Learning by Doing

"To 'learn from experience' is to make a backward and forward connection between what we do to things and what we enjoy or suffer from things in consequence. Under such conditions, doing becomes a trying; an experiment with the world to find out what it is like; the undergoing becomes instruction--discovery of the connection of things." John Dewey wrote those words about education way back in 1916 and they are still very relevant today. And even more so regarding the learning process of autistic persons. While rote learning is important in autism to master routines, it is also important to recognize that people with autism need to learn by actually doing things - making things, exploring things, and capitalizing on their passions and curiosity to figure out how the world works.

The mystery of how learning actually occurs is the subject of many education policies, but as John Dewey noted in the last century, we really understand things best and retain that information when we actually experience those things. Simply put, we learn by doing. The more real experiences we can help our students have, the better their understanding of their environment. They may not be able to explain the how and why, but that doesn't mean they don't get it. Hands on activities are critical to learning - from facilitating play with 3 dimensional characters,  figuring out how to put simple and complex puzzles together, building with Legos to building complicated machines. You just can't learn to ride a bike by learning the word b-i--k-e or watching a video - you've got to get on one and get going.

So many of our students give us a road map for their learning style through their 'restricted interests and activities,' which is part of their diagnosis. Perhaps if we look at 'restricted interests and activities' and change those works to something different - passion, focus and action oriented -  we'd have a better idea of how to approach their teaching. It is all in the way we choose to frame it.

Last week, a friend introduced me via the internet to a 14 year old named Joey who has been involved in Detroit's Maker Faire for kids on the spectrum who enjoy making things.  Joey writes his own blog (http://lookwhatjoeysmaking.blogspot.com/) and while the spelling is not perfect, the enthusiasm is clear and his creations are very imaginative. How wonderful is it to have an outlet for all that creative energy! And how obvious is it that Joey has mastered many concepts via his creations. My guess is that Joey is one of those kids who learn by doing things and figures out the how and why of things through his experience. With kids on the spectrum, most concepts are better understood with the actual practice rather than a drill at a desk. And we already know that most information truly take in is visual. So less talk about the whys and the wherefores and more focus on doing!

Thoughts on Thanksgiving

Notwithstanding the difficulties that families have living with autism, there are still many positive things we all learn from being around autism. Probably the one thing I find the most valuable is the Zen concept of living in the moment. The world around us may be falling apart, our budgets may be cut to the bone and discord among our politicians reigns, but that doesn't bother kids with autism. What do they care about all that and indeed, why would they? They are much more concerned with the present and what is right in front of them. They make us all practice "mindfulness", and teach us that we should focus our senses on what we are experiencing in the here and now rather than thinking ahead and anticipating trouble. I often wish that when I wake up in the middle of the night ruminating about all the things that keep me up I could have the presence of mind to simply breathe deeply and listen to the darkness. Occasionally, I remember to try to be in the moment and relax, but typically my mind is racing.

So, this morning in our staff meeting, it was particularly delightful to hear from our teachers about the things going on in their classrooms. One teacher told us of her excitement that some of her students are improving their abilities with AAC devices. On her last field trip, one of her students told her via his device to slow down and the other told her to get on the freeway! (She assures us she was going the speed limit!). Another teacher talked of the Thanksgiving luncheon that has become a tradition here. This teacher started the lunch a few years ago, inviting other classrooms to participate and families as well. Each year, more people join. So nice to give families the opportunity to join us and be with their children in a safe and fun environment. So, as I write, the students, staff and families are arriving to share the meal that many have prepared, including the students. These are all little things but how nice to hear about the simple things that make our days so wonderful. Next time I wake up at 3 am I will try to remember these simple things and embrace the day with the enthusiasm of our students. I have a lot to be thankful for,  not the least of which is the ability to be part of this great program and part of the lives of such wonderful people. Happy Thanksgiving to everyone!

Adolescence and Autism - Don't Stop Teaching!

