NEW PARENT INFORMATION PACKET

Who is this booklet for?
This parent packet was created to help guide parents of children recently
diagnosed with Autism Spectrum Disorder and for parents who have questions
concerning their child’s development both in the United States and abroad.
The initial diagnosis process can be overwhelming, and this packet is primarily
for children between ages birth through seven years.

What does this booklet include?
Step 1: Is My Child on the Autism Spectrum?
Step 2: Who Could Diagnose My Child?
Step 3: What is the Best Treatment for Autism?
Step 4: How Do I Find and Pay for Treatment?

Step 5: What Does the Future Hold for My Child and Our Family?

Step 1: Is My Child on the Autism Spectrum?
Use the following parent-administered screening tool, the Modified CHecklist for Autism in Toddlers (the M­CHAT) in the privacy of your own
home. Screening simply indicates whether there may be an issue that needs further examination. Resist jumping to conclusions at this stage. The
results from the M­CHAT let you know whether to proceed to Step 2 below. The M­CHAT can be accessed through the ASAT website — Click Here.

For more information

Step 2: Who Could Diagnose My Child?
Autism can be diagnosed by several different types of professionals1. In many countries, psychologists, psychiatrists and pediatricians arelicensed to diagnose children with autism. It is important for you to find the appropriate professional who is knowledgeable about autism.
The best resource to recommend a diagnostician may be parents of children with autism in your area.

For more information

Step 3: What is the Best Treatment for Autism?
Here at ASAT, we critically evaluate any and all new purported treatments for autism. Today, the only scientifically supported treatment for
Autism Spectrum Disorder (ASD) is Early Intensive Behavioral Treatment (EIBT), and Intensive Behavioral Treatment (IBT), based on the principles
of Applied Behavioral Analysis (ABA).
In short, your child needs to start an intensive ABA Program as soon as possible.
Although there are over 500 unsubstantiated treatments for autism, beware of personal testimonials claiming to cure or treat your child. Your
child’s time and your money are too valuable to waste. These treatments have not yet been scientifically validated either by the people who
introduced the treatment or by the scientific community. In other words, there is no evidence that they work.

For more information

Step 4: How Do I Find and Pay for Treatment?
Internationally, funding for autism treatment is different in every country. In very few countries, parents have already fought and won the battle
for treatment funding either through the health-care system, the educational system, and/or the social welfare system. It is very important thatyou find the status of autism treatment funding in your country. The best way to do that is to network with parents who already provide
ABA treatment programs for their children and connect with your country's professional ABA associations. If you are in a country where there
is no funding for treatment, you may find yourself having to advocate for treatment for your child.

For more information

Step 5: What Does the Future Hold for My Child and Our Family?
No matter where you and your child are right now, when you start effective treatment, your child’s capabilities will be much improved, and you
will feel much more in control and empowered.
When working with a qualified behavioral consultant, you will set up, implement, and maintain an individualized treatment program for yourchild. This will provide you with essential tools. In fact, you will eventually become the expert on your child’s behavior and know how yourchild learns best. At that point, you will become very knowledgeable about how to treat your child’s autism and be in a better position to makeimportant decisions about your child’s education and future independence.

For more information

1

In the United States, your child’s public school may decide on an educational classification of Autism. This is not the same as a formal diagnosis from a
professional in the community. The school’s classification is for planning purposes, allowing selection of special education services that are commonly helpful
to learners with ASD and ASD-like needs. Even if your child has an educational classification of Autism, be sure to pursue a formal diagnostic evaluation froma professional in the community. The formal evaluation will establish or rule out whether a diagnosis of ASD is appropriate.

Is My Child on the Autism Spectrum?
The fact that you are looking into whether your child is developing on a
typical timeline indicates that you or others around you may be seeing
signs of developmental differences.
Either way, there are concerns about your child’s development, e.g.,language, play skills, social interaction, eating habits, repetitive behaviors,
toileting skills.
Although children do develop at different rates, if you are receiving thiskind of feedback or have any concerns of your own, it is paramount to yourchild’s well­being to check whether there is anything to these queries.
To get answers to these questions, take the Modified CHecklist for Autism
in Toddlers (the M­CHAT) in the privacy of your own home. This free
screening tool takes 3 min (20 questions to answer) and provides instantscoring through the computer. If you want the screening without signingup through the website, we encourage you to download the print version
and score it with the straightforward instructions included. Be honest:
if you are not 100% sure of an answer, it is critical to ask your spouse, a trusted family member who knows your child well, yourchild’s caregiver, or preschool teacher. You need accurate answers to ensure that the screening tool is effective.
Time is of the essence: An inaccurate screening result will only delay critical treatment that your child needs and deserves.

