YOUR CHILD, LIKE EVERY OTHER CHILD, IS UNIQUE—with a rate of development all his or her own. Some tots walk sooner than other little ones, while other toddlers speak a mile a minute months before their peers say word one. And because there’s a very wide range of normal when it comes to just about every developmental achievement, toddlers typically fall all over that right-on-schedule spectrum. But sometimes, a toddler’s not right on schedule, at least not consistently, and instead shows signs of a true developmental delay that calls for therapy or other interventions. Developmental disorders, which can vary greatly in severity, include autism, intellectual disabilities, sensory processing disorders, congenital disorders and syndromes, or other developmental delays. If you have a hunch your child isn’t developing normally, don’t keep it to yourself—share your concerns with the doctor. Remember, you know your child best, and can pick up on nuances in behavior that others might miss. And don’t wait, either. An early diagnosis and early intervention (or early reassurance that all is well after all) can make a tremendous difference.
What is it? Autism Spectrum Disorders (ASD) are a group of conditions that affect a child’s behavioral, social, and communication skills. Affected children have difficulty with social interactions, trouble with verbal and nonverbal communication, and exhibit repetitive behaviors or narrow, obsessive interests. Symptoms within the autistic spectrum can range from mild to severe.
It’s estimated that 1 in every 110 children will be diagnosed with autism or another disorder in the spectrum (such as Asperger’s syndrome or Pervasive Developmental Disorder; PDD). The numbers seem to be rising significantly, but some experts say that the statistics don’t tell the whole story. They suggest that the increased rate may largely be due to more kids being diagnosed (thanks to heightened awareness of the disorder, its symptoms, and treatments) and to the fact that a wider range of developmental disorders is now being labeled part of the autism spectrum.
It is unclear what causes autism, though studies have shown that genetics play an important role in the disorder. It is also unclear whether it is one disorder, several disorders, or many disorders with similar manifestations. Boys are four times more likely than girls to be affected, and if one sibling has ASD, the other siblings have about a 20 percent risk of developing it. Some researchers also suspect chromosomal abnormalities may contribute to autism. Other studies point to abnormal brain growth in autistic kids, and there is some evidence that environmental factors may play a role as well. One thing that is known for sure—and has been proven by large-scale studies again and again—there is absolutely no evidence of any relationship between autism and receiving childhood vaccines.
While the causes of autism remain mysterious, the signs don’t necessarily come out of nowhere. Most parents of autistic children are recognizing language delays and other symptoms by about 18 months of age, but there are red flags that parents can look out for much earlier than that. According to the AAP, some early, more subtle signs of ASD may be noticeable as early as 12 months. They include:
Child doesn’t turn when you say his or her name.
Child doesn’t turn to look when you point and say “Look at ...” or doesn’t point to show you an interesting object or event.
Lack of back-and-forth communication with parent.
Delay in smiling.
Failure to make eye contact with people.
Other signs of possible ASD that warrant evaluation by the pediatrician include:
No babbling, or pointing or other gestures, by 12 months.
No single words by 16 months.
No two-word spontaneous phrases by 24 months.
Loss of language or social skills at any time during toddler/preschool years.
There is a wide range of symptoms among children with ASD and no two children will have exactly the same symptoms. Children may have all or only some of the typical ASD symptoms and at varying degrees of severity. Those symptoms can include:
Communication symptoms
Delays in language: Doesn’t say single words by 15 to 16 months or two-word phrases by 24 months.
Poorly developed language skills and a lack of desire to communicate with others.
Repetition of words without attaching any meaning to those words.
Doesn’t respond to name being called but will respond to other sounds (such as the wail of an ambulance or a dog’s bark).
Social symptoms
Greater-than-typical difficulties with social interactions, sometimes even with parents (doesn’t respond to verbal or physical cues from others and may be socially withdrawn).
Inability to interpret nonverbal communication (such as an angry voice or a big smile).
