The Boy Whose Brain Could Unlock Autism

IMAGINE BEING BORN into a world of bewildering, inescapable sensory overload, like a visitor from a much darker, calmer, quieter planet. Your mother’s eyes: a strobe light. Your father’s voice: a growling jackhammer. That cute little onesie everyone thinks is so soft? Sandpaper with diamond grit. And what about all that cooing and affection? A barrage of chaotic, indecipherable input, a cacophony of raw, unfilterable data.

Just to survive, you’d need to be excellent at detecting any pattern you could find in the frightful and oppressive noise. To stay sane, you’d have to control as much as possible, developing a rigid focus on detail, routine and repetition. Systems in which specific inputs produce predictable outputs would be far more attractive than human beings, with their mystifying and inconsistent demands and their haphazard behavior.

This, Markram and his wife, Kamila, argue, is what it’s like to be autistic.

They call it the “intense world” syndrome.

The behavior that results is not due to cognitive deficits—the prevailing view in autism research circles today—but the opposite, they say. Rather than being oblivious, autistic people take in too much and learn too fast. While they may appear bereft of emotion, the Markrams insist they are actually overwhelmed not only by their own emotions, but by the emotions of others.

Read the full article

The Real Social Security

It’s hard to avoid, especially when you are a child. You read about it, hear others talk about theirs, and are prompted to write, talk and answer questions about it. What is the subject of this insidious obsession? A best friend. Doesn’t everyone have one? Don’t get me wrong, I think best friends are wonderful. What I have difficulty with is the emphasis expressed to children about the need for one. The question, “Who is your best friend?” assumes that the child has one very special friend. Writing about what you like to do with your best friend is easy – if you actually have one. If you don’t, then the perception can be that something is lacking and you should try to obtain a best friend as soon as possible.

There are many wonderful children’s books describing the shared adventures of best friends. As a child I had the impression that everyone was supposed to have a best friend and if you didn’t, something was wrong with you. I felt the pressure to latch on to somebody so that I could have a ready answer when asked who my best friend was. Having a “best friend” was my goal, and I wasn’t particularly discerning in my selections.

In kindergarten, my best friend was Mike because he and I shared the same birthday and he gave me some pennies one time. In first grade, my best friend was Darryl, a blonde-haired, blue-eyed boy who held my hand under the table during music class and showed me how his eyes crossed when he took his glasses off. I thought that was so cool! After first grade Darryl’s family moved away so I had to find a new best friend and some other lucky person got to see Darryl’s crossed eyes.

There was an unspoken pressure to find a best friend replacement whenever the previous relationship cooled for any reason. By late elementary school, everyone understood that if you had a best friend you would have a seat saved for you even if you and your best buddy weren’t next to each other in line. There would be a spot reserved for you as your best friend placed a hand on the chair beside her and informed any would-be interlopers that the seat was saved. Before the teacher finished saying “Find a partner” for an activity, you and your best friend already knew you would pair up together. No one else even bothered asking you to be a partner since everyone understood that you would be with your best friend. You and your number one pal never had to wonder who you would eat lunch with or talk to at recess. Having a best friend was a relational social security that offered the assurance you would always have someone around.

For a child who struggles socially, making any friends let alone a best friend can be difficult. It’s complicated, because most of us have no idea how to teach our kids social skills that come naturally for most people. When you see your child try unsuccessfully to join a group or make a new friend, it is heartbreaking. How much should you try and intervene? You can’t make friends for your child, but sometimes your child doesn’t seem to be able to make a new friend by herself. Unless you’ve held a lonely child in your arms, knowing how badly he wants to have a friend but isn’t experiencing successful relationships it is hard to understand just how devastating it can be for that child and his parent. I’m afraid that some of that need for social security through having a best friend can follow us into adulthood. For example, my daughter got to know a girl in our homeschool support group and the two of them really hit it off. They had a lot in common and enjoyed being with each other. The new friend’s mother had been college roommates with another homeschool mom in the group, and those two mothers had already decided that their daughters would be best friends. My daughter watched as the other two girls were shuttled to each other’s houses for play dates and signed up for classes together at the local parks and recreation programs without a backward glance. These moms were not being deliberately unkind or exclusive. They were trying to give their daughters the kind of social security they had valued when they were growing up. There were quite a few moms in my homeschool support group who would not sign their children up for sports or other group activities unless their child’s best friend would be in the same group. The child with a best friend does not have to make an effort to include another child, because socially they are set. The child without a buddy in the group is more motivated to find another child who is at loose ends socially.

