Can Autistics … ????

Autocomplete on Google, for “Can autistics…” shows some common misconceptions:

Screen shot showing "Can autistics" being completed by Google with "love", "have children", "drive", "lie."

Screen shot showing “Can autistics” being completed by Google with “love”, “have children”, “drive”, “lie.”

I’ve done (and do) three of the four. I’m not particularly interested in kids.

A lot of autistics I know also do three of the four. Sometimes even the same three as myself!

I get sick of hearing people tell autistics what we can’t do. Or telling parents what their kid won’t do. Or, worse yet, autistics telling people what autistics can’t do.

Now, certainly, there are plenty of things we can’t do. There’s nothing wrong with that. But there is something wrong when someone says, “I can’t” (despite what you heard in primary school, there is nothing wrong with that). But too often, the “Autistics can’t” really isn’t a can’t, but rather a bad stereotype.

I don’t know of anything that every single autistic person is bad at doing. Seriously. I know of plenty that lots of us are bad at doing, and certainly plenty that I personally am bad at doing – but nothing universal.

Too often, these “can’t” things get internalized in autistic people. Because we can understand stereotypes. And we can internalize stereotypes.

I do love my wife, my dog, my friends, my family, and my God. I love them in different ways, but, yes, I can love and feel love just fine, thank you very much. Maybe I should – as most of us should – spend more time loving and less time doing other things. But I certainly can love.

I just got back from fetching my lunch, on a motorcycle. I can drive just fine – or at least it feels like I can drive better than all the other area drivers on the highway! I love pretty much all vehicles – I’m decent with cars and motorcycles, can do reasonably well with small motorboats, and have even piloted (as a student pilot) planes.

As for lies…well, I certainly lied about things I did when my mom asked, “Who broke the …?” Of course I didn’t break it. Even when I did. Sometimes I got caught. Sometimes I got away with it. Today is much the same, although it’s not lies to cover up property destruction, but rather more of the social type – things like knowing to say “You’re 6 months along in your pregnancy? I would never have guessed” rather than “Wow, that’s going to be a big baby.” And, yes, I can use my intellect and realize that one statement is a nicer thing to say to another person, even if it’s not always perfectly true – and I can choose whether to be an ass or not (now, I’m not saying every failure to socially lie is choosing to be an ass – I know sometimes I don’t know to lie about something or I decide that I can tell the truth without being an ass; of course I might be being an ass too).

For Children…go to an event where there are lots of parents who have autistic kids. Watch the parents for a bit, then tell me if you see any autistic traits among the parents. Certainly not all people with autistic traits are autistic, nor are all parents of autistic people themselves autistic. But there is plenty of parents that are diagnosed with autism – along with their kids. I don’t have proof (other than an understanding of biology), but I’m pretty darn sure that I could have kids if I wanted. I don’t want kids, just as many non-autistic people don’t want kids. Plenty of other people (both autistic and not) do want kids. Again, the stereotype fails.

We’re all unique. We all have strengths and weaknesses. Sometimes we are surprised by our weaknesses (not all of us autistics have encyclopedic knowledge of Star Trek, for instance!). Other times, we’re surprised by our strengths (I know autistics doing very non-stereotypical things). But, more often, our strengths surprise others in ways that a neurotypical’s strengths wouldn’t. Too often, we’re not allowed to be good at things or we believe the lie of a stereotype when it’s told to us. That is a problem. It’s a sure way to create a “can’t.”

What is Wrong with the “Is FC Real?” Debate

It’s asking the wrong questions. It’s that simple.

The question that it’s asking, typically, is, “Are all instances of FC (Facilitated Communication) true communication, or are they all bogus?” Typically, at this point, some FC detractor will pull out some study about how it demonstrated there was no communication from the FC user, but rather from the facilitator.

But let’s back up. What is FC? FC is a form of AAC (Augmentative and Assistive Communication) that uses the touch of another person or the support of a wrist by another person while the communicator (who typically does not talk) types or writes something. The controversy arises because someone holding the wrist of another person can obviously move that wrist, possibly typing their message yet claiming that it is the words of the person who doesn’t talk.

