Three Things You Don’t Know about Sensory Differences

Okay, maybe you do know these things! But I didn’t until college, and I still don’t see them talked about. So, here’s what I learned – which helped me cope with life. I’ll assume my readers know autism affects senses significantly, even if it’s often ignored in the diagnostic criteria.

1. First, there’s not just five senses! Sure, there’s touch, smell, taste (closely related to smell), sight, and hearing. But there is also things like the position of our body in space, our sense of hunger and thirst, knowing how the parts of our body are positioned (proprioception), sense of time, and others. Even senses that seem related aren’t necessarily – for instance, the feeling of pressure, temperature, and itch are actually distinct senses (heck, even pressure isn’t one sense, but at least two – light touch is processed distinctly different than deep pressure)! Any of these can be affected by autism or other neurological differences. For me, my internal body senses (Am I hot or cold? Am I hungry? Am I sick?) and proprioception are generally weak, but other senses are significantly more sensitive (light touch). Others might have more impact to their sense of time (common with ADHD), taste, etc. It’s important when looking into your own sensory processing (or that of a loved one) that you consider not just the senses you learned about in elementary school, but also all the other senses and their intricacies – and to remember one might be affected yet another might be typical.

2. There’s a difference between sensitivity and registration. For instance, a sound might affect an autistic person differently than a non-autistic person, because it causes the autistic person pain (and doesn’t do that for most non-autistic people). Yet, at the same time, this person who is in pain doesn’t always react to the sound. So an outside observer might conclude, “This person isn’t really in pain, because they would always be in pain when this sound was present if it was real. They are manipulative.” That’s not true! It’s possible for someone to be pain-sensitive to sounds, yet also have low registration. In other words, the sound really isn’t painful until it’s noticed, and the person may even have a harder time actually noticing the sound! This is not manipulation or deceit. Rather, it’s the way some people’s senses work. The converse is also true – someone might be high registration and notice things few others do. But registration and sensitivity are not the same thing – one is the sense reaching a threshold of affecting the person, the other is how much it affects the person.

3. Senses don’t always work in the way an observer would expect. I was thinking about this during the week, when I was riding a motorcycle. Why can I do that without problem, but I can’t help but bang into a table when I walk through my living room? It’s actually not complex, but it’s also not obvious. I have trouble with the sense of proprioception – knowing where my body is in space. Obviously, that’s important when walking around your living room if you don’t want to bang into things! It’s also important on a motorcycle, as you need to have a strong connection to the environment – and the positions of your body parts is pretty important for that! So, why can I do one, but not the other? It’s simple: I get lots of feedback from the motorcycle. It’s vibrating, I feel the wind, there’s bumps in the road, etc. In other words, I get lots of input – and with that input, I know where all the parts of my body are within space. Walking through the living room, I don’t get that input. So I knock over the coffee table! I suspect if we put my living room on giant springs, I’d be fine. But it’s not. So I’ll keep banging into things. But this is the important thing to realize: someone might see someone that walks awkwardly through their house and think, “The last place they need to be is on a motorcycle. They get hurt just walking. I can’t imagine what will happen on a bike.” They would be wrong, though – it turns out the bike may be safer than walking, because I get the input into my body to know where everything is. In a way, a motorcycle is assistive technology!

That’s in fact the key to all three points: how people interpret the world through their senses is not necessarily easy to understand, obvious, or predictable. But that doesn’t mean it’s not real.

Gaps in the ADA

Courtesy of the Durango Herald, we know about the plight of a disabled visitor to Durango, Colorado (USA). It highlights one of many gaps in the Americans with Disabilities Act, and shows how different lobbyists ensured loopholes existed in the ADA.

