The shock of finding out your child has autism is life-changing for most parents. But new findings show parents can fare well emotionally and still have a strong bond with their child.
Studies into the coping skills of mothers of children with autism confirm that they are more likely to report "poor or fair" emotional and mental health than other moms, but they are also more likely to show remarkable strengths.
These findings, published in the journal Pediatrics, come from a nationally representative survey of almost 62,000 mothers of school-aged children, including 364 mothers of children with autism. Researchers concluded that moms of children with autism were just as likely as other moms to report having a close relationship with their child and five times as likely to do so as mothers of children who had other developmental problems (not including autism).
Autism and other pervasive developmental disorders (or PDD) typically begin before age 3. They are a complex group of developmental disabilities marked by great difficulty in social interaction and communication. Difficulties on the spectrum range from mild to severe.
If your child has autism, you know how this developmental disorder can disrupt every part of your life -- your relationships, physical and emotional health, and career aspirations. But there is hope and help. Consider the following strategies as you tackle the special challenges and receive the unique joys of parenting a child with autism.
1. Learn All You Can About Autism
You can't "catch" autism. You either have it or you don't. And today, about one in 68 children has been diagnosed with autism or an autism spectrum disorder. ASD which encompasses several related disorders, such as Asperger's syndrome. They are all complex developmental disabilities that affect the development of a child's social skills, communication skills, and behavior.
Autism spectrum disorder (ASD) is usually detected during a child's formative years, so experts know that early diagnosis, intervention, and treatment are the keys to helping young children with autism develop to their full potential. The primary goal of autism treatment is to improve the overall ability of the child to function.
Because autism symptoms and behaviors often change over time, treatment strategies are tailored to the child's needs and available family resources. In general, however, children with autism respond best to highly structured and specialized treatment. A program that addresses helping parents and improving communication, social, behavioral, adaptive, and learning aspects of a child's life will be most successful.
Talk to your doctor about the best autism treatments and goals for educational services so that you and your child can take advantage of all available resources. Read all you can on autism so you understand the symptoms and behaviors and the differences in medications or alternative therapies. Communicate with other professionals and parents and learn from those who've crossed this bridge before you -- as they share insights into common autism concerns. In addition, become very familiar with public policies so you can be your child's advocate in gaining the best education and care possible. Make sure, for example, that plans (504 or IEP) are in place for your child to receive therapies at school.
2. Get a Strong Social Network
Parenting a child with any chronic illness is emotional; it affects every part of your being. But the day-to-day care of children with autism is especially stressful because of the lack of essential social interaction and communication between the child and adult. Making sure your child gets the help he needs can also pose a challenge, depending on whether quality support services are available in your area. At the same time, you are likely to have ongoing worries about your child's prognosis and long-term well-being. For all these reasons, you need to find strong social support for yourself, as well as for your child.
Gathering your support network involves knowing ahead of time whom you can call for different types of support, even for emergencies, including:
- Emotional: A close friend or family member who is a confidant and whom you trust with your most personal feelings and concerns
- Social: A friend or colleague you enjoy being with and who helps you survive disappointments and shares your victories
- Informational: Your child's doctor, teachers, therapists, or other caregivers you can ask for advice on major decisions regarding his or her treatment
- Practical: A neighbor or close friend who will help you out in a pinch
In addition to these different types of support, you can seek out local groups and parent network organizations for families of children with autism. Ask your doctor or child developmental specialist for referrals. Join online chat groups for parents of children with autism.
The more you know about autism and the stronger your support network, the more empowered you will be to live confidently, knowing that your child can get the help he or she deserves.
3. Teach Your Family About Autism
Many moms of kids with autism talk about feeling isolated. Once a child is diagnosed, moms often find that family members stop asking about the child or the child is left out of birthday parties or other family gatherings.
Spouses and other children in the family may feel stressed, lonely, and even angry, as all attention is focused on the child with autism. While these feelings are natural, you can help your family members cope by educating them about autism and the child's specific needs.
Training family members about autism and how to effectively manage the symptoms has been shown to reduce family stress and improve the functioning of the child with autism. Some families will need more outside assistance than others, depending on their internal functioning, established support systems, and financial situation.
In addition, plan outings with other families who have a child with autism. There are many families who share your concerns and daily challenges. Talking openly with these families can give you new insight and better ways of coping. Local and national groups can help connect families and provide much-needed sources of information. Most health professionals can recommend some of these organizations.
4. Review the Recommended Autism Treatment Options
Child development experts agree that a child with autism should receive treatment as soon after diagnosis as possible. There is no cure for autism, but early intervention using skills training and behavior modification techniques can yield good results. This type of educational and behavioral treatment tackles autism symptoms -- impaired social interaction, communication problems, and repetitive behaviors -- and can boost an autistic child's chances of being able to go to school and participate in normal activities.
The American Academy of Pediatrics (AAP) recommends the following strategies for helping a child with autism improve overall function and reach his or her potential:
- Behavioral training and management. Behavioral training and management uses positive reinforcement, self-help, and social skills training to improve behavior and communication. Many types of treatments have been developed, including Applied Behavioral Analysis (ABA), Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), and sensory integration.