There’s several things I’ve seen people try to say about FC.

First, many people say, “FC shouldn’t be used. There are lots of computer programs and ways to communicate other than FC. One of them should be used.” I agree, when this is possible. FC immediately draws a user into a controversy, and his words are immediately suspect in the eyes of many. For that reason alone, it’s good to have a way that is less controversial to communicate. But the next question is whether or not such a way exists for the communicator. There’s a bit of an assumption that anyone can type/point/whatever without physical assistance when it’s assumed other means might exist. Not everyone is the same, and even though someone’s differences might be incomprehensible to you, it doesn’t mean those differences aren’t real. But, yes, when possible, other means should be used. I believe the FC community agrees with this and there is no controversy here.

Next, some people say, “FC is bogus because person X or study Y showed it to be.” Of course one person or one study just says things about one person or one study’s population, not necessarily everyone. Yes, some studies claim FC is false on the basis of studying some people who participated. There are critiques on some of these studies, but even if they do show what they claim to, it’s still possible that someone, somewhere is truly communicating with FC. I find it amazing that it’s okay to dismiss the potential for communication in someone else – and take away their voice – on the basis that someone else (or a lot of someone elses) was not truly communicating their own words.

The third thing is that there is an assumption about the intelligence and ability of people who have certain patterns of disability. Some people simply find it hard to believe someone who doesn’t talk, who needs full-time assistance, who doesn’t type independently, etc, could possibly have intelligence or things to say. It is surprising, which is why I think FC has received so much attention over the years, from both supporters and detractors.

Now, I know some FC is real. I can say this with certainty, because I believe it should take extraordinary evidence to question someone’s own self-reports. And there have been self-reports by former (and current) FC users that make it clear it is real communication. I’m not talking self-reports using FC to validate FC, but rather self-reports from people who now or also communicate through other means. If someone tells me, using speech, that their FC is real communication, I’m going to believe it unless I have extraordinary evidence to the contrary. Some names to look up (just two now, but there are more): Lucy Blackman, who now types independently and talks about how when she used FC, it really was communication; Sharisa Kochmeister also now types independently and supports FC.

I also think the “Is FC real?” debate, in addition to ignoring the voices of those who clearly know if it can be true communication and today communicate without any controversy, also ignores the real problem with communication and autistic people: influence. How many autistic people can truly communicate independently? Do you say the same thing with your mom in your room that you might say to a close friend (with mom nowhere nearby)? Now, imagine that you are always, in public, with a certain person. And imagine that this person is an abuser. What’s the chance you’re going to report abuse? Pretty much zero – you’re not going to do that in the presence of the abuser. That’s influence. Let’s go further and say that the only reason you don’t live in an institution is because one particular person is your support person. Are you going to say anything bad about that person, even when they aren’t around?

In addition to well-publicized apparently false allegation of abuse communicated with FC, there have also been real allegations – substantiated by FC and other evidence. It’s scary to me that abuse allegations by an FC user are now automatically dismissed (and also that unsubstantiated equates to false allegations in many people’s minds – that’s terrifying as well).

Influence, whether it’s someone moving your wrist or someone preventing you from speaking about abuse is influence. It can be done even without the person in the same physical space. Yet, this type of influence – which is exceptionally common for autistic people (too many of us do not have support systems that include enough people to continue to have support if one person left) – is pretty much completely ignored if the person types or talks “independently.” Yet we’re talking about things like reporting abuse. People need to be able to independently communicate. But the debate on FC has made us believe that “independent” communication can exist for someone who cannot truly communicate freely, due to dependence on or presence of another person.

It also goes the other way. I find I can express myself much more clearly and strongly with certain people around. So it’s not just a matter of getting us alone. It’s actually complicated.

