My good old Dan has led me much farther afield than I ever imagined he would when he was born, and he has always brought me to people who can guide us right — eventually. There have been many wonderful therapists and teachers who have helped him, and he has made slow but steady progress. While at one time, he spoke few coherent words, had tantrums with dizzying frequency and seemed as if he would never be toilet-trained, now he is able to speak clearly (although he will often talk about friends from preschool as if he saw them yesterday), read and write, play piano and compete in the Special Olympics (he won a gold medal in swimming last year). He is so affectionate and warm that many of his therapists have kept in touch with us for over a decade after they stopped working with him.

His level of functioning today is a triumph in many ways. But in spite of all the therapists’ work and Danny’s efforts, only a mother as crazy as I am would think he could ever live independently. He is still too impulsive to cross the street alone, although we have worked on this with him for years. Many other skills necessary to living life as an adult still elude him. On his birthday, his father and I will become his legal guardians; the paperwork is already filed. But part of me still hopes and believes one day he will be free to make his own choices and live his own life. Figuring out how to make that happen is the issue.

Various professionals promised when he was a toddler that if I put him in their program and followed their advice religiously, he would be mainstreamed within three years. That was more than a decade ago. “I thought it would soon be clear and fair,” as Wills sings. But it’s been a much rockier road than I ever thought when Danny was first diagnosed. My marriage disintegrated, and dealing with all the changes that brought was a huge setback for Danny, who understood less and took it even harder than most typically developing children would. Danny continues to have just enough tantrums to ensure that no high school will consider mainstreaming him. And in three years, the education system is finished with him where we live. I’m trying hard to figure out his next step.

Many parents around the world are undertaking a similar journey. When I published my novel, If I Could Tell You, about four mothers in New York whose children had just been diagnosed with autism, I received emails from families on every continent. They were all working as hard as they could to help their children, and many observed little progress.

There are days when I find myself humming along to the lines, “Blue skies have failed/So we’re on our last trail/Underneath these dusty skies.”

But we’re not on our last trail. And as I plan a day of train rides followed by a birthday cake (Danny loves trains), here are a few things the last decade and a half of being the mother of a child with autism has taught me:

1. Once your child is diagnosed with autism, you find out who your real friends are, and who the staunchest allies in your family are. That can be tough, but in the end, who needs people who don’t accept you and your child?

2. Autism is unpredictable. Danny still surprises me, on an almost daily basis.

3. If you have other children who are not on the spectrum, you will have to fight to give them the attention they need. It’s easy to push aside the typically developing kids, but they are in an even tougher spot than we are: At least we chose to be parents, but they didn’t choose anything.

4. Almost everything about autism is difficult, but it isn’t all bad. For example, it’s tough and sometimes impossible for people on the spectrum to lie. Try finding a politician with that quality.

5. There’s never been a better time to have a child diagnosed with autism.As the numbers go up, awareness is increasing, so you’re more likely than ever to find people who understand what you’re going through.

6. Autism does not mean your child does not have his or her own personality. As Dr. Stephen Shore, a musician and author who was diagnosed with Asperger syndrome as a child, wrote, “If you’ve met one person with autism, you’ve met one person with autism.”

7. Teachers who work with children with autism are underpaid and overworked. If you appreciate their work, tell them as often as you can. They’ve earned our gratitude.

8. It helps to be upfront about your child’s autism when dealing with friends, neighbors and (especially) co-workers. Let them know why you need a flexible schedule. My editors and co-workers have been unfailingly great about my need to take my son to therapy sessions. If you give people the chance, they are often very helpful.

9. Give yourself a break, because no one else will. Although parents are no longer officially blamed for their children’s autism, as they were during the“Refrigerator Mother” theory era, people are often critical of our parenting. Some days, everyone else seems to know exactly what I should do with Danny, and exactly how I should do it. But then I remember: None of these people could handle him for even an hour.

