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RESOURCES FOR PARENTS OF CHILDREN WITH ASD - BCOE 

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RESOURCES FOR PARENTS OF CHILDREN WITH ASD - BCOE 

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ASAN November Newsletter Dear friend, As we've begun wrapping up the year, we're still hard at work here at ASAN! We've celebrated self-advocacy and looked back at the work we've done this year, and we've continued to work on the issues to come! Earlier this month, we celebrated ASAN's birthday at our 2023 ASAN Gala,...

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The Autistic Self Advocacy Network is a national grassroots disability rights organization run by and for Autistic Americans, advocating for systems change and ensuring that the voices of Autistic people are heard in policy debates and the halls of power. Our staff work to educate communities and improve public perceptions of autism. As a 501(c)(3)...

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ASAN October Newsletter Dear friend, It's the most boo-tiful time of year, but we're still fighting some of the scariest things our community deals with, like discriminatory health care systems, subminimum wage, and lack of supports. Here's what we've been working on this month. In September, the Department of Health and Human Services (HHS)...

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1. Empty Lecture Halls, No Fall Football, a Freshman-Only Campus: How Colleges Are Thinking Through Reopening Plans

2. Rating the Trendy Twitter Account That's Rating Everyone's Living Rooms

3. How to Grow Your Own Food, Even if You've Never Gardened

4. How I Knew It Was Over: Stories From After SARS, Ebola, Polio, and the 1918 Flu

Four years ago, Sesame Street introduced Julia, its first new Muppet in 10 years. At first only in an online picture book, and later the show itself, the character, an autistic 4-year-old girl, was shaped by a diverse group of autism advocates and researchers. Julia is sunshine-yellow and never without her beloved rabbit, Fluffster. She has fun with her good friends Elmo and Abby Cadabby, two of the most popular characters on Sesame Street. Julia was even featured on a float in last year's Macy's Thanksgiving Day Parade. She was a triumph of representation for people like me.

And now, Julia is being used to promote a resource that suggests parents of newly diagnosed autistic children go through the five stages of grief for their (still-living) child, among other regressive and dangerous narratives about autism.

I am autistic, like Julia. Instead of a childhood full of social rejection and isolation like mine, Julia's life modeled a better world, until very recently. Julia's difference is embraced by her friends. People go out of their way to understand and include her. I'm a little embarrassed to admit that the first time I heard " The Amazing Song," the show's anthem about autism, I cried. "We all can feel happy, we all can feel mad" doesn't sound revolutionary, but many still believe that autistic people don't feel at all.

The 100 Day Kit features a persistent narrative that having a child like me or Sesame Street 's Julia is like having a child who hasdied.

Crucially, one of the groups behind Julia was the Autistic Self Advocacy Network-the only national organization by and for autistic people in the United States. It was groundbreaking that Sesame Street told stories about an autistic person in consultation with actual autistic people. We are rarely the ones who tell our own stories, and most of the stories other people tell about us are sensational or just downright awful. Ironically, a felt puppet with a traffic-cone-orange nose is one of the most realistic, informed, and positive representations of autism to ever appear on television.

But now, the organization is no longer involved. ASAN's decision to break with Sesame Street this month might seem surprising at first glance, but it came on the heels of the show's baffling partnership with another group that's enduringly divisive among advocates: Autism Speaks.

Autism Speaks is behind the 100 Day Kit for Young Children, which describes itself as "a tool designed to help assist families of children recently diagnosed with autism during the critical period following an autism diagnosis." Autism can require a high degree of specialized support, and many parents don't adequately learn about their child's disabilities. The kit includes useful tools for advocating for a child's inclusive education and keeping appointments organized, for example. The problem is, it also weaves incredibly harmful information with useful information with little to no distinction.

ASAN decided to cut ties with Sesame Street after the show partnered with Autism Speaks for public service announcements that push the 100 Day Kit, over the former group's vehement objection.

At first, it might not be so obvious what's wrong with the partnership. When you watch the Autism Speaks ad spots in question, everything seems to be about acceptance. What's not to love about playing music with friends or promoting diversity in communication? Autism Speaks is one of the largest, most visible autism charities. What could possibly be wrong? It's only when you click through to the resource itself that things begin to get murky.

The ads encourage viewers to have their children screened for autism and points to a resource on the Autism Speaks website that declares, "For Julia's family, early screening made a lifetime of difference." The first and biggest link on the page is a test called the M-CHAT-R (Modified Checklist for Autism in Toddlers, Revised). It takes about two minutes and can be used to evaluate whether your child is keeping up with developmental milestones. This is relatively harmless-I and many other autistic adults feel that funding, and focus, on early diagnosis is disproportionate to the benefits and excessive, but it's hardly offensive. What happens if the test comes up positive, though? Then you get a link recommending the Autism Speaks 100 Day Kit for Young Children.

The 100 Day Kit features a persistent narrative that having a child like me or Sesame Street 's Julia is like having a child who has died. The kit even has an entire section outlining how parents may go through the Kübler-Ross stages of grief. Then there are smaller suggestions that children like me are a tragedy: In one parental anecdote, a mother complains about how a kid at her child's preschool who was diagnosed with leukemia is getting all the attention she deserves, as if having a child with cancer and a child with a developmental disability are at all comparable. For the record: Nobody has ever died of autism.

Elsewhere, the guide suggests a restrictive gluten-free, dairy-free diet for autistic children, which has no scientific support. This is listed alongside medically validated autism interventions like occupational therapy. (In an email, Autism Speaks said, "The 100 Day Kit is not intended to provide medical advice, but rather to provide general information about autism services to the community to help them make informed personal decisions.")

