New Hypothesis for Cause of Autism

In March I had the pleasure of attending a symposium at UC Davis MIND Institute about gene-environment interactions in autism causation.  A Morgan Autism Center parent, Jill Escher, opened the conference with a short talk about a surprising discovery that may have considerable implications for autism research.  You can see the video here: autismepigenetics.org.  Just scroll down the home page and you will see the videos listed with Jill's at top.  Note that the videos, which link to the UC Davis website, may take a little while to load.

In brief, Jill was intrigued by a casual comment a family friend made to her when she was quite young. The friend referred to Jill as a ‘miracle’ baby. She got to wondering what was so miraculous and that led to Jill obtaining her own prenatal records.  That alone is a miracle. How many of us could access our mother's prenatal records? She discovered she had been heavily prenatally exposed to synthetic hormone drugs that were not uncommonly given to pregnant women in the 1960s. Because her mother was given medications, she was part of a study about which Jill also obtained information. Not one to wait around, Jill contacted scientists from around the world with questions. After speaking with many experts, she developed a hypothesis now known as the "germline disruption hypothesis of autism," that ties these novel mutations in autistic (and other) children to various acute exposures (including drugs, maternal smoking, endocrine disruptors) that disrupted the proper epigenetic (chemical tags that control gene expression) programming of a parent's gametes, sperm or egg.

Jill pretty much single handedly pulled together this remarkable assembly of scientists at the UC David MIND Institute for this symposium. The other videos from this symposium featuring top experts in this field are also fascinating, though many are highly technical and involve intricacies of molecular biology.  The whole event was exceptional. Of course, it has led to more interest in the field. Jill was recently invited to speak at a National Institute of Health with Autism Speaks in DC and just today, an article was  published in Environmental News. http://www.environmentalhealthnews.org/ehs/news/2013/autism-epigenetics. 

Jill has also been invited to do a TED talk. Things are definitely happening because of this one mom's tenacity. Congrats to Jill and let's hope this discovery helps move autism research in promising new directions.

Air Pollution and Other Environmental Concerns for Autism

Yesterday, the journal Environmental Health Perspectives  looked at associations between levels of pollutants pregnant women are exposed to considering the time and place of exposure. They suggest that women who were exposed to the highest levels  of diesel or mercury were twice as likely to have a child with autism compared to those who lived in the cleanest areas. Other types of air pollution, such as lead, manganese and other hard metals, were also linked to a greater risk of autism, though not as high as diesel or mercury. All are known neurotoxins. Much more work needs to be done to determine which pollutants are most damaging and then help people make choices about their living situations. Not surprisingly, people most affected are going to be in lower income brackets, living close to freeways. And we also know that  farm workers and those living downstream or downwind of farming areas have an increased risk as well.

With the huge increase in autism numbers, there is a tendency to dismiss the tsunami of people coming our way and write it off to better diagnosis. But at some point, we have to look at the environment and how toxins have dramatically increased over the last 30 - 40 years. It is my contention that along with a genetic susceptibility, the environment exposure is huge.

The availability of pharmaceuticals has become very commonplace. I don't think people realize that each person's consumption of drugs affects us all, as everything we consume ends up in the water system. Also, the ubiquity of birth control pills, hormone therapies, in-vitro fertilizations, steroids make all seem benign. But what are the consequences of all these pollutants, contaminants, pharmaceuticals or whatever we call them? It reminds me of a TV commercial in the 70s with the tag line being, "It's not nice to fool with Mother Nature!" And that is so true. We may all be reaping the results of our increased technology and maybe the results aren't so wonderful after all.

Today is World Autism Day. We want to make sure to celebrate all the individuals with autism and be aware of their dreams, aspirations and of course, their needs. Every person with autism has a family that has also been effected. It is critical to recognize that families as well need to feel acceptance and a sense of belonging. Being able to participate in family/community activities is so important to all those dealing with autism. Isolation is very common, so we all need to open our arms and minds to welcome these people into our lives.

