ABA Resources for Recovery from
Autism/PDD/HyperlexiaABA Resources for Recovery from
Autism/PDD/HyperlexiaI 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, and what I've found. The essentials of
starting a program for your child are marked 1
to 6.
means "start here."
Why don't the links work? When you click on a link it may appear in a different window. Move this window over or use your browser Window menu if you don't see a selected link show up.
1 Research 2 Principles of ABA 3 Support Groups and Mail Lists 4 Developmental Evaluation 5 Program Resources 6 Special Education What is ABA? Frequently Asked Questions How do I get help for my child? Service Providers Schools Attorneys and Advocates Professional Qualifications Medical Insurance International (non-English) Parents' Experiences Editorial Giving Surveys and Research Our Story Education and Employment
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
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Start by understanding what works for others and what might work for your child. 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 as many, including several started by parents.
When choosing a program for your child, remember to look from results backward, not theory forward. See also my compilation of parents' experiences.
The following books are available from Different Roads to Learning, (800)853-1057, and Pro-Ed, (800)897-3202. If you purchase from Amazon.com by "clicking" from this page a commission (about 6%) is donated to the Federation for Children with Special Needs.
Let Me Hear Your Voice
by Catherine Maurice. A very emotional
story of diagnosis and complete recovery in two siblings.
While the text is dramatic, the real story for me is in the Appendix -
a month by month description of the ABA curriculum and a child's
measurable progress. (Available in Hebrew, Russian, and German, Ich
würde euch so gern verstehen!) Buy it from Amazon.comWhile you're waiting for your books to arrive, read these success stories: A chance to be heard Pittsburgh PA ° Louise ° Intensive therapy... Seattle WA ° Tommy Anchorage AK ° Early help... Vancouver BC ° The Virginian-Pilot and The Ledger-Star Norfolk VA ° Recovered kids (a mail group) ° Jessica Minnesota ° All the King's Men: A Young Child's Journey Through Autism (long) ° Parents' delight UK ° Sam ° Daniel's Story Alberta ° Reagan ° Jake ° Lovaas Therapy ° L's Story Lombardy, Italy ° Leo New York City ° Intensive behavioral treatment for a toddler at high risk for autism ° Patient ratings of Lovaas therapy ° Model Demonstration Classroom Las Vegas NV ° Brent Woodall Foundation ° ABA Anyone? ° Autism treatment offers hope London ON ° Teddy ° Making the Grade Pennsylvania ° Zachary Hawaii ° Niranjan India ° Jonah ° Ethan °
Many Moms and Dads have published Web sites from their own experiences: ° John in Maine ° Cyndi in Massachusetts ° Theresa in Texas ° Evie in the UK ° Kathy and Calvin in Oregon ° Kim in Michigan ° Inside the Bubble in the UK ° Liz in Ontario ° Our Experience in the UK ° A Lucky Boy ° Blue Elephant in North Carolina ° Finding Addie in Maine ° Ashley in Connecticut ° Reality ABA ° Carol °
The New York State Department of Health Clinical Practice Guideline states, "It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as an important element of any intervention program for young children with autism." The Surgeon General of the USA reached a similar conclusion.
The courts frequently agree that ABA is the most appropriate intervention: Autism, PDD, Asperger's Syndrome ° Mr. X v. New York ° $133,000 settlement ° Digest of ABA-related appeals (long) ° British Columbia Supreme Court ° Amber Hawaii ° Ontario ruling ° Analysis of Henrico County School Board v. R.T. ° Schools failing children with disabilities °
There is nothing that can compare to seeing for yourself the remarkable progress a child can make:
Intensive Early Intervention using Behavior Therapy is No Longer Experimental, Eric Larsson, PhD (Microsoft Word)
And there's the bottom-line argument: Cost-benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism, by John W. Jacobson, James A. Mulick, and Gina Green
News stories about ABA and autism
Articles in other languages:
IDEA 2004 (the USA law governing special education) states "The term 'individualized education program' or 'IEP' means a written statement ... that includes ... a statement of the special education and related services and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child ...."
