Not Otherwise Specified

Outrageous

Imagine you have Diabetes. You were diagnosed a few years ago, after struggling with baffling symptoms for quite some time. After your diagnosis, and treatment, you began to feel much better, and you are so grateful that you were finally able to find out what had been causing you difficulty for such a long time. Now, you work hard to learn more about Diabetes, and to follow your doctor's advice. You stick to your dietary recommendations, you exercise regularly, and, if needed, take the appropriate medications.

You have a doctor's appointment coming up, so you gather your blood sugar data from the past few months, and look forward to going over your case with your doctor. When you meet with her, she tells you, "I have some news for you. You no longer have Diabetes." You are pretty excited, because you think that perhaps your hard work has paid off and you have beaten your blood sugar problems. The doctor goes on to explain, "The medical definition of Diabetes has been redefined. Most people with blood sugar problems still fit that definition, but people like you, who are careful to eat properly, exercise and take their medications, no longer fit into that medical definition. So, according to the new definition, you are no longer Diabetic."

"What does this mean to me, Doctor?" you ask. "Can I stop taking my medication?" "Do I still need to be careful with my diet and exercise, or I am cured of my Diabetes?"

"Well, you still will need medication, and if you aren't careful with your diet and exercise, you will most likely get very, very sick, and could seriously damage your internal organs, so you definitely need to keep up on all those things." But, for medical purposes, you can consider yourself cured of Diabetes, since you no longer meet the medical definition of Diabetes under the new criteria.

"But, I can still see you, and my insurance will still pay for my treatment?"

"No, I am a Diabetes specialist, so you can't see me. You will need to see your General Practioner for treatment, since you don't have a particular disease, just some things that you need to watch. As long as you are careful, you are not that different from typical, non-sick people. And, no, your insurance won't pay for your medication anymore, because it's diabetes medication, and you're not Diabetic. I doubt that it will pay for nutritional counseling either, because you are doing so well."

"But doctor, I only found out about my Diabetes because my son was identified as pre-diabetic. You know, kind of a mild form of diabetes? Will people still be identified as pre-diabetic, and receive help for that? So that, like, future kids and families will get the help they need?"

"No, no, your son had a really mild case. Now, under the new definition, there is really no 'pre-diabetes.' Kids like your son will just have to watch what they eat, and be sure to exercise, and if they get worse, then maybe they will qualify for a diagnosis of Diabetes someday. Then they can get paid-for medical help. I'm not really sure how they will know to watch what they eat, etc. but I'm sure everyone will figure it out. It's always worked out before, right?"

Outrageous? I think we can all agree that simply changing the definition of a medical disorder does not actually take away the difficulties experienced by the person with that disorder. And, hopefully you've figured out that I'm not really talking about Diabetes, I'm talking about Autism.

Whether or not one agrees that the proposed criteria for Autism Spectrum Disorders in the upcoming DSM-5 is a substantial change from the current DSM-IV criteria is immaterial to this discussion. If you're interested in opinions about the content of the DSM-5 criteria, here are a couple of informative writings: Amy Caraballo (The Diagnostic Panic Room) and John Elder Robison (Panic Over Dsm-5 Changes in Autism Diagnosis).

What I want to point out is that it is outrageous that anyone is actually considering that it might be okay to boot people off the autism spectrum. Because that is what I've heard "professionals" spouting in some forums and news programs. That if we can narrow the definition of autism, we can save the money and resources for "the people who really need it." Which, in their way of thinking, would leave the people who have a working program in place out in the cold with no supports. And worse, without any understanding of what makes them different and what might help make things work for them.

That's the attitude I'm outraged about. That anyone would think it might be okay to simply change the definition of disorder to exclude people. That anyone might think that simply because some people have greater needs (in their opinion) it might be okay to deny services to others who (in their opinion) have lesser needs.

I'm not saying the new definition will exclude people. I'm just saying that the unabashed glee of some people who think it will is outrageous.

 

A Special Guy Joins the Army

He had just turned 18 when he marched down and answered his draft call to the Army, in February 1945. He had 4 months left until high school graduation. His father marched right down after him and unenlisted him so he could complete high school. Those being more reasonable times, he was able to accomplish this with no trouble. 

Immediately after high school graduation, he re-enlisted and went off to boot camp. Boot camp proved to be a very difficult time, as this devout young man was taunted and bullied for his religious beliefs and practices. There was most likely more to it, as he was to find out many, many years later. 

