Not Otherwise Specified

He Should Know Better

I can’t tell you how many times I’ve heard people say this about my son: school personnel, family, acquaintances, strangers, even. Fact is, no matter how much he learns and grows, he will always have Asperger’s, and it will always peek out in unexpected ways.

 

Here’s an example: He started college this fall. A small college, three hundred freshmen. No dorms. He lives at home with me. He’s taking a full course load: 20 credits, so he’s at the campus all day, every day. And he has a huge coffee habit. So, he was concerned about how he was going to get his coffee fix throughout the day since prior to college he’d attended online high school and pretty much had coffee whenever he wanted.

 

We work on problem solving a lot, so we brainstorm about acceptable solutions. He assures me that there is no coffee to be found on campus. It’s one building – really, one-half of one floor of one building, so I believe that he’s looked, and I’ve been there, too, so we’re going on the assumption that, yes, there’s no coffee to be found on campus. So, he decides that he will take a mug, and instant coffee packets, and heat water in the microwave for coffee.

 

Fast forward to two months later, and he phones me from school. He never phones me from school unless he needs a ride. He says, “I’m standing in front of the microwave making coffee. Next to the coffee vending machine. That has been here all along. That I actually noticed two weeks ago and just now realized I could get coffee from.”

 

There are a few things I love about this. One: he called to tell me. Two: he is not embarrassed about it; he finds it amusing. Three: I’ve used that microwave myself and never noticed the coffee vending machine either. Four: he in no way wants to change anything about the way he’s wired, not even this almost-impossible-to-believe slowness at making certain connections. Although he does actively work on learning more about Asperger’s and how to be the best he can be with what he’s been given, and he is a very hard-working student.

 

Just to give you a bit more information about him, he graduated valedictorian of his high school class because he was determined to gain admission to his current school, which is notoriously difficult to get into. He took extra math classes, and aced his standardized tests. He is very intelligent. Which is why people are always saying, “He should know better.”

 

But, really, he shouldn’t. Because he doesn’t. They should. Know better. Which is what autism awareness is all about.

 

So keep telling everyone you know that autism isn’t like they think it is. That just because someone is intelligent doesn’t mean they make connections the same way everyone else does. And that giving people the benefit of the doubt is always the safest and kindest option we have.

Accentuate the Positive

By my nature, I am wired to look for, and find, what’s out of place in my environment. What’s different, what’s wrong, what doesn’t fit, what’s not fair. 

 

However, I have learned that I am a much happier person if I focus on what’s working and look for the good. I am not Scarlett O’Hara; I don’t ignore things that are upsetting: I deal with them. I simply don’t focus on them, let them annoy me, or let them take center stage. I practice gratitude, joy, passion, love.

 

This is absolutely a learned trait, and one that I highly recommend to people on the autism spectrum. Barbara Fredrickson, a Professor of Psychology at the University of North Carolina at Chapel Hill, has done the research to prove that positive thinking works to improve our lives and relationships.  Not the blind optimism of Pollyanna positive thinking, but truly finding things to be grateful for, awed by, and delighted with. I’m looking forward to reading Fredrickson’s book, Positivity; the paperback edition is just out. You can take her Positivity Self Test  now and see how you’re doing.

 

The reason I recommend this for people on the spectrum, particularly those with Asperger’s, is that we can get caught in what I call the “Aspie Spiral.” Something goes wrong, and suddenly, everything is wrong, everything has always been wrong and everything will always be wrong. We either get very down on ourselves, or, we get very down on others.

 

Just knowing about the “Aspie Spiral” can be helpful. My son can get out of a spiral rather quickly by being reminded that it’s a spiral and that things will be better soon.

 

One thing I often tell parents is to have their children tell three good things that happened each day, and one bad thing, along with what positive steps they took to turn the bad experience around. This helps with positive thinking and with memory. As the child gets older, they can write these down in a journal, blog or personal document, however, talking about incidents with someone else, and receiving enthusiastic, honest, positive feedback is very helpful.

