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What is Autism?
| What is Autism
| FAQs
FAQ - About Autism
- What is autism?
Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.
Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development”. - ASA
- How common is autism?
Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 110 births (Centers for Disease Control Prevention, 2007). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism, and this number is on the rise. Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.
Autism knows no racial, ethnic, or social boundaries; family income levels; lifestyle choices; or educational levels, and can affect any family and any child. And although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls. - ASA
- How are ASDs diagnosed?
There is no medical test for ASDs. Doctors look at behavioral symptoms to make a diagnosis. Typically, a diagnosis is made after a thorough evaluation. Such an evaluation may include clinical observations, parent interviews, developmental histories, psychological testing, speech and language assessments, and possibly the use of one or more of a variety of autism diagnostic scales. Because ASDs are a complex disorder, a comprehensive evaluation may also include physical, neurological, and genetic testing.
The most common autism diagnostic tools include:
- Autism Diagnostic Interview – Revised (ADI-R)
- Autism Diagnostic Observation Schedule (ADOS)
- Childhood Autism Rating Scale (CARS)
- The Gilliam Autism Rating Scale (GARS) - CDC
- What are characteristics of an ASD?
ASDs are characterized by delays or impairment in social skills, language, and behavior (repetitive or stereotypical behaviors).
- What are some warning signs of an ASD?
- not play pretend games
- not point at objects to show interest
- not look at objects when another person points at them
- have trouble relating to others or not have an interest in other people at all
- avoid eye contact and want to be alone
- have trouble understanding other people’s feelings or talking about their own feelings
- prefer not to be held or cuddled or might cuddle only when they want to
- appear to be unaware when other people talk to them but respond other sounds
- be very interested in people, but not know how to talk to, play with, or relate to them
- repeat words or phrases said to them, or repeat words or phrases in place of normal language (echolalia)
- have trouble expressing their needs using typical words or motions
- repeat actions over and over again
- have trouble adapting to changes in routine
- have unusual reactions to the way things smell, taste, look, feel, or sound
- lose skills they once had (for instance, stop saying words they once were using) - CDC webpage
- What is the difference between autism and PDD?
Autism is one of five developmental disabilities that falls under the umbrella of Pervasive Developmental Disorder (PDD). PDDs are defined in the American Psychiatric Association’s Diagnostic and Statistical Manual for Mental Disorders, 4th Edition – Text Revision (DSM-IV-TR) and include the following disorders: Autistic Disorder, Rhett’s Syndrome, Childhood Disintegrative Disorder, Asperger’s Syndrome, and PDD Not Otherwise Specified (PDD-NOS).
- What is Asperger’s Syndrome?
Asperger Syndrome is a pervasive developmental disorder that is characterized by an inability to understand how to interact socially. Typical features of the syndrome also may include clumsy and uncoordinated motor movements, social impairment with extreme egocentricity, limited interests and unusual preoccupations, repetitive routines or rituals, speech and language peculiarities, and non-verbal communication problems. The onset of Asperger Syndrome commonly occurs after the age of 3. Some individuals who exhibit features of autism, but who have well-developed language skills may be diagnosed with Asperger Syndrome.
There is no specific course of treatment or cure for Asperger Syndrome. Treatment, which is symptomatic and rehabilitational, may include both psychosocial and psychopharmacological interventions such as psychotherapy, parent education and training, behavioral modification, social skills training, educational interventions, and/or medications including psycho-stimulants, mood stabilizers, beta blockers, and tricyclic-type antidepressants.
Children with Asperger Syndrome have a better outlook than those with other forms of pervasive developmental disorders and are much more likely to grow up to be independently functioning adults. Nonetheless, in most cases, these individuals will continue to demonstrate, to some extent, subtle disturbances in social interactions. There is also an increased risk for development of psychosis (a mental disorder) and/or mood problems such as depression and anxiety in the later years.
- Are there any co morbid conditions associated with autism?
- Cognitive dysfunction
- Seizures
- Chronic constipation or diarrhea
- Sleeping problems
- Pica
- Low muscle tone
- Sensory problems
- Do vaccinations cause autism?