He earned the rank of Corporal and was assigned the position of Clerk Typist in the Army Ground Force Liaison Office. He had dreamed of becoming a pilot, but color-blindness grounded him. As a conscientious objector, he was never assigned to combat duty, and because the war ended soon after he enlisted, he never went overseas.

His Commanding Officer said something to him, that he remembers to this day, and that he never understood until 60 years later. The officer said, "I'd like to promote you, but I just don't understand you." 

These words haunted him throughout his life, as it seemed that so many people just didn't understand him. He didn't know why, and spent much of his life confused about this, and blaming himself for not measuring up.  

He married - a beautiful young lady that he met while on duty at Fort Dix, NJ - and they had four children and five grandchildren. When he was 80 years old, one of his grandsons was diagnosed with an autism spectrum condition - Asperger Syndrome. 

As he listened to the symptoms of the condition being read aloud, he remarked, "What are you reading? You are talking about ME!" After much investigation and consulting with professionals, it was determined that he did, indeed, live with an autism spectrum condition.  

At 80 years of age, this special guy finally had some answers that helped him make sense of years and years of difficulty. This new lense changed so much for him. It helped his wife understand some of the emotional difficulties she had faced in their relationship, and so, for the final two years of her life, she could truly feel the full force of his love for her, in ways she hadn't been able to completely appreciate before. And it helped him understand that it wasn't a flaw in himself that caused all those problems for all those years - it was a difference - one that was just hard for others to understand, but that didn't make him bad or wrong or broken.  

So, this Veteran's Day, I'm thankful for my Dad, and I'm thankful for the diagnosis of Autism Spectrum Conditions that is helping people around the world make sense of their differences. I'm also so grateful for the work of autistic advocates who work tirelessly to make the world a better place for those of us on the autism spectrum.

 

Sara Gardner, diagnosed Autism Spectrum Condition at age 41

 

Helping the Behaviorally Challenging Child

If you’ve tried reward and punishment systems (sticker charts, tokens, bribes, “consequences”) with your child and they don’t seem to work, read on! All too often, parents are told that they just need to be more consistent and their child will fall into line with the reward and punishment system. But, try as you might, it’s not working – and it’s not going too well at school either!

So, what’s up with that? Why do some kids thrive on a “token economy” (another word for rewards and punishments) and some kids actually seem to get worse? Is it really the parents’ fault for not being consistent or firm enough? Is the child just manipulating everyone to get what he/she wants? Or worse, is the child simply “oppositional”?

Dr. Ross Greene, in his book “The Explosive Child” offers another way to look at “misbehavior.” He suggests that “Kids Do Well If They Can”^TM and if they are not doing well, then something is getting in the way. He talks about “lagging skills” and “unsolved problems” and the difficulty some kids have accessing coping skills in certain environments and situations. To learn more about his theory, and his plan for solving problems, called Collaborative Problem Solving (CPS) pick up a copy of his book or visit his website: www.livesinthebalance.org.

Let’s think about this theory of lagging or lacking skills. Imagine you are driving in a remote area, and suddenly have a flat tire. You realize you don’t have your phone with you, and even worse, you don’t have a jack in the trunk. You literally have no way to fix your car, or even get help. Then, imagine that a police car drives up. Your first feeling is one of relief – here is someone who can help! Let’s imagine, though, that instead of offering help, the police officer says, “It’s time to fix that flat. If you don’t get it fixed in the next 30 minutes, we’ll tow your car and it will cost you $500 to get it back.”

Now, how do you feel? You’re going to get a “consequence” if you don’t fix the flat. But, can you fix the flat? No, you’re still in the same position you were moments before. You don’t have the tools that you need to do the job. And perhaps even more frustrating, the person you thought would help you is threatening you instead, and leaving you on your own to figure out what to do.

“Sure,” you may think, “threats of punishment can be very de-motivating.” So, let’s imagine further that another police car drives up, and this officer says, “No, no, let’s not punish for a flat tire. This person needs some positive motivation. Tell you what: you get that flat tire fixed in the next 30 minutes and we’ll give you a million dollars.”

Are you able now to fix your flat? No. You still don’t have the tools. And, you are likely becoming highly frustrated, perhaps agitated, and even less able to think of a solution to your problem. The only “help” offered by the authority figures is threats or promises. But none of that actually gives you what you need to fix the flat.

