Parent s Guide to Autism
Facing Autism If you have picked up this booklet, chances are your family is facing autism for the very first time and you may be overwhelmed, confused, and scared. Autism can be a frightening word and it brings up difficult pictures in your mind. You might not know what to think or believe, you may not even want to accept that your child could have autism. While there is no known cure for autism, the capacity to learn and develop new skills lies within every child. More than ever before, children with autism can be helped. Through available therapies, it is possible to greatly improve the day-to-day lives of children and adults with autism. The sooner you begin, the more effective treatment will be for your child. This booklet is a resource guide for you to understand what autism is and give you some basic strategies for dealing with it. It is not a complete explanation but will give you reliable up-to-date information and a few ideas you can use right away to start making life a little easier. 2
What is Autism? Autism is a neurological disorder that affects the way a person s brain works and can cause people to have unusual traits and characteristics. People with autism struggle to communicate, form relationships, and respond appropriately to their environment. While people with autism share certain characteristics, no two people with autism are alike, thus they are often referred to as autism spectrum disorders or ASD. There is a wide range of levels and skills. Symptoms also present themselves in a wide variety of combinations creating the uniqueness of each person. However, everyone with ASD shares common traits such as difficulties with: Social interactions Communication skills Repetitive behaviors Limited interests Autism Spectrum Disorders include the following diagnoses: Autistic Disorder Asperger s Disorder Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) Childhood Disintegrative Disorder Rett s Disorder The first three diagnoses listed above are the most common while the last two are very rare. PDD-NOS is diagnosed when some characteristics of autism and/or Asperger s are present but not all criteria are met. Children with autism do not follow usual patterns of development although onset of symptoms may vary. In some cases, problems may be apparent from birth, but oftentimes, symptoms become more obvious as the child approaches developmental milestones, usually before age three. Asperger s Disorder may not be noticed until much later in childhood. The Centers for Disease Control (CDC) estimate that 1.5 million Americans are believed to have some form of autism. Autism knows no racial, ethnic, or socioeconomic boundaries. It is found in every region and country of the world. It is more prevalent in males than females. 3
4 Possible Signs and Symptoms of ASD Facing Autism? This list is intended to help parents identify potential signs of autism. Each child with autism is unique and will experience various combinations of signs and symptoms. If you have picked up this booklet, chances are your family is facing autism for the very 1. first Social time and Relationships you may be overwhelmed, confused, and scared. Autism can be a frightening Lack word of a and social it brings smile up difficult pictures in your mind. You might not know what to think or believe, you may not even want to accept that your child could have it. Smiles or laughs at inappropriate times While there Avoids is no social known situations cure for autism, the capacity to learn and develop new skills lies within Prefers every not child. to be More hugged than or ever touched before, OR children craves with excessive autism touch/hugs can be helped. Through available therapies, it is possible to greatly improve the day-to-day lives of Avoids or displays an unusual use of eye contact children and adults with autism. The sooner you begin, the more effective treatment will be for Does your not child. want to be comforted Lacks awareness of OR acute awareness of other people This booklet and/or is their a resource environment guide for you to understand what autism is and give you some basic strategies for dealing with it. It is not a complete explanation Fails to greet and/or respond to others but will give you reliable up-to-date information and a few ideas you can do Struggles playing or interacting appropriately with same-age peers right away to start making life a little easier. Lacks or is limited in imaginative/pretend play Displays socially unresponsive or awkward behaviors; has difficulty figuring out what to do in social settings Needs an excessive amount of reassurance Has difficulty understanding another person s perspective Exhibits limited range of emotion or facial expression Struggles to initiate conversation or play
