Navigating The Journey

Following the recommendations and using the knowledge in this book will help you to navigate your journey successfully. Your child will make progress and you will value and enjoy every new milestone. You will experience unconditional love and patience. You will have great joy in your life. You will love your child for his or her unique personality and perspective on life. Your child is different, but not “less.” Embracing your child’s differences will open your heart and mind to new possibilities and pathways. If your child has not been diagnosed officially yet, you must have your child evaluated as soon as possible. Early diagnosis and treatment will help to significantly improve your child’s prognosis and future. You must understand the negative effects of your child’s autism on your whole family and how to avoid them as much as possible. Surround yourself with people who “get you” and your family. You need support. Fight the urge to isolate yourself and your family. Create and maintain a healthy marriage. Explore all treatment avenues, such as medications, therapies, and complementary and alternative medicine (CAM) treatments as appropriate. Do not be afraid to consider medications. Find a provider you trust who is an expert with ASD. For your child to be successful, you need to become very familiar with the educational system and be an advocate for your child at school. You also need to be adept with legal issues of guardianship and other long-term planning issues such as the special needs trust. Lastly, you need to find acceptance and may need to explore issues of spirituality and religion. Since my daughter’s diagnosis 10 years ago, I have found great joy in raising her. I appreciate and love her for who she is every day. My family would not be complete without her. Not a day goes by that she does not make me laugh. She has given my life great purpose and fulfillment, and I have no doubt that you feel the same about your child. I am amazed at the progress she has made.

Assessment and Diagnosis of Autism Spectrum Disorder

The assessment and diagnosis phase of autism spectrum disorder (ASD) is a very difficult time for the parent. You will likely feel completely bewildered. You will be filled with many mixed emotions such as love for your child and fear for your child’s future. You may feel like your heart is breaking. But I can tell you, you are going to make it through this—just like I have. You will likely have to overcome significant denial to even discuss the unusual signs or symptoms that you have noticed in your young child. You may be afraid to hear the term “autism” come from your pediatrician’s mouth. However, you are about to start a very important journey with your child. You have to be strong in order to obtain for your child vital treatments and therapies that can dramatically improve your child’s life and future. Theoretically, ASD is not difficult to recognize and diagnose. However, in practice, it can be challenging. The full spectrum of symptoms included in ASD is quite wide. One child may appear quite typical with only minor eccentricities while another has significant intellectual disability, social impairment, self-injurious behavior, and aggression. No two individuals with ASD are exactly alike. In fact, individuals with autism are often more different than similar. We cannot easily pigeonhole or stereotype our children. Further complicating diagnosis, professionals often have little training in ASD, even in fields that have autism within their scope of practice. Furthermore, children with more subtle ASD symptoms or those who are “high-functioning” (more verbal and with more capabilities in general) do not always have symptoms that are evident at a very young age. At times, autism symptoms may not be identifiable until social problems become more significant as the child grows older. Primary care physicians are not typically able to spend long enough with your child during visits to pick up on the sometimes subtle signs needed to alert them to a possible ASD diagnosis.

A Mother’s Perspective on Autism

From the moment you discover that you are going to be a parent, the hopes, dreams, and expectations you have for your­self and your child flood your mind. No matter how your child is to arrive, your heart is full of hope and promise. You begin to let yourself plan your future. Will your child become president, a doctor, a lawyer, work in the family business, or win the Nobel Peace Prize? Will he or she possess a special talent or skill? Your mind wanders and daydreams of all that is to come. The moment they place your beautiful child in your arms, you realize that there is no greater feeling. You are in love. There is no feeling deeper or grander. The unimaginable joy and gratitude for the blessing of your child is overwhelming. We all know those moments where your heart surged out of your body in awe of the blessing you were given. You may have even asked yourself, “How did I get so lucky?” I can relate. The moment they placed my daughter in my arms for the first time, I knew I had a greater purpose. I would not find out how much for another two years. I devoted myself to her; her care, her introduction to the world, and to the very amazing person I knew she would become. I gave everything of myself tirelessly to her. Her every whimper, cry, or gesture was met with a response. I could anticipate her needs and wants before she fully expressed them. I thought I had an undeniable bond with my daughter. I did. I had a bond that needed no words. That was the problem: we did not need words. If you are like me, you noticed at first subtle differences in your child, and then later there were glaring and alarming indications something was not developing correctly. But, no matter your education or your intelligence level, denial can be a powerful thing.

