ABA Resources for Recovery from Autism/PDD/Hyperlexia

I am the father of a school-age child who has autism. This is a collection of Internet and other resources which parents of children with PDD, PDD-NOS, autism, Asperger's Syndrome, or hyperlexia may find useful. All the information concerns teaching methods that are a branch of  applied behavior analysis (ABA) called behavioral intervention. One of the methods is discrete trial training. Some (inaccurately) use the term "Lovaas method."

We worked hard to get complete information, implement a program, and have our school system pay for it. My hope is to help spare other parents (and their children) some of the pain and wasted time we went through, and to provide resources for professionals who are passionate about special education. Here is what I've learned.

Please also see the frequently asked questions about ABA and autism, and, if you are new to special education, my "form letter." If you don't find the information you need here, I will try to help you find resources. I cannot give specific advice about your child's behavior or education. If you write, please tell me where you live. ABA in the subject field will ensure your message is not deleted as junk or spam.
    RichardSaffran@hotmail.com

Research and experience: Why use ABA (behavioral intervention)?

When choosing a program for your child, look from results backward, not theory forward. Start by understanding what works for others and what might work for your child. See also my answer to What is ABA?

Other parents' experiences and opinions

When I started this site in 1997 there were perhaps a dozen schools in the world using behavioral intervention for autism. Now there are well over ten times that number, many of them started by parents. Because it works, people have written books, published articles, and created Web sites.

See also my compilation of parents' experiences.

Peer-reviewed research

The first research on intensive behavioral intervention for early childhood autism started in the early 1980s; the first study showing its full effectiveness was published in 1987.

While researchers had initially hoped for substantial progress, what they achieved was remarkable: by early elementary school, a substantial fraction of children no longer needed any special assistance. The remarkable results continue to be duplicated almost a generation later.

Other articles and discussions

Read more accounts of the effectiveness of behavioral intervention.

Opposing views

Beware any type of program that doesn't admit to uncertainty or tolerate questions! Read why some have decided not to use ABA and be sure you have settled your own questions before deciding what to do with your own child.

Service providers, schools, and other families and support groups

Whether you set up an educational program in your home or send your child to a public or private shool, you will want to know where to find support and professional resources.

Service providers (ABA consultants) listings

The ABA service provider page lists individuals and agencies who can help you plan and run a behavioral intervention progam. Before you commit to any plan, please make sure you know about the service provider's qualifications.

School listings

For most people it's ideal if they can send their child to a school that is going to make the best possible use of their child's time, and also provide training and support to help your family life. Start with the listing of schools claiming to use ABA as a primary intervention, and also talk with other local families who have investigated the same options.

Your best information source will be other parents

It can make a critical difference to find a local family to help you through the many difficult times. See also the international section, and the parents' stories - you are neither the first nor the last in this situation.

Autism, special needs, and special education support groups

If you are lucky, there will be an organized support group that will help you find local families and other useful resources.

Behavioral intervention (ABA) support groups, organizations, mail lists, and parent training

Some of these ABA support organizations may offer funding or other support for behavioral intervention programs. See also the international resources links.

Principles of Applied Behavior Analysis

It is very helpful to know the basic principles. This doesn't mean you will do it all yourself! I strongly recommend finding a qualified professional to supervise your child's educational program.

See also the "how to" resource listings for more detailed information on educational programming. The training page lists degree programs, training programs, and on-line or distance learning programs.

Developmental evaluation and childhood screening

Get professional input - always helpful, and necessary if you plan to use special education services

A complete developmental evaluation is essential if you suspect your child has autism or a related disorder. You may get a diagnosis, and more important, recommendations for intervention. If the evaluator indicates an ABA program is appropriate, that opinion may be critical to your child's future. Waiting lists for the most helpful professionals can be very long, so make an appointment right away!

Resources for starting and running an ABA program

Plan a quality intervention program - worth knowing how to do even if you find a school that does it all.

Books and information

The listing of books and other information on ABA has books for parents who just need to know the basics, and more detailed textbooks used by professionals.

Language

Much of the early stages of an ABA program focuses on spoken language development.

Social and play skills

Developing social and play skills is another constant prioroty. It's not just fun and games; learning by interacting with other people is actually more important than classroom learning.

Academic

Reading, writing, arithmetic...until your child is ready to learn in a class, here are some ways to develop those skills using ABA.

Unwanted behaviors

While as much as possible the emphasis is on skill development, it's important to know how to deal with unwanted behaviors that interfere with progress or may even be dangerous to your child's health.

