Recently in autism Category
May 18, 2013
First posted on Technorati as Could Google Glass Work for Someone with Autism?
Google Glass has been in the news quite a bit lately, with concerns about privacy, the "cool" factor, and some businesses already wanting to ban the thing before it hits mainstream.
Sergey Brin, co-founder of Google, praised Glass for it's more socially acceptable use over smartphones.
Glass reacts to your eye movement, finger gestures on the side, or voice commands. The video Google provides is pretty compelling, with lots of exciting things being done and hands-free computing being done at the same time.
But it got me thinking: could someone with autism use Google Glass? Could someone with a disability use Glass?
Smartphones can be very enabling in many cases. Apple, for one, uses Voiceover to make it possible to use an iOS device if you are blind. And while Android doesn't seem to have the same technology built in, there are code projects that are available for download. Being able to interact with the device directly with or without looking at it is ideal. Can Glass do the same thing?
A marketing professor at Gallaudet University (a University for the deaf and hard of hearing) presented the Google Glass demonstration videos to his Intro to Marketing classes. The response was almost unanimous: It wasn't deaf friendly. Anything that requires spoken word for interaction would be unaccessible to someone who communicates through sign language. That means that this current iteration of Glass at least would only provide minimum support for someone who doesn't communicate verbally.
But could it be used by someone with autism? Smartphones and tablets have been adopted with gusto by the autism community, because they are intuitive to use and allow persons on the spectrum who cannot communicate verbally interact with their world. The capacitive screen allows for accuracy without an implement beyond the human finger, and the display is a natural place to look when "reading".
Now take Glass.
- Glass uses eye-tracking technology, not a useful bit of tech for someone who has a hard time with eye contact as is common with those with autism.
- Glass can use voice commands, but if you don't speak, it's not much use.
- Glass can use finger gestures on the side, but it requires more fine motor skills than touching a tablet, and a direct correlation between what you see and what you do. While this is natural with the keyboard and mouse crowd, a tablet is far more useful in this regard, you are "touching" the "thing" with which you interact, not touching an interface point on the side of your head when the thing is in front of you.
- Glass requires something to touch you. That alone is a deal breaker with a community that is known for it's sensitivity to sensory events. Speaking for my children alone, I think it would be difficult to get my eldest to wear it at all.
There would be a lot of hurdles to overcome in order to make Glass accessible to someone with autism. But once accessible, would it be of benefit? Honestly, I can't see a situation when using Glass would help someone with autism beyond displaying social stories in real time with an augmented reality (which would be awesome!).
If given the choice, right now, I don't think I would recommend anyone get Google Glass for someone with autism, at least until the interface is worked out. And even then, only if an augmented reality app was invented with built-in social stories based on location were available. Given that as the killer autism app, it would be worth a look. But given a choice between a tablet and Glass? The tablet's versatility wins hands down.
April 8, 2013
I am hesitant at best to go to a diner with our boys on the spectrum. The noise is severe, they are often very busy, and the service is often very slow. Normally this isn't a problem, because it gives the patrons a chance to talk, gossip, and socialize. For people with autism, however, the noise is painful, the wait unbearable.
This past week we had some family visit, and at the end of their visit we went out to breakfast at Denny's on Kearny Villa Road and Clairemont Mesa Boulevard. The diner was quiet, as it was early in the morning, with only a few patrons. We had a large group (10), so it took them some time to arrange our seats.
When we sat down, my oldest started to exhibit signs of a meltdown. We made our drink order, and shortly afterward our server came and got our food order. After making our order, I specifically asked that the boy's food be brought out first because they have autism and it would alleviate any problems with the wait. Our server, Andrea, took note and went away.
As the family talked, I took my oldest for a walk as we waited for our food. We walked to the rest room, he washed his hands, and we walked back. Shortly after returning to our seats, the food came for the boys! I was surprised, as this is the first time when I have asked for the boy's food first at a restaurant, and it actually came first. I was very impressed.
But there was a slight problem: the cooks made the breakfast with pancakes instead of toast. Andrea apologized, and said she didn't want to take the plates back, but would bring out the toast when it was done. This was also very impressive, as we were not charged for the pancakes. Andrea did her best to make sure our boys were comfortable.
When we left, I made sure her manager knew just how helpful Andrea was in accommodating our son's needs. She did a stellar job, and I hope she is commended for it.
As I said earlier, we don't often go to diners as they are perfect places for meltdowns. But this Denny's experience was perhaps the best possible experience we could have had, with staff that were understanding and willing to accommodate. I would recommend them to any family who have children with autism in the San Diego area.
