the Human Sciences, 30(2), Pages 107–126.
Matusiak, M. (2020). How to Create an Autism-Friendly Environment. Living Autism.
Mussey, J., Dawkins, T., & AFIRM Team. (2017). Cognitive behavioral intervention. National Professional Development Center on Autism Spectrum Disorder, FPG Child Development Center, University of North Carolina. Pages 1-45.
Stagg, S., & Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7:1. Pages 348-361.
Gender, Sexuality, AutismRead Now
June 15, 2020, Lisa Macafee
I’ve never met a cis-straight AFAB autistic. I’m sure they exist, I just haven’t met any. I *think* this is because our neurology sets us apart, but I can only speak for myself.
Gender seems entirely a social construct to me created to fit us into boxes and tell us what our social roles and personality characteristics should be. For myself, the “female” expectations never fit me and have created much stress, anxiety, and shame. I only found out labels beyond trans and queer, which never felt quite right for myself at 37 years of age and before that mostly felt just “wrong”. When you don’t have a term for yourself, most people just assume they’re bad, myself included. I now have AFABulous (AFAB = assigned female at birth), agender or gendervague, greysexual, and pan.
It’s not just me, either. Autism reduces the drive to follow social etiquette and norms. Autistic youth are 7.76 times more likely to express gender non-conformity than their neurotypical peers. It’s possible that autism could be a root cause of gender diversity, and those who are autistic are also likely to experience gender dysphoria (Janssen, A., Huang, H., & Duncan, C., 2016).
According to research from a Gender Clinic in Australia, approximately one third of gender diverse children in their clinic also qualify as autistic, but are often not diagnosed because their atypical traits are attributed to their transgender status and other causes are not investigated. This is important to note as far as mental health concerns because those youth who were gender diverse and autistic also had higher rates of unhealthy internalizing coping techniques. These youth were significantly more likely to struggle with anxiety, depression, withdraw, physical complaints, and thought problems and reported a lower quality of life. The overlap between autism, gender diversity, and mental health factors suggests that gender diverse autistics are an especially vulnerable group with higher rates of mental health challenges (Mahfouda, S., Panos, C., Whitehouse, A.J.O., Thomas, C.S., Maybery, M., Strauss, P., Zepf, F.D., O’Donovan, A., van Hall, H-W., Saunders, L.A., Moore, J.K., Lin, A., 2019).
Sadly, many people who would qualify as autistic, but weren’t because they were girls/ trans/ doing-well-academically/ whatever have the same struggles of feeling “wrong”. In a study at Anglia Ruskin University, Stagg and Belcher noted that adults who were untreated for autism often were treated ineffectually for anxiety and depression. As children, some in the study reported having no friends and as adults not understanding what set them apart. Dr. Stagg said “One aspect of the research I found heart-wrenching was that the participants had grown up believing they were bad people. They referred to themselves as "alien" and "non human".” For many such people, an autism diagnosis is a breakthrough that explains why they were different without attributing their difference to “being bad” (Stagg, S., & Belcher, H., 2019).
I grew up with the LGBT movement, and I’ve never identified as being “into women” because I’m not into any gender. I’m into a person’s politics, personality, and work that is attached to a meat sack of birth accident. Why anyone is attracted to the body first, I cannot fathom. Plus, if I’m being honest, bodies are all kind of gross. What can I say? I’m weird, medically so.
Speaking of medically weird, I also have Poly-Cystic Ovarian Syndrome (PCOS) which, for me, means that I also have increased testosterone levels close to that of an AMAB person (Assigned Male At Birth). Strange, right? I have broad shoulders, gain muscle tone seemingly just by thinking about it (much to the jealousy of my male partner) and even have bigger hands than him, too. It’s no wonder my gender identity is a mess. I have found PCOS groups who self-identify as being intersex (variations in chromosomes, reproductive organs, or hormones), because of having PCOS, and I can say there is some degree of validity for myself here as well.
