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Autism Frequently Asked Questions
"I liked Wrap because, those people who came to my house, they trusted me, and I trusted them. The Wrap people helped me talk. I had Autism. I used to be 1 in 166. But now I'm 1 in 10,000."
-- Erich Z., Student
1. What is autism?
All children with autism spectrum disorders (ASD) demonstrate deficits in social interaction, verbal and nonverbal communication, and repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look. The thinking and learning abilities of people with ASD can vary - from gifted to severely challenged. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD. ASD begin before the age of 3 and lasts throughout a person's life. It occurs in all racial, ethnic, and socioeconomic groups and is four times more likely to occur in boys than girls.
2. What causes autism?
It is suspected that there may be multiple causes for ASD due to a complex interaction of genetic and environmental factors. Family studies have shed the most light on the genetic contribution to autism. Studies of twins have shown that in identical twins there is about a 75% rate of both twins having autism, while in non-identical twins this occurs about 3% of the time. The inheritance pattern is complex and suggests that a number of genes are involved.
For the majority of people with ASD, the cause is not known; however, ASD tend to occur more frequently than expected among individuals who have certain other medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism, specifically, the prescription drug thalidomide.
Source: CDC
3. What are the signs of autism?
As the name "autism spectrum disorder" says, ASD cover a wide range of behaviors and abilities. People who have ASD, like all people, differ greatly in the way they act and what they can do. No two people with ASD will have the same symptoms. A symptom might be mild in one person and severe in another person. The following are some examples of the types of problems and behaviors a child or adult with an ASD might have:
Social skills: People with ASD might not interact with others the way most people do, or they might not be interested in other people at all. People with ASD might not make eye contact and might just want to be alone. They might have trouble understanding other people's feelings or talking about their own feelings. Children with ASD might not like to be held or cuddled, or might cuddle only when they want to. Some people with ASD might not seem to notice when other people try to talk to them. Others might be very interested in people, but not know how to talk, play, or relate to them.
Speech, language, and communication: About 40% of children with ASDs do not talk at all. Others have echolalia, which is when they repeat back something that was said to them. The repeated words might be said right away or at a later time. For example, if you ask someone with an ASD, "Do you want some juice?" he or she will repeat "Do you want some juice?" instead of answering your question. Or a person might repeat a television ad heard sometime in the past. People with ASD might not understand gestures such as waving goodbye. They might say "I" when they mean "you", or vice versa. Their voices might sound flat and it might seem like they cannot control how loudly or softly they talk. People with ASD might stand too close to the people they are talking to, or might stick with one topic of conversation for too long. Some people with ASD can speak well and know a lot of words, but have a hard time listening to what other people say. They might talk a lot about something they really like, rather than have a back-and-forth conversation with someone.
Repeated behaviors and routines: People with ASD might repeat actions over and over again. They might want to have routines where things stay the same so they know what to expect. They might have trouble if family routines change. For example, if a child is used to washing his or her face before dressing for bed, he or she might become very upset if asked to change the order and dress first and then wash.
Children with ASD develop differently from other children. Children without ASD develop at about the same rate in areas of development such as motor, language, cognitive, and social skills. Children with ASD develop at different rates in different areas of growth. They might have large delays in language, social, and cognitive skills, while their motor skills might be about the same as other children their age. They might be very good at things like putting puzzles together or solving computer problems, but not very good at some things most people think are easy, like talking or making friends. Children with ASD might also learn a hard skill before they learn an easy one. For example, a child might be able to read long words, but not be able to tell you what sound a "b" makes. A child might also learn a skill and then lose it. For example, a child may be able to say many words, but later stop talking altogether.
Source: CDC
4. How do I know if I should have my child tested for autism?
ASD are defined by a certain set of behaviors that can range from the very mild to the severe. If your child appears to exhibit a combination of the following behaviors, contact your primary care physician as soon as possible.