People with autism may go through many different developmental stages in their lifetimes, probably the most dramatic being adolescence. Puberty is typically evident in our autistic kids a year or two before there are any physical signs, and then, most unfairly, lasts much longer than it seems to linger with typically developing students. Very few people recall those mostly middle and early high school years with nostalgia, so just imagine the chaos the hormones inflict on kids with autism. But there is some good news for those families in the throes of adolescence. If we can get their kids safely through the teen years without too much upheaval, they typically arrive on the other side of adolescence calmer and more relaxed.

Another phenomenon we’ve seen is that during puberty their learning seems to plateau or at least, not progress as it did in earlier years. That is when schools mistakenly want to limit educational offerings to only functional work to match their apparent halt in acquiring information. But I think it is important to recognize that this ‘hiatus’ from learning is likely only temporary. While we clearly need to emphasize the acquisition of functional skills and work on independence, we should keep in mind that as they exit puberty, people with autism will typically go through another uptick in their ability to learn new things. At least, that has been our observation, with all the students we have seen move from childhood to adulthood. Puberty grinds everything to a crawl while emotional and behavioral problems become paramount and then, they begin to get back to where they left off in their pre-teen progress.

So, it remains important to continue to present information to these students, even if it seems futile or useless, for we never know when that window of opportunity to take in information might open up again. To that end, I feel that it is important to continue to explore academics and present science and math and encourage opportunities to read. The students need to continue to be challenged and engaged in activities as they move into adulthood. We all need to keep our brains stimulated and open for learning, and people with autism are no different. Who knows what we may discover?  

Mysterious but Exceptional Abilities with Autism

How is it that some people with autism can have some truly extraordinary abilities and indicate exceptional intelligence in certain areas, and yet require so much assistance in daily activities? This is one of the conundrums of autism: the ability to excel in specific skills, but the practical application of these very same skills is another story. Our students who are verbal offer us some glimpses into their unique world and cognitive processes. But we also have a program full of children and young adults, many of whom have unique traits and remarkable talents who are non-verbal with significant communication difficulties. We can generally ascertain their language receptive skills by how they respond to us, but gauging what or how much they truly understand remains an enigma. This we have to guess through those fleeting moments when it is as though the fog lifts and there is clarity. Even with technology and AAC devices, the initiation of communication is typically the hold up.

We have long known that many of our non-verbal students can learn to read, not phonetically, but through their strong visual memory and perception skills. And the acquisition of math skills can be equally mysterious with some of our students. While we struggle to teach one-to-one correspondence or other math concepts, we shouldn’t overlook the fact that the student may well be beyond us in understanding concepts. But how to get that information out and make it useful is our difficulty to surmount. It doesn’t particularly seem to bother our students that we don’t know what exactly they really do know.

A recent article published in Nature by Dr. Laurent Mottron at the University of Montreal's Centre for Excellence in Pervasive Development Disorders notes that many autistics have qualities and abilities that are superior, but he doesn’t necessarily refer to them as ‘savants’ as so many others do. Dr. Mottron’s research team was searching to establish the superior abilities of autistics in multiple cognitive operations such as reasoning and perception. He analyzed a group of autistic people, one of whom, Michelle Dawson, was able to describe her thinking process, which was obviously very helpful to the research. Michelle Dawson's interpretation of autistic strengths is that they are indicative of authentic intelligence rather than a serendipitous trick of the brain that allows persons with autism to mindlessly perform intelligent tasks. Dr. Mottron suggests that among the many reasons people with autism have been assumed to have mental retardation is the administration of inappropriate tests and the misinterpretation of autistic strengths. While some people with autism evidently do have limited cognitive abilities, just how limited they really are is not at all clear.

So, if its not a fluke or trick, how do we capture that knowledge and help our students make it useful? Perhaps instead of focusing on things people with autism don’t seem to know, we should instead be helping to create more opportunities to demonstrate what they do know or are capable of. And this may be the advantage of newer technologies. We have computers, AAC devices, and iPads with some wonderful programs that can illustrate a conceptual level of understanding that no pencil and paper assessment can mimick. For the most part, our whole focus on programs and devices is to foster communication, which obviously is important. But we shouldn’t sacrifice the opportunity to explore their other abilities and knowledge, however obscure. Then, the next critical step would be to figure out how to access that learning in a way that would be functional and constructive. In my opinion, that’s where the next research should be heading.