Recreation

Adequate time for physical play is essential to anybody's well-being. Here are some listings of recreational opportunities adapted to those with special needs.

Materials and software

Flashcards, workbooks, laminated pictures, software to organize your curriculum...all the props and aids you might need to run an educational program. Many of the businesses listed have been started by the Mom or Dad of a child on the autism spectrum.

Conferences

Conferences and meetings devoted to behavioral intervention for autism; see what the experts are learning.

Funding your child's program

Getting services is usually the hardest part. We in the US may argue forever about universal health care, but this is one disorder for which universal, free coverage is mandated - in theory.

If all this is new to you, or you feel like you are drowning in options, and you really want to know where to start, please look at my "form letter" to parents - How do I get services for my child?

Special education attorneys, advocates, and educational consultants listings

Listings of educational advocates and special education attorneys: an advocate helps you make the most efficient use of the special education process (get it right the first time!); an attorney represents your child in a legal dispute with your school system or early intervention administration.

Health insurance, Medicaid

If the services offered by your school system are not adequate to get your child the services he needs, it may be possible to receive funding from private or public health insurance.

Families' experiences with school districts

The most important strategy is to network with local parents. Special education advocates and attorneys are another great source of information about which districts to seek and which to avoid. Many families move to get even minimal services, but you don't want to do this more than once!

• Special Education Support lists many USA state and local support organizations
• State Department of Education Documents on Autism might help you predict what type of services will be offered for your child (some USA states and Canadian provinces)

Special education (early intervention, schools, Individualized Education Programs)

US law gives all children, regardless of their disability, the right to a free, appropriate public education in the least restrictive environment. many other countries have similar laws. Services may start well before your child reaches school age, and continue as needed until age 22.

Unless you plan no paying for everything yourself, it is essential that you know your countrie's and state's special education laws inside and out. The listingsinclude a number of very parent-friendly books and Web sites that will give you the information you need to enforce your child's rights and help secure him the best future possible.

Legal and advocacy information

See also listings of special education attorneys and advocates. Ask your elected representatives to help you find resources or overcome bureaucratic obstacles - they are supposed to work for you.

Managing a home-based program

Some service providers will supply teaching staff, but often recruiting, training, supervising, and retaining qualified staff is a job unto itself. If you are doing any teaching hours at home, here are some suggestions and resources for locating staff and running a home-based program.

International (non-English language)

Information on ABA in as many different languages as I can find.

Other autism resources

My Web site focuses only on behavioral intervention. Here are just a few good starting places to find the many other autism resources you may need.

Editorial

We first brought our child's deficits to the attention of a pediatrician at age 1-1/2. From that point it was three years before we started an effective therapy program. The pediatrician's attitude was "wait and see"; from age 3, the Brookline/Newton school administration attitude was "we're giving him everything he needs, trust us and be grateful." Both attitudes were a disaster for our child. Research shows that children with developmental disorders can be substantially helped by early, intensive intervention, yet the school's response to what I consider a medical emergency was two sessions of group "speech therapy" a week! It took "intensive legal intervention" to change that situation.

Our son, fortunately, is very smart - he learned the alphabet by age two, and could add double digit numbers at age five. He is also quite disabled and requires intensive one-on-one teaching to learn language, play, and social skills. But learn he did - after the first 1,000 hours of behavioral intervention he was able to make up stories, play for prolonged periods with his younger sister, spontaneously talk to friends and strangers, and successfully attend a public Kindergarten.

I have talked and written to a lot of other parents. All are committed to helping their children, but many are uncertain, uninformed, or have misconceptions about ABA or their child's potential for progress. I have made up what I call (for lack of a better term) "Richard's Rule" for recovery. Draw a graph with "Degree of disability" along the bottom and "Total progress" along the side. Then draw an arch. On the right hand side are the profoundly disabled children, who may make little progress despite their parents' exhaustive efforts. In the middle are those children with moderate to severe disability, who exhibit strong early symptoms. Because they often get timely diagnoses and early intervention, they may make the most progress towards their maximum potential.

On the left hand side are children like my son, who may be well behind in language and play skills but are quite intelligent, able to communicate their needs, and well-related to their parents. Unfortunately their strengths may also be their undoing, as they are the least likely to get early diagnoses and maximally effective intervention. Although some children do make substantial progress without intensive early intervention, they may still suffer years of needless disability.

Please don't underestimate:

1. The degree of your child's disability
2. His or her potential to make progress
3. The quantity and quality of skilled intervention required to make that progress

Other editorials