I’ve just returned from a presentation about the ADA (Americans with Disabilities Act). The presentation itself, given by the Ohio Rehabilitation Services Commission, was luckily held at my school, so that I was able to attend without transportation issues getting in the way. I think a lot of this is information that people with autism, as well as our employers and our schools, really need to know; so I’m going to give a brief rundown of what I learned. (Well, maybe brief. With the way I ramble on, you never know.)
First of all: The ADA is federal law, which means it applies in all states, but obviously not outside the United States. If you’re not in the US, the ADA doesn’t apply and you’re better off familiarizing yourself with your own country’s law and the practicalities thereof.
The ADA is a set of rules about what needs to be done to protect the rights of people with disabilities. They’re the same rights that anybody else has; but historically, people with disabilities have been denied them with regularity. Simple things like not being able to get into public buildings or being segregated within the public education system have resulted in a huge unemployment rate for disabled people (the figure quoted was 85%, though this is for “severe disabilities”; whether autism counts into this category is unknown, but since 85% is pretty close to the approximately 80-90% unemployment rate for autism, I’m going to guess that it does).
Enter the ADA. The gist of it is that people with disabilities have legal equality with non-disabled people. Employers have to hire people with disabilities if they’re best qualified to do the job; public services have to include people with disabilities (public services in this case being anything from a post office to a university); and people with disabilities shouldn’t be excluded by denying them reasonable accommodations. The ADA is basically an affirmation of the civil rights of people with disabilities.
Who is a “person with a disability”?
The definition of “person with a disability” is very broad under the ADA. It includes anything that impairs a major life activity, whether that’s a physical or mental health issue, a mobility issue, sensory differences, etc. Under the ADA, anyone who can be diagnosed with any kind of autism has a disability. Diagnosis of autism requires “significant impairment”, and this is a standard that is actually higher than what the ADA requires; therefore, if you can be diagnosed with autism, the ADA applies to you.
“Impairments of a major life activity” specific to autism would include things like caring for yourself, sensory processing problems, learning difficulty, problems with concentration, with thinking, with communication, and with any skill related to keeping a job. (Neurological quirks also count. So do seizures, auditory processing disorder, NVLD, and other autism-related conditions.) It’s a very broad definition. To give examples of just how broad, it also includes things like asthma, arthritis, or insomnia—things which don’t fall into the general public’s definition of “disability”. Even if your autism is just barely diagnosable, you are still entitled to any accommodations required to allow you equal access to work, school, and public services.
Interestingly, even those who have sub-threshold autistic traits may fall under the ADA. That’s because there’s an addition to the idea of “person with a disability” that includes people who are non-disabled, but simply perceived to have a disability. Many people with autistic brain wiring are seen as “slow” or “crazy”, diagnosed or not. If you are not diagnosable, or should have been but were not diagnosed for some reason, if you are perceived as having a disability you are still protected from discrimination under the ADA.
Exceptions to the definition of “disability” include normal glasses or contact lenses and temporary things that are expected to last less than six months (for example, a broken leg).
No IEP? No Problem. (Usually.)
As you probably know, disabled kids in the public school system (or in charter schools) can get IEPs. An IEP can be really simple or really complex, but its purpose is always to provide an education that the student can access and use to prepare themselves for adult life. Unfortunately, once you’re no longer in the public school system, you’re no longer covered by the IDEA, and you’ve lost your IEP. What now?
Well, in college, you’re no longer under the IDEA; but if your school is a public university, or if they accept government funding, you are still protected under the ADA (section 504, to be exact). Once you’re in college, your school doesn’t have to have an IEP for you; what they do have to do is provide reasonable accommodations for you.
This isn’t a free ticket to lie back and get lazy, of course. Just like an employee has to be able to do the job before the ADA will protect him, you have to be able to do the schoolwork. You don’t have to be able to get good grades, of course. The ADA applies whether you fail all your classes or get straight A’s. The important thing is: Can you take the class, take the tests, do the assignments—whether that’s done the normal way or any other? If yes, then your school has to accommodate you.
So what’s a “reasonable accommodation?”
In school, a reasonable accommodation is something that removes a barrier that would otherwise stop you from being able to demonstrate your ability to learn. For example, if you were blind, you would need to find a way to get the information from your textbooks to your brain; and your school would be required to help you do that, maybe with Braille, a magnifier, or audio texts. Once you got the information, what you did with it and how well you used it would be up to you. You would be tested on the same information as anyone else, but presented in a way that you could access. Similarly, being autistic can mean that you need to do things somewhat differently from other students. Accommodations are no less necessary, and the disability no less legitimate, than it would be if you were blind and unable to read a regular textbook.