Possible Indicators of ASD:
- Does not babble, point, or make meaningful gestures by 1 year of age
- Does not speak by 16 months
- Does not combine two words by 2 years
- Does not respond to name
- Loses language or social skills
Some Other Indicators:
- Poor eye contact
- Doesn't seem to know how to play with toys
- Excessively lines up toys or other objects
- Is attached to one particular toy or object
- Doesn't smile
- At times seems to have a hearing loss
Source: NIMH
5. Who should diagnose my child?
All developmental disabilities require a multidisciplinary team evaluation that includes the child's caregivers. Each discipline and caregiver provides unique information that is critical to the determination of all developmental disabilities. Each profession in the team specifies conditions and concerns relative to their field, and how these findings relate to other possible disorders. Within this context, physicians and psychologists are responsible for specifying those conditions that are mental disorders, such as ASD and other Pervasive Developmental Disorders. Multidisciplinary team evaluations are available to all students, from infancy to 21 years of age, through publicly funded Early Intervention and Special Education services.
6. My child has just been diagnosed, what now?
When a child is first diagnosed, families often feel overwhelmed and unsure where to begin. You may experience a variety of feelings including grief, anger, and depression. It is important to find support for yourself during this time. Family, friends and support groups can be invaluable resources.
For your child, the most important thing you can do is access services as early as possible. Research has consistently shown that early intervention improves the outcome for children with ASD. In Pennsylvania, Behavioral Health Rehabilitation Services (Wrap-around) and Early Intervention programs are available statewide. These programs can be contacted directly or accessed through various county offices and service providers. Older children typically enter service through their school district as the first contact. School districts may have supportive classrooms or services. Additional services for older children can be accessed through outpatient clinics or Wrap-around services. For all of these services, the first step is for a professional to conduct a thorough assessment of the strengths and needs of your child. Goals and treatment strategies should be developed from this assessment to target the most essential skills in the areas of communication, behavior, and socialization.
7. What are the most effective treatments for autism?
The most effective treatments for autism would involve the following three components:
- The intervention should be provided with intensity, typically beginning with one-on-one instruction and utilizing a drill and practice approach. As the child progresses, the instruction should become more naturalistic and promote the generalization of learned skills to group or play settings.
- The intervention should include the collection of objective data on the child's progress. Decisions as to teaching methods, curriculum, or other treatment changes should be based on these data. Beware of treatments that are heavy on testimonials or anecdotal reports and light on data.
- The treatment should have solid empirical research behind it. By empirical research, we mean the use of controlled studies that involve both verification and replication. Publication of this research in peer-reviewed journals would also be a requirement. Two examples of such science-based treatment options are applied behavior analytic approaches and psychopharmacology.
Behavioral treatments can take on any of a number of popular "brand names" such as ABA, Lovaas, Verbal Behavior, or CLM. These variations may all have the three critical components present or they may not, depending on how they are implemented. It is of vital importance to select a specific treatment approach and a practitioner based on the presence of these three critical components and notsolely on the name.
8. Could medications help my child?
Medications in general have a limited role in improving symptoms of Autism. However, some may help prevent self-injury and other problamatic behaviors. Medications are primarily useful when behaviors interfere with the ability to take advantage of therapies or of educational and social opportunities.
It should be noted that there is no standard medication for treatment of autism. The American Academy of Pediatrics (AAP) suggests targeting the main one or two problem behaviors when considering medications.
Medications that are most often used to treat behaviors related to autism include selective serotonin reuptake inhibitors, psychostimulants, and antipsychotic medications.
Selective serotonin reuptake inhibitors (SSRIs)
Selective serotonin reuptake inhibitors (SSRIs)
include citalopram (Celexa), fluoxetine (Prozac),
and sertraline (Zoloft, Lustral). The high rate
of effectiveness for depression, anxiety, and
obsessive, stereotypical behaviors has made these
medications a popular choice for managing autism.
They may also improve general behavior, language,
learning, and socialization. In addition, while SSRIs
have side effects, such as weight gain, insomnia, and
increased agitation, they tend to be less serious than
those of antipsychotic medications.
Psychostimulant medications
Stimulants, including methylphenidate (Ritalin,
Concerta, Daytrana), amphetamine (Adderall),
dextroamphetamine (Dexedrine), along with newcomers
atomoxetine (Strattera), and dexmethylphenidate
hydrochloride (Focalin), are used commonly to
treat inattention, motor hyperactivity, and
impulsiveness in individuals with autism.
Adverse effects are usually mild and transient,
and may include decrease in appetite, sleep
disturbances, exacerbation of anxiety, irritability,
and disruptive behavior. Recent studies demonstrated
some positive effects and relative tolerability
of psychostimulants in autism; however, the results
have been mixed. It has also been shown that
stimulants are of benefit in a smaller proportion of
children with autism having symptoms
of hyperactivity/impulsivity/inattention than in
children with typical attention deficit
hyperactivity disorder (ADHD).