Autism Speaks, a longtime hotbed of controversy, currently asserts that it is not, in fact, searching for a cure for autism. Much fanfare was made last year when the word cure was removed from its mission statement. Cure research has become increasingly unpopular as neurodiversity, the branch of the disability rights movement pioneered by autistic self-advocates, has become mainstream. The 100 Days Guide for Young Children, on the other hand, says the exact opposite more than a dozen times. "Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism," the guide announces on its first page. "Great strides have been made and the current state of progress is a far cry from the time when parents were given no hope for their children." It's not hard to see why the Autistic Self Advocacy Network, an organization dedicated to acceptance and inclusion, was forced to cut ties with Sesame Street. As the group explained, infuriatingly, "Our contacts acknowledged that the Autism Speaks resources were harmful and portrayed autistic children in a negative light-yet they were unwilling to reverse course in their plans to promote them."

The way we talk about autism's impact on families matters. Julia is so refreshing because she is portrayed as a normal child-she plays, she has friends, she has a family. She is different in some ways; she has her difficulty tolerating loud noises, for example. But those differences are embraced by the people around her. The Autism Speaks PSAs promote a message diametrically opposed to the spirit and purpose of the character. I hope Sesame Workshop reconsiders its puzzling decision to promote harmful narratives about autism-after waiting so long for a character like her, autistic people like me deserve to love and embrace Julia in an uncomplicated way.

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Why Autism Advocates Are Suddenly Furious With Sesame Street

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Empty Lecture Halls, No Fall Football, a Freshman-Only Campus: How Colleges Are Thinking Through Reopening Plans Rating the Trendy Twitter Account That's Rating Everyone's Living Rooms How to Grow Your Own Food, Even if You've Never Gardened How I Knew It Was Over: Stories From After SARS, Ebola, Polio, and the 1918 Flu Four years ago, Sesame Street introduced Julia, its first new Muppet in 10 years.

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Come to CSUC's renowned Autism Symposium on Sept 20/21.

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Home " Professional Development

There continues to be an increase in children diagnosed with Autism Spectrum Disorder (ASD). Current CDC reports place the rate of children diagnosed with ASD in the US at 1:59, with occurrences across all racial, ethnic, and socioeconomic groups. Though there continues to be new theories about what causes ASD, there is still no scientifically proven cause or cure. As a growing population of adults with ASD continue to share their experiences, there is a growing trend of ASD acceptance and culture. The aim of this symposium is to bring a breadth of speakers and trainers from both inside and outside the North State to present on interventions, services and supports available for individuals with ASD and their families.

Plenary Session Speaker

Alex Plank

Alex Plank is the 33 year old autistic person behind WrongPlanet.net, the incredibly popular site for individuals with Asperger's Syndrome and Autism. Both Alex and Wrong Planet have been featured by CNN, The New York Times, The Washington Post, The Los Angeles Times, and Good Morning America. Wrong Planet has more than 100,000 registered members and its discussion forums contain millions of messages.

Alex graduated from George Mason University with a degree in Film and Video Studies. Alex's areas of interest and expertise include public speaking, the Internet, writing, directing, and filmmaking. Alex lives in Beverly Hills, California. Alex is also a consultant and actor on FX's hit series The Bridge.

Concurrent & General Sessions

CAPTAIN trainers will present on evidence-based practices, presenters from the UC Davis MIND Institute will speak on their current research, and on day two, autistic adult speakers will share research and best practices for families and others on the spectrum. Topics include:

* Employment for Autistic Adults in a Neurodiverse Workplace * Practicing Self-Determination in a Virtual Reality Social Skills Simulator * Social Narratives * Strengthening Parent-Teacher Relationships * Functional Communication Training * Fostering Acceptance and Self-care * Peer-Mentor Programs * Physical Activity and Autism * Program for the Education and Enrichment of Relational Skills (PEERS®) * North State Trajectory: A Comprehensive Strength-Based Program to Transition Youth on the Autism Spectrum * Financial Planning For Families with Special Needs Children * Preparing Students with Autism for Post-secondary Transition * Youth Outreach in Morse Communication

Conference Schedule

Friday, Sept. 20

7:30am

Check In & Coffee

8am

Welcome

8:15-9am

Autism Research Update by Dr. Jospehine Blagrave

9:15-10:45am

Concurrent Sessions

11am-12:30pm

Concurrent Sessions

Lunch on Your Own

1:45-3:15pm

Concurrent Sessions

3:30-4:30pm

Plenary Session Featuring Alex Plank

4:30-5:30pm

Reception & Vendor Fair

Saturday, Sept. 21

8-8:30am

Check In & Coffee

8:30-10am

Keynote Address: TBA

10:15-11:45am

Concurrent Sessions

Lunch & A Movie

1-2:30pm

Concurrent Sessions

2:45-4:15pm

Concurrent Sessions

4:30pm

Closing

Professional Development

Sessions for professionals on evidence-based practices will be delivered by CAPTAIN trainers. CAPTAIN, the California Autism Professional Training and Information Network, is a multiagency network developed to support the understanding and use of Evidence Based Practices for individuals affected by Autism Spectrum Disorder across the state. CAPTAIN is dedicated to providing statewide access to trainings and resources in Evidence Based Practices (EBPs) that are culturally sensitive, family centered, cost effective, and competency based.

Fees & Registration

The fee for the two-day event is $195.
The fee to attend a single day is $125.

Register up to 3 people at a time online if you wish to pay by credit card.

A 15% discount on two-day registrations is available for groups of 11 or more. All members of the group must register at the same time with a single payment. Discount available on 2-day registrations only.

For group discounts, or to pay by check or purchase order, use our group registration form or call 530-898-6105.

If you are a Far Northern Regional Center client, please obtain pre-approval from your Service Coordinator and then complete your registration using our FNRC online form.

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CSU, Chico Regional & Continuing Education

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Home " Professional Development There continues to be an increase in children diagnosed with Autism Spectrum Disorder (ASD). Current CDC reports place the rate of children diagnosed with ASD in the US at 1:59, with occurrences across all racial, ethnic, and socioeconomic groups.

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Educate the public about severe autism and related disorders, and how they require special attention and services.

Provide a platform for think tanks and serious discourse addressing gaps in policy and services.

Educate policy makers about the impact of legislation and policy on our vulnerable, growing, and often overshadowed population.

