1 in 34? Uh, no shit. Uh, actually more shit.

On the Autism Speaks blog, there’s a post about parents having a 1 in 34 chance of autistic kids. No, not true.

It scares me that an organization so focused on research as they claim to be can’t manage basic math. But they can’t. Sadly I wasn’t surprised.

They use this logic: A new estimate for autism is 1 in 68. I admit I haven’t dug into this estimate much because, frankly, it doesn’t matter. If you’re autistic, that matters. If you’re not, it doesn’t. Sure, schools and politicians need to consider this number, it’s source, and it’s reliability. But the problem I have is that this Autism Speaks blog entry talks about how, for parents, it’s 1 in 34. Because there are two parents of a child.  So a parent has a 1 in 34 chance of being affected by autism.  Two parents, twice the chance.  Apparently.

Maybe this was tongue in cheek, but it didn’t look that way to me.

That said, even it if is, let me explain.  Let’s say I give every family, whether single parent family or multiple parent family a 6 sided die. I ask them to roll it.  What’s the chance of it turning up a 6? Oh, one in six. One sixth of the families will get a 6. Does it matter how many people watched the die roll? Of course not. If we take the 1 in 68 estimate as true, then a child has a 1 in 68 chance.

Ah, you say, what about a 2 child family?  Wouldn’t that be 1 in 34? Perhaps, if autism is evenly distributed among the population. However, we know it isn’t. We know there is a genetic component. There’s also tons of speculation that there is an environmental component. Regardless of whether or not environment plays a role, some families are more likely to have the genetics and the possible environmental factor than others. So, autism will tend to cluster in some families and avoid others. So, no, it’s not 1 in 34 for a two-child family.

This estimation of family impact also ignores the adults in these families – who also may be autistic. Yes, autistic people can marry, have sex, and produce children. And they do. Someone might not be able to envision their 3 year old having sex or marrying, but to be frank I can’t envision most 3 year olds doing that. If you want to accept the high prevalence of autism as a fact, you can’t then cherry pick and decide that real autism only involves people who won’t get married or have sex or have kids. You’re taking all of us, at least if I have anything to say about it, if you’re going to use us to raise money for your salary (check out Autism Speaks expenditures on salary and fund raising expense).

I’ll leave it to others to comment on the tone of the article – yet another, “Look at how much this affects people who aren’t autistic” article about “awareness.” It continues to focus on what the writer sees as the “lowest functioning” autistics (a label I reject being applied to people because there are not only two types of autistics, and much of the limitations “low functioning” autistics experience has little to do with their abilities but more to do with expectations and support). It talks about shit smearing (these types of people, focusing on how horrible things are for them, really do have an unnatural fascination with shit). I never smeared shit. Nor have most of the autistics I know! And, no, I don’t ignore people other than “highly successful” autistics. I know what your prejudice brings: most of my autistic friends can’t work, not because they lack abilities, but because we’ve built a culture that assumes disability is inability. I could explain more, but lack the time right now – but it’s in part due to the shit articles like this spread. Who wants to hire someone who will smear shit everywhere? It’s a lot of bullshit.

I’m sick of April. I wish the month would disappear. Autism Speaks has made it a month of awareness. A month where I will hear how horrible people like me are. Thank you, Autism Speaks!

Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

What Makes Life Hard?

I’ve learned something. What was hard for me at age 10 is not what was hard for me at age age 20 and was not what was hard for me at age 30.

At age 10, in the middle of the most difficult time of my life, I was bullied mercilessly. During the following decade, I was sexually abused, beaten, and humiliated. I was suicidal because of this. I don’t think it would be natural not to be.

At age 20, I was no longer bullied and I had actual, real friends! I had a place to belong. However, over the next ten years, I found three things difficult: building connections with other adults as they married and had kids; taking care of my personal needs (eating, etc); and dealing with my sensory issues. I spent much of my 20s learning, “OH! I don’t have to live with noise!”

In my 30s, I got married, but still have some disconnection with others. I’ve found the change between then and my 20s is that the sensory issues no longer are as huge in my life (thanks to understanding them and creating an environment which considers my needs) and my self-care is infinitely improved thanks to having a wonderful wife who makes sure I have food to eat (an amazing blessing). Where I find difficulty today is with work – as I’ve aged, I’ve gained more responsibility in my professional career – and that increases the social demands. There are different social expectations placed upon an entry-level programmer than are placed upon a senior-level team leader. I suspect it’s difficult for everyone, but it probably is easier if your team speaks your language (not English, but rather autistic vs. neurotypical).

