Is autism really on the rise?

Photo by Webb Chappell
Photo by Webb Chappell

By Ellen Hanson, PhD, Developmental Medicine Center

“Has autism increased or hasn’t it?” As a researcher and psychologist with a specialty in developmental disabilities and autism spectrum disorders (ASDs), this is a question I get all the time. I wish I had a short answer, but I don’t. On the other hand, if you have a few minutes, read on.

The question is a really important one. A study just came out in Pediatrics, saying that the prevalence of ASDs is now one in 91 U.S. children – and one in 58 boys. This is much higher than the most recently quoted rate of one in 150. And that is up from one in 1500 in the early 1990s.

That jump would scare anyone! But is it real?

This should be a “yes” or “no” question, right? But the first thing to remember is that, although we do our best, it can be really difficult for researchers to get good autism numbers. Previous studies looking at this issue have used differing criteria for deciding who has an ASD. Some studies try to use particular criteria to “make sure” that the individual has an ASD and not some other disorder – for example, requiring that the diagnosis come from a specialist, or that the patient displays certain symptoms. In contrast, the study in Pediatrics used parent or guardian reports and got a much higher rate of diagnosis. This isn’t necessarily because the parents were inaccurate, but rather that they could report a diagnosis or an observation made by any provider using any set of rules or criteria.

Another issue is that reporting of disorders can rise for reasons other than a true increase. For example, when there are treatments that work and are available, people are more likely to pursue getting a diagnosis. In the case of ASDs, when laws were enacted to ensure that young children had more access to services, there was an increase in diagnosis.

Yet another factor is increased public awareness. When you know that you have risk factors for a disorder, you are more likely to be evaluated. And as awareness increases, people tend to get diagnosed much earlier, adding to the pool of people who have the diagnosis at any given time.

After all this, you’re probably still saying, “So, do we know if ASDs have increased at all?” And truthfully, we just don’t have a definitive answer. Certainly there is an increase in prevalence, or the number of people diagnosed with an ASD at any given time. The incidence of ASDs, or the number of new cases over a certain time span, is less clear. But even when the reporting issues above are taken into account, new cases do appear to be increasing.

Why this is so remains a big mystery. Children’s is one of the institutions trying to find answers – using very stringent, rigorous methods for diagnosing autism and analyzing the data so we can look for causes, improved diagnostic techniques, better treatments and ultimately cures. If you have a child with autism, we need your help! Consider enrolling in our study, which looks at the genetics of autism, or other studies taking place at the hospital (for more information, email Anna Ehler or call 617-355-3076). You’ll get a report on your child and you’ll be helping researchers make new discoveries. Whether it’s one in 150 or one in 91, ASDs are a huge public health problem, and we need answers quickly.

15 thoughts on “Is autism really on the rise?

  1. Thanks, Ellen,

    That was an excellent answer to a tough question. Everyone wants a yes or no but there are too many variables in the reporting of information as you said.
    As a speech pathologist, the main point we need to take away is to increase our funding for research and be more diligent in diagnosing children with ASD at an early age for the best chance at effective early intervention.

    Sherry Artemenko

  2. Ellen,

    This is truly one of the most inane and ridiculous posts ever written by a doctor at a suppsoed center for autism excellence.

    Do you guys get out in the community at all? Have you been to a school? Have you talked with a grade school teacher? Have you visited the board of of ed? My sister is a special ed grade school teacher and she and her peers are truly overwhelmed by the sheer numbers of ASD kids coming into the system. They have never seen anything like this. Whole schools that once served children w/ learning disabilities, children with Downs and CP are now almost exclusively teaching autistic kids. The Board of eds are constantly in court over inadequate IEPs. Parents are spending money they cannot afford in order to sue for their child’s right to an education.

    I am not talking about mildly affected kids either, but moderate to severe ASD cases that cannot be served with an aide in a classroom. Divorces, bankruptcies, shattered families in the ASD community are growing in tandem to the exponetial increase in cases.

    My child developed beautifully for 2 yrs. Speaking in full sentences, conversational, loving, affectionate and within months he lost every skill and EVERY word he ever had. Christian has also been chronically ill ever since contracting autism. Our son has been in and out of more hospitals than I care to remeber. And guess what else? There is NO history of autism in our family- none. Are you seriously saying that these children were just “missed” a decade ago?

    It is time for Children’s Hospital and other institutions that take enormous amounts of $ from autism advocacy orgs to stop undermining our children. Wake up- autism IS increasing. Now try to listen to our families and do something about it rather than treating this whole body disease as an academic excercise in heritable brain disorders.

    Shame on you for calling yourself a children’s hospital.

  3. Our son has been in special ed for 4 years, although not severe. He has a diagnosis of PDD because nobody can figure out what is truly going on. We hired a lawyer to get more services from the school, and the lawyer told us the only way to get more services was to get the ASD diagnosis. He told us he had professionals who could “help.” We fired the lawyer because we don’t operate that way.