So often, I think of the many pioneers in the world of autism. Parents who years ago were told that they were responsible for their child's disability. The condemnation, fear, and rejection they were forced to endure makes one wonder how did they manage to forge ahead and get as far as they have? I so admire some of our older parents whose lives were tremendously effected by the erroneous claims of Bruno Bettleheim and his "Refrigerator Mothers." Leo Kanner's original description outlined so many things that were later disregarded in favor of Bettelheim's theory, and in the process, we lost 50 years of potential progress. I salute those parents who knew in their hearts that they were not the cause of their child's disability and plowed ahead to make the world as good as it could be for their children. We've come a long way, but still have a long way to go!

Moving to Less Restrictive

Moving from a highly structured program such as ours is to a less restrictive setting can be nerve wracking for all involved. But what a happy day it is when a student is able to successfully transition back to their local school district. We recently had such a great experience with one of our school students who has returned to her home school. Although her father approached the day with trepidation, he also was thrilled to see that his daughter had come such a long way since her initial arrival with our program. Those were some very trying times when she had hours long tantrums,  stripped when she couldn't get what she wanted, and had a scream that was very effective in deafening everyone near. This last year, she truly blossomed both academically and socially. And so it became apparent that it was time for her to move on to a less restrictive setting. Working carefully together with our staff and her new teacher was paramount to a successful transition. We know from long years of experience that our students' behavior management must be done with an in depth understanding of autism or things can backslide in a hurry. With meticulous planning, her teacher here and the receiving teacher worked to make  everything as smooth as possible for both the student and parent. As everything was in place, the student moved to her new program and so far, it has been very successful and she is participating with her new peers and following directions well. We couldn't be happier, and are sure we will continue to be in touch with her family. It is certainly a moment to celebrate!

Convoluted Connections

Ever wonder how any of us can take a little piece of information and extrapolate that  to create our own unique answers to the mysteries of life? Imagine that process in the mind of a person with autism. Here is a case in point: years ago, Jeff, like so many people with autism was fascinated by maps. So, one day he and I were looking at a map of the world. Jeff asked me why England was sometimes called Britain.  I briefly explained that the Romans had conquered much of Europe, and that at one time there was a saying "all roads lead to Rome." And that was the end of our geography discussion. Jeff's interest in maps continued and apparently so did his thinking of how countries could be connected. Several years later, Jeff would randomly announce his conclusions, which were many and quite convoluted. Since I spoke with him daily, I began to see the thread of his thinking though it has taken many twists and turns over the years.

Here is an example of one of Jeff's unusual conclusions and how he seems to have arrived there: we once had a staff person from Australia, which Jeff knew was part of the British Commonwealth. He also was aware that Tasmania was close by, and so from that bit of knowledge he decided that people from the British Isles were 'Tasmanian Brits' as he would say. From that, he went on to talk about how a true Tasmanian is a combination of Mexican and British, this based on another tidbit of knowledge about the Spanish Armada running aground in England. If you remember your history, you'll know that some of the Spanish sailors sought refuge on the shores of England. Hence the Latin connection in Jeff's mind. Its all a stretch and very convoluted, but it is not impossible to see how he comes to his conclusions. However, if you were meeting Jeff for the very first time, you would be baffled by his  garrulous conversation about nationalities and his very definite statements about what is what. You could certainly not be criticized for thinking his conversation made no sense. But there is a logic to his thinking, but it does take a bit of explaining!

The Importance of the Social Impact in Autism

A recently published research paper in the Journal of Child Psychology and Psychiatry conducted by a group of investigators from the University of Connecticut found a small group of children , originally diagnosed with autism had managed to learn to function as well as their typically developing peers, without any symptoms of autism.

