Not Otherwise Specified

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.”

 

 

 

Feelings, Whoa

Many people with Autism Spectrum Conditions (thank you, Simon Baron-Cohen , in whose writings I first read this respectful term) have a difficult time defining my feelings. It’s called Alexithymia . According to the Wikipedia article, one can be born this way, or one can become this way through trauma or lack of modeling or teaching as a child. Alexithymia is marked by a lack of vocabulary for feelings, difficulty identifying physical reactions to feelings and few dreams or fantasies.

 

In a recent BBC News article , researcher Michael Lombardo from the University of Cambridge talks about a study that shows autistic brains have difficulty processing information about the self. This may very well be why you’ll receive an “I don’t know” answer when you ask your ASC loved one how their day was, or how they are feeling.

 

Many people on the spectrum, my son included, have this limited emotional vocabulary. He is happy, sad or angry. Getting him to talk about his feelings is pretty impossible, of course this could be chalked up to his age, I suppose. And Simon-Baron Cohen does theorize that perhaps Autism is simply an extreme form of maleness. 

 

Since researchers don’t yet know how much alexithymics can learn about their own emotions, we can work on it and see. As parents, and people on the spectrum, we can work on defining emotions and talking about them, to increase our knowledge, vocabulary and self-awareness. When discussing events, be sure to also include emotions that go along with the event, including small emotions and gradients of emotion. Hang up one of those “How Do You Feel Today?”  posters and use it. Be a detective when you or your loved one isn’t feeling well, although be careful not to cause them to think it’s psychosomatic every time they are ill: sometimes a cold is just a cold.

 

And please remember to be positive. This is imperative, in my opinion, for someone who has difficulty defining emotions. If we don’t know how we feel, we may as well focus on the positive, and try to feel happy. That’s my outlook anyway.

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.