- Specialized therapies. Specialized therapies include speech, occupational, and physical therapy. These therapies are important components of managing autism and should all be included in various aspects of the child's treatment program.
Speech therapy can help a child with autism improve language and social skills to communicate more effectively. Occupational and physical therapy can help improve any deficiencies in coordination, muscle tone, and motor skills. Occupational therapy may also help a child with autism to learn to process information from the senses (sight, sound, hearing, touch, and smell) in more manageable ways. It can also help in performing normal activities of daily living.
Remember, when considering any type of treatment for your child, it is important to know the source of information and to ensure that studies are scientifically sound. Accounts of individual success are not sufficient evidence to support using a treatment. Look for large, controlled studies to validate claims.
5. Learn More About Behavioral Training
Behavioral training teaches people of all ages with autism how to communicate appropriately. This type of training can reduce behavior problems and improve adaptation skills.
Both behavioral training and behavioral management use positive reinforcement to improve behavior. These therapies also use social skills training to improve communication. The specific program should be chosen according to the child's needs. As an example, a high-functioning child with autism may be enrolled in mainstream classrooms and child care facilities. The behaviors of other normally developing children can provide examples for the child with autism to follow. However, other children with autism are overly stimulated in a regular classroom and work best in smaller, highly structured environments.
Consistent use of these behavioral interventions produces the best results for the child with autism. The child's functional abilities, behavior, and daily environment should be thoroughly assessed before behavioral training and management begins. Parents, other family members, teachers, and caregivers of the autistic child should all be trained in these techniques.
An intensive approach using behavior therapy, often called applied behavior analysis (ABA), is uniformly recommended by experts, including a recommendation by the U.S. surgeon general. The prototype program is called classic ABA and involves intensive, one-on-one work for 30 to 40 hours a week. More commonly now, therapists use a “modified" ABA that calls for ten to 12 hours per week of intensive work, allowing for time in school, other therapies, and social interactions with family members and peers.
The goal of behavior therapy programs is to reinforce desirable behaviors and decrease undesirable ones. As an example, the child with autism is taught to perform tasks in a series of simple steps and is given a predictable schedule. The behavioral therapy is then continued at home.
Often, both behavioral therapy and occupational therapy are given at the same time. The downside is that this type of therapy is expensive and often not covered by health insurance plans.
For more information, you can find a review of all the educational programs that work in the book Educating Children With Autism. Written by the National Research Council, the book is available through the National Academies Press at http://www.nap.edu/catalog/10017.html.
6. Assess Your Child's Need for Medication
While there is no medication for autism, there are drugs for specific symptoms that kids with autism might display. For example, short attention spans can sometimes be improved with stimulant drugs that are used to treat ADD or ADHD. Children with autism who have anxiety, depression, or OCD behaviors can often be treated with antidepressants.
Drugs have a limited role in improving symptoms of autism. However, some may help prevent self-injury and other behaviors that are causing difficulty. Medicines may also take a child with autism to a functional level at which they can benefit from other treatments.
The American Academy of Pediatrics suggests targeting the main problem behaviors when considering medicines. Medicines that are sometimes used to treat behaviors related to autism include selective serotonin reuptake inhibitors (antidepressants) and antipsychotic medicines.
Selective serotonin reuptake inhibitors (SSRIs) include Celexa, Prozac, and Zoloft, for example. The high rate of effectiveness for depression, anxiety, and obsessive, stereotypical behaviors has made these medicines a popular choice for managing autism. They may also improve general behavior, language, learning, and socialization. In addition, although SSRIs have side effects such as weight gain or loss, insomnia or drowsiness, and increased agitation, they tend to be less serious than those of antipsychotic medicines.
Antipsychotic medicines, such as Haldol, Risperdal, Zyprexa, and thioridazine work by changing the effects of brain chemicals. They may help decrease problem behaviors that can occur with autism. A well-designed study found that Risperdal was effective for the treatment of tantrums, aggression, and self-harming behavior in children with autism. Both Risperdal and Abilify have been formally approved by the FDA for treating irritability and aggression in children with autism.
However, these medicines can have side effects, including sleepiness, tremors, and weight gain. Their use is usually considered only after behavior management has failed to address the problem behaviors.
Other medicines that are sometimes used for behavioral problems in autism include:
- Catapres and Tenex. These medicines are typically used to lower blood pressure, but are also used to treat impulsive and aggressive behaviors in children with autism. Kapvay and Intuniv, respectively, are longer-acting forms of these older agents, that have been FDA approved for use in hyperactive and impulsive individuals.
- Anticonvulsants, such as lithium, carbamazepine, and valproic acid. Children who are occasionally aggressive may become more stable when using these medicines, although monitoring the level of the drug in the body through regularly scheduled blood tests is required.
The effectiveness of these medicines varies. Side effects are possible and should be discussed with your health professional. Some health professionals may advise going off a medicine temporarily in order to identify whether it is having a positive or negative effect on the child with autism.