This is the position our kids find themselves in frequently. Unable to accomplish a task, and feeling hounded by authority figures that, instead of helping, impose rewards and punishments. Is it really any wonder that they begin to give up, fight back, become oppositional and have meltdowns? Not really, if you realize that they simply do not have the skills to do what is expected of them.

So, does this mean we just stop expecting? No, we keep our high expectations for our children and we help them acquire the skills they need to accomplish what they need to do.

There are many roads to skills teaching, and CPS is an excellent choice. While working together with an adult to find solutions to problems, kids gain skills in frustration tolerance, cognitive flexibility and problem-solving. These are life-long skills that will also help them learn to comply with directions and figure out what to do when they are having difficulties. And, perhaps most importantly, it will help them keep their cool when problems arise.

Do yourself and your family a favor by exploring Collaborative Problem Solving and learning what a tremendous difference in can make in your lives.

For further reading:

“The Explosive Child” by Ross Greene, PhD

“Lost at School” by Ross Greene, PhD

www.ThinkKids.org

www.LivesInTheBalance.org

 

Dysgraphia: When it's more than Bad Handwriting

When my son was in school, there wasn’t much information available about Dysgraphia. Now, there’s plenty, however, it’s still quite a confusing issue. Particularly since many professionals don’t really seem to be “on board” with Dysgraphia as an actual disability.

The College Board is very cut-and-dried. To them, dysgraphia is a fine motor skill deficit, period. No matter if a child has never been able to produce more than a paragraph using a pen or pencil; if testing doesn’t show a fine motor deficit, then that child will be handwriting their essay, thank-you-very-much. However, the fact that they even have dysgraphia listed as a disability is a step in the right direction. Just two years ago, they did not.

Many professionals agree with The College Board’s definition. So, when your child has problems with handwriting, they will test fine motor skills. This is appropriate, yes. What’s not appropriate is, if and when the test shows no fine motor delay, that they simply say, “Not dysgraphia, no fine motor delay, work harder.” Some occupational therapists just tell families, “We can’t help you with this.” Particularly if the child’s fine motor skills measure in the “average” range.

Yet the problem is very real, and very frustrating, especially for people who have something to say, and cannot get it out using a pen or pencil. It would be nice, and seems logical, to just let them use a computer for word processing, however, while some schools are happy to do this, others are not. And, you are still stuck with the problem of the SATs and other standardized tests requiring handwriting.

And, you’re also stuck with everyone else’s opinion about what you should do and their opinions about how important good handwriting is to being able to function as an adult: get a job, write a check (really?), go to the doctor, the DMV, I don’t know, the grocery store? Never mind that there are people with physical impairments who manage to actually get all these things accomplished: somehow if it’s neurological disability, like dysgraphia, many people think one simply cannot get along in the world without gaining that particular skill.

The National Center for Learning Disabilities explains how to know if your child may have dysgraphia. You’ll see that some of the symptoms - difficulty with proper spacing, poor understanding of upper and lowercase letters, saying words aloud while writing, difficulty thinking of words to write, unfinished or omitted words, difficulty with syntax structure and grammar, for example - really don’t have a lot to do with fine motor control. The National Institute of Neurological Disorders and Stroke agrees that it’s more than simply a fine motor difficulty.

So, since you and your child have to live in a world of not-so-accommodating others, as well as professionals who are not yet in agreement about what dysgraphia is or how to treat it, what to do? You have two options:

1) Therapy (that you might have to pay for yourself)

2) Advocate for accommodation, and teach your child to advocate for themselves

Therapy

Like any other neurological difficulty, dysgraphia is something that can be worked on: the earlier, the better. If you have a young child who has been diagnosed with an autism spectrum disorder, you can figure that they will most likely need extra help in this area, and start working on it while they’re young. The American Academy of Neurology reports that children with autism are more likely to have handwriting problems, so go ahead and be proactive.  

If your child is older, you already know if they are struggling in this area. As someone gets older, they may or may not benefit from therapy, so you’ll want to try therapy and also be mindful that you are not simply going through the motions and never getting anywhere. If you’ve worked on it for a couple of years with no real progress, perhaps it’s time to think about how to work around it. Many professionals who do understand about dysgraphia are now recommending accommodations over therapy.

The first step to obtaining therapy is testing. Wrightslaw does an excellent job of helping parents understand just what schools should be testing for when they test for dysgraphia: it’s not just fine motor skills. Keep in mind that if your child tests “average” then schools do not need to provide therapy, even if the child is struggling. This doesn’t necessarily mean your child wouldn’t benefit from therapy for dysgraphia, it just means that they aren’t quite “bad enough” to receive therapy for free.