PLEASE NOTE:This is simply a screening tool that will tell you whether it is a good idea to visit a professional to have your child assessed,
and when appropriate, diagnosed. Remember, screening is not a substitute for a diagnostic assessment by a professional.

Selected additional resources:
What Is Autism?
This Your Child Has Autism? Screen Your ChildIs Autism on the Rise?
What We Know about the Causes of Autism
Discussing Concerns with Family Members
What is the Relationship Between Autism Spectrum Disorders and Intellectual Disability?
DSM­5 Autism Spectrum DisorderWho Could Diagnose My Child?
Why does time matter?
Why is a timely diagnosis so important?
The sooner you get your child diagnosed, the sooner you can set up
a treatment program for your child.

A young child’s brain develops quickly; there is strong evidence thatearly intensive treatment re­routes the neurologic pathways.
For your child to reach their fullest potential, the earlier you receive
the diagnosis, the sooner you can start science-based treatment.
Who can make a diagnosis in your country? Depending upon jurisdiction,
the place to get a diagnosis may vary. Although pediatricians andpsychologists world­wide have the credentials to make a diagnosis,
in many countries there are special diagnostic clinics where a healthcare
system may cover the costs. If you are not required to use a special clinic,
then make an appointment with any professional in your area with a good reputation for autism expertise.
Remember, time is of the essence. Do not accept the advice of, “Give it some time,” or “Wait and see what happens before youact.” Parents and professionals alike would encourage you to find a professional as soon as you have concerns.

What if you encounter a long wait list, which is a common issue in some countries?
You have a few options:1) Offer to take a cancellation appointment, and explain the urgency of your situation in a respectful way
to the receptionist (i.e. gatekeeper). Emphasize the fact that you are very concerned about your child;
2) Pay for a diagnostic evaluation at a private psychological clinic, pediatrician’s office or multidisciplinary
diagnostic clinic;
3) Hire a qualified professional to start a science-based treatment program in your home while on the wait list
for a diagnostic evaluation. To find a qualified treatment professional, see Step 3 below.

Selected additional resources:
Autism Diagnosis
CDC’s “Learn the Signs. Act Early.”
Why is early detection so important?
Resources for Parents
A Review of Autism: Start Here, What Families Need to Know (3rd edition)

What is the Best Treatment for Autism?
(Page 1/4)

What is scientifically supported treatment?
When we speak of treatment, we are not talking about a pill or type ofdigestible medicine.
Treatment for autism is an intervention performed by a therapy team that
implements programs specifically designed to address your child’s needs,
e.g., language, behavior, socialization, self-help, safety, attention.
Data is taken every step of the way so that your child’s progress isobjectively measured, and the program is modified as needed toincrease effectiveness.

What is Applied Behavior Analysis?
The term applied behavior analysis (ABA) is used extensively in autism
treatment. ABA refers to the field of behaviorism as applied to humanbeings. When used with children with autism, it refers to a tool chest of
behavioral techniques and strategies to teach your child all the skills needed to reach their full potential.

What is Intensive Behavioral Treatment?
Intensive Behavioral Treatment (IBT) also referred to as Early Intensive Behavioral Treatment (EIBT) or Early Intensive
Behavioral Intervention (EIBI) is a technique pioneered in the 1970s.
In 1987, a landmark study was published on Intensive, one-on-one treatment based on a treatment protocol designed by UCLA
psychologist Dr. Ivar Lovaas. Since that original study was published, there have been over a dozen replications from researchsites all over the world. Research from these replication sites is peer reviewed and published in scientific journals. Thesestudies provide overwhelming evidence as to the efficacy of IBT, EIBT, and intensive ABA for the treatment of autism.
Today, these intensive behavioral treatment programs, based on an enormous amount of scientific research conducted withchildren with autism, are considered best practices for autism treatment. In 1997, the U.S. Surgeon General did an exhaustive
study of every single purported treatment for autism and agreed that Intensive Behavioral Treatment (IBT), based on theprinciples of Applied Behavior Analysis (ABA), is the singular most effective treatment for a child with autism.