Antipsychotic medications
Antipsychotic medications, such as haloperidol (Haldol),
risperidone (Risperdal), and thioridazine work by
changing the effects of brain chemicals. They may
help decrease problem behaviors that can occur with
autism. A recent well-designed study found that
risperidone was effective for the treatment of
tantrums, aggression, and self-harming behavior in
children with autism. Risperdal is the first
medication approved for the treatment of irritability
associated with autistic disorder in children and
adolescents ages 5-16 years. However, these medication
can have side effects, including sleepiness, tremors,
and weight gain. Their use is usually considered only
in conjunction with behaviorial therapy or after
behaviorial therapy has failed to successfully
address the problem behaviors.
Other medications are also sometimes used, such as:
- Clonidine (Catapres) and guanfacine hydrochloride (Tenex). These medications are typically used to lower blood pressure but are also used to treat impulsive and aggressive behaviors in children with autism.
- Lithium (Eskalith, Eskalith-CR, Lithobid, Lithonate, Lithotabs) and anticonvulsants (carbamazepine [Carbatrol, Epitol, Tegretol], valproic acid [such as Depakene]). Children who are occasionally aggressive may become more stable when using these medications, although monitoring the level of the drug in the body through regularly scheduled blood tests is required.
The effectiveness of these medications varies by individual. Side effects are also possible and should be discussed with your health professional. Some health professionals may advise going off a medication temporarily, in order to identify whether it is having a positive or negative effect.
References
- Committee on Children with Disabilities, American Academy of Pediatrics (2001). Technical report: The pediatrician's role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107(5): 1-18.
- McCracken JT, et al. (2002). Risperidone in children with autism and serious behavioral problems. New England Journal of Medicine, 347(5): 314-321.
9. Will my child speak?
It depends. As with all the children on the spectrum, there are a lot of variables to take into consideration. The major ones include where the child is on the spectrum, incompatible behaviors, and physiology. Physiology is most likely the easiest to address. Simply stated, does the child have the vocal musculature to produce sounds which could eventually develop into words, sentences, and functional verbal communication? As for where the child lands on the spectrum and incompatible behaviors, they are somewhat intertwined. It appears that the lower the child is on the spectrum, the more numerous the obstacles in the development of functional verbal communication.
The child may also engage in incompatible behaviors that hinder the development of verbal behavior, including the exhibition of aggressive and/or self stimulatory behavior. These variables may consume most of the resources of treatment and distract the focus from the development of verbal behavior. In fact, the increase in verbal behavior (or some form of functional communication) will help decrease both of these variables. If the child has learned to exhibit aggressive behavior to get their wants and needs met, then they need to be taught to use appropriate communication to decrease the aggression. Furthermore, if the child learns a functional manner to request play or recreational activities, self stimulatory behavior should decelerate. Although verbal behavior is the most sought after effect with children on the spectrum, there are other effective procedures to increase functional communication, albeit not vocal behavior. These procedures include sign language, picture exchange systems, and augmentative speech devices.
10. Will my child go to public school?
All children with ASD have a right to a free appropriate public education that is designed to meet their unique needs. Children with ASD are enrolled in public schools, private schools, and are also home schooled. The setting will be determined by the child's education team, including parents.
Even when the education team and parents decide that the child's needs are best served in a public school, there are still many different environments in which education may be provided within regular public school buildings. Some children with ASD are educated in regular classrooms, some are in autistic support classrooms, some are in emotional support classrooms, and some receive services in learning support classrooms. Speech-language pathology may be offered in a variety of manners, as well as other related services. Additionally, all educational and related therapy services may be offered singly or in combination, full-time or part-time. Other variables include what types of support personnel children with autism access within the agreed-upon environment, including 1:1 aides, TSS, or otherwise enhanced staffing patterns. Again, all decisions regarding the types, levels, and locations of services received by a child with autism are made as a multi-disciplinary team, with the parents playing a key role. These types of decisions require a close working relationship between the local education agency and the parents of a child with ASD.
11. What will my child be able to do as an adult?
Autistic traits persist into adulthood, but with a wide range of outcomes. Some adults with ASD achieve college degrees and function independently. Most of those diagnosed with "classic" autism do not develop functional language and communication, and may have poor daily living skills throughout their lives. Some adults with ASD who live without support may be commonly considered as reclusive or eccentric. By adulthood, the person's life and treatment experiences, the effects of medications, and her/his own efforts to cope with the disorder often mask symptoms of the disorder.