What will be hard in my 40s? I have no idea. Life changes, and I’ve learned I am not great at predicting the future. I do know that since my 20s, my life has been a good one – I’ve been very fortunate to have good people surrounding me, good opportunities, and plenty of luck. That could change, or it could remain. Only time will tell.

Sometimes we need to take a step back from our worries about the future and concentrate on what we know about the now.

Hiring Autistic Employees

It’s all the rage for companies such as SAP to seek out autistic employees for software development or testing positions. But, when I read about this trend, I have mixed feelings. It’s an improvement from the charity model where we’re hired for, in general, only low paying jobs (link via NFB) or to do jobs that only exist as a form of adult day-care.

And I do think autistics can be good software people! I’ve worked in computers since I first started working and I do think my autism makes me a good worker – I think it gives me a different insight into how things work, a different point of view. I think it’s good for employers to recognize that.

So, people being paid good wages for software development or testing is a good thing. That said, I do get a bit nervous anytime a company starts seeking to specifically hire a minority group – often wages are less than the prevailing wage, a charge that has been leveled against the US software industry’s usage of foreign workers on H1B visas. After all, someone might be willing to take a less-than-fair wage if it is either more than they make in their home country or if it is in a location want to be at, but couldn’t normally achieve. In other words, the competitive wage market pays people less if they have a harder time getting employment (after all, not every company is is interested in H1B visa holders). Do you know who else has a harder time getting employment? Oh, yes, autistic people!

Now I’m not saying that SAP or others are paying autistic people less – I really don’t know. But it’s certainly something ASAN and similar organizations should closely monitor. We should not become a cheap form of highly productive labor (albeit cheap for SAP is nothing like cheap for Goodwill). So let’s keep the pressure on to make sure we’re treated right, not as a new low-cost employee class. But this is not the main thing that bothers me with the autistic employment programs.

There are other things that bother me more. First, most of these programs are “trials”. Rather than creating employment situations where employees with disabilities can succeed (often required under today’s laws for all jobs), the companies feel the need to prove that we’re not only productive, but that we’re more productive than other employees. What happens if we’re not? What happens to the autistic person who isn’t? Certainly, we have some extremely talented people in our community. But at the same time, not every autistic is going to be better than the average NT at software testing or any other random job.

That’s the second thing that bothers me. It substitutes the old “we can’t do anything” myth about autistics with one of “but there are geniuses among autistics” idea. While, absolutely, there are geniuses among autistic people, I suspect that we have tons of people who can work but probably won’t quite be considered a genius. They might not have a skill that closely aligns with a highly commercially valuable occupation, like software testing. They may be like anyone else walking down the street. They might be the greatest garbage truck driver in some sanitation company’s employ, but they might also be an average garbage truck driver! That’s not a bad thing – my guess is that most of the sanitation company’s drivers are average – and that’s plenty good to make good money for the company.

So I don’t like the idea we have to be geniuses. We shouldn’t have to be.

I also don’t like the idea that we can employee autistics as software engineers, but positions as garbage truck drivers are ignored.

But, finally, more than the above, I want to see all companies examine their culture and practices to see how they are excluding people from employment for reasons other than job skills. I don’t know if SAP’s internal culture is good or not (I hope it is), but plenty of software companies could expand their doors to women, LBGT people, older people (meaning “older than 25” in some cases!), and, yes, autistic people, by simply getting rid of some of the cultural garbage – as others have written. I imagine other industries could do similar things.

We don’t need companies to seek out autistic people to work. We’re not being denied jobs generally because we’re diagnosed autistic or we have “autist” stamped on our forehead, so we don’t need that targeted. We need the things that keep us from getting work targeted. Why not have jobs for people who have trouble working the 9-to-5 schedule, rather than calling that an “autistic” job (some autistics might need that change, others don’t, and certainly plenty of unemployed non-autistics would work if there was more flexibility in scheduling for positions). We’re being denied jobs because we come across badly in interviews, don’t fit the normal environment, are too much trouble to deal with, or we don’t fit the “culture.” We need the companies we already have, with jobs unfilled, to take a good hard look at their culture and learn to be a bit flexible with everyone. We need companies to quit forcing people into a certain mold (which typically has nothing to do with what they do – what does having a brightly lit office have to do with writing computer code, for instance?) and fight their employees over stupid stuff (like an employee that finds light painful). We need companies to look at their managers and figure out, “Are these people treating our employees good? Even employees that don’t socialize and interact the same way? Even employees that might need an occasional workplace adjustment?” We need companies to quit violating the ADA (in the USA; substitute your local law outside the USA) and other laws, and instead embrace not only the law but also the spirit of the law. We need companies recognizing that not everyone is cut out to work a 40 hour-per-week job, but that person that can work 20 hours is still worth hiring and not just outright excluding.

