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Diagnosis: Autism

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Diagnosis: AutismSurviving the Worst News You'll Ever Get
Question: I saw my pediatrician yesterday, and she asked me if my two-year-old child was talking. I said he doesn't say a word yet. Then she asked if he played with other children. I said he doesn't take much interest in other children, and sometimes he just seems like he's in his own little world. Then she pulled out a brochure on autism. Just like that. I was shocked. Is it possible that a child this young could have autism? And, if so, what do I do now?

Question: My child is four. When she was three, she could recite nursery rhymes and count to ten. She also knew most of the alphabet. We thought she was a genius. But in the last year she hasn't seemed interested in talking with us much. At the park she pushes the other children away and just seems to want to sift sand through her fingers. My sister asked me if I've considered the possibility that she has autism, but she likes to cuddle with me and doesn't seem to mind being touched. That doesn't sound like autism, does it?

Autism is one of the most alarming diagnoses a parent can hear. Every parent has hopes and dreams for her child, and often these can be shattered when the child gets diagnosed with autism. Most other diagnoses dictate a clear course of action and lead to an undisputed likely outcome, but every child with autism is different and will progress differently. There is no known cause and no known cure. Not only is it a serious disability – it's also a bewildering one.

I love my job. In fact, I am one of the few people in the world who can honestly say that each day I get up, I feel fortunate to be able to do something I love. But delivering the news that a child has autism is the one part of my job that I hate. Fortunately, most people who bring their children to see us already have a diagnosis or at least a suspicion that their child has autism – after all, they are coming to an "autism center." But when I do have to be the one to tell a family that their child has autism, it's painful and difficult. The one consolation I can give the parents is that with good intervention their child is likely to improve, and that although I cannot read the future, many children do improve enormously.

What Is "Autism" Anyway?
To understand what autism is today, a little history is helpful. Relatively speaking, the field of autism is young. In 1943 the term autism was first used by Leo Kanner, who wrote a paper entitled "Autistic Disturbances of Affective Contact." Autistic literally means "alone," and that's what Kanner observed – a tendency in these children to want to be alone. In this paper, published in the Nervous Child (a journal that no longer exists), Dr. Kanner described eleven children between two and eight years old who had similar symptoms, which included difficulties communicating with others, difficulties interacting with others, and unusual interests. Prior to this article, children with these symptoms were usually labeled "schizophrenic."

Page 2Although the symptoms of autism have been refined, these three general areas still continue to provide the basis of the symptoms of the spectrum. That is, to be diagnosed with autism, children must have difficulties socially interacting with others; they must have impairments in communication; and they must also show restricted interests. This sounds pretty straightforward, but it's complicated by the fact that although most agree that the disability is neurological, no biological marker has been found. That means that there is no blood or chromosomal test that can tell you if a child has autism. The diagnosis is simply based on observation of the three symptoms, and the expression of these symptom areas can vary considerably. For example, a child who socializes fine with adults but has no interest in children his own age would qualify, as would a child who has absolutely no interest in either adults or other children. A child who echoes everything another person says, a child who can make short sentences but cannot maintain a conversation, and a child who says nothing whatsoever would all qualify under the impaired-communication symptom. And finally, the child who spends all day riding her rocking horse, the child who spends hours each day lining up his mom and dad's shoes in a certain specific order, and the child who only plays with one toy repeatedly would all be a "yes" on the restricted-interests category.

To make things even more confusing, most children express some of these symptoms, so it's not even a simple "Do they have this symptom?" but the more complicated question of "To what extent do they have this symptom?" that determines where they fall on the continuum. In other words, does each symptom area fall within or outside the typical range?

If your child has difficulties in all three areas (social, communication, and restricted interests) that are outside of what would be expected from a typical child, she would meet the diagnostic criteria for autism. Now, let me complicate things even more for you: there are other disabilities that fall into the Autism Spectrum category.

