Article quick facts:
- Referring to autism and other neurodivergence as “hidden” or “invisible” lacks nuance because sensory and coordination disabilities are often visible depending on context
- Apraxia and sensory disabilities are often misinterpreted as willful behavior or laziness and are socially punished
- The medical model of disability is incomplete and also lacks nuance, causing harm to people whose disability is at least in part dependent on environments, social norms, and external circumstances
Social media memes, and restroom doors, and accessible changing rooms declare, “NOT EVERY DISABILITY IS VISIBLE!”
True… but that doesn’t go far enough to make life any easier for many of us.
These statements about the visibility of disability are a well-meaning and important message to consider. I often present as “normal” …and that is where the problem of “hidden disability” begins.
Glossary:
- Apraxia: often called global coordination disorder, dyspraxia, or developmental coordination disorder, is a motor planning disability that makes performing many tasks difficult, including speech, walking, balance, organizing thoughts, sequencing, identifying emotions, hand writing, especially in novel situations and environments
- Interoception: Identifying and being able to describe feelings and sensations within the body. People with poor interception may not be able to recognize or identify when they are in pain, thirsty, hungry, tired, needing to use the restroom, anxious, dizzy, or ill.
- Proprioception: understanding and sensing one’s body positioning in physical space based on information from the skin, inner ear, eyes, and pressure on the joints. People with poor proprioception may not be able to know how move their body without looking at their limbs, know how much force to apply when engaging their bodies, or understand how much distance there is between their body and external objects.
The medical model of disability:
“…primarily figures disability as a problem of individual bodies in need of cure or repair” (Yergeau, 2018).
The medical model of what disability is encourages us to look for what is “wrong” or “lacking.” Most people expect to see something that clearly identifies a person as disabled. People who are walking unaided, not accompanied by an assistance animal, who speak fluently, or are not using a white cane are considered to be fine– or normal— and not requiring any adjustment in attitude, environment, or communication.
Humans are a neurodiverse species, we are racially diverse, we are chromosomally diverse, and have diverse genders, sexualities, and communication methods. Every single human being is unique, yet we are still fed ideas of how we should behave, how we should look, even how we should move!
Social norms, to everyone’s disadvantage, encourage people to conform, and there is sometimes leeway given for those humans who— on first impression— can’t behave or move in a certain way. Unless people see a wheelchair or other indicator of physical disability, they tend to assume any unexpected behavior is a threat or a willful desire to be different.
These first impressions people make when encountering “visibly” disabled people are sometimes helpful, sometimes discriminatory, and often rely on generalisations and stereotypes. But those of us who give a first impression of so-called normality, may face disbelief, embarrassment, suspicion, or a myriad of other emotional responses when we make our needs known.
So often, my disability is visible, but it doesn’t fit with those stereotypes and generalisations that come to mind when we view the diversity of our fellow humans through a medical lens.
The statements declaring that not all disabilities are visible disappoint me because they lack nuance. To start with, my disability is visible (if you looked at things without those stereotypes), and here are a few examples of why:
As a child, my disability was obviously visible every time I went to the public swimming pool. I got picked on, bullied, and teased. It was visible, but not in the accepted way that disabilities resulting in assistance, pity, or a mobility aid are– so the teasing, bullying, and name-calling were more likely to be overlooked or excused.
Take the example of the swimming pool. I walk differently– especially when I am having to walk in water one moment and on dry land the next. Swimming under water, I experience the wonderfully soothing deep pressure of the water on my whole body and it gives me that instant regulation and calmness that proprioceptive input is so well known for.
Then, as I climb out of the pool and walk to the changing rooms, that pressure and calmness are suddenly replaced by flimsy air that provides me with nothing at all. My legs turn to jelly and the edges of my body get lost again in the external world whilst my brain is screaming “save me from the terror of the noise, smell, and lights!” The overriding sensation of wet feet is more powerful than anything else, and my legs are still convinced we are walking through water.
Or, according to the unkind children and the finger pointing adults sharing the pool with me, I “walk funny.” I still walk funny— in fact, I plan almost every step I take. I have very few physical movements that require no thought, and those that do require no conscious planning or directing, are not the sort of physical movements that are perceived as particularly useful!