(note that the ADA is a USA law, so what I say here doesn’t apply to other countries)

In the story, you hear that taxi services aren’t required to be accessible (and some pretty disgusting comments from the owner of Durango Transportation, who notes “special needs require special services” after, in the article, explaining that a person using a wheelchair would pay $72 from his company to get to to town from the airport (an able-bodied person would pay $25). It should be noted that an advocate in the town said there was a different side to this and that local transportation companies were unwilling to provide any assistance. Another transportation company, Animas Transportation after mentioning an $85,000 cost for a van with a lift, said, “The additional costs of the liability insurance will make ‘your eyes water’.” which is yet another stereotype of the disabled that typically isn’t based in fact: that we’re a liability and safety risk (perception of higher liability insurance cost is also not a valid reason for discrimination under the ADA – that’s been fought in court).

I’ll note that the ADA prohibits the surcharge as described above, and it certainly does apply to Taxi companies. And while taxi companies are not required to purchase accessible automobiles (sedans), all other new vehicles purchased must be accessible (this link also talks about surcharges being prohibited). Big surprise, though: a business (or two!) that doesn’t think the ADA applies to them. It’s also interesting that transportation businesses aren’t expected to make their transportation accessible in many cases (buy used vehicles or stick to just buying sedans), but another business who isn’t a transportation company, such as a hotel, is required to be fully accessible if they provide a shuttle service. I have a hard time believing that a hotel faces less of a financial hardship to equip their shuttle van with appropriate lifts (or providing equivalent service) but a taxi company is unable to do the same – particularly since these same taxi companies may be contracted by private businesses to operate shuttle services (so you would think it would make good financial sense, if you want private contracts, to have at least one accessible vehicle!).

As an aside, kudos should go to Doubletree Hotels for having an accessible shuttle (as required by the ADA for a hotel shuttle – unlike taxis, hotels don’t get any exceptions for accessibility in their shuttle service) – apparently the only one in Durango. Unfortunately the man wasn’t going to the Doubletree. But it’s nice to see Doubletree is willing to sell their product to both non-disabled and disabled people, and comply with the law, since sadly many businesses are not. It should also be noted that the Durango and Silverton Narrow Gauge Railway managed to make their historical steam-driven train and facilities accessible, something that taxi services can’t manage to do.

Just what isn’t covered by the ADA, as far as public access? It turns out a lot. But we start with the two main categories of exceptions from Title III:

  • Private Clubs (basically anyone who can also exclude someone on the basis of race)
  • Religious Organizations

For physical accessibility, however, there are additional exceptions (this is in addition to the numerous exceptions in the design standards that say things like a toll road can build completely physically inaccessible tollbooths and then, because now a wheelchair user can’t access them, not hire people who use a wheelchair even if the user could otherwise do the job well):

  • Taxi service automobiles (sedans, not vans)
  • Houses (builders can build a 5,000 house subdivision without making even one house in the subdivision accessible, unless they have a sales office in a model home, in which case that one home must be at least partially physically accessible)
  • Air and rail transportation (these are covered by other laws)
  • Anything a State historical society decides couldn’t be modified
  • Apartment buildings in most cases
  • Homeowners associations in most cases
  • Most multi-story office buildings with less than 3,000 square feet per floor (physical access to space is not required)

I’ll also note there are many other exceptions, such as movie theater captioning (they don’t have to do that).

The ADA is a good law (and does apply to the Durango taxi services!), but it’s still has gaps that we need to continue to work to close. We aren’t done yet.

Why Self-deprecation is Ugly

Autistic people sometimes live a life where they are never good enough in the eyes of people important to them. Perhaps not “good enough” in the eyes of a parent, friends, classmates, or someone else’s eyes.

One response is to internalize this feeling of inadequacy. You believe yourself to be inadequate. So you express that. I understand that, I lived through it.

This is horrible for a person to feel. And sometimes there aren’t a lot of good ways to deal with this miserable life. You may discover self-deprecation. If you’re going to fail in other people’s eyes, you might as well be the person to say you’re inadequate – and beat anyone else to, getting a little bit of control. You can’t succeed, but you can take the words from others.

Of course this is not a positive thing. But understandable.