10. When you hear about typically developing kids reaching milestones that it seems unlikely your child will ever achieve, it will hurt. But bite your tongue if you can and don’t scream something like, “Who cares if your kid didn’t get into the college of her choice? If only my kid could… “

11. Find the right teacher or therapist and your child will flourish. I’ve found that the therapist is more important than the type of therapy. It is imperative that the therapist establish a close, warm relationship with the child. Sometimes the people who work best with Danny are not particularly at ease with me, but they shine with him, and that’s what is important. Dr. Temple Grandin, the engineer and author who has written eloquently of her autism, said, “I cannot emphasize enough the importance of a good teacher.”

12. Try to see the world from your child’s point of view. This is consistently the most helpful strategy for trying to help Danny.

13. If you want to change your child, first you have to change yourself. In order to help Danny, I’ve had to become more flexible, focused and understanding.

14. Practice “positive talking” — these kids hear the word “no” all the time.Adults have a hard time accepting criticism even at a once-a-year job review, but kids with autism are constantly being told what they’re doing is wrong. Make corrections as constructively and positively as you can.

15. Trying to help our children communicate and become more independent doesn’t mean we don’t love them for who they are. People on the higher-functioning end of the autism spectrum can make their own choices and live independently. Lower-functioning people with autism need more help, but it doesn’t mean we love them any less. Autism isn’t eccentricity or a lifestyle choice, and low-functioning people with autism are very vulnerable to all kinds of abuse. As parents, it’s our responsibility to help them learn as much as possible.

16. Every life has value. I believe my son is as important to the world as any of those people who give him dirty looks when he jumps up and down in a store.

17. You have to dream big for your child — if you don’t, who will?

18. Dallas Buyers Club, the Oscar-winning film about AIDS activism, should become a model for autism parents. AIDS activist Ron Woodroofrefused to accept that there was no treatment for HIV when he tested positive for the virus in 1985, and did not stop until he found a medication cocktail that worked. Twenty years ago, autism was diagnosed once in 2,500 children, and now the CDC puts the figure at one in 68. That jump is a public health crisis and we have to sound the alarm bells and push the medical establishment to treat it as such, just as AIDS activists such as Woodroof did.

On Danny’s birthday, I may find myself crying, as I often do, when Bob Wills sings the last lines of “Dusty Skies,” “These ain’t tears in my eyes/Just sand from these dusty skies.”

But then Danny sits up, gives me a killer smile and asks about his beloved cat who died a decade ago — his way of saying, “Good morning.” As he gets dressed, he sings along to the next songs on the CD, “Back in the Saddle Again” and, even more on target, “Don’t Fence Me In.”

No one envies a soldier’s mother.

The worry. The sleepless nights. The fear that your child will suffer harm, both physical and psychological.

Especially in Israel, where I live, military service is tough and dangerous.

So, how is it that I find myself envying parents whose children are soldiers?

Danny at his pre-military training camp.

It’s because my son Danny, who turns 19 soon and who was diagnosed with autism at the age of 3, can’t serve. He can’t be drafted and he can’t volunteer. Although just last week there was a news item about a high-functioning young man with autism distinguishing himself in the Israel Defense Forces military intelligence unit, Danny needs too much supervision to be a part of the army.

His school has participated in pre-military training programs, where they did all kinds of workouts (without weapons, of course) in the desert and wore uniforms. He loved it. But even though there is a unit in the army where people with special needs serve, they are better able to focus, follow directions and understand abstract concepts than my son.

Danny can’t even cross the street by himself, because he is too easily distracted to take note of oncoming traffic and the colors of stoplights. He can talk more easily about a beloved cat that died 12 years ago than he can about what he did this morning.

Of course I don’t want him to be in the kind of danger he would be in if he served in the military and I have nothing but compassion for parents who worry about their soldier children every day and night.

In addition, I am on the left and have great political misgivings about what the IDF directs its soldiers to do much of the time and where it sends them.

