Parenting Solutions: Autism Spectrum Disorder

The Change to Parent For

Your child learns habits that will help him flourish to the best of his ability in whatever arena he faces. You discover your child's specific emotional, behavioral, and learning needs and find the most appropriate settings to match them.

Question: "My child is just 'different' and noticeably stands out from the rest of the kids. He's never in sync with those darn developmental milestone charts—either way behind or ahead. All he talks and thinks about is meteorology and turns other kids off because he's so obsessive, and he has no friends. His teacher said that he might have Asperger's. Should I get him diagnosed?"

Answer: Although we should celebrate and accept our child's differences, there is a point when parents should seek help. I tell parents to consider these four factors when trying to figure out if their child's quirkiness is normal or too far out and should be checked:

1. Family factor: Is your home life compromised? Is everyone walking on eggshells?
2. Struggle factor: Is the quirkiness getting in the way of his happiness and ability to function in life? Does your child continue to suffer despite your best parenting efforts?
3. Instinct factor: Do you feel deep down that something is just not right? Does your child stand out as obviously different and less developed than other kids his age?
4. Duration factor: Has the problem persisted or even increased over time?

If you answered yes to one or more of these questions, then it's time to take this more seriously. The place to begin is by talking to your child's teacher, the school psychologist, and your family doctor to see if they concur with your concerns and think it's time to have your child evaluated.'

Pay Attention to This!

Should Your Child Be in a Special Education Setting?

Most parents with a child on the autism spectrum wrestle with the question of whether or not their child should be in a special classroom setting, be it a gifted program, a special education classroom or program, or a private school specializing in the child's unique interest or needs. Always visit the school and talk to the teacher and administrator, then use these questions to help guide your decision:

• Would my child find friends or fit in with these students?
• Is the class or school a good match for my child's strengths? Does the program accommodate my child's needs?
• Is the staff specially trained to deal with my child's behavior and unique needs? Are they knowledgeable and using the latest proven educational strategies for dealing with ASD?
• Is the program affordable and worth the cost?
• Will there be an individualized plan specific to my child's diagnosis?
• Can I visualize my child in this setting? Would he be happier or more secure in this environment?
• Is my child happy and thriving as best he can in his current placement? Could this new program satisfy his needs significantly more than the other placement? Is it worth the change for my child and my family?

Why Change?

Of course all kids are different, and thank heavens they are! But the sad truth is that some children are marginalized because other kids consider them "too different." Their unconventional or nonconformist behavior, physical and mental characteristics, and appearance do stand out and not always in positive ways. As a result they often experience debilitating rejection and may experience chronic anxiety, depression, low self-esteem, and acute loneliness. Those with Autism Spectrum Disorder are unfortunately pegged as "most different," so they suffer most.

According to the Centers for Disease Control and Prevention, about 1 in 150 kids is now diagnosed with the disorder. That's a tenfold jump in just the past decade, and in fact Autism Spectrum Disorder is considered by mental health professionals as the fastest growing developmental disability in the United States.¹⁶ But that does not mean that each of those 1 in 150 children is autistic. There are varying degrees of autism, from very mild and high functioning (usually called Asperger's syndrome or Asperger's Disorder) to severely debilitating and low functioning (or autistic). The most commonly held view among mental health professionals these days is that a child with symptoms anywhere on that range—from mild to severe—should be given a diagnosis of Autism Spectrum Disorder (ASD).

At this point there is no accepted cause, no cure, nor any single agreed-on treatment for ASD, though there certainly are dozens of theories. But let me be very clear: Asperger's syndrome and Autism are neurological conditions—not psychological or behavioral issues—and neither of them is caused by "bad parenting." I emphasize that because two decades ago when I taught autistic kids, the general belief was that a "Refrigerator Mother" brought on the condition. I'm still haunted at the injustice done to those women who were some of the most loving moms I've known—so guilt-ridden believing that horrific notion. You did not bring this on your child, so let's move on to what you can do to help him, and the starting place is acceptance.