April 2, 2013
It's World Autism Awareness Day today, April 2nd. That means it's time for the World to focus on what autism is, how it impacts families, and what we need to do as a world community to help those who are unable to help themselves.
According to the latest CDC estimates, 1 in 50 children between the ages of 6 and 17 have autism, with the official number for all children still holding at 1 in 88. Think about that. Put 50 first graders in a room, and at least one will have autism. That's where we are.
So where do we go? A lot of energy is focused on finding out why autism is so common, and from there what action needs to be taken. Some people talk of cures, some people talk of lawsuits, others say it's who they are and don't try to "cure" me. Personally, the causes don't mean a whole lot for those that currently have autism, as they just need to know how to manage themselves in this world.
But in order for that to happen, they need to find a place. Our children need to find schools that will educate them based on their needs. They need healthcare that is supportive, willing to provide for the very expensive costs of therapy necessary to help these remarkable children succeed. They need local, State, and federal governments who are understanding and willing to create this environment to help them succeed. They need ordinary people like you and me to be willing to accept them for who they are, and willing to help when it's needed, and give them space when they need it.
Tonight, many cities around the world will switch their white lighting around their buildings to blue. It will look pretty, and many people will feel they have done their duty. Much like wearing pink for Breast Cancer Awareness Month, green for Saint Patrick's Day, etc. Some will buy ribbons, stickers, buttons, or magnets to display their support for this one day for autism awareness. Tweets, walls, and other social media posts will be dripping with support and awareness messages. It's great, because the news is getting out there.
But it's not enough to wear blue, use blue lightbulbs, or buy a ribbon. While we take this day to focus on autism, we need to focus on helping those with autism get the education they need in the best environment, get jobs, be productive, and feel comfortable in society. Autism isn't a one day thing, ask any parent with a child on the spectrum. It's an every minute thing, because you are "on" every minute of every day. Autism is on every minute of every day.
So, today, please show your support for those with autism, and continue that support tomorrow, the next day, and so on. Children with autism are very special children, and deserve to be seen as children, not a diagnosis.
March 13, 2013
I was disgusted to read in Forbes of a treatment center that uses electroshock therapy, known as "contingent shock" in the United States today as a form of therapy. The founder of this treatment center, a follower of B. F. Skinner (a famous behaviorist) has been using negative reinforcement techniques for years to try and resolve behavior problems with children who have developmental disabilities or mental illness.
While electroconvulsive therapy has been used for years in the treatment of people with mental disorders or depression, it's a therapy done when the patient is anesthesia and usually only as a last resort as it remains controversial. Contingent shock therapy, on the other hand, is given to someone while they are conscious, aware, and performing undesirable behaviors.
The therapy is based on the work of B. F. Skinner's "Skinner Box" he developed during his research time at Harvard in the 1930's which placed lab rats in a box with an floor that could be charged with electricity anytime the rodent did a behavior that was undesirable. Slowly, the rodent would learn not to do the behavior, and therefore not get shocked.
Since the early 1900's, when autism was first used to describe a range of psychological conditions, it had a stigma associated with mental illness. In 1911, Eugen Bleuler first used the term to refer to a group of symptoms of schizophrenia. In the 1940's, researchers in the US used the term to describe children with emotional or social problems, often called pediatric schizophrenia. And because of this, as of the 1960's, doctors had a direct link between autism and schizophrenia in their minds.
So during the 1960's and 1970's, research into autism treatments focused on medications like LSD and negative (punishment) behavior change techniques like electric shocks, pinching, spanking, and even breaking vials of ammonia under the nose. Contingent shock, which is a shock administered after an undesirable behavior has begun or happened, is a direct decedent of this practice.
What's interesting is research exists out there to suggest that any gains using these methods are temporary, and not permanent. In 1968 Todd Risley found in his research that there is no permanent gain in behavior when people receive these electric shocks. This was back in 1968 with the research was fresh, the technique in vogue, and the results were quickly ascertained. Lichstein and Schreibman found in 1976 that while the techniques seemed to work, it was often very traumatic for the clinician (often more so) than the patient.
The technique remains controversial, particularly since the U.N. has now declared the therapy as practiced by the Judge Rotenberg Center is torture as outlined in the U.N. Convention against Torture. Why? Because the voltage used in the personal devices administering the electric shock can and does leave a mark that can last for days.
So, the question remains, should this method of treatment be allowed, given the current application and research? Has any other research been done? And even if the research suggests electrocuting someone to modify behavior works, should it be used in this day and age when spanking is strongly discouraged?