Promote research into therapeutics for, neurobiology of, and causes of severe forms of autism and related disabilities.

Promote acceptance and awareness of individuals, families, and caregivers affected by severe forms of autism by giving voice to their realities and needs.
See NCSA Guiding Principles

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Educate the public about severe autism and related disorders, and how they require special attention and services. Provide a platform for think tanks and serious discourse addressing gaps in policy and services. Educate policy makers about the impact of legislation and policy on our vulnerable, growing, and often overshadowed population.

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The Yellow Door | Chico, Ca - Autism Support for Raising Awareness

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The mission of The Yellow Door is to support to individuals with autism and their families while promoting student leadership and involvement in the Chico community.

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Our two-plus acre Park & Garden will be filled with learning activities for individuals of all abilities and ages. This new location will incorporate accessible park activities and education, with hands-on learning gardens.

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How will I deal with this diagnosis?

It's not easy to hear the news that your child has autism, and realize that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges.

How do you come to terms with the fact that your child has autism? How do you cope once you get over the initial shock? We aim to help you by providing regular features on topics ranging from how autism affects your family to day-to-day survival strategies.

You are never prepared for a diagnosis of autism. It is likely that you will experience a range of emotions.

It is painful to love so much, to want something so much, and not quite get it. You want your child to get better so much you may feel some of the stages commonly associated with grieving.

You may "revisit" these feelings from time to time in the future. Part of moving forward, is dealing with your own needs and emotions along the way.

Changing the course of your child's life with autism can be a very rewarding experience. You are making an enormous difference in his or her life.

To make it happen, you need to take care of yourself. Take a moment to answer these questions:

Where does your support and strength come from?

How are you really doing?

Do you need to cry? Complain? Scream?

Would you like some help but don't know who to ask?

Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.

Parents often fail to evaluate their own sources of strength, coping skills, or emotional attitudes.

You may be so busy meeting the needs of your child that you don't allow yourself time to relax, cry, or simply think. You may wait until you are so exhausted or stressed out that you can barely carry on before you consider your own needs. Reaching this point is bad for you and for your family.

You may feel that your child needs you right now, more than ever. Your "to do" list may be what is driving you forward right now. Or, you may feel completely overwhelmed and not know here to start.

There is no single way to cope. Each family is unique and deals with stressful situations differently. Getting your child started in treatment will help you feel better.

Acknowledging the emotional impact of autism and taking care of yourself during this stressful period will help prepare you for the challenges ahead.

Autism is a pervasive, multi-faceted disorder. It will not only change the way that you look at your child, it will change the way you look at the world. As some parents may tell you, you may be a better person for it.

The love and hope that you have for your child is probably stronger than you realize.

Here are some tips from parents who have experienced what you are going through:

Get going.

Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child, and take care of yourself so that you can keep going.

Ask for help.

Asking for help can be very difficult, especially at first. Don't hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or
cook dinner for your family one night so that you can spend the time learning: Can they pick a few things up for you at the store or do a load of laundry? Can they let other people know you are going through a difficult time and could use a hand?

Talk to someone.

Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. If you can't get out of the house, use the phone to call a friend. Link to Family Services

"At my support group I met a group of women who were juggling the same things I am. It felt so good not to feel like I was from another planet!"

Consider joining...

A support group. It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources for information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren't a "support group kind of person." For many parents in your situation, support groups provide valuable hope, comfort and encouragement.

Try to take a break.

If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it's possible, getting out to a movie, going shopping, or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that it will help you to be renewed for the things you need to do when you get back.
Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and deal with the stress in your life.

Consider keeping a journal.

Louise DeSalvo, in Writing as a Way of Healing, notes that studies have shown that "writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health," and positive behavioral changes. Some parents have found a journaling a helpful tool for keeping track of their children's progress, what's working and what isn't.

Be mindful of the time you spend on the Internet. The Internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.

Unfortunately, there is more information on the web than any of us have time to read in a lifetime. There may also be a lot of misinformation. Right now, while you are trying to make the most of every minute, keep an eye on the clock and frequently ask yourself these important questions:

Is what I'm reading right now very likely to be relevant to my child?

Is it new information?

Is it helpful?

Is it from a reliable source?

Sometimes, the time you spend on the Internet will be incredibly valuable. Other times, it may be better for you and your child if you use that time to take care of yourself.

Fifteen Tips for Your Family

As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members:

5 Tips for Parents

Learn to be the best advocate you can be for your child. Be informed. Take advantage
of all the services that are available to you in your community. You will meet practitioners and providers who can educate you and help you. You will gather great strength from the people you meet.

Don't push your feelings away. Talk about them. You may feel both ambivalent and angry. Those are emotions to be expected. It's OK to feel conflicting emotions. Try to direct your anger towards the disorder and not towards your loved ones. When you find yourself arguing with your spouse over an autism related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry.

Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse, and refrain from constantly talking about autism. Everyone in your family needs support, and to be happy despite the circumstances.

Appreciate the small victories your child may achieve. Love your child and take great pride in each small accomplishment. Focus on what they can do instead of making comparisons with a typically developing child. Love them for who they are rather than what they should be.

Get involved with the Autism community. Don't underestimate the power of "community". You may be the captain of your team, but you can't do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive.

5 Tips for Brothers & Sisters

Remember that you are not alone! Every family is confronted with life's challenges... and yes, autism is challenging... but, if you look closely, nearly everyone has something difficult to face in their families.

Be proud of your brother or sister. Learn to talk about autism and be open and comfortable describing the disorder to others. If you are comfortable with the topic...they will be comfortable too. If you are embarrassed by your brother or sister, your friends will sense this and it will make it awkward for them. If you talk openly to your friends about autism, they will become comfortable. But, like everyone else, sometimes you will love your brother or sister, and sometimes you will hate them. It's okay to feel your feelings. And, often it's easier when you have a professional counselor to help you understand them - someone special who is here just for you! Love your brother or sister the way they are.

While it is OK to be sad that you have a brother or sister affected by autism it doesn't help to be upset and angry for extended periods of time. Your anger doesn't change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings too.