Teaching without Words

Since we know that people with autism don't process auditory information well, why is it that we persist in presenting concepts by explaining with words? Even written information is difficult for persons on the spectrum who may be hyperlexic, but have limited comprehension or reasoning abilities. Let's face it, for some people words just complicate things. And for the rest of us, we spend half our lives trying to figure out what was meant by someone else's words. Miscommunications abound in all interactions. Start thinking about the upcoming holidays, and most of us anticipate complications with family communications. It is all about words, inflection, symbolism and intentions.

So, maybe we should concentrate more on how this applies to our teaching. With so much new technology available, this is the time to take advantage of computers, iPads, AAC devices and use more visuals rather than words. In our Morgan Autism Center Model, we remind staff in our trainings to use visual schedules, pictures, illustrate what you want the student to understand. A repetition of what you just said to your student does not mean comprehension. Visually presenting the concept is typically the best way to achieve understanding.

I recently heard about a study at the UCDavis MIND Institute about teaching math without words. This is particularly exciting for educators to be able to access software designed for this very purpose. I am sure there are many other innovations out there just waiting to be discovered, so we need to explore and see what works best. Check out this post: http://www.youtube.com/watch?v=7odhYT8yzUM.

The M.A.C. Conference

October 1 marked the 10^th anniversary of the Morgan Autism Center’s Annual Autism conference. And what a conference it was! The last 10 years have been a culmination of information on the latest medical and educational interventions, highlighting specific programs that have gained prominence to help educate people on their merits or shortfalls. To that end, the concentration has been primarily on early intervention and building social awareness. These are still topics well worth investigating, but while we are looking for ways to refine our interventions, the children are growing up. What to do then?

This year’s conference was full of excitement and energy, as our focus was on the transition years. After all the discreet trials, social skills training, and focus on eye contact of the early years, what skills are really important to help our students navigate the world? We had four very informative presentations; from Stephen Shore, talking about the Hidden Curriculum and its applications on participating in the community; Peter Gerhardt, presenting a very energetic view on how to get autistic people with serious behavior problems into the community successfully; James Ball, on the broader uses of ABA with adolescents and adults in expanding their behavioral repertoire; and Jamie Marshall, talking about how the very wonderful Boston Higashi School works with the transition age, through the development of specific routines and much physical activity.

These four were full of information on how to circumvent the difficulties of adolescence and the adult years. The common theme was to get those students out into the community as much as possible and help them experience to the best of their ability all the things we all like to do – use public transportation, go to restaurants, movies, shopping, etc. Practicing in a classroom just doesn’t cut it when the real world beckons us to do more.

To fill us in on the latest in medical interventions, we had Dr. Glen Elliott from Children’s Health Council. As usual, he presented clearly and specifically the choices of doctors in medicating people with autism, pointing out the pros and cons of each medication group and why some work better than others.

Then to explain Special Needs Trusts was Ellen Cookman from Gilfix and LaPoll, providing information so necessary for planning the future of people with disabilities.

And finally, Danielle Samson and Shannon Des Roches Rosa talked about the iPad and its application in the classroom and in the community. Theirs was a very app specific talk, which is exactly what parents and teachers want to know about. They also focused on the need to facilitate the use of apps with kids with autism, as the kids can very quickly thwart the underlying assumptions of the app and make it into just another stimming toy, thus loosing its learning potential.

All in all, a great day and we look forward to our next conference in 2012!

The 10th Annual Autism Conference is Coming- and Why You Should be There!

Morgan Autism Center's 10th Annual Autism Conference is next Saturday, October 1 at Santa Clara University. Why should this matter to you? This is the most eagerly anticipated annual conference about autism in the Bay Area. If autism touches your life in any way, here are several reasons:

1) Stephen Shore - Stephen is autistic, and is able to describe with great clarity his journey from being diagnosed at four years old through graduate school and obtaining his doctorate, as well as getting married. To hear descriptions of our chaotic world seen from the perspective of a person with autism reveals much to those of us who are not autistic, but know that the world is challenging enough to the most 'normal' among us.

