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Is It Autism?
Autism diagnoses are skyrocketing, but are the incidences 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?
Yes.
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 ask 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.
Misdiagnosed?
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 and 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 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?
Thanks for an interesting read! I came here from Dad Gone Mad.
We (meaning us the parents, school, and doctor) had concerns our oldest son was somewhere on the autistic spectrum. Then I discovered some research on gifted children and how their behaviors are very similar to high-functioning autistic behaviors; something that is little talked of in the media.
TO HEATHER, QUEEN OF SHAKE SHAKE:
Thanks for checking out BabyShrink! You make a very good point: Some of the behaviors that people automatically think mean “autism” can actually be explained, at times, by completely different diagnoses, or even normal conditions. We can’t have a knee-jerk reaction to diagnosing autism-spectrum disorders.
And thanks for giving me a good place to start with a new article on autism!
Hello! What a great site! I was drawn to this particular link because I work with kids and adults with autism. What I think is interesting is that, 50 years ago, parents with a mentally disabled child often hid the child away institution. Most people have no idea how many adults are living with mental disabilities because they are either still institutionalized or living in group homes. And the majority of the adults who were institutionalized back then were not diagnosed with autism, but mental retardation. I’ve often wondered whether my adult clients with mental retardation would have, if born in the last five years, been diagnosed with autism…
TO SHENLEY:
It’s amazing how much is being discovered all the time via brain imaging and other studies. I hope to further develop the “for BabyShrinks…Professional Links” section with tons of good info for those of us interested in learning more about the field…I find it difficult to find good info all in one place. Send me any links you think are good, and we’ll build a central site for us all! Thanks for your support and interest!
Do you think there’s any link between prematurity (33 weeks) or small birth weight with autism?
HI STEFANIE:
Are we talking in general, or for your specific children? Hard to say for sure. It does seem that there is a slight (and i said SLIGHT) increased risk for autism/autism spectrum disorders in babies born before 35 weeks. There are many other risk factors…..(low birth weight not really one of them by itself). Low APGAR scores (the overall health of the baby right after birth), parental serious mental illness (schizophrenia/other psychotic disorder) are some risk factors. That said,none of these risk factors in ANY WAY points to a “sure thing” for developmental delay, and there are so many other types of developmental delay that we should be looking for…..not only autism. When I evaluate for autism, I always ask things about the baby’s early life and relationship with parents, ability to make eye contact, lots of other things. It’s a complicated picture you really can’t predict from the front end.
BUT: are we talking about a Mom’s fears for her babies? Well, that’s a different thing altogether. We stay up late at night worrying about all those sorts of things, don’t we? (Me included!) Managing Moms’ fears and anxieties is a big topic that I would really like to tackle more on BabyShrink. Thanks for giving me a start on it. And keep posting your comments/questions, or email me, so we can continue the conversation….You’re not the only one with these questions, I promise you.
Now get some sleep! It’s late!
I truly enjoyed this post on autism. My son was dx’ed with PDD-NOS back in 8/07 by a neurologist who saw him for about 30-45 minutes at most. He has some signs (hand flapping and speech delay) - but, is affectionate, loving, imaginative, playful, wants to be with other children, funny, etc. He has made great strides with speech therapy - and we turned down several Child Study Team placements because none of them were appropriate. We are pursing private ABA training to address the hand flapping - and, through a real assessment in his nursery school and at home, know this is exactly what he needs.
What bothers me - and sounds soooo clearly in your post - is: 1) the professionals making the diagnosis NEVER see these kids at home. My DS hates doctors, which the neurologist took to be signs of an autism-spectrum disorder… But, my husband hated doctors at that age - actually, he was worse! That, I believe, is just a personality trait.
2) No one listens the facts of things other family members have done growing up. My DS toe-walks sometimes - but, so did his grandmother, father, cousins, etc. When do personality traits end and “signs” of autism begin?
3) My son is “quirky” with his hand flapping. Don’t we all have some quirks that make us an individual?
4) I strongly feel vaccines do not cause autism - my DS displayed hand flapping well before the MMR in question. It is all the matter of timing - you begin to see the signs of autism right around the time children start getting vaccines.
Thank you again for your post…
TINA:
Thank you so much for your comment. I must say it’s gratifying; I expected some controversy over the article, since I come out so strongly on some of the issues. But I do feel I must present the information as I see it. (Actually I have been flamed over the article already, but only in private. I actually welcome any serious discussion of the article via these comments! Readers are welcome to disagree with me, as long as we all stay civil!)
I am SO upset about hearing that your son, and many many others, are diagnosed “on the spectrum” after such a brief evaluation. It truly is harmful. And show me a 2-year-old who LIKES to “perform” for a doctor, much less an unknown one. Come on! It’s just not real to think a toddler will handle that kind of situation at his best.