Long-Term Planning and Legal Issues

Please be aware that I am not an attorney and the following information should not be considered legal advice. The information contained in this chapter is what I have learned as a parent of a child with autism spectrum disorder (ASD) and as a doctor trying to help those with ASD navigate complex legal and financial decisions. I recommend all parents of children with ASD develop a relationship with a licensed attorney with experience in special needs in their jurisdiction. As this chapter details, there are many different legal issues you and your child may encounter as your child matures into adulthood. Having an attorney who is familiar with your specific situation and your child can be very reassuring should legal needs arise. If you have the financial capacity to place some funds in a retainer with an attorney so that they are available any time you need for a quick e-mail, phone call, or text message, it is often worth the expense and peace of mind. Parents can usually locate attorneys with experience in special needs by contacting their local bar associations, many of which maintain formal referral programs. Also, many autism support groups maintain lists of attorneys who specialize in various aspects of the law relevant to children with ASD. Your child’s medical providers may also be able to provide referrals. If you are like most parents of a child with ASD, you are over­whelmed with even the thought of long-term planning. You are likely thinking, “It is hard enough making it day by day, let alone considering long-term planning.” The truth is that most of us avoid thinking of the future because it is too frightening and uncertain. There is also little guidance from healthcare professionals on this very complex issue. However, much relief can be found in achieving a plan for your child’s future. Do not wait. It is important to talk with a financial planner when your child is young.

The Educational System and Autism Spectrum Disorder

Navigating the educational system is likely the most treacherous and frustrating part of raising a child with autism spectrum disorder (ASD). Often parents feel that they have to be lawyers to understand the rights of their child and to advocate for appropriate resources at school. I know firsthand how difficult this can be. I can honestly state that next to a child’s severe tantrums, this is the most frustrating and pervasive problem parents may encounter. Typically, year after year and IEP (individualized education program) meeting after IEP meeting, the battle for even substandard education and services continues. Parents naturally assume that the school system would have to maintain certain standards and provide appropriate education and therapies for their child. One might even believe that the special education teacher, and the school district itself, would be more expert than the parent. Unfortunately, this is rarely the case. Training, especially specific to ASD, is usually quite poor. Aside from some very caring teachers, the system is often set up to fail the child. The school district likely saves money by refusing to provide additional services, modifications, or accommodations for your child. Typically, neither the school district nor the teacher will offer new services or resources to be expended on your child unless it is in their best interest. In most cases, you will have to fight for every resource you can get for your child. Do NOT be passive. Educate yourself about your rights and the possible resources available to your child. Talk to other parents in the autism community about the resources their children are receiving. Like many parents, I too at first felt that being profes­sional and “nice” was the best way to get my child “good” services. I thought, “You catch more flies with honey than vinegar.” Unfortunately, this naiveté did not pay off: things only worsened with this approach. It was not until we learned more about our rights as parents and challenged the school system that things improved at all.

Non-Medication Therapies for ASD

There are a multitude of nonpharmacological (non-medication) therapies for autism spectrum disorder (ASD). These therapies generally have mainstream acceptance, especially compared with the complementary and alternative medicine (CAM) treatments mentioned in Chapter 7. Unfortunately, some of these non-medication therapies have little scientific evidence to support their effectiveness. Even those therapies that have some proven efficacy, and likely do work, are based on low-quality studies. Much more research is needed to prove that these therapies improve the symptoms of ASD and associated symptoms, and further studies are needed to differentiate in which children these therapies work best, the necessary treatment frequency and duration, and how young to begin these therapies. It is paramount that you be vigilant in researching and choosing the best therapy for your child. Many people are more than happy to take your money, and they know that you are vulnerable. Although many of these non-medication therapies are far from dangerous, wasting your time and money on the wrong therapy is harmful to your child and your family. The younger your child starts therapy or interventions, the greater the improvement is likely to be and the larger the impact on your child’s future. Thus, if you waste this window of opportunity on the wrong treatment, you will harm your child’s future. Luckily, there is sound evidence to support some of the therapies we will discuss. Applied Behavioral Analysis (ABA), as well as the behavioral interventions in general, has the best evidence to support its use in improving ASD symptoms in your child. Behavioral interventions for ASD are the most available and utilized category of nonpharmacological therapies as they are based on learning principles that are quite logical and evidence-based. One of the most widely recognized behavioral interventions/therapies is ABA, a type of therapy that uses learning and behavior techniques and principles to bring about positive changes in behavior. ABA is effective when applied to academics, adaptive skills, social skills, vocational skills, and communication. The goal of ABA therapy is to increase new skills and decrease problem behaviors.

Complementary and Alternative Medicine Therapies

Complementary and alternative medicine (CAM) is the collective term used for treatments or therapies that have not typically been part of Western medicine. The “complementary” part of this term means that the treatment may be used along with more conventional medicine, while the “alternative” component of the term implies that it may be used in place of traditional medi­cine. Most people in the United States choose not to forgo Western medicine and instead combine CAM and conventional medicine, preferring the term “integrative medicine” over “complementary and alternative medicine.” CAM purports to focus on the whole person, including the physical, mental, emotional, and spiritual components of health. A wide variety of treatments can fit under the umbrella of CAM treatments for autism spectrum disorder (ASD). In this chapter, we will discuss many of these treatments and the evidence base for them. According to studies, 50% to 75% of children with ASD are treated with CAM therapies. Even higher percentages of children with more severe ASD or intellectual disability are treated with CAM. Parents are also more likely to use CAM treatments if the child has seizures, gastrointestinal symptoms, or a behavioral disorder. Parents believe that these therapies are more accessible and less invasive. Most parents are more comfortable when they hear that a treatment falls under the CAM category because they believe it is more “natural” or safer (1,2). CAM therapies have varying degrees of efficacy and safety data. These different CAM therapies fall under the larger categories of nutrition/dietary interventions, immunomodulation, biochemical and metabolic therapies, detoxification, manipulative and body-based practices, music therapy, sensory integration therapy, hippotherapy (horseback riding), dolphin swim therapy, hyperbaric oxygen therapy, and so forth. It is beyond the scope of this book to discuss each therapy in extensive detail, but I will give an introduction to each type of CAM treatment and then discuss the more important and controversial treatments (2).

