Autism and Life after High School

I would like to thank St. Cloud Area School District 742 for a wonderful audience of high school students, teachers, and support staff. I spoke at Apollo High School Wednesday morning and it was a great audience. The topic of my presentation was "Life after High School," something that every junior and senior can't wait to experience.

When we started talking about employment, I suggested it is in your best interest for legal reasons to disclose any disability to the human resource specialists at your organization. I also encourage students to contact the Disability Services at any colleges or universities they attend. There are some good reasons to be proactive.

"Nothing about my disability affects my job," the student replied (paraphrasing).

I hear variations of this from students, especially young adults with "hidden" disabilities. I've had students with seizure disorders, ASDs, migraines, auditory processing impairments, and learning disabilities tell me, "I'm not disabled."

Okay, we can argue the semantics of "disabled" and "differently abled" and whatever else you prefer, but the short response is: legally you are protected by the Americans with Disabilities Act, not the Americans with Different Abilities Act or the Americans of Diverse Physical Experiences Act. So, like it or not, you have to disclose a *disability* to protect yourself legally and defend your rights in the workplace or post-secondary academic setting.

Until I started my graduate degree, I had never bluntly declared myself disabled. Why would I do that? But, the reality is my parents certainly informed my K-12 schools and made arrangements to accommodate my physical and neurological differences.

"Why should I tell anyone?" students will ask.

Now, I can answer from the perspective of an employer, an educator, and an adult with lots of life experiences.

1) Your own safety.

If you have a seizure disorder, stimuli sensitivity, migraines, autism disorder, or any other impairment that can cause physical reactions, someone should be aware of this. Even if your last seizure was years ago, you simply cannot predict such things. I've gone most of a year without a serious migraine and months at a time without a bad palsy episode, but those things do happen. No employer or school can be held responsible for *not knowing* what you didn't tell them.

In my case, I tell the appropriate people that I have a palsy and partial paralysis. I also explain any other issues that could be problematic. That does not mean I plan to have problems. In fact, I hope to never have a serious issue at work. I tell students and parents this is like making back-up copies of data from your computer: when you do backup data, your computer never crashes. There's some sort of paradox that the more you prepare, the less likely a real emergency becomes.

2) The safety of others.

Imagine if my partially paralyzed arm were to palsy while I was carrying a desktop computer or laser printer. It would fall, definitely, and potentially harm not only me but anyone too close to me. There are some physical limitations that can and do increase the potential for unintentionally putting others at risk.

Your coworkers, clients, classmates, et alii, deserve to be protected from any reasonably preventable risk. A school, organization, or employer has the right to know if your disability could present any risk. More importantly, this is not something you should determine on your own -- you should allow an HR or DS specialist the opportunity to help you make this determination.

3) No, life is not "fair."

Yes, some people will judge you if you disclose a disability. That's lousy, but it is a fact. I know we all want to change that and help people become more tolerant. If someone doesn't want to work with you because you're disabled, that's their loss -- not yours.

4) Do I give up?

Don't give up when a company or school tells you that they cannot accommodate your disability. I work with some great autism experts, occupational therapists, and others who help me answer questions employers and schools have.

Because of my paralysis, I cannot always lift heavy objects "properly" as defined by federal occupational safety regulations. However, a physical therapist taught me about various (cheap) alternatives I could present to employers, even offering to supply my own adaptations. I use a cart to move my supplies from one classroom to another, for example. I bought the cart and it is a great device. I love it. The school is spared any hassle, and I'm not going to drop anything.

Disability Services at universities have experts in how to accommodate special needs. Most public school districts also have such experts. Meet with these people and prepare potential answers for concerned employers or university faculty. If you tell an employer, "I have a visual impairment, but I can provide my own screen filter," that demonstrates how serious you are about a job.

One student pointed out, "I shouldn't have to pay to work somewhere." No, legally you don't have to make your own accommodations, within some reason. However, don't we buy our own glasses? Don't I buy my own cane to use? I pay for all sorts of little conveniences. We can debate what is or isn't reasonable, but at least try to reduce any and all reasons someone might use to not hire you.