For example, Asperger's syndrome occurs when the child doesn't really have any delays in language per se, but does have difficulties in social interaction. These children will also tend to have special interests and problems making conversation. For example, we work with one little boy who only wants to talk about lavatories in airplanes. Another only wants to talk about Rolex watches. Kids with Asperger's syndrome can become experts on certain topics, but these topics may be of little or no interest to others, while they themselves often show little interest in what occupies their peers.

Then, there is PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), also called Atypical Autism. Children are labeled with this when they have only two of the three categories. That is, they tend to have difficulties with social interaction and either communication difficulties or restricted interests, but not both. So, as you can see, over time, in an attempt to make the diagnosis more homogeneous, more subcategories of Autism Spectrum Disorder have been defined.

Hard News to Get
I saw one family not long ago with a nineteen-month-old son – cute as could be. But Caleb didn't say one single word, he wasn't interested in anyone, and he spent the full two hours we were with him spinning in circles. He didn't play with any toys in the room and didn't respond to his name. He had such clearly pronounced symptoms of autism that there wasn't even any question in my mind what his diagnosis should be.

Page 3The parents had a book on autism with them and had brought Caleb to our center because the child's cousin had autism. I assumed they understood what we were dealing with and told them that we would be able to work with him. But then they asked if he had to have autism to participate in our center. At that moment, I realized that they hadn't yet accepted that any diagnosis had been made. So, as gently as I could, I said that Caleb appeared to have the three symptom areas associated with autism. To my surprise, they said they were hoping I would say that nothing was wrong with him. Nothing. That word was piercing, and I got that weird feeling like the blood is rushing out of your head.

I pointed out Caleb's specific symptom areas – that he wasn't talking yet (notice I said yet), that his social areas appeared to be a little delayed, which could happen if he wasn't talking, and that while he didn't interact much, he did seem to enjoy cuddling with his parents, which was a great starting point. I told them that there were good treatments available and that we would just take one symptom at a time and work on each one, and I was confident we would make progress.

The dad, who was quite well read and informed, said that although he agreed that his son didn't talk and wasn't interested in others, he really didn't see any restricted interests in his behavior. Very gently, I pointed out that a typically developing child of Caleb's age would be playing with toys and getting into things, but he was spending most of his time spinning, which would be considered a repetitive stereotyped behavior. The dad looked shocked. And I felt horrible. Maybe people who work at diagnostic centers and break the news several times a day get used to it, but I still haven't.

The father stopped talking and looked down, his shock turning to depression. Interestingly, the mother began to open up – she almost seemed relieved to air all the concerns she'd had about her son. Once again I reminded them that autism is just a group of symptoms, that there are good interventions available, and that the most productive way to proceed would be by addressing the symptoms one by one. We would begin with teaching Caleb words using motivational procedures, which would be likely to help his socialization and decrease the spinning.

I knew that all the helpful advice and hopeful suggestions I gave them still wouldn't make it any easier for them to get that diagnosis. (As a follow-up, we have worked with Caleb for about two months, and he's now saying about seventy-five words, has a bunch of social activities he loves, and only spins when he's not engaged in one of these activities.)

My Own Experience
Although I can't pretend to understand what it might be like to have a child diagnosed with autism, I have experienced what it's like to know there's something wrong with your child and not know what the outcome will be.

When I was pregnant, I had placenta previa. That's when the placenta covers the opening of the uterus, making it impossible for the baby to come out. The first sign of a problem was some blood spots during my third month of pregnancy. Distressed, I called up my doctor, and his response was shocking. He didn't invite me to his office, he didn't counsel me, he simply and abruptly said, "You're probably going to have a miscarriage. I've gotta run, I have a patient in my office. Don't worry about it." This was my first experience of what it was like to be at the mercy of an unsympathetic doctor.

I changed doctors after that, and psychologically, everything was better with the new obstetrician, but I continued to have bleeding, and when I was five months pregnant, I was put on bed rest and then hospitalized.

