Narrow the gap between knowledge and behavior

There is much currently being published in medical literature about the gap between knowledge and behavior in practice. Physicians are more knowledgeable than ever about autism due to increase in awareness campaigns, media attention, and funding for research studies. So why is there still a gap between knowledge and practice? And why don’t many physicians screen?

Physicians cite many challenges that may influence their decisions on whether or not to screen routinely in practice. Among these are:

  • Lack of training
  • Lack of time
  • Lack of reimbursement by insurance companies
  • Physician perceptions about fears and benefits of screening
  • Breaking bad news to families
  • Concerns about over referrals
  • Lack of confidence in results of early intervention

However, in spite of the perceived challenges of screening, two conditions have been shown to influence a physician’s willingness to act when a developmental concern is indicated: a sense of urgency and a level of certainty (Kennedy, Regehr, Rosenfield, Roberts & Lingard, 2004).

If one considers the latest information about early brain plasticity and the very powerful influence of early intervention on the developing brain, a sense of urgency is an absolute must whenever a parent expresses a developmental concern. The use of validated screening tools in practice strengthens a clinician’s level of certainty by providing a measure of confidence to make the referral for further evaluation.

The First Signs program is hoping to alleviate these perceived challenges by offering training programs in participating states and information on this Web site, such as recommendations for organizing a pediatric office to implement successful screening, advice on delivering bad news to families, information about current screening tools available and evidence of the efficacy of Early Intervention.

Follow up with referrals; Progress can be made
It is important to have on file contact information for local agencies, services, and specialists where families can go to for help during the referral process. Oftentimes, physicians may not know of local resources that are available or may not be satisfied with the caliber of these services. Take the time to find out for the future of your patients.  Once you have made the appropriate referrals, be sure to follow up with families to see how they are doing. Progress will be made with the proper supports and services in place. The process starts with you.

"One of the greatest joys out of all this is the day that the child shows up— you've delivered the bad news six months ago and the family's done what you've told them to do—they come back in and you've got a child who's looking at you. Now he's developing words and play skills are beginning to expand. The parent looks terrific and the kid looks terrific and you're saying, 'wow, this is terrific, this is really great stuff'."> (Margaret L. Bauman, M.D., Pediatric Neurologist)

Sharing Concerns: Parent to Parent
Many friends, relatives, or caregivers may have concerns about a child’s development, but are unsure of how to raise the issue with the parents. It is crucial to pursue any concerns, to ensure early and appropriate interventions; however, it can be difficult to do so.

Drawing on the experience of parents, this essay also provides a list of Do’s and Don’ts, such as:

  • Listen to the child’s parent, start with their observations or concerns
  • Always be supportive, never judgmental
  • Avoid jargon, labels, and terminology
  • Keep it positive; emphasize ‘ruling out’ anything serious

No parent wants to hear concerns about a child, particularly regarding a child’s development. All parents naturally want to protect their child. But, if a child isn’t meeting developmental milestones, or is exhibiting one of the absolute indicators or “red flags,” it is crucial that the child be properly screened. In order for this to happen, many friends, grandparents, and clinicians find themselves in the unenviable role of having to discuss developmental screenings with a parent.

Developmental delays and disorders are still poorly understood by much of our society. Few people understand the range of developmental disorders, let alone the opportunities for treatment and intervention. Many of us may recognize the differences in the physical features of children with Cerebral Palsy or Down Syndrome; however, we often aren’t aware of more subtle “hidden disorders” such as autism and how they present themselves in babies and toddlers.

The lack of knowledge about developmental disorders is further compounded by stigma. Sadly, what is not understood is often feared. This fear may prevent a parent from pursuing questions or concerns about a child’s development. This fear may also prevent those close to the parent—caregivers, grandparents, or friends—from sharing their concerns.

Some caregivers, and even clinicians, may have concern about “labeling” a child. A diagnosis doesn’t have to be a “label” —an appropriate diagnosis may describe a child’s challenges, but should never define a child. If a child is experiencing developmental delays, the specific diagnosis enables that child to have access to the most appropriate educational programs and therapies, such as occupational, speech, and physical therapy.