Where it becomes a problem is when it continues when the person can succeed. It then becomes not an expression of depression but rather of manipulation.

Yes, manipulation.

Once someone can succeed, the self-deprecation is now a manipulation. It can be used to get people to look at the person, give them attention, and even get others to give compliments.

It sometimes gets seen as humility (sometimes by the person acting in the self-deprecating way, sometimes by others). But it’s not humility. Humility doesn’t seek to gain control, while self-deprecation does. Humility allows someone to succeed and recognize their own success – self-deprecation actually draws attention to the success, by drawing other people into acknowledging the success. Humility doesn’t seek recognition, but self-deprecation attempts to pull out recognition from others. Humility is good. Self-deprecation is not (although sometimes it’s an understandable symptom of depression).

Self-deprecation attempts to control criticism. It seeks to get others to either sympathize with him (and tell him his being, attributes, or work are actually even better than they really are) or to see that he knows what is wrong and really is smart and able, just didn’t quite pull it off this time. Most people, being polite, will appear to sympathize outwardly.

Humility doesn’t control criticism. If someone says your work or attribute or being sucks, you analyze the truth of the statement and move past that. It allows for someone to point out a flaw you don’t know about. It also allows you to dismiss their opinion, if it isn’t well founded. Not all criticism is accurate, after all.

Simultaneously, self-deprecation not only controls criticism, but removes the need to act in it’s presence. You’ve already said it or you suck. So, what does the other person expect? You suck. You know that. You told them! If you suck, how can anyone expect you to do better? You don’t have to act, if you employ this strategy of manipulation.

Again, I think most people that practice this manipulation are doing it because of pain and hurt. They’ve probably had a horrible past. But, at the same time, it’s not always a good way of interacting with others and can become manipulative and ugly.

For myself, it took me quite some time before I could accept that a compliment was not just setting me up for abuse or humiliation. So I’d question a compliment, rather than accept it. Even when I was able to succeed, I’d deprecate. It was a bit of a habit and a bit of coping. But it wasn’t humble. It was still manipulative, even if it was developed as a strategy to cope with depression and horrible life circumstances. I needed to learn what was wrong with the self-deprecation, learn why I did it, and learn that, no, I don’t need to live in that way. I could be good at something. And someone else could tell me so – without me needing to set the stage about how horrible I was first. I could also be non-perfect, without the need to avoid all criticism by getting out in front of someone else’s criticism. I could just accept myself as I am (and recognize legitimate areas of improvement). And I could be wrong. That’s okay too.

When I continued that behavior past the places where I was being abused, and into places where I had plenty of positive feedback from others, it became manipulative. It could easily become ugly – a way to get people to do what I want them to do, while freeing myself from potential criticism. Not good. And it’s okay to not want someone to manipulate you in this way – that’s not abuse, it’s not wrong, and it’s okay to call out this behavior when you see it. It is bad behavior, even if it had a good reason. Just accepting it doesn’t help – it doesn’t help if it truly is a result of ongoing abuse (it instead facilitates the abuse – better to find the cause and get it taken care of!). Nor does it help if those things are long past and this is now just plain manipulation.

I’m definitely learning to live – and that a compliment may be just that. I may have done good! That part of my personality really might be good! And, yes, that criticism may even be valid (or not!). That’s all good. As I learn this, I learn that people’s opinions of me, while worth evaluating, are not what is important. Being as decent of a person as you can is important. Yes, you do need some positive input from other people. And too many autistics don’t get that. But at the same time, once that’s there, it’s freeing to recognize it and then let go of the need that is now met and to give up that manipulation of others.

How to Cope @ University

A Guardian article about autistics going to university reminded me how much we miss when we call autism a “social” disability – something that affects primarily our ability to interact.

Is autism primarily a social disability? NO! Autism is a bit more complex than that. No, a lot more complex.