We need to think a bit more broadly in this debate. It’s not black-and-white, no matter how nice it would be if it was. Sometimes, I might not know if someone is communicating independently using FC. That’s okay – particularly when the absence of that communication would have me listening to the person facilitating to represent the communicator anyhow! But I feel it can be an even worse error to immediately discount someone’s ability to communicate, when any possibility exists that they really are communicating. I also think we need to think long and hard about influence – and not just physical manipulation, but the emotional and social influence of, in particular, caregivers on autistic people. And we need to remember not everyone shares our abilities or situation.

I still hope for the day when every autistic person has ways to communicate with minimal influence (nobody in society communicates with no influence). That’s what we need to focus on.

Just Expressing My Feelings…Let Us Hate Things Together

The comments in an article on Autistic Hoya’s site, “My Heart Breaks for Your Child,” got me thinking about how often people, when called out about awful things that are said about someone simply respond with something like, “I’m just being honest about my feelings.  I can’t help the way I feel.”

Feeling a certain way doesn’t make that thing either true or right.  If I felt that I was in danger when a hispanic family moves in next to me, that doesn’t necessarily mean that I am actually in danger (heck, I might feel safe if a white family moves in next to me, but they might actually be mass murderers).  In this case, racism is racism, even if a person is a sincere racist (really, is there any other kind?).

Maybe people who experience racism prefer people to be up front about their feelings and hope racists tell the world about their racism.  I don’t know.  But even if people prefer this, I can’t imagine that makes them like the racist, nor does it take away the ugly part inside the racist.  Even if the racist is honest and sincere.

The most common way this is expressed in the disability world is a parent (sadly, it’s often a parent) who says, “I wish I didn’t have a disabled child.”  There are two things here that need to be deconstructed a bit:

  1. Most of the time they do have a disabled child.  It is the child they have, and to not want a disabled child is to not want their child.  I can hear the screams of some readers now…”But that’s not what I mean!”  That’s fine.  I can understand that sometimes you might use the wrong words.  Now you know how your words come across, so please choose different ones.  But if you insist that these words aren’t what you mean, but continue using them, don’t expect sympathy from me.
  2. Getting past not wanting a child, what many people mean by this is that they don’t want their child to have the bad things that they associate with disability.  Fair enough – who would want any child to have bad things?  But the problem here is that you’ve confused disability and bad things.  Also, you may consider disability-associated traits from a perspective of a non-disabled person and make assumptions that aren’t actually valid from the perspective of a disabled person.

I’m not going to focus on the first point.  I don’t think most parents saying they don’t want an autistic kid (or a kid with another disability) are talking about the first point.  Generally, I’m not going to question most people on whether or not they want their child – I assume they love and cherish their child, even if they say stupid things.  But, I do ask for more precision in language however, as, sadly, there are parents that are selfish enough to neglect and abuse their disabled children because they – the parents – don’t like the impact of the disability on the parents’ lives.  I hope most parents don’t want to accidentally be grouped into that category!

So I’ll focus on the second part of this.  Your feelings if you are talking about not wanting the bad things associated with disability are an expression of your beliefs.

And it’s these beliefs that concern disabled people – because you’ll be making many, many decisions on the basis of these beliefs.  If your premise is wrong, your conclusion is going to be wrong.

Let me talk about some of the bad things that parents who say they don’t want a disabled kid mean when they say they don’t want them for their kids.