But not being part of the military in Israel is to be out of the mainstream of society in a more decisive way than anything that has come before for Danny. All Israelis, male and female, are drafted (or volunteer if they have certain medical conditions, such as epilepsy, that prevent them from being drafted), and serve two to four years, except for most ultra-Orthodox Jews and Arabs. It is a nearly universal experience here, a much more common rite of passage than going to college is in America.

We are neither ultra-Orthodox nor Arab, and every time I meet people and they ask me if I have kids and how old they are, the inevitable follow-up question is about what Danny is doing in the army.

When I tell them he isn’t in the army and why, there is usually polite silence.

The truth is that for Danny, not being in the army is not a problem. Although he is fully bilingual in English and Hebrew, can read and write and has a phenomenal memory, he doesn’t seem to fully understand that he is an adult. At synagogue, he finds himself drawn to much younger children, and seems to see them as his peers. On some level, of course, he does realize he has grown, but any time I try to have a conversation with him about it, he cuts me off, saying, “I don’t want to talk about it.” He knows, and he doesn’t know.

I also know, and don’t know.

When I wrote a novel, If I Could Tell You, about four families whose children are diagnosed with autism at the same time, I deliberately chose not to set it here in Israel, because I was not prepared to deal with the issue of military service. I guess even then I didn’t want to think about it.

In an article in The New York Times Magazine last July, Ruth Padawer wrote about children with autism who eventually lose their diagnosis. What many people got from that article was that approximately 10 percent of children with autism grow out of the diagnosis. What I got out of it was that 90 percent didn’t, even when they received identical treatment to the 10 percent who did, exactly the kind of treatment that Danny has gotten.

Even the experts quoted in the article couldn’t say why things turned out this way.

The publication of this article came at a very difficult time for me. There were many changes at Danny’s school because of the Israel-Gaza war last summer, as teachers were called for military reserve duty. For a complicated set of reasons, the afternoon program at his school was closed for the duration of the war, and all the changes were very stressful for him. His tantrums became much more frequent. When an 18-year-old has tantrums like a toddler, it’s much harder to handle. I was still dealing with the paperwork to become his legal guardian. Reading about the lucky 10 percent couldn’t have been more discouraging.

I often thought of the 2009 University of Wisconsin Study, the one that showed that mothers of children with autism experience levels of stress comparable to combat soldiers. In my opinion, so do many people with autism. Their challenging behavior often stems from fear, from terror of changes or the unknown.

As hard as this period was for me, it was much harder for Danny, and that was what hurt the most.

It was a particularly crazy time for me to wish that Danny could have been part of the military. Yet I did, intensely so. It was hard for me to talk to friends with children Danny’s age, who had just joined or were about to join the army. My friends with 18-year-olds back in America, where I grew up and where Danny was born, were helping their kids pack for college.

But in the end, I realized that the green uniform was just a symbol for what I wanted for Danny: the chance to live an independent life, one where he would be able to make his own choices and live the life he wanted. I still hope he will achieve a measure of independence someday.

That’s really what most parents want for their children. And even though he can’t express it, on some level, I think that’s what Danny wants for himself. All the habits that go along with his autism, the need for routine and repetition, are ways that he soothes himself and keeps himself going. Hearing the same stories over and over helps him, and so does looking at snapshots every night of all the cats we’ve ever owned. He is often scared, as a soldier might be, and he is just as brave. He faces a tough fight every day, and I am proud of him.

http://www.audible.com/pd/ref=sr_1_1?asin=B00COMOZ6C&qid=1368149127&sr=1-1

It’s official: The astronomically high numbers on autism released in 2012 by the Centers for Disease Control — that 1 in 88 children will be diagnosed with the disorder — have jumped even higher. The CDC came out with new figures in March showing that it’s now 1 in 50 children. Some have disputed these new statistics, but I wouldn’t know how to. I’m the mother of a 16-year-old with autism, not an epidemiologist. And I can certainly say, based on my own experiences seeing children of old friends and colleagues being diagnosed every year, the numbers seem to be on the rise.