 

Dan Coulter wrote a terrific article called Rewriting Your Child’s Script   that is helpful for the person who ruminates on bad memories. I worked with one parent who kept track on the refrigerator of every time her son won a board game, and whenever her son lost, and exclaimed that he “never” won, she would show him the actual facts. He eventually became a much better loser.

 

So start practicing positivity and see where it takes you. Here’s a little something to help:

 

Accentuate the Positive, by Johnny Mercer

 

 

Confabulation or Lying?

Confabulation in Asperger’s was observed by Hans Asperger himself, however, not much is written about it today. Many people, professionals, even, will disallow an Asperger’s diagnosis if the individual in question tells mistruths, believing that people on the autism spectrum are truth-tellers to the extreme. Which we are, for the most part, ruthlessly.

 

Confabulation , true confabulation, can best be explained in Asperger’s by our faulty memory system. The brain, lacking information about the past, simply fills in the information. According to “Blurring the Boundary Between Perception and Reality” (Scientific American Mind, Dec ’08) everyone’s brain does this to some extent, just minor details, but for some people with Asperger’s, it’s more involved. And, some Aspies also confabulate fantastical stories. Not all of us, not even most of us, but some of us do. This can seem like lying, however the confabulator usually believes they are telling the truth.

 

So, if your loved one confabulates, arm yourself with information, and seek professional help. You can work on memory and connections and patience. And remember that confabulation is not lying. Help your loved one see reality gently.

 

Now I’d like to talk about lying. What I’m about to say has gotten me into trouble with some parents, and if it offends, I apologize. It’s my reality, not the reality, so please take it with as many grains of salt as you like.

 

I believe that we teach our autistic children to lie, either on purpose, which is what I do, or accidentally, through our behavior, which is what I think most people do. Sorry. I said you might not like it. Please bear with me if you can. I honestly don’t mean to offend. 

 

There’s this thing called a “white lie” which most people, I’d venture to say, do not really consider to be lying. Problem is, for people with autism spectrum conditions, we do. If it’s not the truth, then it’s a lie. We can be pretty black and white. Here’s an article on white lies that really pushes my buttons: “Truth be Told: When it’s OK to Tell a White Lie” (MSNBC, Oct ’07)

 

Now, I can understand the concept, and I work very hard not to hurt people’s feelings. But, really, one need only employ creativity to avoid hurting feelings whilst still telling the truth in most instances. And, I disagree with the entire concept that white lies are all about the other person. However, I am not against lying, truly. I just consider white lies to also be lies. And, if you love someone on the autism spectrum, I would venture to say that they agree.

 

And, if we were really, truly honest, we might say that most people tell more lies than just white ones.

 

I think we should be honest about lying: with ourselves and with our children. Truth is, my truth anyway, that sometimes lying is necessary, socially. And, sometimes it’s necessary to make things flow more smoothly, and avoid unwanted – by both parties – discussion. And, sometimes, we do it for self-protection. We’ll probably lie to the thug asking us where we keep our gold, for example.

 

So, in my home, lying is directly taught. How and when to do it. Why it’s important. What’s okay to lie about, and what’s not. Who it’s okay to lie to and who we should always be honest with no matter what. And what constructive honesty looks like, and how to be kind while being honest.

 

Because if you don’t choose to teach your loved one how to properly lie, they will still observe you lying, and in many cases will eventually learn to do it. They just won’t have the benefit of your guidance, and will only have yours and others' actions to show them what to do. They won’t know when it’s okay and for what reasons lying is acceptable. Remember that you need to connect the dots for your ASC loved one.

 

So think of this during this holiday season when you are telling your children to say “thank you” for their gifts. Try to come up with some ways of saying thank you that don’t include lying, or teach them why lying is important in gift-receiving situations. Practice ahead of time, because, really, we can be horrid liars. And please don’t ask them to truly be grateful if they don’t feel it. We aren’t wired that way. We can’t feel what we don’t feel, and being asked to can be utterly confusing.

 

If you think you never lie, you probably stopped reading some time back. If you’re still reading, you probably know that you tell lies sometimes, even if they’re only white. Because as my favorite t.v. doctor says, “Everybody lies.”