If you need to find a therapy provider on your own, the International Dyslexia Association also provides help and information about dysgraphia. You can send them an email asking for information and a list of providers in your area.

There are things you can do with your child or even older child or adult to help with handwriting. Some parents report that using a Tomy Megasketcher helps their children practice letters without fatiguing. Kate Gladstone has developed a handwriting repair program designed for people, who, like herself, have neurological handwriting difficulties. This program is now available as an iPhone application.

 And, last but not least, something I've been wanting to try because I have a very awkward grip is The Writing Claw, a tool that helps maintain a tripod pencil grip. 

Advocate for Accommodations

Most colleges have no problem giving accommodations for dysgraphia: they will assign note-takers, allow a student to use a laptop in class, and allow a student to word-process written assignments and tests. They require recent documentation of disability, however, so be prepared to show it. And, your child has to be willing to ask for the accommodation, so part of your job is to teach your child how to ask for help when they need it. At the beginning of each semester, my son has to take an accommodation letter around to each professor. He balked at it at first; but through discussion realized that he truly needed the accommodation. He was really happy he had done so when he was able to get his math test grade changed because the teacher misread his answer.

Public schools vary in their willingness to accommodate, although I’ve found that they are much happier to let a student use a computer to word-process if they are not also being asked to provide therapy. Again, keep in mind that you’ll need really good documentation for the future, so be sure everything is clearly stated in your child’s IEP, and proper testing is done.

When asking for accommodations, arm yourself with information. This won’t help you with those SATs, however, it will help you everywhere else, so stay informed. The Learning Disabilities Association of America lists some good accommodations, and Susan Jones, M.Ed, wrote an excellent review of accommodations and modifications for dysgraphia for The Resource Room. And ABC News reports that “For Intelligent Children with Autism, Handwriting is Barrier.” 

If you go this route, be prepared to spend some of your time educating those who work with your child. Each new year brings new teachers who do not necessarily understand that your child is not being “lazy” or “messy” when his or her handwriting is almost illegible. You’ll need to be creative, too. Science lab notebooks, for example, presented a challenge for my son, until we got duplicate sheets, had him word-process his answers and then printed them out and pasted them on the pages. More work, yes. Taught him the value of neatness, absolutely. Neatness that he was actually able to accomplish.

If I had to explain my beliefs about disability, I think that might be it in a nutshell: work as hard as you can to overcome your difficulties, understand that others are always going to have their perceptions and you do have some responsibility to try to understand and accommodate them while seeking appropriate accommodations for yourself. 

An Autistic Dream

I wrote this two years ago, and during that time I think the autistic community has made some definite strides. The nomination of Ari Ne'eman to the National Council on Disability is one of these strides. I can't say enough about how fortunate our community is to have Ari working so tirelessly on our behalf. If we succeed in accomplishing my dream, Ari will have played a critical role in that. Please go check out the Autistic Self Advocacy Network (ASAN) for yourself, and support their efforts if you can.

An Autistic Dream

Almost forty-five years ago, Dr. Martin Luther King, Jr. had a dream that one day African Americans would enjoy equality, and today, Barack Obama is running for President. I believe Dr. King would be proud. Because of his dream, and the incredible drawing-together of blacks and whites alike to gain civil liberties for minorities, the United States of America is a very different place today than it was in 1963.

I, too, have a dream. A dream about acceptance and equality. A dream that one day autistics will not have to hide our true selves in fear and shame. A dream that one day parents will proudly say "my child is autistic" and look forward to understanding and support, instead of denial and exclusion. A dream that a man will say to his colleague, "I am autistic" and begin a dialog of communication and kindness, instead of back-stabbing and rumor.

I have a dream that research efforts will be spent on learning ways to communicate with autistics, rather than "cure" them. I have a dream that families will stop seeing their autistic children as typical children with a disabling flaw and begin to see them as they are: fundamentally different – neurologically different – and thus these families will start to see all the positive differences as well as the more difficult-to-understand ones.

I have a dream that people will understand that the autism can no more be removed from an autistic than "neurotypicalness" can be removed from a neurotypical person. Our brains are wired differently. Change our brains and you change who we are. I have a dream that one day, autistics will be judged – not by the size of their amygdala - but by the content of their character.