This is a very unusual scenario as people with autism seldom lose their symptoms, though many show progress and improvements, particularly with intensive interventions. Outcomes for these children can vary significantly, but not typically to this level. And of course, we always wonder was the child misdiagnosed in the first place? The study addresses these concerns, but interestingly notes that those children who were initially diagnosed with autism, but who were noted to have a mild social deficit, were among those who were in the optimal outcome group. To me, that explains a lot. Of the three main deficits characteristic of autism, (communication, repetitive behaviors/interests, social) it is the social deficit that so defines the disorder. If a child can learn the "mechanics of interaction, the skills we use in daily social situations in all areas of our lives" as Temple Grandin says, this will have a huge positive impact on the child's life.

Although we don't know the exact interventions the most successful children in the study were offered, I would expect that there was a significant emphasis on social skills and making social connections. Once the broad frameworks of social awareness develops, real relationships can be forged that are meaningful and continue to build on themselves. This is so critical to a child's success in the world.

It is encouraging to see some of the very strict ABA programs beginning to recognize the importance of the social/cognition connections. It has certainly been what has been missing in the past with these methods and techniques. It seems that maybe now interventions are seeing the significance of a more naturalistic approach to facilitate a better awareness of social situations and social thinking.

Autism and Violence

Though we are all reeling from the unspeakable tragedy of the Sandy Hook Elementary School, I think it is imperative to note that there is no likely link between Autism, Asperger's and the violence that occurred last Friday. The sadness of the day is overwhelming and will be for a very long while.  However, in my opinion, the focus should not be on autism, but on providing the necessary supports for people with mental illness. Services and meaningful help in this area are sadly lacking. And even then, it is important to realize that the majority of people with mental illness are not going to do what Adam Lanza did. No one has definitively said that Adam had Asperger's and if he did, I believe he also had some other comorbid but undiagnosed disorder. That said, it is clear that some people with autism may display aggressive behaviors occasionally. But it is completely different from the kind of violence exhibited in Connecticut. There is no evidence that connects this planned and intentional violence with autism. Naturally, when you have significant trouble communicating, as people with autism do, and then get frustrated, one might resort to an angry response or outburst to a situation. This might involve hitting, throwing something, pushing someone and most likely, the episode would be over relatively quickly. Of course, there are times when a person with autism may unintentionally hurt another in an angry response, but it is not with forethought or malice. The anger or aggression displayed is usually just to stop the other person from causing them frustration and/or anxiety.These responses typically are reactive and impulsive to a specific trigger and given space and some time to calm down, everything will be back to normal. It would be highly unusual for a person with Autism or Asperger's to have the considerable forethought to plan, organize and then follow through with an event such as we saw last week. It would be a grave injustice to persons with autism and/or Asperger's to connect that with the horror of the shooting of 26 people.

Our hearts are so saddened by the death of so many innocent children and adults. And we hope that someday soon, our society will have realized that we cannot allow people with clear distress signs continue to slip through the cracks.

Holiday Get-togethers

A few days ago, I was lucky enough to be able to host a luncheon at my home for three of our longtime clients, Wanda, Chuck and Jeff, and five of their former teachers, who have known these clients since they were children. True to their nature and interests, Jeff had the menu planned practically the day after we had our annual luncheon with the same group last year. Wanda's focus was on finishing holiday cards on the drive down and to get her four 'posed' pictures in. Chuck talked all the ride to my home about his excitement at seeing the Caltrains tracks and of one teacher in particular. And once he saw her, he quickly engaged in asking his questions about who worked in what year and where did they move, and why didn't they tell him before they moved on.

For such wonderful friendships that have lasted over so many years, I certainly feel fortunate. As we ate our food, the conversation was certainly all over the map, but lots of laughs over very fond memories and the many non-sequiters that tend to pop up when so many people with different life stories get together. Our shared histories will always keep us on common grounds.

As we parted ways, we all made plans to do this again next year, though none of us can know what the next year will bring. But our time together adds one more lovely memory to our life experiences. I do feel very lucky.

Nurturing Talents

This weekend, I attended the Friends of Children with Special Needs (FCSN) Gala. The highlights of their program were the children and clients with special needs dancing, singing and performing dramatic skits. This was in front of an audience of 1,000 people with noise, lights, music and lots of action. There was no shortage of distractions and opportunities for someone to be overwhelmed by the many activities going on.