Trouble making eye contact with others (but may gaze into space for hours on end).
Doesn’t point to objects.
Doesn’t have appropriate facial expressions.
Shows no empathy.
Never snuggles when picked up (instead arches his or her back the majority of the time).
Behavioral symptoms
Ritualized behavior beyond what’s typical for a toddler.
Fascination with parts of objects, such as a tag on a shirt.
Plays with toys in unusual ways; doesn’t use toys for pretend play.
Tends to engage very little in imitative play and shows little imagination.
Inappropriate behavior (for example, smells everything encountered).
Head banging and self-biting to the point of injury (as opposed to the kind of harmless head banging that many toddlers use to unwind before sleep or when stressed).
Endless screaming and other kinds of frenzied behavior, such as frequent and intense tantrums (well beyond what’s typical for a toddler).
Dislikes loud noises, but is mesmerized by many visual stimuli (a moving fan, for example).
Obsessively repeats activities.
Rocks, sways, and spins body, twirls fingers, or flaps hands.
May have some gifted skills (like early reading or excellent math skills), but often without understanding their meaning.
Extra sensitivity or lack of sensitivity to stimuli such as smells, sounds, touch, lights.
If you’ve noticed these types of symptoms in your toddler—or if your child has exhibited early warning signs—talk to your pediatrician. He or she can use a standardized screening test to see if your toddler might be affected by ASD and need an evaluation by a developmental specialist.
Management. There is no known cure for autism spectrum disorders, but early intervention—with therapy to help foster normal development (as much as possible) and promote language development, social interaction, and learning—can make a remarkable difference in a child’s future. There are a variety of treatment approaches that may modify the condition; some are scientifically based, and others are alternative therapies. What works for one child many not work for another, so therapy should be individualized.
Among the treatments that have shown some success are:
Applied Behavior Analysis (ABA, which uses positive reinforcement and other principles to build communication).
Floor Time (a formal program in which parents participate in the child’s play).
TEACCH (a program that focuses on communication and social interactions).
Sensory integration (to help desensitize children to things that bother them).
Behavior modification (with rewards for appropriate behavior, denial of rewards for inappropriate).
Medication to treat specific symptoms (usually reserved for older children).
Motivation (finding an area of interest to the child, such as music or art or science, and trying to connect socially and physically through it).
Alternative treatments have not been studied enough to prove whether they are safe and effective. For instance, some parents say a gluten-/casein-free diet (GFCF) works, but so far, studies haven’t backed up those anecdotal claims. That said, most doctors agree that if parents are willing to try a GFCF diet, there’s probably no harm and possibly some benefit. Other dietary alternative therapies (omega-3 fatty acids; vitamin supplements; probiotics; cutting out food additives, like artificial colors) also have not been proven yet to be successful in treating ASD, though some of those may come with other health benefits. Some so-called treatments are downright dangerous (large doses of vitamins, for instance, or chelation therapy or colonics). Sorting out nontraditional therapies touted on websites and message boards may be particularly difficult for parents, especially when you’re willing to try anything. For that reason, make sure that any treatment you decide to try has been green-lighted (and is supervised) by your child’s pediatrician or developmental specialist.
Prognosis. How much autism will affect a child’s life and future success is difficult to predict during the toddler period, and it varies with the degree of autism and the seriousness of related conditions. But with extensive, intensive intervention by both parents and professionals (25-plus hours a week year round), and with a multifaceted approach (possibly including medical treatment, psychological counseling, speech therapy, physical therapy, and special education), many children improve their communication and social skills significantly. Though some people with autism require lifelong protective care, others make remarkable progress and are able to be mainstreamed in school, go on to college, and hold jobs later in life. Improved treatment may continue to better the outlook for today’s autistic children.