 

 

 

Asperger's or Quirky?

Often parents will express to me that they don’t wish to tell their child, or others, about an ASD diagnosis. “I don’t want to label them,” they say. I suggest that we label children all the time – smart, handsome, fun, witty, kind – but my logic doesn’t fly with them.

Most see autism as a negative label, and are worried about the consequences of saddling their child with this. Some don’t quite really believe their child has a “disability” and would prefer to think that Asperger’s, especially, is just a personality difference. And I’m cool with that, except, it’s a “personality difference” that can be made a lot easier to live with by implementing interventions and accommodations that are commonly used by people with this same difference. Some parents worry that their child will use the diagnosis as an “excuse” to get out of doing things or for behaving badly.

When thinking about labels, ask yourself these questions: What labels do people assign to your child right now? What does the teacher think when your son blurts out in class, or “refuses” to write an essay? What do the other parents think when your daughter won’t “let” you brush her hair? What do the other children think when your child loudly insists on having her own way or throws toys? What label is your child giving himself when he doesn’t measure up to others’ expectations over and over again?

Francis Bacon said “knowledge is power” and I’ve found this to be true in regards to Asperger’s. Most importantly to me, learning about my son’s Asperger’s helped me put into place interventions and accommodations that have made him the successful and happy young man he is today. And that makes me happy.

My son found out about his ASD in an interesting way. We had just received the diagnosis, and were still learning about it, so hadn’t yet told him. We weren’t even sure we would. I was reading the book “Freaks,Geeks and Asperger's Syndrome"  and was hiding the book, because the name sounded so awful.

My son (he was 11 at the time) found the book, and started reading it, probably because I was hiding it. When I discovered him, he said, “Do I have this?” I replied that we weren’t sure, and he said, “I do, I do have this; this is me.” He was excited.It was like the final puzzle piece had clicked and everything made sense. It was a relief.

I’ve spoken to more than a hundred spectrum adults since that time, and the overwhelming majority of them have felt the same emotion upon learning of their diagnosis: relief. There are other feelings to be worked through, however, learning about the diagnosis has brought about positive changes in almost all of their lives. One wonderful thing it’s enabled them to do is to find peers – others who think the same way and share similar stories.

As a person on the spectrum or the parent of someone on the spectrum, here are some things you can do with a diagnosis:

1.  Find a support group where you or your loved one can enjoy a community of others who are neurologically similar. I can’t stress the importance of this enough, for children and teens as well as adults. 

2.  Obtain a neuropsychological work-up to determine areas of strength and areas of weakness. This will help you know where you need to focus efforts and what strengths you can use to compensate for difficulties.

3.  Seek knowledge. Learn as much as you can; help your spectrum loved one learn as well. If your loved one had diabetes, you would help them learn about blood sugar testing, insulin levels, and proper diet and exercise. Autism is no different – one needs knowledge in order to manage differences. For a list of places to start online, try the links page on my website.

4.  Seek services. Whether this means Speech & Language services, Occupational Therapy Services, Social Skills training, Cognitive Behavioral Therapy, or something else, seek services to help build skills in areas where they are lacking. The neuropsychological testing will help you know where you need services. A medical professional can give advice also.

5.  Seek help with parenting. A fantastic place to start is Ross Greene’s book “The Explosive Child” . You can learn more about this parenting method here.

I hope for a world where one day the word “autism” will not carry a negative connotation. There are people working tirelessly for this: the Autistic Self Advocacy Network does amazing work and is run by an incredible young man, Ari Ne’eman. Please support this group’s efforts if you can; they are well on their way to making the world a better place for the autistic population. Another place to learn about autism self-advocacy is Wrong Planet.

With knowledge, and the power that it brings, those on the autism spectrum can grow to lead happy, productive lives. As my son’s psychiatrist once said, “Some day he’ll graduate from Asperger’s to Quirky.” Maybe so, however, he will most likely always look to the tools used by those in the autistic community to navigate his way through things that are difficult for him, so that he can strive to do his best, just like I do.