The Asperger's syndrome Support Center

Every person is unique, but when you face a challenge like Asperger Syndrome, you are never alone. Countless people have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey through Asperger's with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Web to assemble links to the very best resources about Asperger Syndrome: 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're facing now.

JUST FOUND OUT 

Survivors Say: Best Resources for Asperger Syndrome

Survivors say these are the best resources for those who have just found out -- check them out to discover your options.

• National Institute of Neurological Disorders and Stroke: Asperger Syndrome Information Page  This division of the National Institutes of Health has compiled a wealth of information and resources from current treatment to ongoing research and clinical trials.
  
• MAAP Services for Autism & Asperger Syndrome  This nonprofit gives information and advice to families of more advanced indivuals with Asperger's (meaning they don't have severe intellectual impairments) and help them network with others in similar circumstances.
• Asperger's Disorder Homepage  A resource page with medical information about Asperger's provided by R. Kaan Ozbayrak, M.D., a professor of psychiatry at the University of Massachussetts Medical School.
  

The Big Picture

Asperger's syndrome (AS) is a developmental disorder that affects a child's ability to socialize and communicate effectively with others. Doctors group AS with other conditions that are called "autistic spectrum disorders" or "pervasive developmental disorders," all involving problems with social skills and communication. AS is considered to be at the milder end of this spectrum. These disorders are present at birth, but the signs of the disorders usually are noticed during the child's first three years. The most distinguishing symptom of AS is a child’s obsessive interest in a single object or topic, and their conversations with others will be about little else. Other characteristics include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior; and clumsy and uncoordinated motor movements.

While there's no cure for AS, it's important to be able to understand the specifics involved with your child's personal case. The most relevant treatment is focused on helping him or her learn how to interact more successfully in social situations.

• Mayo Clinic: Asperger's Synrome - Symptoms
• Web MD: Asperger's Syyndrome: Exams and Tests
  

Your Asperger Syndrome

Because AS is one of the autism spectrum disorders, you should learn about the similarities and differences of all of them.

National Institute of Mental Health: Autism Spectrum Disorder

After diagnosis, it's important to find the right treatment plan as soon as possible to help children cope with the disease. The earlier the intervention, the better the outcome.

National Institute of Neurological Disorders and Stroke: Are There Treatments Available?

Your World

If your child has been diagnosed with AS, you may worry about his or her future. It is important to know that with effective treatment, children with AS can learn to cope with their disabilities. Many adults with AS are able to work successfully in mainstream jobs, although they may continue to need encouragement and moral support to maintain an independent life.

 MAPP Services: Asperger Syndrome - Some Common Questions 

Autism Society of America: Family Issues

Asperger Syndrome Myths

• AS is caused by cold mothers.
• AS is caused by child abuse.
• AS is caused by generally bad parenting.
  

Suite101: Reality and Myths about Autism Spectrum Disorders

Information and Recommended Links for Survivors

Survivors say these are the best guides -- check them out for the best options for handling AS.

• Mayo Clinic: Asperger's Syndrome
• WebMD: Asperger's Syndrome

Types of Treatment

AS can't be cured, but most children benefit from early specialized treatments that focus on behavior management and social skills improvement. Options include social skills training, cognitive behavioral therapy, and medications for symptoms like anxiety or hyperactivity.  Your doctor can help you find local resources that may work for your child. 

• Mayo Clinic:Treatments and Drugs
• Web MD: Treatment Overview
  

Possible Treatment Side Effects

Many children with AS also have other coexisting conditions, including  attention deficit hyperactivity disorder, bipolar disorder, obsessive-compulsive disorder, social anxiety disorder and depression. These conditions may require treatment with medicines and other therapies that could create side effects. Before taking any medication, talk with your doctor to weigh the risks versus the benefits.

Drugs.com: Drug Side Effects

New Therapies

The National Institutes of Health is sponsoring multiple research projects to understand what causes AS and how it can be effectively treated. There are also clinical trials for new treatments being held, both in the U.S. and worldwide.