I've seen a couple more recent articles, one by the founder of the Judge Rotenberg Center, and one other, that extolled the virtues of contingent shock therapy. But I can't get past the image presented in the book, The Alliance where whole masses were controlled using electric shocks embedded in the brain. It's an extreme jump I admit, but it's still the image that comes to my mind.
March 8, 2013
Article first published as Auti-Sim: Providing Insight to Autism World on Technorati.
As a parent, you want to understand your children. You want to comprehend what is going through their minds, and how to reach them. As a parent of a child with autism you have to try that much more to understand why going into a supermarket means dealing with meltdowns, and walking in crowded parks means lots of pressure. At times, you are so bewildered that you just throw up your hands and sigh.
In order to help alleviate that frustration, A new "game" has been developed to help people see the world from the eyes of a child with autism. Called Auti-Sim, it features you, a child with autism, in a playground full of children.
The premise is simple, try to engage with the kids (walk up to them) while they are playing. The reality is somewhat complicated: the noise is too much to bear and your vision becomes blurred and pixelated. Now, I don't honestly believe that children with autism have blurry vision in social situations, but it's a visual illustration of how the world around them changes when not in a comfortable situation.
It quickly becomes clear that staying on the outside of the action, along the edges of the playground, is the "safest" place to be. Things are clearer there, less unbearable in noise and vision. In a word, being antisocial makes you feel more comfortable.
After playing with the controls, hearing the screams, and realizing that the more time I spend trying to tough it out the longer it takes to calm down, I think I gained a little insight into the world that my boys currently live. For those looking to gain such an insight, I would definitely recommend this game.
March 2, 2013
Most parents go through a lot of stress. Kids, as they develop their own personalities, are likely to do things that you as a parent don't want them to do. They make messes as they explore their world and skills, they don't see direct correlations between their actions and consequences, and they can be defiant when things are not going their way. That is the challenge of parenting, the nature of which is to teach your children the social limits to their behaviors and help them understand the consequences of their actions.
But what if your child is on the autism spectrum? What if your child can't understand the necessary social framework in which their limits to behavior should remain? Suppose your child is unable to comprehend a correlation between their actions and consequences? Instead of learning how to stay within socially acceptable limits of behavior, and constantly "act out" or throw tantrums through "meltdowns" because they can't communicate their displeasure in any other way. This is the stressful world of the parent with a child on the autism spectrum.
It's different for every parent, because every child with autism is different, but we all experience the same thing: stress. A parent recently asked Dr. Joti Samra of the Globe and Mail how they can deal with the stress of having a child with autism?
His response was very informative. First, he realizes that parents who have autism experience more stress and are more susceptible to negative outcomes than parents of children with other disabilities (Dunn et al, Moderators of Stress in Parents of Children with Autism, Community Mental Health Journal, Vol. 37, No. 1, Febuary 2001.). As such, they are more likely to fall into depression, social isolation, and have negative effects on their spousal relationship.
Next, he outlined ways to find relief from stressful situations, which was to find time for yourself. Take a run, take in a movie, meet some friends, do something you enjoy. My wife and I try to find time for ourselves when we can, whether it's meet up for lunch while the kids are in school or try doing something with the kids that we all will enjoy. Other things you can try is meditation, yoga, or tai chi. Whatever helps you relax and relieve your stress, give it a try.
Another part of dealing with stress is getting support from friends, family, and your spouse or partner. In fact, having support within the marital relationship has been found to be related to better personal and marital adaptation in families with developmentally disabled boys and to live satisfaction among parents of children with autism (Dunn, 2001). That may sound crazy in a world where marriage is in decline, and even then 41% will likely end in divorce according to the CDC, but it turns out that having spouses who is committed legally and emotionally to each other helps cope with the stressful demands of autism.
That fact resonated the most with me. Being married and having both of you support each other while feeling the stress and frustration of children with autism has been scientifically proven to be more effective than any other support group. Not that I'm saying isolate your family completely, but it is an encouraging statistic.
So what do we do? We spend a lot of weekends helping the kids experience their new city. We spend a lot of time at the beach, the tide pools, and by the ocean. At first it was a challenge with our youngest because of his fear of waves, but it's become a great therapy for our family. We also spend time at SeaWorld San Diego, the San Diego Zoo and Safari Park, Balboa Park, Point Loma, and exploring the many ethnic markets in the city. There are lots of other places we can explore, and with each new experience, we find ways to enjoy ourselves while keeping the kids stimulated and interested in their world around them.
At home, we spend time playing games, lots of tickling, and try to teach the correlation between behavior and consequences. It's often frustrating, but once in a while there is a glimmer of understanding, behavior modification, and lots of hugs. Without my wife, I don't think we would have gotten so far, and I like to think I've been of some help for her.
