Each individual who has an autism spectrum diagnosis got that diagnosis based on deficits. That isn’t good or bad, but rather, simply the way diagnosing works. Diagnostic deficits are based on the social and expected norms exhibited by the majority of people. Deficits are determined by a significant deviation from this majority norm. And, if you deviate far enough from the norm you get a label. If you have a group of deficits that line up with the autism spectrum disorder label then you get that label.
Once an individual has the autism label, we begin teaching skills to overcome the deficits. This is based on a societal assumption that it is important for all human beings to look like the majority of human beings. We call this look “normal.” It is expected that every human being look as close to normal as possible. It is further expected that all people who don’t look or act normal very much want to look or act normal. Hence, with this mindset, it makes sense to teach skills to overcome diagnostic deficits.
I have nothing against learning new skills that allow me to look like the majority of the people on the planet even though I am autistic. I like being able to converse in an expected manner and to inhibit all my autistic noises so as to keep earning an income. Even though this means I must have considerable down time to stabilize my sensory system every day I still love being able to make this choice. I consider myself lucky to be able to do so because for most of my life my sensory system wasn’t organized enough to even allow this sort of choice.
However, there is an unintended negative affect that learning new skills is visiting upon me. It seems that a few skills allowed me better abilities to navigate in the world. Then, because I thought if a little bit is good even more would be better, I deliberately set out to learn more. In fact, I learned how to pass in the world as a typical person – to appear as if I am not autistic.
This was wonderful for a while because it allowed me to increase my standard of living. It allowed me to move from Section 8 Rental Assistance unit to a small home of my own. Once my children were grown up, with a new family size of one, I rose above poverty level income.
Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy.
But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.
In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.
I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.
We initially think it to be good because it opens more doors and allows more access to do/be what we want in life. Unfortunately, the unintended negative affect is that it raises the bar for us in all areas that are hard – the areas that got us our autism diagnosis in the first place (communication, social, sensory). Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.
I am writing about this because I hope people will become aware that what we are currently patting ourselves on the back for accomplishing in the field of autism – making autistics look indistinguishable from their peers – turns out to not be altogether good. We need to do better. Let’s stop patting our own backs and start listening to autistics. The lived experience matters.
JUDY ENDOW, MSW
Judy Endow, MSW is an autistic author, artist and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.
[…] Judy Endow discusses the effect of learning new skills and developing masking techniques to more easily move through society. Learning new skills can be beneficial, but it can also be tiresome and dangerous, as Endow describes. […]
[…] Burnout happens when the demands placed on an autistic, internal and external, exceed their capacity to deal with those demands. […]
thank you for this blog. It is a really good description on what a autistic burnout is. Is it okay if i translate this into dutch for further use on making autistic burnout more known and accepted in the netherlands? Ofcourse i will use your name as the source writer.
I am married to a person with autism and i have 2 daughters one with adhd and 1 with autism.
[…] what I suspected happened now was that I had a burnout during high school, and, instead of recovering from the burnout like I should have, I put further […]
[…] I guess I kept hoping it would go away. That my abilities would somehow reappear, but they haven’t. […]
[…] in university. While not the first to discuss the topic, blog posts from Musings of an Aspie and Judy Endow were starting to become more widely shared. I also found a YouTube series called Ask an Autistic, […]
thank you for writing this. I’m a parent and I think I push my ASD kid out of fear. I will tell you the more focus on trying to explain what “normal” is- in an effort to help my kid, the more I realize how really bizarre most neurotypical behavior actually is. Also- I wonder about the cost, just the constant fear and “correction”- my kid is 15 and I want him to pursue his development of his true, authentic self- but I’m “coaching” for normal, too. It really sucks- but mostly for him. Thanks for writing this article olli
As the mama of a five year old autistic daughter, I am curious where to draw the therapy line. I don’t agree with ABA and having someone overly correct her. But I do want her to have every opportunity. College, marriage, etc. So how much speech and OT etc is too much? I’m hopeful that all of her therapies just draw out abilities already within her that she can’t currently express, but I would never want to take away the richness of the life she gets to experience just as she is.
