* I will be using the words: normal and wrong throughout this post, not because I agree with usage, but because I’m making a point. Please bear with me and feel free to use a hint of sarcasm as you read the words.
“You’re Not Even Trying!”
Wow, those words came back to me like a blast from the past! A couple days ago, I was communicating with my friend Lydia Tay who blogs over at Asperger Journey. She blogs from a teen’s perspective, and since I have a younger teen myself, her point-of-view is greatly appreciated! So, Lydia tweeted me in frustration about a few things, one being the difficulty in ‘reading’ non-autistic facial expressions and body language. Her question to me was if these issues were a part of autism, to which I and another replied that it was. And then out of the blue, Lydia hits me with:
“…how about appearing not to be trying when really we are trying hard?”
And for an instant, Lydia was no longer the teen - I was - then, younger still. I suddenly remembered back to being a child in elementary and middle school and the phrases that were thrown at me almost daily:
- “You’re being careless”
- “You’re not trying”
- “You’re not putting forth your best effort”
- “You’re not applying yourself”
- “You’re not working to the best of your ability”
- “You can do better”
In my mind all of these phrases, coated in others’ frustration at what they perceived as my carelessness, all added up to…
“You’re not good enough.”
And that’s how I spent my first 30-odd years. My self-doubt and disappointment grew as I did and bled over into every aspect of me. I perceived myself in every facet of my life as not being good enough, even when I was successful! When I read Lydia’s words, it made my chest tight with fear and put knots in my stomach. And I wanted to grab Lydia and hug her tight and let her know that I understand! And I appreciate her differences! And that I know she’s trying as hard as she can! Being that she is half a world away, I couldn’t do that! So she’ll have to settle for my post as a virtual hug! Honestly, though, no one should be made to feel that way, and Lydia is far from alone in her feelings and beliefs. Many of the Autistics I communicate with share similar stories.
Why is that?
Is it because our parents and teachers don’t believe in us? No. I don’t believe that’s true - not in most cases anyway. I actually think these phrases are laid upon us because they DO believe in us.
This will all make sense. Stay with me…
This is a new term I’ve learned over the last year. I had not heard of it prior to my Partners in Policymaking program, which I talked about here. For those of you who are not familiar with the designation, the following is a description from the Invisible Disabilities Association:
“The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions, learning differences and mental disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.”
This suggests that the disability is not openly apparent. Alright, makes sense, and is most definitely something I should be aware of considering Bella, Lexi and I all 3 have invisible disabilities! I’m not including Bas here because, although he has invisible disabilities as well, he has many visible ones that make others aware on sight that he is not typically-developing. Why am I separating us?
Because in many cases, people with visible disabilities are considered by their appearance.
My son who is extremely intelligent, funny and gorgeous - I’m his Mom (beaming) - is believed by some to be less intelligent and less capable upon introduction because he is non-speaking. Because difficulty with fine motor skills greatly hinder his writing, because he vocalizes suddenly and loudly at times, because he toe-walks, because he stims openly and with great pleasure! So if one speaks to Bas and he does not make eye contact or respond, he is forgiven without a word of explanation (and generally a look of sympathy… ugh, hate that!) because he is apparently disabled. The worst of it, though…
People expect less from him… Hate that most of all.
Well, What Happens When The Disability Isn’t Apparent?
Bella and I can make eye contact and we understand when it’s required. We however, do not relish it. Not to mention it’s much easier for us to attend if we are not looking at the speaker. We, too, have our stims but are able to control them - for the most part - when necessary. We are able to speak, write and walk typically - although Bella, at 13, has only just begun to do this. So by all accounts Bella and I appear to be non-disabled. However, sometimes when people speak to us, and we’re not on our game, they may experience some of the following responses (my explanations of each are in italics):
- No eye contact – if we know you really well, or if we’re not comfortable, you’re not getting eye contact
- Blank facial expression/lack of facial response in regards to emotions – I have read articles suggesting impaired mirror neurons – however I’m not a neuroscientist so I can’t comment on accuracy
- Abrupt responses – generally our responses are like this unless explaining ourselves or if we feel we need to make someone else comfortable
- Slower response/processing times – we have auditory processing issues which can make it difficult to process verbal input
- Irritability – social and communication difficulites can make understanding others frustrating and exhausting
- Biting, Chewing, Rocking, Pacing – these are our favorite stims and you’ll rarely see them, however there are times when we do them because it’s necessary/helpful and we don’t care who’s watching
You see Bella and I do not appear to have auditory processing issues, communication difficulty, sensory integration issues, difficulty following verbal instruction, reading comprehension difficulty, issues with face-blindness, stims, visual-spatial/depth-perception difficulty or problems accurately reading others’ facial expressions and body language. And Lexi doesn’t appear to have a visual processing disorder that causes her to read and write from right to left, bottom to top and with complete letter and number reversal, perception of letter/number movement, absence of space between words making reading difficult, problems in math because fractions appear upside down and equations backwards, dyslexia and sensory integration issues.
But we do.
And people treat us differently. Because of our appearance? No. Well, why then? Because upon introduction, we do not appear to have disabilities. So by all accounts, we should act… ‘normal.’ We should exhibit no odd behaviors or mannerisms. We should appear as our fellow-citizens, you know, ‘normal’ members of society. But we don’t. We do things differently enough that others stop and stare. For example, why does Bella go to her room when people drop by unexpectedly? She’s so rude! Right?!
