Autism Spectrum Disorder (ASD)
ASD is a neurobiological disorder that typically affects development within the first three years of life and is characterized by deficits and symptoms in the following areas:
- Impaired communication ability (may be verbal, partially verbal, or non-verbal);
- Impaired social interaction;
- Restricted and/or repetitive interests (includes repetitive actions; verbally repeating words, phrases, or sentences (i.e. perseverating on a topic)
- Sensory issues—over or under sensory stimulation
Signs and Characteristics of Autism
Parents may notice specific characteristics or behaviors in their child, and sense something is not quite right. Listen to these feelings! The following is a partial list and all children may exhibit other characteristics, or varied levels of the characteristics. Remember: no two people have the exact, same characteristics with autism. If you notice things are “different” about your child, you may not know exactly how to put the differences into words. It is important that parents are in tune to these concerns and discuss them with their health care provider as early as possible. Parents know their children better than anyone and are advocate for their well-being—do not delay! Early intervention is very, very important to improved outcomes with ASD.
According to the First Signs (http://www.firstsigns.org/concerns/flags.html) and Act Early websites (http://www.cdc.gov/ncbddd/actearly/milestones/index.html), the following are possible signs of ASD. If your child exhibits two or more of these signs discuss them with your primary health care provider.
- Difficulty expressing needs or wants
- Difficulty communicating in a functional or meaningful way.
- May cry or laugh for no apparent reason.
- Processing instructions or other forms of communication, or may seem to take a long time to understand an instruction.
- May demonstrate echolalia and repeat back words or phrases (from peers, parents, teachers, television, or other forms of verbal or media input)
- Difficulty or inability to engage in joint attention (i.e. share interest or objects with others, following gazes, point, gesture, or interact socially).
- May line up, spin, or show inappropriate attachment to toys or objects.
- May have frequent tantrums, aggression, or self-injurious behaviors (SIB).
- May demonstrate repetitive, stereotypic self-stimulatory (stimming) behaviors. This repetitive behavior can be in the form of actions (such as spinning, hand flapping, twitching fingers, etc.) or in the form of repetitive conversation (such as repeating words, phrases, sentences, reciting parts of movies over and over, etc.); it is behavior that does not seem to have a purpose, and interferes with daily living.
- May resist change—desire sameness.
- May appear aloof, deaf, or want to be alone.
- Difficulty taking another’s perspective or reading another person, reading body language, facial expression, or gestures (take others literally).
- Difficulty starting or sustaining a conversation.
- Difficulty with peer relationships.
- May not make eye contact.
- Sensory processing issues: hyper or hyper sensitive to sensory inputs.
- Particular about food choices and textures.
- Physically over or under activity.
- Over or under sensitivity to physical pain.
- Difficulty with fine and/or gross motor skills.
- Limited or no eye contact.
- Skills are Fragmented or Splintered—individual may be exceptionally strong in some areas while deficient in others (e.g. outstanding math skills but difficulty with reading and comprehending a book or story).
- Physiological issues—may have gastrointestinal issues, food allergies, and other medical concerns.
- 1 in 68 children in the U.S. have an ASD (CDC Online).
- Approximately 16,590 children in Michigan public schools with Autism. (MDE2012)
- Michigan had the 5th largest autism population as compared to other U.S. states in 2007.
- Autism is the fastest growing developmental disability in the U.S.
- Autism effects boys 4-5 times more often than girls (NIMH Online).
- Parents who have a child with autism have a 2%-8% more likely to have another child with autism (CDC Online).
- Approximately 40% of those with autism do not speak (CDC Online).
- Autism is a lifelong disability and those with autism live a normal life span.
- Estimated lifelong costs for those with autism depending on system supports will exceed $3.2 million (CDC Online).
- There is not a medical test to diagnose autism, nor is there a cure at this time.
- The symptoms of autism often can be greatly reduced with intensive early intervention; often leading to higher quality lives.
American Academy of Pediatrics Recommendation for Screening
The American Academy of Pediatrics has recommended ALL children be screened at well-child visits for autism and other developmental disabilities at 18 and 24 months. The tool that is used is called the “Modified Checklist for Autism in Toddler’s” (MCHAT). This is a 23-question SCREENING tool. It does NOT diagnose autism, but considers possible “red flags”. You can download this tool at NO COST, complete it, and take it to your physician at any time. Remember that this is JUST a screening tool, and even if your child does not have autism, he or she may have some other developmental delay that may need attention and intervention.
The link is: www.m-chat.org. Go to the Parents and Caregivers section, and honestly answer the questions. You will be provided results instantly and you can print and take them to your physician.
