The Autism Support Center

Every person is unique, but when you face a challenge like having your child diagnosed with autism, you are never alone.  Countless men and women have faced the exact same situation and have survived and thrived.  The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Internet and assembled links to the very best disorder resources: articles, blogs, forums and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges that you face. 

As you’ll see, we always welcome your ideas and suggestions to make this Disorder Guide even more helpful to survivors like you.    

JUST FOUND OUT

Survivors Say: Best Resources for Autism

• Autism Society of America: Improving the Lives of All Affected by Autism
• National Institute of Neurological Disorders and Stroke: AutismFact Sheet
  
• MayoClinic.com: Autism
  

The Big Picture

Autism is a common childhood disorder that affects communication and behavior. It is one of the fastest growing diagnoses in children. An estimated 1 in 150 children has autism, and the numbers are even higher for boys. Most children are diagnosed in their early elementary-school years because of concerns their teachers and parents have about their ability to communicate. Autism is treatable in many situations, but there is no cure for the disease. In fact, researchers are still searching for a definitive cause for this disorder.

About.com: What Causes Autism?

Familiarizing yourself with the stats and facts about autism is the best way to begin your journey to surviving.

Autism Society of America: Facts and Statistics

Your Autism

Autism Speaks is an organization dedicated to helping parents whose children have autism. This organization has videos and textual information available for parents.

Autism Speaks: It's time to listen

The Dan Marino Foundation works to advocate for people with autism and their families. The group also has some services available for families that need it.

Because autism is such a common childhood disorder, the Department of Health and Human Services has a group tasked with coordinating all official information about autism, research, and treatment.

U.S. Department of Health & Human Services: Interagency Autism Coordinating Committee

Your World

People on the autism spectrum have highly differentiated needs. Some people use only mild interventions and behavioral tools to help them function while others need significant medical care. For the first steps to take, it’s important to connect with others.

Autism and PDD Support Network

Autism Controversies

• Some people believe vaccines cause autism, but most scientists disagree.
  
• Some people argue that autism has a large genetic component, while others believe the cause is entirely environmental.
• The medical and educational communities debate whether autism is a disability or simply a variation on normal.
  

Information and Recommended Links for Survivors

• Autism.org: Autism Collaboration
  
• Oceans of Emotions: Tips for Dealing with Autism and Asperger Syndrome
• WCCO.COM: Dealing With Autism As Children Become Teenagers

Types of Treatment

Applied Behavior Analysis

ABA, also known as Intensive Behavioral Intervention, is a form of behavior-based learning that allows therapists and parents to work with autistic children. These adults work with the children to help them with specific behaviors that may be causing them problems. ABA incorporates certain instructional methods, such as Discrete Trial Teaching.

Autism Treatment: What is Applied Behavioral Analysis?

Medication

A wide range of medication is on the market to help people with ASD (Autism Spectrum Disorder). These medications can help with the physical manifestations of autism and can also help control some of the behavioral issues. The key to choosing medications is to work with a primary doctor who will be responsible for overall medication management.

Autism Society of America: Medications

Possible Treatment Side Effects

Medications for autism can have serious side effects. In some children, the medication may cause headaches, weight gain or even depression. Many of the medications for autism are also used to treat patients with mental illnesses, and these drugs can be very powerful.

BBB Autism Online Support Network: Medications and Autism

New Therapies

Despite the multitude of options available, only two treatments – ABA and the drug Risperdal – are proven through scientific research to help with the symptoms of autism. New treatments become available all the time; however, it is important that patients take precautionary measures with these treatments.

Holistic Treatments 

Many parents believe in holistic treatments to treat autism. A large number of books and websites are available that deal with the autistic diet and how to control the environment to help children with autism.

Autism Web: The Truth About the Gluten-Free, Casein-Free Diet for Autism and PDD

Creating a Support Circle

• Set up your TSC Survivor Profile
• Join support groups of other survivors or set up your own
• Interact and provide updates on your profile or our forums.

Financial Matters

Autism is a major ongoing cost for many families. Many people who are on the autism spectrum require continuous therapies and medications, and the costs can add up.

About.com: What Does Autism Cost?

Insurance companies don’t always pay for autism treatment because of the nature of the illness and the ongoing medical expenses it requires. Find out which states have legislation requiring autism coverage, and where your state stands.

Blogspot: Autism Bulletin

Health-care Providers Who Can Help

Most people diagnosed with autism spectrum disorder are children. They typically see pediatricians as their primary care physicians, though some see family doctors as well. These doctors often start a patient’s family on the road to a diagnosis but may refer the child to specialists, such as occupational therapists, who can help determine where the child is on the autism spectrum.