2) Peter Gerhart - Peter has been working with people with autism for over 30 years and has focused on adolescents and young adults, a much overlooked population. Much of the focus in the autism world in recent years has been on early intervention, but as we all know, not everyone is mainstreamed after intense early intervention. So, what does happen and what should we do to prepare for all these children who will inevitably grow up? Come hear Peter's eloquent and reasonable suggestions and interventions.

3) Jim Ball - a behaviorist in the field and author of "Early Intervention & Autism: Real Life Questions and Real Life Answers". He is also on the board of the Autism Society, and focuses on behavior, social skills, technology and trauma.

4) Shannon Des Roches Rosa and Danielle Sampson - both experts in the world of iPads and their application to people with autism. Shannon and her son Leo (who has autism) have demonstrated the power of utilizing the iPad with facilitated direction. Danielle has conducted numerous very popular workshops since the iPad came out, focusing on her expertise as a Speech Pathologist.

5) Glen Elliot, M.D. - talks inlay terms about the latest research on medications for people with autism and the when and why they should or should not be used. Glen's expertise is always sought out and he is always very willing to answer questions.

6) Jamie Marshall - Jamie will be speaking about the wonderful Boston Higashi School and their "Daily Life Therapy". The school has a unique way to capitalize on our routine oriented students and through routines and patterns teach them to function as best they can in the classroom, social and community settings.

7) Ellen Cookman, Esq. from Gilfix and LaPoll - this is always an informative presentation on how best to marshall resources for the future of a child with disabilities.

So, reason enough to attend. It is promising to be a beautiful day in Santa Clara, and we will have exhibitors and lunchtime entertainment provided by the "DreamWeavers" - a group of talented young people with autism who will delight all who hear them. See you there!

Autism and iPads

A year and a half after the launching of the first iPad, excitement still exists for this amazing device. As more and more apps become available, it is difficult to keep up. Many people with disabilities are discovering its many uses to facilitate communication. For people with autism, iPads can be dramatic in their application. They are easy to intuit, simple to navigate, and have beautiful graphics. And so compelling that they can be either a very effective reinforcement - or a huge distraction. Precisely because they are so easily accessible, it is critical to create times to use the iPad as a teaching tool and other opportunities to allow the person with autism uninterrupted access to explore. And the difference needs to be clearly delineated.

Shannon Des Roches Rosa and Danielle Samson are among two iPad experts featured at the Morgan Autism Center conference coming up on October 1 at Santa Clara University, Santa Clara, California. Both offer specifics on utilizing the iPad in practical ways to facilitate play and learning. Because it is such a new tool being used in ways it wasn't originally designed to be, it is worthwhile to get some advice from the experts. Shannon is also the co-author of "The Thinking Person's Guide to Autism" and has an ongoing blog with notes about iPads at http://www.squidalicious.com/p/on-ipads.html. Danielle is a long time speech therapist who has been very active in the Augmentative Alternative Communication world. Both are worth checking out.

Our favorite four legged friend is gone!

Last Friday was our last day with Kona, the wonderful golden retriever who has been a daily participant at the Morgan Autism Center for 15 years. To the very end, Kona faithfully provided our students with a sweet disposition and calming presence. Kona had a unique communication between herself and the students that can only be described as magical. Our nonverbal students were able to interact with her in ways they often were unable to do with others and Kona somehow always understood their intentions. Through Kona we were able to elicit more language from many of our students as well as to teach social skills. Occasionally, Kona's presence would be called upon to enable a student to maintain an emotional equilibrium if having a tough day. Kona would always come through for us.

Kona's owner was our Director of Student Services, Judi Campbell, who generously allowed Kona to be part of our program. Many of the students and clients came down to the office daily to see Kona, and often Kona would join them for walks. Judi spent a great deal of time, especially in the early years, facilitating Kona's relationships with the students. Kona seemed to understand the limitations of the students from the very beginning and was always accommodating in ways that could teach us all to learn how to better interact with one another. Kona taught students who were initially frightened of all dogs how to be in the same proximity safely, no easy feat! While she was playful and lively at times, (for, after all, she was a dog!) she never pushed her boundaries when the students were around. Kona was a great motivator for many of our students: to encourage them to exercise a bit more, to get to spend time with Kona after doing special jobs, or to have the opportunity to play catch with Kona and her toy. Kona loved to play with her favorite toy, which she would toss into the air, and dance around the courtyard proudly carrying it with her head held high to balance it across her nose.