Keep in mind: The earlier your child is able to begin treatment and interventions, the better the prognosis, so early diagnosis is crucial. If you suspect there is something wrong with your child, talk to your doctor right away. The AAP recommends autism-specific screening at ages 18 and 24 months. This will usually happen at routine checkups, but if your pediatrician hasn’t performed the screening or you’re not sure, ask about it.
For more information, contact the Autism Society of America (autism-society.org) or Autism Speaks (autismspeaks.org).
What is it? Sensory Processing Disorder refers to a group of signs and symptoms stemming from a child’s difficulty integrating information that comes in through the senses—hearing, seeing, smelling, tasting, and touching. It is slowly gaining acceptance as a diagnosis among medical professionals. Children with SPD often exhibit an over- or undersensitivity to stimuli—they receive signals from their senses, but aren’t able to organize and interpret those signals and respond appropriately. Some toddlers with SPD may not enjoy being touched, while others like to touch everything. Some kids have trouble with balance, while others like to spin around all the time, and others have problems with coordination. Some children can’t handle loud sounds and are overstimulated by certain sights. Some find wearing clothes, especially those made with rough, scratchy, or itchy fabrics, unbearable. Many children with SPD have pronounced food aversions.
Most symptoms of SPD sound like variations of “normal” toddler behaviors, but in children with SPD, the signs and symptoms are chronic and severe enough to interfere with daily functioning. Some experts believe that 1 in 20 children are affected by SPD. In many cases—but far from all—SPD symptoms are part of a larger picture of Autistic Spectrum Disorders. It is thought that SPD has a genetic component to it and possibly an environmental cause as well (as with autism)—but the research on the condition is still in its early stages.
Many completely normal toddlers seem to be sense sensitive at least some of the time (they get unduly upset about bunched-up socks, turn their noses up at anything that isn’t bland-tasting, become easily overstimulated at a birthday party). But if you suspect that your toddler’s over- or undersensitivity to any of the senses is extreme—especially if it disrupts normal functioning—bring up your concerns with your child’s doctor.
Management. Usually a mixture of occupational, physical, and speech/language therapy that involves activities and games in a sensory-rich environment, guided by a knowledgeable therapist, with the goal of teaching children how to respond appropriately to external stimuli and become more comfortable when they encounter sensations that disturb them or become more alert to sensations they usually don’t notice. These types of therapies have been shown to make a difference for some children with SPD, though the clinical evidence is still sparse.
For hypersensitive children (those who overreact to stimuli), treatment might include a slow and gradual introduction to various sensory stimuli, such as keeping the lighting low, touching the child gently, rocking the child—and other activities designed to help the child better handle stimuli that upsets them. For hyposensitive children (those who underreact to stimuli), the approach is reversed. Treatment can involve teaching the child how to be aware of his or her body and body parts and how sensory stimuli affect the body (the child might be asked to wear a weighted vest, for instance, or to lift, push, pull until he or she becomes more alert to the feel of his or her body).
Prognosis. Children with SPD usually grow into adults with SPD, but therapy (early and as needed throughout life or when encountering new situations—like college, for example) can help them learn how to handle the senses more appropriately. Counseling that increases self-awareness and understanding can also allow these children to grow up knowing which strategies can help them cope in new situations.
For more information on SPD, check out the Sensory Processing Disorder Foundation (spdfoundation.net).
What are they? As much as they try not to, most parents will compare the development of their child to that of other children in playgroup or day care. And most of the time, even children who seem somewhat behind the curve when it comes to gross or fine motor skills end up catching up eventually. But occasionally, a child truly falls behind—and that’s when a developmental delay is diagnosed.
There are a number of different types of developmental disorders that can affect toddlers in the second year, including (but not limited to):
Fine motor disorders. Children with poor fine motor control may have difficulty holding a spoon or fork. Or they may be unable to grasp a crayon correctly and use it to draw by age 2. Later on, these children will have difficulty writing.
Gross motor disorders. Some toddlers are consistently behind other children in every gross motor skill. They may have difficulty controlling their large muscles—making it hard to stay balanced and coordinated.