I know this topic deserves more attention and deeper thought. I'm not advocating for the view that employers and schools should do nothing. Quite the opposite is true. I think an employer should do anything possible to hire and keep the best employees, especially those with special needs. Why wouldn't I provide special technologies to help accommodate an outstanding employee? Heck, that employee is going to help the company or organization serve clients well.

But, you have to be an open and honest advocate for yourself. You don't have to disclose every detail of every limitation with which you live. However, to fully obtain legal protections requires telling the appropriate experts at an employer or school. They really are there to help you!

Note: I'm going to put more of these presentations online, since they seem to be popular. I have DVDs and Keynote presentations, so the effort shouldn't take more than a few weeks to get something online. Unfortunately, I am swamped right now with a long to-do list and need to tackle items in order or I'll never get any one project completed. The post I planned on writing and autism will be composed tonight. Sorry for that delay, too!

Comments

  1. What advice would you have for someone with Hyperacusis? I have had earplugs suggested to me, but when I wear them I can't hear other people.

    My biggest problem in having Hyperacusis, is that it seems parents today believe their children have a right to make noise and disbehave. When I try explaining my situation to most parents, I'm accused of disliking children. So I feel stuck, since I don't want to be fired because a parent misinterprets my sensory defensiveness towards their crying child as aggressiveness.

    I'm not the only person who feels discriminated for having a condition where sound can cause them pain. I hope more knowledge about Autism Spectrum Disorders helps, but it feels very frightening when I'm upset by a noise a kid makes, because I feel I'm helpless to do anything about it other than leave.

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  2. There are some people for whom no explanation would suffice. It is ironic that many claim "autism" is "self-focused" and even narcissistic, which it is not, while those of us with disabilities of any kind find out how self-absorbed too many other people can be.

    I've asked young people to turn down their iPods, which often are so loud they cause me pain. They look at me clueless: "I can barely here this!" one told me. If that's the case, this person had ruined his hearing. I'm sensitive, but I'm not that sensitive.

    First, explain to any employer's HR department that you have a medically diagnosed condition. In the U.S. any such diagnosis is covered by the ADA and should offer some job protection. Next, I've gone so far as to post a note on my workplace are so others could see it: "I am light and sound sensitive. Please do not adjust my workspace." I've told coworkers I get migraines, which seems easy for them to understand and appreciate. Most people don't grast complex partial seizures -- they'd see it as "zoning out" and no big deal.

    I've found that when coworkers and managers understand, they can often help mediate difficult situations. If you do great work, managers tend to want to help keep you around, so they can become your best allies in a workplace. A truly great manager will even help you deal with clients and public settings.

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  3. "is that it seems parents today believe their children have a right to make noise and disbehave."

    If I had $1 for every time someone assumes I'm a bad parent because my autistic child makes noise and misbehaves for the simple reason that I "allow" him to do it, I'd be a millionaire.

    I'm surprised C.S. you would let such a statement go without challenge. That statement is the type of public attitude and false belief that keeps many autistic children leading lives like "attic children". Its terrible and a horrendously false stigma.

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  4. Having owned two retail businesses, I assumed Violet, who is disabled, was referring to the children of many people in general. I have much the same complaint with the way many parents ignore their children and allow them to freely wander and even destructively run about some settings.

    More than once I had parents chatting to each other while one of the children was opening products, tearing at books, or worse. It might be a minority of parents, but they are a real problem and cost everyone money and effort.

    I believe most of with disabilities attempt to distinguish based on how the parent is responding. Casually standing there, ignoring whatever your child is doing? That's a signal the parent is allowing the behavior.

    When I would ask parents to please monitor their children, they would often become indignant. One even told me, "What's a few stupid books?" Well, it was my potential livelihood. Guess that didn't register, though.

    Teaching wasn't much better. Too many parents really, truly don't care. I've been stunned by such attitudes, until I stopped assuming parents do care so I'd stop being disappointed.

