Take an Autie to Work Day

:
How Today's Autistic Workers Negotiate the World of Employment

A Word About “You”
Throughout this presentation, I will use the word “you” as a stand-in for “the autistic person,” although I know not everyone viewing this webinar will be on the spectrum.

The Basics
• Most autistic people would like to earn a living. • Most autistic people (who are not permanently and totally disabled for other reasons) could earn a living, or at least work part time, with the proper accommodations and supports. • Most of us don’t get them. • Let’s talk about why, and what we could do about it.

Most autistic people would like to earn a living.
But… • …we can’t just take any old job and made it work • We like other people with disabilities need accommodations .

Don’t do this…unless you really, really have to, and I really, really hope you don’t.
• I have spent most of my life underemployed • I have tried desperately to hide my true self for fear of being found out, and doing work far below my skill and educational level. • Eventually, they have found me out – i.e. they figured out I’m not neurotypical, even if they didn’t understand exactly what was going on. • That’s never been good, especially when I haven’t had the means to explain to people up front why I’m the way I am.

However…
It may be true that when you don’t have much in the way of work experience, you will try your hand at jobs that don’t necessarily sound like a perfect fit, in order to find out what will and won’t work for you. This is not a bad thing… unless it goes on forever.

The Right Job
• …is the right job for you as an individual. There is no such thing as the universally perfect “autistic job,” nor are there any types of jobs that absolutely no autistic person could ever do! • For example…working retail might sound like a disastrous situation for an autistic person. But maybe not. • Maybe it’s a situation where you have a certain deep body of knowledge (about bicycles or vintage guitars, for example) and can put that to work in a retail setting.

Where vs. What
• Who you work for, and what the work environment is like, might be more important to you than what you do for a living. • Some autistics do really well working at home. I’m one of them. I have worked in medical transcription and text editing on and off for over 20 years (and my work disasters have mostly been when I haven’t been working at home). My present employers have never seen me, nor I them; I was hired remotely and work remotely.

But on the other hand…
…if you like to be stimulated with new things and people, having to spend 40 hours a week forever doing rote tasks will probably make you pretty miserable. Be honest with yourself about what your priorities are!

In any case…
• You may or may not want to disclose up front to a potential employer that you are on the spectrum. • Some autistic people do not appear to have ASD and don’t need much in the way of accommodations; they find that the accommodations they need are already built into the job. That’s absolutely fine. • But don’t avoid disclosing out of fear, either.

Which brings us to…
Most autistic people (who are not permanently and totally disabled for other reasons) could earn a living, or at least work part time, given the proper accommodations and supports.

So what might those accommodations and supports be, and how do we get them?

Two Separate Issues
• What are the accommodations and supports we need to successfully do the job we want? • How do we get people to give them to us?

Many people get stuck on the second issue.
This is perfectly understandable. Right now we have an labor situation in the U.S. (and many other countries also) that is very hostile to workers. It’s easy to get into the mindset of, “Well, people just aren’t going to accommodate me, because most employers have a huge pool of nondisabled applicants to choose from, and since they don’t have to tell me why I’m not being hired, or not being promoted, or fired, they can just avoid me entirely and never have to say why. So I’m just going to have to try to hide my disability and hope for the best.”

It’s perfectly understandable to think that. But it’s also wrong. And here’s why:
Unless you are one of those autistics who can pass in most situations for NAS (non-autismspectrum), the subject of accommodations is going to come up. And you have just as much right to them as anyone else. Remember: The rest of the world already gets accommodations. Yours are just different!

What Accommodations Might Look Like (Depending On Who You Are)
• A private work space where nobody will be constantly exposed to you stimming, scratching, or whatever other autistic behaviors you have • Failing that, a private space where you can go and have some time to stim in private and have some peace and quiet and cool your jets • Not having to answer phones or make phone calls (if you have a problem with phones, which could be a permanent aversion or something that comes and goes) • Getting to try out a work situation in an internship, apprenticeship, or trial work day, to see how it will suit you and them

• Understanding and open-minded coworkers and supervisors who don’t take it personally if they see you “being autistic” (opting out of watercooler chitchat, having staring spells, rocking, pacing, twisting, etc.) as long as you’re getting your work done and not actively preventing anyone else from getting theirs done • Getting to learn new things, if you get bored doing the same things over and over again • Getting to do the same things over and over again, if learning how to do new things freaks you out so much you cease to function