Not at all. Actually, someone has just invaded her personal, safe space without warning and she is upstairs in her room coming to terms with it.
And me? I was called horrible names as a kid and well into adulthood: cold, insensitive, callous, hateful, unfeeling, hard, rude, mean, bitch… Because I didn’t act right. I didn’t respond to people in a way that society approved of. The worst part was, after a while, I actually believed the things said about me. I’d been hearing them for so many years and from so many different people, how could they not be true? It was never even considered that something might be ‘wrong’ with me. My first year in college, things had gotten so bad (anxiety, panic attacks, OCD, insomnia, migraines) I had various doctors appointments, panels of bloodwork, EEGs/EKGs, CAT Scans, etc… Nothing was found. So, all the things people said about me had to be true! Why?
Because I appeared ‘normal.’
Circling Back Around
It’s the double-edged sword of the invisible disability – in our case Asperger’s Syndrome. We appear typically-developing on the outside, however are far from it on the inside. It can be the reason a very intelligent person, who achieves years ahead in one (sometimes many) difficult areas, barely treads water or even fails in what others regard as simple concepts. Why would a person do this? How could this person care so little that he/she is willing to give up rather than apply him/herself and excel as they do in other areas? It’s obvious isn’t it: Because they’re not trying! It’s a subject that’s not in their area of interest so they’re exerting as little effort as possible to ‘get by.’
Invisible disabilities can be invisible to everyone - even the person with the disability!
I was an undiagnosed Autistic for 37 years. In school I had problems with reading comprehension, following verbal directions, math word problems, attending in class, etc… All of this was compounded by my difficulties with auditory processing, sensory integration, communication, reading/understanding social cues, interacting comfortably with others and so on.
And I had no idea I had a disability. No one did. Because I appeared ‘normal.’
I grew up listening to adults tell me that I wasn’t trying, I wasn’t applying myself, I was being careless… Well, you saw the list at the beginning of this post, you know what I mean. And it was damaging and difficult to recover from. I still have difficulty accepting that I am good at something. I have people tell me I am, but it’s difficult to discern whether they mean it or they’re just being nice. You see, as a child, being told by the adults that matter so very much in our young lives (e.g. parents and teachers) that we aren’t trying, when in fact we can’t possibly try any harder,
It’s Not Your Fault
I’m not blaming here – My Mom loves me dearly and all my teachers did, too! I don’t believe for one second they were trying to hurt me with their words. They were not saying these things to ‘keep me down’ as it were. They were saying these things because they believed in me and were beyond frustrated at my carelessness! They continually chided me for not trying because,
They knew how smart I was.
How could someone so smart not complete the simplest tasks?! They had observed my strengths (spelling, vocabulary, language, foreign language, science) and heightened intelligence, therefore my inability to solve the simplest 3-step math word problem was obvious laziness. This was back in the 1970s, there were no invisible disabilities back then (good-humored sarcasm)!
So why didn’t I say anything? Why didn’t I tell my Mom to back-off when we engaged in ‘math-war’ every night during homework – both of us yelling, and me in tears?! (Note: My Mom is one of many accountants in my family, so my inability to excel in math was impossible for her to process). Why didn’t I explain to my teachers that verbal information once inside my head fell apart, words floating about willy-nilly as I scrambled to put them back together to discern what was said to me? Why didn’t I tell my teachers that when I read a sentence, the structure broke down and I was unable to remember the words, the order they were in or what I was reading about? Why didn’t I tell them the fluorescent lights were so bright and humming so loudly that I couldn’t concentrate? Why didn’t I tell them that the noises in the classroom were just as loud as the teacher speaking and that I had difficulty listening and paying attention?
Because my disability was just as invisible to me as it was to them.
I was born this way. Any defecits I had were not learned difficulties, I was born with them! I never knew what it was like as a young child to read and comprehend. I didn’t know what it was like to be able to listen and follow instructions. I didn’t know what it was like to sit in a classroom and not have my senses bombarded with light, sound, touch, etc… So when my Mom or my teachers told me that I wasn’t trying hard enough, of course they were right! Weren’t they?
No. Because if I had tried any harder my brain might have actually exploded or spontaneously combusted right there on the spot!
Ever notice these neurodiverse little kids tend to be exceptionally bright and talented?! I’ve got three of them and I witness their abilities daily. And I talk with you parents and teachers a lot. You kindly share your stories with me, so I know my kids are not the exception to the rule. In our home we work with twice-exceptionality, invisible disabilities and visible disabilities. One thing I make sure of, and I’ve caught myself a time or two because I’m human, is that I don’t utter the words:
“You’re not trying!”
Easy for me does not spell easy for my kids. And I can assure you, the same works in reverse. Sometimes I nod my head with a knowing smile at something they’ve shown/told me. Why? Because I can’t let them know yet that they know more than me, lest I become obsolete! And I always privately Google whatever they tell me so we’re all on the same page - no harm no foul!
These neurodiverse minds are a wonder. They are amazing in their differences because they defy the laws of ‘typical!’ They can be erratic, brilliant, eccentric, delayed, advanced, disabled, typical and exceptional. And they can be ALL of these things…
At the same time!