  1. Medical Issues: A child might have severe medical issues, either associated with disability or not.  For instance, a child might have a heart defect that could kill them at a young age (the child doesn’t need to be in the typical categories of disabled to have this, I might add, but that’s not really relevant here – I’ll grant some disabilities make this more likely).  I can’t imagine what it’s like to be worried about your child dying.  I wouldn’t wish that for anyone.  So, yes, I agree, that’s a fine thing to wish your child didn’t deal with.  But focus on the medical problem, not disabilities as a whole.
  2. Social Stigma and Prejudice: A lot of disabled people are badly treated by society.  This, too, is a fine thing to wish your child didn’t have to deal with.  Note however that this isn’t your child’s characteristic.  He is the victim, not the one that needs to change.  When the desire of a heart is that a person not be disabled so they won’t be mistreated, that expresses a subtle prejudice that considers the victim’s treatment inevitable if the disability remains – and inevitability means that it’s not worth trying to change things.  It’s not inevitable.  We can make the world a better place.  You don’t wish a woman who was raped was instead a man, so that she wouldn’t have experienced this horrible crime against her.  You instead wish that all men would treat women decently, that women would see justice when that doesn’t happen, and that society would take the problem seriously.  And your hope might even spur you to action, since there is no hopeless inevitability here.
  3. Loss of Opportunities: It’s also fine to wish a child had an opportunity that would be appropriate to them.  Sometimes we don’t get the chance in life that someone else might get.  This is true for all of us – maybe that company doesn’t ask you in for an interview after receiving your resume, even though you would be a great fit.  Or maybe you don’t meet up with the perfect spouse that is out there, just not where you are.  When the loss of opportunity is related to prejudice, see #2 above – it’s not the disability, it’s the bigot or prejudiced people that are at fault.  But there are two other possibilities too.  First, your child might have dreams that are unfulfilled because your child lacks the ability to fulfill those dreams, even if opportunities were given.  I’ll talk about that in #4.  Second, what I’ll talk about here, is that sometimes the lost opportunity isn’t necessarily something that the child wants.  I’m sure my dad, before I was born, pictured himself playing all sorts of sports with me.  But I’m pretty darn unathletic.  Not only that, I really had no desire to play the sports!  It was his dream, not mine.  And that’s nothing to do with my disability.  So wishing my disability away to solve it is, again, the wrong approach.  It’s his unfulfilled dream, not mine!
  4. Inability to Fulfill Dreams and Desires: I’m not talking about lost opportunities.  I’m talking about the dreams we might have that we simply will never accomplish, no matter how much we might try or how much society changes.  Unfulfilled dreams are, sadly, a part of all of our lives.  Someone might want to play pro football as a kid – but they simply aren’t professional league material.  No matter how hard they try, that dream will be unfulfilled.  For some people, that can be extremely depressing.  Part of the job of the wider community is to help people discover the things that match their aptitude, interests, and personality and provide the opportunities to pursue them, gently guiding people towards these incredible dreams.  It’s important to realize however how many greats were previously told that excelling in their field was impossible for them.  Just because I think someone can’t become a pro football player doesn’t mean I’m right!  But at the same time, how many people get to have the fairy tale life they dreamed of as kids?  Does that mean our lives all suck?
  5. Perceived Loss: I can’t imagine being blind.  I suspect a lot of parents can’t either, even if they have a blind child.  To me, thinking of losing my sight causes feelings of fear.  I think of how sad it would be to not do so many of the things I enjoy.  But, again, much of this is based on my perspective as a sighted person!  If I were to close my eyes (the best I can do to imagine the blind experience) and walk around my house, I’d break things (maybe even parts of myself!).  It would be hard.  I couldn’t get to work.  I don’t know how I would cook or take care of myself.  It would be exceptionally hard emotionally.  But of course that would be as someone with no experience being blind!  Someone who lives daily with being blind learns how to get around their house without breaking things (or themself), learns how to get to work, learns how to take care of themself, learns how to cook, etc.  Maybe some things need to be done differently, or maybe they need help that sighted people generally don’t (outside of rich people who have staff to cook and clean for them, anyway).  Of course maybe they don’t need the help that I, as a sighted person, would think they need!  Telling a blind person, “I wish my child wasn’t blind,” is saying, “My child has lost so much by not being able to see.”  That’s very likely not the blind person’s perspective – particularly if that person has accomplished many of their own dreams!
  6. I don’t want to suffer: Sometimes the parent saying this is, themselves, suffering.  They may lack support.  They may be depressed.  They may not know how they are going to get through another day.  Again, this is a problem the parent is experiencing, and that is where the focus needs to be – to help the parent, not to wish for a magical cure pill for the child.