Make no mistake: the world needs quirky adults who can think and act "outside the box" (think Sir Isaac Newton, Einstein, van Gogh, Hans Christian Anderson, Mozart, Bill Gates). But in the here and now, we need to help our children function and succeed more in life. There is one thing that experts do agree on: early intervention does make a difference. If you suspect or know that your child lies somewhere on the autism spectrum, this entry describes solutions to help you parent your child's more "eccentric ways" and offer him the best chance for success in life.

Signs and Symptoms

A number of the following symptoms must be prevalent and enduring from a young age for a child to receive a diagnosis of ASD. (Please note: only a trained professional is able to provide an accurate diagnosis.)¹⁷ Where your child fits on the spectrum determines his diagnosis as well as treatment. Here are several signs:

• Extreme temperament: unbelievably irritable or needy; chronically frustrated or disturbingly placid
• Social interaction difficulties: fails to develop friendships or share enjoyments or achievements with others, lacks social skills; socially awkward; prefers to plays alone; doesn't engage in spontaneous make-believe play or social imitative play appropriate to developmental level
• Nonverbal behavior difficulties: avoids eye contact; has difficulties interpreting facial expression, posture, and gesture
• Lack of emotional intelligence: has difficulty reading emotions and processing or identifying others' social cues; unaware of others' feelings; understands things very literally, without nuance or ambiguity
• Lack of ability to show empathy: unable to see another's perspective; sees things only from his own view
• Social speech and language variations: has unusual speech patterns, difficulty initiating or sustaining a conversation; speaks constantly but can't get a point across; talks only about an obsession or not at all
• Extreme need for routine: must adhere to rigid routine; transitions or disruptions throw him
• Repetitive and inappropriate behaviors: consistently rocks or flaps his hands, has "nuclear" tantrums, generally has no idea he is acting inappropriately
• Obsession with interests: has intense, obsessive interests (all he talks about is astronomy, all she does is play chess)
• Poor motor skills: has poor coordination, odd gait when walking or running; physically clumsy
• Sensory sensitivity: overly sensitive to sounds, lights, fabrics, textures, or smells

The Solution

Step 1. Early Intervention

• Accept your child's difference. There's no doubt about it: having a child who has extreme needs and is marginalized is one of the tougher parts of parenting. But in order for your child to come to terms with his differences, you must accept your child for who he is. He needs your unconditional love and support. Anticipate problems. Identify your child's quirks so that you can find ways to prevent potential problems. For instance, if he has to have lunch at a certain time, feed him before he goes to the park. Talk to the parent about his fear of balloons popping before he goes to the party. If the smell of paste sends him into a tizzy, ask the teacher if he can use a glue stick before he does the project. Figure out how long your child can handle a situation before he melts down so that you pick him up a half hour earlier and help him save face.
• Form a partnership with the school. Become allies with educators at your child's school. Ask for their perspective on how your child is handling the school scene. Talk to the teacher, school psychologist, principal, or counselor and find out what kind of educational and psychological support can be offered. The school may be able to supply additional resources, a dedicated teacher's aide in the classroom, a club tailored to his interests, a quiet place to go when things get tough, names of students with similar interests your child might associate with. Take advantage of the resources available that might serve your child better.
• Be your child's advocate. Your kid's quirkiness may raise eyebrows, and you probably will hear negative comments, so you may need to develop thicker skin. Have one great response ready to say when the moment arises: "Thank heavens he's not like the rest of the world," or "We're raising the next Mozart [Einstein, Robin Williams]." Utter it with confidence and then walk on. Your role is to be your child's best advocate and supporter.
• Empathize and show support. Some quirky kids are oblivious to their differences and other kids' negative reactions. But if your child is aware of the stares or rejections, acknowledge that the difference will be tough and may continue to be so. "I know it's really tough to be in a special class." "You're right, it's hard to stop flapping your hands when you're excited." "I know they call you 'retard.' They don't realize how smart you are." It may help to identify one empathic child in each social setting to look out for your child.
• Find supportive caregivers. Your child will need cheerleaders, so connect with those who are directly responsible for your child's care and education. Explain your child's "quirkiness" so that they know this is not intentional or attention getting behavior. Let them know any special behavior strategies or needs your child has that will help him cope. Get to know the other parents, volunteer to help out in class, join the PTA, or become a scout leader. Any way you can engage in the school and community can help your child make friends and fit in.

