Coming of Age, A Generation of Autism | 2012

Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain''s normal development of social and communication skills.

The New York Times
A Series of Articles on Autism By AMY LENNARD GOEHNER

As the explosion of children who were found to have autism in the 1990s begins to transition from the school to the adult system, experts caution about the coming wave.

“We estimate there are going to be half a million children with autism in the next 10 years who will become adults,” said Peter Bell, executive vice president for programs and services of the advocacy group Autism Speaks.

Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.

“We are facing a crisis of money and work force,” said Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services. “The cohort of people who will need services — including aging baby boomers — is growing much faster than the cohort of working-age adults that provide care.”

To help parents navigate this difficult journey, in January Autism Speaks introduced a free Transition Tool Kit for parents and their adolescent children with autism. The kit includes information about such critical issues as community life, housing, employment and developing self-advocacy skills. The tool kit can be customized by state for those who register online.

“There is a time you have to get over this hump where you are essentially acknowledging that your child is going to have autism for the rest of his life,” said Mr. Bell, the father of an 18-year-old son with autism. “Our hope with this kit is to help parents to start planning and not get frozen.”

Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

“If an individual needs 24-hour services, the staffing ratio is one to one,” said Charlie Lakin, who heads the Research and Training Center on Community Living at the University of Minnesota. “That means fewer people will get served, resulting in long waiting lists for other families.” Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin.

Living with one’s family may not always be best for a person with autism. Nor is it what many families, who assume their grown child will move into a group home, for example, envision for their future. But options are limited, and given the high demand for out-of-home residential services, Mr. Lakin said, “families really need to think about a longer and more central involvement in their adult child’s life than they have in the past.”

The good news is that many states are providing more support for people with autism who live with their families. They are also giving families greater flexibility and control over budgets with so-called consumer-controlled services, which reimburse families that hire friends or relatives, rather than outside caregivers, for regular care.

Connecticut and Arizona, for example, pay for care provided by family members, a growing trend. Other states, like Pennsylvania, have programs in which contracts are issued for people with autism to live with other families. And Vermont and New Hampshire pioneered a model of providing funding directly to families.

Some families have pooled their own money and entered into cooperatives with other families, a challenge that can take years. Families with children who have developmental disabilities “are relentless advocates and have been the most successful at garnering resources and services,” Ms. Thaler said. “I think it may be the vulnerability of people with developmental disabilities that evokes in families and professionals a level of extraordinary empathy that makes them powerful advocates.”

Among the most powerful advocates are siblings of those with developmental disabilities. “Sibs have always played a really important role; we just haven’t identified them as sibs,” Mr. Lakin said. “We’ve identified them as agency leaders and social workers occupationally. But the real impulse of their work is that they were a sibling.”

Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”

Mr. Lakin said: “It’s really about having people live the best life they can, in the place and with the people they want to live with. There’s no magic to that.”

Bring on the magicians.

By AMY LENNARD GOEHNER | Publish date: 4/13/2011
http://www.nytimes.com/ref/health/healthguide/esn-autism-reporters.html
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With Autism, One Size Doesn’t Fit All
Expert Q & A

David G. Amaral is the director of research at the M.I.N.D. institute at the University of California, Davis, and the principal investigator of the Autism Phenome Project, an early-phase research study comparing children ages 2 to 3 1/2 who have autism with their peers. The goal is to distinguish different types of autism based on extensive medical exams, gene and blood tests, immune measures, M.R.I. brain scans and other biomedical and behavioral markers. The researchers have recruited just over 300 families for the study and are recruiting additional volunteers.

Q. Where are you in the Autism Phenome Project study?

A. One of the major stumbling blocks of understanding autism is that it’s incredibly heterogeneous. Some kids with autism have severe developmental delays, but others have normal or even enhanced I.Q.’s; some have epilepsy, mental retardation or gastrointestinal problems. You are looking at kids who have very different biological and comorbid features, but all are under the umbrella of autism spectrum disorders. The goal of this project is to identify subtypes of autism. Once we identify those, we believe that we can go after the cause for each one in a more productive fashion.