2. Communication Difficulties Experiences delayed language development Has poor language comprehension Has limited speech or is completely non-verbal Repeats words or phrases spoken to them or that they have heard in the past (Echolalia). Has an unusual manner of talking (ex. rich vocabulary, monotone or sing-songy quality) Fails to initiate or difficulty with reciprocal conversation Has difficulty with the use of abstract language and thinking May not understand or use non-verbal communication skills appropriately (facial expressions, tone of voice, gestures, body language) Struggles to appropriately express feelings or emotions 3. Stereotypical or Repetitive Behaviors Fixates on an object or toy (or parts of it) Is overly fascinated by specific topics or areas of interest Uses objects in an odd way: spinning or lining up objects Engages in unusual body movements: finger flicking, hand flapping, body rocking or spinning Displays unusual attachment to objects Struggles with transitions and/or changes in routine or environment Has unreasonable insistence on following routines or rituals Has an excellent memory OR difficulty remembering/processing simple directions or tasks 4. Associated Features Experiences difficulty in sleeping, eating, toilet training Exhibits sensitivity to or craves touch, sound, or visual stimulation Behaves either passivly or hyperactively Has unusual or extreme fears OR lacks fear or awareness of common dangers Has awkward movements/odd gait Do NOT use this list to diagnose your child! Only a licensed professional can give a diagnosis. 5
Facing How is Autism? Diagnosed? Parents If you have are picked usually up the this first booklet, to notice chances unusual are behaviors your family in their is facing child. autism They often for the very state first their time baby and seemed you may different be overwhelmed, from birth. confused, Others may and watch scared. their Autism child can develop be a frightening normally for word the first and year it brings or two up and difficult then pictures notice a in regression your mind. or You change might in not their know skills what and behavior. to think or believe, you may not even want to accept that your child could have it. While Autism there may is be no mistaken known cure for hearing for autism, loss, the emotional capacity disturbance, to learn and language develop new disorder, skills lies mental within retardation every child. or slow More development. than ever before, Many children with with autism can present be helped. with Through no physical available abnormalities. therapies, Children it is possible with ASD to greatly may not improve demonstrate the day-to-day symptoms lives that of children are easily and noticed adults in with a doctor s autism. office The and sooner as a you result, begin, are the often more not effective diagnosed treatment or will misdiagnosed. be for your child. This There booklet are no medical is a resource tests which guide detect for you autism. to understand A diagnosis what is based autism on is behavioral and give observation, interview, and a comprehensive review of developmental history. you some basic strategies for dealing with it. It is not a complete explanation but The will diagnosis give you is based reliable upon up-to-date an assessment information done by and a neurologist, a few ideas psychiatrist, you can do right psychologist, away to pediatrician, start making or life the a school little district. easier. An assessment such as the M-CHAT or the ADOS done by an autism professional can be a useful tool in the process of obtaining the diagnosis. 6
Early Intervention is the Key The sooner therapy begins, the more likely it will be effective. For children who do have autism, the earlier they receive intensive behavioral treatment, the more substantial their gains will be in communication skills, social abilities, and appropriate behavior. The most opportune time in which these positive outcomes can be achieved is when the child is between 12 and 48 months old. Progress can certainly be made outside this age range, but the research suggests that the earlier treatment begins, the more successful the child will be. When a child receives several years of early intervention, he has a greater chance of overcoming many of the obstacles associated with autism. This can begin even before an official diagnosis has been given. Parental involvement is also a major factor in the success of treatment. Parents are the child s earliest teachers so taking an active role in your child s development is crucial. Through special education, training and support, parents can take a lead role in the development of their child with autism and help them lead happy and productive lives. 7
Simple Things You Can Do Talk to Your Child Children with autism have a hard time understanding the sequence of events in their day. They also tend to do better when they know what to expect. Children with autism often need help transitioning between activities or places. Let them know what events are scheduled for the day. Prepare them for any changes in their routine or their schedule as soon as you can. Help your child with transitions between activities. Before you end an activity, let them know it is almost time to stop and let them know what will come next. Then, count down (5, 4, 3, 2, 1, all done) to end the activity. Use Visual Strategies Children with autism are often visual learners and thinkers. Develop a visual schedule; review it throughout the day and mark off activities as they are completed. Use words, pictures, symbols, or a combination to get your message across. When Then Statements These are called contingencies. They can help motivate your child. Give your child a direction and then tell him what will happen once he has followed it. For example: When you put away two more toys, then you can play outside. It is important when using a contingency to be specific and follow through! Catch Them Being Good Provide praise and/or preferred items when you see good behavior. This is one of the best ways to motivate your child to repeat the desired behavior. Provide the positive reinforcement as soon as possible after he completes the activity. Be specific when praising your child; tell him exactly what he did well. For example Great job putting your toys away! or, I like the way you re staying with me. 8