• Getting as many things in writing as possible and getting access to closed captioning (if you have auditory processing issues) • Being allowed to answer in writing whenever possible (if you have issues with speech) • Getting diagrams and pictures and demonstrations whenever possible (if you have issues with receptive language)

• Getting to listen to your music while working if that helps you, or having no music on at all in the room if it’s too much of a distraction – possibly even wearing earplugs if the noise is really bothersome and you can perform your job while wearing them • Having people be more obvious with you than they would be with NAS coworkers and employees about exactly what they want and need from you (instead of expecting you to figure it out by osmosis)

Supports
Supports differ from accommodations in that they are more about what happens before you look for work, and what happens when you leave work. You might need help with figuring out what kind of work you’d like to pursue. You might need help with vocational rehabilitation, educational access, finding a stable living situation, being subsidized in some way while you’re looking for work, or other things.

Early DXes vs. Late Dxes
In some ways, early DXes (people who were diagnosed in childhood or adolescence) have an advantage over late DXes (those of us who were diagnosed in adulthood; I did not get a diagnosis until age 44). If that’s you, you can enter the workforce for the first time knowing exactly who you are and what kinds of supports you need in order to be successful. You won’t waste nearly as many years wondering why it is that people keep having problems with you, no matter how hard you try to get along. You’re also more likely to be “in the system” in the first place, so you know exactly what resources are available to you. We late DXes have had to learn a lot of this the very, very hard way!

The Voc Rehab Option
• Vocational rehabilitation offices can potentially be good places for autistic workers to begin their job searches • They need to know what barriers you, as a person with a disability, has to finding traditional employment before they help you. Some counselors have much more experience and understanding of these issues than others..

Me and the Anti-CV
A CV (curriculum vitae) is similar to a resume but goes into more detail about a person’s experiences on the job (or at school). In Latin, it loosely translates as “the course of my life.” Typically, when creating a CV, your job is to explain to people why you’d be a good employee, what your accomplishments are, and so on. I took this concept and created what I call an “anti-CV,” which is a backwards-chronological-order detail of the problems I’ve had on every single job that were the direct result of my disability and lack of accommodations for it (including problems that arose from going undiagnosed for decades).

I did this so I could thoroughly explain to people I was requesting services from (voc rehab, Social Security, Independent Living Resources, etc.) what my barriers to employment were. I went into great detail about it, and it took 11 pages! And recently, it did get me accepted into voc rehab.

An anti-CV is something I’d recommend especially for late DXes who have already tried many, many jobs without a fit, and really need help on where to go next. But it could be useful to anyone who’s ever had problems on a job relating to difficulties with access.

For example…
This is an excerpt from my own anti-CV. During the first four months of 2002, I worked at <redacted>, doing proofreading of financial documents. I was working overnights here, and also had to do at least 10 hours a week of mandatory overtime most weeks. I was absolutely exhausted, and highly distractible. I got written up constantly for taking too long in the bathroom and for staring into space -although once again, I got plenty of work done.

(continued)
Here, though, I had to work at these long tables with dozens of other chattering proofreaders, and I told them I would continue to make errors until I got a desk in a quiet place and one where I could at least occasionally stand and work. At this time, my working diagnosis was attention deficit disorder rather than Asperger’s, so legally they had to accommodate me, but it took them months before they ever did anything, and by then, I had secured employment at <redacted>.

Another sample:
The fact that my [current] employers cannot see me means that I’ve had the option of not disclosing the Asperger’s, and I’ve opted, so far, not to disclose. They don’t see: How many times I go to the bathroom (sometimes just to go, as a tension reliever) How often or where I scratch myself My staring spells That I frequently choke on my own saliva or spill or drop things or trip over my own feet How much I squirm in my chair The weird noises I (involuntarily) make The things I say to myself or to the cat.

• • • •

• • •

(continued)
• They have limited exposure to my odd voice and vocal tics. • They cannot see the twitches and fasciculations and pinched nerves I get in various parts of my body which wind up taking over my brain when I have them. • They don’t know that I have scoliosis and a flat back and walk kind of funny. • And no coworkers in the vicinity means little chance I will say something bluntly honest, or laugh at something that isn’t funny, or not laugh at something everyone else thinks IS funny, or talk about things they have no interest in, or otherwise give them strong cues that I am not one of them.