7. Learn More About Diet Changes
Diet changes are based on the idea that food allergies cause symptoms of autism, and an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If you decide to try a special diet for a given period of time, be sure you talk to your pediatrician and a registered dietitian. The child's nutritional status must be assessed and carefully measured.
One diet that some parents have found helpful is a gluten-free, casein-free (GFCF) diet. Gluten is a casein-like substance found in wheat, oats, rye, and barley. Casein is the principal protein in dairy products such as milk. There is no scientific evidence to support the use of this diet in individuals with autism, so it's important to ask for guidance from your child's doctor or nutritionist to ensure your child is getting adequate nutritional value from his or her diet.
The theory of the GFCF diet is that in autistic children these proteins result in an overproduction of opiates in the brain, contributing to social awkwardness and thwarting brain maturation. Since gluten and milk are found in many of the foods we eat, following a gluten-free, casein-free diet is extremely difficult.
Parents of a child with autism who also has food allergies or intolerance may be more likely to attempt the restrictive GFCF diet. However, food sensitivities are not proven to be more common in children with autism than in normally developing children. Still, some parents claim benefit from restrictive diets.
One supplement some parents feel is helpful for a child with autism is vitamin B-6, which is taken with a magnesium supplement. The results of research studies are mixed on vitamin B-6 and magnesium supplementation. While some children respond positively, others respond negatively or not at all. You need to be careful with "mega vitamins." It's possible to overdose on magnesium when taking supplements, and that can cause other neurological problems.
8. Use Caution With Unproven Therapies for Autism
The safety and effectiveness of some therapies used to treat autism are not known. Many unproven treatments circulate through websites, word of mouth, or the media. Most have not been subjected to thorough, sound research and are considered nonstandard and controversial. Even if someone else has found tremendous success with an "unproven" therapy, it's important to be cautious about a treatment for autism if:
- The autism treatment is based upon oversimplified scientific theories.
- It benefits more than one condition.
- It provides dramatic and "miraculous" results.
- The only available evidence is based upon a few stories (anecdotal evidence), testimonials, and little or no scientific research.
- Specific treatment goals or target behaviors are not identified.
- Controlled, scientific research is said not to be needed because there are no risks or side effects.
Examples of nonstandard, unproven therapies for autism that are receiving attention include:
- Immune globulin therapy. An intravenous (IV) injection of immune globulin is based on the assumption that autism is caused by an autoimmune abnormality.
- Secretin. This treatment uses an IV injection of secretin (a hormone that stimulates the pancreas and liver) to manage autistic behavior. Anecdotal reports have shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Several clinical trials conducted in the last few years have found no significant improvements in symptoms between children with autism who received secretin and those who received a placebo.
- Chelationtherapy. Mercury exposure as a cause of autism is the basis for this therapy, which uses medications to help the body eliminate the toxins. Children with autism often have a craving for nonfood items or unusual diets that may result in mercury exposure; therefore, mercury exposure may be more of an effect of autism than a cause. Chelation therapy has caused several deaths in the U.S.
- Auditory integration training (AIT). Based upon a theory that autism is caused by hearing problems that result in distorted sounds or oversensitivity to noises, this treatment delivers music through special devices.
- Facilitated communication. This method uses a keyboard to assist communication. It has not been found to be helpful, and in some cases has been harmful.
9. Plan Time for Breaks
Many parents of children with autism feel exhausted, overwhelmed, and sometimes defeated. They talk about difficulties in their marriage and other relationships. While there is no quick fix for resolving detrimental emotions, you can take measures to protect yourself so your child's condition does not get in the way of your physical or emotional health.
Review your calendar weekly. In the midst of the many appointments your child might have with speech or occupational therapists or other health care professionals, write in "appointments" for yourself and your relationships. Schedule regular dates with your partner, other children in the family, and close friends.
Exercise regularly. Keep up with the physical activities you enjoy. Eat a balanced diet and stay at a normal weight. Staying fit and healthy is essential to your physical and emotional wellness -- and to caring for a child with special needs.
Seek help if you or your partner is feeling persistently overwhelmed or depressed, or the stress of caring for child with autism is affecting your family relationship. Watch for signs of anger, resentment, or opposition from other children in the family. Your doctor can help you find a qualified individual, couples, or family therapist to help you figure out the best ways to cope.
In addition, plan time for a break away from a child with autism. Trained personnel can help relieve you from these duties as needed. These breaks can help families communicate in a less stressful context and allow parents to focus on their relationships with their other children. Having regular breaks may also help a family continue to care for a child with autism at home rather than becoming so exhausted that they resort to institutional care. Government programs exist to help families who cannot afford this occasional care.
Moms of kids with autism talk about having very close relationships with their children, as they organize the child's therapy, hire specialists, purchase supplies, and act as their child's advocate to receive the best treatment. The biggest payoff comes from a unique bond you can have with your child and the joy you receive in every developmental accomplishment.
There's no doubt that raising a child with autism is the ultimate parenting challenge. But with the necessary support and ongoing training, you and your family can learn how to cope and work as a team.