Our goal is to simplify the information gathering and evaluating process. Our approach is to provide multiple perspectives from leading authorities and varies websites on autism related topics. This will provide our readers the opportunity to gather multiple viewpoints from a single location and form the best-educated decisions for their family’s needs.
Disclaimer: The Autism Resource Foundation provides general information to the autism community. The information comes from a variety of sources, and the Autism Resource Foundation does not independently verify any of it, nor does it necessarily reflect the views and/or opinions of the Autism Resource Foundation. Nothing on this website should be construed as medical advice. Always consult your doctor regarding the needs of your family.
Source: Autism Society
When parents or support providers become concerned that their child is not following a typical developmental course, they turn to experts, including psychologists, educators and medical professionals, for a diagnosis.
At first glance, some people with autism may appear to have an intellectual disability, sensory processing issues, or problems with hearing or vision. To complicate matters further, these conditions can co-occur with autism. However, it is important to distinguish autism from other conditions, as an accurate and early autism diagnosis can provide the basis for an appropriate educational and treatment program.
Other medical conditions or syndromes, such as sensory processing disorder, can present symptoms that are confusingly similar to autism’s. This is known as differential diagnosis.
Some conditions may have symptoms similar to autism; therefore, professionals must be diligent when determining a diagnosis and its treatment.
Following is a list of related syndromes/disorders that manifest behaviors similar to those of autism and/or are more prevalent in individuals with autism:
- Congenital Rubella Syndrome
- Cornelia deLange Sydrome
- Down Syndrome
- Fragile X Syndrome
- Klüver-Bucy Syndrome
- Landau-Kleffner Syndrome
- Lesch-Nyhan Syndrome
- Untreated Phenylketonuria (PKU)
- Prader-Willi Syndrome
- Rett Syndrome
- Tourette Syndrome
- Tuberous Sclerosis
- Williams Syndrome
There are many differences between a medical diagnosis and an educational determination, or school evaluation, of a disability. A medical diagnosis is made by a physician based on an assessment of symptoms and diagnostic tests. A medical diagnosis of autism spectrum disorder, for instance, is most frequently made by a physician according to the Diagnostic and Statistical Manual (DSM-5, released 2013) of the American Psychological Association. This manual guides physicians in diagnosing autism spectrum disorder according to a specific number of symptoms.
A brief observation in a single setting cannot present a true picture of someone’s abilities and behaviors. The person’s developmental history and input from parents, caregivers and/or teachers are important components of an accurate diagnosis.
There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual’s communication, social interaction, and his or her activities and interests.
Because many of the behaviors associated with autism are common to other disorders, some medical tests can be performed in order to identify other causes or diagnoses. People with autism often have symptoms of various co-occurring mental, behavioral and physical conditions.
Medical professionals who may have experience with autism and other neurodevelopmental disorders include pediatricians (especially developmental pediatricians), neurologists (specifically pediatric neurologists), and child and adolescent psychiatrists. Not every one of these professionals has experience with autism, so parents and caregivers should seek recommendations of knowledgeable professionals in their area from:
- their local Autism Society affiliate
- autism support groups
- people who have children or other family members with autism
- their primary-care provider
A skilled practitioner can begin the assessment; the evaluation itself can vary depending on the professional administering it, the age of the person being assessed, the severity of his or her symptoms, and local available resources.
For example, if a very young child (1-3 years old) is showing significant developmental delays, a primary-care practitioner may refer the family to a psychologist, pediatric neurologist or developmental pediatrician for a diagnostic assessment.
An initial medical assessment typically includes:
- a medical history of the mother’s pregnancy
- developmental milestones
- eating and sleeping habits
- stomach and bowel functioning
- sensory challenges
- medical illnesses, including ear infections and seizures
- any family history of developmental disorders
- any family history of genetic and metabolic disorders
- parents’ and the child’s exposure to environmental toxins
- a thorough physical exam
- routine lab tests
While there is no one behavioral or communications test that can detect autism, several screening instruments are now being used in diagnosing it.
An educational determination is made by a multidisciplinary evaluation team of various school professionals. The evaluation results are reviewed by a team of qualified professionals and the parents to determine whether a student qualifies for special education and related services under the Individuals with Disabilities Education Act (IDEA) (Hawkins, 2009).
The first step in obtaining special education services is for your child to be evaluated. The evaluation can be done when your child is first suspected of having a disability (pre-placement evaluation) or when your child’s level of functioning changes in one or more areas (re-evaluation). There are two ways in which a child can be evaluated under the Individuals with Disabilities Education Act:
- The parent can request an evaluation by calling or writing the director of special education or the principal of the child’s school.
If you call, put your request in writing as well, keeping a copy for yourself. This should be part of your routine communication with anyone concerning your child’s education. Follow up on all telephone calls with a letter summarizing the conversation. This way, the other party has the opportunity to make corrections to any misunderstood information, and you have a paper trail in case of a disagreement with the school system.
- The school system may determine that an evaluation is necessary. If so, they must receive written permission from the parent before conducting the evaluation.
An evaluation should be conducted by a multidisciplinary team or group, which must include at least one teacher or other specialist with specific knowledge in the area of the suspected disability. IDEA mandates that no single procedure can be used as the sole criterion for determining an appropriate education program. The law also requires that the child be assessed in all areas related to the suspected disability, including but not limited to health, vision, hearing, communication abilities, motor skills, and social and/or emotional status.
If the parents disagree with the results of the evaluation, they may choose to obtain an independent evaluation at public or private expense. You may request a list of professionals that meet state requirements from your school, or you can choose one on your own. If the professional chosen meets appropriate criteria set up by the state, then the school must consider his/her evaluation in developing an IEP.
The above standards also apply for a child who already receives special education services. A re-evaluation must take place at least every three years. It may, however, be conducted more often if the parent or a teacher makes a written request. An evaluation may also focus on a specific area of concern. A re-evaluation of all areas of suspected need is necessary if parents feel their child is not meeting the short-term objectives of his/her current IEP.
Parents who feel their child’s placement should be changed need to have a basis for the request. For example, a child may be exhibiting new problem behaviors. It may be necessary to reassess his/her placement or develop new behavior techniques to address this area. As a first step, an evaluation by a specialist familiar with ASD behaviors could be requested. The IEP can then be changed to reflect the results of the evaluation.
For example, a child may have an annual goal to increase her language production and comprehension skills, but is not meeting the objectives developed in her IEP for this goal. The parent may wish to request a re-evaluation with a speech therapist who is knowledgeable about autism. It may be determined from the results that an increase in the weekly number of hours of therapy is necessary.
A re-evaluation of all areas of suspected need may come prior to the scheduled annual IEP meeting. If the child has made significant progress since the last evaluation, the treatment, placement and therapy recommendations may no longer be applicable. A re-evaluation addressing all areas would become the basis for a more appropriate IEP.
Parents may suggest that professionals with knowledge of autism be present at the school for these evaluations. The school does not have to use the suggested professional, but may appreciate the assistance in finding a qualified person. As explained above, if the parents disagree with the school’s evaluation, they do have a right to acquire an independent evaluation.
The evaluation (school or independent) should become the basis for writing the child’s IEP. The IEP must be prepared and agreed upon before placement decisions are made, rather than written after the fact to fit the placement decision.