But, unless autistics are willing to come out and say "I am autistic" this dream will never become reality. Unless parents are willing to tell their children "you are autistic" this dream will die. Unless people are willing to stand up, and insist that autistics have basic human rights to freedom of expression – expression that just might include rocking and flapping and twirling around – then autistics will forever remain in the shadows.

Families will continue to hide autism from their children and acquaintances. Adults will continue to hide their autism from their co-workers and friends. All without ever realizing that their condition isn't really "hidden". All without realizing that the "typical" people know intrinsically that there is something very different about them. And that they are being labeled whether they choose the label or not.

So, I say – choose the label of Autism. Choose truth. Choose reality. Autism is not a bad word. It's a neurological difference. Autistics have made, and continue to make, incredible contributions to our society. We need autistics. And autistics need to be accepted and respected. Dream along with me, that one day, "autistic" will be just another word, and not a pejorative. That one day on a playground, a child will tell his companion, "I'm autistic" and the other child will say "Cool! Come on, race you to the swings."

Memory

It was once thought that autistics suffered from amnesia, however, that theory is no longer popular. It is now believed that our curious mix of memory ability or lack thereof has something to do with weak central coherence or executive functioning deficits. It’s possible that it has something to do with the ability to process emotions as well.

Apparently, the way the autistic memory makes them really, really good at some things, and really, really not-so-good at others. And, as you already know, autistics, or people-with-autism, if you prefer are not all the same. Cognitive abilities are all over the map, even within one single person, let alone within the entire community of people on the spectrum. Personally, I find this fascinating.

So, here’s what some people who are smarter than I am think. That contextual memory is impaired in people on the spectrum, meaning autistics have a hard time processing information within its context. This would explain why my son didn’t know he could get coffee from the coffee vending machine. It would also explain why my father doesn't know where he is if there’s a new landmark along a familiar route, even though all the other context is still the same. So, this theory makes some sense to me.

This problem with contextual memory makes life pretty difficult for some autistics, and the people who love them. Some people on the spectrum, kids, especially, have a hard time knowing if something happened yesterday or four years ago. This makes it seem almost as if their memory is too good, particularly if what they are remembering is upsetting.

So, what role does emotion play? A fairly big one, apparently. All people remember things more clearly if they are emotionally aroused. Certain factors can pretty much ensure that we will vividly remember an event forever. This type of memory is called a flashbulb memory; we all have them, most likely of September 11, 2001. 

So, working on building an emotional vocabulary can be helpful.

And, last but not least, people who are self-monitoring also have worse memories, which makes sense, since their attention is divided. I know that many people on the spectrum spend a good amount of time in self-monitoring.

So, what might help work towards better memory?

1. Keep a journal, recording events with details and emotions. Parents, have a running dialog with your children about what happened today, yesterday, and what will happen tomorrow, next week.

2. Keep a calendar on the wall and use it. Using visuals is important.

3. Keep expanding your emotional vocabulary if this is an issue. 

4. Read your journal; go back over events and reminisce. This can help cement the memories. Remember that this works for bad memories, too, so try not to obsess on those, unless you really want to remember them. 

5. You could try to make it a habit to notice context in the moment. What else is around, what else is happening, is the sun warm, are the birds singing, is there gravel or blacktop on the road? What time of year is it, where are you, who are you with, how are you feeling? Use all your senses.

6. If all else fails, use a sticky note.

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

 

 

Believe in Me

I’ve been trying to think: if there was one thing I could tell parents of individuals on the spectrum, what would it be? If there was one thing I could tell the people in my life?

 

Believe in me, that’s what it would be. Believe that I am doing my absolute best. Believe that I want to do what I am supposed to do, that I am trying harder than you can begin to imagine to do just that.

 

As Ross Greene and Stuart Ablon say in their book Treating Explosive Kids, “Children Do Well If They Can.” I wholeheartedly agree, and add that people do well if they can.

 

So, please, believe in me. Put aside any ideas that you have about manipulation, selfishness, wanting my own way, and believe that I want to please you. That what I really, really want is to do the right thing. Despite what you might have read about autism. Despite how I may come across to you. Despite that you may not get what you want from me, I am trying to give it to you. I am trying to give it to the world.

 

Believe that I care about others. Deeply. Even if I can’t express it, even if I look away and it seems as if I don’t care at all. Even if I can no longer speak to you. Believe that it hurts me when I miss the mark. Believe that I want to be understood and am so very wounded when I’m not.

 

Believe in me. And if you have one more thing to give me, please give me your respect, too.

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.”