Last year, just after World Autism Awareness Day when I published my novel, If I Could Tell You, about four families coping with autism, I began hearing from parents of autistic children from all over the U.S., as well as the world: Japan, India, Norway, Israel, France, Italy, Britain and Argentina.

One subject that comes up often when we chat are the many misconceptions people still have about autism. So, I’m going to list the myths that bother me the most. While no one believes all of these, many people still believe some of them.

1. People with autism are all “Rain Man” geniuses. In truth, only between 5-10 percent have what are called “savant abilities,” such as the ability to tell if a large number is prime, to play a piece of music by ear or to make a detailed drawing of a building they’ve only seen once. It’s fascinating when people have such skills, and that’s most likely why savants receive so much publicity. But most kids are like the son of novelist Nick Hornby (High Fidelity, About a Boy), whose only remarkable talent is the ability to hear someone opening a package of potato chips from the other end of the house. That’s what my son is like.

2. People with autism are all mentally disabled. That’s the flip side of the Rain Man stereotype. There are still lots of people out there who think that if kids with autism can’t speak, they are mentally disabled. According to Scientific American, “Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70 to 80 percent of the affected population,” but common sense should tell people that that is because most of them have no interest in the IQ test and often don’t complete it or pay much attention to it.

3. Autism comes from bad parenting. Bruno Bettelheim popularized the theory about autism being caused by “refrigerator mothers” (which had the horrible result that, for a generation, women who had children with autism were blamed for it). About as many people believe this today as think the earth is flat, but now and then, I bump into someone who asks whether I had trouble bonding with Danny when he was a baby. Any number of new moms may have “trouble bonding,” but that simply isn’t what causes autism.

4. Autism is just a kind of eccentricity. Many people with autism are eccentric (and creative and original), but it is not a lifestyle choice. There are many bloggers claiming to be on the autistic spectrum who say that autism is simply a different way of looking at the world and that parents who want to teach their children skills such as speech or using the toilet are somehow oppressing them or don’t love them. Part of the problem is that autism is a spectrum disorder, and those on it range from totally non-verbal people who bang their heads against the wall to people like Sheldon from “The Big Bang Theory.” The critical difference, obviously, is that the Sheldons can make their own decisions about their lives. There’s nothing wrong with spending most of your days dressed as a character from “Star Trek” if that’s what makes you happy. But that is worlds away from being so disabled that you cannot tell anyone you are being abused. Perhaps in the future, someone will invent a term that describes the Sheldons better than “high-functioning autistic” and they won’t be lumped together with non-verbal people with autism who are unlikely to ever live independently.

5. People with autism feel no empathy or affection. People with autism sometimes have troubleexpressing affection, but it doesn’t mean they don’t feel it. I have spent a great deal of time with people (both children and adults) on the autistic spectrum and I believe that they feel the same range of emotions we all do: fear, happiness, nerves, anger, etc. It may be difficult for them to understand that everyone doesn’t know the same facts that they do, but that is very different from not feeling empathy. When I’m sad, my son will look at me warily, and then say, with hope, “You’re feeling much better now?” When he was first diagnosed, a distinguished psychiatrist told me that it was “rote behavior” when my son hugged me and that didn’t indicate that he felt affection for me. Later, a teacher told me that my son only hugged people “because he craved sensory input.” I was very upset, but then a neighbor said, “Your son is the warmest kid I’ve ever seen.”

6. There are many treatments that cure autism. There are therapies that treat autism, but nothing that cures it. Applied Behavioral Analysis (ABA), which many tout as the treatment of choice, helps some and does not do a great deal for others. My son and other children I have known have actually deteriorated on ABA programs. The same is true for Floortime. Similarly, drug therapies help alleviate certain symptoms of autism in certain kids but don’t help others.

7. Scientists understand what causes autism. Yes, and every day a new study comes out showing that something else causes it.

Let’s move on and put these myths to rest so we’ll have more to celebrate next year on Autism Awareness Day.