A reasonable accommodation is something that allows you to access education, designed so that your performance will depend only on your ability to do the work—rather than on unrelated factors. Universities are designed with neurotypical students in mind; accommodations change that design to something that will work for autistics. And “reasonable” simply means that it’s something the school can do for you without having to completely rework their system or spend insane amounts of money.
You may worry that if you ask for an accommodation at school, it means that you are trying to get an “unfair advantage.” But that’s the furthest thing from the truth. Treating everyone the same way is not the same thing as true equality. If you are not getting accommodations you need, then that’s an unfair advantage to the other students because you’re facing a barrier that they are easily avoiding!
How do I go about getting accommodations at school?
Your first stop should be your school’s disability services office. They’re called different things, depending on the school, and they may or may not be used to working with autistic students. I went to one school where they didn’t even have the ability to provide a non-distracting testing environment to their students, despite that this is one of the most common requirements of ADHD. At other schools, you may find specialists who are specifically trained to help autistics get their degrees. Most schools fall midway between those extremes, but it pays to do your research before you apply to a college.
The disability services office will ask for documentation of your disability. This is allowed under the ADA. Most schools will ask for a statement from a medical professional, though some also want results of neurological testing. Some will do testing for learning disabilities if you suspect you may have one but haven’t been diagnosed.
When you communicate with the disability services office, you will have to be quite clear about what obstacles you are facing, as well as relatively flexible about how your school can clear those obstacles and allow you to pursue your degree. Know yourself. Don’t be afraid to take a friend or parent with you to help you communicate (but make sure they don’t make decisions for you); and don’t be afraid to communicate in writing if you need to do it to get your ideas across.
Often times, you will be able to solve a problem without asking your disability services office at all; most professors will allow you to do things like recording lectures, working alone on group projects, or sitting in the front row, without being told to do so by your disability services office.
What accommodations are useful for autistics?
There are many accommodations you may request, and most of them are quite minor and cost the school little to nothing. Things you may want to ask for include:
- Special seating in class. I ask to sit in the front row because it allows me to concentrate on the professor without being constantly distracted by the other students. People who stim in a very noticeable way may prefer to sit at the sides or in the back, so that other students are not distracted by them.
- Written instructions. Those with auditory processing problems or executive dysfunction will often have problems following instructions that are spoken only once in a relatively distracting environment. Having the professor write the instructions on the board or hand them out to the students can compensate for this problem and allow the student to refer to an organized list.
- Changes to lighting. Unfortunately, it can be very impractical for a school to stop using fluorescent bulbs. However, compromises can often be found. Some of the lights can be turned off, so that the lighting isn’t as bright. You can ask to have maintenance change older bulbs that have a more noticeable flicker. And, in small spaces like a dorm room or a testing room, you can bring in your own lamp and turn them off altogether.
- Tutoring. Whether it’s due to a learning disability or because you just need more time for things to sink in, extra lessons can be helpful. Most schools have tutoring services or offices that help with specific subjects like writing or math. If you benefit from tutoring, take advantage of these. They may or may not be free; but they are usually at least affordable.
- Recording lectures. Taking a small recorder with you into class allows you to record and review the lectures. You need to ask permission for this because the professor’s lectures are his “property”, and in some cases will contain copyrighted information. Most professors will allow it.
- Extended time on tests. If you have a slow processing speed, short-term memory problems, slow handwriting, concentration problems, or problems with perseveration, perfectionism, or executive function, extra testing time is a great way to compensate for those things. Some professors seem to think this is one of those “unfair advantage” things, but if you have an hour to take the test and your brain refuses to cooperate for half that time, then you are essentially getting half an hour, while your classmates are getting an hour—an unfair advantage for them. Get double time for the test, and you effectively have the same amount of time as your classmates. Besides, what matters more: Your ability to demonstrate what you’ve learned, or your ability to do so quickly? If you don’t know the material, you’ll fail the test no matter how much time you have.
- Distraction-free testing environment. For the easily distracted and those with sensory-integration problems, this can make a letter grade or more of difference. Some schools don’t have separate testing rooms, relying on cubicles in a big room instead—they’re better than classrooms, but still not ideal. WSU, which I’m currently attending, has private testing rooms, but the rooms are lit with fluorescent bulbs. I could probably request an incandescent lamp, but turning off half the lights seems to be working well enough for me. If you get this accommodation, expect to empty your pockets and leave your belongings in a locker or on a shelf before you go in. Most testing centers also have video surveillance to prevent cheating.
- Earplugs. It might seem paradoxical, but some autistics actually find it easier to listen to a lecture with earplugs in their ears. Earplugs can filter out distracting noises and damp louder ones, so that it’s easier to concentrate on the lecture. Profs sometimes need some convincing of this, however.