Page 4When my daughter was finally delivered, I immediately knew something was wrong. They didn't hand her to me as they had my first child. Instead, they rushed her into neonatal intensive care. When the pediatrician came to see me some time later, he said, "She's got an eighty percent chance of survival." I cried out, "You mean she has a twenty percent chance of dying?" He seemed surprised by my outburst and completely unaware of what it means to a parent to be told that her child's outcome is uncertain and possibly tragic. To him, the odds were still in our favor, and that was what he lived by – odds. But all I could see was that 20 percent possibility my baby could die. My husband told me later that the whole experience had been just as bad, if not worse, for him, as they were taking him aside and giving him these statistics all the way through. (She's a healthy, happy teenager now, I'm glad to say – I wish I'd known that then.)

I can't even begin to claim that my experiences compare in any way to finding out that your child has autism. But I can empathize with the pain of finding out that something is not right with your child and the fears that an uncertain prognosis can lead to. Over the years, I have talked with thousands of parents of children with autism, and I can tell you that getting the news is horrific, terrifying, stressful, and depressing. Parents react in different ways; they cry, they get mad, they deny that their child has autism. Sometimes they even accept it resignedly – but it's never easy.

No Way to Prepare Yourself
There are no known prenatal tests that can alert or prepare a parent for the shocking diagnosis of autism. Even after a child with autism is born, there may be signs early on that the child is not developing typically, but most new parents don't recognize or know to look for these signs. Therefore the family often assumes, for the first year or two of life, that everything is fine, especially because most of the motor milestones – sitting up, crawling, walking, and so on – seem to happen like clockwork.

For most parents, it's not until their child is eighteen months or older and still not talking that they start to worry and ask questions. Even then, they're likely to be told by friends and pediatricians that language develops at different times for different kids, and not to worry about it. They can lose precious time because of this.

There are some earlier signs (before words are expected) that can help you recognize possible symptoms of autism, if you know what to look for. For example, the child may not enjoy playing little games like peek-a-boo and may not point to items, preferring instead to take her parent's hand and place it on the desired object, such as the doorknob when wanting to go out. The child with autism may not respond to her name when called, or she may play with the same toy over and over again. Some parents even report that their child never cried for them when left in her crib but seemed content alone for long periods of time.

Of course, parents tend to remember these things after their children have already been diagnosed, but the truth is that most parents don't usually become very concerned until they notice that their child is not starting to talk.

Can Professionals Make Mistakes When They Give a Diagnosis?
Sometimes. But it's rare. Most children with autism can be reliably diagnosed before they're three, if the person who diagnoses them has experience and expertise in the area of autism. However, there are a few reasons why a rare mistake can happen.

Page 5The most common mistake is missing a child whose symptoms of autism are so mild that they're overlooked. In addition, sometimes children develop difficulties with communication and socialization before they begin to show repetitive behaviors or restricted interests, so they are not initially diagnosed as having autism but get the diagnosis later. Some have even hypothesized that the restricted interests and repetitive behaviors of autism are caused by the lack of social communication, but whatever the reason, if something is not right with your child's development, even if it's just communication and social skills, it needs to be addressed immediately.

Finally, sometimes people will suggest that your child has been misdiagnosed, even if he hasn't been. This usually happens when a child is showing considerable improvement. That is, some children who receive intervention at a very young age can get over some of the symptoms early on, and may appear to look more like they have a communication delay, Atypical Autism, or Asperger's syndrome. Which is still another reason to get intervention as early as possible – children can improve tremendously when they're little.

Could It Be Something Else?
The doctor who diagnoses your child will first need to rule out other possible underlying problems. How do we differentiate Autism Spectrum Disorders from other childhood disabilities that don't have a genetic cause? It can be tricky. For example, children with hearing impairments can exhibit similar symptoms to autism. My daughter did when she had severe and chronic middle ear infections. She didn't socialize, didn't respond, and spent the bulk of her time engaging in self-stimulatory behaviors. I've seen others like that too – it's rare, but it does happen. But many children with autism will respond to some sounds, like a candy wrapper opening or a favorite video, whereas children with hearing impairments won't respond to anything below their threshold of impairment. A good audiologist or ear, nose, and throat specialist will be able to help you rule out hearing difficulties as a possibility.