It is almost certain that autism has multiple causes, and it might be better to study each one independently. We have now tried to do enough behavioral and biological analysis of the kids to see if there are clusters of factors that will allow us to subtype autism.

Now that we have 300 subjects, it turns out the answer is yes. Some of these types may be defined genetically, others by the pattern of brain development and still others by the presence of immune abnormalities.

We’ve just started publishing some papers on the development of the brain of kids with autism. Certain brain regions, such as the frontal lobe and amygdala, seem to have abnormal growth patterns. The amygdala, for example, which controls emotion — particularly negative emotion — undergoes an accelerated growth in about 40 percent of the boys with autism in our study.

Q. What does an enlarged amygdala tell you?

A. Brain growth is like a symphony, and all parts must be developing at the correct tempo. If one grows too fast, we believe that it may develop abnormal connections and ultimately function improperly. The real question is: Why does the amygdala grow out of sync with the rest of the brain?

Q. If the amygdala of a child with autism is enlarged, would that then correlate with a particular subtype of autism?

A. Right. It’s the beginning of being able to develop a subtype. What other features might correlate with the abnormal amygdala growth? We’d like to know what causes this rapid growth so that it might give us some targets for treatment that would be different from treatment of kids whose amygdala is normally growing.

For example, many people with autism have anxiety disorder. And the amygdala is a danger detector and involved in the generation of fear. We typically don’t see a lot of anxiety in kids this young. But as they get older, we’ll be able to determine whether they are showing greater signs of anxiety. So several features would come together that would constitute one type.

Q. How many subtypes of autism do you anticipate you will identify?

A. It’s too early to tell. There are indications that there may be types defined by abnormal brain growth or abnormal immune dysfunction.

Another thing that’s happened is that the field has gotten a clearer understanding of the genetics of autism. I think that it is safe to conclude that there is no single autism gene. We already know of about 20 genes that are risk factors. If there’s a mutation of one of these genes or a loss of the gene or even duplication, it can increase the risk for a person having autism. But if you have any one of those mutations, it doesn’t automatically mean you are going to have autism. And of those 20 genes, there’s not a single one of them that’s associated with more than a few percent of all cases of autism. The punch line is, in autism, one size doesn’t fit all.

. Is there a test to see if a parent is carrying a gene that causes autism?

A. No. The genetics are complicated. Some of the risk factors are hereditary or inherited from a parent. But we’ve also learned that some of the genetic mutations probably occur at conception, where you lose or duplicate DNA.

Q. There’s always talk of environmental triggers for autism. Is that related to the children’s propensity because of their genetic makeup?

A. That’s the most likely guess. You can have genes related to the immune system. And if your immune system is taxed and doesn’t work properly, that could lead to a result where you could alter brain development and go on to have autism. But we really don’t know which genes and which environmental stresses would be coming together.

But there’s evidence now that certain environmental factors contribute bits of risk. Some are surprising. Investigators here demonstrated that families who use flea and tick powder on their pets slightly increase the risk.

Q. Is it the case that the more you discover, the more testing you have to do?

A. What’s encouraging to me is that it’s not chaotic in terms of the data we’re finding. What is also helpful is once you identify one of these patterns, you can go on to do additional studies to understand the mechanisms leading to the disorder. This translates directly to targets for treatment.

Another example relates to the other part of the brain that grows too fast. It is the frontal lobe, located just behind your forehead. This cortical area is involved in social behavior, planning for the future, theory of mind, self-awareness. We’ve found that some of the kids have an abnormally enlarged frontal lobe. We are starting to see in this case that there are some behavioral correlations. For example, whether you have an enlarged frontal lobe or not seems to be associated with whether you had an early-onset versus a regressive form of autism.

Q. What’s the next step?

A. I’m convinced that longitudinal studies are essential to understanding autism. We’ve proven the feasibility of carrying out comprehensive biomedical studies of very young children with autism. We have started pilot studies with even younger children — starting at 6 months of age. These are siblings of children with autism who have a higher risk of also having autism. By studying the development of children over time, we are beginning to identify the most salient changes in their biology. We are seeing facets of autism that we would simply not see if only studying adults. The most striking feature discovered thus far is that the trajectory of brain development is dramatically altered in some children with autism.