While controversial, the Androgen theory of Autism that stipulates that higher than average levels of testosterone in utero contribute to an autistic birth. The findings were that significantly more women with Autism Spectrum Conditions (ASC) reported hirsutism (being hairy), bisexuality or asexuality, irregular menstrual cycle and dysmenorrhea [likely due to PCOS], severe acne, Gender Non-Conformity (GNC), and “family history of ovarian, uterine, and prostate cancers, tumors, or growths”. Mothers of ACS children reported severe acne, breast and/or uterine cancer, tumors, or growths, and the same family history of cancer that ASC girls reported. These findings may help explain the greater incidence of autism in boys, but more research needs to be done to determine correlation versus causality. It does tie my personal weird into thousands of other women and make me feel like one of a tribe, however! (Ingudomnukul, Baron-Cohen, Wheelwright, Knickmeyer, 2007).
I started this blog because it feels like no one understands autism in adult AFAB autistics. I was not diagnosed until my children were and I realized there were *other people like ME*! I could not believe I missed all the club meetings until my late 30s. Autism is especially missed in those who perform well in school, where language is not impaired, and typically in girls. If we can identify early and late signs of autism and make services available for the needs of our community, we can reduce anxiety and depression, decrease the suicide rate for autistics, and help autistic people lead meaningful lives well into their adulthood.
Boorse, B., Cola, M., Plate, S., Yankowitz, L., Pandey, J., Schultz, R. T., & Parish-Morris, J.. (2019). Linguistic markers of autism in girls: evidence of a “blended phenotype” during storytelling. Molecular Autism, (1), 1. Pages 1-12.
Ingudomnukul, E., Baron-Cohen, S., Wheelwright, S., & Knickmeyer, R. (2007). Elevated Rates of Testosterone-Related Disorders in Women With Autism Spectrum Conditions. Hormones and Behavior 51, Pages 597–604.
Janssen, A., Huang, H., & Duncan, C. (2016). Gender Variance Among Youth with Autism Spectrum Disorders: A Retrospective Chart Review Transgender Health Volume 1.1. Pages 63.69.
Mahfouda, S., Panos, C., Whitehouse, A.J.O., Thomas, C.S., Maybery, M., Strauss, P., Zepf, F.D., O’Donovan, A., van Hall, H-W., Saunders, L.A., Moore, J.K., Lin, A. (2019). Mental Health Correlates of Autism Spectrum Disorder in Gender Diverse Young People: Evidence from a Specialized Child and Adolescent Gender Clinic in Australia. Journal of
Clinical Medicine, 8, 1503.
Stagg, S., & Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7:1. Pages 348-361.
June 5th, 2020, Lisa Macafee
I have been wondering why it seems difficult for many white Americans to understand the deep harm of microaggressions. I am writing during the Black Lives Matter demonstrations, civil unrest, and COVID-19 lock-down. These experiences have brought to the forefront of my memory one of the most horrible times of my life. I cannot stop thinking about it as being every day for some people of color. I am not a person of color, but I will speak to the insidious harm of microaggressions from my experience with dating violence.
I should note that I am autistic, and sometimes the intricacies of social interactions are lost on me.
I am a child of the 1980s. As such, I grew up with cultural messages about love from Disney movies. Your story is all about falling in love and starting your committed relationship. Once you’ve attained couple-status, your movie is over. That’s all there is. Happily ever after. The End… Of course, you and I know that is not how life works. Relationships are work! They are hard! No one ever told me that.
The other big and glaring thing that no one ever told me about was sex. As soon as I felt ready, I wanted to get it out of the way to see what all the fuss was about. No one told me how to have sex though, and my first partner was equally inexperienced as I was.
In school, sex ed was a series of dull black-and-white line drawings showing how a penis would be inserted into a vagina to deposit sperm to make a baby. There were two ways to avoid pregnancy; abstinence and condoms. They never told us there were other types and ways to have sex, or how to have sex at all. I guess they couldn’t.
Being a girl, I wasn’t over-exposed to pornography, and being greysexual, I really had no interest in seeking it out. The few that I saw featured women desperate over some weird squishy-looking thing and making the most bizarre noises. All the focus was on the pleasure of the man. The woman was something used by him to have an orgasm. She was a prop. Interestingly, most porn doesn’t show foreplay.
I was a senior in high school and in love for the first time. He was a boy unlike any I had known and he loved me fiercely. We were in love with one another. Here’s how my logic broke down at the time: if you are in love, that means you have found your soul-mate and will be together, forever, happily ever after, so it was okay to have sex before marriage, because obviously we will be together FOREVER. I figured sex couldn’t be that hard and that it would be obvious how to do it once we tried.