Resources to Find Doctors

• Learning About Available Screenings: Autism Guideline for Patients (PDF)
• Choosing a Pediatric Generalist: About: Choosing a Pediatrician
  
• Understanding Problems with Diagnosis: NPR: Why Can't Doctors Diagnose Autism

The Emotional Rollercoaster

One key to surviving with a child with autism is to continue living your life as you always have -- to as great an extent as possible. Though there certainly will be days when you won’t feel like getting up and doing anything, you should make sure that you do get up and get moving when you are feeling good. Continuing to live your life as normal will keep you going and give you a reason to continue fighting for your child. Surrounding yourself with friends and supportive family members is another way to help the process.

Books Survivors Recommend

• The Autism Acceptance Book: Being a Friend to Someone with Autism
• Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think
  
• The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet
• Ten Things Every Child with Autism Wishes You Knew

What Survivors Wish They’d Known

• Communicate with your health-care providers on a regular basis
  
• Stay up to date on autism spectrum disorder research. The research results change quickly, and by staying informed you can be your child's best advocate for proper treatment and support.
• If you think your child's doctor may not be aware of new research, bring copies of the relevant article to your child's next appointment. Take an active role in dealing with this disorder.
• Don’t allow health-care providers to write off all of your child's health concerns as “symptoms” of the illness. Demand that your child be treated as any other child for primary care concerns.

Dealing with Autism: Information and Recommended Links for Co-Survivors

How you can help

• When a friend or family member’s child is diagnosed with autism, be as supportive as possible. Parents often get frightened when their children face any medical problem, and your friend or family member may need a place to show that fear. Allow them that space, and if you can, be the shoulder they can lean on.
• If you have a child as well, allow your child and that of your friend or family member to continue to play together. Many parents of children on the autism spectrum feel isolated because other parents don’t want their children to play with the autistic child. Work with your friend on any communication or behavioral problems that come as a result of the autism diagnosis to try to keep friendships intact.
• If you are the parent of a diagnosed child, then you need to prepare yourself to educate that child. Work on learning as much as you can about the disorder so that you can help monitor your child’s behavior.

What to say 

• "I’m here for you. Let me know what I can do to help.”
• "If you need a break, feel free to call me. I’ll be happy to help.”
• “Plenty of people live happy, productive lives with autism. In fact, many flourish! This disorder is manageable.”

What not to say

• "Isn’t every kid autistic these days?" 
• "I’ve heard autism’s not that bad."
• "Did you have your child vaccinated? I’ve heard that causes autism."

Things you can do for a survivor every day

Children who are on the autism spectrum range from highly-functioning children who simply need a bit of extra time to do things to children who take up significant amounts of their parents’ time and energy. If a friend or family member is faced with a child with autism, you can help by offering to do daily tasks for the friend. Pick up dinner on occasion. Offer to help fold laundry when you're over. Parents often can use the help, especially when they’re learning to manage the disorder.

How to build a support network

• Set up your TSC Co-Survivor Profile
• Create a support group for your friend or family member.
• Interact and provide updates

How to help a survivor deal with day-to-day challenges

• School Choices and Autistic Children: About.com - Typical Private Schools and Autistic Learners
• The Chances of Multiple Children with Autism: Multiple Children (PDF)
  
• In College with Autism: Professor Advice - College Planning for Students on the Autism Spectrum

Once you understand what autism is and where your child is on the spectrum, you can begin to prepare to thrive with this condition. Assess and share with others how you feel emotionally, mentally and spiritually. By telling your story, you can not only put into perspective your thoughts and feelings, but you can provide hope to others who are going through a similar journey themselves, whether it be having a child with autism, or coping with a completely different disease.  

Recovery

A common misconception about people who have autism is that they are incapable of learning. Many of them simply need changes to adjust to their learning style. Learning to make these changes is the way to begin to live well with autism.

Autism.com - Families - Therapy: Teaching Tips

Finding employment when you’re autistic means working with your condition to find the work best suited to your life and personality. Parents of autistic children can begin to work on this process by helping their children look at various career fields.

Neurodiversity.com - Employment

Give Back

What helped you while your child was diagnosed and undergoing treatment? Take a look back at your journey and share with other what helped you and what you wished you would have known/done during your leukemia experience. You can create a profile, reach out to other survivors, join support circles or share your story by following the links at TheSurvivorsClub.org.

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