Now, I know that there are plenty of disabled people who have internalized these messages and think, “If I wasn’t disabled, my life wouldn’t suck.”  They may even be right (although I doubt life would be as rosy as they might imagine).  But I think much of this comes from disability being a convient thing to blame for all the problems of life.   And of course these disabled people are brought out front-and-center every time this debate comes up, to show how my part of the disabled experience is invalid.  But, no, they also do not have the fullness of the disabled experience anymore than I do!  It’s only one element of the whole of disabled experience.

Nor is someone who hates their life and blames it on disability “more disabled” than everyone who loves their life.  Things don’t work that way.  Level of disability, however you categorize it, has nothing to do with happiness.  I think research here would be worthwhile – what makes a disabled person’s life better?  I say that because I see people who can do many things I can’t who hate their lives, and I see many people who can’t do many things I can who enjoy their lives.  It’s not about ability.  It’s about other things – probably the very things that matter to us all like a connection to other people (yes, even “profoundly” disabled children seek that, although it’s not necessarily recognized as what it is), a safe place to be, meeting your basic life needs, and the chance to pursue the achievable dreams.  None of this is helped by a parent expressing feelings that disability is to blame.

I know in my life, it’s pretty simple to figure out what made me happy and what made me depressed.  When I feared for my life from other kids, when I was being abused by other kids, when I experienced the shame and humiliation daily around other kids…well, I probably would have taken a magic cure pill had it been offered.  I hated who I was, after all.  Everyone (including teachers and other adults) told me that if I was someone else, I wouldn’t be experiencing this.  The victim was blamed. My disability was blamed.  I was blamed.  I imagine these people were sincere, though.

Do you know what happened when I left that town one day in the mid 1990s?  Every day – yes, every day – has been better than those days.  Even my worst day in the many years since is better than the days when I was facing that abuse.  I thank God, literally, that I made it and that I somehow retained some of who I am – my essence – through it all.

Now, I’m not saying everyone who hates being disabled does so because of bullying.   That’s not the case.  Nor am I saying my life is all wonderful and that all my problems are solved.  I still have plenty of problems.  I still have sad days.  I still have days that are miserable.  But I’ve experienced good days, wonderful times, and things that make me glad I’m alive.  No, it’s not because I’m less disabled than someone else.  It’s because I’ve had good experience and a full life.

So, when I hear disability blamed for misery, even if it is a sincere belief, I know that belief is hogwash.  It’s not about disability, it’s about other things.  Let’s hate those other things together.

Cognitive vs. Physical Disability

As part of current discussions on various laws, treaties, etc, regarding the treatment of disabled people, I’ve seen some discussion by people with physical disabilities who are questioning whether people with cognitive disabilities can or should live in the community – or whether an institution is a better place for them.

First, we need to define our terms.  Most people understand what a physical disability is, but the term “cognitive disability” is a bit harder to understand.  It is a broad term, and can include everything from dyslexia or a learning disability through mental retardation and psychiatric illness.  People usually draw a distinction between cognitive and emotional disability, but it’s still a very broad category – just like physical disability is.

One of the mantras about disability has historically been, essentially, that a physically disabled person may have a “broken” body, but has a perfectly working mind.  Of course this isn’t true – plenty of physically disabled people (who’s bodies may or may not be considered broken by themselves) also have other types of disabilities, including cognitive disabilities.  But, regardless, this is a common statement by people with physical disabilities.  It’s also common in people’s understanding and sentiments towards old-age.  How many times have you heard about someone having health issues, but heard “he’s still extremely sharp” or similar statements?  The implication is that as bad as health and physical disabilities may be for some people, as long as the mind is unaffected it is okay.  This of course means that there is a value judgement made about disabilities that affect the mind, typically without actually consulting those who have those disabilities.

Fortunately, this type of thinking is becoming less and less common among people with physical disabilities, probably due to increased visibility of the scope and breadth of the disabled community.  But it still exists.

A lot of people believe people with “broken” brains need 24×7, intensive care.  Many people believe (wrongly) that institutional care is 24×7 care.  Just because there is staff around, even at night, doesn’t make it 24×7, nor does it make it intensive care, nor does it make it one-on-one care.  People who need intense 24×7 care can’t receive that in many – if not most – institutions.  In most institutions, people are left alone and bored for long stretches at a time.  That’s not care, that’s neglect.