**TW: sexual violence** It wasn’t obvious. Neither of us had any idea what we were doing, and it hurt. A lot. And I bled. But I had heard that the first time a woman has sex, bleeding and pain was common. I wasn’t worried. But he didn’t have any discomfort and really, really, liked it. He wanted to try it again. I said that I hurt and was bleeding. He assured me that it only hurt because it was the first time, and the more we did it the less it would hurt.
A year passed. Now when I said that sex hurt, he said that was because of Eve’s original sin and that sex would always hurt women. That it was punishment from God. He would say things like “I can’t help wanting you, I love you so much, don’t you love me too?” He implied that it was this way for all penis/vagina interactions. Neither of us thought to look it up. Sex wasn’t something anyone talked about besides boys boasting of “nailing” some “bitch”. I never heard a vagina-owner talk about sex in a positive light, either. I never heard my parents make any reference that they ever had sex. The only proof of that was my existence. I didn’t know this was unusual. So we continued.
I have scarring. He could demand sex four times in a day. I would show him that I was visibly and actively bleeding and he would make inferences that he needed sex and that’s what couple did. Did I love him, or not? And I, inexperienced and autistic, let him do what he wanted.
I never thought of this behavior as abusive because I had never been given a sexual violence example as abuse. He wasn’t punching me in the face, so it must be fine.
He loved me. I truly believe this. He fell into the same sort of Disney-thinking that I did. If we were in love, we must be perfect for one another. But we weren’t, so he slowly tried to adjust me to be his perfect partner.
I had tattoos, and was even then, a weirdo-rebel. He would tell me things like: he wished I didn’t have tattoos because women with tattoos look trashy. When I would go for a haircut, he would tell me not to get it too short, because women with short hair look like they’re trying to be men and are ugly and when I came home, would tell me it was too short. He would ask that I wear skirts and dresses, because that’s what women look beautiful in (and why would we wear anything except for our estimation of beauty in our partner’s eyes?). He would ask that I wash my face more so I could avoid getting that gross pimple. He would tease me for eating my whole dinner at a restaurant, saying that now he could play with my squishy “rice tummy”. I weighed 131 pounds, up from 126 when I first started dating him and am 5’6” (I was TINY).
He was going to be an English teacher and was going to UCLA. He told me, who was going to Saddleback Community College, that only losers went to community college, and if I wanted to be successful, I had to go to a university instead.
I started taking a Korean course to try to talk with his parents. As it was, whenever I came over to his house, he and his parents would have long arguments in front of me in Korean that I was expected to sit quiet and still through until they were done. We often didn’t go to his house. We would meet at the library, or some other place instead, where he would request we have sex in the car, in broad daylight, in front of businesses. We never did learn about foreplay.
The summary of this relationship was that I didn’t matter. What I wanted didn’t matter. Who I was didn’t matter. My existence was meant to bring him pleasure and that was that. I dated him for two and a half years. TWO AND A HALF YEARS. During that time, he systematically broke down who I was and re-made me into the partner he wanted. And I let him, because “I loved him”. As if that made the things he did okay.
These are microaggressions. One little innocent comment by itself is not that big of a deal. I have a wonderful partner now who occasionally microaggresses accidentally. The difference is that when I point out how what he did made me feel, he apologizes and we work together on how to support each other better. Another big difference is that I am safe and encouraged to point out when I am uncomfortable and have the energy to do so.
So many people experience microaggressions that are harmful and damming to the core of their being, but that are too small in and of themselves to bother picking a fight over or addressing ever time they come up. Eventually, one becomes so tired of trying to correct them that people often just accept them as part of life and ignore them.
The danger of too many microaggressions from within our personal structure of support is that we can internalize the remarks and messages, and therein lies the true damage.
I will never know what it is to be a person of color who experiences microaggressions, but I do know how much what I experienced in this relationship harmed me. I had no self-esteem. I believed I was worth nothing without him.
When he left me (I would never have left him), I was devastated. I drove home running red lights and sobbed on the floor of my home for hours, too limp to even cry on a bed. I cut all my hair off and got more tattoos and slowly found pieces of myself that had been broken and shoved into the dark recesses of my mind. I tried to fit them back together and made new ones when those pieces were irreparable. A lot of myself was irreparable.