Spend time with your Mom and Dad alone. Doing things together as a family with and without your brother or sister strengthens your family bond. It's OK for you to want alone time. Having a family member with autism can often be very time consuming, and attention grabbing. You need to feel important too. Remember, even if your brother or sister didn't have autism, you would still need alone time with Mom and Dad.

Find an activity you can do with your brother or sister. You will find it rewarding to connect with your brother or sister, even if it is just putting a simple puzzle together. No matter how impaired they may be, doing something together creates a closeness. They will look forward to these shared activities and greet you with a special smile.

5 Tips for Grandparents and Extended Family

Family members have a lot to offer. Each family member is able to offer the things they have learned to do best over time. Ask how you can be helpful to your family.

Your efforts will be appreciated whether it means taking care of the child so that the parents can go out to dinner, or raising money for the special school that helps your family's child. Organize a lunch, a theatre benefit, a carnival, or a card game. It will warm your family's hearts to know that you are pitching in to create support and closeness.

Seek out your own support. If you find yourself having a difficult time accepting and dealing with the fact that your loved one has autism, seek out your own support. Your family may not be able to provide you with that kind of support so you must be considerate and look elsewhere. In this way you can be stronger for them, helping with the many challenges they face.

Be open and honest about the disorder. The more you talk about the matter, the better you will feel. Your friends and family can become your support system...but only if you share your thoughts with them. It may be hard to talk about it at first, but as time goes on it will be easier. In the end your experience with autism will end up teaching you and your family profound life lessons.

Put judgment aside. Consider your family's feelings and be supportive. Respect the decisions they make for their child with autism. They are working very hard to explore and research all options, and are typically coming to well thought out conclusions. Try not to compare children (this goes for typically developing kids as well). Children with autism can be brought up to achieve their personal best.

Learn more about Autism. It affects people of all social and economic standing. There is promising research, with many possibilities for the future. Share that sense of hope with your family while educating yourself about the best ways to help manage this disorder.

Carve out special time for each child. You can enjoy special moments with both typically developing family members and the family member with autism. Yes, they may be different but both children look forward to spending time with you. Children with autism thrive on routines, so find one thing that you can do together that is structured, even if it is simply going to a park for fifteen minutes. If you go to the same park every week, chances are over time that activity will become easier and easier...it just takes time and patience. If you are having a difficult time trying to determine what you can do, ask your family. They will sincerely appreciate that you are making.

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It's not easy to hear the news that your child has autism, and realize that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges. How do you come to terms with the fact that your child has autism?

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Kodi Lee - A Song For You - Best Audio - America's Got Talent - Auditions 1 - May 28, 2019

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Family First Child Development and Autism Services Chico, California

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Family First Child Development and Autism Services Chico, California

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Chico, CA based company that provides information and resources for families in need of Autism Services and Developmental disabilities services.

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The Little League Challenger Division® was founded in 1989, and is Little League's adaptive baseball program for individuals with physical and intellectual challenges.

Any individual with a physical or intellectual challenge may participate. If an individual can participate in the traditional Little League Baseball or Softball program with reasonable accommodations they should do so. The Little League Challenger Division accommodates players ages 4 to 18; or up to age 22 if still enrolled in school. The Senior League Challenger Division accommodates players ages 15 and above (no maximum age).

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If you are interested in starting a Challenger Division, or finding a Challenger Division near you, please complete this short form. Once submitted, we will send you additional information.

Continue reading

The 2018 Challenger Exhibition Game at the Little League Baseball® World Series drew a packed crowd at Volunteer Stadium, an annual event that gives players with physical and mental disabilities a chance to play under the Williamsport spotlight. This year's participants were Hazleton Little League from the nearby Hazleton, Pa., and Highland Baseball Club Little [...]

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Little League Challenger Division® - Little League

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The Little League Challenger Division® was founded in 1989, and is Little League's adaptive baseball program for individuals with physical and intellectual challenges. Any individual with a physical or intellectual challenge may participate. If an individual can participate in the traditional Little League Baseball or Softball program with reasonable accommodations they should do so.

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American Academy of Child & Adolescent Psychiatry

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American Academy of Child & Adolescent Psychiatry

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Autism spectrum disorders affect as many as 1 in 150 American children. Types of autism include autistic disorder, pervasive developmental disorder, and Asperger’s syndrome.

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Autism Clinic - Department of Kinesiology - CSU, Chico

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The Autism Clinic is part of the Kinesiology Department in the College of Communication and Education at California State University, Chico. Nationwide, the prevalence of autism has exploded. It is estimated that 1 in 68 children in the United States has autism. Similar increases are recognized around the globe.

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AFIRM Modules are designed to help you learn the step-by-step process of planning for, using, and monitoring an evidence-based practice (EBP) with learners on the spectrum from birth to 22 years of age. Supplemental materials and handouts are available for download.

Download an overview of the Components of AFIRM to learn about modules, resources, and professional development options.

Visit the Learn with AFIRM section to find out more.

To learn more about the updated EBPs, check out the National Clearinghouse on Autism Evidence and Practice website.

Introduction to Autism

Selecting an Evidence-Based Practice

AFIRM for Paraprofessionals: Simulated E-Learning

These simulated learning modules include brief overviews, video examples, and activity-based scenarios to learn foundational EBPs.

Reinforcement: Introduction & Practice

Prompting: Introduction & Practice

Supporting Peer Interactions: Introduction & Practice

Time Delay: Introduction & Practice

Visual Cues: Introduction & Practice

AFIRM for Toddlers

AFIRM for Toddlers are a set a of modules developed in collaboration with the Early Childhood Technical Assistance Center for early interventionists working with toddlers, families, and early care providers.

AFIRM for Toddlers Introduction

Behavior Supports for Toddlers

Naturalistic Interventions in the Child Care Setting

Parent-Implemented Interventions in the Home Setting

Reinforcement

Prompting

Visual Supports

Available Evidence-Based Practice Modules

The National Clearinghouse on Autism Evidence and Practice (NCAEP) identified 28 EBPs based upon a systematic review. The EBP modules are designed to help you learn the step-by-step process for planning for, using, and monitoring an EBP with learners with autism from birth to 22 years of age.

