After Diagnosis
Table of Contents
- How do I find out about autistic spectrum disorders?
- How can your family deal with having a child with autism?
- Taking care of yourself
- How do we support or talk to siblings?
- How do we support or talk to grandparents and extended family members?
- How do I get in touch with another parent?
- How do I keep track of my childs records
When parents learn that their child has a disability or a chronic illness, they begin a journey that takes them into a life that is often filled with strong emotion, difficult choices, interactions with many different professionals and specialists, and an ongoing need for information and services. Initially, parents may feel isolated and alone, and not know where to begin their search for information, assistance, understanding, and support. (You Are Not Alone, NICHCY)
The terrain families must travel is often rough in places. And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child's illness or disability. (The Unplanned Journey When You Learn That Your Child Has a Disability, NICHCY)
How do I find out about autistic spectrum disorders?
As hard as it is, receiving a diagnosis also means that a description is now attached to your child. It is important for everyone involved in your child's life to remember that he or she is always a child first and should never be defined by his or her diagnosis. As you begin to learn more about autistic spectrum disorders, you will soon find out that there is an almost unlimited number of opinions, theories and treatment options available. As you have made other decisions about your child up to this point, you will now be asked to make decisions about services and programs that are new to you. This section was designed by parents to help you learn more about your child's diagnosis. The Parent Recommended Starter Kit consists of the most recommended resources. The Digging Deeper list contains additional resources that parents chose.
Parent Recommended Starter Kit
Resources
Web
California Programs, Agencies and Departments
Department of Developmental Services (DDS)
- This site describes the Early Start system that provides early intervention services to infants and toddlers with disabilities and their families in a coordinated, family-centered network.
Early Start Family Resource Centers
- The Family Resource Centers Network of California site can link you to the Early Start Family Resource Center in your area which can provide information packets on autistic spectrum disorders.
- The California Association of Family Empowerment Centers can provide links to local Family Empowerment Centers that provide family education, empowerment, and parent-professional collaborative activities for families of children with disabilities ages 3-22 years old.
Parent Training and Information Centers and Community Parent Resource Centers (Parent Centers)
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Parent Centers serve families of children and young adults from birth to age 26 with all disabilities. They help families obtain appropriate education and services for their children with disabilities; work to improve education results for all children; train and inform parents and professionals on a variety of topics; resolve problems between families and schools or other agencies; and connect children with disabilities to community resources that address their needs.
National Resources
Centers for Disease Control Autism Information Center
- Offers comprehensive information about autism spectrum disorders including signs and symptoms, treatments and therapies, links and current news and highlights.
National Institute of Neurological Disorders & Stroke
- The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders and offers information about autism.
National Institutes of Mental Health
- The National Institute of Mental Health, a division of the National Institutes of Health, has a 41-page booklet on autism which may be downloaded or ordered. The NIMH website also provides an extensive number of related articles about Autism.
US Department of Health and Human Services
- The Department Of Health And Human Services is the United States government's principal agency for protecting the health of all Americans and providing essential human services.
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A service of the US National Library of Medicine and the National Institutes of Health.
Digging Deeper
National Institute of Child Health and Human Development
- This website features links to descriptions of recent clinical trials, news releases, and publications available in both English and Spanish.
- The National Institute of Child Health and Human Development part of the National Institutes of Health, within the U.S. Department of Health and Human Services, is one of many federal agencies working to understand autism. The NICHD supports and conducts research on what causes autism, how many people have autism, how to best treat the symptoms, and other topics.
The Center for Autism and Related Disabilities
- The Center for Autism and Related Disabilities at the University of South Florida provides information for families and educators. Includes a printable card that can be given out to that explains autism.
- The WebGuide is a directory that evaluates, describes and provides links to hundreds of sites containing child development research and practical advice.