What does treatment look like?
You and your family will be part of your child’s therapy team. If your child is very young, it is common for therapy to take placein your home. (In a few jurisdictions, there may be certified treatment centers for young children.). Although you will hire a con­sultant with expertise in IBT as applied to autism, you will be in charge of a team of therapists who will come to your home andwork one-on-one with your child. In countries fortunate to have health insurance coverage (i.e. the U.S.), often parents selectan ABA agency that becomes the treatment provider. Parents enter into participation agreements that give consent for treat­
ment. In this scenario, the therapists and the consultant work for the provider. Your family will be given the tools to help
your child as well so that when the therapists are gone for the day, you will be able to involve your child in your home,family, and community activities. In addition, program consistency, collaboration and ongoing communication between
therapists, home, family and school personnel will increase skill acquisition and decrease maladaptive behaviors
exhibited by your child. A home-based treatment program offering 40 hours a week including time spent at school
is recommended in order for your child to reach their full potential.

What is the Best Treatment for Autism?
(Page 2/4)

How can you provide treatment for your child?
Whether you choose to have your child participate in a home-based or school-based program, treatment programs should bedesigned by a behavioral consultant with expertise in autism. The programs are individualized and administered by a trained
therapy team. Some countries require that the behavior analyst be board certified. To find a behavior analyst or to verify theircredentials, visit the Behavior Analyst Certification Board.
To find a science-based treatment program in your area, take the following steps:
1) Ask your local autism parent support group for the top EIBT, IBT, or Intensive ABA providers;
2) Ask your pediatrician or diagnosing psychologist if they can recommend a few qualified treatment providers;
3) Go to the Behavior Analyst Certification Board and search by country, state and/or zip code. You are likely to find someone
with expertise in your country. If you are in the U.S., Canada or many European countries, you will likely find several qualified
people in your city or town.

What about other treatments?
There are over 500 purported treatments, most of which have no data supporting their effectiveness.
Other therapies have insufficient data and, therefore, cannot be recommended. We encourage you to explore the ASAT website
where we describe the state of the science with respect to these treatments (please see selected resources at the end of thissection).
Since setting up a program is time consuming, we recommend starting with evidence-based treatment interventions before
researching alternate treatments. We encourage you to explore the ASAT Treatment Summaries that are updated as new
evidence is published.

Common questions or worries that parents of a newly diagnosed child often have about
treatment:“I‘m worried that treatment won‘t help my child.”
Rest assured that the treatment program you set up for your child under the supervision of a professional behaviorist will becustomized to your child’s needs, and data will be taken each step of the way to ensure that the evidence-based intervention iscontributing to your child’s progression. A high quality treatment program is modified based on data collected.
“I‘m worried that I won‘t understand the treatment.”
There is a learning curve for everyone involved in your child’s treatment program. Fortunately, there are several excellent
publications and videos on evidence-based treatment for autism (please see our list of educational resources). In addition, talkto the qualified professional who is setting up and monitoring your child’s program. Every activity specifically designed for yourchild has a purpose, and a properly trained professional should be able to explain the purpose to you and your family. In
some communities, you can also reach out to local parent groups who have their children in home­based treatment pro­grams. Alternatively, there are many internet based parent groups. These parents are often able to help you under­
stand what the treatment should look like in a home­based program.

What is the Best Treatment for Autism?
(Page 3/4)

“I‘m worried that I can‘t afford to give my child the treatment he/she needs.”
This is a legitimate concern. We address the financial issues and solutions below in Step 4 of this New Parent Packet.
“Will my child become normal?”
The science demonstrates that the future development of a young child with autism cannot be accurately predicted due to avariety of factors such as the different rates at which children gain skills and the quality and intensity of the treatment plan.
Although parents and professionals recognize that children with autism progress at their own rate, several studies have charac­terized children’s response to treatment into three general groups. Research clearly demonstrates that a subset of children will
become indistinguishable from their peers. (Due to the state of the science, there is still debate as to whether the brain has
been rewired versus whether individuals gain skills that enable them to become indistinguishable.) That said, those indistin­
guishable children will be viewed as typically developing and may be able to live on their own and hold a job.
There is a second subset of children who maintain the diagnosis of autism. With quality intervention, they gain tremendous
independence and self-reliance and have a high quality of life. These children are taught to communicate and becomecompletely independent when it comes to self-help and daily living skills. In addition, with support, they become active
members of their community.
There is a third subset of children who will continue to acquire a variety of skills throughout adulthood. The treatment provides
them the skills they need to maintain a high quality of life in a supportive living environment with daily household
responsibilities, and participation in leisure activities in the community. With the goal of reaching additional independence, skill
acquisition is reinforced and new skills are taught. Communication skills are an ongoing focus of treatment so these individuals
can better communicate their needs and emotions (whether verbally or with an augmented communication system).
Although predictions as to the outcome of your child can not be made, choosing a science­based treatment will ensure yourchild will reach his or her full potential.
“I‘ve contacted a few providers who tell me that they will not work with my young child because she is over five yearsof age!”There are some providers who focus only on very young children (18 months to 5 years of age). These providers typically referchildren 5 years and older to providers who are more qualified to work with older children. Fortunately, there are many highly
qualified providers who accept children of all ages as clients. Please refer to the section in Step 3 that discusses how to accesstreatment for your child.