Dogs are delightful companions, but Kona was even more. She was a devoted friend to our students, staff, parents, and visitors. Of course, Judi was the center of her universe and we are very grateful to Judi for having shared in the delight that was Kona. We will all miss her but what a gift to have known such a wonderful animal.

Back to school!

Our staff have been here these last few days and weeks busily cleaning, making materials, schedules, calling families all in preparation for the return of our students tomorrow morning. Its back to school! With some moves among our staff to work with different children in new classrooms, there is an infusion of excitement and energy. And though we've only been gone for 3 weeks, for some of the parents, its been a LONG time - much longer than the calendar indicates! A few have stopped by in the last couple of days and mentioned their not-so-silent anxious anticipation for the school year to get started.

I think most schools and their teachers look at the beginning of the school year the way the rest of the world looks at New Year's. We set goals, make resolutions, expect improvement and plan, plan, plan! We are determined to work harder to get it right and aim for what's best. We look forward to the coming year with new ideas, better ways to achieve our goals, and excitement of re-connecting with our students and meeting the new ones.

The rooms have been scrubbed, things tossed or re-arranged and organized, staff have been briefed, files read, parents called, buses lined up - and I think we're ready!

Autism and the Law

While recently on vacation, I had two people save me articles written about people with High Functioning Autism or Asperger's syndrome. Both involved serious problems with the law. But the conflict in both situations was very similar - were the accommodations required for these people to function pushing the boundaries of what is acceptable and therefore above the law? They raise the question of how our society should respond to the growing number of adults with autism and whether enough is being done to accommodate their behaviors - or is too much being accommodated and therefore excusing what would typically be unacceptable ?

Here are the situations:

Simon is 25 years old, graduated from high school, an obsessive sports fan, who becomes very upset when his favorite teams lose, or when he misperceives a social situation with his neighbors and feels slighted. So, he screams and rants outdoors, sometimes in the middle of the night, from 10 minutes up to an hour. After many years, his family's neighbors, while trying to be understanding and sympathetic, have had enough. They have had to call the police to stop Simon from screaming and yelling and he often directs his rants to specific neighbors, not always the same ones. After responding to between 50 - 100 calls, the police and the neighbors finally felt something had to be done. The police began assessing "nuisance" fees to the family to prod them into a more permanent intervention. This nuisance ordinance had not been set up for such a situation, but it turned out to be a "tool of last resort to remedy a difficult, sometimes agonizing standoff between the family and their neighbors, " according to Peter Krouse, who reported on this in the Plain Dealer ( Sunday, August 14, 2011). The family was charged more than $6,500 because of their son's outbursts, which they fought in a bitter battle in an appeals court.

Of course, the family feels wronged and dismayed over the perceived lack of understanding on the part of the neighbors. However, the neighbors were people who had known this boy since he was young, and all expressed compassion and sympathy for the family. But enough was enough.

The solution the family settled on was to send their son away to Utah to live with other people with disabilities. The neighbors felt that without a punitive consequence (the assessment fee) for their son's actions, the family would bring their son back home and he would continue with his pattern of disruption.

From what I could glean from the article, Simon's night time rants could be very direct towards specific neighbors, screaming about why they wouldn't let him come into their house to take pictures or why they wouldn't invite him to visit. The targeted neighbors felt unnerved by his yelling and knew they couldn't reason with Simon. The parents felt they had tried everything, from taking away favorite activities to confiscating his cell phone. But as anyone who knows autism knows, logical consequences are lost on a person with autism. In fact, they likely will only increase the agitation and compulsiveness of the autistic person, thus aggravating the situation even further. So, the police would be called and that would put an end to his rant.