The acts FCSN presented were received enthusiastically by a very appreciative audience, many of whom know first hand just how much work it takes to get those kids ready for prime time. But they were ready and did a very inspiring job. Some are just happy performers, but some are extremely gifted. For a person with significant disabilities to have the opportunity to showcase their particular talents for others is a rare, but wonderful experience. It is an accomplishment we should not overlook. And we should do everything in our power to offer many more chances. Its good for all of us to nurture our talents and celebrate our capacities to share these with others. And it leaves us feeling the world has just been made a slightly better place!

Heart-Alliance Autism Network Sino-US Exchange

Yesterday, we hosted a tour and luncheon for 15 visitors from Beijing. Most were parents, but also a few professionals were among the group. They were all participants in the Heart Alliance Autism Network Sino-US Exchange Program. This group is fairly recent for China and much needed for families and people who have been feeling very isolated and hopeless with their children with special needs. When I visited the Stars and Rain School in Beijing in 2006, I was struck by the determination and resilience of these families, given the lack of government support.
They are true pioneers in the field of special education in advocating for their children. Even with this alliance, however, it is plainly evident there still is a very long way to go for services to be provided via governmental support.

The group from the Alliance toured our classrooms and carefully noted the materials and instructional work of the staff, asking many questions and looking to implement techniques and ideas in their own work. At lunch, they were full of questions about the IDEA, IEPs, IPPs and all things related to the services our students and adult clients receive. But mostly they wanted to know how best to help other families not feel the overwhelming sense that there is no one else with the same problem. Though we have come a long way here in California, I don't think we're anywhere near where we would like to be. Many parents here still feel isolated and desperate for better services. China seems like it is where we in the US were before the IDEA and the Lanterman Act were passed, both amazing civil rights laws. Yes, things are better here, but far from perfect!

Adding a little variety

This morning, one of our adult clients, Christy, stopped in to hand me a note she had written. In large bold letters, she wrote, "NEXT YEAR! IN OCTOBER MARK ON YOUR CALENDAR! LET'S TAKE ANY ONE STUDENT AND INVITE ME FOR LASAGNA PICNIC AT YOUR HOUSE OR A LUNCH OUTING AT....." and then she lists her favorite local restaurants, of which there are many. The adults in our Adult Program always take the first Monday of each month to go out to lunch. Every year, Christy has an idea for me in October that she has usually planned since the previous October. This year was no exception and so Christy and I and another client went to Christy's lunch choice that first Monday in October. Christy knew exactly where she wanted to go, what she was going to order, and what she wanted to drink. We had a nice time and no sooner were we done, Christy started planning where to go and what to do next year. This is a very determined young lady!

At the same time, Jeff and Wanda are asking me about the date for our annual holiday luncheon which we've done every year at my home for the last 5 years. Its become a tradition for them. Like Christy, Jeff has had the menu planned since last December right after our last luncheon.

These events seem like such a small, easy thing for me to do, not a big deal and easy to dismiss as not important. But not to Christy, Wanda or Jeff. For them its a very big deal because they are reliant on others for much of their social lives. And their world is very small. It makes one realize that the little things we might take for granted - a trip to the store, a swim at the Y, a coffee run to Starbucks, - even a BBQ lunch here at our program are all special events to look forward to. As they say, variety is the spice of life!

Social Stories with Non-verbal Students with Autism

Social Stories, developed so cleverly by Carol Gray, are useful not only for students who are verbal, but also can be helpful for non-verbal students. Obviously, they need to be adapted, perhaps as pictures but also could be with written words if the student is able to read. We should never underestimate the ability of people with autism to understand regardless of ability to speak and/or read.