Early identification and intervention complement the core values of parenting: to seek to understand each child as a unique individual and to meet each child’s distinct needs in order to prepare them for adulthood. A child, who is more fully understood, with respect to his/her individual strengths and weaknesses, will have a better quality of life. The goal is simply to help every child reach his or her fullest potential.

If you are concerned about a child’s development, and want to bring it to the attention of the child’s parent, here are a few Do’s and Don’ts:
DO:
1. DO:  Set the stage for a successful conversation.
“My mother invited me to go for a long walk to tell me what was concerning her about my child. It confirmed my own suspicions. After, we had a long cry for ourselves over it.”

Choosing the right time and place for a conversation to share your concerns is very important. Try to speak in person at a time when there will be no interruptions. Arrange to meet in a private setting. Dedicate as much time as you need to have a full conversation. Understand that emotions may be unpredictable. Be ready to offer help.

2. DO:  Start with the observations, questions, or concerns of the child’s parent:
“It is critical to respect a parent’s perspective; begin with a clear understanding of whether or not they may have concerns, and what those might be.”

It’s important to assess where a parent stands in relation to understanding his/her child’s development before sharing your own concerns. The parent may already sense a problem and just not have the words to articulate it. Gently probe and ask questions that will allow a parent to share their own observations, questions, or concerns first. Then share your own observations. By doing so, you will open an exchange and may even validate a parent’s hidden concerns and fears.

3. DO:  Put yourself in the parent’s shoes. Be supportive, not judgmental.
“If you want to talk to a parent, please say it in a loving way. It might be good to begin by making a positive comment about the child’s strengths and by reinforcing the parent’s skills, love, and dedication to the child.”

Some of the most memorable conversations that parents of children with special needs report are those that take place at the critical moment a first concern is expressed. An empathetic approach goes much further in establishing trust and understanding than a judgmental or emotionally-closed or -charged one. Your tone and manner should be open and available. Whatever the outcome, in the long run, the parent will remember and appreciate your discussion if it is framed in a caring way.

4. DO:  Focus on milestones, absolute indicators, and the need to “rule out” anything serious.
“It is such an emotional subject, with so little that made sense. Milestones made sense to me.”

Give the parent something positive to read (see our developmental checklist of hallmark milestones and red flags). The checklist gives parents something to think about and consider, but never puts a label on it. It gets the conversation started with the child’s physician and provides specific information about strengths and areas of challenge.

5. DO:  Refer parents and caregivers to other resources.  Some parents need to come to this understanding on their own.
“I remember seeing a Web site that seemed to describe many of my son’s unique and, frankly, troubling behaviors. As much as I wanted it to be wrong, the more I read the better I understood that something was going on.”

Seeing developmental disorders described in writing, whether through literature or on the Web, allows a parent to make the match with his/her own child’s behaviors and needs. It provides an objective description of common features and allows the parent to come into recognizing developmental concerns at their own pace.

6. DO:  Emphasize the importance of early identification and intervention.
“Early intervention is the key. Tell the parent that the earlier you catch a child, the easier it is to help the child...if you let it go too long, it just takes that much longer for the child to gain ground.”

One way to look at developmental concerns is that if a child had signs of a serious and persistent physical illness, like asthma, you would want to get it checked out as soon as possible to rule it out. If there really were a problem, it would only make it worse by not doing so. Developmental delays are no different. By not receiving timely interventions for concerns around language, behavior, and social connectedness, the problems will not go away, but will worsen over time. And what’s most hopeful is that early intervention works, improving life in the long and short term for both the child and the family. So life will get better once interventions are underway.

7. DO:  Be confident that sharing your concerns is always the right thing to do. The hardest part is finding the right words and getting started.
“When my son was 18 months old with no language, a friend said that I should march him right down to the pediatrician’s office. I have to admit I was a bit offended but when I found out her advice was right, I thanked her. Most people would just sit back on their hands and not say anything. Her delivery lacked some tact, but she got me going.”

Try role playing what you will say first. Express what you have observed that gives you concern in a caring, supportive way. By doing so, it may lower your own anxiety and give you the confidence to have a heart-to-heart with a positive outcome.