My take is that the call to the police became part of this young man's routine and that was what would finally bring closure to his rantings. The inability to understand logical consequences has to be the most frustrating thing about dealing with a person with autism. If you don't understand the why and the wherefore of a situation, and you have a very compelling need to follow a routine regardless of the consequences, you are destined to repeat the same mistakes over and over again. The only successful intervention is to provide the person with an alternative response that achieves something close to the goal they are trying to reach. And the alternative will need to be practiced over and over. When that fails, it is usually most effective to remove the person to a completely different situation and carefully monitor them so the old behavior won't begin again, thus enabling them to develop a new and positive and adaptive behavior pattern. By moving their son to Utah, I would hope the parents were able to achieve this. But should they bring him back to his family home, they would have to either expect that he would revert to his old behaviors, or if given very careful and thorough supports maybe he could overcome his compulsion to scream at the neighbors. Clearly, there are no easy solutions.

The second situation is more complex. In this case, the man with autism is much more sophisticated. As reported by David Kushner in IEEE Spectrum (a magazine for technical insiders, not about people on the spectrum) the U.S. Government wants to prosecute Gary McKinnon for hacking into classified government information. Gary is obsessed with UFOs and was convinced the government was hiding alien antigravity devices and other technologies. He wanted to release the information to help all humanity. In Britain, where Gary is from, the case has transformed him into a cause celebre. Why? Because Gary has Asperger's Syndrome. As Rhea Paul of the Yale School of Medicine Child Study Center states in the article, "There have been an inordinate number of young men with Asperger's who have gotten in trouble with the law. Its difficult for them to intuit moral decisions that may come more easily to others." And that is where the difficulty lies. What is the role of Asperger's in his crime? And is it a crime if he has Asperger's?

Many of Gary's supporters in Britain have rallied outside of Parliament with picket signs, created "Free Gary" T-shirts, websites, and all the usual fanfare for issues deemed to need publicity. Even the former Prime Minister, Gordon Brown has weighed in saying Gary deserves sympathy.

Sympathy maybe, but does that excuse what potentially could have been a dangerous consequence? Does Asperger's become the new insanity defense? And what about someone with bipolar disorder or schizophrenia? Many people with Asperger's have the cognitive abilities to plan and carry out criminal behavior, of that there is no doubt. But because of their limited social abilities and understanding the gravity of the consequences, should they get a pass or a more lenient sentence? Provocative thoughts and certainly requiring greater awareness of the potential for trouble. I expect we will hear much more about this issue in the future.

The Geek Syndrome and Autism Talk TV

Recently, I discovered a great series called "Autism Talk TV" on the website "Wrong Planet", a name that I love! One of the producers, who calls himself an "Aspergian" is the son of John Elder Robinson, the author of the book "Look Me in the Eye", about his struggle with Asperger's while growing up. Just recently, he has a new book called "be different" (starting with lower case letters in the title!). John's son, Jack Robinson, and his co-producer Alex, along with others do a series of interviews with people in the field of autism. The episode of "Autism Talk TV" that really intrigued me was an interview with Steve Silberman, the author of "The Geek Syndrome" published 10 years ago for Wired Magazine. http://www.wrongplanet.net/postt133968.html.

It was that article that inspired the theme of our first autism conference, also 10 years ago. It has sparked many lively conversations and even arguments about the genesis of autism. When teaching the autism seminar for Santa Clara University and even a recent seminar at Stanford University, I always referenced that article for its clarity in describing what has become a widespread, though unproven theory. But regardless of the theory, it still has relevance years later, intriguing and thought-provoking.

Steve Silberman was our keynote speaker at our first conference. Amazingly enough, our autism conference was one of the first in the bay area, and certainly the first to focus on the increase in incidence in both Silicon Valley and California. Steve spoke eloquently about his journey into the world of autism, which was accidental. (He describes why he became fascinated with autism in the aforementioned interview). Also speaking at that conference were Jon Shestack, one of the co-founders of what was then Cure Autism Now (now Autism Speaks), Rick Rollens, parent advocate, and Dr. Robert Hendren of the newly founded UC Davis MIND Institute.