- Single dorm room. Many autistics need a private retreat to keep stress levels low. Many dorms put people into rooms with as many as six students. Needless to say, this can be quite incompatible with the autistic person’s sanity. Private rooms may cost somewhat more, but they are often worth it. Also consider renting a nearby apartment. When I was a commuter, I requested the use of the private testing rooms to de-stress in case of meltdowns. These rooms have locks on the inside (it’s not the same thing as being in seclusion at all), and have saved me from embarrassment multiple times. I was only allowed to use them when there was one available (there almost always was, except for finals week).
- Note-Takers. Dyspraxia which affects handwriting or problems processing speech quickly enough to select important statements and write them down can both interfere with taking legible, usable notes. Many universities will pay students a nominal fee to take notes on carbon paper or photocopy their notes and give the copies to students who can’t write very quickly. You will still attend class, of course, but your attention will no longer be split between trying to listen and trying to write.
- Coaching/Organization Help. Many schools have counseling departments; sometimes these departments are associated with disability services, and sometimes not. Other schools offer organization help through their disability services office. They will assign someone to help you manage your time, plan your homework, and organize your efforts with major projects. You will also be taught strategies that allow you to organize yourself independently and eventually no longer need outside help.
- Working alone on group projects. While learning to work in groups is an important skill, there are times when the groups are an incidental side-effect of how the project is organized, rather than an intrinsic part of what you’re learning. It does mean that you will do more work, but if you have problems coordinating with others, you can ask to do group work by yourself.
- Help with communicating with professors. It can be difficult to get across to the profs, especially if you have a communication problem. Having a mediator can help, especially if you and your prof’s communication styles differ radically.
- Having an aide at school. Not being able to live by yourself does not mean you can’t go to college. Most college students who aren’t living independently will live with their parents; but if you need help very frequently during the day, an aide is sometimes an option. At my school, several students have PAs, either in the dorms at night or throughout the day. As far as I know, these students all have physical disabilities, but there is no reason why an autistic student who can do college work but needs an aide would not be able to go to college.
What if they won’t accommodate me?
Well, don’t jump straight to “lawsuit”. Sometimes, they actually just need to have someone explain to them what you need, why you need it, and how it will help you use your skills. Sometimes, compromises can be made so that you can get what you need without exceeding the school’s ability to adjust. Sometimes, a mediator can help you come to an agreement without any hard feelings. Being assertive, but not confrontational, seems to be the best strategy.
So let’s say you’ve tried everything. You’re asking for something very reasonable, but the school won’t budge. If the school is being truly discriminatory—they don’t want “your type” studying there—then ask yourself whether this is the kind of school you want to be associated with. Even if you were to win a lawsuit, would you want to stay there, knowing they don’t think autistics belong in college?
On the other hand, it can be worthwhile to make your case and insist on your rights. Many people, after being mistreated, have become involved in legal cases that helped confirm the rights of disabled people. If it’s important enough, and the problem is bad enough, you might want to consider it.
So far, all I’ve been talking about has been the external barriers to you getting your education—the sensory issues, the distracting environments, the communication barriers. But there are another set of barriers that are probably a great deal more important than these primarily logistical issues; and these have to do with what you think of yourself, the world around you, and your abilities.
Many of us have the subconscious idea that autism is not as “real” as physical disabilities—that because you don’t use a wheelchair or a guide dog, your issues are inconsequential compared to those of people whose disabilities are more undeniably visible. But that’s a fallacy. It may be “all in your head”, but guess what’s in your head? Yeah—your brain, the part of you that does the most to make you who you are. That’s a pretty big part of a human being. Things aren’t immaterial just because they have to do with the brain. Autism is real; and your needs are legitimate. A deaf student may need an interpreter to translate a set of instructions; you may need them written down so you can use them. Both of you have the problem of accessing those instructions in a form you can use.
Some people have grown up in environments where they’re not expected to be able to make decisions for themselves, or to be able to advocate for themselves. Just being able to speak isn’t the only requirement for self-advocacy; it’s also important to know what to say and when to speak up. Some people have been so pushed down by abuse or discrimination that they have internalized it and come to believe that they actually are inferior. It’s important to re-evaluate what you think about yourself, and whether or not those statements are realistic. Don’t just believe something because our society says it’s true. And parents, teach your kids to advocate for themselves, starting when they’re old enough to choose a red teething ring or a blue one. Teaching self-advocacy is probably second in importance only to teaching communication when it comes to the education of an autistic child.
The important thing to remember is that when you are asking for adjustments to your education, you are asking for things that will let you demonstrate your skills—legitimate skills, things that you can do and do well. Even with that help, you are likely still going to spend more effort than most students; but why spend useless effort on things that don’t relate to your education? You’re here to learn the material. You’re not here to learn it the exact same way everybody else does.