An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn

by Rogers, Sally J.

  As with any other grieving process, it may take time to feel better. And even when the strong feelings of sadness subside over weeks or months, they may resurface temporarily, especially during events such as birthdays and holidays. Fortunately, these feelings don’t supplant the love you feel for your living, breathing child. This is still the same child you loved and treasured before the diagnosis, with unknown potential and a future that has yet to unfold. Your child’s learning, success, and happiness in life are as much in your hands as they were before the diagnosis. The future may look different than you had imagined it because your path is a new path, but there is still an unwritten future for your child.

  Depression and Anxiety. Grief is a normal condition, and feelings of anger, sadness, depression, and low self-esteem are all part of the grief process. However, for some people, these feelings do not resolve but deepen into chronic depression. According to the National Institute of Mental Health, symptoms of depression can include difficulty concentrating, fatigue, feelings of guilt and hopelessness, insomnia or excessive sleeping, irritability, loss of interest in pleasurable activities, overeating or appetite loss, persistent aches and pains, chronic sadness, and suicidal thoughts. Temporary, mild to moderate depressive symptoms can feel debilitating for the short term while you are adjusting, and you will need the help of friends and family as you go through these first few weeks or months after your child’s diagnosis. If, however, you find that your feelings of sadness, irritability, or anxiety are so intense that you cannot cope with daily life—can’t get out of bed, do the basics, care for the children, eat or sleep, stop crying, or have images of hurting yourself—tell your partner and your closest friends or family members, and call your doctor and let him or her know what you are experiencing. Your family doctor will be able to help you by providing medication and/or a referral for counseling. These are very helpful for dealing with depressive and anxious feelings. Don’t resist getting help. It is not a sign of weakness or being crazy. Everyone in your family needs you, and you need to be able to use your own personal resources to cope with your new path. Depression and anxiety can block you from using your own strengths and talents. If your chronic sadness or anxiety has lasted over 6 months, or if you have had thoughts of suicide at any point, we urge you to call your doctor and get help now.

  Parents of children with ASD are more likely than other parents to experience anxiety, perhaps because of the worries and the unknowns that come with parenting a child who has this diagnosis. Anxiety has several faces. It may include constant feelings of worry and fear (generalized anxiety); it may trigger repetitive, irrational, upsetting thoughts (obsessions); it may trigger repetitive actions linked to coping with irrational anxiety (compulsions); and it may take the form of panic attacks, which to some people feel like a heart attack. If you find that one or more of these symptoms is becoming part of your life, call your doctor. Anxiety disorders are very treatable with medication and behavioral strategies. Again, both anxiety and depression can prevent you from having the energy and creativity to do what is needed for yourself and your family. By voicing these feelings to your partner and others closest to you, and getting help from your doctor, you will be much more able to help your child and family.

  Building a Strong Social Support Network. Decades of research have shown that one of the most helpful things you can do to combat stress is to build up a strong social network. Building and using a network of family and friends who genuinely care about you will help buffer you from the negative effects of stress and give you people to turn to for help and support.

  Ironically, sometimes when a big challenge arises in our lives, we avoid turning toward our friends and family for support. We feel that others may not understand our problems, that they will be judgmental, that we are weak and should be able to take care of our problems by ourselves, or that we will become a burden on others. However, people who love you want to help you. It gives them an opportunity to show you that they love you. They will feel honored that you trust them enough to tell them about your feelings, fears, and problems and to ask for their help. It is a gift to a loved one to confide in him or her and ask for help. Give close friends and family the gift of being included. Few things feel worse than to learn that a person you love dearly has gone through a difficult time and you did not know and did not help. Give those closest to you the opportunity to be part of this new aspect of your life and your feelings. You will not feel so alone, and they will cherish being included.

  Cultivate and nurture your circle of friends and family by staying in touch however it works best for you: phone calls, emails, Facebook, or social gatherings. If you find that someone in your inner circle is adding to your stress by being negative, critical, or judgmental, or by refusing to accept the reality of the situation, avoid spending so much time with that person. Turn to the people who help you feel better—by listening and really hearing you without denying or rationalizing, by boosting your confidence, by providing sound advice, by accepting you for who you are, by being trust-worthy, and by encouraging you to engage in healthy behavior.

  • Do you have a strong social support network? Here are some questions adapted from the RAND Corporation Medical Outcomes Social Support Survey3 that can help you assess your resources. For each question, consider whether this is true all or most of the time, true some of the time, or never true.

  • Do you have someone you can count on to listen to you when you need to talk?

  • Can you turn to someone to give you good advice in your current situation?

  • Do you have someone to confide in or talk to about yourself and your problems?

  • Do you have someone with whom you can share your worries and fears?

  • Can you turn to someone who shows you love and affection?

  • Do you have someone who hugs you?

