To Disclose or Not to Disclose, That Is the Question

When, if ever, should you disclose to an employer that you are on the autism spectrum? Should you tell them in the interview? Should you tell them after they’ve hired you? Should you tell them only if a problem arises? Should you never tell them?

I have tried them all. If I tell them in the interview, I haven’t been hired. If I tell them after they hired me, whether or not a problem arises, I have been let go. And if I never tell them, well, I’m still on the spectrum, and I still experience the world as I do and behave as I behave, so then I just end up thinking everything is going just fine, and then suddenly I’m unemployed.

In my experience, people are extremely prejudiced against people on the spectrum. When I disclosed at Lockton Dunning, my supervisor immediately got the ball rolling on getting rid of me, and told me on the day that they did get rid of me that they had no intention of accommodating me. When I disclosed at Dallas ISD, I ended up in a race against the administration on whether or not I would get the accommodations I needed versus whether or not the administration would get rid of me by putting me on a plan, etc. They won.

The decision of whether or not to disclose is a personal one. Some don’t think they should have to hide who they are (that’s my position), while others have the position that it’s better to have a job and to not cause any problems of any kind. But because people think of autism only as a set of problems rather than a combination of problems and advantages, it seems that people shy away from keeping us around.

And let’s face it, there are a number of social problems involved in our employment.

We have a rather egalitarian outlook, and are likely to treat the cleaning people the same as the CEO. Even if we know better, having observed others, we still end up treating everyone more or less the same. While everyone else gives treating everyone the same lip-service, the fact is that if you do treat people the same, you will find yourself in a great deal of trouble in life.

We have trouble prioritizing. The ability to prioritize is very important for most work nowadays.

We have a tendency toward literalism. So even if we are helped with prioritizing, we will prioritize in exactly that way. If you have some complex way of prioritizing, you had better make sure you’re specific if you want us to do it that way. And that’s only the beginning of the problems that can arise with our literalism.

Of course, we are also good with attention to detail, strong concentration on our task, and tasks that require very creative thinking. You won’t find an autistic yes-man, though this is either good or bad, depending on the boss.

I suspect there are jobs in which disclosing isn’t a problem—tech jobs especially—but for most jobs, in my experience, the worst thing you can do is disclose. Only when we change people’s attitudes toward the autistic will our prospects improve.

Who’s Socially Awkward?

One of the main features of being autistic is that you’re socially awkward. I’ve always been told I was socially awkward, and Daniel has been accused of being socially awkward. And yet, when I watched Daniel interact with someone recently, I wondered who it was who was being socially awkward: Daniel or the other person.

Recently at a birthday party for one of my wife’s friends’ daughters, Daniel went up to someone and offered them a cup of water. The person looked at him, wondering why he was offering them water, creating an awkward situation.

But it was that person who make the situation awkward. Daniel didn’t feel awkward. He thought it perfectly normal and sensible to offer someone water to drink.

Daniel has also been known to go up to people he doesn’t know and give them a hug. Again, this results in an awkward situation, though the awkwardness is felt not by Daniel, but by the other person. Again, Daniel didn’t feel awkward. Rather, the other person felt awkward.

It seems, then, that the accusation of social awkwardness is really that the non-autistic person feels awkward in the situation. But let’s think about that. Would you accuse someone from another culture with different ways of doing things from yours of being socially awkward? In many ways it’s the same thing with an autistic person. Our ways are not necessarily your ways, and we don’t feel awkward when we do them.

The fact of the matter is that there are many social in which I don’t really know “what this is,” so I am sympathetic with those who have to interact with someone like Daniel or me and are wondering what kind of social situation they are in. We have to deal with it every day, and even when we know what social situation we are in or are trying to create, we are daily faced with others treating our interactions as awkward.

There probably isn’t a solution to this. When faced with a “strange” social situation created by another’s behavior, we are bound to feel the situation is awkward, and we are bound to wear that awkwardness on our faces. But the next time you’re in social situation where you’re wondering “what on earth is going on here,” just keep in mind that the person may in fact be somewhere on the autism spectrum. If we all just learn to go with it, a lot off awkward situations would simply disappear.

