Reviewed by Kate McKenna, MEd, MSEd, BCBA, LBA and Chante Stoeckley, MEd, BCBA, LBA
Association for Science in Autism Treatment
Autism: Star Here
Since 1965, Autism New Jersey has worked to fulfill its mission of heightening autism awareness and providing up-to-date credible information to individuals with autism and their families. Autism: Start Here, What Families Need to Know is a guidebook written to provide an introduction and guide for parents of a child with autism. The way it is organized, beginning with Early Intervention (Birth to 3) and continuing through to services available for individuals ages 18-21, means that Autism: Start Here will be useful for families no matter what the age of their child.
The guidebook, which is published in Spanish and English, is both comprehensive, user friendly, and includes the following sections:
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- What is Autism and How is it Diagnosed
- Who’s Who in Autism Services
- Introduction to State and Local Services
- Evaluating Potential Treatments for Autism
- Applied Behavior Analysis
- What to Look for in a Special Education Program
What is Autism and How is it Diagnosed
A family who is wondering if their child has autism or has just gotten a diagnosis may have a lot of questions. The guide begins with an overview of the criteria for diagnosis of autism according to the DSM-5. It highlights the changes from the previous definition, and also provides a link to the complete diagnostic criteria on their website.
Next parents can find guidance on how autism is typically first identified and how to know whether they should be concerned about their child’s development. It includes important milestones, a list of red flags for parents to look for such as no babbling by 12 months, and a section describing “what these concerns actually look like”. That section describes how difficulty in social interactions, difficulty with communication, and unusual (restricted, repetitive) behaviors may be demonstrated.
There is an overwhelming amount of misinformation about the causes of autism available on the internet, and many of the inaccurate causes can cause guilt on the parent’s part or unsafe attempts at a cure (such as giving a child a bleach enema). This document shares the current understanding of the causes of autism, being an underlying genetic component with environmental triggers. Finally, it includes several resources where families can get more information.
Who’s Who in Autism Services
There is often a proliferation of professionals in a child’s life after they’ve been diagnosed with autism. Who’s Who in Autism Services provides a very brief overview of the roles of many of these professionals including Case Manager, Special Education Teacher, and Board Certified Behavior Analyst. A reader can follow links to learn more about each profession and get a referral list from Autism New Jersey.
Introduction to State and Local Services
While the first two sections of Autism: Start Here provides answers to the many questions concerned families may have when first receiving the diagnosis of autism, the third section, Introduction to State and Local Services, answers questions they don’t yet know they will need to ask. It contains important information about accessing special education services for individuals from birth to age 21 that will assist parents in understanding the process by which they can obtain help for their child.
Learning how to navigate the special education system in any state can be daunting and Autism: Start Here is an invaluable resource for families in New Jersey as they begin what can seem like an overwhelming process of arranging special education services for their children. Each section outlines eligibility requirements and provides the contact information or website for the lead governmental agency that manages service provision. A list of services available for each age range is included. An added bonus is the inclusion of the phone number to contact an Autism New Jersey staff member who can support the family in answering questions and directing them to appropriate governmental agencies and offices.
Although forewarned is forearmed may have originated as a reference to military battle, it is the case that advance knowledge helps one to be prepared in new situations. Autism: Start Here does an admirable job of arming readers with information about their legal rights under Federal and New Jersey state special education law and how those laws apply to receiving services in New Jersey. Providing links to state agencies and several publications that will provide families more detailed information about their legal rights, such as the New Jersey Early Intervention System Family Rights Handbook, contributes to Autism: Start Here’s value as a guidebook that parents can continue to use as a resource as their children grow up.
Evaluating Potential Treatments for Autism and Applied Behavior Analysis
After receiving a diagnosis of autism and beginning the process of working with state and local agencies to receive special education services for their child, parents will want information that will aid them in choosing an effective treatment program. Autism NJ recommends that parents opt for science-based treatment programs that have a proven record of effectiveness based on data and research. A link to the National Standards Project, an examination of the efficacy of possible treatments that was compiled by the National Autism Center, provides guidance for families and information about science-based treatment options.
Autism: Start Here makes a recommendation that parents consider Applied Behavior Analysis, as there is a long history of research that attests to its effectiveness in teaching new skills to individuals with autism and its success in responding to challenging behaviors. The guidebook provides multiple links and contact information to facilitate parents’ ability to gather information. One of the strengths of this section of the guidebook is the presentation of information on specific methods that are used by behavior therapists. These descriptions are written in a jargon-free, reader-friendly manner that communicates to parents that ABA is not just one teaching technique. This section stresses the importance of parental involvement and participation in an ABA program, as well as describing steps taken by behavior therapists to ensure that learning is fun and engaging. Additional information is provided in an ABA Fact Sheet that is available on the Autism New Jersey website.
Since parents that decide to seek ABA therapy for their children will need information about finding and evaluating a behavior therapist, important facts about the levels of certification awarded by the Behavior Analyst Certification Board (BACB) are provided (p.25). Links are included to the BACB and the Autism Special Interest Group of the Association for Behavior Analysis International (ABAI). Both organizations can provide parents with additional information about Applied Behavior Analysis.
What to Look for in a Special Education Program
Again, one of the strengths of the guidebook is that it provides families with the information they need to be effective advocates for their child. This section is an invaluable resource for parents. After a short description of the range of programs (least-to-most restrictive) that are available in New Jersey, the guidebook addresses parent concerns related to identifying a program that will best meet their child’s needs.
Parents are likely to visit multiple school programs and may feel ill equipped to assess them. Autism: Start Here provides a comprehensive two-page set of interview questions designed to be used when evaluating an educational program that they are considering for their child. The questions, in a pamphlet format convenient for use when observing potential schools, are also available online from the Autism New Jersey website. There is a separate list of questions to be used in selecting a potential treatment and interviewing and selecting a provider (p.32). This section also includes a glossary of special education terms that a parent is likely to encounter and a list of suggested reading materials.
In summary, Autism: Start Here is a comprehensive guidebook that provides critical information and resources for parents no matter what the age of their child. Autism: Start Here is written with the assumption that parents can be effective advocates for their children. By either using the contact information or the links provided in the guidebook, parents will be able to find information relating to the evaluation process, navigation of the special education system in New Jersey, and criterion to use to evaluate treatment options and any special education schools or programs they may be considering for their child.
Both the English and Spanish versions of Autism: Start Here are available here. Autism New Jersey also provides guides on a variety of topics, such as health insurance, respite care, and the transition from school-based to adult services. Also available on the website is a booklet written specifically for children in Kindergarten through 5th grade that would be helpful for siblings of individuals with autism.
For more information about Autism New Jersey, please visit their website and Facebook page.
Citation for this article:
McKenna, K., & Stoeckley, C. (2019). [Review of 3rd edition of the book Autism, start here: What families need to know, by Autism New Jersey]. Science in Autism Treatment, 16(8).
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