Understanding Autism Spectrum Disorder A handbook designed with parents in mind Italy??? I’m often asked to describe the experience of raising a child with a disability to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…. When you’re going to have a baby, it’s like you’re planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s David. The Gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says “Welcome to Holland!” “Holland?!?!?!?!?!” you say. “What do you mean Holland?? I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland, and there you’ll stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole group of people you never would have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts. But everyone else you know is busy coming to and from Italy. They’re bragging about what a wonderful time they had there and for the rest of your life you will say, “Yes, that is what I had planned”. And the pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, the very lovely things about Holland. Washington State School for the Deaf 1 Table of Contents I. The Stages of Normal Grief and the Family II. What Is Autism Spectrum Disorder? III. Characteristics of Autism Spectrum Disorder IV. Your Family & Autism Spectrum Disorder Siblings Interaction with the Community V. Working with Professionals VI. Educational Programming/Treatment Options VII. IDEA and Your Child’s IEP VIII. Other Related Resources Frequently Occurring Diagnoses & Conditions Recommended Books for Parents & Families Helpful Websites for Information About Autism Spectrum Disorder 2 I. The Stages of Normal Grief and the Family 3 The Stages of Normal Grief and the Family No two children are identical, so having a label like autism spectrum disorder, cerebral palsy, cognitive impairment, or epilepsy does not mean your child will be like every other child with the same condition. No two families are the same, and so what applies to one family may not make sense for the next. Also, as families grow and age, their needs change. For each family, there will be a unique set of attitudes, beliefs, behaviors, and situations underlying their approach to raising a child with a disability. You should be aware that all parents go through the stages of grieving. It is perfectly normal to go through these stages, not just once, but many times. Although you love your child, you will grieve that this is not the child you dreamed of. Shock, Denial, Disbelief These feelings are nature’s way of protecting you from the reality of the news that your child has a disability. Perhaps you think he or she is going through a passing stage, maybe the doctor made a mistake in the diagnosis, or perhaps the test results were mixed up…anything that means your child doesn’t have a disability. This tends to be a short-lived stage. Guilt/Regret Most parents wonder if they did something wrong to cause this to happen. The most frequently heard statements start with “If only I had…” All of these are thoughts, which you may or may not share with others. You may also question whether you could have changed the situations. Remember that we cannot change the past, but we do have control over much of the future. Anger, Hate, Blame, Terror, Rage, and Jealousy These are explosive emotions that you may feel. Although it is not logical, it is easy to blame others in this stage. These feelings are usually in reaction to the underlying feelings of pain, helplessness, fear, and hurt. All of these feelings are perfectly normal and must be expressed, not repressed. Expressing the feelings by talking them out is the key. Repressed explosive emotions lead to feelings of chronic low self-esteem, depression, guilt, and physical complaints. Having these feelings for an extended period of time may indicate the need to be seen by a trained therapist. 4 Loss, Emptiness, Sadness, Depression When you imagined your life, chances are that, you never dreamed about having a child with any problems. Yes, your child is alive, but he or she is not the child you dreamed of. Part of the grieving process is to mourn the loss of the child that you expected to have. Your sadness may be responded to, by those around you, with “It could be worse” scenarios. Allow yourself to be sad! You have every right to feel loss, emptiness, and sadness. Generally periods of sadness will be greater at certain times than others. If feelings become overwhelming, it may be classified as clinical depression. Symptoms such as sleep dependency, lack of concentration, and a sense of losing control warrant a therapist or doctor’s attention. “Pain becomes bearable when we are able to trust that it won’t last forever, not when we pretend that it doesn’t exist. “ -Alla Bozarth-Campbell Acceptance As parents of a child with special needs, you may be relieved to know that you will come to terms with the fact that your child has certain limitations. You may even feel, in looking back, that the challenge has made you stronger as a person and has strengthened your family. It is important to note that you will go through these stages more than once, in any order, and with varying degrees of intensity. Birthdays, holidays, and special events may all trigger the cycle of grieving. Remember that communication is key. You may not be able to “cure” your child, but you can make a positive difference in his or her life. Autism is not the end of the world… just the beginning of a new one just open your eyes--- and see. -Sally Meyers 5 II. What Is Autism Spectrum Disorder? 6 What is Autism Spectrum Disorder http://www.nationalautismcenter.org/pdf/NAC%20Ed%20Manual_FINAL.pdf As many front-line interventionists know, autism is characterized by severe difficulties in communication, socialization, and behavior (Klinger, Dawson, & Renner 2003). What this means it that for each individual child difficulties vary based on each one’s cognitive ability, communication skills, and adaptive functioning. Symptoms must be present before the age of three, and must affect the child’s functioning in more than one area of concern (i.e., home, school, or community). Moreover, symptoms cannot be better accounted for by other disorders associated with attention, behavior, thought processes, medical concerns, or mood. It can be found in all cultures of the world, and does not discriminate based on race, socioeconomic status, education of parents, or other demographic variables (Wong, Hui, & Lee, 2004; Howlin & Asgharian, 1999). Autism is three to four times more common in boys than in girls. It currently has no known cause or cure. Examples of symptoms of Autism Spectrum Disorder in the communication domain include: The child must have a delay in or absence of language. The child does not compensate for a delay in language by using strategies like gestures to communicate. The child may exhibit problems with language, once language starts to develop. He may repeat phrases he has heard on television or from his parents or friends (echolalia). The child may immediately echo the speech of another individual (echolalia). The child often has trouble initiating and maintaining conversations with peers. She may also find it difficult to start and stop conversations. The child often has significant difficulty with, or cannot respond to, open-ended questions. The child may exhibit significant delays in play skills. Examples of symptoms of Autism Spectrum Disorder in the social domain include: The child may poorly modulate eye contact. The child may have a blank expression, or difficulty expressing a range of facial expressions. The child may be capable of displaying many different facial expressions, but still fails to convey his emotional state to others. The child may have difficulty incorporating nonverbal communication in his 7 speech or social interactions. Most people talk with their hands, make subtle movements with their eyes and head to indicate the conversations should continue or end, and engage in other slight nonverbal gestures as a way of communicating. In fact, 80% of communication is nonverbal in nature! Most children with autism do not know how to use gestures effectively. These children may not realize the significance of specific gestures, and may therefore use them inappropriately. The child may have significant problems making and maintaining friendships. A younger child with autism will often play alone or have difficulty joining group activities.