Autism and Discrimination—the Ongoing Problem

There is a great article on LinkedIn on neurodiversity and education titled The World Needs All Kinds of Minds. I have had a lot of experience with social opposition to different kinds of minds in my employment history. Whether it has been private companies or in my attempt to become a public school special education teacher, I have found almost universal animosity to my having Asperger’s.

People on the autism spectrum face difficulties at school, difficulties at work or even finding work (the unemployment rate among those with Asperger’s is around 20%, and it’s 80% among those with autism), and difficulties in most social interactions. Many of these difficulties aren’t really difficulties on our part, though, but rather an unwillingness by neurotypicals to adjust to the way we learn, the way be behave, and our work habits. I would even go so far as to argue that discrimination against autistic people is the last acceptable form of discrimination. And in many ways it’s only getting increasingly institutionalized in our universities especially.

Of course, more and more people are starting to realize this, as the first linked article shows. That’s why I think autism rights will be the next civil rights movement. The world will benefit greatly from a wider recognition of our positive contributions.

Why Your Teacher May Not Be Following the IEP

My wife, Anna, has been a teacher for thirteen years. She’ll be starting her 14th year this Fall. She has taught pre-K, Kindergarten, and now 1st Grade. Pretty much every year she has taught she has had children requiring an IEP, and yet, in all her thirteen years of teaching, in all her thirteen years of being required to attend trainings, she was never once required to take a training on how to fill out or follow the IEP, or on special education inclusion. The one training she ever took on special education was a roundtable on autism she took only because of Daniel–and it was not only completely voluntary, but didn’t count at all toward her training hours.

Overall, Anna has probably learned far more about the IEP process by being a parent of an autistic child than she ever learned as a teacher. Certainly than she was ever taught by the district. It may be that other districts and other states do a better job of preparing their teachers for SpEd inclusion and understanding and following the IEPs, but it’s certainly not the case in Texas.

This is why parents need to really be on the ball when it comes to their child’s IEP. It is up to the parent to make sure everyone is following the IEP, and you simply cannot tell yourself that the teacher means well and that everyone is doing their jobs exactly as they are supposed to. The teacher has twenty other children in his or her class, the SpEd teacher is likely to be in an  ARD meeting like the one you attended for your child rather than actually providing services, and the administration isn’t going around checking to make sure everyone is doing everything they should at all times.

So once you are finished with your ARD meeting and deciding what ought to be in your child’s IEP, your job has just begun. You will now have to periodically email the teacher to ask how your child’s progress is going, and definitely email the teacher your child’s modifications so they know that you know what your child’s IEP is–and this will also let them know that you expect them to follow it.

Let’s face it: we mostly expect everyone to do their job, and since we expect that, we don’t usually hover over everyone to make sure everyone is doing what they should. Of course, most people don’t actually understand what teaching entails–if they did, they would be shocked, appalled, and probably demand the overthrow of the entire system.

But since most people don’t, we mostly don’t pay much attention to what is going on in our schools, even when we have a child with special needs. But we really shouldn’t do that even with neurotypical children. We need to understand what is happening in our schools, getting rid of our romantic notions and ideological glasses that blind us to the realities of our public schools and the degree to which they too often fail our children–even when the teachers are trying their very hardest.

Will Your Child’s Teacher Follow the IEP?

School will be starting soon, and if you have a school-aged child on the autism spectrum, that will often mean working with the school in a much closer way than most parents will have to experience. Central to this is the Individualized Education Program (IEP), which is supposed to be developed with equal input from your child’s teacher or teachers, special education teacher or teachers, the administration, and you. Your child’s teachers are then supposed to get a copy of the finalized IEP so they know all of the modifications and accommodations they are supposed to supply.