I can play musical instruments without conscious thought. I can drive without planning my motor movements (pun totally intended!). I can stim without even realising I am (another gift to potential bullies). But I cannot go up or down stairs without being able to see my hands and feet.
I cannot walk “normally” on the poolside after being in the water. I might scream instructions inside my head, demanding my legs walk properly. I might remind my feet with an angry internal voice that I am on dry land now— but the message is disrupted and delayed and I have no control over how I walk.
My disability is visible in so many settings, but it doesn’t always fit with the idea society is sold of what constitutes disability.
- It shows whenever I carefully craft a joke using logic and my extensive research of popular culture– but deliver it in a monotone voice and with terrible timing!
- It showed whenever I was told to hurry up tying my shoelaces, putting on my coat, or brushing my hair, and my train of thought was lost, and I couldn’t get back on track with the task, or had to start it all over again.
- It shows when I unexpectedly see someone I know but haven’t had time to script a suitable greeting in my head, and I dump a load of random, boring facts on them about why I am in that place — but unlike my jokes, this time my words are delivered with disproportionate enthusiasm!
- In fact, every time I choose to share an interesting fact, as a way of entering into a conversation….or each time I point out an error or inaccuracy as a form of small talk, my disability is painfully visible. (I need to compassionately remind myself that correcting other people is generally not welcomed as a way of building rapport).
- It showed when I tried to keep up with conversations about make-up, pop stars, and boys – but was clueless and unable to take part because I didn’t feel like and dislike, attraction, and desire in the same way as my school friends, due to my interoceptive system working in a muted way.
- It shows when I go in and out of shops, and my brain and body are out of synch to the changes in temperature, lighting levels, smell, and noise. I immediately respond with pain to some of those sensations and have a delayed response to others that leaves me feeling all jumbled up and yucky inside, sometimes hours later.
- It shows when my face looks blank and disinterested, but I am actually so engrossed with what is going on, I have nothing left to put into working out and applying the correct facial expression.
- It shows when I become unable to speak or move or think due to overwhelm and my vulnerability sky rockets and acts like a beacon to potential abusers.
- It shows every time I use logic instead of intuition to work things out and appear awkward for taking things literally.
- It shows when I rely on my hypervigilant brain always scanning the environment for potential threats, and my activated body that is poised to respond to danger. This causes me to become overwhelmed and shutdown or interpret a social situation differently from how it was intended.
- It shows when my environment changes faster than I can process the new information, and I go from my comfort zone of being competent, confident, and engaging, to being lost, scared, and flustered. This can be misperceived as inconsistency or emotional instability by those who place the problem as being in me rather than in my environment.
But when I articulately express myself and describe what I need to remain in my “able” state of being, I am frequently not taken seriously because I don’t look disabled. Being Autistic highlights beautifully how disability is not best served by the medical model alone.
My ability to thrive, perform at a high level, and engage meaningfully with other people is part of who I am. In the right circumstances and environment, I can confidently say there is nothing lacking with me. For many— but not all— disabilities, there is nothing lacking with others in their “right circumstances,” either. I need no reasonable adjustments at home, because it is perfectly fine to be me— to be Autistic— in an environment I can arrange to meet my needs.
Do I get overwhelmed at home? Not often.
Do I get misunderstood at home? Rarely, and only as much as anyone else.
Am I less Autistic? No. In fact, I can be as Autistic as I like and do things my way, in my own time, eating the same meal every day if I like, engulfed in my fluffy blankets, my favourite music on repeat, and no lights on – or whatever it is I need to be regulated and at ease with myself.
Perhaps the issue we should all be talking about is not the one of “NOT EVERY DISABILITY IS VISIBLE” — because many of them are. Maybe it is time that society metaphorically opened its eyes to the idea of some disabilities being contingent on environments, procedures, and communication.
Physical adaptations like ramps and accessible spaces are frequently planned into new buildings. Procedures that use unambiguous language, or options for communication that do not rely upon the telephone, are less frequently encountered.
Many Autistic people experience sensory processing differences, some of which may be distressing or result in sensory trauma, and may find an event providing an affordance of sensory trauma to an autistic person may be perceived as inconsequential by non-autistic people in the same environment, if perceived by them at all (Fulton, et al., 2020)
The different ways Autistic people process the world drive the different ways we act in the world. We may think, feel, speak and move differently to non-autistic people because the way we process the world is different to theirs. It can be difficult for people whose experience of the same spaces, events, social interactions, and procedures are so different to ours to understand why these spaces, events, social interactions, and procedures are so disabling for us.