Psychopharmacology: Should I Use Medications for my Child?

There are numerous ways that a child might first present to a child psychiatrist. Most patients who present to my office are referred by pediatricians or therapists because the parent or the professional suspects that the child has autism spectrum disorder (ASD). Sometimes, parents bypass the primary care physician and present directly to whomever it is that they perceive to be the expert on ASD: this could be a developmental pediatrician, child psychiatrist, child psychologist, or child neurologist. Other times, they present their child to me as a “last resort” because they do not know what else to do and are reluctantly considering medications. These parents may have been in denial, avoiding diagnosis altogether, or their child may have already been diagnosed with ASD and they have been avoiding a discussion of medications. The first question I expect that most parents would ask is, “Can medications cure autism?” However, most parents seem to already understand that the answer to this is, “No.” Although medications cannot cure ASD or even technically treat the “core symptoms” of autism, they often do treat some of the most problematic and impairing symptoms associated with ASD. For example, to the parent who is desperate for relief from severe tantrums (“meltdowns”), aggression, irritability, and/or self-harm behavior, an atypical (second-generation) antipsychotic medication can seem like a miracle despite the fact that it is not curing the underlying autism. Although we will discuss atypical antipsychotics in detail further in this chapter, briefly they are a class of medications approved by the U.S. Food and Drug Administration (FDA) that help to treat tantrums, aggression, and other symptoms associated with ASD. A multitude of impairing symptoms and comorbid disorders are associated with ASD, and many of these symptoms can be treated with medications. I will mention studies throughout this chapter so that it is clear that I am not speaking only from my personal and professional experience but also from real data.

Autism’s Effect on the Whole Family

The impairments associated with autism spectrum disorder (ASD) not only affect the individual with ASD, but also dramatically impact the parents, caregivers, family, teachers, school system, peers, and the community in general. The overall responsibility is great and felt by everyone who comes into contact with the individual with ASD. In this chapter, we will focus on ASD’s effect on the family. First, we will discuss what is known about how ASD typically impacts the whole family. Second, we will discuss how this family impact causes a reciprocal negative effect on the child with ASD, which may then diminish positive outcomes of interventions. Lastly, we will discuss the extent to which parental involvement is needed during treatments or interventions. I will show how certain interventions may reduce stress and the negative effects on the family and the child with ASD. It is my intention and hope that a discussion of what is “normal” in families affected by ASD will provide you with a greater understanding of ASD and the recognition that you are not alone in dealing with these challenges. This should lessen your sense of isolation and allow you to feel that your family dynamic is less “odd” and unique than you likely currently feel. As knowledge is power, some of the latest evidence and research will be shared. Being armed with this information will provide you with the confidence to tackle the typical difficulties associated with autism. You will learn how to be more resilient and avoid the most common pitfalls. The symptoms of ASD present a unique set of challenges for parents and the family as a whole. Thus, it is not surprising that research in this area indicates that caregivers of those with ASD have decreased parenting efficacy, or a reduced belief in their own parenting skills. These caregivers also have more parenting stress and increased mental and physical health problems. This is true even in comparison to the caregivers of children with other developmental disorders.

What Causes Autism?

The amount of research being done in autism spectrum disorder (ASD) has grown exponentially in recent years, leading to rapidly changing data and statistics. As a result, our understanding of autism is constantly evolving. This makes it difficult for professionals and families to keep up. However, the ever-increasing pace of new developments offers us all hope. There is hope for better understanding of ASD by professionals and for more effective treatments. And there is always hope for a “cure” or at least a plan for the prevention of autism in the generations to come. The most recent statistics speak to the urgency in solving the autism “puzzle.” There have been dramatic rises in autism since at least the late 1980s. Based on the latest available data, which are from the year 2010, the Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children in the United States has ASD, with the biggest increase in cases being among the higher-functioning patients, African Americans, and Hispanics. However, based on the data from the year 2000, the prevalence was 1 in 150. This is certainly a frightening jump in prevalence over a 10-year period. Some postulate that this is simply due to better diagnosis, although many studies do not support this. In a previous year, when the data showed that 1 in 88 children had ASD, the CDC noted that ASD was more prevalent than the childhood diseases of AIDS, cancer, and diabetes combined. Typically childhood cancer and diabetes have gotten more attention than autism, at least until recently. But this statistic helps to put the number of children and families affected by autism into perspective (1). A surprising government survey conducted in 2014 suggests that 1 in 45 U.S. children ages 3 to 17 have been diagnosed with ASD. This is quite a bit higher than the CDC’s 1-in-68 figure, but because the new data came from a parent survey, the 1-in-45 figure has not replaced the CDC’s number.