• The National Institute of Neurological Disorders and Stroke: What Research is Being Done?
• National Institutes of Health: Clinical Trials for Asperger's Syndrome

Holistic Treatments

You can best serve your child by learning about how provide a supportive, loving home environment. Daily routines, visual teaching aids and quiet environments with little background can help him or her learn how to cope with AS and become independent.

Web MD: Asperger's Syndrome - Home Treatment

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

Legal & Work Matters

O.A.S.I.S., a support site for AS survivors and caregivers, offers legal and educational resources.

O.A.S.I.S: Legal Resources

Resources to Find Doctors

Ask your healthcare provider for referrals to medical experts who treat and study AS. There are many clinical psychologists and medical centers nationwide that specialize in behavioral, educational and medical treatments.

• O.A.S.I.S: Medical Centers and Clinicians
• Aspergers.com: Asperger's Disorder Clinicians
  

Books Survivors Recommend

• The Complete Guide to Asperger's Syndrome by Tony Attwood
• Parenting a Child with Asperger Syndrome: 200 Tips and Strategies  by Brenda Boyd
  
• Building Social Relationships: A Systematic Approach to Teaching Social Interaction Skills to Children and Adolescents with Autism Spectrum Disorders and Other Social Difficulties by Scott Bellini
  

What Survivors Wish They’d Known

Communicating with Your Healthcare providers

• Bring a friend or family member with you to your appointments, not only to provide support but to lend an extra ear to understand everything your healthcare provider has to say and to think of questions you may have forgotten to ask.
• Write down any questions ahead of time, then write down the answers as your healthcare provider walks you through them.
  
• Don't be afraid to ask for clarification on anything.Don't be afraid to ask any questions, even if you may be scared of the answer. Ignorance won't help you cope with AS.

Mayo Clinic: Asperger's Syndrome - Preparing for your appointment

Dealing with Asperger’s Syndrome: Information and Recommended Links for Co-Survivors

 How you can help

• Assist your friend or family member with his day-to-day duties or chores, but be sure to find a good balance so as not to throw off his pattern of living. That may increase his stress, and he may feel he is becoming a burden.
  
• Preserve your friend or family member's daily activities. It's normal to feel protective but excluding Asperger survivors from activities or decisions you don't see them as fit enough to do or make contributes to their feelings of helplessness.
  
• Involve your friends or family members with others. Don't focus exclusively on their child's disease and treatment plan when interacting with them. Talk to them about your own life, or make plans to have them visit with friends and loved ones. A survivor involved with others has a better chance of avoiding feelings of abandonment.
  

What to say   

• "I'm here to support you however I can."
• "If you want to talk, I want to listen."
  
• "Asperger children can lead very full lives."
  

What not to say

• "I'm sorry you have an abnormal child."
  
• "He'll never be normal."
  
• "You can never let her out of your sight."

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

• Inform your child's school of his condition and find out what services are available for them.
• Know what your child's education rights are.
• Autism Society of America: Education
• Web MD: Educational Rights for Children with Disabilities

Remission / Recovery / Recurrence   

There is no cure for AS, but those affected -- and their caregivers -- can grow up learning how to cope and function with it. Many AS survivors are healthy, independent adults who are employed and have learned to interact with society.

• Web MD: Growing Up with Asperger's Syndrome Video
• Web MD: Raising a Child with Asperger's Syndrome
• Web MD: Asperger's Syndrome - Secret to Success
  

Give Back

What helped you while you were dealing with the diagnosis, undergoing treatment and realized you had survived? 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 Asperger Syndrome 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. Many organizations supporting Asperger Syndrome research offer online forums where you can offer support to and get advice from other survivors.

• AspergerInfo.com: Discussion Boards
• O.A.S.I.S.: Message Boards and Chats
  

Asperger's syndrome can be a difficult, lonely disorder — both for affected children and their parents. By nature, the disorder brings difficulties socializing and communicating with your child. It may also mean fewer play dates and birthday invitations and more stares at the grocery store from people who don't understand that a child's meltdown is part of a disability, not the result of "bad parenting." But with time, patience and the help of trusted professionals, you'll learn which situations and environments may cause problems for your child, and which coping strategies work.

Mayo Clinic: Asperger's Syndrome - Coping and Support