Books, Videos and DVDs
- 10 Things Every Child with Autism Wishes You Knew: A Parent's Guide to Asperger and High Functioning Autism (Notbohm, 2005)
- All cats have asperger syndrome (Hoopman, 2006)
- Autism Now What? A Primer for Parents (Collins and Collins, 2002)
- Autism Encyclopedia (Neisworth & Wolfe, 2004)
- Autism Spectrum Disorders The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder and Other ASDs (Sicile-Kira, 2004)
- Children with Autism - A Parent's Guide (Powers, 2000)
- Could it be Autism? A Parent's Guide to First Steps & Next Steps (Wiseman, 2006)
- Facing Autism: Giving Parents Reasons for Hope (Lynn Hamilton, 2000)
- New Developments in Autism and Guidance for Help (Perez, Comi, Nieto, 2006)
- Oasis Guide to Asperger Syndrome - Finding the Answers, Strategies, Advice, Supports Insight and Inspiration (Atwood, Bashe, Kirby, Baren-Cohen, 2005)
- Overcoming Autism. Finding the Answers, Strategies and Hope That Can Transform (Lynn Koegel, 2005)
- Parenting Your Aspergers Child (John, Grayson, 039953705)
- Quirky Kids- Understanding and Helping Your Child Who Doesn't Fit In - When to Worry and When Not to Worry (Klass & Costello, 2004)
- The Autism Book - Answers to Your Most Pressing Questions (Robledo, Ham-Kuchharski, 2005)
- The Everything Parent's Guide to Children with Aspergers Syndrome, Help, Hope and Guidance (Stillman, 2005)
- The Everything Parent's Guide to Autism- Know What to Expect, Find the Help You Need, and Get Through the Day (Tilton, 2005)
- The Different Shades of Autism (Trefler and Bird, 1999)
- Autism Heroes - portraits of families meeting the challenge (Firestone, 2007)
- Normal People Scare Me, A Film About Autism (DVD) (Normal Films)
- Would You Be My Friend? Songs for Children (CD) (Linda Conrad)
How can your family deal with having a child with autism?
An important part of your child's treatment plan is making sure that other family members get training about autism and how to manage symptoms. Training can reduce family stress and help your child function better. Some families need more help than others. Take advantage of every kind of help you can find. Talk to your doctor about what help is available where you live. Family, friends, public agencies, and autism organizations are all possible resources. Remember these tips from WebMD.com:
- Plan breaks. Daily demands of caring for a child with autism can take their toll. Planned breaks will help the whole family.
- Get extra help when your child gets older. The teen years can be a very hard time for children with autism.
- Get in touch with other families who have children with autism. You can talk about your problems and share advice with people who will understand.
- Raising a child with autism is hard work. But with support and training, your family can learn how to cope.
Taking care of yourself
Yes, we know that when parenting a child with special needs, it is hard to follow the often-offered advice to take care of yourself. Seasoned parents will attest to the sanity-saving benefits of stealing a few moments for yourself and your significant other. For some parents, it helps to think about the instructions given by flight attendants when they tell us to put on our own oxygen mask before we help anyone else. We need to be prepared in order to provide the care our child needs. WebMD.com offers the following tips:
- Learn ways to handle the normal range of emotions, fears, and concerns that go along with raising a child with autism. The daily and long-term challenges put you and your other children at an increased risk for depression or stress-related illnesses. The way you handle these issues influences other family members.
- Get involved in a hobby, visit with friends, eat right, exercise and learn ways to relax.
- Seek and accept support from others. Consider using respite care, which is a family support service that provides a break for parents and siblings. In addition, support groups for parents and siblings are generally available; people who participate in support groups can benefit from others' experiences.
- Talk with a health professional about whether counseling would help if you or one of your children is having trouble handling the strains related to having a family member with autism.
Resources
Web
Pacer Center
- Parents Of Children With Disabilities Need To Nurture Their Own Relationship (PDF) (download free adobe reader)
How do we support / talk to siblings?
The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about "catching" the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children (The Unplanned Journey When You Learn That Your Child Has a Disability, NICHCY)
Resources
Web
Early Start Family Resource Centers
- The Family Resource Centers Network of California site can link you to the Early Start Family Resource Center in your area which can provide information packets on siblings, sibshops or support groups.
- The California Association of Family Empowerment Centers can provide links to local Family Empowerment Centers that provide family education, empowerment, and parent-professional collaborative activities for families of children with disabilities ages 3-22 years old.
Parent Training and Information Centers and Community Parent Resource Centers (Parent Centers)
- Parent Centers serve families of children and young adults from birth to age 26 with all disabilities. They help families obtain appropriate education and services for their children with disabilities; work to improve education results for all children; train and inform parents and professionals on a variety of topics; resolve problems between families and schools or other agencies; and connect children with disabilities to community resources that address their needs
Autism Society of America
- Seeks to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues.