The reality is that most people placed in institutions do not need to be there.  Yes, I recognize that there is a place for keeping some people separated from society – but only when there is a danger that can only be mitigated this way.  Most people with cognitive disabilities are not dangerous.  They just need assistance in ways others might not.

For example, people who have cognitive disabilities might have trouble in some of the following areas:

  • Preparing meals
  • Shopping for essential, necessary items (like food)
  • Managing money
  • Completing paperwork and official forms
  • Scheduling and getting to doctor’s appointments
  • Driving and Transit usage
  • Daily grooming/bathing

Interestingly, the above list could also apply to physically disabled people, albeit for different reasons:

  • Preparing meals – motor skill issues, lack of accessible design (counters, sinks, etc, within reach)
  • Shopping for essential, necessary items (like food) – energy level, lack of accessible stores, lack of transportation
  • Managing money – Difficulty handling coins, bills, and checks.
  • Completing paperwork and official forms – motor control issues, ability to get to/from mailbox in an inaccessible residence
  • Scheduling and getting to doctor’s appointments – energy levels, accessibility of doctor’s office.
  • Driving and transit usage – inaccessible vehicles, poor scheduling of transit, space and logistical concerns around auxiliary aids
  • Daily grooming/bathing – inaccessible bathrooms and utensils, motor control difficulties, ability to reach all parts of the body

In other words, a disability – whether physical or cognitive – can affect essentially exactly the same areas of life, albeit in different ways.  And, just like with cognitive disabilities, there are all manner of abilities and lack of abilities present among people with physical disabilities – some live with only the traditional supports of society (like farmers who raise our food, which we need to survive but lack in ourselves the ability to raise), while others need intense, 24×7 assistance.

Most disability needs don’t require ICU-like 24×7 observation, whether cognitive or physical in nature.  They might require help at key parts of the day, and with key tasks.  Or, they might just need to be done differently, but still independently.

For instance, here’s how a hypothetical person with a physical disability might manage some of the tasks listed above:

  • Preparing meals – an accessible kitchen, electrical kitchen appliances, adaptive utensils
  • Shopping – shop-at-home services, accessible stores and transportation, sit-down shopping cart
  • Managing money – using debit cards, banking online
  • Complex paperwork – typewriter, computer scanner/printer
  • Getting to doctor’s appointments – accessible vehicle, accessible doctor office
  • Driving and transit usage – adaptive vehicle controls, accessible taxi, paratransit with good scheduling
  • Daily grooming/bathing – “roll-in” shower, adaptive razor and other grooming items

Of course these things won’t solve every problem, and sometimes the best solution to a problem is another person.  There’s nothing wrong with that.  But it seems people are a lot more creative when it comes to physical accommodation than cognitive accommodation.

Some cognitive accommodations for the same items:

  • Preparing meals – visual menus, visual recipe, simple recipes (minimize multitasking)
  • Shopping – shop-at-home services, shopping list (visual or written), shopping computer/tablet application (to keep in budget)
  • Managing money – specialized computer applications, “cash budgeting” or “envelope budgeting”, pre-defined shopping lists, auto-debit for routine expenses
  • Complex paperwork – simpler forms, copies of old versions of the forms (filled out), alternative processes (such as asking questions orally at the doctor’s office rather than requiring a form to be filled out)
  • Scheduling and getting to doctor’s appointments – pre-scheduled recurring appointments, taxi or good paratransit, electronic reminder devices
  • Driving and transit usage – electronic reminder devices, checklists, step-by-step directions (pictorial or written), good paratransit, taxi
  • Daily grooming/bathing – visual schedule, electronic reminder devices

Yet, for some reason, people can much easier accept someone who can’t fill out a form because of a physical disability than one who can’t fill it out because of the complex language or concepts on the form.  One is considered worth accommodating.  One is not.  But it doesn’t have to be this way.