“The Jerusalem Post” film critic on parenting and her return to short-story writing.

via Raising autism | JPost | Israel News.

http://www.huffingtonpost.com/hannah-brown/autism_b_2089725.html

President Obama,

Congratulations on your reelection! I was one of the millions who voted for you, and as the mother of a teenage boy with autism, I am grateful that you did much in your first term to help families coping with autism. When you signed the Combating Autism Act legislation on September 30, 2011, which assured continued federal support for autism research, services and treatment for another three years, many parents of children with autism were pleased. Declaring World Autism Awareness Day on April 2 was another important step.

People with autism and their families look forward to the hope and change that you spoke of in your acceptance speech today. Here are a few facts about us that I hope you will keep in mind over the next four years:

1. We are a fast-growing constituency. According to statistics released by the Centers for Disease Control in March 2012, 1 in 88 children in the USA has an autism spectrum disorder. This is a 23 percent increase from the CDC’s 2009 report. More children will be diagnosed with autism this year than with cancer, diabetes and AIDS combined.

2. We don’t have much cash. Autism takes a toll on families, both emotionally and financially. Many parents of children with autism divorce, and even when the parents stay together, autism drains families financially. A recent study by the Center for Autism Research at the Children’s Hospital of Philadelphia , published in the journal Pediatrics,  reported that mothers of children with autism earned, on average, less than $21,000 a year. This was 56 percent less than mothers whose kids did not have health issues. The study also found that mothers of children with autism work seven hours less per week on average than mothers whose children did not have health problems. Family income of families of children with autism spectrum disorders are 28 percent less than those of families whose children had no health limitations. Where does all the money go? Even though some treatments for autism may be covered by our health insurance, many are not. And there are many other costs. People with autism (both children and adults) who are non-verbal or who have limited verbal skills can never be left home alone (what if, God forbid, they have to call the fire department or deal with some other emergency) and all those hours of babysitting add up pretty quickly.

3. We don’t have much patience. Starting early is important in treating autism, so we are often in a rush. When my son was diagnosed with Pervasive Developmental Disorder/Not Otherwise Specified (PDD/NOS), a mild form of autism, at age 3, I learned to my horror that he was already too old for early intervention programs. One critical way in which the government can help us is that it can minimize the red tape associated with getting young children into the special-needs system. Just as you stood with Gov. Christie in New Jersey and pledged that the federal government would do its best to cut down on any paperwork that stood between people displaced by Hurricane Sandy and the services they need, the government can do the same when helping children with autism. While many of the funds for special-needs children come from state and local governments, there are federal monies available for some schools and services. If you lead the way, officials at every level will ease our path to getting our children the help that they. You can also help allocate more money to fund research into the causes of autism and new treatments.

4. We are a diverse group. People of all races, ethnic groups and religions are affected by autism. The CDC reported last March that the greatest increases in diagnosis of autism in recent years were among Hispanic children (110 percent) and black children (91 percent). Scientists suspect that some of this increase is due to greater awareness and better diagnosis among these groups. Whatever the reason, the fact is that Americans from all backgrounds are grappling with this issue more than ever.

5. We’re in it for the long haul. In the vast majority of cases, people do not “recover” from autism. It’s a lifelong condition. That said, high-functioning people with autism can often lead totally independent lives, while many others are able to achieve a degree of independence and fulfillment with just a little bit of extra help. Some need a great deal of extra help. But for all our children, the key to a better life is being as much a part of their community as possible. The good news, for you and for us, is that the more independent our children become, the less the government will have to pay to support them over the course of their lifetimes.

So best of luck to you and your family as you go forward, and please keep us in your thoughts.

Best,

Hannah Brown

(aka Danny’s mother)

http://www.huffingtonpost.com/hannah-brown/autism_b_1973619.html

http://www.barnesandnoble.com/w/if-i-could-tell-you-hannah-brown/1103913374?ean=2940014516952&itm=1&usri=if+i+could+tell+you%2c+hannah+brown

http://www.amazon.com/If-Could-Tell-You-ebook/dp/B007VESVWM/ref=kinw_dp_ke