Augmentative & Alternative Communication

Antecedent-Based Interventions

Ayres Sensory Integration®

Behavioral Momentum Intervention

Cognitive Behavioral Intervention

Direct Instruction

Differential Reinforcement

Discrete Trial Training

Exercise

Extinction

Functional Behavioral Assessment

Functional Communication Training

Modeling

Music-Mediated Intervention

Naturalistic Intervention

Peer-Mediated Instruction & Intervention

Parent-Implemented Intervention

Prompting

Reinforcement

Response Interruption/ Redirection

Self-Management

Social Narratives

Social Skills Training

Task Analysis

Technology-Aided Instruction & Intervention

Time Delay

Video Modeling

Visual Supports

Available Supplemental Modules

Several EBPs identified in the previous review (Wong et al., 2014) were recategorized or reclassified in the most recent review by the National Clearinghouse on Autism Evidence & Practice (see Steinbrenner et al., 2020, p. 30 for details). The four modules below will remain available for AFIRM users as supplemental materials:

Picture Exchange Communication System

Pivotal Response Training

Scripting

Structured Play Groups

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AFIRM Modules AFIRM Modules are designed to help you learn the step-by-step process of planning for, using, and monitoring an evidence-based practice (EBP) with learners on the spectrum from birth to 22 years of age. Supplemental materials and handouts are available for download.

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Everyone's story is different.

The experience of Autism is not one thing. It is many things. It's dreams, talents, relationships, victories, hurdles, and everything in between. The connection between those experiences is you.
You break the mold. No matter who you are, the person you are is infinite-and you are the only you there is.

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Autism Society Creating connections for the Autism community to live fully.

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Desperate for therapies, parents of kids on the spectrum are sinking thousands of dollars into footbaths, detoxifying diets, and psychics.

Daniel Hertzberg / Spectrum

When her daughter was diagnosed with autism in 2004, Ariane Zurcher threw herself into researching a condition she knew nothing about. Everything she read indicated a bleak future for Emma, then a toddler. It led Zurcher to believe Emma would never form deep relationships, and would probably lack empathy. She might have compulsive behaviors and meltdowns or try to harm herself. She might never speak or be toilet-trained, and, once Zurcher and her husband died, she might have to be institutionalized. Zurcher says she felt as though she were "descending into hell."

"I was desperate to save my daughter," says Zurcher. "We went to everybody. We tried everything."

She and her husband took Emma to neurologists, gastroenterologists, behavioral, speech and occupational therapists, nutritionists, naturopaths, a shaman and homoeopath, a craniosacral therapist, and a Qigong master. A developmental pediatrician-who didn't take insurance, charged at least $200 per visit and had a months-long waiting list-recommended they call a psychic in Europe; the psychic, ironically, refused payment because she didn't pick up a 'signal' from them. They tried dozens of treatments that claimed to have 'recovered' children with autism, including numerous vitamin supplements, topical ointments, restrictive diets, chelation, hyperbaric oxygen therapy, brain scans, a so-called detoxification system, and stem-cell therapy.

Zurcher is hardly alone in her pursuit for something-anything-that might alleviate symptoms of autism in her child. Up to 88 percent of boys and girls with autism in the United States receive some alternative treatment, according to various studies. Parents are enticed by alternative therapies that promise to do everything from improving social interactions to restoring speech. But there's no scientific evidence to support these purported benefits. Few of these therapies have been adequately tested for safety or efficacy, many come with a hefty price tag, and some are downright dangerous.

"Once you start down that road, it's hard to stop," says Zurcher. As each intervention failed to help-much less 'cure'-Emma, Zurcher searched for the next one, feeling a surge of hope with each new possibility. "The allure of that one magic thing was so strong," she says, "rational thinking was suspended again and again."
* * *
When it comes to alternative interventions, there's a seemingly endless array of diets, supplements, high-tech therapies and other options. This abundance is a reflection of both the huge spike in autism diagnoses in recent years and the lack of good treatment options.

Scientists have uncovered tantalizing clues about the underpinnings of autism, but those findings haven't translated into drugs to treat key aspects of the condition. "We do not have treatments that relate in any way to what causes autism spectrum disorder, or that really relate to what's happening in the brain," says Jeremy Veenstra-VanderWeele, a child and adolescent psychiatrist and associate professor of psychiatry at Columbia University. "There are no quick fixes."

The list of treatments with a solid evidence basis is short. Behavioral interventions for young children, which teach social skills through repetition and reward, have proved to be somewhat effective. The therapy is pricey, at up to $70,000 a year if insurance doesn't cover it, requires 20 or more hours per week, and does not help all children with autism. Many also undergo speech and occupational therapy, to the tune of $10,000 or so each year. On the pharmaceutical side, the U.S. Food and Drug Administration (FDA) has approved two drugs, risperidone and aripiprazole, to treat irritability in autism. The drugs are not approved to treat repetitive behavior or social deficits, and both have significant side effects, including weight gain, fatigue and anxiety.

Given those options, it's not surprising that parents seek out alternatives. They don't have to look far. Internet searches turn up treatments in troves, each one accompanied by anecdotes of children who improved or were even "cured." Facebook groups dedicated to unproven interventions are legion. Dozens are dedicated to alternative therapies in general; others focus on a specific treatment, such as marijuana or essential oils. And at massive conventions, sellers present what they call "breakthrough" treatments.

These unproven treatments do not come cheap, and some are harmful. There is zero evidence that chelation therapy (roughly $4,000 for 30 sessions)-which removes heavy metals and minerals from the body-helps people with autism, and it carries a risk of heart failure. Hyperbaric oxygen therapy (about $10,000 for 80 sessions), in which individuals inhale pure oxygen in a pressurized chamber, can bruise eardrums and cause sinus pain and seizures. Miracle Mineral Solution ($20 per bottle) is a chemical drink that turns into the same compound used to bleach textiles when mixed, as directed, with its citrus juice activator (an additional $20 per bottle). Side effects of ingesting the bleach (sodium chlorite) include nausea, vomiting, and kidney failure, according to Health Canada.