Oral motor disorders. Some toddlers have trouble controlling the muscles in their mouths—making eating difficult (they’ll refuse to eat foods unless they’re pureed) and sometimes contributing to excessive drooling beyond the age of 18 months. The biggest risks faced by children with an oral motor disorder are trouble gaining weight (if they don’t eat, they won’t grow well) and, eventually, difficulty articulating language.
Language delays. Though screeened for at regular checkups, language delays aren’t usually apparent until after the second birthday.
The pediatrician will screen for developmental delays at each visit, but if you sense that something is wrong, don’t hesitate to bring it up. Often, parental instinct trumps medical awareness. The earlier therapy is started, the better for your child.
Management. If you or the doctor notice some motor delays in your toddler, neurological exams that look at your child’s muscle tone, strength, reflexes, and coordination will be conducted. The pediatrician will also likely conduct a developmental assessment. If a developmental delay is considered likely, you’ll be referred to an early childhood intervention program so that a treatment plan can be developed. Often, such a plan will consist of occupational, physical, and speech/language therapy (if a language delay is noticed). If necessary, your child might require further evaluation by a pediatric neurologist, a speech and language specialist, and/or a developmental pediatrician.
Prognosis. Treatment begun early (or as soon as a disorder is diagnosed) can be very effective. For more information on developmental delays, see the National Dissemination Center for Children with Disabilities (nichcy.org).
Since every child is different, even children who share the same physical or emotional challenge are never exactly alike. But though no two special-needs children are the same, some basic needs are common to all of them—and to their families:
Unconditional love. Even a child who doesn’t seem to respond to displays of love and affection needs them and benefits from them. So heap on the hugs and kisses. Squeeze that little hand gently. Make the kind of eye contact that shows you care even when it isn’t reciprocated.
Normalcy. This is a tall but important order for a family with a special-needs child. Strive for a normal family life in as many ways as possible and make every effort to treat your special-needs child as you would any child. Nurture his or her self-esteem, encourage without pushing, and don’t withhold discipline. Set limits according to your child’s abilities, but be sure there are limits. Being overindulgent, overpermissive, or overprotective with a child with special needs won’t help—and may actually slow—his or her development.
Remember that, like all toddlers, a special-needs child is likely to want to “do it myself.” Instead of always jumping in and taking over, give your child the chance to try to handle things independently whenever possible. When doing it “myself” leads to mistakes (it inevitably will—even for young children with no disabilities), encourage your toddler to learn from the mistakes and try to do better the next time. And no matter what the final result, be sure to reinforce the effort.
Most special-needs toddlers are also prone to other typical toddler behaviors—including tantrums, negativity, self-centeredness, and separation anxiety. Try to respond to these behaviors just as you would with any toddler, but with the extra sensitivity your toddler needs (check the index for individual behaviors and tips on coping with them).
And as much as is possible, don’t let your child’s condition prevent him or her (or you) from living as normal a life as possible, in as many ways as possible—playing with toys, going out, making friends, meeting new people.
Clarification. Explain your child’s situation to siblings, grandparents, other family members, and close friends. The more they understand, the more supportive they can be.
Appreciation. Every child, even the most severely challenged, needs to feel appreciated—so let your child know that he or she is. Look beyond special needs for qualities and character traits that make your child special—a beautiful smile or endearing dimples, a kind heart, a way with animals, an indomitable spirit. This appreciation can improve your outlook as well as your child’s, and it can give your family the strength it will need to overcome any obstacles that lie ahead.
You, too, will benefit from a little appreciation. Since you’re unlikely to get all you need from your child (toddlers aren’t usually big on acknowledging their parents’ efforts), look to your spouse, other close relatives and friends, or a support group or message board to build you up when you’re feeling underappreciated.