As we focus on our expectations in a social situation when trying to teach the student, we must recognize the goal is to increase the social awareness of the individual. First the student must know exactly what is happening. If the student has accurate and specific social information, we can then help them process that information and hopefully influence a change in their behavior. We would do this through a visual presentation of the situation and what we expect. Of course, we very likely will have to be explicit and not make assumptions about what the student has observed (and we know that social observations by our students are VERY limited). But probably most important is that we don't make the assumption that because the student is not verbal or minimally verbal, we can't use a modified form of Social Stories.

Information is important to all of us - the who, what, why and how of our social interactions is critical to move successfully throughout our days. It works best to take the time to explain what is going on and what our expectations are of the student's behavior.

We are very fortunate to have Carol Gray as our keynote speaker at our annual conference on Saturday, September 22. She is an excellent and engaging speaker and I know will provide much needed information for teachers, speech therapists and parents. Check out our website www.morgancenter.org for more information.

Taking the IDEA for granted

We take some of our information about autism and expectations for programming for granted. But in reality, we have come a very long way in the last 35 or so years. When I first started teaching, the idea of an IEP was brand new. The IDEA had yet to be written. Before the IDEA in 1975, there was no financial support for students and the burden for education was on the family. And even once the IDEA was established, parents still struggled to get school districts to understand the unique quirks of their children. Frequently they had to fight with their school districts just to get that to which their child is lawfully entitled. And sometimes, they still have to fight.

Over the years, we have had requests for time to be spent learning about our program from many quarters -  school districts, parents, educators. We are always glad to share information with others. But there are some places where our information can have a tremendous impact. We have had contingents of people from China, Uganda, Ireland, Japan, Korea who are struggling to develop effective programming for their students with autism. And most are doing it without much support from their governments, with the parents often being the driving force in their child's program development - much like parents in the United States prior to the IDEA.

We are very pleased this next year to be welcoming two interns from Viet Nam: one a school director had visited us once before and this time, will be with us for two months. The other is a teacher and will be with us for 5 months. They just got their visas approved and are elated to be coming. And also they are very excited to be able to come to the Morgan Autism Center Annual Conference on September 22, 2012, and attend some of our lecture series.

No one should have to re-invent the wheel in these days of the internet and Youtube. But there still is nothing like the real time training of being in the classroom and working directly with the students. So, we welcome our newest interns and are thrilled to be able to spread the word on how to create a successful program.

Back from vacation...

How lucky are we to be able to say that our job working with some very unique people is of course challenging, but also very fun? We got back from our two week break, and the students and clients are happy, staff are cheerful, and everyone is busy, busy! Summertime is particularly fun with opportunities to go to the movies, swimming, water play, and today a terrific field day. This first week back was both enjoyable and a test with most students and clients excited to be back, and the challenges of a few new students, who are slowly catching on to their new routine. And how is it that some of these adolescents can grow so much in just two weeks???

For the field day, there was our wonderful siblings group who had prepared and manned a game with little stuffed animals as a prize; the Animal Assisted Happiness group with the very tame (and real) goats, chickens, bunnies and guinea pigs; and each classroom planned an activity so the students could rotate throughout the field day. There was face painting, the 'shaving' station, ring toss, water balloons - and often it was hard to know who was having more fun, staff or students. Then we had an opportunity to christen our new BBQ grill, made specially in memory of Elizabeth and George. The grill worked great, and Lester, Elizabeth's husband and George's dad, came to assist our own BBQ master, Doug, with the grilling of the hot dogs. Everyone had a very good time - it was just that kind of a day!

Creating Apps for Work for People With Autism

For those students with autism who have the technical abilities, but not the social skills to negotiate a work setting, there is a a very interesting model at a non-profit center in Dallas, housed at the Southern Methodist University. Called the NonPareil Institute, about 80 adults with autism are learning how to design and program apps for iPads, iPhones and Androids: http://www.computerworld.com/s/article/9225562/Institute_s_mobile_apps_are_built_by_hands.