  If the answer was yes, all or most of the time, for many of these questions, then you have a strong social support network. If the answer indicates that you could use more support, keep reading.

  Parents of children with ASD often find it extremely helpful to talk to other parents of such children. Other parents who are more experienced can help mentor you and provide invaluable advice and information. Most U.S. states have an organization called Parent to Parent USA (www.p2pusa.org), which is a national nonprofit organization that provides parent-to-parent support and training. Parent to Parent USA is committed to providing emotional and informational support to families of children who have special needs by matching each parent seeking support with an experienced, trained “support parent.”

  Another way of finding a support group of parents who are in the same place you are is to visit the Autism Speaks website. Click on the “Resource Guide” section under “Family Services.” Then click on the state you live in on the map that is provided, and you will find a list of community and support networks, including support groups in your area. Support groups for parents of children with ASD and other special needs are often sponsored by local schools, intervention programs, churches or other religious institutions, and medical institutions. These are often listed in the newspaper and on the web. Try a computer search with “autism,” “parents,” and the name of your city as keywords; local parent groups are very likely to come up.

  If you can’t find a support group close to where you live, you can also consider joining an online social network. Autism Speaks offers the Ning Community, which hosts groups and discussion forums, as well as the ability for members to share information with one another within an active community of other parents of children with ASD. Another site sponsored by Autism Speaks is FriendFeed, which sponsors discussions and sharing of information about autism among parents and others concerned about ASD. To get information on both, click on the “About Us” tab on the Autism Speaks home page, and then on “Social Networks.”

  The bottom line is this: However you do it, cultivate and nurture a strong social network where you experience a sense of
belonging, self-worth, and security, and where you can ask for and get help and support. Don’t hesitate to lean on the people who care about you during your time of need. You, your family, and your child with ASD will reap the benefits both now and in the future.

  Spirituality. Spirituality also improves emotional health and can help people cope with difficult circumstances. In fact, spirituality is now considered by many doctors to be an essential part of medical care. In 2001, it was reported that nearly 50 medical schools offer courses in spirituality and medicine4 to new doctors in training. Spiritual practice can take many forms, including attending religious services, praying, meditating, doing yoga, taking a nature walk, singing, reading inspirational books, and listening to music. Because spirituality has been found to improve physical and emotional health, we encourage you to take a moment to identify things or activities in your life that give your life meaning and that provide you with inner strength and comfort. Then consider including spiritual activities with your partner as a regular part of your new journey.

  In this chapter, we discussed some of the stresses and strains that come with parenting a child with special needs. We also want to emphasize that recent studies have shown that many families adjust quite well to having a child with special needs. Families are often very resilient and respond with strength and determination. They don’t just survive the challenge but actually thrive. A review of studies on family adjustment by Hastings and Taunt5 found that parents often had very positive attitudes about their child and the new situation they were facing. Parents reported that they derived pleasure from parenting their child and saw their child with special needs as a great source of joy. Learning to help their child gave them a sense of accomplishment and purpose in life. Parents sometimes reported that their marriage was strengthened. Finally, they said that having a child with special needs had led to a deeper awareness of spirituality and greater perspective on what is important in life. We hope that some of the suggestions in this book will promote resilience in you and your family.

  To conclude this section, let’s review the suggestions for taking care of your emotional health. These suggestions are based on studies6 of parents of children with special needs who have developed effective strategies for coping with stress and have continued to thrive and experience happiness:

  Identify a specific goal or challenge and start working to achieve it. Research has shown that addressing stress by defining specific challenges and developing a plan for addressing those challenges helps reduce stress and create a sense of confidence and self-esteem. The goal could be as simple as spending 10 minutes of interactive time with each person in your family most days, or getting your child into an intervention program in the next 12 weeks, or finding a babysitter who can give you a night out once or twice a month.

  Take control. Studies have shown that stress results when you feel your life is unpredictable. You may feel that you have no control over your life right now—that everything depends on someone else—but that’s not true. Recognize that you have some control over your life right now. Figuring out what you have control over, setting goals in those areas, and acting on them will not only solve some problems, but will also prevent you from feeling powerless. What if you make a mistake? It’s not the end of the world. You can make a different decision. Think it through, look at the results, get some advice from people you trust, and if you made a mistake, then undo it and make a different decision. Mistakes are fixable. Action feels much better than doing nothing, and action leads to outcomes.

  Take a break. You may feel that you must spend every waking minute focused on your child and others in the family, but taking a moment to focus solely on yourself will help recharge your energy and help you keep perspective. Even if only for a short period, taking time to do the things that give you pleasure and are restorative will reap benefits not only for your emotional health, but for that of others in your family as well.

  Share caregiving responsibilities with others. Find others who can help with these responsibilities, whether these persons are family members, day care providers, other parents, or friends. Studies have shown that parents whose children participated in a day program that the parents trusted and had confidence in felt happier and were less stressed.

