Randolph, Mass. – As we mark World Autism Awareness Day 2020, a new estimate released by the Centers for Disease Control and Prevention (CDC) reveals that one in 54 U.S. children now has an autism spectrum disorder (ASD); two years ago, that figure was one in 59.
The updated numbers, published in the CDC’s Morbidity and Mortality Weekly Report, are based on data collected in 2016 from health and educational records of 8-year-olds living in 11 communities across America. Boys continue to be four times more likely to be diagnosed with ASD than girls, which makes the prevalence in boys one in 37, while the prevalence in girls is one in 151.
The sheer volume these data represent – at least one million U.S. boys and girls have autism, not to mention the rapidly growing number of adults with autism – is staggering.
Important findings in the recent report include the fact that more children are being evaluated for ASD, and at younger ages. Additionally, for the first time, the prevalence in black and white children is the same. This suggests that we are doing a better job across the country identifying children in some historically under-reached communities.
However, the report also noted that, “Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children.” [Read the report.]
The call to action is clear. We must redouble our efforts to educate families and practitioners about autism’s early warning signs and diagnose children at a younger age. The earlier a child is diagnosed, the better the long-term outcome. Research shows that early diagnosis and intervention during the first years of a child’s life can significantly impact his or her long-term prognosis, particularly in the areas of language and social behavior.
We must also make information about the most effective evidence-based treatment for autism universally available, and create easier, faster, and more affordable access to that treatment for every child and family that needs it, across all communities, ethnicities, and socio-economic groups.
The National Autism Center at May Institute continues to offer free, downloadable resources about autism treatments at www.nationalautismcenter.org, including information about early warning signs. “Although we, like everyone else in the U.S., are dealing with the incredible challenges that have accompanied the COVID-19 crisis,” says May Institute President and CEO Lauren C. Solotar, Ph.D., ABPP, “we believe that promoting awareness about autism is as important as ever. It is my hope that this pandemic will make us all more aware of and empathetic toward not only the needs of individuals with autism, but of the needs of all of the most vulnerable individuals in our community and around the world.”
[Boston Globe, 5/19/19]
Re “Contain measles outbreak with these two simple steps” (Editorial, May 8, 2019): Families make the choice not to vaccinate their children for various reasons. Among them is the long-held fear that the measles, mumps, and rubella vaccine may cause autism. This belief is based on a widely discredited study published in the medical journal Lancet in 1998, which resulted in researcher Andrew Wakefield losing his medical license.
Vaccinations do not cause autism.
Even as the number of unvaccinated children increases, autism diagnosis rates continue to rise. The fact is, depriving a child of the MMR vaccine will not help him or her avoid a diagnosis of autism, but it could place that child’s health at significant risk.
As we continue to communicate the critical importance of early diagnosis and intervention for young children with autism, we have a responsibility to push back against the misinformation that the MMR vaccine can cause autism.
Cynthia Anderson, Ph.D., BCBA-D
Senior Vice President of Applied Behavior Analysis for May Institute
and Director of May Institute’s National Autism Center
Randolph, Mass.
Click here to read full article
WBZ-TV’s Nick Giovanni sits down with Senior V.P. of the May Institute Dr. Cynthia Anderson to discuss how they help adults with autism.
Parental involvement is important, but your child should also have a voice in his educational, medical, and treatment planning and implementation. As long as your child can meaningfully participate in any way, he should be involved in IEP meetings, discussions with therapists and physicians, and selection of additional programs and supports.
Not all individuals on the autism spectrum are capable of actively making decisions about their treatment, but there is a danger in assuming all children with ASD are unable to help identify treatment strategies and targets. Many children with ASD may have strong preferences about which interventions they do or don’t prefer. Ensuring individuals with ASD can participate in the treatment process by sharing their values and preferences provides them with opportunities for developing social skills, independence, and self-advocacy skills.
You should frequently ask your child about her feelings or thoughts regarding treatment, medication, and other activities. You can use the Autism Spectrum Disorders–Student Participation Questionnaire to gather information from older children (or those with strong communication skills) regarding their treatment needs and goals (link to form). If your child is not able to answer such questions directly, pay attention to her behaviors during treatment; they may provide a clue about her values and preferences.
But remember, therapy is hard. Most of us would prefer not to do the hard work that’s required to make real progress. Sometimes, children with ASD only know that the current situation is difficult for them. Your child may actually seem happier when using a treatment that does not have sufficient research support. Make sure you assess not only your child’s expressions, but also her progress so you can make the best decisions. There may be times where she prefers not to receive a treatment but, after discussion with the therapist and your evaluation of the data, you determine that the hard work will be worth it for your child in the long run.
While there is much more information available about autism spectrum disorder (ASD) than ever before, it can still be a complicated and confusing task to obtain a diagnosis for your child. There is information for parents and pediatricians about early warning signs that indicate the need for further diagnosis. However, depending on a family’s access to a qualified diagnostician, there may be significant differences in how quickly a child obtains a correct diagnosis. This is further complicated by differential diagnoses and comorbid conditions. To help guide you in this process, we provide the following background information about disorders that are similar to ASD (differential diagnoses) and disorders that may occur along with ASD (comorbid conditions).