8. DO:  By sharing your concerns, you may help to validate what a parent is afraid or unable to express.
“I felt comfortable in my denial. I just thought ‘oh, this too shall pass.’ But when my sister expressed her concern, it articulated what I was too afraid to say. Every now and then I need someone to shake me out of my comfort zone and get me moving.”

Often a parent may have a nagging and persistent subliminal fear that something is indeed wrong developmentally, but they may be afraid to say it out loud. All they may need is to hear the same concern from someone else to confirm their suspicions. These outcomes are usually described by parents as bringing them relief. Now they don’t feel so alone. It provides the impetus to take the next step for their child.

DON’T:
1. DON’T:  Don’t dismiss a parent’s concerns.
“Just listen and observe. Take the time to listen to the parent and observe the child before you do, or say, anything.”
If a parent shares concerns with you directly, you have a unique opportunity to help them. Listening is often all that is needed to help parents channel their concerns into words and actions.

2. DON’T:  Don’t compare one child to another. Each is unique.
“I’ve heard the story about how a child had no language and then one day, started to speak in volumes, almost miraculously. I’ve heard about Einstein being a late talker as another way to comfort me. Although well-meaning tales, they did nothing to help me move forward to help my child. They only prolonged my self-doubt.”

Often family and friends will share a story meant to give comfort to a parent that gives an anecdote of someone else who struggled with early developmental concerns, only to outgrow them in a dramatic or famous way. Instead of having the intended effect of providing comfort and ruling out concerns, parents often sense that they do not address their child’s unique concerns and dismiss them. Or they may provide more insecurity to a first time parent who is already experiencing self-doubt. Either way, anecdotes are not useful. It is more important to think about the particular child in question.

3. DON’T:  Don’t use labels, technical jargon, or loaded terminology.
“When the teacher at my son’s preschool said that he ‘needed Special Education,’ I thought she meant that she thought he was mentally retarded; I just shut down. Similarly, when my doctor told me she’d ‘Seen kids like him before’, I stopped listening.”

It’s probably too scary to mention a specific disorder to a parent right out of the gate. Many disorders are misunderstood and just the mention of them can bring up great fear in parents who may shut down. Sometimes giving a parent an article or book to read is enough to make the connection.

4. DON’T:  Don’t scare a parent: keep it positive.
“I told my doctor that my daughter’s daycare provider had some concerns about her, but I disagreed. ‘Wasn’t it OK for a child to be a little bit different? Why label?’ I’ll never forget my doctor’s simple, steady words: ‘Just get it checked out, just rule it out. You have nothing to lose.’ She was right. If it hadn’t been for the extra help my son got by being identified at such a young age, he—actually, WE—would never be doing as well today.”

If a parent is encouraged to see their pediatrician with developmental concerns about their child, there will be one of two outcomes, but each will have its positive aspects. If concerns are ruled out, parents can rest easy. If there are indeed confirmed concerns, seeking help through evaluation and referral will eventually get the family back on a healthy developmental path.

Checking out concerns can do no harm. Things can only get better.

This is a positive message that family and friends can share with parents to encourage them to seek help.

See Next Steps for advice on how to support a loved one whose child has been recently diagnosed.

 

Mayo Clinic

Signs and symptoms

In general, children with autism have problems in three crucial areas of development — social skills, language and behavior. The most severe autism is marked by a complete inability to communicate or interact with other people.
Because the symptoms of autism vary widely, two children with the same diagnosis may act quite differently and have strikingly different skills.

If your child has autism, he or she may develop normally for the first few months — or years — of life and then later become less responsive to other people, including you. You may recognize the following signs in the areas of social skills, language and behavior:

Social skills

  • Fails to respond to his or her name
  • Has poor eye contact
  • Appears not to hear you at times
  • Resists cuddling and holding
  • Appears unaware of others' feelings
  • Seems to prefer playing alone — retreats into his or her "own world" 
Language
  • Starts talking later than other children
  • Loses previously acquired ability to say words or sentences
  • Does not make eye contact when making requests
  • Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  • Can't start a conversation or keep one going
  • May repeat words or phrases verbatim, but doesn't understand how to use them

 

Behavior

  • Performs repetitive movements, such as rocking, spinning or hand-flapping
  • Develops specific routines or rituals
  • Becomes disturbed at the slightest change in routines or rituals
  • Moves constantly
  • May be fascinated by parts of an object, such as the spinning wheels of a toy car
  • May be unusually sensitive to light, sound and touch

Young children with autism also have a hard time sharing experiences with others. When someone reads to them, for example, they're unlikely to point at pictures in the book. This early-developing social skill is crucial to later language and social development.