There is currently a debate within the autism community itself regarding what impact, if any, vaccinations have on autism. A significant amount of research has been conducted in the last several years, and the scientific community has yet to establish any link between vaccinations and autism. Individuals hesitant about using vaccinations for their children are encouraged to review national literature from the Autism Society of America or Autism Speaks and then discuss their concerns with their child’s pediatrician.
- Can autism be “cured”?
Unfortunately there is currently no cure for autism. Some therapies and interventions have shown to be very successful for some individuals on the spectrum, but no one intervention works for all individuals. Be careful of any web sites or individuals offering to “cure” autism.
State Services
- What are DES, AZEIP, DDD, ALTCS, and AHCCCS?
The Arizona Department of Economic Security (DES) includes the Arizona Early Intervention Program (AZEIP) and the Division of Developmental Disabilities (DDD). These organizations assist families in obtaining benefits and support for dealing with individuals with disabilities or individuals who are at risk for institutionalization. AZEIP covers children up to 3 years old, and DDD covers children older than 3 years old. Individuals who suspect a loved one may need services should contact the appropriate organization (see links on web page).
The Arizona Health Care Cost Containment System (AHCCCS, pronounced “Access”) is the Arizona Medicaid system. Individuals brought into the AZEIP or DDD system may receive partially or fully funded services. Individuals covered under the Arizona Long Term Care System (ALTCS) typically receive the most fully funded services.
- What is the difference in how Arizona views ASD versus Autistic Disorder?
ALTCS funding covers services (e.g., OT, PT, speech therapy, ABA, misc.) for individuals with a diagnosis of ASD up to the age of 6. Once the individual reaches the age of 6, a diagnosis of Autistic Disorder, as defined by the DSM-IV-TR, is required for continued funding. Autistic Disorder is a more narrow interpretation of autism than what is generally referred to as ASD. Autistic Disorder can only be diagnosed by an Arizona licensed psychologist or psychiatrist.
- How do I qualify for services in Arizona?
Anyone can make a referral to AZEIP or DDD. Information is recorded and appropriate referrals are made for evaluations for eligibility. To be eligible for AZEIP, a child needs to be at risk (before three years of age) for delays or abnormal functioning in at least one of the following areas (with onset prior to three years of age): social interaction, language used in social situations, or symbolic or imaginative play.
- Will my company insurance cover services for autism?
Most companies currently do not cover services for autism, although new legislation in Arizona (HB2847, aka “Steven’s Law”) mandates that companies (with some exceptions) will have to start providing services effective July 2009. Services to be provided include physical, occupational, and speech therapies, and applied behavioral analysis (ABA) programs. Privately insured companies, and companies with fewer than 50 employees, are exempt from the law.
Therapy
- What are the most common therapies or treatment programs for autism?
The most common therapies include comprehensive behavioral and/or social programs, such as ABA, SCERTS, TEACHH, and other programs. Comprehensive behavioral programs frequently include other therapies, such as occupational therapy, physical therapy, speech therapy, and/or music therapy.
- What is ABA?
ABA, or Applied Behavior Therapy, refers to the science of behavior. Comprehensive behavioral programs that rely on the principles of ABA include PRT, Discrete Trial, NET, and others. Proper ABA programs consist of research-validated methods that are specifically tailored to each individual, and are designed to change socially important behavior in meaningful ways.
- Where can I find a list of service providers in the Tucson area?
There is a list of qualified consultants from the Division of Developmental Disabilities.
- Why is early intervention so important?
Early intervention is defined as services delivered to children from birth to age 3, and research shows that it has a dramatic impact on reducing the symptoms of autism spectrum disorders. Studies in early childhood development have shown that the youngest brains are the most flexible. In autism, we see that intensive early intervention yields a tremendous amount of progress in children by the time they enter kindergarten, often reducing the need for intensive supports. - ASA
Nutrition
- How does nutrition affect autism?
There is a lot of disagreement among “experts” about how nutrition affects autism. Many kids on the spectrum exhibit signs of food sensitivities and gut problems. Doctors and parents following a biomedical approach believe that at least some of the causes of Autism are biological in nature. These causes include nutritional deficiencies, food sensitivities and environmental pollutants. These doctors and parents have found that by combating the nutritional deficiencies, food sensitivities and environmental pollutants with special diets, their children have shown vast improvements. One of the more popular diets is the gluten free, casein free (GFCF) diet.
- What is the GFCF diet?