My disability is not simply a defect within my body or brain. My body and brain certainly work differently to the majority of people’s, but much of how I’m disabled is related to other people’s perceptions of my behavior and the under-accommodating circumstances of my environments.
The most impactful ways I’m disabled are rooted in how my differences are seen or not seen— and by how my differences are perceived.
I would love to see a time when we don’t need accessible restrooms to declare on the door that “not all disabilities are visible.” I look forward in hope, to a time when people won’t be scrutinising my body and brain for signs of “what is wrong with me” — but instead will be committed to making spaces, events, social interactions, and procedures accessible to all.
Editor’s note: A primary goal at NeuroClastic is helping to get information about what it means to be autistic and otherwise neurodivergent into the mainstream, like in classrooms and workplaces, because we believe in the goodness of others. We believe that most people, when given the right information, will automatically adjust their perceptions, interactions, procedures, and environments to be more accessible to all people.
References
Sensory trauma: Autism, sensory difference and the daily experience of fear. (2020). Fulton, R., Reardon, E., Richardson, K., Jones, R. Autism Wellbeing, CIC.
Yergeau, M. (2018). Authoring Autism: On Rhetoric and Neurological Queerness. Durham, NC: Duke University Press. p107
I ride a motorcycle, play several musical instruments (but not at the same time!) and I love nature and the outdoors.
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18 Responses
This is so good! It gets right at the slice judgments that we encounter so often!
I’m thinking that I like your post Emma, “Autism: Not Such A Hidden Disability with Apraxia” and it is society that has made you feel as if your ‘lacking’ or ‘different’. You are PERFECT just the way you are Emma because God has made you a perfect, unique being. It is a shame that during the course of our lives we have been told how to act and feel and what we should like to eat and how each one of us possesses unique talents which the majority of us don’t know that we have. I remember going to public school in northern NJ and the teachers were so kind and understanding and they were like having a good friend or another ‘mother’. I also remember how we were told that each one of us was a unique being and that we should all be considerate and respectful of one another and celebrate ‘who’ we were. We had art class and music, gym and later on when I got to public high school, wood shop, industrial arts, sewing, cooking or many different foreign languages. You could also take musical instrument lessons at school if your parents were able to rent/buy you the instrument that you wanted and take the lessons at school. When I first got to high school, you sat down with your guidance counselor and decided if you were following the ‘academic’ track and had plans of attending college or if you were following the ‘vocational’ track and planned on attending vocational school. What was neat was that if you did choose the ‘votech’ track that, you would take your necessary academic classes in the morning (English, Math, Science, Gym) and then around noon you would head outside to the front of the building and take the school bus over to the votech building where you received training in your intended ‘trade’. What a great program! What a great idea! Everyone graduated with some sort of plan in place that made them productive members of society!! My point is, is that when I was in the elementary grades that they actually had you take ‘tests’ to find out what your interests and talents were and they would help you pursue them! All of a sudden, these schools started taking these programs away because they claimed that they no longer had the money. That’s all a bunch of bulldinkey, but I won’t get into that! My further point is that everyone was celebrated for their UNIQUENESS and encouraged to actively engage in some of their life’s passions and develop hobbies. These children (and parents) are lost today. I use to substitute teach and I can tell you firsthand, these children are not encouraged to have hobbies or anything! All they know how to do is use the latest technology and socialize. This is what society and the government has done…. the majority of people are inept and the majority are the one’s that make the decisions. The people that are called ‘different’ are the ones that they label ‘disabled’ or handicapped and I hate to tell you society, but the average masses are not the people that are going to solve the problems of the world! All of the greatest inventors, scientists and geniuses are the ones that are on the Autistic Spectrum or Dyslexic or present with what society has termed, ‘learning disabilities’. But they aren’t learning disabilities at all, these are just individuals that take in the information in a way that is not the ‘cookie cutter mold’ way that they are teaching the hoards of ‘average masses’ in the public school system. Even today, with this substandard public education system that we have, the children that they have dubbed ‘learning disabled’ and treat as if they are inferior or something, will usually come out on ‘top’. Because they possess an innate desire to learn and usually have a thirsty quest for knowledge and will read, study and research on their own and educate themselves. Look at yourself Emma, look at what you have accomplished in life with all of the bullying, targeting, and humiliation that you had to endure in a society which was/is suppose to protect the people that they have labeled ‘disabled’. What people need today, whether they agree with me or not, is a little ‘God’ in their lives. They’ve forgotten how to be kind and considerate to others and they’ve forgotten what the good book says.