And in the end, we enjoy watching British Comedies as a family, which is a trigger to the kids to go to sleep. With an early bed time, my wife and I have some time to decompress, relax, and let the stress of the day work it's way out. It means early mornings, but so long as we get enough sleep, it works out.
February 22, 2013
Article first published as Romo's Potential for Autism on Technorati.
Often I have written about mobile applications and their impact on children with autism. Some have been pretty basic, some have been very useful, and some have been just plain fun. All of them have been smartphone or tablet related, which highlights the usefulness of this new medium in helping children on the spectrum.
But something I saw this morning, at least in my mind, has the potential to trump them all. The good folks at Romotive in Las Vegas, NV have developed a robot, Romo, that uses an iPhone 4S/4/3GS or iPod Touch 4th Generation, an app, and a mobile base. With this combination, they have created a whole new ecosystem based on behaviors and interactions that make Romo a great "pet". The BusinessInsider video played to using it as a toy, but I saw something more in that expressive face.
But here is the thing: studies have suggested that children with autism find it easier to interact with a robot than with a human person. This one from Pragmatics and Cognition evaluates the successes of the Aurora project, using autonomous mobile robots as therapeutic tools for children with autism.
Recent studies such as those outlined in this survey have shown that robots are being welcomed as an interaction tool, but it's still too young a technology to see effects over the long term. Still, short term results are encouraging.
The conclusion was one of hope, but realistically lowering expectations that any one device can be a universal device to help children on the spectrum. This is mostly because autism runs across to many demographics in so many areas it's difficult to develop a platform that can meet all your needs.
Robots have been developed to follow these paths, such as Bandit, Keepon, and KASPAR all have focused on those study findings, and built robots to help kids interact and learn emotions. They have been great, but they also tend to be pricey and limited to the proprietary code developed for that robot. Great for a large budget, not practical for the family at home or an underfunded school district.
But mobile applications have proven that one device category, the mobile device (iOS, Android, Windows Phone, or WebOS) with a clear development SDK can provide an ecosystem with variety. At my last count there were over 2,000 apps for iOS and over 1,000 apps for Android that focus specifically on autism. The Aurora project was conducted in 2004, before this interactive, prolific environment had been introduced.
And now, with the introduction of Romo, we have integrated this new platform into an autonomous robot that is (relatively) inexpensive, and very open. Romo has it's own development SDK to allow development of new apps for Romo to use. The autism community, who have already been diligent in developing apps for mobile devices, now have a new dimension to their development: an interactive, personal robot.
There are a lot of other possible applications for the Robot that I can see (recall the personal presence device from Big Bang Theory and the Verizon commercial?), but this one makes me really excited. The price tag of $149.00 is reasonable for the device, but still a little pricey for a "toy", if viewed in that context. But if you see it as a way to interact with your child on the spectrum without having them look away, it just might be worth it.
If there is anyone out there that has a Romo or robot device that they use for their child with autism, please let us all know what works and what doesn't work. I'm sure we would all be interested in hearing details.
December 22, 2012
Article first published as Autism as Excuse: The Social Fallout of Newtown Shooting on Technorati.
The tragedy of December 14th, the murder of 20 children and 6 adults, has spurred a lot of feelings. I was devastated, worried about my own children, and concern for the families and children in Newtown, Connecticut. And then, based on hear-say, major media outlets have latched onto the possibility of the shooter having Aspergers, a form of autism. And while the White House and members of Congress prepare drafts of legislation to limit gun sales, this sigma of "autism kills" is slowly starting to take hold as reported by CNN. And that scares me, scares me more than you can know.
You see, autism is a very mysterious disorder. No one really knows a whole lot about it, other than those with autism tend to be "weird". They stand out socially, are often targets for bullies, and live with a lot of anxiety. Because they are so different and unable to defend themselves, they become easy targets, and not just by bullies. I see fights against gun control trying to redirect the stigma of unhinged murderers toward the alleged autism of the shooter, even though there are no confirmed reports (as of this writing) that the shooter intact had autism.
Of course, as experts have constantly cited, autism is not a psychosis, meaning autism does not "cause" violent behavior, psychotic episodes, and therefore will not cause someone to become homicidal. The evidence presented by parents, therapists, psychologists, neurologists, and psychiatrists all state that those with autism are more likely to hurt themselves than anyone else.
But, as the original article from CNN stated, children (and most likely parents) are already looking to blame autism for the shooter's actions. Once adults start to believe it, as with various unsubstantiated claims to the cause of autism, politicians will begin to believe it for those votes. Once politicians start to believe things, true or not, it becomes ingrained in law.