As they mature, some children with autism become more engaged with others and show less marked disturbances in behavior. Some, usually those with the least severe impairments, eventually may lead normal or near-normal lives. Others, however, continue to have severe impairments in language or social skills, and the adolescent years can mean a worsening of behavior problems.

The majority of children with autism are slow to acquire new knowledge or skills. However, some children with autism have normal to high intelligence. These children learn quickly yet have trouble communicating, applying what they know in everyday life and adjusting in social situations. An extremely small number of children with autism are "autistic savants" and have exceptional skills in a specific area, such as art or math.

When to seek medical advice

Babies develop at their own pace, and many don't follow exact timelines found in some parenting books. But children with autism usually show some signs of delayed development by 18 months. If you suspect that your child may have autism, discuss your concerns with your doctor. The earlier treatment begins, the more effective it will be.

Your doctor may recommend further evaluation if your child:

  • Doesn't babble or coo by 12 months
  • Doesn't gesture — such as point or wave — by 12 months
  • Doesn't say single words by 16 months
  • Doesn't say two-word phrases by 24 months
  • Loses previously acquired language or social skills at any age

 

National Institute Of Neurological Disorders and Stroke
What are some common signs of autism?

There are three distinctive behaviors that characterize autism.    Autistic children have difficulties with social interaction, problems with verbal and nonverbal communication, and repetitive behaviors or narrow, obsessive interests.  These behaviors can range in impact from mild to disabling.

The hallmark feature of autism is impaired social interaction.  Parents are usually the first to notice symptoms of autism in their child.  As early as infancy, a baby with autism may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time.  A child with autism may appear to develop normally and then withdraw and become indifferent to social engagement. 

Children with autism may fail to respond to their name and often avoid eye contact with other people.  They have difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior.  They lack empathy. 

Many children with autism engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging.  They also tend to start speaking later than other children and may refer to themselves by name instead of “I” or “me.”  Children with autism don’t know how to play interactively with other children.  Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking. 

Many children with autism have a reduced sensitivity to pain, but are abnormally sensitive to sound, touch, or other sensory stimulation.  These unusual reactions may contribute to behavioral symptoms such as a resistance to being cuddled or hugged.   

Children with autism appear to have a higher than normal risk for certain co-existing conditions, including fragile X syndrome (which causes mental retardation), tuberous sclerosis (in which tumors grow on the brain), epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder.  For reasons that are still unclear, about 20 to 30 percent of children with autism develop epilepsy by the time they reach adulthood.  While people with schizophrenia may show some autistic-like behavior, their symptoms usually do not appear until the late teens or early adulthood.  Most people with schizophrenia also have hallucinations and delusions, which are not found in autism.

Do symptoms of autism change over time?
For many children, autism symptoms improve with treatment and with age.  Some children with autism grow up to lead normal or near-normal lives.  Children whose language skills regress early in life, usually before the age of 3, appear to be at risk of developing epilepsy or seizure-like brain activity.  During adolescence, some children with autism may become depressed or experience behavioral problems.  Parents of these children should be ready to adjust treatment for their child as needed.

 

Web MD

Core Symptoms

The severity of symptoms varies greatly between individuals; however, all people with autism have some core symptoms in the areas of:

Social interactions and relationships. Symptoms may include:

  • Significant problems developing nonverbal communication skills, such as eye-to-eye gazing, facial expressions, and body posture.
  • Failure to establish friendships with children the same age.
  • Lack of interest in sharing enjoyment, interests, or achievements with other people.
  • Lack of empathy. People with autism may have difficulty understanding another person's feelings, such as pain or sorrow.