I am the single mother of a 25 year old Aspie and I don’t know where to turn. My daughter is capable of doing anything she puts her mind to, including very complex video games, but will NOT accept the reality that I might not always be here and that she needs to become more financially independent (i.e., get a job, find a career). I’m too busy keeping a roof over our heads and some food on the table to become her full-time vocational counselor. Are there any organizations that can help?
“The lived experience matters.” speaks to me on many levels: 1) Listen to what autistic people have to say about the pain, effort, and at times self alienation that goes into trying to “look normal” 2) Diagnostic process can further punish those who work so hard to “fit in” by denying the supports they need to keep head above water and 3) Always ask “what does life experiences does this person wish for, value?” whenever taking on role of the “helper” (ie parent, therapist, etc)
I really enjoyed this. There is a dire need for more accessible services and help for adults with autism.
I’m an autistic mom raising a child alone (ex hubby walked out when he was 2, no child support), struggled through college while working full time at night and caring for kiddo (autistic as well), and never could get ahead. Couldn’t get childcare or housing assistance, yet still didn’t make enough to survive without living with family, paying them rent, thus not having a way to save up & get out. I did graduate, but with massive loans (to me at least) and a career that pays marginally better than a much less stressful & more casual job.
Fibromyalgia has been torturing me for 15+ years and after a bad reaction to a medication (left me bedridden for months), I was unable to work. FMLA was there, and I’d had both long and short term disability policies for years (because it’s the “responsible safety net” thing to do). Unfortunately my dr didn’t know how to fill out the paperwork, causing my claim to be rejected. Then he told me I had to tell him what to say, so I had to write my own letter- which his office threw onto some letterhead & mailed out. This just seemed a total injustice to me, he’s the professional- why isn’t he held responsible for either knowing what goes on said paperwork or knowing where to reference any questions he has.
Unfortunately, there’s nothing I know to do now. I can file another appeal, but my dr won’t touch paperwork unless I have cash & I haven’t had an income for over 1 year. I had the insurance, the savings, etc. but to no avail. I lived on my savings when I got sick, because I’d been tricked into thinking that the policy I paid for was actually real. I can’t get medicaid as I live with my parents (supposedly), and I’ve developed an extreme aversion to the phone- it’s nothing but bad news & stress (and I have sound sensitivity), so even if there was someone to call, it’s so difficult to complete the task that I just can’t do it without having major anxiety.
Living with chronic pain untreated & under treated (sometimes told I’m too young/pretty/whatever to be in pain), dealing with both my autism & raising my child, being alone without a partner to enjoy, struggling with my independence & having to move back into my parent’s home- all these things and many more leave me feeling like a prisoner in my body, my mind, & my life. And the hope? It’s there, but it’s fading fast.
[…] The anxiety diagnosis never quite fit either, because panic attacks weren’t really an issue. The only REAL diagnosis I’ve ever been given is Generalized Anxiety. I have depression too, but it’s not severe or crippling. It’s mostly caused by exhaustion. And this can be explained by Autistic Burnout. […]
[…] Autistic Burnout is a very real problem. Burnout is what happens from years of passing. Years of floating through and coasting as a neurotypical. And right now, it’s where I am. Right now, I am burned out. […]
[…] normal isn’t something I do easily or well. I’ve had meltdowns and burnout on multiple occasions. I don’t react or deal when I reach a breaking point. I don’t […]
[…] Another spectrum blogger, Judy Endow says this in one of her blogs: […]
[…] We must listen to autistic people about the toll of looking "indistinguishable from their peers". […]
I think it adds to this conversation that we now use the ADOS as our gold-standard diagnostic tool for autism. And that tool is 100% about how you appear. So people who have learned to “fake it” are literally no longer eligable for the diagnosis, much less for accessng services.
Personally, I hate the phrase “faking it.” I’m not faking, I’m taking on a role with deliberation, in the hopes of connecting with others who don’t have the ability to be so deliberate.
Wow, very well written and conveyed! Something I need to understand very deeply, for my daughter and my friends! Thank you for being so open and honest about your experience!
oh, Judy, I’ve been reading about this for years, and trying to explain it, but you’ve written it better than I’ve been able to even explain to myself. I’m going to save it as a pdf, and take it out and read it on my phone when I need to. thank you.
Terrific post. We need the social model out there, loud and proud. Others need to get over it.
Thank you for such a powerfully penetrating post. Every part of it resonates – a roaring whisper!