Q. Was that a new discovery?

A. Several laboratories have identified abnormal brain growth in autism. This is really a developmental disorder. Something that is happening early on can have an impact on the rest of the development of the child and lead to a lifelong disability.

Q. Parents of children with autism have vastly different descriptions of them. Is that consistent with what you are learning?

A. This is a real reflection of how heterogeneous this disorder is. But if the biology of every kid with autism were unique, we’d never get answers in our research. I do think as we carry out these longitudinal studies, we’re not going to end up with thousands of autism types. I’d guess it will be in the tens, and maybe even fewer. And once we have the different types, what will be illuminating will be, ‘What’s the overlap between the different groups?’ There are behavioral similarities, and there may be biological similarities. Just as many tributaries feed into one main river, it may be that different genetic and neurological problems feed into one final common pathway that produces the behavioral characteristics of autism.

Q. You sound optimistic about someday finding a cure. Are you?

A. Over the last 10 years I’ve seen the amount of resources dedicated to research increase tremendously. The first stage to solving autism is to bring some clarity to what autism is. I think we’ve made really huge strides over the last decade. The Autism Phenome Project is a reflection of the intensity of effort in the field.

We also need to be very careful in using the word “cure.” I much prefer to think about decreasing disability and increasing the quality of life for individuals with autism. There are individuals on the autism spectrum that have very special talents and abilities. Would we want to “cure” these? Obviously not. I am optimistic that we are getting closer to an understanding of the biologies of autism and that this understanding will give us much clearer targets for prevention and treatment of the most serious forms of the disorder.

By AMY LENNARD GOEHNER | Publish date: 4/13/2011
http://www.nytimes.com/ref/health/healthguide/esn-autism-expert.html?pagewanted=1
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What to Ask About Autism
Questions for Your Doctor

Confronting a new diagnosis can be frightening and, because research changes so often, confusing. Here are some questions you may not think to ask your doctor, along with notes on why they’re important.

How do I know if my doctor is the right doctor to treat my child?

“You might want to ask your doctor if he or she treats other kids with autism,” said Dr. Fred Volkmar, head of the Yale Child Study Center and co-author, with his wife, Dr. Lisa Wiesner, of “A Practical Guide to Autism.” “You’re really trying to tap in to someone who is willing to take questions seriously and look into them and not say, ‘That’s the craziest thing I ever heard.’ ”

How can I help my child go to doctor and dentist appointments without her throwing a huge tantrum?

“There’s a lot you can do to detox the visit for the child,” Dr. Volkmar said. “You can buy a pretend stethoscope or make your own picture books. There are programs on the iPad and iPhone called iPrompts, which is a visual program for people with autism. Walk the child through what’s going to happen. The same with dental visits. It may take 10 visits before the child will sit in the chair. But most of the time you can actually get to the point where you can get the child to tolerate most of this stuff.”

My child is nonverbal. How can I tell when something is hurting him?

“We know that autism is a multisystem disorder,” said Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore. “When it’s not evident that there’s a certain body system that’s working as it should, we have to look to other indicators. Any time there’s an alteration in the child’s behavioral pattern, this could tell us something we need to be paying attention to medically.”

My child doesn’t have the social skills to play sports, yet I know he needs to get exercise. What can I do?

Dr. Volkmar said: “There are individual sports like swimming, tae kwon do, jujitsu, which are one on one. They are very ritualized and predictable, so those sports are good for kids with autism. Also horseback riding.”

There are so many support groups, especially for parents like me who are reeling with this new diagnosis. How do I know which ones to join?

Dr. Landa cautions: “You need to be careful about being with people who haven’t been able to move forward. You want people who are going to help you get new perspectives. Parents who have had children who have had really challenging courses can be an enormous sense of inspiration, telling you what they’ve done to overcome obstacles. And be careful of the people who claim to have the cure.” Dr. Cece McCarton, director of the McCarton Center for Developmental Pediatrics in New York City, emphasizes that need for support. “I try to tell the folks who come to see me, ‘This is not a disorder that you can battle by yourself,” Dr. McCarton said. “Just like it is pervasive within the child, it’s pervasive within the whole family structure.’ ”

I want to learn all I can about autism to help my child. But there is so much information on the Web. How do I know what to trust?