Now in your case, I do hope there is a good pediatric OT (occupational therapist) on the case? Many, many kids with hand-flapping and other “self-stimulating” behaviors actually have sensory issues, totally separate from any ASD. A good OT with expertise in sensory issues is an invaluable asset in cases like these.
Let us know how it goes, and thanks again!
We do not have an OT because we know for a fact he has no sensory issues at all. The CST had recommended OT/PT for very minor things (like, not being able to use scissors - but, qiute frankly, at 3 1/2 years, does he really need to know how to use scissors???) - but, he was only about 3 months behind at the time because of “proximity” issues (i.e., not being exposed to the task) and it was recommended to load the IEP.
He is now above his age level for speech - and his therapists push him, which he is up for the challenge always. All that is left is helping to squash the hand flapping, which he already tries to do on his own. Hence, our push for the ABA therapy…and trying to get our insurance to cover it (our insurance company still considers ABA “experimental,” so we are expecting to have to appeal already and are working on that now before the denial comes through.
Thanks for your comments on my DS’ case. His neurologist did tell us he would quickly fall off the spectrum because he has so many other things going for him, which is great. But, in the end, my husband’s cousin had many of the same traits at the same age as our DS…and, he shows no issues now at age 27. He is a successful photographer with tons of friends, a girlfriend and totally adjusted. His issues he grew out of on his own…and I strongly feel DS will be the same way.
HI TINA:
One school of thought is that, in this age, IF there’s no serious PDD/sensory issues, the hand-flapping might just be developmental and a personality quirk, and giving it so much attantion via ABA might actually reinforce it.
Now: I am not evaluating your son, so I have no basis for saying that, but I thought I’d pass along the idea for you to consider in case it MIGHT apply.
Good luck and let us know!
Dear BabyShrink,
I am a student at Hunter college in New York, and I am writing a paper analyzing the effects of IDEA and other federal policy on the Autism epidemic. I would very much like to use a quote from this article in that paper. All or in part:
“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.”
I would greatly appreciate your permission to quote you on this, and if possible with your full name for legitimacy. Also, if you have any further information on the impact IDEA has had on you or others in your profession as far as diagnosing autism, I would love to hear it!
Please email me in response.
Thank you!
Thanks much for this post. I’m currently pregnant (almost end of first trimester), and as an older mom-to-be, I’m always looking for information about possible issues that could appear. Do you know of any coincidence between autism and maternal age?
HI CHARLOTTE:
Congrats!
The age factors of which I am aware have more to do with PATERNAL age.
I understand you might worry, and you certainly want to be prepared as early as possible, if needed. But there’s really nothing you can do at this point. I would rather you focus on enjoying this very exciting time, and taking advantage of whatever energy you do have to do things you won’t be able to do as easily, once the baby arrives.
We did infertility treatments for our first child. We asked the doctor, “What are our chances for having a baby from this treatment?” His answer always stuck with me. “I can tell you the overall percentage chance you have, based on the whole population. But that doesn’t really matter. For you, your chances are either 100%…or 0%. Because either you ARE pregnant…or you’re NOT. There’s no “20 or 50 or 75% pregnant.”
The same really applies to you; and everyone who is expecting a child (even via adoption). There’s no way we can control the genetics or the complexities related to autism, or really anything else with how our child is born. And while we want to know our “chances”, that would not impact the outcome in any way, really.
So I wish I had a crystal ball for you, and I certainly appreciate your question! Just this weekend, our baby’s eye puffed up like he had been slugged. Was it a mosquito bite? Or was it some horrible infection? Even the doctor can’t know for sure. It’s so hard to NOT KNOW what is…or might be…wrong with your child. And guessing about probablities is an effort in futility, ultimately.
Welcome to the adventure of parenting…the challenges like this just keep on coming!
such a great blog some how i found you looking for things on our sons birth defect esophageal atreia, i wish you the bes
Hi BabyShrink - I’m GirlShrink!
This was a very interesting article and I enjoyed it, but I must say as a clinician who has worked with children and families on the spectrum and as a mother 3 (one of which is on the spectrum) - I think that too much emphasis has been put on the name or the labels of autism spectrum disorder.
Parents want to know what is wrong with their child. Clinicians are pressured to tell them something. But at the end of the day, I don’t care what you call it. If you have a child who is exhibiting several typical DSM IV symptoms of autism spectrum disorder, call it what you want, but start early intervention as soon as possible.
My daughter has a language and communication disability and was given the diagnosis of PDD-NOS so that she would receive services through the “system” for as long as she needed. Those services since the age of 2 are what I feel are responsible for her success today as a 2nd grade student flourishing academically and socially.
I think rather than telling parents that it may be something else other than “autism”, I think the bigger message may be — let’s not get caught up in what name to give it period. Let’s just start interventions to help children with repetitive behaviors, stimming, sensory integration issues, abstract play, etc.
When I let go of demanding clinicians to tell me what exactly was going on, and I just starting focusing on helping her function and really feel better in the world — I saw an amazing thing happen — improvement!