Step 2. Rapid Response

• Decide whether to evaluate. Although there is absolutely nothing wrong with being eccentric, you must weigh whether your child needs special medical, educational, or psychological attention. If he does, that would require an evaluation by a trained mental health professional. Use these as your core questions to guide you as to whether to evaluate and label your child's difficulties:

Would the label help you know whether there is a medical or neurological cause? Many things can cause a child's quirkiness, including ASD. But a child on the autism spectrum often has additional conditions, such as a sensory disorder, attention deficit (ADD or ADHD), depression, Obsessive Compulsive Disorder (OCD), a learning disorder, and giftedness. Without a thorough evaluation, you won't know if your child lies on the autism spectrum or if there are other preexisting conditions.

Would the label help your child secure better treatment? There is no one-size- fits-all treatment for a child with ASD (or any other condition). Each treatment must be based on the right diagnosis (and label). Also, your child won't be able to receive specific treatment or available educational and psychological resources (which can save you hundreds of dollars) without the label.

Would the label help your child function better in life? How happy has your child been in most aspects of his life over the past weeks? Rate your child's overall "happiness quotient" on a scale of 1 to 10 (10 is the highest; 1 the lowest). If he's generally happy and in the 6–10 range (every kid has his good and bad days), then you might hold off. If your child is in the 1–5 range, then it's time to look into this further. An evaluation may help your child get along better in life because of specialized remediation. Hint: a child's failure to develop friendships—which can greatly derail the happiness factor—is usually the top reason why parents decide to have their child evaluated.¹⁸

If you answer yes to even one of these questions, then go for the evaluation. Seek only a credentialed psychologist or psychiatrist who is recommended by sources you trust. You don't have to publicize the results or let others know about your child's specific label, which can be stigmatizing.

• Get the best treatment. Once you have evaluated your child, do your research and seek out the best treatment for your child based on his unique issues. A heads-up: professional advice varies greatly depending on the person's training. A pediatric neurologist's opinion will differ from that of an occupational therapist or special education teacher, which means you may end up receiving conflicting advice. Make sure to seek advice only from professionals who are knowledgeable and trained in ASD. Ask for recommendations from your school psychologist, counselor, teacher, and doctor. Call the nearest medical center or university child development center or conduct a thorough Web search. Beware: dozens of treatments (many quite pricey) for ASD profess miraculous "cures." Check the research behind any treatment before signing on the dotted line. Contact the American Medical Association (www.ama-assn. org/), the American Academy of Pediatrics (www.aap.org/), or the American Psychological Association (www.apa.org/) if you are in doubt.
• Get educated. Every parent improves her parenting through education, but especially so if your child is diagnosed with ASD. The more you know about your child's condition, the better you can parent. Start by reading a few of the books in the More Helpful Advice box so that you can begin realigning your parenting to an ASD child.
• Tailor your response to your ASD child. The fact is that most parenting strategies won't work with ASD kids because their brains are wired differently, so they will respond differently. Here are a few key parenting solutions for ASD kids (pass them on to other caregivers):
  • Keep emotions in check. The best way to respond is to be calm, logical, and direct. ASD kids are usually very sensitive and can't manage emotion overload. Stay calm.
  • Don't force eye contact. Your child will have a difficult time using eye contact. Just because he isn't looking at you doesn't mean he isn't listening. In fact, forcing him to look at you often makes it more difficult for him to concentrate.
  • Give step-by-step directions. ASD kids are rule followers and need to know what is expected. So give clear, simple directions and rules. Speak more slowly, repeat the directions if needed, and give picture cues or hand signals if they help.
  • Speak literally. ASD kids often don't read between the lines or have a sense of humor, irony, or ambiguity. They are very concrete.
  • Be patient. Your child may take longer to process what you say. So give him time to think. If you interrupt in the middle of his thought, he may have to start all over again.
  • Keep to routines. Predictability helps, so stick to a set routine so that he knows what to expect and has a structure he can count on. Also give as much notice as possible if there is a change in the schedule. (A few quiet warnings can help.)
  • Curb stress. Researchers at the University of California at San Diego found that too much stress causes temporary memory loss, so ASD kids actually get into a brain-lock mode and can't apply skills or remember information.¹⁹ So reduce stress. Cut back on the loud noises, lights, and chaos, which overstimulate your child. Limit the number of pals and the playdate time. Help him find a quiet place to go when he feels overwhelmed. Go with your child's flow and keep things calm.
  • Chunk the steps. ASD kids need to have things broken down into small, understandable steps, whether they're learning to shake hands or say goodbye. Visual cues often help, so draw each step and then practice the skill until your child feels comfortable.
  • Prepare for events. You can help reduce the stress in a social situation by preparing your child for what might happen at a social event. Let him know how many people will be there, the event theme, how long it lasts, and other details that might help him feel secure.
• Join a support group. If you are struggling (which is very common) with your child's diagnosis, then consider finding a parent support group in your area or online, or getting counseling to help you find the inner strength you will need to help you help your child. GRASP is the world's largest support organization for Asperger's and has a list of families to connect with on its Web site (www.grasp.org).