As we are planning for our 10th Annual Autism Conference, again at Santa Clara University, the incidence of autism continues to increase and though there is much research going on, not much has happened to clarify what the causes may be, let alone a clear definition of what the constellation of symptoms, which are so different among people with autism, actually may mean. The wheels of research turn excruciatingly slowly!

In the meantime, quirky people are here to stay and walk among us, so we all have to figure out how to live together in ways that benefit everyone.

Genes and the environment

Two new studies whose findings have just been released have shed more culpability on environmental factors especially during pregnancy, and combined with the assumption of a genetic predisposition. As noted this morning in the New York Times, the environment, including the prenatal development period may be as important as the genes in causing autism. This seems quite logical, for certainly our genes cannot be changing as quickly as the rate of autism is increasing. (http://www.nytimes.com/2011/07/05/health/research/05autism.html?_r=1&emc=eta1)

In the study of twins, both fraternal and identical, it has been found that the rate of autism occurring in siblings is much lower than the rate found in twins. The suggestion is that it is the conditions the twins shared in the womb, rather than what happened after birth that contributed to their autism.

In the second study, mothers who had taken certain anti-depressants had an increased risk of their child developing autism. This follows a recent study from Epidemiologist Rebecca Schmidt of the UC Davis MIND Institute released in May on the use of prenatal vitamins. In this case, mothers who took prenatal vitamins or the vitamins during the first month of pregnancy were only half as likely to have a child with autism as those who didn't. If the mother waited until the second month of pregnancy, there was no effect.

Is this going to make parents feel like they are being blamed once again? Parents don't need suggestions of their possible complicity in causing the autism of their child, so the more clear information that can be ascertained, the better.

To the Dads

When referring to parents of children with autism, we typically are referring to the moms and how it is they manage to orchestrate family life, amidst the unpredictability of autism. But this is a salute to the dads, who are equally bewildered and stunned on first receiving their child's diagnosis. Like the moms, they have to figure out how to navigate this new world they didn't expect to be in. Their challenges in dealing with this information are different than the mothers, by the very nature of the differences between men and women. Some are paralyzed and don't know which way to move, and others immediately seek solutions and google interventions and research. As their children develop, it is remarkable to see how these fathers come to terms with their child's disability.

It has been my observation over the years to see a change in fathers. Thirty years ago, the child rearing was still very much the purview of the mother; managing the school schedule, the dietary requirements, doctors' visits, etc. And, what seemed to me, a reluctance or perhaps a lack of understanding on the part of the dads to accept the disability for its apparent limitations. But that appears very differently now in the dads I meet. While it certainly can't be an easy life, there is much more humor and acceptance of the personalities and peculiarities of the children. I don't know if its just my imagination, but it seems that dads have in some way been granted permission to enjoy their children more and the situations they find themselves in. I suppose that's the only good thing to come from the increase in the incidence of autism - more people are aware of it, recognize it, and are slightly less likely to be quite so judgemental - that is still ever present.

So, here's to the dads - to Jim, who enjoys joking with son Jeffrey and have worked out some funny little routines; to Sean, who laughingly came to school to collect the computer son Jack took to school while he got Jack's backpack; to the group of moms and dads who took their kids to family camp this weekend; to David, a single dad who revels in the accomplishments of his son Jonathan in the music group, the "Magic Makers"; to Joe, another single dad whose daughter Krysten is moving on to a new adult program; to Jim, father to Matthew and Jonny, whose adoration for his kids is palpable; to Christopher, who takes his Jonny everywhere and delights in his compatability. Okay, the list is too long. To all the dads, who may be baffled and harried, but who fight and advocate for the best their child can have. They may not show it obviously, but it is clear these children love their dads and I'm sure they know well their dads love them.

The Death of a Loved One

Joey's dad died a few weeks ago. He was 92. Joey's mom had died several years ago, leaving Joe Sr. to look after Joey. The youngest of five children, Joey had lived with his parents all his life. His older brother moved in with Joey and his increasingly frail dad to help out over a year ago. The family had never intended Joey to be placed in a group home, despite the fact that Joey is not always the easiest person to care for. Even though Joey was (and still is) constantly taking and stuffing things into his pockets - papers, old napkins, tennis balls etc.; compulsive about many activities and determined to do things his own way; and even occasionally would lock his parents in their bedroom, his parents nonetheless delighted in him.