    In the school most of our son’s special ed peers have an ASD diagnosis. Those who do not, get very little services. There are ones that have it who are higher functioning that our son, and seem mostly typical except for sensory issues and speech delay. One parent told us they paid a psychologist $2,000 for the diagnosis.

    People ARE paying for this diagnosis in order to get more services. It is rampant in our district, probably because the income levels can afford it. That does not mean true cases of ASD do not exist, but I believe very strongly that this sharp increase is a false marker. I am seeing this with my own eyes…

  4. Ms. Wright,
    Thanks to you and everyone else for responding with their opinions to my post. Autism is painful for all of us involved with it, both personally and professionally, and we both agree that there certainly is an increase in cases of ASDs and that this needs to be addressed. I also see it in our own clinics and in communities. Our studies are hoping to find all of the reasons for the increase. Research at Children’s Hospital is looking at possible environmental as well as genetic causes for this disorder, since it seems clear that not every child has autism for the same reasons. As discoveries are made, we are hoping they will lead us to ways to help diagnose, treat and cure this terrible disease. Like you, we want to do something about autism, but we won’t know what to do until we have a better understanding of its causes. To do that, we need large numbers of people to make sure we get solid results. We wish we could promise families that we will get answers overnight, or even in the next five years. We’re grateful to the many families who have chosen to enroll in our studies to try to find those answers. We promise that we will continue working as hard as we can until we get answers for our children.
    Ellen Hanson

  5. I grew up in the 1970’s. Kids who were severely mentally impaired, most of whom would now be considered on the autistic spectrum, were not in mainstream schools at all. They went to specialized schools, or were institutionalized. Now they are by and large in the public schools, instead of being out of sight and out of mind. Does this mean their population is larger, or just more visible? Downs syndrome has declined most likely because people can abort fetuses with Downs due to prenatal testing. Improved care of premature infants has decreased the number of kids you see with CP, and many of the most severe CP kids still require special schools. Many of the kids now labeled as being ‘on the spectrum’ would have just been considered quirky, troublesome, shy, or otherwise just an outlying variation on normal. Given the number of adults who went through most of their lives before figuring out that they had Aspergers, I don’t think it is too hard to imagine that ASDs were there, but just not seen. We definitely don’t want to go back to the days of pushing people to the side if they are not neurotypical. But at the same time, just because more children are getting services it doesn’t mean that a larger percentage of the population needs services compared to before.

  6. yes autism is on the rise, skyrocketing in fact, and to the idea that these kids have always been out there. Not this many. I grew up in the 70’s too and I knew noone with with a child hidden away in an institution. If that was the case, institutions would be brimming.

    In a neighborhood of 60 + kids I knew noone with kids who had these kinds of developmental challenges (severe learning impairments, social delays, behavioral issues). Today there are three on my street, my son included. All boys.

    There are six of us at my office with kids on the spectrum. Instead of talking about how our kids are doing in sports we talk about their IEPs. I can now spot an ASD kid because I know the signs. I’ve seen many.

    Autism is MUCH more prevalant today even with so called “improved diagnosis”.

    Our kids have a host of medical issues that are not geting properly tested for or treated including: GI issues, seizures, dysbiosis, immune dysfunction, hormone imbalances, brain inflammation, viruses, bacterial overgrowth, sensory sensitivities, allergies.

    My son is a patient at Children’s neurology dept. His genetics screening was done there and it came back “normal” per the report. So something else is causing these behavors. Immune dysfunction maybe?

    Childrens Hospital it would be really helpful if your doctors and researchers investigated underlying causes particularly the immune systems of these kids and did full medical evaluations. Evaluate their GI systems, assess for immune dysfunction, brain inflammation, hormone imbalances, bacteria and viruses.

    Perhaps once the underying medical causes are identified and treated then we’ll see an improvement in behaviors and maybe a reduction instead of an increase in the number of kids with the diagnosis.

  7. Wow. One fine day, a local state representative…or even a future President of the United States will have a child/and or Grandchild effected by poison (autism). There will be no more hiding behind the normalcy of the lives of “Brain mapping” scientist, or anyone else wasting families incomes on nothingness. And it being genetic?? My husband and I were college athletes with an immensely healthy family tree. Our son went from normal to having ASD…and now (with the help of our DAN! Doc) almost back to normal…and it’s genetic? This generation of parents will NEVER be fooled again. We will only get louder…and LOUDer…AND LOUDER until every parent knows just how evil America is at laughing at disease and drooling over money. Watching our son in pain every single day is like watching a murder victim attempt to stay alive.
    It is fair to say that the writer of this article has some sort of mental disorder – oh, denial.