Most parents just leave it at that and assume the teacher is doing what he or she is supposed to do. However, you need to be aware that this is often not the case.

Just because your child’s teacher is nice and seems to like your child or “tolerates” your child’s behaviors, that doesn’t mean he or she is actually following the IEP—or even understands it. For example, Daniel is supposed to have small group accommodations, especially for tests. However, we noticed he was failing all his tests. When we asked if he was being tested in a small group, the teacher told us she makes sure she’s right next to him when she’s administering the test. But that’s not the same thing as administering the test to Daniel in a small group. Not even close.

That happened this past year. Another thing that happened this past year involved our eldest child, Melina. In her case, we needed her two teachers to fill out some documents so we could have Melina tested to see if she may have Asperger’s. She has several autistic traits—something common in siblings of autistic children—so we wanted to find out if she was on the spectrum, not quite on the spectrum, or what. The doctor gave us two questionnaires to give to each of her teachers. When the deadline to get them back approached, we received a single questionnaire, filled out by both teachers together, and with entire columns circled.

I emailed the teachers and told them they were supposed to each fill one out, and that to me the way they filled it out by circling entire columns of answers suggested to me they weren’t taking the questionnaire seriously. I cc’ed both teachers and the principal, so the latter could know what was going on, but ended up in a pretty heated back and forth via email with her teachers, one of whom insisted that it wasn’t necessary for them to fill out the surveys differently. Of course, the fact that they both gave quite different answers on their surveys when they finally did do them separately proved otherwise, and I have to wonder to what degree their not taking the request seriously resulted in Melina being diagnosed as not quite on the spectrum, but close.

Parents need to be aware of the degree to which teachers may not take the autism diagnosis seriously, not follow the IEP, ignore problems, and blow off parents’ concerns. People who don’t face these sorts of things are themselves quick to dismiss these things taking place, arguing that teachers have so much to do, and so forth. Yes, but when it’s your child not getting the education or the treatment he or she deserves and is owed, I promise you that you’ll be the first one at the school door.

Five Ways Your Child Did Not Get Autism

There is no one way a child develops autism, though every way is in fact genetic. Even among those of us with Intense World Theory autism, there can be various pathways to the same basic outcome. And as with all things genetic, there are always environmental factors and effect genetic expression. But what you will not find are pure environmental factors.

There is also a lot of confusion about cause and correlation. It turns out there are many things associated with autism, but which are not actual causes. If you want to really understand the fallacy of correlation implying causation, enjoy this graph showing the correlation between increases in autism diagnosis and consumption of organic foods.

Here are five ways your child did not get autism:

  1. Refrigerator Mom
  2. Older Dad
  3. Vaccines
  4. Air Pollution
  5. Breastfeeding

Believe it or not, there are still people who believe in the Refrigerator Mom theory. There is no parenting style, no matter how bad, which could cause autism. If there is a correlation between “refrigerator” moms and autism, it may be that autistic moms have autistic children. To a neurotypical parent, autistic parenting may appear cold and rational, but quite frankly, cold and rational is better than most forms of parenting out there.

Speaking of correlations, the correlation between older dads and autism is almost certainly due to the same situation: the dad is on the spectrum, and people on the spectrum get married later than neurotypicals, so therefore autistic older dads have autistic children. Daniel is seven, and I am forty-six. I’m obviously an older dad. But being older didn’t result in Daniel being autistic; my being autistic resulted in Daniel being autistic.

Other than one repeatedly falsified study—a study which was subsequently proved to have been mostly made up—no research has shown a single connection between vaccines and autism. Of course, since autism is genetic, and since there is literally nothing in vaccines or resulting from getting vaccines which could possibly cause such a specific mutation spread throughout the body in every cell simultaneously, there is no way vaccines cause autism.

The rise in autism diagnosis has actually correlated with decreases in air pollution, so unless you want to argue that cleaner air causes autism, air pollution has nothing to do with autism.