Books, Videos and DVDs
- Siblings of Children with Autism: A Guide for Families (Harris & Glasberg, 2003)
- Andy & His Yellow Frisbee (Thompson, 1996)
- Autism Through a Sister's Eyes (Band & Hecht, 2001)
- Living with a Brother or Sister with Autism (Meyer & Vadasy)
- Ian's Walk: A Story About Autism (Lears and Ritz, 2003)
- Special Siblings: Growing up with someone with a disability (McHugh, 2002)
- Understanding Brothers and Sisters on the Autism Spectrum (DVD)(Coulter Video Inc.)
How do we support / talk to grandparents & extended family members?
Grandparents are often greatly affected by the birth of a child with a disability. "They face the double grief of their grandchild's disability and their own child's pain." It is important to remember that they will need support and information, too. (This is true for other members of the family as well.)
Therefore, your parents and other members of the extended family need to be given opportunities to get to know your child as a person and not just a person with disabilities. Help them to understand your child's strengths and needs, help them to accept him or her as part of the family. Allowing family members to become involved with your child may also allow you some much-needed time away from the responsibilities associated with caring for a child with special needs. (The Unplanned Journey When You Learn That Your Child Has a Disability, NICHCY)
Resources
Web
- The Grandparent Autism Network informs grandparents about autism and the medical, educational, legal and social issues that affect their families, enabling them to share how they may improve the quality of life for their children and grandchildren.
Early Start Family Resource Centers
- The Family Resource Centers Network of California site can link you to the Early Start Family Resource Center in your area which can help families navigate the Early Start system.
- The California Association of Family Empowerment Centers can provide links to local Family Empowerment Centers that provide family education, empowerment, and parent-professional collaborative activities for families of children with disabilities ages 3-22 years old.
Parent Training and Information Centers and Community Parent Resource Centers (Parent Centers)
- Parent Centers serve families of children and young adults from birth to age 26 with all disabilities. They help families obtain appropriate education and services for their children with disabilities; work to improve education results for all children; train and inform parents and professionals on a variety of topics; resolve problems between families and schools or other agencies; and connect children with disabilities to community resources that address their needs
Autism Society of America
Print/Multimedia (books, videos, dvds)
- Autism: Now What? A Primer for Parents (Collins & Collins, 2002)
- Autism & Me (DVD)(Rory Hoy, 2007)
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Autism: The Musical (DVD)(AutismTheMusical.com)
Military Families
Web
Specialized Training of Military Parents (STOMP)
- STOMP is a one-stop shop for military families of children with disabilities for information and training regarding special education and other resources.
Department of Defense
Zero to Three - Military
- The Military Project is committed to supporting the youngest of children from military families.
Exceptional Family Member Program
- A Department of the Army Program designed to assist active duty personnel during assignments/reassignments sponsoring Exceptional Family Members (EFM) with special physical, emotional, developmental, or intellectual needs.
Military Families With Special Needs Children
- For everyone who has kids with special needs and deals with the special needs of the military.
Print/Multimedia (Books, Videos and DVDs) (download free adobe reader)
- Special Needs Smart Book (PDF format) is for those who assist military personnel and their families
with special needs. Provides information and resources to enhance the quality of life for
special needs families. Produced by The Office of the Deputy Under Secretary of Defense
for Military Community and Family Policy.
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The Department of Defense (DoD) Special Needs Parent Tool Kit contains 110 pages of comprehensive information and tools geared towards helping military families with special needs children navigate the maze of medical and special education services, community support and benefits and entitlements. The Tool Kit is divided into six colorful modules that can be easily downloaded and printed or saved on a CDROM.
Just for Kids
Resources
Web
Family Voices Kids As Self Advocates (KASA) Newsletter
- A bi-monthly newsletter with information of interest to children and youth with disabilities and special health care needs and those who work with us and care about us. To subscribe, send an email to kasa-subscribe@yahoogroupscom
National Dissemination Center for Children with Disabilities (NICHCY)
- This website lets kids connect with other kids, learn about themselves, tell their story and have fun and play games.
- KidsHealth offers doctor-approved, age-appropriate health information for kids. The Autism topic page includes descriptions of symptoms, causes, and treatment options
How do I get in touch with another parent?
As is true with many experiences in life, that chance to talk with a 'veteran', someone who has experienced the thing you are going through and is a few steps ahead on the journey can be invaluable. One parent described it this way in NICHCY's publication You Are Not Alone:
There was a parent who helped me. Twenty-two hours after my own child's diagnosis, he made a statement that I have never forgotten: "You may not realize it today, but there may come a time in your life when you will find that having a daughter with a disability is a blessing." I can remember being puzzled by these words, which were nonetheless an invaluable gift that lit the first light of hope for me. This parent spoke of hope for the future. He assured me that there would be programs, there would be progress, and there would be help of many kinds and from many sources. And he was the father of a boy with mental retardation.