I do want to point out here that there are people out there pushing a very abusive version of God whose idea of “perfect justice” is to send people to be tortured eternally in hell just for the “crime” of not believing he exists due to lack of evidence, all because two people ate a fruit while still in a childlike state not knowing right from wrong until that fruit was consumed, and also because of the fact that humans are real creatures and can’t be perfect 24/7. These people, who believe in this toxic version of God, also heavily imply that said God sees certain groups of people as inferior and that the “godliest” people are the ones who have the “right” to dump on them.
And I recently read this article (https://rolltodisbelieve.com/prayer-why-christians-always-forget-to-pray/ ) which revealed another facet of these toxic religions, which attributes the most “God-power” to the most charismatic (and often the most manipulative) people. That is a version of God we do not need. Those who do believe in God need to learn to be kinder to each other and more understanding, those who don’t believe don’t need to believe in any gods if not inclined that way but do need to connect with others, and with nature, and with everything that makes the world good, and to be kind to others as well. And those who do believe in God also need to nurture these connections on Earth and not simply use God as a replacement for them. But what we don’t need are the toxic versions of God (or gods) whose primary purpose is to justify propping up abusive systems. The versions that – I’m going to just come right out and say it – make religion as a whole look bad.
You’re right Lucy, there are a lot of ‘toxic’ forms of religious practices and manipulation tactics going on in the world and I sometimes wonder how certain people are able to sleep at night. I don’t know if certain people just simply don’t have a conscious or if they have a personality that is cold and uncaring or if they grew up being mistreated and having so much hate inside that it’s just become part of them. It certainly doesn’t cost anything to show another person a little consideration or have kindness and compassion in your heart for a child, animal, senior citizen, disabled person or whatever the case may be…. just a living being. I’ve just been witness to a lot of nasty comments being made by so called ‘professionals’ and I’m appalled. Sometimes we all need to sit back, take a break, and reflect on where we’ve come from and where we are going and perhaps, what changes we need to make to become better people.
I agree.
(my attitude is probably affected at least a little bit by me being exhausted, in pain, and frustrated, today) That statement, “Maybe it is time that society metaphorically opened its eyes to the idea of some disabilities being contingent on environments, procedures, and communication.”, brings to mind something heard in a social studies class years and years ago, it went, “Human societies are just like those pesky fractions in math class, they eventually resolve to the lowest common denominator.” I have no expectation that society will metaphorically open its eyes. Ever.
Sometimes it’s better not to expect too much and then you can be pleasantly surprised if it happens!
Throughout the school years with my son, I encountered a lot of teachers/administration pretty much saying that they didn’t view my son as being disabled. One person actually told me that he “….didn’t see any wheelchair or cane or anything of the sort”. Now, most of these pompous individuals just happened to be in the south (not surprised?) yet they were all in private schools. I even had this one member of administration question why my son always had to frequent this one men’s room on the opposite side of the campus, inferring that he was ‘up to something’. I told him that the reason that he went there for a break, was because it was an underused restroom and hardly anyone ever used it! That he had sensory issues, and at times when he started to become overwhelmed that he needed a quiet place to go to for awhile. Perhaps if they read and actually followed the instructions (very simple accommodations) that the neuropsychologists and psychiatrists had proposed, that they could make his school experience oh so much better! The public school wasn’t that much better- he had attended one public school (rather small public school) and made it only 32 days before he was placed on homebound instruction (he had an IEP which they didn’t follow). Of course, he was consistently under the care of a psychiatrist and I always had an attorney. It was a long, hard road to get him through school and graduated and it shouldn’t have been. We have a lot of failed systems in the education system and a lot of laws/regulations created simply for bureaucratic purposes. He would never have gotten as far as he did if it weren’t for the Sister’s (nuns) at his private school in NJ where he attended for the first 7 years of school. They never had an issue with implementing the accommodations that the neuropsychologist had recommended or showing my son care and compassion. The tragedy in all of this was that he was a victim (like many other children like him) of a failing system where so-called ‘professionals’ conducted themselves in an un-professional manner and really didn’t want to be bothered. I was asked, year after year, to please find an alternate placement for my son for the following year because he “consumed so much time in way of supervision and other” from their teachers. My son did graduate high school (I had to take him to an out-of-state private school) where he received the Physics award and then attended a private technical university (for engineering) where he made it through two years, consistently on the Dean’s list. He became a member of two honor societies.