If you want to make work good for autistic people, and encourage autistic employment, here’s some things to start on:

  • Do you accommodate people who ride public transit and are thus sometimes late? Is your company close to a public transit hub? Do you have accommodations to help me get home if I stay late or work shifts?
  • How about medical care? Does it start on day one? Does it exclude any pre-existing conditions (thank you Obama for fixing most of that)?
  • Once a disabled person starts making money, they often will lose government benefits. If they lose their job, it may be a while before they can convince agencies that they are still in need. How can you reassure the disabled person that the risk of working for your company is worth it, that their life (literally) is not at risk?
  • Can I call in sick because I’m overloaded? Can I go home early for that reason?
  • Speaking of health, what if I’m not perfectly healthy? What if I need more than the typical amount of time-off?
  • How am I going to manage my home, personal needs, and work? A neurotypical person might struggle with this, but an autistic person exhausted from work may go home and straight to bed – without dinner – because of the stress. You might say it’s not your problem, but it is what keeps some of us from working!
  • How about communication and meetings. Is your culture meeting-centric? Can it handle someone that needs space and quiet? Do I really have to go to 6 hours of meetings a day (like many technology people, for instance)?
  • Is it okay for me to skip the company social events? Or do I get pressured to come lest I not be a “team player”
  • What buzzwords are you into? (For software shops, I’ll give a hint: agile isn’t necessarily enjoyable for anyone, but particularly not for many of us)
  • If I complain about noise, light, or smells that don’t bother any other employees, will you believe me and do something about it? Or will you tell me that you don’t have any way of fixing it? What if I end up needing a private office (you know, that mythical thing with a door)?
  • How does your training work? What if I don’t learn the same way that the other 99% of your employees learn? What if I need to you to train differently?
  • If I am getting bullied by coworkers or a boss, will you do anything? Will you do it before I have to go to HR? Will I get penalized when I do go to HR?
  • Do you expect me to do the job just like everyone else, even if one part of the job is something I’m really good at and another part is something I’m really bad at? Or can I be put in the position where I’m doing what I’m good at without failing at the stuff I’m bad at?
  • Can you assign me work in a clear way? If you expect me to use “common sense” meaning “figure out what I should have told you,” I might not do great.
  • If I’m overloaded or provoked, and do something unusual but not dangerous, are you going to react in fear and consider it a safety risk, or are you going to actually figure out what I need to succeed?

I’m sure there are other things. But these things do matter. And, yes, they are complex. It’s hard to do this.

But let’s focus on that. Instead of finding the autistics that fit well into your culture and advertising the “autistic friendly” jobs, let’s find ways to make the culture inclusive of as many people as possible – including the autistics that have the skills and desire to work, but can’t get in the door anywhere. These aren’t the easy-to-hire autistics who can fit into a standard 9-to-5 office environment (sorry, we have an 8-to-5 environment in most places) but also the people that can’t find for all sorts of other reasons – not because the word “autistic” is on their resume, but because they interact differently socially, have sensory differences, don’t typically multitask great, and may have skill patterns with a different set of peaks and valleys than typical employees.

Hopefully SAP and others are doing that (and if so, I am thrilled!). Let’s hold them accountable to make sure.

Have you considered welding?

I was a horrible student in school.  Most of my schooling involved me barely passing the required courses.  I had a tremendous range of grades and a rather strange mix of classes.  For instance, I had to retake freshman English and world history (and some others).  Yet I was in advanced placement math.

My teachers had no idea what to do with a student like me.  Or, rather, most of them didn’t.  So I ended up failing courses that should have been easy – English for instance.  I love reading, and have learned to love writing.  I’m fairly good at both.  Yet, I flunked basic English not because of lack of reading or writing ability, but simple lack of executive functioning combined with a way schools have of taking something that kids have natural talent at and turning it into a boring, dull subject.

That’s the first problem I had with school.  It didn’t help that I was getting the shit beat out of me, I was incredibly lonely, and was suicidal during most of my schooling.  But, ultimately, even if those things weren’t happening, I didn’t do good with school.  My college career, bookmarked by 4.0 GPAs during my first and last semesters  was pretty lackluster.  And college was a very happy and enjoyable time for me, so I can’t blame that on the abuse and depression.

I was plenty capable of doing well in school academically.  As I mentioned, I did great at the beginning and end of my college career – even with difficult classes like engineering physics.  And I did good my last year of high school, but we’ll get to why later.  But, in general I couldn’t do it.