I tried to teach my children to look around and notice who might need a friend, and make an effort to include them. I was no doubt more sensitive to this than most, because I was a mother of one of the socially isolated children. Can you imagine the depth of sadness a parent feels when they are the only friend their child has? Truly, a good friend is an incredible blessing.

I get to know quite a few moms during my speaking engagements and my speech therapy practice. I’ve met some incredible women who agonize over their children’s lack of good relationships. Some children act in atypical ways because of their challenges such as autism or attention deficit disorder. Their moms work hard to teach them social skills, but their children continue to struggle and after awhile they are no longer invited to group social events because they are “different” and their behaviors make others uncomfortable. Now, in addition to isolated children there are increasingly isolated mothers.

As much as I’d like to believe it is the rare exception when an adult loses friendships because of her child, I know from personal experience that it happens frequently. Moms of special needs children need extra support, but often end up with less support because of their child’s differences that set him apart in a negative way. It’s a cycle that deserves to be interrupted.

This whole “best friend” situation can perpetuate the exclusion of those without one particular best friend. Maybe we could teach our children that even if they have a best friend they can still be friends with others and include them. Adults, even if your social needs are adequately met, I can guarantee you that there is someone in your life who longs to experience even a little of the camaraderie you share with your best friends. You and your child may not feel the need to add another friend to your life, but please look around anyway because someone undoubtedly needs your friendship. Can you share your social security with someone in need? If so, you just might change their lives – and teach your child how to love like Christ does along the way.

iPad Grant for kids with autism

When it comes to technology, I have way more ambition than skill. Getting an iPhone a couple years ago helped me see how even a novice user could find and use great apps. Diving further into the utility of technology for my personal enjoyment as well as my speech therapy practice, I was drawn to the iPad2.

Last spring my wonderful husband bought me an iPad2 (I may have given him a few helpful hints) and I dove into technology and apps with the aforementioned ambition. In addition to educational apps and therapy tools, I am impressed with the potential of the iPad2 to be used as a communication device. 

One big drawback with most communication devices is that they are bulky and heavy, therefore the children may not drag their devices with them wherever they go. I’ve also seen devices that are used primarily by adults who know the child well and can “read” them enough to select the page or icon needed. Basically when this happens, the child is communicating to an adult who then communicates with the augmentative communication device.

The iPad2, I think, will be (and already is for some of us) the Augmentative Communication device of the future. Thin and lightweight, it’s already ideal for portability. There are more communication apps becoming available daily, and they can be customized for individual needs. iPads are significantly less expensive than traditional devices and some insurance companies are catching on and starting to cover some of the costs.

Then there’s the cool factor (spoken like a true nerd still longing for coolness) that the iPad offers. LOTS of people have iPads or would like to, and children using them have devices that don’t look like “tools” but are appealing and versatile, and, well, just plain cool. On the spot, pictures can be taken and added to a communication app. Aides will not need extensive training for iPad use, because it is so user-friendly even a novice with technology (ahem, like myself) can easily learn to implement apps.

I came across a site,, and saw that the iTaalk Autism Foundation is giving away an iPad a day until December 31, 2011 for children diagnosed with autism. There is an application online at their website, along with more information about Check out the resources and training for parents and professionals after you read about the grant at the link below.