Simply put, the Gluten free Casein free diet is exactly what the name says: a diet free of gluten and casein. Gluten is the protein found in wheat products, while casein is the protein found in dairy products. Removal from the diet of these similar proteins has led to improvements in some children with autism. For further information, please see the resources below.
- Should I talk to my child’s pediatrician or a nutrition specialist prior to implementing a biomedical or specialized diet for my child?
It is always a good idea to speak to your child’s doctor or specialist before implementing any treatment. Also, remember that, like any treatment, specialized diets have been effective for some, but not for all. It is important to weigh your child’s specific situation. To help in your decision making process, some great resources are, “Special Diets for Special Kids” by Lisa Lewis and “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” by Karyn Seroussi. An additional list of recommended books is included on this web page (click on the heading “Books”).
Schooling
- Can my child with autism go to school with typically-developing children?
Yes, in fact it is generally recommended that children with special needs be educated in an inclusive environment. Studies show that inclusive educational environments benefit both the individual with special needs and the typically-developing children. In certain circumstances, based on the specific needs of the individual, education in a separate program may be warranted.
- What is the best school for a child with autism?
There is no particular school, or even school district, that is specifically recommended. Parents are highly encouraged to meet with personnel within the school district and at various schools to discuss the specific needs of their child.
- What is an IEP and why is it important?
IEP stands for Individualized Education Plan. This is a legally binding document that spells out exactly what special education services your child will receive and why. It will include your child’s classification, placement, services (such as a one-on-one aide and therapies) academic and behavioral goals, a behavior plan (if needed), percentage of time in regular education, and progress reports from teachers and therapists. Input from the child’s parents is not only acceptable, but necessary to develop the most effective IEP. It is important to remember that the IEP is designed to serve the best interests of the child (not the teacher, school or school district). The IEP is planned at an IEP meeting with appropriate school personnel (e.g., classroom teacher, special education teacher, therapists, administration, and others).
- Where do I go if I do not agree with my child’s IEP or have issues with his education?
The first step in trying to resolve a dispute with your child’s IEP is to try to resolve it within the school and district. You can request an IEP meeting to discuss the situation. If that meeting does not provide a satisfactory conclusion, you can go to the district or state. Each school district should provide you with a copy of parental rights at or prior to the meeting. This, plus their website, will guide you on their complaint procedures. It is important to do everything in writing, using concise, polite language. To download a copy of the procedures for filing a complaint on a state level go to www.ade.az.gov/ess/dispute. A wonderful guide for dealing with schools and IEPs is “From Emotions to Advocacy, Second Edition, The Special Education Survival Guide”, by Pam and Pete Wright.
More Information
- What are the best web sites and books to get more information about autism?
A list of some of the most popular books and web sites regarding autism are included on the web site of the Tucson Alliance for Autism. Some of them include: Ten Things Every Child With Autism Wishes You Knew; Understanding Autism for Dummies; Thinking in Pictures; The Out of Sync Child, Recognizing and Coping With Sensory Processing Disorder; The Speed of Dark. Refer to the “Books” link on this web site.
- Are there any parent support groups available?
Local support groups in the Tucson area are listed on the TAFA web page under the heading “Support Groups”.
- Is there a person I can speak with at TAFA if I have any questions?
If you have any questions you cannot find an answer to, or if you would like to speak directly with someone to assist you, please contact TAFA at 319-5857.
- Are there any e-mail distribution lists that provide information to the Tucson community?
The Autism Society of Greater Tucson (ASGT) Google Group list is a large e-mail distribution group that is used by TAFA and the Autism Society of Greater Tucson (ASGT) to distribute information and for individuals in the autism community to share information and resources. Individuals are encouraged to join by logging on through the Autism Society of Greater Tucson (ASGT) web page at www.tucsonautism.org. (Individuals can quickly and easily remove themselves from the distribution list at any time if they choose.)
- I want to get more involved in the autism community. How do I do that?
The Tucson Alliance for Autism and Autism Society of America – Pima County Chapter are continually looking for individuals to volunteer for various events and to assist the autism community. Additionally, both organizations continually look for qualified, committed individuals to serve of the Boards of Directors. If you are interested in serving the autism community to affect positive change, please click on the “Get Involved” link on this web page.
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