The first reason I didn’t do well was simply executive function.  My ability to maintain a schedule and keep up with homework is variable.  Sometimes it’s relatively easy (at least as easy as it is for anyone).  Sometimes it’s very, very difficult – even impossible.  I just can’t finish, sometimes can’t even start.  That’s the autistic inertia you’ll see autistics, but not professionals, talk about.

Sometimes, through sheer willpower, I could overcome that – at least for a time.  But, inevitably, there’s a crash coming soon afterward.  From my experience, I can keep it up for about a year, if there’s tremendous motivation.  But no more than that.  That’s why I did good my senior year of high school (4.0 there, but not other years, as I graduated “in the top of the bottom quarter of my class”).  But I had some significant motivation.  I had two things that year – a mentor, which I’ll get to in a bit, and my parents’ help.

My parents helped (actually my mom) by making a deal with me.  “I’ll write you a note to get out of school anytime you want, for any reason, if you bring home A’s on your report card.”  For a kid who faced abuse at school, few things can motivate as much as getting away from ones’ abusers.  Now I don’t suggest that we abuse autistic kids so that we can give some motivation in the form of getting away from abusers.  But for me, this was exactly what I needed.  I needed a break.  And it wasn’t just from abuse – it was from the stress of the routine, that I simply couldn’t maintain.  I could do my burst of energy and activity, then take a day or two off from school.  That helped.

My mentor was also a huge help – for two reasons.  She was the computer instructor in the school, at a time when my school was one of the first schools in the world getting hooked up to the internet.  Because hooking schools to the internet, particularly in a rural area, was pretty unusual, nobody had rules about how to do it yet.  So I got to run wires through the school, set up servers, and, in general, just learn how the internet worked.  This teacher saw that this was something I was interested in, had aptitude for, and she could build upon.  So she turned me loose and took a huge risk with me.  She also told me that she would arrange for me to get out of any class I was doing well in if I wanted to work on the internet instead – once again, a great motivator!

What’s amazing about this instructor was that I never had her as an instructor – she saw me in a computer lab, saw that I had some interest in computers, and did what someone who loves teaching does – she taught me.  Not with formal lesson plans, which wouldn’t have worked well with me, but by letting me do something I valued.  It had a great side-effect of turning into my career (I’m employed today “making the internet work”), and has let me earn a good living for myself.  At my company, I’m the least formally educated person in my peer group.  That opportunity was available to me because of the experience  I gained, starting with running ethernet cables in high school.

Yet, while this was happening, I was getting career advice.  They felt all high school students should make plans for their future.  Fair enough, but horrible implementation.  Ever since I was 5, I wanted to program computers.  Once I was 10 or so, I knew I wanted to do computer security.  When I was 25, I was programming computer security systems – I was the only person I knew who was doing exactly what he dreamed of doing as a small child.  How many people end up in their dream job?  I’d consider that success.

So, I remember my career counseling.  I remember filling out worksheets to find out what I was “good” at, or what I had “aptitude” for – and finding out I should be a file clerk or mechanic.  I remember then talking to the actual staff, and telling them what I wanted to do.  The most memorable experience was one where I was told, “Computer programming?  That requires college.  I don’t think that’s the best choice.  Have you considered something like welding?”

Now, I have great respect for someone who can weld well.  I married a highly skilled welder!  I look at what my wife can do with a few pieces of scrap metal and am always amazed.  But I can’t do that.  Part of it is that I’ve never had training in welding – but part of it is that it isn’t what I have aptitude for.  I’d probably be able to become an okay welder, with enough education, practice, and time.  But I’m a good programmer, and much more helpful to society as someone who can practice his craft at that level than merely at the okay level.  Ironically, his comment about college also was wrong.  I finished college last year, about 16 years after I started it.  I never had a college degree when I was hired at a job.

That’s my problem with schools and career counselors.  Most look at the typical path from A to B.  I’m not typical.  I’ll never be typical.  I can’t do school and succeed the way my peers can.  But that doesn’t mean I don’t have things to offer the world, even if I might have to take a bit more twisty of a path to get from A to B.  Fortunately, some people saw my ability, and I had good mentors who helped me not with the technical stuff (although they did that by letting me loose on it!), but being able to engage me in my weaker areas while I was focused on my strengths.  I’ll write about that sometime, but this is long enough.

But in the meantime, I don’t want any career advice.  At least not from the system that thought it would be better to be an okay welder than a good programmer.  (for what it’s worth, I shudder when I think of the loss to society because others who would be great welders who are now just okay programmers – it’s a loss either way around)