This is a post by Lindsay Naeder, Autism Speaks' Director of the Autism Response Team.
For a parent of a newly diagnosed child with autism, the jargon and terminology our community uses can be complicated and confusing, to say the least. There seems to be a never ending list of acronyms that stand for laws, types of service providers, agencies and even diagnoses!
However there are a few basic acronyms that once you get the hang of, can be the key to becoming a stronger advocate for your child. Mention ‘FAPE’ or ‘LRE’ at the right moment during a meeting at your child’s school and you may see a shift take place before your eyes. Suddenly, you notice folks at the table are paying attention and it seems your requests are being taken more seriously.
can this be true? Can certain things begin to fall into place just because you brought up an ingredient in Autism Alphabet Soup? For many, it is true that respectfully stating that you know your child’s rights can be a game changer.
Here are 10 of the basic ingredients in the ‘Alphabet Soup’ of autism that can help you be a better advocate:
ASD: Autism Spectrum Disorder
This one may seem pretty straight forward, but I am including it as a reminder that no two people with autism are the same, in spite of sharing the same diagnosis. Like everyone else, each individual with autism has his or her own unique strengths and challenges. Some of the following acronyms I will mention exist specifically to meet the needs of the great diversity of the autism spectrum.
EI: Early Intervention
If your child is under the age of three and you have concerns about his or her development, you can contact your state’s Early Intervention office for a free evaluation. Early Intervention will assign someone to work with you and your child through the evaluation and assessment process. If necessary, this person will coordinate EI services to help meet your child’s developmental needs. You can find the contact information for your state's department of Early Intervention Services here and read more about EI in our First Concerns to Action Tool Kit.
IFSP: Individual Family Service Plan
EI services can vary widely from state to state and region to region. However, the services should address a child's unique needs rather than being limited to what is currently available in your area. The IFSP spells out a child's needs and the services that will be provided and should describe the child's current abilities, services to be delivered and the anticipated goals. Click here to read more about IFSPs on our legal rights page.
IDEA: Individuals with Disabilities Education Act
IDEA is a federal law that mandates a public education for all children who need special education. It makes the schools responsible for providing the supports and services that will allow this to happen. IDEA specifies that children with various disabilities, including autism, are entitled to both early intervention services and special education services. Click to read more from a team of lawyers in “Your Child’s Rights.”
IEP: Individualized Education Program
Special education services pick up where early intervention services leave off, at age 3. Your local school district provides these services through the special education department. The document that spells out your child's needs and how these needs will be met is the Individualized Education Program (IEP). The IEP describes your child's strengths and weaknesses, sets goals and objectives, and details how these can be met. For Special Education Services, if your child is three or older, contact your local Office of Special Education within the school district. Check out our IEP Guide and School Community Tool Kit for more information!
FAPE: Free and Appropriate Public Education
IDEA law mandates that the state provide an eligible child with a free appropriate public education that meets his or her unique individual needs. Each word in the phrase is important, but “appropriate” is the one that relates specifically to your special needs child. Your child is entitled to an education that is tailored to his or her special needs and a placement that will allow them to make educational progress. Remember, this is a collaborative process and may require considerable negotiation in order to secure the appropriate services from the school. Check out more about ‘FAPE’ in the “Getting Your Child Services” section of our 100 Day Kit.
LRE: Least Restrictive Environment
This is an important phrase to know when advocating for your child’s educational setting needs. IDEA provides that your child with autism is entitled to experience the “least restrictive environment” in schools. This means the school district is required to educate a student with a disability in classrooms, with non-disabled peers to the maximum extent appropriate, and supported with the aids and services required to make this possible. Careful planning and training are essential to providing changes or accommodations, and to successfully situating a child with autism in the least restrictive setting. Keep in mind placements to meet your child’s need may change over time! Read more about successful building your child’s and your own advocacy skills in our Advocacy Tool Kit!
ABA: Applied Behavior Analysis
ABA is a set of principles that form the basis for many behavioral treatments for autism. ABA is based on the science of learning and behavior and the use of these principles to bring about meaningful and positive change in behavior. ABA is an evidence-based best practice treatment by the American Psychological Association. Always check credentials of those who claim to be qualified in behavior analysis. Read more about ABA in our Parent's Guide to Applied Behavior Analysis.
PECS: Picture Exchange Communication System
Strengthening communication skills is critical for self-advocacy and independence! PECS is a learning and communication system that allows children with little or no spoken language to communicate using pictures. PECS can be used at home, in the classroom or in a variety of other settings and is very affordable! A therapist, teacher or parent helps the child to build a vocabulary, and to articulate desires, observations or feelings by using pictures consistently. Click here to read more about PECS.
ART: Autism Response Team
One of my favorite autism acronyms! If you have questions about autism or are looking for resources, tools or information, ART is here to help! ART members are specially trained to connect individuals with autism and their families with resources to meet your needs. You can reach the Autism Response Team by email at email@example.com, or by phone at (888) 288-4762, en Español (888) 772-9050.
There are many more than these 10 basic autism acronyms out there. Don’t be afraid to ask what an acronym stands for that you don’t recognize. Nine times out of ten you are not the only parent wondering!
Changes can happen quickly, service names may vary from state to state, agencies are renamed, yet your child’s need for services and supports will continue. Once you learn the name of the acronym, it is important to educate yourself about what it means and be prepared to present your requests for services based on your child’s needs. It will help if your requests are documented in evaluations and supported by data from therapists or doctors.
Part of being a great advocate will always be asking questions and continuing to learn!