Another possibility is a language delay. If a child has a language delay, he will most likely have some difficulty interacting socially at the same level as his peers, but usually he won't avoid social interaction, like a child with autism. In addition, a child with a language delay doesn't generally have the limited interests we see in children with autism.

A lot of parents ask me whether their children may just be "late talkers," as Einstein was supposed to have been. Well, it is true that some children do learn to talk a little late, but it's rare that a child who has a significant language delay (even if it isn't autism) will overcome it without intervention. This only happens with a very, very small subgroup, and we really don't know what variables account for children who catch up without intervention. I wouldn't leave it up to chance. The right intervention won't hurt, and it will help, so waiting and hoping for another Einstein may be a waste of time and result in your child's falling further behind.

Finally, there are many other types of developmental delays. Usually children with developmental delays have somewhat flat functioning across the board. Children with autism tend to have strengths in nonverbal areas. They may be good at puzzles and nonverbal activities, and may even line up items in some order.

Page 6What Does the Diagnosis Really Mean?
The short answer is, unfortunately, that no one really knows. Autism is a name given to the cluster of symptoms I've discussed above. But every child expresses these symptoms differently. Don't try to compare your child to other children with autism. Your child is an individual. While one child may have a lot of difficulty controlling his self-stimulatory behaviors, like rocking and spinning, another will find language hard to master and, at the age of four, may still be nonverbal or echo everything you say. One may rage and hit; another may be calm and passive. One may dislike the feeling of being held tightly; another may cling to his parents constantly. You have to get to know your own child and what his needs are before you jump to any conclusions about who he is and what he needs.

At this point in time, no one can predict what a child with autism will be like as an adult – and don't believe anyone who says he can. One family we worked with had a three-year-old who would lie on the floor with all of his muscles stiff and straight, screaming nonstop. His parents were told, by professionals, that he would never have friends, that he would never marry, and that he probably would never talk. We started him on a program of interventions, and by kindergarten he didn't have any symptoms of autism whatsoever.

You never can tell. No one can.

But you can make a difference in the outcome.

How to Interact with Your Newly Diagnosed Child
When parents get the news that their child has a serious disability, they tend to question their own ability to parent that child and wonder if they have to treat her differently than they might have otherwise – more gently or more severely, more like a therapist, less like a buddy, and so on.

Here's the golden rule: When in doubt, treat your child just as you would treat her if she didn't have a disability.

All parents want to make their children's lives easier, and parents of children with autism are no exception. We all want to avoid situations or demands that are likely to cause tantrums or to upset our children. That's understandable, but if you're finding yourself in a place where you're constantly lowering your standards of good behavior and making excuses for your child because she has a disability, you need to stop and find a new approach. If you were expecting good manners and good behavior from your child before you knew he had autism, or if you expect a certain type of behavior from your other children, continue to insist on those things.

If you had goals for your child, stick to them. Don't assume there's anything he can't master in time. He may never have said a word, but don't let anyone jump to the conclusion that he never will. If someone says to you, "He's not learning X," assume it's the method of teaching that's failing and not the child. Researchers have studied every symptom of autism, and there are many ways to work on everything, from learning first words to keeping the conversation going. Keep trying different teaching methods until you find the one that works for your child.

Above all, don't lower your expectations: expect your child to overcome the symptoms of autism and lead a rich and fulfilling life. Your continuing perseverance is your child's biggest asset. If you give up, your child will never make it.

Page 7What Do You Tell Your Child?
Many, many parents of children with autism, especially children who are able to engage in social conversation, ask me whether they should tell their child that he has or had autism. I'm not really sure what the answer to this question is, but I do have some general thoughts on the matter, having observed some situations where this issue has arisen.