The FDA has warned a number of companies, including those selling treatments listed above, that they may face legal action if they continue making false or misleading claims about treating or curing autism. In May, LearningRx agreed to pay the U.S. Federal Trade Commission a $200,000 fine for making false and unsubstantiated claims that its "brain training" program (reportedly $2,500 and up) can improve cognitive symptoms of autism.

"It's a cottage industry of false hope," says Paul Offit, professor of pediatrics at the Children's Hospital of Philadelphia and author of " Autism's False Prophets," a book about dubious causes and cures. "To me, taking advantage of parents' desperate desire to do anything to help their children is the lowest form of quackery."

To an expert, dismissing pseudo-scientific alternatives or weighing the risks of potentially promising yet unproven treatments may be second nature. For parents, it's much more complicated.
* * *
Born in 2002, Emma grew into a rambunctious, social toddler who adored being around lots of people. When she started to speak, words often came out grouped together. "Chase me" was a near-constant demand.

When Emma was about 2-and-a-half, the family went on vacation to Cape Cod, Massachusetts, and spent time with two other families who had young children. Weeks before, Zurcher and her husband, Richard Long, had begun noticing Emma's language falling away. As the couple watched the gaggle of kids, Zurcher turned to Long.

"When was the last time Emma said 'chase me?'" she asked.

He paused. "When was the last time she said anything?" he said.

"That was the moment everything changed," recalls Zurcher. After they returned home to New York City, Emma was quickly diagnosed with autism. Zurcher stopped working as an art director at an ad agency to focus on Emma full-time.

"You're told there's this window to your help your child, and it's closing fast," she says. "You feel like if you don't hurry and try anything that might help, you're a negligent parent."

Emma was receiving behavioral and speech therapy, though neither seemed to help. She also suffered from gut problems. So Zurcher was encouraged when she found stories claiming that gluten-free, casein-free diets dramatically improve gastrointestinal (GI) issues, cognition and speech in some children with autism. Some parents reported remarkable improvements in their children's behavior.

Zurcher cleaned out the kitchen, placed the long list of off-limits foods on the counter, and introduced Emma to the diet. Emma refused nearly everything. Zurcher would bake until 2 a.m. testing out new recipes, to no avail. Emma's eye contact slightly improved-maybe. (Zurcher later realized it actually hadn't.) But after just three months, Emma had lost a "frightening" amount of weight. So Zurcher brought back everything she had cut out. Now, Emma wouldn't touch many foods she had loved before, including chicken, eggs and vegetables.

"We were worse off than before the diet," says Zurcher. But she was undeterred in her quest to combat Emma's autism: "I thought of it as a war."

The war lasted seven long years. During that time, Emma took more than a dozen plant extracts to help her gut issues. They didn't. Nor did a half-year of craniosacral therapy, a form of massage intended to relieve pain and pressure in the skull and the rest of the body. The Qigong master who promised to cure Emma by regulating her 'energy flow' was one of many who failed to deliver. Sticking detox pads to Emma's feet to supposedly draw toxins from her body as she slept made no difference. Brushing therapy to reduce her sensitivity to touch riled her up and disrupted her sleep. Auditory integration therapy, aimed at quelling her hypersensitivity to sound, didn't help or hurt.

Emma underwent one round of chelation before Zurcher and Long spoke to specialists at the Albert Einstein College of Medicine in the Bronx and learned the treatment is dangerous. (In fact, it had reportedly killed a child with autism.) They interrupted hyperbaric oxygen therapy-no improvement after a few sessions-to take her to Central America for stem-cell therapy. After making three trips and seeing no effects, a conversation with experts in the U.S. convinced them not to return. The experts told them how risky and invasive the approach was, says Zurcher. "They literally begged us to stop."

The couple didn't always agree. Zurcher was more intent on finding and trying treatments than Long was, and he was more skeptical. When she decided to try another diet in 2011, he said, "I'm not okay with this, but I'm not going to stop you," she recalls.

She had read that soy and spelt-two foods she hadn't cut out of Emma's diet before-were problematic. "I thought, I didn't do it right," she says. "Let me do it again." Under the guidance of a naturopath, Zurcher scoured farmers' markets for the right goat cheese. She ordered goose eggs from Minnesota. She baked homemade fruit leathers in the oven for 10 hours. Again, Emma refused most everything; she lost 15 percent of her body weight in six weeks. "I came across her facing the wall. She'd stuffed a piece of goat cheese in her pocket and was eating it like a wild animal," recalls Zurcher. "It was horrifying." She stopped the diet.

"For so long, I thought any treatment was better than doing nothing at all," Zurcher says. She'd had doubts about almost everything they'd tried, but she had pushed down her queasiness. Feeling perhaps greater despair than ever before, she began to seek out adults with autism. She hoped they might have insights that everyone who had tried to sell her something did not.

* * *

The tricky thing about unproven treatments is that they sound scientific.

Take, for example, single-photon emission computed tomography, or SPECT. For around $3,500, Amen Clinics -brain health centers named for founder and doctor Daniel G. Amen-will scan a child's brain to deliver an autism diagnosis and create targeted treatments. "We use brain SPECT scans plus clinical data to make diagnoses," says Amen, adding that the clinics have scanned more than 1,000 people with autism.

Autism experts interviewed for this story say these scans are far from-and may never be-ready for use to diagnose autism. Some say it's pretty much hocus-pocus. "These extremely expensive 'evaluations,' which are almost never covered by insurance, are best described as a scam perpetrated on families who are being preyed upon by false hopes," says Columbia's Veenstra-VanderWeele. Brain scans can't reveal autism, because researchers haven't yet definitively identified autism-specific brain activity patterns or structures. And scans certainly can't indicate which treatment would work.