I had problems in university. Some of them were social. For instance, my first week of school, I didn’t eat anything because I was too overwhelmed to ask where the cafeteria was – eventually my hunger got the best of me and I stalked a group of students at around dinner time. But going a week without food isn’t a good thing. And, yes, if I interacted socially like most people, I probably would have asked someone for directions.

Some classes focused on group work. I did pretty poor in those. I still hate group work, and avoid it at all cost. Fortunately, most of my teachers accepted this and let me do individual work. But I did pretty poor when they didn’t.

But, there is a lot more to autism than social stuff. I probably would have graduated from my first attempt at university if I had some non-social help. I didn’t need help with the subject matter, but I did need help organizing things and figuring out how to schedule my time. The university may be able to help students with that now, I don’t know. But it’s deeper than that.

In fact, the social part of university was the part I enjoyed the most – I had more friends during that time of my life than during any other time of my life! I could find people interested in what I was interested in. I loved that part of it – I had little trouble making friends (after the first week).

I needed help with daily life. Getting up in the morning, getting dressed, doing laundry, eating, organizing my room, paying my bills, etc. Of course most universities expect you to do that yourself. Maybe that’s fine, but if it is, then this help needs to be available elsewhere.

One of the biggest things that caused me problems was the avalanche effect. I could cope with a few flakes of snow. Or even a snowball or two. But, if you get enough snow at once, it’s deadly. If I got behind a little in my daily living areas, homework, self-care, etc, it would tend to push other things behind. Pretty soon, everything was behind. After a bit of this, everything was behind so much that there was no hope of catching up. I needed a chance to rest and recover sometimes. I rarely got it.

As an example, let’s say I had a hard day for any number of reasons. I end up going to bed exhausted, but after 8 hours or so of sleep, I might not be fully recovered. So it’s impossible for me to get up and get breakfast, and maybe I even can’t make it to that first class. Of course there is homework in that class, and while I have plenty of friends, I don’t have any in that class to find out what homework was assigned. Instructors aren’t very helpful when you say, “I slept through your class…again…” so you’re on your own. So now, I have something that is stressing me out (my homework), I probably have late or no marks for the homework I was supposed to hand in, and I still haven’t eaten any food or got to any class. The stress might keep me from my next class too, which compounds the problem. Then I find I don’t have any clean underwear to wear, since I forgot to do laundry yesterday when I was stressed out. So I have to go do that – and that’s two more hours out of my day. So I end up collapsing in front of the TV or computer game or internet. And now it just looks like I’m a lazy ass, so I’m not going to get any sympathy (or, more helpfully, HELP!) now!

Another part of the problem is that most 18 year olds don’t know what help they need, and most universities don’t know either. Sure, they have ideas, but they generally lack the flexibility and imagination – and perhaps even money, people, and ability – to notice things like, “Oh, it’s probably important that we find a way to make sure Joel can get food when he’s overloaded and can’t do the dining hall. He’ll have more success in school with that.” Or realizing that there is alternatives to group work that meet students where they are instead of where their peers are. Or eliminating some of the barriers students have to getting a degree inherent in the program.

For my program, I needed a foreign language. After I took Spanish I for the third time (and failed it), I gave up on that. And I gave up on the group-work senior project class, not because of lack of ability to do the work but because of the incredibly strange way the professor wanted us to work together. Then there was certain progressions that were expected, but maybe I missed or had trouble with one part of it one semester – and the next semester, the same course wasn’t offered, but I also couldn’t progress with the rest of my class.

If we can’t even get the flexibility we need with the aspects of the program that are 100% under the control of the university – course progressions, general education requirements, and course structure – there’s little hope for us when it comes to daily living and coping with overload.

It doesn’t help when you yourself don’t know what you need to succeed yet.