Joey has a nice singing voice and loves to harmonize. He enjoys all kinds of music, from opera to rock and roll, and sings the melodies lustily, without knowing any specific words. A while ago our talented IT staff and one man orchestra, Jim, brought his guitar and Joey down to my office. Jim wanted me to hear Joey sing the Elvis song "Are You Lonesome Tonight?" Knowing this would be a treat, I recorded it on my iphone, downloaded it on my computer, and occasionally will listen to it just for the joy and simplicity of Joey's singing. He has the rhythm perfectly down, the melody exact, the inflection and approximation of words, and the pathos spot on. Where Elvis would embellish the music by speaking, Joey again approximates the sounds, pausing precisely as Elvis would. One would assume Joey wouldn't know of what he is singing. But how can he get it so right? Joey certainly understands something of the song's context and is very able to translate that to the listener.

Joey's parents were very proud of his musical talents. They loved to hear Joey sing and made sure he had access to many different styles of music. They laughed and cherished his many peculiar and compulsive behaviors, though many surely must have compromised their lives. Joey must wonder, where are they now, these two people who loved him so deeply? While he seems to be adjusting well - his brother makes sure his lunches are the same, his longtime caretaker, Hector is still involved, and home life is the usual routine, we want to watch carefully to help Joey for those inevitable times he will realize something is missing in his life. Everyone experiences grief differently, and people with autism are no exception. It may manifest itself in some unusual way, but I believe it is in their hearts somewhere. Maybe Joey will connect with his parents through his songs. I'd like to think that when he sings, they would be listening.

Autism Study cites higher autism estimates: 1 in 38

The recent study published May 7, 2011 in the American Journal of Psychiatry indicated that the estimates of autism incidence are much higher than previously thought. This study out of South Korea reveals that the prevalence of children known to have autism or are at risk of developing it is 1 in 38 children. As the study noted, many of these children had not been counted in previous prevalence studies, and may have been mainstreamed, undiagnosed and untreated. Whether it is an over estimation of the numbers or not, it should definitely make us all stop and think of the ramifications of this significant health crisis. Children with autism require early intervention from trained personnel. When they are provided the support needed, these children are able to communicate their needs and desires, are less frustrated, less likely to develop maladaptive behaviors, and thus increase their chances to be included in the mainstream of the education system and to become productive citizens. However, there will always be some people with autism who are going to need more involved services, and some that will need supervision and support the rest of their lives.

This burgeoning number of people with autism growing into adulthood is already overwhelming school districts and the local Regional Centers who offer a variety of services. On top of that, most of these people are Medical recipients. These numbers continue to grow at the very same time baby boomers are beginning to retire and will also require more health care funding. The impact on Medical and Medicare is becoming more dramatic.

In 2004, the San Jose Unified School District (SJUSD) formed a public-private collaboration with Morgan Autism Center to provide special education services for the SJUSD children with autism. This program has grown from one preschool class in 2004 to six classes in 2011, totally 60 children. Had SJUSD not done this program, most of the children in the program would have been either referred to a County program or a more expensive non-public school, costing the district hundreds of thousands of dollars per student. In addition, the school district was able to save considerably more by not have to fight parents in mediation cases, as most parents are very satisfied with their child’s progress within this collaborative effort. Morgan Autism Center also works with Santa Cruz County Office of Education and on a smaller scale, many other school districts.

Morgan Autism Center works with the district teachers, aides, Speech therapists, Occupational therapists and Behaviorists to help them understand the autism learning style. Training is important to any successful classroom but for children with autism it is especially critical. Like any of us, when these children feel they are being understood, and their needs are being met, they can be ‘available’ for learning.

More collaborations like this are needed. Private organizations like Morgan Autism Center with over 40 years of experience with people with autism can provide the expertise necessary to help school districts, agencies, transition programs or adult programs. Our purpose it to help these other entities build capacity within their own organizations, because we know this problem is not going away - it will only continue to grow.