New Criteria for Autism Spectrum Disorder (ASD)
The diagnostic criteria for autism changed in 2013. The change was made after 19 years of research and clinical practice. The last update to the autism diagnosis was in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). The American Psychiatric Association has just published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
- The diagnosis will be called Autism Spectrum Disorder (ASD), and there no longer will be sub-diagnoses (Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Disintegrative Disorder).
- In DSM-IV, symptoms were divided into three areas (social reciprocity, communicative intent, restricted and repetitive behaviors). The new diagnostic criteria have been rearranged into two areas: 1) social communication/interaction, and 2) restricted and repetitive behaviors. The diagnosis will be based on symptoms, currently or by history, in these two areas.
- Note that individuals diagnosed under DSM-IV criteria will maintain their existing diagnosis, it should not change.
Source: American Academy of Pediatrics: http://aapnews.aappublications.org/content/early/2013/06/04/aapnews.20130604-1
What are the signs of autism?
Autism is characterized by deficits/limitations in three areas: social interaction, communication, and restricted/repetitive behaviors, interests, and/or play. Signs of autism will include those behaviors falling into these three criteria: poor eye contact, lack of directed smiling (i.e., smiling while looking at another person), sharing interests with others, difficulty making and keeping friends, unusual play interests and manipulation of objects (i.e., focusing on details or non-productive components), restrictive conversational topics (e.g., conversations about Star Wars, trains, cars, etc). An individual may present with behaviors in all categories to a significant degree, or only a few, which is why the term “autism spectrum” was adopted.
I think my child has autism. What do I do now?
You should discuss your concerns with your pediatrician. It is always helpful to bring descriptions of the behaviors reflecting your concerns. Concrete examples, such as poor eye contact, unusual play behavior, difficulty socializing, are helpful to the pediatrician in determining whether or not an evaluation is needed. Your pediatrician may conduct an autism screening, which should be completed (minimally) at 18 and 24 months of age (Pediatrics, 2007). Your pediatrician should then refer you to an autism specialist. Those professionals with qualifications to independently diagnose autism may include: a pediatric neurologist, a child psychiatrist or psychologist, and/or a developmental pediatrician. In some cases, your pediatrician may direct you to a speech/language pathologist if the concerns appear mostly related to language development. To assure accurate diagnosing, standardized assessment tools, administered by a team of highly qualified specialists, is recommended.
My child was recently diagnosed with autism. Where do I begin?
Many therapies exists for autism and sorting out which is best for your child is not your sole responsibility. Prior to the evaluation, inform the diagnostician that you will be looking for specific recommendations for services and supports your child may need. Although the first purpose of the evaluation is to determine a diagnosis, the second goal is to identify which therapies or other services and supports may be beneficial for your child and family. Insist that your doctor direct you to quality programs that address the core deficits of autism and that recommendations for educational programming are included in the assessment results.
What treatments are proven to help those with autism?
The most widely known treatment for autism, with the greatest amount of research demonstrating effectiveness is applied behavioral analysis (ABA). Applied Behavioral Analysis (ABA) is based on principles of behavioral psychology and is intended to reduce disruptive/undesirable behaviors and build functional, alternative skills. While ABA is considered a more structured, adult-directed form of therapy and is often conducted in clinic settings, it can also be appropriate for managing behaviors in the home and/or school. Newer models of (non-ABA) intervention include those based on developmental/relationship based principles. These programs often focus on social and emotional engagement with the child and building social interaction and communication skills with the child in a less structured therapy context than what is often found in ABA programs.
Why is early intervention important?
Research shows that early, intensive intervention significantly improves long-term outcomes for children with ASD and in the long run, saves money by reducing the number of resources needed for these children as they age. The current, evidence-based recommendation for intervention is 20-25 hours/week of intensive therapy (NRC, 2001). Because a child’s brain undergoes such rapid growth in early childhood, the best time to “induce” permanent change through intervention, is under the age of three years, and minimally, under the age of five years.
My child is X age and did not have early intervention. What can I do for him/her?
Although the best time to begin intervention is prior to age 3, it is never too late to begin therapy. Different therapy programs exist to address the challenges that arise across the lifespan, whether your child has had early intervention or not. For example, the focus of speech therapy will change as an individual’s communication skills develop over time and across different settings, such as the home to school and school to work. Behavioral therapies are designed to address skill building and eliminating undesirable behaviors at any age. Social stories are another example of an effective approach to teaching social skills in challenging situations. These can be used with younger children, during the adolescent period, and even for some adults.