Dr. Volkmar said he and his staff typed in “autism” on a search engine and looked at the top 100 Web sites that came up. “One third of them are either promising a cure or selling something,” he said. “The Web sites that tend to be the best are the government and educational Web sites.”

How do I know if the therapists who are treating my child are actually good?

Because the number of children with autism is so great, while there are a lot of great therapists, there are also a lot who are not up to speed. Dr. McCarton tells parents to make a video of the child’s therapy session and send it to her. She said: “The child is a moving target, so a good intervention program is constantly changing with the developmental skills of the child. It’s not set in stone.”

My child is involved in so many interventions, it is hard to keep track of everyone and all the things I am supposed to be doing at home to help him progress.

There might be a number of people treating your child (like speech, occupational and behavioral therapists), and they need to be communicating with one another to be sure everyone is on the same page. While Dr. McCarton says it can be very helpful for parents to have a team “manager,” she cautions that if one person does take charge, “it has to be somebody knowledgeable who commands the respect of all the disciplines.”

I feel guilty spending all my time with my child with autism and ignoring my husband and other children. But I feel my disabled child needs me most.

Experts agree that if all the attention is focused on one child, the balance gets tilted: everyone in the family has needs that must be met. “It’s often mothers who bear the brunt of this; they wear themselves out,” Dr. McCarton said. “We encourage moms to do something other than just care for this child, whether a hobby or interest, or if they work — please don’t quit. It’s an escape! We try to get fathers together with other fathers, go out for a beer and let their hair down and talk about the situation in guy talk.

My younger son loves his brother, who has autism, but he gets angry that he won’t play with him and is embarrassed by his behavior. How can we help our younger son understand his brother’s disability?

Doctors often encourage the other siblings in the family to be included in therapy sessions. “Siblings are terrific role models,” Dr. McCarton said. “We try to facilitate the play between the two siblings so the sib without autism can begin to appreciate their sib who does have autism and make a connection with him or her.” There are also workshops for siblings of special-needs children, like Sibshops, offered throughout the country.

Every time I’m with other parents someone is talking about some new therapy, which of course makes me guilty I haven’t tried it yet. How do I know what to trust?

Experts agree: consumer beware. “I get asked constantly about 25 alternative therapies that are out there, such as diets, vitamins, swimming with dolphins,” Dr. McCarton said. “It’s a learning process for most people.” Parents should do their homework and not rush into anything that doesn’t have a proven track record.

My child is up and walking about all night. We’re exhausted!

Sleep problems are common in children with autism, and can may result from lack of exercise or lack of a consistent bedtime routine. In “A Practical Guide to Autism,” Dr. Volkmar recommends keeping a diary for one to two weeks to try to understand the problem better; increasing exercise and decreasing daytime sleep; and avoiding foods, drinks or activities that overstimulate the child at bedtime. He also recommends the book “Sleep Better! A Guide to Improving Sleep for Children With Special Needs,” by Vincent Mark Durand.

This is my first child, so I don’t really know if he is reaching his developmental milestones on time. Is there a test he should be given to tell if he has autism?

There are no blood tests to determine whether a child has autism. A doctor can make a diagnosis based on the child’s behavior and development. The federal Centers for Disease Control and Prevention recommends screenings for developmental delays and disabilities during well-child doctor visits at 9 months, 18 months and 24 or 30 months. Additionally, a specific screening for autism spectrum disorders should be made at 18 months and 24 months. Children who are at higher risk for an autism spectrum disorder, including those with a family member who has such a disorder, might need additional screening.

By AMY LENNARD GOEHNER
http://www.nytimes.com/ref/health/healthguide/esn-autism-questions.html

For More Articles On Autism from The New York Times visit:
http://health.nytimes.com/health/guides/disease/autism/overview.html?inline=nyt-classifier