Parent’s Parent s Guide to Autism - Autism Speaks

1 Parent s Guide to AutismA Parent s Guide to AutismAn Autism Speaks Family Support Tool KitA Parent s Guide to AutismAn Autism Speaks Family Support Tool KitA Parent s Guide to AutismAn Autism Speaks Family Support Tool KitSupport and guidance for parents of children recently diagnosed with autismParent s Guide to AutismA Parent S Guide TO Autism 2018 Autism Speaks Inc. Autism Speaks and Autism Speaks Design are registered trademarks owned by Autism Speaks Inc. All rights reserved. The use of unaffiliated representatives for endorsement, advertising, promotional and sales material is prohibited by Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about Autism as a service to the community. The information provided in this email is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals.

2 Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to Parent S Guide TO AUTISMT able of ContentsIntroduction 1 Response to the Diagnosis 1 Your Role as a Parent 3 Ten Things parents Can Do to Help Their Child with Autism 5 Building a Support Network 6 Taking Care of Yourself 7 How I Let Go of My Expectations and Learned Unconditional Love 9 Frequently Asked Questions from parents 10 Resources 13A Parent S Guide TO AUTISM1 IntroductionIf your child has recently been diagnosed with an Autism spectrum disorder, you have come to the right place. A Parent s Guide to Autism was developed as part of Autism Speaks series of Family Support Tool Kits to support you and promote a positive future for your child and family during an often challenging time.

3 You are not alone in this journey and this Guide is a step toward finding the help you need to travel the road to optimal outcomes for you, your child and your Autism Speaks 100 Day Kit for Newly Diagnosed Families (versions for both children under 5 and school age children) was designed to provide you with the information and tools you need to make the best possible use of the days following the diagnosis. It is a comprehensive tool filled with facts and resources such as information about symptoms, treatment, legal rights and advocacy. The 100 Day Kit can be found at Parent s Guide to Autism will help you: Learn about how Autism may impact your family. Find strategies and resources for raising a child with Autism . Find support so you don t feel alone or isolated. Reduce the negative impact of the diagnosis on your family.

4 Promote a positive future for your child and additional guidance and support, the Autism Speaks Autism Response Team is here to help. The team is specially trained to connect you and your family to resources and information specific to your child s strengths and challenges. Contact the team at (888) 288-4762 (en Espa ol 888-772-9050) Response to the Diagnosis Learning that your child has been diagnosed with Autism is a powerful moment in your life. Suddenly your life may feel very different from what you expected it to be. You worry first about your child and what it will mean for his or her life experiences. You worry about how you and your family will adjust to this in the years ahead. You worry about the day-to-day challenges of caring for your child with Autism . This is an important turning point in your life as well as the lives of your child and other family members.

5 Getting emotional support and factual information to help you cope and promote a positive future for your child and family will be critical during this period.*For the purposes of this tool kit, the term Autism will be used to describe children with all types of Autism spectrum disorders , including Autistic Disorder, Asperger Disorder, and pervasive developmental Disorder Not Otherwise Specified (PDD-NOS)A Parent S Guide TO AUTISM2 Common Reactions to the Diagnosis Each family s reaction to the diagnosis will be different depending on many factors. When a child is diagnosed with Autism , parents and other family members frequently experience a range of uncomfortable emotions. Whether or not you have suspected some-thing for awhile or the diagnosis seems to have been out of the blue, many parents experience shock when they hear the words, your child has Autism .

6 You may go through periods of denial or refusing to believe this is happening to your child. During this time, you may not be able to hear the facts as they relate to your child. Denial is a way of coping. It may be what gets you through a particularly difficult period. It is important to be aware that you may be experiencing denial, so that it doesn t interfere with making good decisions about your child s treatment. Some parents mourn some of the hopes and dreams they held for their child before they are able to move on. There will probably be times when you feel sad. Allowing yourself to feel sadness can help you grow. You have every right to feel sad and to express it in ways that are comfortable. Anger is also a natural part of the process and you may find that it s directed at those closest to you. Anger is a healthy and expected reaction to the feelings of stress that come with your child s diagnosis.

7 Expressing your anger is natural and at times healthy. There are times you might feel isolated and lonely. These feelings come from a variety of sources when you experience a diagnosis or other significant life change. Loneliness may also come from the fact that you simply don t feel you have the time to contact friends or family for company. You may also feel that if you did reach out to others, they wouldn t understand or be supportive. It s easy to become overwhelmed with your emotions and concerns about what the future may hold. Painful emotions are natural. If you accept your reactions and acknowledge your feelings, you will be able to move forward and begin advocating for your child. Emotions are powerful. If you deny your feelings or ignore them, they will often surface in unpleasant , you will likely feel a sense of acceptance. Your life may not look like what you had planned and you may have to alter your expectations, but your goal remains the same: to help your child live a happy and fulfilling life.

8 Once you accept the diagnosis, you will be ready to advocate for your child and start working toward a brighter Areas of ConcernLike any stressful event in your life, learning your child has Autism will affect everyone in your family and network of friends. It s probably not a surprise that your role as Parent will change and you will go through many positive and negative experiences in your new role. Below are examples of new feelings you may encounter: May feel burden with everyday responsibility of caring child with Autism . May feel pressure to become an Autism expert and learn everything overnight. May worry about child and family s future. May have difficulty finding balance and time to manage household tasks, other children, daily activities, etc. May be less inclined to share feelings.

9 May become stressed about the family s finances and the unknowns of the situation. May develop other problems such as stress and anxiety that can affect work Parent S Guide TO AUTISM3 Your Role as a ParentYour Child s Advocate When your child is first diagnosed, you will likely find yourself fulfilling many roles: care coordinator, therapist, Parent , teacher, etc. One of the most important roles you will have is serving as your child s advocate. Advocating for your child will be a lifelong journey that will require different skills depending on your child s her book, Everyday Advocate: Standing Up for Your Child with Autism , Areva Martin describes seven principles that can be applied to serve as an effective advocate for your child: 1. Take Responsibility - Be a leader 2. Learn - Be an expert 3. Think Critically - Be discerning 4.

10 Speak with Authority- Be proactive 5. Document - Be prepared 6. Collaborate - Be a team builder 7. Educate - Be a voice for your childMartin s book offers examples of each principle as it relates to real world activities that parents can do to advocate for their child with Your Other ChildrenParents of children with Autism can be under tremen-dous stress. It may seem like there is never enough time to do everything that needs to be done. So much focus and attention is placed on the child with Autism , that it is common for parents to have little time or energy left to focus on their other children. It is important to know that most families find a way to work together, grow stronger and learn ways to reduce the negative impact of the diagnosis and promote a positive future for their children and to Seek Professional HelpIf you are experiencing several of the following signs and symptoms over a period of time, you may want to seek professional counseling: You have trouble sleeping and don t feel rested when you do sleep.