Differential Diagnoses
Some disorders share common characteristics with ASD. For example, children with ASD can have behavioral concerns, attention and concentration difficulties, mood dysregulation, and medical involvement. All of these symptoms alter with age. It’s not easy to diagnose these children or adolescents because these symptoms may or may not be a result of the ASD. An ASD diagnosis must be differentiated from other disorders that are similar to ASD. When psychologists or psychiatrists make these decisions, it’s called a differential diagnosis.
Comorbid Diagnoses
Some disorders may occur simultaneously with ASD. In these cases, it’s appropriate for children to be diagnosed with ASD and with an additional disorder. When psychologists or psychiatrists make these decisions, the additional diagnosis is called a comorbid condition. The exact prevalence of comorbid conditions in ASD is currently unknown, but studies have estimated from 11 to 72 percent of individuals with ASD have at least one comorbid psychiatric disorder.
To confuse the matter further, some disorders may appear as a differential diagnosis for one child and as a comorbid condition in another child.
For example, consider a young boy who has the following challenges at school:
Has social problems with other students
Seems to violate social rules with adults, like talking when the teacher is talking
Tends to look away from tasks that are presented to him
Throws tantrums when things do not seem to go his way
Misunderstands comments made by others
Can’t seem to sit still
FREQUENTLY OCCURRING DIAGNOSES AND CONDITIONS
Anxiety
Children with ASD may show significant symptoms of anxiety. Here are some facts about anxiety and ASD:
Eleven to 84 percent of individuals with ASD may also show symptoms of anxiety.
People with ASD may experience symptoms of anxiety regardless of their cognitive functioning.
Children with autism are more likely to show problem behaviors related to anxiety than their typically developing peers.
The symptoms of anxiety are similar in children with ASD (from preschool through young adulthood) and their typically developing peers. In both groups, younger children are more likely to have specific phobias, and older children/adolescents are more likely to have obsessive-compulsive disorder and social phobias.
Because of social difficulties and a potential increased awareness that they’re “different,” many children with ASD have a difficult time with the transition from childhood to adolescence. This could lead to more problems with anxiety, depression, and possibly hostility towards others.
Obsessive-Compulsive Disorder (OCD)
OCD is a disorder that involves obsessive thoughts about a particular subject, activity, or object. A person with OCD engages in compulsive behaviors to eliminate the anxiety caused by
When trying to differentiate between symptoms of OCD and ASD in children, there are some important facts to consider:
Children with OCD have more cleaning, checking, and counting behaviors, while children with ASD are more likely to have
In both OCD and ASD, repeatedly performing behaviors or rituals may help reduce anxiety. For someone with OCD, the anxiety may be related to what will happen if he can’t engage in the behavior (for example, he may become ill or someone will be hurt). For someone with ASD, engaging in these same behaviors may be comforting, calming, or just interesting.
Children with ASD are not always able to accurately self-report whether or not feelings of distress accompany the obsessive-compulsive behaviors. This is a key component in the diagnosis of OCD. It’s often this distress that can help differentiate between a child engaged in self-stimulatory or stereotypic (repetitive) behaviors, and a child engaging in ritualized behaviors to relieve anxiety or distress from obsessive thoughts.
Psychotic Disorder
In the past, individuals diagnosed with a psychotic disorder. As more information and better assessment methods have become available, there have been far fewer misdiagnoses. Unfortunately, some children and adolescents still do receive an incorrect diagnosis of psychotic disorder when an ASD diagnosis would be more appropriate. When a psychotic disorder is suspected, it’s important to consult a professional experienced in working with psychotic disorders and ASD, and who also has expertise with differential diagnosis.
Here are some of the difficulties with making this differential diagnosis:
Children with ASD may engage in behaviors that appear strange or psychotic in nature. For example, a child may replay scenes and/or monologues from preferred television programs over and over. He may insist that he is the character in the program, or have difficulty communicating how he can tell the difference between fantasy and reality. He may get upset and engage in inappropriate behaviors such as yelling or aggression if you question him about his beliefs. This response is more likely tied to one of the primary characteristics of ASD— fixated interests and a desire for sameness. But the focus on fantasy characters and an insistence that these beliefs (which are not grounded in reality) are accurate often result in a diagnosis of a psychotic disorder by diagnosticians less familiar with ASD.
Children with ASD may also report hearing voices. Although this could be a psychotic symptom, this should not be assumed. A child with ASD may be referring to hearing his own thoughts, hearing things people have said to him in the past, or hearing the voice of someone who is in the next room.
Children with ASD have been known to talk to themselves or mumble under their breath. This behavior may reduce anxiety or may be a way to comfort themselves in unfamiliar surroundings or anxiety-producing situations.