  8. To BMS- I would like to ask you then, where are these autistic adults now? Someone please tell me where these million or so of the population that just didn’t get diagnosed when they were younger are hiding out! Sorry, but I can only remember no more than two “special needs” kids while growing up (and they were nothing like MY son!)

    To Sarah, I second all of the above…beautifully written, and hopefully your comments will be taken seriously. I cannot believe Children’s is dumping another 4.5 million into genetic research! Hasn’t this avenue been exhausted (many times in fact)? Unless of course someone would like to study the percent of children who just could not handle receiving around 33 or so vaccines, most containing large amounts of mercury (from around 1990-2005), and then who became very sick, and hence very autistic, post MMR. I am not hopeful Children’s would ever step up to the plate with this one, seeing they don’t even think there is really a problem- or epidemic- to begin with.

  9. Janet,

    No doubt Childrens receives generous research grants from corporate sources so they play this game of denial and sadly it’s the children who lose. I’m not sure how bad it will have to get for them to finally take notice. 1 in 10 maybe?

    Using the analogy of the Holocaust, 6 million Jews had to die in Germany before people finally stood up and said “this is wrong, we have to take action”. People knew about this for years but the denial likely prevented anything from being done and look at the toll.

    I hope one day soon members of the medical community will stand up for the sake of the children. It may not be popular with the establishment but morally it’s right thing to do. These are our kids. They’re our future!

  10. Autism is associated with many different medical conditions. The “final common pathway” in the brain affected by all etiologies must be found that can account for the distinctive developmental language disorder. One of the conditions associated with autism is respiratory depression at birth. Clamping the umbilical cord immediately after birth (even before the first breath) became the “standard of care” in obstetrics beginning in the 1980’s, which was the beginning of the increase in autism prevalence. Ischemic impairment within the auditory pathway of the midbrain is the greatest danger of allowing a lapse in the transfer of respiration from placenta to lungs to occur. I have posted more at
    http://www.conradsimon.org/AutismPrevalence.html
    I hope you will look into this in your research investigations.

  11. Sarah,

    At least DAN! doctors are helping our “kids”. You’re right- they are our future! We must be their strongest advocates, especially those who do not have a voice.

    Nicole- I have followed your work (also George Malcolm Morley’s) and have brought the philosophy of delayed cord clamping to my ob/gyn. In our effort to return our bodies, and our children’s, to a healthier state, we remain as close to the way “nature” intended as possible. It appears to be working, as our seven year has only been to the doctor’s ONCE. Only because he needed a physical for school!

    Keep up the good work, fight the good fight! Our babies are so precious and they are the future generation!

  12. With all due respect, ‘nature’ used to kill millions of people on a regular basis from plague and smallpox.

  13. Dr. Hanson,

    If you and your colleagues at CHB really want to get to the bottom autism crisis and help our kids then look beyond the behaviors and run blood tests to determine how their immune systems are functioning. This information could open the doors to many new and effective treatment paths. Behaviors are merely a symptom of an organic dysfunction. These kids are in medical distress. They can’t detoxify because their immune systems are not functioning properly. The toxins build up in the bodies an they spiral downward (regress). It is not enough to “treat” the behaviors. If you treat the underying cause, restore the health of the immune system then you should see a reduction in behaviors. Please do the blood tests!

    Here are some suggested tests to run:

    The Most Important Tests:

    CBC
    Sedimentation Rate
    CMV IGG / IGM (if IGG Positive)
    ANA Titer
    EBV IGG / IGM (if IGG Positive)
    Hypothyroid Panel
    Ferritin Level

    Immune Panel (to include):
    Total & Percent CD4
    Total & Percent CD8
    Total & Percent CD16 / CD56
    Total & Percent CD19
    Lead Level
    Vitamin B-12 Level
    Folic Acid
    Comprehensive Metabolic Panel
    SGOT / SGPT
    Lipid Panel
    Candida Titer (IGG, IGA, IGM (Immunodiagnostic Labs (800-888-1113)
    HHV6 Titer (Immunodistic Labs)
    Quantatative Immunoglobulins (IGG, IGA, IGM, IGE)
    Gliadin Antibodies
    Alpha Interferon
    Allergy Food Screen (95 foods) (Meridian Valley Lab (253-859-8700)

    Optional / Useful

    Thyroid Antibodies
    Herpes I & II IGG / IGM
    Rubella IGG Titer
    Coxsakie Virus A & B

    Useful Links:

    http://www.nids.net/labtests.htm

    http://www.neuroimmunedr.com/links.html

  14. Sarah, You are on completely the right track. I hope they listen to you. I have seen autistic children totally cured, and in fact brilliant and fun, after treatment to regulate the immune reaction to food and inhalents. The method used, by Dr. Kenneth Krischer, MD, PhD, was the “Provocation and Neutralization” method. Sadly Dr. Krischer has died, but his book is forthcoming.

    What you are suggesting is a different way to do the same, I think

Comments are closed.