Facial Recognition and Social Implications

Most of us have times when it’s hard to recall someone’s name, although we recognize the face. We readily admit, “I’m terrible with names” as a disclaimer when we first meet someone so he won’t be offended in the future if his name slips out of our grasp. This difficulty with name recall is both common and understandable. Unless an individual’s name makes it from our working memory into our long term memory, and pretty quickly, we are not likely to remember it in the future. For most of us, it is easier to recall the visual information and appearance of another person’s face than the auditory information of a name. Sometimes we recognize someone but can’t remember the context in which we met them. Church? Community activity? Friend of a friend? Because this is such a common experience, most people are pretty forgiving if we’ve forgotten the name but at least show recognition that we have met before. Often, there is mutual forgetfulness and the other person does not remember our names, either. No harm done.
My son, Josh, has significant working memory challenges. I realized over time that my son not only was unable to recall names, neither could he readily recall faces. He had no difficulty recognizing those of us he interacted with on a regular basis, but for those he saw infrequently he honestly had no memory or context for knowing them. It would be unsettling for him when virtual strangers (to his mind) would call him by name and initiate a conversation. Josh has never been good at faking anything, so he would genuinely ask, “Do I know you?” or “I’m sorry, but have we met?” Unfortunately, this attempt to be polite and seek clarification had negative social implications. People naturally feel hurt when others don’t remember them, especially people whom they remember quite clearly and have shared past experiences. I remember a mother of one of my daughter’s friends coming up to me and telling me that Josh asked who she was and she told him “I’ve only known you for YEARS.” It was true, but months would go by in between each brief contact and Josh never transferred the information to his long-term memory so each contact was starting fresh – for him. If I told Josh who people were and when he had seen them before, it sometimes jogged a vague memory for him.
There is a name for this “face blindness”, and the term is “prosopagnosia”. In severe cases, individuals have difficulty recognizing their own family members, friends, and even themselves. Many people with autism, PDD, and Asperger Syndrome experience prosopagnosia. I guess Josh had a fairly mild version, and I wondered if what registered in his mind’s eye was like a snapshot of faces, rather than the more dynamic version of faces changing to reflect a variety of emotions. Since Josh used to have difficulty recognizing different emotions expressed on faces, I thought maybe he only had one still picture in his mind and if it didn’t match what he saw there was no recall. I don’t know for sure, and Josh has improved over the years. It’s too bad that there’s not facial recognition software we could install in our brains to help us make the connections. I have worked with many children with autism who focus on part of something rather than seeing the whole. If this happens when a child looks at a face, he may see just the nose, or only the mouth, and not how those parts comprise a face. I have had children stare at an object I’ve held in front of my face, without recognizing that there was a person holding the object. If a face is viewed as individual component parts without seeing the whole, that face is not likely to be recognized in the future.
For our verbal children with the language skills to express themselves, we can teach them strategies to ease the social tension. Having someone admit “I know lots of people have trouble remembering names, but I even have trouble remembering faces sometimes” may prepare others in advance so they won’t be offended or surprised when they have to reintroduce themselves. For our nonverbal or less verbal children, we can advocate for them by explaining the challenges of prosopagnosia and reassure others that it is not a personal slight when our children don’t acknowledge them with recognition. My hope is that when we explain that there is a neurological glitch, others will be more flexible and accepting and won’t misinterpret our struggling learner’s behaviors in a negative way.

Inexpensive Game You Can Make

Today I want to share an idea with you for an inexpensive game that you can make using simple household items. The inspiration for this game was a young boy I am working with to develop simple turn-taking skills. I wanted to begin by teaching him a short, simple game like Tic-Tac-Toe, but his fine motor skills aren’t yet developed enough for him to make the marks on a page without great effort. I wanted the game to be fun and easy for him to play so he would stay engaged in the learning activity. My young friend does better with 3-D manipulatives at this stage of development, so I took an empty cardboard egg carton and cut it to the size I wanted. That left me with a perfect grid for Tic-Tac-Toe as you can see in the picture above. Next, I gathered up blocks in two different colors so we could use those instead of writing X’s and O’s. I removed the label from an empty frosting can and washed it clean so I could store the blocks in it. The child and I took turns placing a block in one of the egg cup spots, working to get three in a row. The game is more visually appealing to the young child, and it’s easy to show when there are three blocks of the same color in a row. It also offers some tactile input for the hands-on learner, and removes the demand of writing for the child with fine motor difficulties. If you don’t have blocks, you could substitute two different colors of another object such as milk caps or pom-poms. Just find something that will fit within the egg carton space and that is available in two colors, and you are set to go.

For some children, this game can be used to focus on taking turns without the added task of learning the rules for Tic-Tac-Toe. In that case, you don’t even need to sort manipulatives by color since you just need objects that are small enough to fit in the egg carton compartments. The simple back and forth of placing items might be a starting point for some children who have difficulty sustaining attention and interacting with others. For children on the autism spectrum, this is one more way to work on extending interactions and giving a sense of task completion.

