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.
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.