  Reach out to others. As we have discussed earlier in this chapter, establishing a reliable, loving, accepting group of people who care about you and are willing to listen and offer support is a key to maintaining emotional health. Research has shown that forming relationships with other parents who are experiencing similar stressful situations improves the emotional health of those parents.

  Pat yourself on the back frequently. Take a moment now and then to think about all you are accomplishing, and give yourself some positive feedback! Pride yourself on reading this book, seeking an evaluation for your child, balancing the needs of your family, and so much more you are doing. You will learn about inner strengths that you and your partner have that you had never seen before. You will experience joys that you never would have shared. You are on a different road from the one you expected, but it is taking you to new opportunities for learning, sharing, and building relationships. Jot down some of the things you are learning from time to time—to see where you have come and how you have grown in the face of stress.

  Of course, you will need some new skills to build your sense of control and competence in your new role as a parent of a young child with ASD. We have written this book to provide you with skills that should help you in your new role. We hope the strategies you’ll learn in Chapters 4–13 of this book will help you see what a difference you can make to your child with autism by building on the ways you already interact with your child during your typical routines, without having to add hours of work for yourself. Combining this with the experience-backed advice of the professionals who help you with your child’s intervention program will give you the skills and confidence you need for the challenges of your daily life.

  ________________________

  1“Marital relationship” in this chapter refers broadly to your relationship with your partner or significant other, whether you are officially married or not.

  2Hartley, S. L., et al. The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449–457, 2010.

  3Based on the RAND Medical Outcomes Study Social Support Survey. Available at www.rand.org/health/surveys_tools/mos/mos_socialsupport_survey.html.

  4Anandarajah, G., et al. Spirituality and medical practice: Using HOPE questions as a practical tool for spiritual assessment. American Family Physician, 63, 81–89, 2001.

  5Hastings, R. P., & Taunt, H. M. Positive perceptions in families of children with developmental disabilities. American Journal of Mental Retardation, 107(2), 116–127, 2002.

  6Murphy, N. A., et al. The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33, 180–187, 2007. Raina, P., et al. Care-giving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4, 1–14, 2004.

  3

  How Your Early Efforts

  Can Help Your Child Engage with Others

  and Boost Your Child’s Learning

  Terell, age 2, was recently diagnosed with ASD. His parents, Patricia and James, are meeting with the doctor who conducted the evaluation, and they mention that one of the most frustrating things for them is Terell’s difficulty communicating. They find it very hard to know what he wants or needs and are always guessing why he is upset. Is he hungry or tired? Uncomfortable or in pain? If only he could just point to what he wants, instead of erupting in a tantrum that seems to come out of the blue! When his mother tries to talk with Terell, he seems to ignore her and often pulls away. Patricia and James are feeling helpless and frustrated.

  No doubt you’re having experiences something like these. In this case, the information in this book should give you so
me very useful tools to help your child with ASD communicate and learn, and in turn to lessen your (and your child’s!) frustration. That’s because it’s based on decades of research and clinical practice with young children with ASD—experiences that have informed us about how and why good early intervention works. Your use of our techniques will be enhanced when you know what’s behind the strategies, so this chapter is intended as a foundation for the rest of the book.

  HOW YOUNG CHILDREN LEARN

  In most cases the communication difficulties associated with autism begin very early, long before speech develops. Sometimes a child will begin to communicate, but then loses those skills in the second or third year of life. Young children with ASD are often unaware that messages can be sent between people, from one mind to another, through thin air, by using our eyes, body movements, and speech sounds. The child with autism sees these movements and hears the speech sounds, but doesn’t know there is meaning behind them—a message to be read.

  If you think back, you might have seen the beginnings of your child’s autism when your child was still a baby. For some children, the differences in behavior are easy to notice; for other children, the differences are subtle and easily missed. Still other children with ASD don’t seem to have any difficulties during their first year of infancy, but develop autism symptoms later. Studies by one of us authors (G. D.) examined parents’ home videotapes of babies who later developed autism.1 These videotapes showed Dawson and her colleague Osterling that by 8–12 months of age, these babies as a group spent less time looking at other people, responded less when their parents tried to get their attention (by calling their names), and did not use the early gestures (like pointing) that babies typically use before words develop and that help them progress into speech. Thus the way these babies experienced their environments was very different from that of most babies; they spent less time focused on other people and had much less experience with communication. This is important, because during the infant–toddler years a baby’s brain is changing rapidly, soaking up information and being shaped by that information. Babies’ brains are not fully programmed by their genes. The brain is developing quickly, and every experience a baby has affects his brain’s wiring and builds more circuits that can carry more information, more efficiently. As scientists put it, there is a great deal of brain plasticity early in life.