I don't know what political fallout will come of this horrific tragedy. Most likely there will be some restrictions for firearms and ammunition. That's a good start. But behind the scenes, more kids with autism will be bullied. More kids with autism will be denied schooling services, healthcare services, and support services. All because of an assumption made based on unsubstantiated claims.
And that, more than the inability to purchase a semi-automatic assault weapon with the ability to shoot over 200 rounds in a single clip, is what scares me.
December 17, 2012
Article first published as How the Grinch Stole Christmas: Review on Technorati.
Today we experienced a beloved tradition in San Diego, the performance at the Old Globe Theater of How the Grinch Stole Christmas. This year is their 15th anniversary of the performance, and this afternoon was a special performance. It was the autism friendly matinee performance.
Going into the play, I was a little concerned about the performance. I've seen the holiday special which is 30 minutes (or 23 minutes), and I've seen the movie (which I did not like). I was concerned it would be too much like the movie. But, as it was live theater, I really wanted to like it. And I didn't. I loved it.
The Old Globe theater is small, and very cozy. It's smaller than my high school stage, making it a more intimate experience with the performance. Different in this production compared to their normal productions would be the lower sound volume and house lights up slightly. Also, there were more seats available for people to move about during the performance if necessary, separated sensory areas for those who need it, and free toys for the kids.
When we walked into the theater, the certain was decorated as the inside jacket of the hardcover book. The kids settled in fairly well, though our youngest was a little squirmy. It was exciting for our oldest to hear the orchestra tune up, as I pointed out the clarinet, he giggled. Before the performance, the San Diego Autism Society presented the Old Globe a plaque to thank them for their dedication and contribution to the autism community.
Then it started. The Old Max came onto the stage, and opened the performance. Then the Who's came on, singing about how much they loved Christmas. We then meet Young Max, and finally the Grinch. Our eldest loved him. He did an amazing performance, both he and Max. The whole cast was fabulous, making the performance amazing!
The story, at least to my mind, was the basis for the Movie, and not the other way around. And the musical was much better (in my opinion). I did miss some of the performance because my youngest couldn't sit still for a full hour and a half (though he did make it through a full hour). During those breaks the volunteer staff was very helpful, and we even got to meet Max while he was "back stage" (in the lobby between showings). It was amazing.
Near the end of the performance I had my oldest son on my back, standing against the wall, clapping while he watched the rest of the performance from behind my left ear. At the end of the performance, as we left, they gave each of our boys their own hardcopy of How the Grinch Stole Christmas. And, as we walked out to the parking lot, the bell tower at Balboa Park started to play, "Welcome Christmas (Fah Who Doraze)".
It's now three hours since the performance, and I'm still taken by it. It was fantastic, and something the actors at the Old Globe should be proud.
December 15, 2012
Article first published as Autism and Trauma: Helping a Child With Autism Understand the Shooting in Connecticut on Technorati.
The President of the United States did perhaps the most difficult task of any presidency today, and provided remarks regarding the murder of 18 children at an elementary school in Newtown, Connecticut. The President was perhaps the most presidential in his remarks, the most human in his grief, that I have ever seen. His comments were right, in that every parent is, or should be, devastated by the traumatic events today.
My wife texted me a message to let me know she was grateful that we no longer watch the news with the kids regularly. Today, it would have been devastating to them, seeing children their own age in distress. While I become enraged and tearful about it, our children, both of whom have autism, would regress at the display of so much trauma.
Children with autism feel grief, pain, loss, and fear just like all other children. And even just by watching traumatic news or events in movies, they can react. Even worse are those children who experience such trauma. And given the statistical likelihood, there were at least a couple children with autism at that elementary school.
As a parent, I want to protect my children from all harm, real or imagined. But when something traumatic does happen in their lives, it's an opportunity to help them deal with their grief and loss, just as you would any other child.
Gray Miller has a post on Love to Know Autism that talks about it called Being Autistic and Dealing with Death. The article is brilliant, talking about ways to help your child understand what the loss means, and looking for signs of grief that may or may not be apparent.
Unfortunately tragedy cannot be avoided, and happens too often in the world in which we live. But we can do our best to help our children with autism understand what has happened, what it means, and how to deal with their emotions in a constructive way. Just as with anything else in their lives, it will take a strong support system to help them work through it.
The tragedy in Connecticut is truly heartbreaking. My prayers are out there for all the students and parents, teachers, family, and friends of those who were lost. And I have a special little prayer for those who have autism as they try to heal from this horrible, terrible act.