In addition to using this game to teach Tic-Tac-Toe and turn-taking, you could use it as a reinforcer. Each time the child completes a task, they could put a block in the egg carton. Another idea is to put a number of blocks in the egg carton to represent tasks the child is asked to do, and remove one block each time another task is completed. When the carton is empty, it’s break time. Put some non-skid shelf liner under the carton to stabilize it so it doesn’t slip around too much. For children with fine motor challenges, I’ve used Velcro on the bottom of each egg cup and stuck the egg carton onto strips of Velcro on a plastic cafeteria tray so the egg carton stays put while the child works with it.

There you go! An easy and inexpensive game that can be used multiple ways and made with items you probably already have on hand! Have fun!

Sensory Issue: He’s sniffing EVERYTHING!

A friend contacted me recently to ask for some suggestions for helping her son. He is on the autism spectrum and recently has started sniffing all kinds of things, even dropping to all fours to sniff the floor at Wal-Mart and stopping to sniff at light poles. This behavior is especially embarrassing to his siblings. My friend asked her son to stop sniffing things and he told her he can’t. She came to me to see if I could suggest something inexpensive to try with her son. Here is an excerpt from my reply to her:
You are both right – he needs to stop the gross/embarrassing behavior, and…he can’t. I always try to think about how every behavior, no matter how quirky, is meeting some kind of need. We do things that are somehow rewarding to us. With that in mind, you can’t just tell a child to stop smelling objects because something in his brain is telling him to do those things. But in your family, in our society, those things will never be acceptable. So you have to try to come up with something that meets those sensory needs and is also an acceptable behavior. Some of the solutions might still be considered “quirky”, but there are degrees of quirky and some are easier to take than others. For the sniffing, try soaking a cotton ball in something with a distinct smell and keep it in a snack-size ziploc bag for portability and easy access. You might want to have several separate bags with different smells, and when your son feels the urge to smell something you can redirect him to one of the cotton balls. (Ideas include: cologne, coffee, air freshener, extracts – peppermint, lemon, cinnamon.) You know what smells your child can handle and what ones might set him off, so you choose what works for you. If you discover a favorite scent, you could apply it to a handkerchief or piece of material that he can keep in a pocket and pull out to sniff as needed.
My friend decided to try various aromas on cotton balls and used a large pill case to house each scent separately. The pictures above show her solution, and here’s what she says about it.

I bought a pill holder and put cottonballs scented with different things inside each of the seven compartments.
Now, whenever my son has the urge to sniff, he can grab that, open one, and smell away. I used vanilla flavoring, coconut, perfume, lotion….anything that had a strong smell and I tried to find some different from each other. Still quirky, yes….especially in public…but way less quirky than dropping to all fours and smelling a floor in public.

To Tell, or Not to Tell?

i26I’ve met many parents who are pretty sure their child has AD/HD or some other learning challenge but they are hesitant to make it official by having their child evaluated and diagnosed. The fear that a label may limit their child, be inaccurate, or be used in discriminatory ways is valid. When my son, Josh, was approaching school age I thought about the advantages of private schools with smaller class sizes. Several people suggested that I go ahead and enroll him without telling the school personnel about his AD/HD diagnosis so they couldn’t turn him down. That was before we knew he also had an auditory processing disorder. I was assured that once he was enrolled in the school, they couldn’t kick him out just because he had a diagnosis and they would be forced to work with him. Wow! For one thing, Josh was pretty easy to pick out of a group as being different than his peers. I’d give it 5 minutes tops before things became unavoidably noticeable. So basically I would have had to keep him out of sight until school had officially started. Then there was the whole idea of the people he would be spending hours with each day being tricked into having a student that they weren’t prepared for and apparently didn’t feel equipped to deal with in their classroom. That made me feel sorry for Josh and for the teachers, since having someone who was “forced” to work with my child because I had hidden some vital information from them just didn’t sit well with me. I loved that boy, and the thought of sending him somewhere that he might not be wanted didn’t make sense to me. I had the same dilemma when it came time for Sunday School at church. I didn’t want to bias the teachers against Josh by telling them all his struggles, so I coached him on the way there and dropped him off like all the other parents with their children. The Sunday School teachers, bless them all, are volunteers in the church and most don’t have training as educators – and for most kids that’s just fine. But to do the “drop and run” with a special needs or challenging child is not a good idea, as I came to realize. Every week, the other parents would pick up their children and happily leave. When I came to pick up Josh, I inevitably got pulled to the side and told, “I need to talk to you about Josh.” Then I heard, week after week, a full litany of complaints from frustrated and bewildered teachers who were describing things that were not unusual for Josh but were not typical for most children. For example, Josh was not adept at sitting still for long. He was not deliberately disruptive and was never disrespectful, but his need to stand at the table while coloring his page instead of sitting in a chair like everyone else was considered problematic. His sensory issues led him to sit at the back of the group on his carpet square, and everyone else was huddled together and bumping into each other which Josh was carefully trying to avoid. But that meant he wasn’t “with” the group because he had made a row of one – just himself! And the list would go on and on until I was finally allowed to leave with my miserable son who knew that somehow just by being who he was he had screwed up again and people were unhappy with him. Those experiences led me to advocate more and be preemptive with anyone I left Josh with for any length of time. When there was a sub or a new Sunday School teacher, I made a point of telling them a bit about Josh and strategies that would help them, and I was careful not to dwell on the negatives. I shared Josh’s strengths, too, for I found that if I became negative about my son others felt free to share every little thing they saw as being wrong or weird about him. I was well aware of Josh’s struggles and it served no purpose other than to discourage me when others felt the need to complain about him. All this, and he wasn’t even doing anything “bad” on purpose! When someone was going on and on about all the things Josh did or did not do, I learned to quietly point out something that he had done right, or I’d share something that Josh had enjoyed learning in their class previously. This seemed to derail some of the negativity some of the time. Just as with our kids, nothing works all of the time but something will work some of the time. We need strategies for working with those who are in a position to care for our children, and hope that something will work some of the time. Whether you are a natural advocate or a reluctant one, if you have a child with a learning difference or special challenges, you must be an advocate unless and until your child one day develops the skills to advocate for himself. In my experience, being deliberate in my advocacy was hard but preferable to what happened when I just waited and hoped things would work out for the best.