Offer Choices Choice is an important aspect of a child s life that helps him feel a sense of control. If you want your child to get dressed, give him two options (both of which are ok with you) and allow him to choose. He picks one and you both get what you want. Provide many choices throughout the day, but don t give him a choice when there is no choice ( It s time to get ready for bed. NOT Are you ready for bed? ). Know Your Environment Children with autism spectrum disorders may have very little awareness of common danger. Watch out for excessively noisy or crowded environments that could overstimulate your child and cause unwanted behavior. Be attentive to your child s behaviors and tendencies that may be dangerous. Communicate Effectively Children with autism will often communicate through their behavior. Have your child use appropriate communication to ask for what he wants. Take the time to figure out what your child is trying to communicate. Remember, some behavior may be due to illness or pain. Recognize Your Child s Strengths Every child has skills. Find your child s strengths and try to build upon them. Encouragement and praise will help your child continue to learn and grow. Use Your Child s Special Interests Allow for special interests, such as: trains, cars, movies, dinosaurs, etc., which can be used as motivators/ reinforcers for positive behavior. Let him know that after he picks up his toys, he can watch his favorite show. If you are working on conversational skills, use his favorite area of interest as the topic of conversation. 9
Why should I contact TouchPoint? At TouchPoint we see parents daily who are overwhelmed, confused, and who have questions. Often they know something is wrong but they do not know what to do about it. The internet can be misleading and often websites only provide pieces of what you need to know. Conflicting or inaccurate information may cause confusion or even fear. If a doctor or teacher suggests that autism is a possibility, you should contact TouchPoint Autism Services. You will find help for you and your child as well as hope for the future. Each child with ASD is different; we can help you identify what types of treatments, services, and supports will be most beneficial for you and your child. We can also help you navigate through all the information, treatment options, funding sources, and other resources or systems you may encounter. TouchPoint has been providing effective treatment for people with autism for more than 35 years. We offer a variety of clinical therapies, supports, and behavioral training services for parents and families. From assessment and parent training to adult services and supported employment, we strive to be the single touch point, a place where families can receive all of the services they will need through the course of their child s life. Remember, parent testimonials and internet information are not the same as research and hard evidence. Be careful who you trust and what information you read. TouchPoint has been in the field since 1970 and has earned a reputation for excellence in autism treatment. 10
We are Your Single TouchPoint for Help and Hope We can help you navigate the many resources available to you and your child which may include: Medical professionals Educational Services Advocacy Services Department of Mental Health First Steps Parents as Teachers Family supports and Clinical Services TouchPoint Autism Services Offers*: Assessments Training: Parent Training, Workshops and In-services Consultations, Observations, IEP Advocacy Adult Services Individual Support, Respite, Social Groups for Teens and Adults Clinical Therapies including: Applied Behavior Analysis (ABA), Speech/ Language, Music, OT/Sensory Issues, Social Skills Groups Educational Services Residential Services * services may vary by location 11
To request more information or to schedule a service, please contact us. St. Louis Offices 1101 Olivette Executive Pkwy St. Louis, MO 63132 P 314.432.6200 F 314.849.2721 3601 Weber Road St. Louis, MO 63125 P 314.385.5373 F 314.385.7896 Central Missouri Office 107 Waugh Street Columbia, MO 65201 P 800.675.4241 or 573.874.3777 F 573.874.3880 Southeast Missouri Office 611 North Fountain Street Cape Girardeau, MO 63701 P 573.339.9300 F 573.339.7964 Southwest Missouri Offices 1740 S. Glenstone, Suite S Springfield, MO 65804 P 800.420.7410 or 417.890.1399 F 417.890.1775 1211 S. Illinois Joplin, MO 64801 P 417.781.3616 F 417.781.4190 Email: admissions@touchpointautism.org 12 www.touchpointautism.org