I justified continuing to live to myself by teaching at Los Amigos and trying to find the kids in situations like me and help them. If I could help other kids not make the same choices I did, then I could allow myself to continue living. It was a deal that I devoted myself to 100% until I was able to slowly re-build my sense of self and worth.
I was 30 by the time I could look in the mirror and not hate myself.
I was 33 when I decided that I could allow myself to go to therapy to heal, that I might deserve that much of someone else’s time to talk to worthless me about my life (what a huge burden)!
I was 37 when I got my autism diagnosis that helped me piece together the stories that never made sense.
I’m 38 now when I mustered the courage to get this toxic experience our of my mind and write it down.
I can only imagine how challenging it could be for people of color for whom microaggressions come at them from their partner, children, supervisor, peers, family, random-person-on-the-street-who-feels-entitled-to-your-time, EVERYONE. To have these subtle implications that ___ is better than whatever you are doing thrown at you all the time. The mind staggers.
This 1 minute video clip encompasses the damage of internalized oppression from microaggressions. Every iteration of the classic "White Doll, Black Doll" experiment used to win Brown vs. Board of Education makes me cry, but this image from the end is the one that gets me.
I am autisticRead Now
June 5th, 2020, Lisa Macafee
I am autistic and I am most often alone, even in a crowd.
I might deeply respect your work and politics, and you may feel the same about me, but chances are if we go to lunch to start a friendship, we will both feel disconnected and like the conversation was a lot of effort to maintain (if you are neurotypical).
The closest and most rewarding friendships I have made as an adult are with others among the neurodiverse population. I have felt a deep connection to, and understanding of these folk. I don’t immediately feel connected to every other autistic person, I mean, we’re still people after all, but I do much more readily than with the neurotypical folk I have tried to befriend.
I understand why so many of us die tragically young from our own hands. If I had been through the traditional ABA methods, they teach children to try to be typical. ABA tries to help autistic children fit into a neurotypical world so they could befriend those folk that I have tried to and failed. But what ABA is missing is that those forced friendships made while masking a typical neurology are costly to the autistic. It takes so much work to create appropriate facial expressions and responses that it becomes a full-time job and is not a rewarding relationship on my part. If I cannot be myself with you, then you are not my friend.
The closest I came to suicide was 9th grade. I started high school and sat with my “friends” from middle school, who I had nothing in common with and felt no connection to. I did all the things that were expected to maintain friendships and was “successful” at it. But I never in my life felt so invisible. Felt so dead inside and out. I felt like a ghost in my own life. No one knew me, not even myself, so why did I exist? The only reason I did not end myself was because I knew how much it would have made my mother sad. I would have loved to have been diagnosed autistic at this time because it would have explained why I was different. I thought there was something wrong with me. I thought I was broken. If I had know that I was different, and how, it would have allowed me to start problem-solving.
At some point in 9th grade, I just got up from the lunch group of “friends” and wandered the school grounds alone because if I sat there any longer I wouldn’t survive. I wandered around and looked for other loners. This is how I started to find my first real friends, among the outcasts. The lot of us had terrible self-esteem and the majority of us turned to drugs and alcohol to escape our inability to be “okay”.
People talk about the rising rates of autism with dread, but what they don’t understand is that there is nothing wrong with us, we just get along better with folk like us. You get along better with folk like you. There’s nothing wrong with that, but the difference is that I would never take your children and try to force them to act more autistic so that your children could more easily befriend my children. I would never take a child and try to force them to become something they are not. It seems the very definition of abuse. It harmed me to try to “fit in” because I was slowly drowning while I succeeded. The price of acting neurotypical is the suffocation of my self-esteem and sense of worth. I mean, if I was worth anything, I could be myself, right? If I have to repress myself to fit in, them my self must be disgusting to people.
While others despair at the rising autism diagnosis, I rejoice. These are my people. Neurodiversity is hard, because everything different is hard, but that does not make it bad. I hope that my children will understand that their differences is what make them special and wonderful and they should never feel the need to repress the truth of their selves. I want to offer them supports as to how to engage in social interactions effectively when they choose and want to, but I will never force them to try to make friends with typical kids. I will teach them how to not irritate other people while they stim, but I will never discourage them from stimming to reduce their stress. I will teach them how to create facial expressions that people expect so they can implement them as a skill, but not force them to constantly uphold those expressions. I hope that my children will be more prepared for life than I was.
Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.