Certainly, again, I’m not suggesting that non-traditional assistance is not required by people with cognitive (or physical) disabilities.  Obviously many people do need it!  There is nothing wrong with that, and I’m not suggesting that people should never need that.  But I am suggesting that the things people need are not always 24×7, 1-on-1, intensive care.  Sometimes they just need some help with some key tasks during their day.

There is one thing missing from most people with disability, one thing that never makes it to the lists like the ones I used above: participation in community life.  Too often, people with disabilities, whether in institutional settings or at home, end up sitting alone, lonely, and bored too much of the time.  While the internet has been a huge help to this (much as TV was to a previous generation), that’s insufficient.  Yet, other than programming without consideration for a person’s interests, desires, goals, hopes, or dreams, this is ignored or treated as baby-sitting.  I suspect solving this problem will take more support than most disabled people get today, and I’ll write more about it later.  But simply moving boredom, restrictions, and loneliness from an institution to a person’s own home is not progress – I’ll agree on that.

But I won’t agree that it has to be this way.

Mugged by Sound – from NPR

A Facebook friend shared an NPR story (and the video I’m commenting on) about a fictional autistic boy dealing with the noise of his city.

I’ve linked the video here as well:

I’m sure there are a lot of autistic people who can’t relate to that video, but I definitely can relate to some of it.  That said, I do think my own audio processing difficulties are a but nuanced and that an overly simplified view of this can confuse people who expect it to be a simple matter of noise.

It’s not about noise, or volume.  It’s about energy levels.  It’s about what I’m doing at the time.  It’s about whether or not there is “information content” in the noise.  It’s about whether or not I’ve had a break or have a sanctuary from the noise.

I don’t mind noise.  I do some noisy things, like riding a motorcycle.  I don’t mind power tools or a load air conditioner – at least most of the time.  But I do need a place that is safe to retreat to, which means less noise.  Even routine noises – like those depicted in the video – can drain people (and, from research and observations of others, I don’t think autistic people are unique here, even if the magnitude of our drain is different).  I can deal with noisy crowds in cities or airports with earplugs – that extends my energy significantly.

I can also deal with short-duration noises.  Someone running water for 20 seconds is fine.  Someone running water for 10 minutes can, if I’m not ready for it, or if I’m trying to do anything (such as read, watch TV, etc), is overwhelming.  The same with noises like that of a spool scraping against a bowl – a few scrapes are no big deal.  But if there is 10 minutes of scraping and I’m crawling up walls.

Layers of noise are a problem, particularly when there is information content in the layers.  By “information content,” I mean that there is some sort of meaning – it’s not just noise.  Music and talking have information content.  The sound of traffic generally doesn’t.  So, a restaurant with loud music and tons of people talking to each other is horrible.  But another restaurant with the sound of loud traffic – even if it’s the same volume – is not.  There’s something about the information trying to grab my attention, so when there is multiple sources of information – even sources I’m not particularly interested in, my attention is yanked every which way which is simply exhausting.

I need breaks occasionally.  When I’m listening to, for instance, a lecture, I can handle this if there’s some back-and-forth, some delay, something to give pause between points.  I probably am very similar to someone with ADD in this regard – short, clear points are fine, but a long complicated point without a map can be a problem.  A large part of this is my very poor working memory – I simply can’t hold much in that working memory  so hearing 200 details together to synthesize the whole in a lecture isn’t nearly as effective for me as hearing about the whole first, then hearing each of the 200 details individually.  You want me to do well in your lecture class?  Give me an outline before the lecture!  I suspect that’s one reason I don’t have the ability to keep up with social dynamics in groups – it’s all about the details and you’re left to your own to somehow juggle thousands of individual details to synthesize a whole.

Certain sounds when I make them are fine, but not when others make them.  When I make them, I can stop anytime.  I’m not trapped by the sound.  I can escape.  But that same sound made by someone else, doing nothing differently than I did, can be extremely overloading.  The keys are duration of the sound, my energy level, what I’m doing at the time, other sounds simultaneously occurring, and my ability to escape the situation.  Volume level has relatively little to do with it, although certainly the louder the sounds are, the worse this is.