Resources
Web
Early Start Family Resource Centers
- The Family Resource Centers Network of California site can link you to the Early Start Family Resource Center in your area which can provide trained parent to parent matches and information about local resources and support groups.
- The California Association of Family Empowerment Centers can provide links to local Family Empowerment Centers that provide family education, empowerment, and parent-professional collaborative activities for families of children with disabilities ages 3-22 years old.
Parent Training and Information Centers and Community Parent Resource Centers
- Parent Centers serve families of children and young adults age from birth to age 26 with all disabilities. They help families obtain appropriate education and services for their children with disabilities; work to improve education results for all children; train and inform parents and professionals on a variety of topics; resolve problems between families and schools or other agencies; and connect children with disabilities to community resources that address their needs.
National Dissemination Center for Children with Disabilities (NICHCY)
- Parenting a Child With Special Needs - You Are Not Alone
Family / Personal Experiences
Many families find that learning about other families' experiences is helpful and uplifting. Some of the following resources are specific to autism and some are about special needs in general.
Print/Multimedia (books, videos, dvds)
- A Will of his own: Reflections on Parenting a Child with Autism (K Harland, 2002)
- Autism in a World (DVD) (2004)
- Autism: Heartfelt Thoughts from Mothers (Lynne, 2005)
- Autism: Heartfelt Thoughts from Fathers (Lynne, 2007)
- Autism: The Musical (DVD) (Docurama Films ®)
- Chicken Soup for the Soul Celebrates Children with Special Needs (2007)
- Cup of Comfort for Parents of Children with Autism; Stories of Hope and Everyday Success (Sell, 2007)
- Emergence - Labeled Autistic (Grandin, 1999)
- Facing Autism: Giving Parents Reason for Hope (Hamilton, 2000)
- If you've ever wanted to crawl in the closet with an OREO... Tips for parenting a child with special needs (Downey, 2004)
- Just this Side of Normal (Gerlach, 1999)
- LTS - Autistic Spectrum Disorders: Speaking Hope (CD) (MarkInc Ministries)
- Son Rise The Miracle Continues (Kaufman, 1995)
- Uncommon Fathers: Reflections on raising a child with a disability (Meyer, 1995)
How do I keep track of all of my child's records?
Once your child enters the world of diagnosis and treatment, you will find yourself in possession of a dizzying amount of paperwork. Agency and insurance eligibility forms, reports, school records, business cards and brochures seem to multiply unchecked. Some families designate a drawer or box and keep everything there (who has time to file)? For those who need a higher level of organization, you may want to begin a record keeping notebook for your child and family. This notebook will go with you to your appointments and help you provide needed information. Following are some possible sources of recordkeeping notebooks.
Resources
Web
Early Start Family Resource Centers
- The Family Resource Centers Network of California site can link you to the Early Start Family Resource Center in your area. Many Family Resource Centers have Family Notebooks available to families. Some even offer classes in how to assemble them.
American Academy of Pediatrics
- This site provides a template for creating a personalized Care Notebook. Chose Tools and Resources, For Families and Care Notebook.
- Many regional centers have Family Notebooks available to families.
PatientCenters.org
Los Angeles Medical Home Project
- All About Me! Parent Notebook - Developed by the Los Angeles County Medical Home Project
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This portion of the FRCNCA.org website has been developed by the Family Resource Network of California (FRCNCA), with funding provided by the California Department of Developmental Services (DDS). DDS, FRCNCA, and FRCNCA.org are not responsible for the content found at the aforementioned links, nor do the links imply endorsement or promotion of the company/organization, its content, services, therapeutic treatment options, or products. DDS, FRCNCA, and FRCNCA.org are also not responsible for the policies and practices of these sites, such as their Privacy Policy, use of cookies, etc. The user visits these site at their own risk. Our website provides links as information only. Information at this site is not intended as a substitute for medical/health care. This information is not to be taken as medical or other health advice pertaining to any specific health and medical condition. DDS and FRCNCA strongly encourage consumers to speak with their physicians/health care professionals about their particular health and developmental concerns. DDS and FRCNCA do not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on this site, sites mentioned on this site, and linked sites.