Another correlation—increases in breast feeding rates have correlated with increases in autism diagnosis. Does this mean that autism rates were high until the wider availability of formula allowed women to stop breastfeeding, after which it dropped, and now it’s on the rise again because of more breastfeeding? Anyone who believes this could probably be convinced that organic foods causes autism, even though all food was organic before the 20th century. But somehow people have been convinced of this.

And while we’re at it, here are 8 more ways your child didn’t get autism.

People love to blame parents, and especially mothers, for why their child is autistic. But remember, unless the claimed cause can result in a mutation that affects brain structure and function, or affect the genes affected by that mutation, it didn’t cause autism.

Six Advantages to Being Autistic

For most people, autism is nothing but a series of negatives, a list of problems. And for many parents it can be extremely hard to see the positives. Especially if you have a child with a great many problems or who is low-functioning. So what’s this nonsense about there being any advantage?

Is there an autism advantage? The intense world theory of autism suggests there ought to be. And the evidence of special skills among high-functioning autistics suggests there are and can be advantages. If so, why does everyone treat autism as a deficit?

While understanding that there are different kinds and expressions of autism, here are six things you are much more likely to find in autistics than in neurotypcials:

  1. Directness—odds are you will get the truth from us
  2. Attention to detail
  3. Strong tendency to be experts, given their strong interests
  4. Loyalty
  5. Perfect pitch
  6. Ability to mentally rotate 3D structures

This list could easily be longer, and I will talk about many other advantages in future posts, but this is a good start.

It is not uncommon for humans to treat “different” as “deficient.” Throughout history, people have typically considered their cultures to be better than all other cultures—not just different, but better. We have learned to overcome this bias in many areas—race, sex, gender, culture, etc. —but I fear we are merely shifting those biases to other areas, including ideologies and psychologies. What if we considered people with autism to have a different, but normal, neurology and, thus, psychology? That is, what if we accepted neurodiversity?

Accepting neurodiversity does not mean that we don’t try to help people when they make social faux pas. Or we can consider that an “apparent weaknesses (bluntness and obsessiveness, say) can also be marketable strengths (directness, attention to detail).” I’m not as blunt now as I have been in the past, but that is mostly because society beats it out of you after a while, so you learn to just keep your mouth shut. But I am also extremely honest and very loyal. Now, you would think any business would want someone with strong attention to detail and who is honest and loyal. But it seems that these are if anything grossly undervalued anymore.

If we consider the fact that “the autistic mind is superior at noticing details, distinguishing among sounds and mentally rotating complex three-dimensional structures,” one can easily imagine a number of things people with autism can and ought to be able to contribute to society. Little did I know that my ability to rotate organic molecules in my head, leading me to getting extremely high grades in organic chemistry in college, came from my being autistic. But in my experience, all of these things are overlooked.

As a result of being overlooked, many businesses—and the economy, and our culture—are missing out on some great, creative workers. It is a real shame that institutional discrimination, fueled by bias against neurodiversity, prevents so many with autism from being allowed to contribute.

Discovering My Asperger’s

You have a child.

He learns to speak very early. He can read Dr. Seuss books by 2½. He learns things very quickly. He begins writing at a very early age and, being very imaginative, begins writing stories. He has a fascination with nature. He loves to read everything on every topic, from nonfiction to fiction. He is generally well-behaved, though often argumentative.

He cannot look you in the eye when he talks with you, but rather looks at your mouth or his eyes are darting all over the place (making him hyperaware of his surroundings). He is socially awkward and has difficulty making friends. He prefers to spend time alone, whether in his room or walking in the woods. He obsessively makes lists—lists of dinosaurs, then lists of sharks, then lists of plants. Everyone agrees he is highly intelligent, but the standardized tests at school suggest he is average. He is exceptionally good at seeing patterns.