Some examples – I already mentioned motorcycle riding.  Hearing the wind noise at 80 MPH is no big deal, even combined with traffic and maybe some music.  I encounter few things in life that are this loud.  But I can handle it fine, even enjoy it.  The only information content is the music (note I’m not saying the traffic noise doesn’t cue me into what is going on around me, but it doesn’t have the same type of information content).

I can operate power tools all day, even loud ones.  That doesn’t bother me in the least.

Every year at Autreat – an environment where people have a greater understanding of sensory issues, however, I face challenges.  This proves the point that one autistic’s differences don’t necessarily match those of another autistic.  Inevitably, there’s a crowd gathered near the sign-in table.  Typically there are several groups of people, all very (understandably) excited to see each other, so there’s typically a lot of volume in the side-conversations – sometimes even nearly (or actually!) screaming.  It takes every bit of my strength and self-control to walk through the room to the table, say my name, and get my registration items.  The reason is that there is information content in those conversations.  Even though I very likely can’t hear the conversations well enough to understand the words, my mind tries – whether I want it to or not.  This is pretty much the sound that is the absolute worst for me, and every year I experience at Autreat one of the worst assaults on my senses!  Of course there are other things going on too – typically there’s a bit of chaos rather than order (the registration might be late, or something may be missing, or someone at the table might not know how to do something).  I might also want to say hi to people and greet them, so I’m trying to do something different than what I’d normally do in such a situation, and I stick around.  And, importantly, I’m typically rather worn out after traveling, so I’m “out of spoons”.  Together, this makes it a huge, overloading, draining, exhausting, and painful time (I would definitely prefer a root canal as far as pain level!).  But clearly not every autistic feels that way, since typically it’s other autistics making the noise!  We are all different, after all!

In the Autreat case, another factor is not being able to escape.  There are two parts to this – firstly, I can’t escape because I need to register to attend Autreat, something I very much want to do.  So I want to get it over with – it’s not going to be easier in an hour, so I want to get through the stress as soon as possible.  Second, escape isn’t just hindered by external requirements or environment.  It’s also hindered by internal desires and feelings.  In some situations, escape may draw unwanted attention to me – probably not at Autreat though.  At Autreat, the motivation is still internal: I want to interact with people, I want to see people, I want to meet people.  And if I escape to my room, that’s impossible.  Sometimes I get lucky and someone there who knows me already recognizes what is going on, and we leave the room together somewhere at their suggestion – then I get the human contact I’m seeking and get to escape!  But of course asking for this is something that also hits internal barriers, which is why it needs to be at the other person’s suggestion – simply asking “can we go talk somewhere quietly” is expressing the very thing that makes me vulnerable.  When you grow up abused, you learn not to speak your vulnerabilities.

So it’s not about Autreat being a horrible environment or anything like that.  It’s about the complex interaction between the environment at Autreat and my characteristics, some of which are autistic, some of which are part of being an abuse survivor  some of which are energy and ability level at the time, some of which are internal motivations, some of which are just plain the way I am.

That’s part of what makes this hard for people to understand.  It’s not as simple as “Joel is autistic and dislikes noise.”  It’s “Joel has sound sensitivities which are subtle and unique, and not just like that autistic boy in your kid’s school.”  Because it’s unique, and because it’s seemingly contradictory and manipulative.  For instance, if someone is talking during a church sermon, it can be very overloading, even if they are very quiet.  But the reaction I get, even if it’s not spoken so plainly, if I express this is, “You don’t mind hearing that power tool, but a little bit of whispered conversation in church causes you to go into overload?  You just want to control the situation!”  Yes, control is part of it – control makes things easier to handle, for sure.  Because with control, there’s the removal of the stress of not knowing how to escape.  But this gets mistaken for manipulation:

This gives us one of Joel’s Laws:

 Any difficulty someone has that is not immediately understandable by another person is called “manipulation.”

Sure, autistic people can be manipulative.  Of course!  But just because someone wants something changed doesn’t mean they have a sinister motive.  They really might be suffering in a way that you don’t understand.