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  5. You don't get it. That's clear.

    You are also not a parent or know anything about those children but feel free to pass judgment.

    As far as Violet being disabled, that isn't a free pass to make bigoted statements about a group of people, I'm sure you will agree.

    We have to live in a world that is full of people different from us. Sometimes those other people can disrupt our serenity. That's life.

    Frankly, you are demanding sensitivity but not giving it. You have no idea what life is for another person nor do you know that sometimes parents let their kids "misbehave" because the alternative is worse. Sometimes people are just worn down by life. You never know.

    I invite you to stand in my shoes as a parent of a "misbehaving" autistic child for 1 day and go out in public with him. Have people scream at you in the parking lot and tell you to quiet your child and when you tell them he's autistic, they look at you and say "so the fuck what keep him at home if he can't be quiet." My kid deserves just as much freedom as you or Violet does and they can go and be children, even ones that "misbehave". Don't like it, stay at home. Afterall, that's what we're told.

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  6. Please do not post profane language to this blog. I thought about removing the comment for that alone. It upsets me a great deal and is unacceptable. No such language will be accepted in the future from any poster and I will add that to the policies statement.

    I do not "pass judgment" -- no one has the "right" to destroy private property or harm another person. If a parent really cares, when asked they will offer an explanation and try to help the person expressing concern.

    I've had a child attack another child in our bookstore and the mother laughed it off. I could be sued for such an incident. The other child could be seriously harmed, which is a much bigger concern. And the grandmother who was with the child? She said the other kids should just deal with it.

    You are jumping to conclusions based on experiences of people not politely asking or explaining risks -- and you are also assuming a great deal about me not knowing what it is like to spend days at a time with special needs children, as a teacher and mentor.

    If you explain something, that's great. Most good people would understand. But I've dealt with parents and guardians putting their child, other children, and other adults, at physical risk. There's never an excuse for that.

    I'd assume you would *not* allow your child to wander about hitting people, breaking things, etc, while you stood around laughing. I've had numerous such experiences, sadly. As a teacher, I have done my best to protect every child in a classroom. When a parent doesn't do the same, it frustrates me and upsets me.

    Serenity is not the issue -- safety is. Physical safety.

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  7. "Please do not post profane language to this blog."

    I don't like to hear profanities either, unfortunately the general public feels its necessary when communicating to me about how much they dislike my child. Its better you understand the ugly reality of what is really said. If we fail to understand how ugly the reality is, we are less effective in advocacy.

    Who is exactly arguing for the right to destroy public property or harm another person?

    Spending time with the special needs population? Do you want a badge for that? Look C.S., I'm as autistic as you, spent years in special education and labeled mentally retarded. However, once you become a parent, the taunts from strangers, the sting of insults is far greater when they are directed at your child than when they are directed at you. You'll just have to take my word for that. Not to be argumentative, but working with special needs children is not the same as parenting a special needs child. I don't think you mean to be destructive when writing that, just try to keep in mind that the way those of us parenting a special needs child would read that and think "great, another person claiming to be some expert because they 'work' with our children."

    Safety is not the argument you made, disturbing the peace and loss of revenue is the argument you were making. Where in this were you saying it was a matter of safety? This was what my comment was responding too:

    "More than once I had parents chatting to each other while one of the children was opening products, tearing at books, or worse. It might be a minority of parents, but they are a real problem and cost everyone money and effort.

    I believe most of with disabilities attempt to distinguish based on how the parent is responding. Casually standing there, ignoring whatever your child is doing? That's a signal the parent is allowing the behavior.

    When I would ask parents to please monitor their children, they would often become indignant. One even told me, "What's a few stupid books?" Well, it was my potential livelihood. Guess that didn't register, though.

    Teaching wasn't much better. Too many parents really, truly don't care. I've been stunned by such attitudes, until I stopped assuming parents do care so I'd stop being disappointed."

    You don't like the language I used? Neither do I but its apart of my life and its directed at me and my child constantly. You should know that. It'll make you a more effective and informed advocate.

    ReplyDelete

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