I think most people would be pleased to have the first child. That child is obviously intelligent, but otherwise quite normal. The second child, on the other hand, is obviously autistic. More, the two children seem opposites. Autistic children aren’t supposed to be imaginative, and they have speech delays. But if you combine the two, you get a child with Asperger’s. Of course, not all children with Asperger’s have the same traits. But like all autistic children, children with Asperger’s have difficulty communicating, even though they don’t have the speech delay, and they also have coordination problems. Being a writer doesn’t mean you don’t have communication difficulties outside of writing.
Since we learned Daniel is autistic, I have read a lot about autism. One claim that confuses me is the claim that autistic people aren’t creative. That’s hardly my experience. In fact, there’s good evidence that most gifted and talented children are somewhere on the spectrum, probably with Asperger’s.

The Intense World Theory (IWT) of autism, which describes me and my son almost perfectly, makes it possible to have an autistic person who is also creative. Given the belief that autistic children aren’t creative, his creativity would make one wonder about his being autistic. More, from the description of autism from the IWT, the two people who know me best—my wife and my brother—each independently concluded that I probably “have that” well before I was officially diagnosed.

Of course, nobody would have thought there was anything wrong with me growing up. Asperger’s was unheard of in the U.S. in the 1970s and 80s, and autism was practically unheard of. Besides, what is wrong with a child who speaks early and reads by two and a half? And later, when he spends his time in his room reading books and making lists, it’s because he’s just a little peculiar, because he’s so smart. He likes to spend time in the woods because he likes nature. And he does have friends, even if he doesn’t spend that much time playing with them.

The difference between Daniel and me is that he had a speech delay. And he’s having some difficulty learning to read. His language improved quite a bit, and based on his vocabulary and the things he says, few would think there’s a problem. His speech patterns, though, may give it away. At the same time, as he gets older, I see much more of a continuation between him and me. His world might be a bit more intense, is all.

Indeed, the fact that IWT autism means you have a brain dominated by positive feedback also explains much. It explains why I swing between high and low energy—one would typically consider me to be mildly bipolar. It explains why I am sensitive to food textures and to things touching my wrists and neck—and general touch-hypersensitivity at times (high energy times). And it explains my extreme empathy—which makes me socially uncomfortable at times, yet allows me too to really hone in on people’s problems. And it makes me particularly interested in stories. I love fiction, and I love to write fiction.

Indeed, IWT does seem to explain so much about me. It is a fascinating insight.

Do You Know Me? – A Game for Social Learning

Not long ago, Anna and I overheard Melina playing a game with Daniel. She called it “Do You Know Me?” She was asking him questions like “What is my middle name?” and “What is my favorite superhero?” And he was answering.

Anna and I both realized at about the same time that what Melina was doing was absolutely brilliant. She had Daniel engaged through the use of a game format, and the same was a social game. By asking Daniel these kinds of questions, she was letting him know that there were aspects of people that he could know that was similar in nature to his other interests.

She also expanded the questions beyond herself to include the rest of the family. For example, she asked him, “What is daddy’s middle name?”

It probably won’t surprise anyone that Daniel did quite poorly in correctly answering these questions at first. And some of the answers were surprising. I mean, even I would have guessed as he did that Melina’s favorite superhero was “Super Girl”, and would have never guessed in a million years that it was “Black Widow.”

Melina has played this game with Daniel several times, and my wife, Anna, has also taken to playing it with him. And Daniel has responded—and learned more about everyone in the family. If you know and understand people better, it’s easier to be social around them.

But there is another aspect to this game. Daniel of course has to ask questions himself. Which helped develop his language and ability to engage in conversation. It also helps him understand that there’s always give and take: if you want people to learn about you, you have to learn about them.

For neurotypical people, most of the answers to “Do you know me” questions will just be picked up from fragments of conversation and observation. However, this doesn’t happen with autistic children. To varying degrees, they need to be directly told, directly taught any number of social cues and situations.

In other words, these are the kinds of questions people on the spectrum ought to be asked so they can learn the answers about the people around them. Them knowing a bunch of trivia about you might even make an autistic person want to get to know you even better, just like Daniel has been doing more and more with his family and classmates.