Hey there. What a mess. And it brings to mind a friend in a different city (which was a bit north of the south) from where I live now in a previous decade where his wife’s job was a legal advocate for disabled children and her full time job was taking legal action against government schools to get those government schools to adhere to government law for disabled students. It was astonishing that the need for someone to do such a job even existed.
It doesn’t surprise me Scott. Someone I knew in a town in northern NJ, a public servant, actually had to sell his home and move to a different town because the school district refused to pay for his (clearly) disabled child to attend a specialized out-of-district placement. All of this, clearly outlined in section 504 where as the school district was obligated to provide F.A.P.E. (free and appropriate public education) but failed to do so. Certain towns (at least in NJ) would pay or wouldn’t pay and they forced the parent to hire an attorney and spend exorbitant amount of money for legal fees and in the meantime, the child is the one that suffers while the parents battle legally with the school district. I had attended some orientations at specialized private schools and found from talking to other parents, there were some towns that just paid for an out-of-district placement and wouldn’t bother fighting you. In the long run, at that time, it was just better for the child and less stress-full all the way around to just move to one of those towns. When I mentioned that I had to take my son out of state for high school, it’s because the school district that we resided in at the time wanted to place my son in either a room all by himself all day (can you believe the audacity?) or put him in this off-site “special” program. The program was a group of about 6-8 students with a teacher and they received the academics but not the full public school program and were awarded an “alternate” type of diploma. I never accepted the terms because it was so preposterous, and instead of wasting a lot of time with legal battles I found a very unique & appropriate private school out-of-state. The high school was private, had a total of 50-60 students over all four years, and some classes he attended had only 3 students. I bought a travel trailer and we went there! As I said, the laws in regards to the education system for disabled students are there for purely bureaucratic purposes. You have to hire an attorney and argue with them in almost any instant where you know they are wrong. A lot of parents don’t bother to spend their own money to take their children for private evaluations with highly skilled neuropsychologists they just rely on what the child study team at the public school tells them. When you pay for a totally private evaluation with someone highly qualified and is a specialist in the disorder, you get a much clearer and different evaluation then what any public school district’s child study team will tell you. These were all publicly (government) funded entities. Do you think that the government is going to make itself pay for your child if they don’t have to?
Re: “Do you think that the government is going to make itself pay for your child if they don’t have to?” While that question is probably rhetorical I’m going to answer it, although from a bit of a sideways direction: I became physically disabled almost 20 years ago and within the disability community there are people who when frustrated and even a bit angry, may refer to government health coverage as “Mediwedontcare” and “Medicaintnoaid”.
Emma, you have a gift for putting into words aspects of the autistic experience that are not always easy to express. Thanks–very helpful to read your post.
Lucy, I get where you’re coming from and everything you describe about Christianity is what kept me away from it for most of my life time. More recently, I’ve found a non-abusive version of Christianity that only adds to life’s meaning and value without taking anything away. It really is too bad that it can take many decades to bump up against the positive version.
In my case, what keeps me away from it is not believing that gods are a real thing, and not thinking that version of God is very convincing. Also, if I were to convert to a (monotheistic) religion, I’d be more likely to go for Judaism anyway, since that tracks more closely with the way I think. I pointed this stuff out, not because I am opposed to religion in general (I’m not) but because whether you’re religious or not, it’s important to look out for what toxic religions do, and not let what they do turn people to do bad things in the name of whatever deity the person claims to worship. And secular versions of that, which don’t have the deity but keep the scaffolding, can be nearly as bad in their own ways (and if practiced too much it can lay the groundwork for people to put the toxic god on top of it anyway).