Relief. To be effective nurturers and caregivers, all parents need a break once in a while. But because the demands on parents of children with special needs can be so overwhelming, your need for relief is even greater. Assuming you can find someone to care for your little one, try your best to build some “me” time into your week—go to a movie, relax in the tub, see friends, hit the gym. And never feel guilty about taking time off. You’ll return refreshed, more relaxed, and better able to help your child.
Fun. A sense of humor—and an appreciation for simple pleasures—always makes family life happier and less stressful, but it’s especially helpful when a family member has special needs. Taking a lighter approach to life can make your child’s special needs seem easier to deal with and can help you think more positively (which can be contagious). When the going gets tough, try a little laughter, a little silliness, a little playfulness to get you going again.
Early intervention. Virtually every condition can be improved with early intervention. Try to make sure your child gets the best available professional diagnosis and treatment as early as possible. For even greater benefit, get the training you need so you can extend that intervention to the time your child spends at home.
Parent support groups. Thousands of groups are active around the country and online. Caring for a special-needs child can be physically demanding and emotionally draining—and connecting with parents who share your concerns (in person or online) can be very therapeutic. It can allow you to vent your feelings of frustration, anger, and resentment in a healthy way and to an empathetic audience, rather than bottling them up or taking them out on your child, on yourself, or on the rest of the family. The swapping of various experiences, insights, and coping strategies can also be invaluable.
Relationship support. While just-the-two-of-you time between spouses is always hard to find when there’s a young child in the house, it’s harder still when the young child has special needs. Yet having a special-needs child doesn’t automatically put a relationship at risk—in fact, it’s just as likely to strengthen it. Give your twosome every chance of success by supporting each other emotionally, sharing responsibilities (no one parent should have to go it alone), setting aside time to spend as a couple (very difficult, but very important), and keeping the lines of communication open so that you can share your feelings—both positive and negative.
Sibling support. Siblings can have a hard time when so much attention is necessarily paid to the special-needs child. See the box above for tips on helping siblings cope.
Coping strategies. With help from professionals, support groups (local or online), or others who’ve already tackled the same issues, learn how to cope with your child’s special needs, how to meet your needs and the needs of other family members, how to organize your time, and how to forgive yourself for not being perfect (remember, no parent is—and you’re up against more than the average parent is).
A thick skin. There will be those who don’t get what you and your little one are up against, and they’re bound to say things that get you down. Try to let those comments bounce off you (after all, you can’t educate everybody)—even if it just means giving the old smile-and-nod. But also, try to be as open and matter-of-fact about your child’s condition as you can (or feel comfortable being), especially with family and friends, so that you don’t give anyone, including your child, the impression that you’re embarrassed or upset by it. Proudly point out the special traits of your special-needs child, as well.
Acceptance. Many disabilities and chronic conditions can be controlled or even greatly improved, but most aren’t completely curable. So while you should never stop trying to bring out the very best in your little one, it’s also important to accept the realities of the condition and the limitations it comes with. To reach that acceptance, you’ll probably have to struggle with some other challenging feelings, including anger, grief, and guilt. You may also, at first, find yourself focusing too hard on your child’s weaknesses and too little on his or her strengths, and that’s only natural. But the more accepting you are of your child, the more self-accepting he or she will grow up to be. Try to focus any frustration or anger you understandably have on the disorder, where it belongs—not on your little one or other family members.
Encouragement. Accepting your child’s limitations doesn’t mean that you shouldn’t make every effort to help your child reach his or her greatest potential. Encourage and nurture intellectual and physical growth and the development of skills of all kinds (including social skills).
Hope. Acceptance also doesn’t mean that you’ve given up hope. For the vast majority of special-needs children, love, support, a positive attitude, and appropriate therapy can improve the prognosis, sometimes dramatically. For many, new research on the horizon may even bring the cure you hope for. Some research suggests that hope itself may also influence a child’s (or anyone’s) success in life—so keep hoping.