First, discussing a child's disability is an individual family's decision and often relates to just how much the child wants to know. My general feeling (and I must say that this is only a feeling, not based on any data) is that since we really don't know what autism is at this point, I think we may want to focus on symptoms and discuss areas of weakness and strength with our children. That is, like this book, you may want to consider discussing specific areas of your child's development, rather than labeling your child.

Let me give you some examples. Mia's mother complained that Mia sometimes came home saying that she just didn't feel like she was part of the social clique at school. Her mother asked whether this would be a good time to tell her that she had autism as a child and still continues to demonstrate some minor symptoms. I suggested that since she was so mildly affected, her mother just discuss her strengths and weaknesses. A few weeks later, when I was driving Mia in the car, we were discussing her little brother, and she said, "Avery learned to talk early, and I learned to talk late, but I learned how to read really early." These were the facts, and she seemed very comfortable with them. Presenting Mia with the information by discussing not only her challenges but also her strengths and pointing out that every child has strong and weak areas did not exacerbate her feelings of isolation and being different.

In contrast, we had a brilliant graduate student in our clinical psychology program who had received intervention in our center when she was in preschool and during the elementary school years. Although she excelled in college and graduate school, had a large group of friends, and was one of the nicest people you could ever know, her parents told her she had autism as a child, and she always worried about what was wrong with her brain. In fact, she was so stressed about it that she couldn't work with anyone who had autism.

However, not every child has difficulty with the diagnosis. We worked with one adolescent girl who had been in counseling all her life, and had a whole slew of psychological labels applied to her by various doctors for almost a decade. Finally, when she was fourteen a psychiatrist suggested that she had Asperger's syndrome, and that's how I ended up seeing her. One night I was talking to her mom on the phone, and she picked up the extension and listened in from the other room. She confronted her mother, who decided to show her my report. The report had very specific areas she needed to work on, such as responding empathetically to others, improving eye contact, decreasing inappropriate body posturing during conversations, and so on. But the important thing was that each area had effective interventions. This particular child was actually relieved to understand what her disability was, and was also extremely motivated to learn specific ways to interact with others, to engage in interesting conversations, and to address each symptom head on. So, for her, it was quite helpful to know specifically what the disability was.

Page 8I guess what I'm saying is, there isn't really a best way to approach telling your child he has or had symptoms of autism. The fact that we don't really know what autism is makes it even more difficult. Telling someone that he has "something," but no one knows exactly what that means, may be more difficult than simply talking to him about his strengths and weaknesses. On the other hand, some children may feel a sense of relief to know what exactly is going on, that there are interventions, and that there are a whole lot of other people who have the same challenges. So there are still questions as to how best to address this issue. As more children receive improved interventions so that they can reach a level where they can discuss their past symptoms, more research should help us determine the best ways to discuss the disability with children. Again, try to remember that each child has strengths, too. All of us have strengths and weaknesses, and it can often be a waste of time to dwell on weaknesses.

Good Treatments Are Available. Use Them.
With the right intervention, almost all children diagnosed with autism improve. There has been and continues to be much progress in the treatment of autism. Researchers around the country are making new findings daily. This book will help you start down the path of appropriate and worthwhile interventions and allow you to see how steady and knowledgeable efforts really can turn things around.

Similarly, remember that without treatment, your child will very likely get worse. Your child will not simply "outgrow" the symptoms of autism. Few children even outgrow language delays without intervention. You need to get a treatment plan of specialized interventions started as soon as possible.

Even if your child is very young and has mild symptoms, and you're not sure if she has autism, you still need to deal with those mild symptoms she's displaying – remember, labels don't matter, but symptoms do, and symptoms can and must be dealt with. You don't need a diagnosis to develop an intervention plan – helping your child with each and every symptom is what's important.

I can't stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The "wait and see" approach is detrimental to your child. Children with autism tend to avoid things that are difficult, and communication is difficult for them, so they avoid situations where they might be expected to communicate. As a result, they become more isolated and withdrawn. So it's critical that you get a program started right away.