Step 3. Develop Habits for Change

Teach new habits to your ASD child. As I said, normal parenting strategies usually don't work for an ASD child, so you may have to be creative. Think outside the box! For instance:

Problem: Your child is flapping and waving his hands. Solution: Try putting a small wrist weight on his hands to help him keep them down, or put a small toy in each pocket and encourage him to play with the toys and stop the waving.

Problem: Your child perseverates on the same topic. Solution: Try giving him a small box with a lid to "lock away his thoughts." Just show him the box "trick" once and then tell him to remember the box whenever he can't let go of a thought.

Problem: Your child can't stop moving his legs. Solution: Wrap a bungee cord around the legs of chair a few inches off the ground to rest his feet on. The "vibration feel" is often helpful.

When you do find a strategy, pass it on to your child's other caregivers.

• Teach ways to handle a social faux pas. Getting along with others is often the biggest problem for ASD children. They simply can't read social cues or feel or see emotions the way others do, so they often unintentionally hurt many a person's feelings. So teach your child a few lines to help him say he is sorry. It will take time for him to understand why he should apologize, because he really doesn't realize he did something wrong. But he needs the skill to help him repair relationships. Teach just one line at a time until he can deliver it. Here are a few: "I'm sorry." "I shouldn't have said that." "I didn't mean to hurt your feelings." "Can I do something to make you feel better?"
• Help your child fit in. The fact is, kids accept or reject you not only because of who you are but also because of how you look. First impressions and how a child looks are not too hard to fix. No matter how different your child is, he can be well groomed, have good hygiene, and dress in a style that fits in with the rest of the kids. Also, are there things your child does that turn kids off? A few basic skills that all kids need and are teachable include taking turns, saying "Excuse me," losing gracefully, and using conversation openers. Richard Lavoie's book It's So Much Work to Be Your Friend offers great helpful advice. Just focus on small things you can change so that you can help your child fit in just a bit more.
• Cultivate a talent. Children on the autism spectrum generally have a welldeveloped "splinter skill," such as medieval history, orchids, computers, astronomy, an ant colony, or playing the oboe. Find a way to let your child demonstrate that talent as a way for him to gain appropriate attention and even make a friend.
• Find a mentor or positive role model. Consider seeking a possible adult mentor who is empathic and supports your child's interest, whether it is an artist, chess player, cabinetmaker, anthropologist, history buff, or computer expert. It's often helpful for kids to recognize there are many people out there just like them who are happy and hugely successful, and ASD kids often prefer the company of older kids or adults.
• Find kids with similar interests. The sad truth is that quirky kids are often rejected, but with a little ingenuity you might be able to help your child find a pal. Ask his teacher for possible suggestions. You can help facilitate a relationship by making your home kid friendly or seeking out places that support your child's natural talents (such as the museum if he's into oil paintings or 4-H if he loves horses). Other kids with similar passions may hang out.