Applied Behavior Analysis from neurodiversity.com lists an extensive collection of opinions (both for and against ABA) and research studies, including a substantial number of links to documents by people who oppose the use of behavioral intervention. See also Ethical challenges to autism treatment.
Find support and resource contacts
It can make a critical difference to find a local family to be a mentor and help you through the many difficult times. See also school district listings, the international section, and the parents' stories - you are neither the first nor the last in this situation.
Parents
groups can help you find professionals, therapists,
attorneys, and more. A very well maintained list covering North America
(from FEAT
Sacramento).Some of these organizations may offer funding or other support for behavioral intervention programs. See also the international resources links.
The North Texas Autism Education Center, 2300 McDermott, Suite 200-178, Plano TX 75025-7016, (469)682-0350, info@lonestarlearningcenter.org
Learn basic principles. This doesn't mean you will do it 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.
Behavioral Intervention for Young Children
with Autism, edited by C. Maurice, G. Green, S.
Luce. A "how-to" manual on ABA, including research, curriculum,
teaching methods, and legal information. Available from Pro-Ed,
(800)897-3202, and Different Roads to Learning,
(800)853-1057. Buy it from Amazon.comGet professional input - always helpful, and essential 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!
Evaluations may be performed or diagnoses delivered by practitioners in many professions, including psychologists, psychiatrists, speech-language pathologists, pediatricians, neurologists, occupational therapists, even social workers and educational administrators! In my experience, the most reliable single source of complete and accurate information about your child is a clinical neuropsychologist. He may also observe and evaluate your child's current or proposed educational program--a service just as essential in securing the right program.
In the USA (and probably some other countries) you have the right to an independent evaluation (you select the evaluator) paid by the school system. The results must be considered by the special education team.
Not all professionals are aware of ABA, and some may have "philosophical" objections, so it is important to get referrals from other parents whose children have benefited from the recommendations of an evaluator. It may be especially important to get an evaluation from a professional who is not closely associated with any school system. Parents report again and again hearing "I can't really recommend a specific program like that for you because it would get me into trouble with the schools I work with." (At least some people are honest!)
Plan a quality program (worth knowing how to do even if you find a school that does it all). Resource listings are on a separate page:
| Books and information | Language | Social and play | Academic | Unwanted behaviors | Recreation | Materials and software | Conferences |
See also:
Get services - 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.
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"IDEA does not require that a school either maximize a student's potential or provide the best possible education at public expense… The goal is more to open the door… to handicapped children on appropriate terms than to guarantee any particular level of education once inside." [USA judge William Knox of the Western District of Missouri]
The
Special Ed Advocate Web site by Peter and Pamela Wright
includes very helpful articles on IEPs, and a guide to IDEA,
the USA special education regulations. See also their From
Emotions to Advocacy site for extensive resource listings.
Their books rate a unanimous "5 stars":
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.
The
Special Ed Advocate is Pete and Pam Wright, P. O. Box 1008,
Deltaville VA 23043, (804)257-0857, pwright@wrightslaw.com.
The words "gold mine" are an understatement--if you ever have or intend
to have any contact at all with public schools, you must read their
articles. Their Yellow Pages for Kids with Disabilities
is a directory of special education and disability resources by state.Some service providers will supply teaching staff, but often recruiting, training, supervising, and retaining qualified staff is a job unto itself. Here are some suggestions and resources for locating staff:
The sites listed here contain information on behavioral intervention:
The listing of service providers has links to service providers for selected related educational programs
Given the severity, frequency, and societal costs of autism, the level of medical research funding is trivial. Unfortunately for most of our kids, there is no proven "safe and effective" medical help. You will find numerous personal stories and unreviewed studies about interventions involving drugs, dietary additions or eliminations, vitamins, and hormones. Many writers ignore or underplay the possible harmful effects of an intervention, so be sure to get competent advice before starting any medical treatment on your child.
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:
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This document is rsaffran.tripod.com/aba.html, updated Monday, 23-Jun-2008 05:48:45 EDT
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