This program was started by three fathers of children with autism who were concerned about how their children might be able to be employed considering their challenges. Now these adults have already developed one app for the market and have two more in the pipeline. The parents are currently hoping to build a campus for the program. It is so gratifying to acknowledge that while different, people with autism have skills that can help them be contributing members of society and not just consumers. It is a entirely new way to view autism. Finally, we seem to be getting somewhere in letting the world know that unique capabilities are a strength. Looks very exciting and such potential!

Employment Options for Autism

"Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will spend its whole life believing that it is stupid."    So said Albert Einstein. Unfortunately, the education system is woefully behind in recognizing the untapped potential of people with autism. They have unique abilities. They are able to sustain their attention on their preferred activities and interests for inordinate amounts of time. They appreciate and thrive on routine, rote work. They have a phenomenal ability to focus on details. These are all characteristics that can be applied to a work setting, given the social support that is also needed.

There are issues, clearly, that need to be worked on. Being organized, arriving to work on time, dressed neatly, hygiene issues - all of these are areas where the person with autism needs guidance. But is that impossible?

I recently learned of a Danish group called "Specialisterne" who are looking to create a program for people with autism here in the bay area. It sounds like a great model, with lots of potential. And also a group in San Francisco called the "Specialist Guild". So, with the tsunami of children aging out of schools and no place to go but day programs, we all should be looking at these models and exploring others. There must be a way to help our students not be 'consumers' of resources, but contributors. We should not be viewing them as a burden within a community, when that can be an unnecessary state. They have many ways that they can be more active participants in the world and they sure aren't going away. So, we need to figure this out!

Being Aware of Autism

We have certainly come a long way in raising awareness of autism from the days when I first started working with these kids 35 years ago (35??- really???). I would tell people I worked with autistic kids and they would respond with "oh, are you artistic yourself?" And then a lengthy explanation of what autism was in response to suggestions that these children were really emotionally disturbed, brats, spoiled, rude,  etc. Now, most people know or have some idea of what autism is and accept that it is not caused by 'refrigerator' mothers. And usually they are aware of someone who has autism - a family member, neighbor, friend's child. But as the saying goes, if you know one person with autism, you know one person with autism. They are all so different!

The increase in awareness is very evident when speaking to young people of child bearing age. Coming from a large family (there were 10 of us and 5 in my husband's family), I have 36 nieces and nephews. Since they are all aware of what I do, I get lots of questions regarding their chances of having a child with autism and they are very concerned. I know I would be. The chances of 1 in 88 children having this disorder is downright scary. While there is likely a very strong genetic predisposition, there is something or things in the environment that is triggering the autism to manifest itself. Until we discover whatever these things may be, no one will or should rest easy. The consequences for all of us are far too great. The lifetime economic needs, not to mention the emotional strain and loss of productivity in a family can be extreme. So, while its great we have definitely increased awareness, there's still much to be done to solve this incredible enigma. 

The Rise in Autism's Prevalence

All over the news today is the CDC's reported findings of a significant rise in the numbers of children being diagnosed with autism - 23% in cases from 2006 to 2008 and 78% since 2002. The incidence is now 1 in 88 children, and with boys, who have five times the rate as girls, the incidence is a shocking 1 in 54. Some of this is due to better diagnosis and increased overall awareness, so parents are more likely to request an assessment regarding concerns of their child. Hopefully, this new research will lead to some kind of standardization of diagnosis, so there will be fewer children being denied the important services they need and deserve. There is no question that this is an epidemic, yet there still is no real understanding of the causes. It is very frightening and certainly would give young people pause in their family planning.

It is good that research is finally focusing more on the relationship between genes and the environment rather than just genetics. Unfortunately, there are no medical interventions to date; the only intervention is educational. And the reality is that services are lagging sorely behind. There is so much to be done. The world is not at all equipped for this phenomenal number of children coming along. http://yourlife.usatoday.com/health/story/2012-03-29/CDC-Autism-is-more-common-than-previously-thought/53856542/1

The Toll of Caretaking

Two weeks ago, our small community experienced a horrific tragedy with the murder-suicide of a mother and her autistic adult son. Although we can never speculate as to the mindset of any another person, I believe we can likely assume that the stress of caregiving may have played a part in this very sad event. At a grief counseling session with the parents shortly after this tragedy, many there spoke of their own excessive anxiety and stress levels. They expressed understanding of how it was possible that a parent could be driven to do something so drastic. 