What is the Best Treatment for Autism?
(Page 4/4)

Selected additional resources
Frequently asked questions about ABA
Meta­Analysis of Early Intensive Behavioral Intervention for Children with Autism
ABA and Research, What ABA Can Do for Your Child
Early Intensive Behavioural Intervention or Treatment
Considerations When Hiring a Behavioral Service Provider
Explaining My Decision to Use Science­Based Treatment for Autism
Encouraging Parent Participation Home­Based Intervention
Systematic Review of Early Intensive Behavioral Interventions for Children with Autism—Rutgers University
The Real-World Effectiveness of Early Teaching Interventions for Children with Autism Spectrum Disorder
Identifying Applied Behavior Analysis Interventions
A Systematic Review of Early Intensive Intervention for Autism Spectrum Disorders
Change in Autism Core Symptoms with Intervention
Efficacy of Applied Behavioral Intervention in Preschool Children with Autism
A Comparative Look at School Based and Centre Based ABA Programs
Early Behavioral Intervention is Associated with Normalized Brain Activity in Young Children with Autism
Intervening in Infancy: Implications for Autism Spectrum Disorders

Frequently asked questions about treatment
Is There Science Behind That?
The Pitfalls of Testimonials
Learn More About Specific Treatments. What Works and What Doesn’t
Autism Spectrum Disorder: How Do We Measure Effectiveness?
Ethics and Evidence­based PracticeEvaluating Research
ASAT Supports Proven Treatments and Informed Choice
What is Evidence­Based Practice and Why Should We Care?
Pseudoscientific Therapies ­ Some Warning Signs
Science, Pseudoscience and Antiscience

NOTE: For detailed information about how to help your child during a pandemic, please visit ASATonline.org

How Do I Find and Pay for Treatment?
(Page 1/2)

How do I find the money to pay for treatment?
Is funding available?
Funding for treatment can be extremely challenging depending uponwhere you live. It is critical that you research immediately to find thestatus of funding available. (Possible sources include private or publichealth insurance, local school districts or councils, state or provincial
disability, social services, or family welfare agencies.) If you starta treatment program immediately, be prepared to use your personal
resources until you can access other monies. Consider talking to yourfamily about helping you to pay for treatment or become part of yourchild’s treatment team. Although it is wise to find a behavioral consultant
to design your child’s treatment plan, all the therapy hours can be
conducted by family members or volunteers who have been trained by the
consultant. The research indicates that a total of 40 hours a week for atreatment schedule is strongly recommended. The specific number of hours required will be determined by your consultant
based on the child’s needs.
Whether home-based and/or center-based, a treatment program targets the core characteristics of ASD through interventions
that focus on communication, social and play skills, self-help, and learning readiness skills.
The instructions are tailored for early learners using evidence-based interventions. Ultimately, the child will be transitioned into
the appropriate least restrictive environment (LRE) based on the child’s skills.
(Note: treatment is expensive due to the number of therapy hours, not simply the level of expertise of the consultant. Family
members may be trained to be part of the treatment team.)
To begin your online search for information about funding, it is helpful to contact the providers in your country using thefollowing search terms: name of your country and applied behavior analysis. In addition, network with parents in your area toeducate yourself about the availability of funding. There are many parent organizations that include the following words in theirname: treatment; ABA; early intervention; intensive behavioral treatment or intervention. Parent groups generally areknowledgeable about whether funding is available and how to access those resources.
Be aware, though, that some parent groups advocate for non­science based treatments and may not be educated in sciencebased treatments. If there are no parent organizations in your area doing science­based treatment, autism societies in yourcountry may provide you with names of parents who have their children in science-based treatment programs. In somecountries, ABA is not yet recognized as medically necessary. To do your due diligence, visit our list of treatment reviews.

How much does treatment cost?
Treatment costs vary from country to country depending on cost of living and level of expertise; however, due to the intensityof the treatment, it can be very expensive. To illustrate, in the United States and Canada, funding can be between 40 ­ 80
thousand dollars a year.

