*Please note: This post was updated by Dr. Heather on 11/22/2010 .
Autism diagnoses are skyrocketing, but is the incidence of autism really increasing? Are there really more autistic kids out there than there were before?
We don’t know for sure, but one major contribution seems to be the increasing recognition of developmental problems in children by professionals like me. In other words, is it possible that the increase in autism is simply an increase in our diagnosis of the disorder?
The single most frequent referral question I get, as a BabyShrink, is: “Is this child autistic?” Often, I see a two-year-old who is head-banging, language delayed, or performing repetitive behaviors. He may already have a speech therapist or other specialist who worries about autism. Or his parents may have seen Jenny McCarthy on Oprah, and say, “my kid does that!”
The New Autism?
When I went to grad school in the 1990s, we learned that Autism was a rare, severe, and life-long disorder of communication and social relatedness. These kids exhibited the most obvious signs of the disorder:
Near complete retreat from communication with others
Hand-flapping and other odd self-stimulatory behaviors
Severe developmental delays and behavioral outbursts
These kids really could not be taught in any regular school setting; They needed support and help in daily living for a lifetime. But as time went on, clinicians started to see less severe forms of these symptoms; we got better at recognizing them in their more subtle forms. As more behavioral health-care professionals were trained, we had more “eyes” looking for the problem. Parent advocacy and special education laws increased pressure on the school systems to widen the array of services for kids with less severe symptoms. Soon, I had parents and teachers asking me to diagnose autism or a related disorder so the child would qualify for intensive, expensive help that was only available under the autism spectrum range of diagnoses.
The pressure is tremendous; here is a child who has communication and other developmental delays. His parents have few resources. The school will only pay if there is an autism diagnosis. Many clinicians admit that they rationalize labeling the child “autistic” if it helps them get the services they need.
Digging Deeper: When Autism Diagnoses Are Misguided
So, back to the typical 2-year-old head-banger referral. A toddler I saw recently already had a new speech and language therapist, and an occupational therapist. They were concerned about his lack of progress in therapy. He had “lost speech”, meaning he no longer used the words he once did. One psychologist had already labeled him “autistic”, after spending just 60 minutes with him….in an office, not the child’s home, where he is most comfortable and most himself. I found a shy little boy who needed a lot of reassurance from his parents with me, a stranger, in his home. But he was outgoing and comfortable with his siblings and cousins on the playground. Later I found a buried note in the records about ear infections and asked about it. Fast-forward two months; after an ear/nose/throat and audiology consult, the child had ear tubes placed to drain the accumulated fluid behind his eardrums. He immediately began speaking meaningful words and his head-banging decreased by 90%; Nobody is worried anymore about him; he is progressing beautifully and is on track to start preschool at age 3.
That child had painful, unremitting ear infections that interfered with his hearing and language development, and caused him to bang his head in an effort to deal with the pain; His “lost speech” was a result of his shyness with the new speech therapist, and his hearing difficulty. He never truly “lost” any speech; he just was too shy to use his words with a new stranger, the speech therapist! And he was diagnosed with autism, and that diagnosis is “counted” in the statistics of the increasing “epidemic”.
I’m not arguing with the possibility that the actual incidence of autism is increasing. But I am not 100% convinced that that is taking place. And I’m worried about the panic and alarm caused unnecessarily to parents.
I am worried that there are several other distinct disorders being thrown together inappropriately with autism. Children with these disorders deserve to have them studied and understood uniquely, and not just lumped together with other disorders. In particular, there is a large group of children with sensory and motor problems; for example, a baby born with difficulty in tracking her vision. She cannot control her eyes properly so she cannot make eye contact with her parents. She does not learn to communicate well because she cannot make her eyes look where she wants them to go. Her parents think she does not “want” to look at them to communicate. These days, when clinicians hear that a baby does not make eye contact, they immediately think “autism”. But in this case, it is primarily a visual problem – one that, if corrected, will completely eliminate all her delays and symptoms.
Check out the following illustration I found online…(if anyone knows the source, please email me! I have been trying to locate the author but cannot find any information.)
Figure 2. At the age of four months this baby girl turned her head away when an adult tried to interact with her. This was interpreted as a sign of infantile autism. Since two of the older three siblings had esotropia, the infant was referred for an examination. She had normal looking eyes, a refractive error of +1.0 I both eyes and no accommodation to accommodative targets. Therefore +4.0 lenses were placed in front of her eyes to give her a clear image on the retinas. The effect was immediate, the baby looked surprised and a few seconds later showed a normal social smile for the first time.
One thing that health-care professionals seem to agree on is the fact that “Autism” is really a general term for many different disorders, each with different causes and outcomes. We need to work harder at understanding all of the unique disorders that are now being lumped together under one umbrella.
A Word About Vaccines
People are desperate to find a cause for autism. Childhood vaccines protect children from some of the most horrible, deadly, disfiguring, dangerous illnesses that routinely used to kill thousands. Are there dangers with vaccines? Of course. As for all medical treatments, you must weigh the potential risks with the potential benefits. But this problem has been studied extensively by gold-ribbon teams worldwide. Their findings? Vaccines do not cause autism. Not even the older vaccines with thimerosol, a type of mercury. Mercury poisoning by itself does not cause autism either. My kids have all their vaccinations. I have relatives who are survivors of diphtheria, polio and other horrendous illnesses. They don’t want me to lose sight of the misery (and death) that these illnesses inflict. And honestly, when other families choose not to immunize their children, they put the safety of others at risk; especially babies who are too young to have their full complement of vaccines, and other children and adults with compromised immune function. Please do not be misguided by the misinformation out there on vaccines. If you have any questions, please review them carefully with your pediatrician, who will probably agree with what I am saying.
True Autism Symptoms
Now, what does make me worry about autism in a child? Here are the main things I look for when evaluating a baby or toddler. (Remember: each child needs to be seen and thoroughly evaluated in person, preferably in your home, by an experienced professional.) These are some things that should trigger an evaluation, often to simultaneously include the evaluation of developmental psychology, vision, hearing, genetics, neurology, and occupational therapy/physical therapy specialists.
* No eye contact after four-to-five months of age;
* Inability to comprehend any language by 12 months (comprehension of language is far more important than spoken language or speech);
* Lack of gesturing (including pointing) by 18 months;
* Not turning to parents for emotional support/reassurance;
* Exclusively preferring objects to people at any age;
* Lack of imaginative play (make-believe/pretend games) by 18-24 months
There are many other possible, "lesser" symptoms, such as lining up objects compulsively, not responding to the child’s name being called, frequent tantrums, making “strange” sounds, and the apparent “loss” of speech. Often, these symptoms are problems, but are better explained by other diagnoses, such as the visual/motor example above, family stresses and problems, or even complex genetic disorders. And sometimes, these “problems” are simply normal expressions of toddlerhood!
So the bottom line is this: if there are any concerns, get an evaluation for your child sooner, rather than later, since time is of the essence. But make sure you get a comprehensive, thorough evaluation that takes all of the above into account. And if someone does use the word “autism”, don’t panic. These days the word means many different things to many different professionals, and often, the symptoms can be completely ameliorated by the right therapy.
Do you have stories to share about the diagnosis of your child's developmental delays? Please share!