Well Scott, I am very sorry to hear that about Medicaid and Medicare but it doesn’t surprise me. With these programs government funded you would expect to receive good quality healthcare but in fact, the opposite is true. In fact, since it’s funded by the tax payers the government feels that in the case of Medicaid, the patient should receive the barest minimum of services to treat the condition. However, I would want to believe that a child that is on Medicaid would receive very good medical services? As for Medicare, since we all financially contributed during the course of our active career years I would have expected more than what seniors are receiving! I believe the feelings are the same in regards to the Military as I had a friend that was quite disenchanted with her maternity care visit with the base doctors. She came back from her visit and had this long blank stare on her face as if something were wrong. When I asked her if everything was alright, she just said that she had a high expectation of the services she would get, but it was nothing near what she imagined. My reply to her was, “…look at how they treat our veterans and your husband may be in the military, but he’s not an officer.”
Hey Jan; Grandfather W was a Navy veteran enlisted. Dad, who turns 82 this month, is a Navy veteran officer. My brother is an Army veteran Warrant Officer. Two of his boys are Army veterans enlisted. One of his boys is active duty Warrant Officer. Grandfather absolutely distrusted the VA. Dad has had a lot of good care but some has left him wondering and left observers wondering. I’ve not discussed veteran health care with my brother or nephews. But my brother did smile and laugh at my “Medi …” phrasing. My defective body’s health was such that the military was not a career option for me. I did experience quite a bit of military dependent health care in the 1960s and 70s, which on the overall I would judge as average, but at this point on the calendar can’t give/recall much specific detail about.
Scott, et al; I wrote this for my son, but it’s for all who read this commentary-
You, are loved.
You are loved, just because you are you.
I wouldn’t trade you for anything.
We are all unique. That’s what makes life interesting.
How boring life would be if it was all the same.
Let’s celebrate being you, because you is great.
Aww, thanks Jan. As it happens, Dad’s birthday was today. I went with help from Hometown Homecare to do the 100 mile drive. They are shorthanded at the moment so it was the manager herself who drove. We talked about autism on the way back home: mine; the 2 kids in her son’s school class; and, that after meeting my parents about 8 years ago my Psychologist said Mom is definitely on the spectrum. Bonnie said that of course the stereotype had her thinking probably Dad, but no, the actuality turned out to be Mom.
A few months later after Dad vented some frustrations with Mom while we were waiting in car as she went in somewhere to do something, when Mom got back I waited a bit then said, “You remember when y’all went to see Bonnie with me, she says Mom is also autistic.”
Which is not astonishing given the under-diagnosis of girls and women.
It took a little while for Mom & Dad to accept that but even though at this point on the calendar I don’t remember the details, I can say that it did help them.
I was diagnosed as an adult, about a decade and a half ago.
Speaking of being loved …
At the same time as accepting that none of the 4 of us have ever been perfect people, there is much love between Mom, Dad, my brother, me.
There are plenty of times we have said between us that yes, we aren’t perfect, but we sure wish some families we encountered through the decades could have what we have.
I took for ‘show and tell’ 2 current builds inspired by the rubber band powered balsa wood submarine I built in 2005 (took it too for comparison) after procrastinating more than thee decades about building the simple one in a book parents got me when I was in 4th grade in the 1970s. But in holding off I was able to build a much better detailed and much better operating model!
Dad took pictures of my models.
My brother had driven in from Tennessee and brought some of his clothing he’s made for the American War of Independence reenacting he does.
The grumpy old retired Army non-com has turned out to be a well skilled tailor, the guy is GOOD!
Other than shoes and tricorn hats he now can make whatever he needs.
He’s become good enough that he’s doing occasional work for pay, basically using some of the hobby to fund some more of the hobby.
And then because of the ME/CFS I slept for several hours after getting home.
Dad was one of Navy’s first medical retirements with fibromyalgia and ME/CFS, and maybe even the actual literal first, after several years of high powered military doctors in Northern VA trying to figure out what is happening to this guy.
Then in 2006 those same things pounced on me from way out of left field and changed my life.
They hit hard and sudden and I went to hospital thinking I had a stroke or something.
Don’t remember if it was first day or a later day that Doctor looked at me and said, “Have you ever heard of a couple things called chronic fatigue syndrome and fibromyalgia?”
I looked up a the ceiling and said, “Ahhh SHIT!!!”
Doctor looked a me kind of funny.
I said, “Yeah I have. Let me tell ya about my Dad …”
Yep, life does what life does.
Such is life.