How Do I Find and Pay for Treatment?
(Page 2/2)

What if there is no funding in my country?
If you are in a country that has not yet understood the importance of providing treatment to children with autism, you are notalone. Tens of thousands of parents have been in your shoes. In fact, the reason that autism treatment is widely available in the
United States is due to thousands of courageous parents who fought for funding for their children. They used one of the two
strategies below:a) Lobbying
There are two kinds of lobbying: personal and group. To personally lobby for your child’s right to funding, it is important tohave your child’s paperwork and treatment team assembled. This includes the child’s diagnosis and the consultant’s
recommendations for treatment. Depending on the system in your area you may find yourself in meetings with social
services, school or medical service personnel. You may find yourself having to appeal to the highest levels of the bureaucracy.
You may even find yourself sitting across the desk from government leaders. It is critical to document every interaction whether
by email, phone, or in person.
Group lobbying is another strategy to convince the government to provide monies for treatment. In this scenario, parents
organize as a group and publicly advocate for funding. Whether this strategy will work is dependent on the political system
in your country. For models of group lobbying, some Families for Early Autism Treatment groups have useful information on
their websites.

b) Lawsuits
Some parents had little luck with their lobbying efforts and, therefore, turned to the courts. These parents sued theirgovernments at a variety of levels forcing health care systems, and/or school districts to fund their children’s treatment
programs. These parents availed themselves of the services of attorneys with expertise in disability law and were able tocreate legal precedents that are now used across their jurisdictions. If you are looking to sue your jurisdiction, it is critical tofind a lawyer 1) with expertise in litigation and 2) who is prepared to become an expert in disability law. See below for links
to helpful legal precedents worldwide and in the United States.

Selected additional resources:
Global Court Cases on Autism Treatment
A List of Important Statutes and Cases in Autism Litigation (on the Mayerson & Associates website)
Council of Parent Attorneys and Advocates, Inc. (COPAA)
Council for Exceptional Children (Policy and Advocacy)
Individuals with Disabilities Education Act (IDEA)
Wrightslaw (Advocacy for Children with Disabilities in the U.S.)
Advocating for Your Child
Encouraging Parent Participation in Home-Based Interventions
Video Examples of Effective Instructional Models

What Does the Future Holdfor My Child and Our Family?
How will autism impact our family life?
The diagnosis and subsequent treatment of a child with autism can cause considerable
stress on the family. The stress often comes from the high cost of treatment and theinordinate number of hours spent on one child. That’s why it is critical that families
carve out time where autism is not the center of their life. Many couples organize aweekly date night where discussing autism is not allowed. In addition, families attempt
to give the siblings opportunities that have nothing to do with autism. It is important toremember that your family does not exist solely to treat a child with autism. That’s why
respite from the intensive treatment program is a must if you want to keep your familystrong and intact.

What if we have different views on what to do with our child?
There are a variety of housing options for children with autism depending on the
country. Unfortunately, these housing arrangements are very rarely designed fortreatment. If you are lucky enough to be in a country with a network of ABA TeachingHomes, there is generally such a long waiting list that the child will become an adult before becoming eligible. The argument about where toplace a child is often irrelevant because the spaces are not available. It is critical that families are on the same page in terms of accessing
science­based treatment since it is a group project. If your spouse is not convinced, there are many resources on our website that will discuss
the science behind the treatment. Please see Step 3 above.

How will this impact our work life?
When you have a child in a treatment program, your career priorities may change. Whether one spouse can transition from full-time
employment to part-time employment to manage the treatment program, change careers, or power through this stage in life, there isconsiderable financial and career pressure. Interestingly, the careers of some parents have been positively affected by autism i.e. lawyers who
specialize in autism lawsuits or start businesses catering to parents of children with autism. In any case, families should be strategic in termsof career decisions. Understand though, that the first few years of a science­based program are often the most intense and time-consuming
for the parent.

Do you have any additional advice?
Keep calm. Your number one priority is to get treatment for your child. Don’t inherit tomorrow’s problems, since they may not occur. Talk to
your partner, your family and your friends. They may be part of the solution and involved in your child’s ABA treatment team. In fact, they canbe very helpful if you provide them with training. Once you see your child acquiring skills, the pressure on you regarding your child’s future
will decrease. Worry and heartache turn to joy when you see your child learning skills and becoming a functional part of the family.

Selected additional resources
Lifespan Resources from the Web
What are some adaptive skills for a young adult to gain independence?
Defining and Assessing Quality of Life as an Outcome for Adults with Autism
Develop Goals for the Future
Discussing Concerns with Family Members
Does ABA Work for Older Children?
Explaining Applied Behavior Analysis to Parents and Colleagues
How to Manage the Impact of Child with a Disability on Siblings
Preparation for Employment Success
Promoting Success in the Community
Research Synopses­Lifespan
Teaching children with autism to attend religious services