What do studies show happens to adults who were diagnosed with ASD as children?
- The core symptoms of autism, that is, impaired social skills, verbal or nonverbal communication, and restricted interests, persist into adulthood.
- Most of the adults followed up in adulthood still required assistance with day-to-day living.
- Some adults had completed higher education or vocational training, had friends, and were able to keep a job.
- The majority, however, were unable to hold down a job or to complete formal schooling.
- Adults with a childhood IQ of more than 70 fared better than those with IQs lower than 70.
Conclusions: All participants in most studies had problems associated with the symptoms of autism that persisted into adulthood. While continued research is needed to more carefully define what aspects of autistic symptoms most severely affect outcome, many studies do show that IQ over 70 has some effect. Outcome for those with IQs of 70 or more was better, whereas those with IQs lower than 70 had a poorer prognosis. Few adults were able to live independently, and most had impairments in social communication skills. This assessment can help with service planning for children with ASD in that it demonstrates areas in which educational interventions should be targeted.
On the more positive side, we must keep in mind that previous studies are primarily based on groups of individuals that did not receive early diagnosis, intervention, or other support services. The prognosis for the current generation of young children with ASD that have access to today's best treatment practices, may indeed have a much better prognosis and brighter future to which they may look forward.
12. My family member/friend has a child with autism - what can I do to help?
Initially, when a family member or a friend tells another person that their child has been diagnosed with an ASD, most people don't know what to say. It is hard enough for the parents to receive this diagnosis, let alone to tell their family and friends.
Often parents have reacted to the diagnosis by crying; feeling surprise, devastation, or helplessness; and/or by seeking out additional information on autism. Many parents and professionals said family members go through a grieving process after receiving this news.1 Parents of children with ASD are grieving the loss of the "typical" child that they expected to have.2 Many parents were also worried how other close relatives and friends would react to the diagnosis.1 Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community.2 From the point of view of the family member or friend, not only is he/she experiencing pain for the child, but also for the parent of the child - their friend or family member.
Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.2 As a family member and/or friend, one must be aware that the feelings of grief that parents experience can be a source of stress due to their ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (i.e. birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994).2
Here are some tips for supporting the parent(s) of a child with ASD:
-
Make yourself available for the parent(s)
to provide emotional support, i.e.
telephone conversations,
coffee breaks, shopping, and/or social
events. Be mindful that parents of
children with ASD need
to reward themselves more often than parents of
typical children, because parenting their child
is often frustrating and stressful.2 - Accompany parent(s) to important doctor's appointments, school and community functions to provide an objective viewpoint.
- Volunteer to serve as an advocate for the child, as needed.
- Familiarize yourself with current literature regarding ASD and treatment options.
- Invite the family to events and gatherings where the child with ASD will feel comfortable and be accepted.
- Help parents realize that although life will be different than what they had planned, there are still times to laugh and see the positive moments.
Citations
1
"The Impact of Autism on the
Family," The National Autistic Society.
(August, 2006)
2
Horowitz, Adrianne.
"Living with Autism: Stress on Families."
The Autism Society of America.
13. Is there a cure for autism?
Mental disorders are not equivalent to physical illnesses, so "cure" is not the generally chosen term to refer to expected outcomes for these conditions. The management of mental disorders through addressing all treatable physical, sensory, and health factors; applying established principles of learning for instruction in all areas; and appropriately utilizing medications for select symptoms are more meaningful ways to ensure progress.
14.
What services does the Barber National
Institute provide for children
and adults with autism?
The Barber National Institute offers the following services to support individuals with ASD:
- Adult Autism Connection
- Adult Day Services
- Approved Private School
- Before & After Preschool Child Care
- Behavioral Health Rehabilitation Services
- Connections Camp
- Early Intervention
- Elizabeth Lee Black Specialized Preschool
- The Employment Opportunities Center
- Forest-Warren Autism Early Identification Diagnostic and Treatment Center
- Family Support Services
- Happy Hearts Inclusive Preschool
- Home and Community Based Waiver Services
- Autism Support Program
- Mental Health Partial Hospitalization Program
- Parent Support Groups
- Residential Living Options
Please visit each program for additional information.
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