Socialization for ADD/Aspergers/Autistic kids

We just got back from the Homeschooling conference in Indianapolis, where HUMom presented a workshop entitled “When Socialization <span style=”font-style: italic;”>IS</span> an Issue.”  Kids with ADD, Aspergers, Autism, learning disabilities or just plain quirkiness often have difficulties relating to others on a social level.  This can cause tremendous stress on the family and frustration to the parents as well as the kids.

HUMom suggested many ideas for helping to train social skills, such as role playing, identification of non-verbal communication, recognizing emotional cues, teaching through literature, rehearsal, using photos & videos to study social situations, games that work on social skills (Moods, Express Yourself, the Ungame, etc.) and social stories written together by parent &amp; child.  It was well received and there were many questions and good discussion afterwards.

Has anyone else discovered effective ways of training social skills?

Update: Current events

Sorry for the long absence.

Starting last August HUMom has experienced some drastic health problems, which resulted in extreme fatigue.  We have been through four doctors, some medical procedures and many treatments & tests to try and find the cause.  My neuro-typical daughter had wrist surgery and I had back surgery last week, so we have been having a swell time.

Wish you were here!

Anyway, “Anonymous” posted a comment & article on the last thread and one point stood out to me as an interesting topic.  Namely, <span style=”font-style: italic;”><span style=”font-weight: bold;”>”Why is ADHD on the increase?”
<span style=”font-style: italic;”>
</span></span></span>The article’s author maintains that there is no increase, rather we are systematically identifying and labeling children with these behaviors, thus the size of the group is growing because we are looking for them more efficiently.

While this may be partial explanation, I do not buy it totally.  Here are two thoughts (not quite random) on the subject, to be expanded upon at some later date.

1)  It has struck me that there appears to be a corrolation between the rise in ADHD and the Video generation.  I grew up with arcade games Pong, Space Invaders, sitcoms, movies, which rapidly gave way to First-Person-Shooter games on the PC and DDR (Dance Dance Revolution).  It is undeniable that hand-eye coordination is stimulated by such activities, but I wonder what effect they have on rapid-eye movement and brain chemistry.   I have absolutely zero research to support or deny this idea, but it seems like a great coincidence to me.

2)  There is much more scientific research and evidence to indicate a connection between ADHD and Autism, more to the point, that both conditions lie somewhere on a common continuum.  The tremendous increase in occurance of Autism is proven fact, and closely follows the growth of manditory immunizations.  I have read studies suggesting while vacines are not connected to this rise in Autism, the mercury derivitive used to extend the shelf life of vacines is extremely suspect.

When I get a chance, I will post links to some studies.

Are there any other theories out there?