For most parents, who have little understanding of how science is done, wading through claims made about alternative treatments can be befuddling. Even when someone knows to search PubMed, an online database of journal abstracts, she might not understand that obscure journals tend not to be taken seriously, and might not pick up on the difference between types of studies. A case report about a single child may be of purely scientific interest as an avenue for further investigation, for instance, whereas results from a rigorous randomized controlled clinical trial with a large number of participants can provide solid information on whether a treatment works.

What's more, media outlets often exaggerate the significance of findings. Take secretin, a peptide hormone that stimulates the secretion of digestive fluids from the pancreas. In the late 1990s, three children with autism were reported to improve dramatically after taking secretin. (The caveat is that this was an unblinded study-that is, the investigators were aware that all three children had received secretin and not a placebo.) Word spread, parents heard about it on the news, and demand for secretin skyrocketed. But more than a dozen subsequent double-blind studies -in which neither the families nor the researchers knew which participants were in the placebo arm-found no evidence of effectiveness.

"As a scientist, you can end up on the front page of the science section of The New York Times with a new link to autism, but not really know if it's causal," says Catherine Lord, a clinical psychologist who heads the Center for Autism and the Developing Brain at New York-Presbyterian Hospital in New York City. In other words, just because researchers find a connection between autism and a gene or some other factor does not mean that it causes the condition-or that blocking it can reverse the effects of autism. "I think it's probably very confusing for parents. So when someone says, 'I can take what that scientist said and make it meaningful for you right now,' that's incredibly appealing."

At the AutismOne conference in Chicago this year, more than 150 practitioners and company representatives pitched therapies to hundreds of attendees in talks modeled on scientific presentations. Several presentations focused on the gut microbiome, reflecting findings suggesting that disturbances to gut microorganisms cause the GI problems that plague many children with autism. At last year's conference, a physician called Zach Bush explained, using slides of the gut viewed through a microscope as visual aids, how his plant-derived mineral supplement, RESTORE ($49.95 for a one-month supply), strengthens cell membranes in the gut to keep toxins from leaking out. Bush told the parents in the audience that he was "excited to just be a piece of your puzzle" in the parents' quest to "rebirth that child into a state of health." The company did not respond to multiple requests for comment.

The microbiome connection is in fact under investigation by multiple respected research groups. One hypothesis being explored is that disruption to gut microorganisms causes a ' leaky gut ' that allows bacteria to escape into the body, altering brain function and contributing to autism behaviors.

But promises such as Bush's are way ahead of the research, says Ruth Ann Luna, director of medical metagenomics at the Texas Children's Microbiome Center in Houston. "Right now, we're trying to characterize the gut biome in kids with autism who have significant GI problems," she says. Doing so could help pave the way for treating people who have both autism and gut issues. This is an intriguing avenue of investigation, but RESTORE and probiotic drinks marketed as autism treatments aren't yet backed up by research.

An even more aggressive approach, says Luna, is parents doing fecal microbiota transplants at home-although the transplants are worth investigating in clinical trials, she says. These parents mix a stool sample from a neurotypical family member with saline, strain the concoction, and then give the resulting liquid via enema to a child with autism. Instructions are readily available on YouTube. "It's very experimental and certainly risky to do without the oversight of a physician," she says.

When unproven treatments target the same links to autism being explored in serious research, it's that much more difficult for parents to evaluate the claims. "These so-called 'experts' are so confident, and they sound so convincing," says Zurcher.

Someone searching for information on, say, toxins that might have a link to autism could come across the " IonCleanse by AMD for ASD" Facebook group, where more than 3,300 members exchange information about a footbath made by a company called AMD. "As children's bodies begin to detox, the systems that were energetically blocked or shut down can start to function normally again," the AMD website says.

"We don't claim to treat autism," says owner Neill Moroney, who estimates 1,000 to 1,100 people with autism have used the $1,995 footbath. Moroney says he would like to conduct a blinded trial with 30 children over 90 days to determine whether the gadget truly alleviates symptoms of autism. But he says the funding is difficult to find. "What I'm looking for is someone with the resources to give it the shot it deserves," he says.
* * *
Stem-cell therapy is getting that shot, with two trials underway in the U.S. In animal models, one type of stem cell has been shown to alleviate inflammation in several types of tissue, including that from the brain, bowel and bone. Postmortem studies of children with autism have revealed inflammation of brain tissue. Stem-cell therapy isn't approved in the U.S., but several foreign clinics offer it for around $10,000. Sarah Collins credits the adult stem cell injections her two children received in Panama City, Panama, with the "recovery" of her older son and improvement in her younger son, both of whom were diagnosed with autism. Her experience led her to co-found the " Stem-cell therapy for Autism " Facebook group. She says one reason parents might not want to take part in clinical trials in the U.S. is that their child might end up in the placebo arm of the trial. "They won't mess with that," Collins says. "They'll go right to Panama instead."

But experts say without knowing more about whether and how the therapy works, those are costly, potentially risky ventures. The overseas clinics offer "hope, not a proven treatment," says Emanuel DiCicco-Bloom, a child neurologist and neuroscientist at Rutgers Robert Wood Johnson Medical School in New Brunswick, New Jersey. DiCicco-Bloom's team is taking blood cells from children with autism and their unaffected siblings and converting them into stem cells. The team then turns those cells into neurons and studies them at different stages of development, in hopes of identifying the differences between the siblings. "We're seeing differences in the numbers of cells, kinds of cells, synapses, which suggests what might be contributing to autism," he says. "But at this point, it's not like we can say: 'You're missing these specific cells, let's put them back.'"

Stem-cell treatments could also be dangerous. Even though the clinic in Panama, for instance, states on its website that it tests for viruses and bacteria, "until a year ago, nobody would've looked for Zika," DiCicco-Bloom says.