The More Details You Can Give, the Better.
• Don’t be afraid to be a little gross and disgusting if that’s where your issues take you. Talking about digestive problems and other things happening in your body as a result of your condition is perfectly fair game. • Don’t be afraid of boring people with too many details. They might get the idea after a few pages and stop, but if they do that, your anti-CV has done its job!

Disclosure
When should you tell a prospective employer about being on the spectrum? If you’re getting placed through voc rehab, obviously they will know about your disability going in. But if you’re conducting a job search on your own, you’ll have to make a decision about what to tell them and when, and there’s no clear-cut, across-the-board answer for all autistics.

Your Options
• Tell them never, if you think you can get away with never telling and you’d rather not. • Tell them when you send in your resume/CV and application. • Tell them when you’re setting up the interview. • Tell them during the interview. • Tell them after you’ve already gotten an offer.

Practice Your Interview
You can do this either with another person or without. But video or audio taping a practice interview, while wearing your interview clothes, will at least give you information about what mannerisms you’re likely to display on an interview; whether or not you are willing and able to suppress them, you can at least be aware and ready with an explanation if you think it’s appropriate.

Holding Them to the ADA
So you got the job – congratulations! By now, you’ll have requested whatever accommodations you’ll need to do the job. But it doesn’t necessarily mean they’ll get on it right away just because you ask. They might very well drag their feet on getting you a secluded workspace, for example, and try to get you to accept a less-than-ideal setup “for now.” What to do?

Put It In Writing
If I had to request accommodations on my own, what I’d do is write everything out that I wanted and then hand deliver it to whoever is in charge of providing accommodations. Ask your supervisor who that person is. Unless it’s a very small company or you know that people there answer emails quickly, I wouldn’t rely on email to get your message out; most people are snowed under with work-related email. And of course, keep copies of everything, preferably dated ones.

Sic Your Doctor on Them (if you have to)
Don’t be afraid to call in the cavalry when it comes to getting accommodations, if your employers are putting up roadblocks. It will probably be cheaper and faster to get your therapist, psychiatrist, or other health professional who understands your condition to run interference for you, than it will be to hire a lawyer to do it. They’ve already got your records; writing you notes is part of their job.

Squillions of Books About Finding Your Bli$$
There is no shortage of books out there about finding your ideal career. What Color is Your Parachute? has been revised every year since its debut in 1970, and is still a perfectly fine resource. Barbara Sher’s books are all terrific. And there are many others. But whatever book (or Web site) you read about has to be looked at through autistic eyes; you have to take things into consideration that NAS readers don’t.

Can I Do It?
Maybe a certain job or career sounds like it would be a good fit, but what you’d have to do to get it doesn’t sound like something you could handle from the social or sensory standpoint. On the other hand, it’s easy to fall into the trap of thinking you’re incompetent and can’t handle things you very well could handle given half a chance (and some well-placed help). Don’t let other people tell you what you can or can’t handle; decide for yourself.

Ride-Alongs
Yes, I’m talking about “take an autie to work day” for real! If a particular job sounds interesting but you’d like to know what it’s really like, ask someone who has it to take you to work with them, so you can see what it’s really like. (Or you can have someone else ask, that’s perfectly fine.) If possible, you might even want to get more than one person in the same line of work for a “ridealong” if the work sounds interesting; the same job can be very different in different environments. Try out as many different ones as you think you can handle.

And finally…
….it’s okay to get it wrong, at least the first few times. Very few people (AS or NAS) find a job for life on their first try. If you really need money right now, you might have to grab something that’s more like a survival job, and that’s fine. Just know that it’s temporary, and if you have to, set a “quit” date, if that will help you get through it. And just know, there is a place for you out there, that will appreciate you for who you are and what you have to offer, as long as you don’t give up!

Andee Joyce ASAN Chapter Lead, Portland, OR andeejr@gmail.com

Website: www.autismnow.org
Information & Referral Call Center: 1-855-828-8476 Next Webinar: Tuesday, June 12, 2012, 2:00-3:00 PM, EDT How to Date Like a Pro! PowerPoint/Recording: Email Jennifer (jsladen@autismnow.org) to request materials!

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