What To Expect By Stages And Ages

Preschooler   Ten percent of kids diagnosed with ASD are identified at age four.²⁰ Symptoms of ASD first surface because the child's play rituals are noticeably different from those of peers. They often prefer to play by themselves while others play nearby; they are unwilling to acknowledge other kids or join in a group game, and often interact better with adults than with peers. They need adult guidance to initiate and guide relationships. They often collect certain toys or objects but prefer to line them up, count them, or move or organize them in a specific formation instead of playing with them. They may display odd behaviors, such as silliness, excessive loudness, or use of repetitive physical movements, or they may be overly aggressive.

School Age   Social problems become more apparent. At this age, a kid with ASD prefers to isolate himself from social interactions. The child can be excessively bothersome, immature, loud, or meddlesome, causing peers to avoid or reject him. Mid-elementary is when the child may recognize that he doesn't fit in, though he doesn't understand why. Kids with ASD usually display an advanced intellect and reading and vocabulary skills. Fifty percent of kids with Asperger's are diagnosed between five and ten years of age.²¹

Tween   Friendships and cliques are primary factors, so the social scene can be a jungle for ASD kids lacking the social skills to fit in. Look out for peer teasing, bullying, and rejection. (See Bullied, p. 323; Rejected, p. 381; Teased, p. 415.) Self-esteem can take a nosedive, and depression can become an issue. (See Depressed, p. 488.) Twenty percent of kids with Asperger's are diagnosed between ten and twelve years of age.²³

One Parent's Answer

A dad from Northridge shares:

My son was diagnosed with Asperger's, but is also gifted. He's always latched on to such obscure interests that he has nothing in common with peers and usually turns the other kids off. He needed some kind of social outlet, so I started looking into what was available in our community by checking the public library, doing a Google search, and leafing through the yellow pages and discovered not only a crossword puzzle club but also a few kids from around the valley who share his passion for ancient history. He finally found a friend and is so much happier.

Late-Breaking News

Fraser Institute, Minnesota: Kim Klein, a pediatric neuropsychologist, and her colleague Pat Pulice headed a study to learn the long-term impact of Asperger's.²² Although a small number of participants were involved, preliminary results should comfort parents. Here is a sample of how peers without the disorder compared to young adults with Asperger's. The study found that young adults with Asperger's syndrome are

• Equally likely to graduate from high school
• Equally employed, though with fewer hours and more frequent job changes
• Much less likely to have problems with alcohol or drug abuse
• Much less likely to be associated with legal problems

Some areas of difficulty were found as well: 69 percent of young adults with Asperger's needed medication for depression (compared to 39 percent of those study participants without the syndrome). Young adults with Asperger's also required more family support to be successful, were less likely to be in a relationship or married, were more likely to live with their parents, and showed an increased risk for coping problems or poor judgment.

More Helpful Advice

A Parent's Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive, by Sally Ozonoff, Geraldine Dawson, and James McPartland

The Asperger's Answer Book: The Top 300 Questions Parents Ask, by Susan AshleyAsperger's Syndrome: A Guide for Parents and Professionals, by Tony Attwood

It's So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success, by Richard Lavoie

Nobody Likes Me, Everybody Hates Me: The Top 25 Friendship Problems and How to Solve Them, by Michele Borba

Parenting a Child with Asperger's Syndrome: 200 Tips and Strategies, by Brenda Boyd

Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit In—When to Worry and When Not to Worry, by Perri Klass and Eileen Costello