Knowing the risks, Karen Shearer decided to try stem cells anyway. After all, she says, almost nothing has helped her 13-year-old daughter, Skye, who is nonverbal, cannot dress herself and wears a diaper. To cover Skye's first treatment in Tijuana, Mexico, in 2007, the family cashed in a life-insurance policy; Shearer says it "was probably a scam." Last year's $10,000 therapy in Panama, partly funded by a GoFundMe.com campaign, also failed. Then Shearer discovered a clinic in Cancun, Mexico, on Collins' Facebook group that infuses cells via lumbar puncture, which the clinic says ensures the cells reach the brain. The only improvement Shearer has seen is that Skye is no longer terrified of the swimming pool.

Once she pays off her $11,000 credit card debt from Cancun, Shearer knows what's next: the Plasticity Brain Centers, which claims to reconnect neural pathways after their proprietary diagnostic technology pinpoints "the exact brain functions that need treatment." Skye has tried other brain-related treatments, but this one, Shearer says, seems to take a different approach.

At this point, she says, her dream is that her daughter will dress herself and use the toilet. "Skye's getting older but still functioning like a 2-year-old, and I'm getting more desperate," she says. "How will I function 10 years from now? How will she?"
* * *
Given the dizzying profusion of alternative treatments, parents can find it a challenge to navigate the options and weigh the risks. A few websites provide parents with the right questions to ask: Does this practitioner or vendor promise miracles that no one else seems to achieve? Is the person promising the outcome also asking me for money? Do I find any scientific research supporting their claims, or are there only individual (often emotional) testimonials?

Many medical professionals may not take the time to talk through the potential risks or flaws of alternative therapies. But Antonio Hardan, a child and adolescent psychiatrist at Stanford University who specializes in autism, makes a point of it. "I've been in this field for 15 years, and seemingly every month you have something that people get excited about, and then it dies out," he says. If whatever the latest is seems unsafe, he cautions against it-"though parents don't always follow our recommendations," he notes.

If the treatment seems safe, he helps families figure out how to include it in their schedule and budget, and instructs them to try it for three months, then stop and see what happens. Even with these guidelines, it's difficult to connect an improvement to an intervention, he says: "You don't know if it's the drug or the child's natural maturity process."

Parents often combine multiple approaches, making it even more challenging to track cause and effect. "I saw a kid last week who is taking 80 different supplements," says Hardan. More commonly, children take about 10 to 15 supplements, he says. "You could be the smartest person on earth and not understand how they are working together."

He emphasizes that parents should discuss all the treatments they try with medical professionals-for safety reasons, but also because something they're doing might warrant scientific investigation. Hardan himself has launched studies into unproven therapies he's learned of from the families he works with. He is testing whether the neurosteroid pregnenolone alleviates irritability in children with autism. His group is also considering a study into the current "big thing:" cannabis. After seeing how cannabidiol-derived from marijuana-helps children with epilepsy, some parents have begun giving it to their children with autism and reporting drops in anxiety, aggression and self-injurious behavior.

"It's possible there may be something beneficial out there," says Hardan. "But currently, we don't know if these are safe and effective, much less the appropriate dose and duration." In this case, parents are far ahead of medical research, which can't yet offer any answers.
* * *
When Zurcher went looking for adults with autism who might offer insight into what the future holds for Emma, an intense internet search led her to Julia Bascom's blog, Just Stimming. As she read every post and clicked through to every site linked from Bascom's site, she found people who saw autism as an integral part of their identity. "It was as though I'd been living my life believing in this one universe, and then I was shown this alternate universe," she says. "My entire focus changed. Instead of fighting against Emma's neurology and trying to cure this heinous disorder, I started finding ways to help her flourish."

One major focus was giving Emma a means of communication other than speech, which is difficult for her. Ask her name, and she might respond, "You may not spit." Ask her age, and she might tell you she's 10. (She's 14.) Hand her a keyboard, though, and she'll type the correct answers-and much more. She goes slowly, picking out one letter at a time, all by herself. A single sentence can take a couple of minutes to craft, but the effort allows her to express herself. "There's not a direct line between my brain and my mouth," she wrote for an English assignment in May.

Lord says that for those children who can and want to type, it can be beneficial. But there's no guarantee that all children with autism can learn to type. "There are a very small number of people with autism who you'd think could never type, who do become able to type independently," Lord says.

Today, Emma takes three classes at her brother's school and is otherwise homeschooled. She wants to get her high school diploma someday, which looks like a real possibility. She still gets occupational therapy, but quit speech therapy after deciding she didn't like it. She loves to listen to music, dance, wear frilly dresses, and write for the blog she's taken over from her mother.

Typing has been a boon; last year, for instance, Emma told her mother she was having stomach pains, something she couldn't have easily conveyed before. Still, she continues to face serious challenges. She struggles, for instance, with the inability to control things she feels compelled to say, and bites down on her arm to help dispel stress, even though she knows others find the behavior disturbing. "I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type," she wrote in February. "I have an incredibly large capacity to listen, learn, and feel."

Zurcher says the money they spent on their quest for a cure was "insane." She refuses to tally up the total. "My daughter has a disability, she is challenged, absolutely," says Zurcher. "And we make it so much harder by stigmatizing people with autism for having a different neurology." What still haunts Zurcher is the thought that she might have exposed her daughter to treatments that harmed her, perhaps in ways they'll never know.

The family no longer takes those risks with Emma's health. These days, Emma decides which, if any, interventions to pursue. "It's much more sensible, I think," says Zurcher. "But I'm also not living in terror anymore."

When asked, Emma has said that aside from occupational therapy, none-not one-of the interventions helped her, Zurcher says. But she doesn't seem to hold a grudge. In fact, she appears to forgive her mother more readily than Zurcher forgives herself. During a conversation in 2014 about past treatments, Emma seemed to understand exactly why her mother pursued so many therapies over the years. "You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference," she typed. "Fear caused you to behave with desperation."
This article appears as part of a four-part series courtesy of Spectrum.

We want to hear what you think about this article. Submit a letter to the editor or write to letters@theatlantic.com.

Alisa Opar is a science writer based in California.

Spectrum publishes news and analysis of advances in autism research. It is an editorially independent publication funded by the Simons Foundation Autism Research Initiative.

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