Verbal and nonverbal communication. Symptoms may include:

  • Delay in, or lack of, learning to talk. As many as 50% of people with autism never speak.2
  • Problems taking steps to start a conversation. Also, people with autism have difficulties continuing a conversation once it has begun.
  • Stereotyped and repetitive use of language. People with autism often repeat over and over a phrase they have heard previously (echolalia).
  • Difficulty understanding their listener's perspective. For example, a person with autism may not understand that someone is using humor. They may interpret the communication word for word and fail to catch the implied meaning.

Limited interests in activities or play. Symptoms may include:

  • An unusual focus on pieces. Younger children with autism often focus on parts of toys, such as the wheels on a car, rather than playing with the entire toy.
  • Preoccupation with certain topics. For example, older children and adults may be fascinated by train schedules, weather patterns, or license plates.
  • A need for sameness and routines. For example, a child with autism may always need to eat bread before salad and insist on driving the same route every day to school.
  • Stereotyped behaviors. These may include body rocking and hand flapping.

Symptoms During Childhood

Symptoms of autism are usually noticed first by parents and other caregivers sometime during the child's first 3 years. Although autism is present at birth (congenital), signs of the disorder can be difficult to identify or diagnose during infancy. Parents often become concerned when their toddler does not like to be held; does not seem interested in playing certain games, such as peekaboo; and does not begin to talk. They also may be confused about their child's hearing abilities. It often seems that a child with autism does not hear, yet at other times, he or she may appear to hear a distant background noise, such as the whistle of a train.

With early and intensive treatment, most children improve their ability to relate to others, communicate, and help themselves as they grow older. Contrary to popular myths about children with autism, very few are completely socially isolated or "live in a world of their own."

Symptoms During Adolescent And Teen Years

During the teen years, the patterns of behavior often change. Many teens gain skills but still lag behind in their ability to relate to and understand others. Puberty and emerging sexuality may be more difficult for adolescents and teens with autism than for others this age. Teens are at a slightly increased risk for developing problems related to depression, anxiety, and epilepsy.

Symptoms In Adulthood

Some adults with autism are able to work and live on their own. The degree to which an adult with autism can lead an independent life is related to intelligence and ability to communicate. At least 33% are able to achieve at least partial independence.

Some adults with autism need a lot of assistance, especially those with low intelligence who are unable to speak. Part- or full-time supervision can be provided by residential treatment programs. At the other end of the spectrum, adults with high-functioning autism are often successful in their professions and able to live independently, although they typically continue to have some difficulties relating to other people. These individuals usually have average to above-average intelligence.

Other Symptoms

Many people with autism have symptoms similar to attention deficit hyperactivity disorder (ADHD). But these symptoms, especially problems with social relationships, are more severe for people with autism. For more information, see the topic Attention Deficit Hyperactivity Disorder.

About 10% of people with autism have some form of savant skills-special limited gifts such as memorizing lists, calculating calendar dates, drawing, or musical ability.

Many people with autism have unusual sensory perceptions. For example, they may describe a light touch as painful and deep pressure as providing a calming feeling. Others may not feel pain at all. Some people with autism have strong food likes and dislikes and unusual preoccupations.

Other Conditions

Autism is one of several types of pervasive developmental disorders (PDDs), also called autism spectrum disorders (ASD). It is not unusual for autism to be confused with other PDDs, such as Asperger's disorder or syndrome, or to have overlapping symptoms. A similar condition is called pervasive developmental disorder-NOS (not otherwise specified). PDD-NOS occurs when children display similar behaviors but do not meet the criteria for autism. It is commonly called just PDD. In addition, other conditions with similar symptoms may also have similarities to or occur with autism.

 

Wrong Diagnosis.com
The list of signs and symptoms mentioned in various sources for Autism includes the 48 symptoms listed below:

Note that Autism symptoms usually refers to various symptoms known to a patient, but the phrase Autism signs may refer to those signs only noticable by a doctor.

More ways to research these symptoms: To research other symptoms use the symptom center, or to research causes of more than one symptom in combination, try our multi-symptom search.