What kind of life can my child have with autism?
The goal of any intervention program should be to increase functional and academic skills to move an individual towards independence and increase the chances he/she will live a productive, fulfilled life. No “magic ball” exist which predicts which children will become fully independent as an adult. Many factors are considered when determining outcome. These include: cognitive, language, and adaptive functioning levels at the start of intervention, age intervention was initiated, the individual’s response to intervention, for example. Children diagnosed with PDD and Asperger’s, who fall at the mid-higher functioning range of the spectrum, tend to have better outcomes than those with classic autism and those with significant cognitive impairment/mental retardation.
What is the difference between autistic disorder and Asperger’s syndrome?
An individual with autism presents with behaviors in all three categories of socialization, communication and restricted/repetitive behaviors. Additionally, individuals with autism may or may not have cognitive impairments. An individual with Asperger’s presents with deficits/limitations in socialization and restricted/repetitive behaviors, but by definition, have normal to above average cognitive and language skills.
I need X service for my child. Where do I find it?
The better question here is, “How do I find a quality program?” Therapy programs for individuals with autism can be found just about anywhere these days and a simple on-line search will produce literally, thousands of services. What caregivers should look for are highly qualified individuals who provide evidence-based therapies known to produce positive outcomes. Caregivers should insist that therapists provide regular measures of progress, as well, so that precious time and money are not wasted on interventions that do not work. Unfortunately, not every child benefits from evidence-based therapies. In those cases, a different type of intervention may work for your child. Research has not yet identified which characteristics of an individual predict success in a given treatment program. Nevertheless, caregivers should always consult with their doctor regarding recommendations for quality services versus making decisions based solely on websites or word-of-mouth.
What does evidence based services mean?
There are three components to evidence based services:
- a) sufficient studies have been conducted to show that a program or approach is effective in producing a meaningful result,
- b) sound clinical judgment regarding the appropriateness of a program or approach, and
- c) consideration of family values in selecting an appropriate program or approach.Do vaccines cause autism?There are now sufficient studies which demonstrate that vaccinations do not cause autism. It is important, however, for parents to discuss their concerns regarding the effects of vaccinations with their pediatrician. It is the pediatrician’s job to complete a thorough medical and family history of factors associated with negative effects of vaccinations for that individual child. There are conditions which create a higher risk status for side effects in any child. In these cases, your pediatrician may recommend an alternative schedule for your child. Additionally, your pediatrician may choose to delay immunization if your child is sick.
What do all those abbreviations and letters mean?
- AAC: Augmentative and Alternative Communication system: Any system designed to supplement verbal communication. May include: pictures, gestures, voice output systems, etc.
- ABA: Applied Behavioral Analysis therapy
- ASD: Autism Spectrum Disorder
- BCBA: Board Certified Behavioral Analyst: Qualified individual to provide ABA
- CAM: Complementary and Alternative Medicine: Programs and services that are considered non-conventional and are lacking sufficient research to demonstrate effectiveness for large groups of individuals.
- CDC: Center for Disease Control and Prevention
- DIR: Developmental, Individual-Difference, Relationship-Based Model
- DSM: Diagnostic Statistical Manual
- DT: Discrete Trial: A type of ABA utilizing traditional ABA principles and processes, most often implemented in the clinic setting.
- ICD: International Classification of Diseases
- IEP: Individualized Education Plan: an education plan created by the IEP team (e.g., teachers, social workers, educational psychologist, speech-language pathologist, and/or occupational therapist) and caregivers.
- IEPC: Individualized Education Planning Committee
- MSW: Masters of Social Work
- OT: Occupational Therapist
- PDD: Pervasive Developmental Disorder
- PECS: Picture Exchange Communication System: a picture system based on ABA principles which utilizes visual depictions of activities, objects, events, persons to improve language, behavior, and academic areas
- P.L.A.Y.: Play and Language for Autistic Youngsters: a type of developmental/relationship based therapy
- PRT: Pivotal Response Therapy: A type of ABA which incorporates more natural, child-centered environments and procedures than traditional ABA.
- RDI: Relationship Developmental Intervention: a type of developmental/relationship based therapy
- SCERTS: Social Communication Emotional Regulation Transactional Support therapy: a type of developmental/relationship based therapy
- SI: Sensory Integration: a type of therapy provided by an occupational therapist to improve an individual’s responsiveness to sensory stimuli (e.g., noise, touch, movement, taste, etc).
- SLP: Speech-Language Pathologist
- TEACCH: Teaching and Educating Autistic Children