Here’s what we need (and I’m sure there are others);

  • Daily Living Support – we need to meet our own needs for food, shelter, self-care, home organization, financial, and administrative stuff. There should be a way for students who could excel in their field to still excel in their field, even if they have problems with these areas
  • Structured Flexibility – I needed deadlines to get work done by. But at the same time, I needed exceptions and flexible schedules. And I needed a lot more than most students.
  • Creativity – how can I demonstrate my growth? How can I learn my field? There’s not just one way!
  • Crash Time and Space – I need a place to escape, rest, and relax. If I don’t get this, then everything else crumbles around me. A noisy residence hall is not an escape – it’s tremendous work.
  • Academic Support – this was the least important thing for me. These are the accommodations universities know how to accommodate the best (which is still often pretty awful). This is things like note takers, testing environmental accommodations, tutors, etc. I don’t know much about this because it’s not something I needed.

I’m sure there’s others, and I’d love to hear other people’s thoughts.

Group Homes Refuse to Let Couple Live Together

An AP article, via Denver Post about a married couple denied the ability to live together shows a trend that has been happening for years.

I’ve written about it before: here, here, and here. Disabled people aren’t supposed to be sexy. We gross (some) normal people out. (ironically the same reason gays are in the middle of a fight for their right to marry)

Here’s the essence of the story: two mentally disabled people got married. Her group home (run by Catholic Health Systems of Long Island) doesn’t believe she can consent to sex. His co-ed home (run by Independent Group Home Living) says they aren’t staffed to help them with aspects of their relationship, “sexual or otherwise.”

This isn’t new. As I wrote about before, group homes have for a long time felt the need to regulate intimate behavior in ways that a non-disabled person would consider a violation of human rights.

They get away with it for two reasons. First, is the idea that disabled people need protection from the world. Too often, this manifests as a set of dumb restrictions (such as “married people shouldn’t sleep with each other”) that don’t actually make anyone safe!

Second is the idea that disabled people having sex is gross, perverted, and just plain wrong. It’s the same reaction that a straight guy might have in his gut when he thinks of two gay guys having sex. For lots of people, it’s “icky” to think about having sex with someone with a disability. So, because some people can’t see how someone would enjoy being intimate and sharing life with someone, the target of their prejudice ends up being restricted.

It probably doesn’t help that Catholic Health Systems runs her home, either. The obvious outcome of sex is children – the only thing more scary to some than disabled people having sex is disabled people having kids. And it very well may be that the wife doesn’t want to have kids (she may want them – I really don’t know). But of course no Catholic-run group is going to provide comprehensive sex education, birth control training, or other basic sexual health care and educational programs. It’s supposed to be in God’s hands – well, unless they are disabled and then we’ll stop it.

As for the ability of her to consent, why couldn’t she? You have to do better than “she’s labeled mentally retarded.” Certainly a group home or really anyone else should be helping her if she ends up in a situation she doesn’t want. But she wants this and has asked for it. How much more consent can you get? I suspect it’s really codewords for “if they sleep together they’ll have sex, and then they’ll have a kid and we don’t want that.” And that’s a whole other problem disabled people face – their right to have children is routinely and too-easily challenged, even when they are plenty or more capable than other parents of raising a child (but I’ll add “having kids” doesn’t always follow from “sleeping in the same home”). And, no, I’m not interested in your story about your disabled aunt who couldn’t care for her kids so you took her child (I can give you stories about non-disabled people who can’t raise kids). I know there are people who are unfit parents, but there are also plenty of fit parents out there. And research agrees with me (go look it up yourself, and, yes, people have done a LOT of research on parents with mental retardation).

As for his home, which is arguing “married couples are too tough,” especially “sexually and otherwise” – get over it. You have a co-ed home (and I wouldn’t be surprised if sex and relationships are already happening there – do you not think disabled people seek these things?). Nobody is expecting you to physically assist with sex. Really.

I’m not going to get into too much of this, other than to say it’s a problem I’ve been shouting about to the mountain tops with pretty much no acknowledgement by any disability organization. Nobody wants to touch “people labeled mentally retarded should be able to get married.” When one of them does, they’ll get my support (hint: it’s probably good not to send me fund raising email until you acknowledge all our human rights). But until then, I will keep shouting.