There are so many stresses in caring for a child with autism. Mixed in with a parent's constant sleep deprivation, frustration, loneliness, and frequent isolation is the worry of who will take care of their child when they die. These parents know that their kids are not easy to live with. Who besides a parent can love a child unconditionally and tolerate all their behaviors and quirkiness?  Parents also recognize with brutal clarity how vulnerable their child is to exploitation and even abuse, especially those who are on the more involved end of the autism spectrum. 

In most situations, it is the mother who is the primary caregiver and often must forego the opportunity to work outside the home or maybe only allow for part-time employment. Women typically have a difficult time admitting or even recognizing that they may be under insurmountable stress in the best of circumstances. Compound that with the additional problems of caregiving and we may have an insight into the kind of 24 hour on-call life these parents experience. But women are not the only ones stressed. A child who requires constant supervision for safety, hygiene and overall health will tax the emotional resources of an entire family.

As the caretaker, the parent does not have much time to reflect on what the future holds. They tend to take on each day one at a time. But certain milestones will force awareness of the passage of time – as children of family friends get their driver’s licenses, go away to college, marry. All are reminders that these are not the cards the family of the person with autism has been dealt. When a parent actually takes a moment to process this information, it can be overwhelming. When will it ever end? Will it ever end?

Some possible lessons learned from this tragedy are that we have all have to help one another, especially keeping in touch with other parents who really know the day to day struggle. Also, as those of us who work with these students, we would want the parents to know how very much we care for all of them – students and their families. Our staff was so significantly devastated by this sad and shocking event, it surprised the family completely.  Would that we had known! It is in our nature to want to help, so take advantage. And should a child be placed in a group home, we would watch very carefully to look for changes in behavior, food, dress, anything that might alert us or the parents that something may be amiss. Yes, it would be different, and it would never be the same or replace home, but that doesn’t mean it is not a reasonable option to allow parents to experience their child in a different way.

We miss the two who died tremendously and think of them with very heavy hearts. My only hope is that others will pay more attention to families who are struggling and even check in on those who seem to be doing fine. Because we all know caretaking for a person with significant disabilities is not at all easy.

A Convergence of Autism and Alzheimer's

Those of us immersed in the world of autism know that the numbers of children receiving that diagnosis are truly increasing, and likely will continue even with the upcoming changes of the DSM-V. Providing the education, housing and overall assistance that the families and these children require will cost everyone - and lots! There simply is no inexpensive way to educate these kids short of denying them services. And that may be a by-product of the new DSM-V; eliminating some of the previous categories of people who fall under the 'spectrum' label and thereby not providing them the services they need. Nonetheless, the lifetime expense of a person with autism are significant, with education and housing particularly driving the costs.

However, at the same time we are seeing the incidence of autism rising, we are also hearing much about the impending tsunami of baby boomers approaching old age. As older people are much more likely to suffer strokes, heart disease, Alzheimer's, etc., their disabilities will also demand increased funding to pay for services. And we are living longer. This convergence of two very costly groups should be at the forefront of policy makers' agendas. But I certainly don't hear much about it other than notice that both populations are increasing in size. No mention of how we will be able to pay for all this.

How will we be able to care for all these people and make the services more cost effective? Certainly the focus on healthy life styles is important as it may keep older people healthier longer and out of the system. For people with autism, I think it is critical to not view them as 'consumers' but as people who can participate and contribute in their local communities. The more opportunities they have to both volunteer and even work, the better. As the rest of the community becomes more familiar with people with disabilities, they are more likely to tolerate the differences people with disabilities display. Everyone will benefit, including older people. Yes, it is a Pollyanna way of looking at things, but I'm not sure what else can be done until there is a true understanding of what the issues are that we all are facing.