Randolph, Mass. — Public awareness and understanding of autism spectrum disorder have increased dramatically in the 30 years since the film “Rain Man.” Today, most people know or will meet someone on the spectrum: one in every 59 children is diagnosed with autism. In 2000, it was one in 150.
“There is less stigma and greater understanding about autism,” says Cynthia Anderson, Ph.D., BCBA-D, Director of May Institute’s National Autism Center. “Even so, and despite these advancements, common misperceptions persist.”
To reduce confusion, top clinical experts at May Institute offered key takeaways from the latest research and clinical findings:
1. Children and adults with autism are as varied, unique, and diverse as people without autism. If you’ve met one person with autism, you’ve met one person with autism!
2. Autism is NOT caused by vaccines. Autism is believed to have a genetic basis, although no specific gene has been directly linked to the disorder.
3. Autism is not caused by bad parenting. With early diagnosis and appropriate supports, individuals can be social and independent, interact with others, and contribute to communities and the workforce.
4. Effective treatment needs to be tailored to the individual, addressing the deficits and excesses which most limit a person’s ability to get along in the world. These could include difficulties communicating or interacting with others, the presence of challenging behavior or repetitive behaviors, and a restricted range of interests.
5. While no cure exists, autism can be diagnosed and treated. Individuals with autism can lead meaningful, happy, and enriched lives, just like everyone else.
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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 the obsessive thoughts. Some common examples of these behaviors are hand-washing or other hygiene activities. For example, a child may wash her hands to prevent contamination or contact with germs. There is often a fear that failing to wash hands will result in illness.
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 hoarding, ordering, and self-injurious behaviors (McDougle, Kresch, Goodman, & Naylor, 1995).
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.
As a parent, you are the expert on your child. You know his or her likes and dislikes, strengths and needs, struggles and successes. You have learned — through experience, trial and error, and instinct — what helps your child feel calm, happy, and secure.
You are also your child’s strongest advocate in the goal of developing the skills he or she needs to live an enjoyable, successful life. You should feel comfortable having a strong voice in decisions concerning your child’s treatment. And the values your family holds can and should influence this process.
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The term “family values” takes on a specific meaning in the context of raising a child with ASD. Think of a family’s values as the unique preferences or concerns that individuals with ASD — and/or their family members — bring to the discussion about treatment. Family values should have direct bearing as you select skills and behaviors to target, and as you identify appropriate treatments to help your child reach his or her potential and/or enhance the family experience.
For example, your family may value attending worship services together. If so, your goals for your child’s treatment could include learning to sit or kneel quietly in a church, temple, mosque, or other worship setting fora specified period of time, understanding and following the content of a religious service, or participating in various aspects of the service. Other families may value spending time outdoors together. For them, working on leisure activities such as hiking or playing kickball may become a focus of treatment.
Cultural Variables Family values and preferences are influenced by cultural variables. Therefore, treatment goals and strategies for your child should be congruent with your family’s cultural values. It’s important that your voice is heard when decisions are being made, and that members of your child’s treatment team understand your family’s cultural preferences.
Consider the following examples: Many young students with ASD do not make frequent eye contact like their peers do or, when they do, that eye contact is fleeting. Eye contact is often a treatment target because it is a socially important skill for most individuals in the larger culture of the United States. It is often one of the first skills taught in many research-supported treatment programs that focus on improving attending and responding to adult treatment providers. Yet, in some Native American and Asian American cultures, eye contact with adults is considered a sign of disrespect.
Reducing self-stimulation is also a frequent treatment goal for children with ASD. However, these behaviors are largely ignored by Navajo parents of children with disabilities. Navajo parents tend to focus more on the strengths of their children rather than behavioral excesses or deficits. In each of these cases, the values of the family may play a very important role in the decision to target these behaviors for change. If the child can make progress without targeting eye contact or self-stimulatory behaviors, there is no reason for these behaviors to be altered, especially given the cultural values and preferences of the family.
Family Structure The composition of your family may also influence your values and preferences about treatment for your child. For example, your child’s grandparents may take an active role in his or her care and well-being. It is not uncommon for parents to feel pressured by relatives to modify the intervention strategies used to help the child with ASD. Some extended family members may deny the fact that the child is on the autism spectrum, whereas others impose their views about child-rearing when the family is already experiencing distress. Regardless of the support or challenges offered by extended families, it may be helpful for you to seek out resources that support grandparent involvement.
Families raising a child with ASD along with typically developing siblings face a unique set of challenges. Some siblings do not understand why their brother or sister doesn’t play with them. Other siblings need to learn strategies for managing the stress when classmates make fun of the child with ASD. Older siblings may need help and guidance as they grapple with the possibility of having to be a lifelong protector for their sibling on the spectrum. As a result, you might seek out resources that provide sibling support. The structure of your family may influence your selection of specific treatment goals for your child on the spectrum or therapy for other family members.
Other Factors Other considerations that may influence your family values and preferences include work and career issues, financial factors, and available community resources. For example, your job requirements may impact the amount of time you have available to participate in your child’s treatment program. Or, as is the case in some two-parent households, one parent may choose to stay home to coordinate the various services that are required for the child with ASD. A mother or father may also make the decision to stay home because no childcare is available, or may become one of the primary out- of-school “therapists” for their child. Complicating matters still further, it’s not unusual for parents to have more than one child with some type of disability or educational need. In this case, the stress is increased as you work to ensure that each of your children receives sufficient support. The choice for one parent to stay home can be a double-edged sword. Although it resolves some issues, it may create others (such as limited financial resources).
Financial factors may influence a family’s ability to purchase prescribed medications, provide transportation to appointments, or buy materials to support a child’s skill development at home. Community factors such as access to trained professionals, support services for individuals with disabilities, and family support services must also be considered both in terms of the quality of services that are available and the costs to the family. It’s important to remember that these services may help the family function more effectively as a unit, and that the financial cost may be vastly outweighed by the gain in general well-being among family members but this is not necessarily the case.
Military families face a unique set of employment issues. For example, when military personnel are sent overseas or are on duty at an undisclosed location, the entire family is missing one parent. The child with ASD, his siblings, and the remaining parent are all left with more limited support under stressful conditions. In addition, because military families are often required to move frequently, the parent who remains behind may lack a well-established network of friends or extended family.
Given the many factors that may influence your current levels of stress, or your capacity to participate in certain treatments, your values and preferences may change over time. A treatment goal that would seem essential under different circumstances may suddenly get moved into an “important in the long run but not today” category. You should voice your concerns if and when your child’s needs and/or the needs of the family change. The professionals working with you may also voice their concerns. This dialogue is vitally important to ensure that critical goals are being addressed, and that the strategies used are both feasible and effective.
Providing families with a voice in the educational and treatment process is often called “family-centered care.” We know that active family involvement leads to better outcomes.