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Hello, my name is Grace and two of my children have Autism.

Zyan was diagnosed on his third birthday.

Irene was diagnosed on May 2, 2008.

Zyan:

Before the diagnosis, I didn't know anything about Autism but I knew that there was something wrong my son. Zyan was born a healthy 10 lb 14 oz baby with no problems at delivery. He had sat up, crawled and walked on time. It wasn't until he was around 18 months old that I knew something wasn't right with his development. Zyan's speech wasn't clear and he wasn't talking as much. He wasn't able to look at me directly, started having bad tantrums and seemed to be withdrawn. He would only eat certain foods.

When I had asked his doctor, family members and friends if they knew what could be wrong, some of them told me it was because boys developed slower than girls. I thought that his hearing was effecting his speech. He was seen at the Eye and Ear Clinic and was tested three times, two were inconclusive and one passing, so his hearing was ruled out. A friend had told me about the Alliance for Infants and Toddlers, a early intervention program. I signed up with them to see if they could help me with Zyan. Even then with all the services they provided, like monitoring services in movement, language and communication, social and play skills, we still didn't know what was going on with Zyan

It wasn't until a routine checkup with his pediatrician that he wanted Zyan evaluated. The evaluation was at the Children's Developmental Unit. It consisted of a series of questions and tests. I had to wait a couple of weeks before getting the report that Zyan had Autism. The staff was so supportive and gave me tons of information and resources, but all I wanted to know is how, what, when and why. I cried so hard for him. My only son wasn't suppose to be this way. My heart was so drained. I was eager to find out why.

I had to find out so I would know how to tell my family. I went online and to our local library. I was able to get literature, videos and books that were suitable for each of my children. With the videos my children were able to see how Autism effects children. This way they could understand why Zyan behaved certain ways. As we watched the videos, we cried, laughed and at times would say that's Zyan. Also early intervention has somewhat successful for Zyan.

Zyan is now in kindergarten. He still has difficulty with speech and trying to keep up with the other kids as far academics. Zyan's behavior is great and he does want to learn. The school has lots to learn about Autism. It has been a fight to keep him there in the least restrictive environment. Next school year I hope his school has gotten educated over the summer and will give him better services.

Irene:

Irene is 14 but at the age of 3 had gotten lead posioning. At that time her doctors never suggested a evaluation. All through school she had to have speech and learning support. Her doctors never told me it could be anything more. Her elementary school had always told me she had signs of having a disabilty. I was told by her school, about 5 years ago to get her on SSI so that I could receive supportive services for her. SSI had sent me to their "Specialist" who had told me she was fine. The Specialist told me her behavior was due to the "lead". So we just learned to deal with it.

My family was at our local park where I met a Patricia, who was there with her 15 year Autistic daughter. She knew right away that Zyan had Autism. After we had talked for awhile she had asked me did anyone ever told me that Irene could have Autism. I was always told that the high level of lead had caused her to be delayed. She advised me to take her to Childrens Hosptital and let the evaluate her. At Childrens Hospital on May 2, 2008 they told me what I suspected since Zyan's diagnosis, she had Autism/PDD

*PDD or pervasive developmental disorder is a behavioral disorder of speech, communication, social interaction, and repetitive type compulsive behavior. Typically, kids with PDD's will not get diagnosed initially. The statistics indicate that only about 10% of kids with autistic disorders get diagnosed following the initial complaint of the parents that "something is wrong" with their child.

Irene has difficulties with multi-tasks, gets easily frustrated when she doesn't understand certain things. She is truly a sweet heart, loving and caring. She feels as if she has no friends and that kids are making fun of her. She is likes to do things in order. I am currently waiting for services at our local clinic for her.I was told the main thing she needs to work on is language skills and social skills.

Parents, go by your gut, don't let anyone tell you just anything, it is your child(ren). She has been like this for 14 years and will be a adult in 4 years. I really feel that the system let me down. I was given the wrong diagnosis for years. I am going to take all of this hurt and do the positive. I want to educate, get educated and help other families.

What is Early Intervention?

Early Intervention is a variety of supports and services designed to build and enhance the natural learning that occurs in the early years. Supports and services are provided in the home, child care site and other community settings identified by the family. Any child, age birth to three years, living in Allegheny County is eligible for a developmental screen through Early Intervention.

He currently receives Wrap Around Services and now goes to public school. He still has his days but he is trying to do his best. I love my little angel and pray that whatever the future becomes that he will be alright. Zyan can count up to five and say some of the alphabets. Alot of his words are still hard to understand. Speech and safety are his biggest barriers.

What are Wrap Around Services?

Wrap Around Services, children can receive a home-based program using 10 to 40 hours of therapy each week. For school aged children, interventions may include Therapeutic Staff Support (TSS) in school, where the autism specialists can provide educational consultation and assist with the Individualized Education Plan. In addition, home-based therapy in behavior and social skills with family members may also be included. Lastly, for other individuals with autism who are educationally competent but who struggle with social awareness, they will assist with the development of complex social understanding.

More on Autism?

Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 66 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

Autism was first identified in 1943 by Dr. Leo Kanner of Johns Hopkins Hospital. At the same time, a German scientist, Dr. Hans Asperger, described a milder form of the disorder that is now known as Asperger Syndrome (read more). These two disorders are listed in the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) as two of the five developmental disorders that fall under the autism spectrum disorders. The others are Rett Syndrome, PDD NOS (Pervasive Developmental Disorder), and Childhood Disintegrative Disorder. All of these disorders are characterized by varying degrees of impairment in communication skills and social abilities, and also by repetitive behaviors.

Autism spectrum disorders can usually be reliably diagnosed by age 3, although new research is pushing back the age of diagnosis to as early as 6 months. Parents are usually the first to notice unusual behaviors in their child or their child's failure to reach appropriate developmental milestones. Some parents describe a child that seemed different from birth, while others describe a child who was developing normally and then lost skills. Pediatricians may initially dismiss signs of autism, thinking a child will "catch up," and may advise parents to "wait and see." New research shows that when parents suspect something is wrong with their child, they are usually correct. If you have concerns about your child's development, don't wait: speak to your pediatrician about getting your child screened for autism.

If your child is diagnosed with autism, early intervention is critical to gain maximum benefit from existing therapies. Although parents may have concerns about labeling a toddler as "autistic," the earlier the diagnosis is made, the earlier interventions can begin. Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure. Research indicates, however, that early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with autism spectrum disorders. As soon as autism is diagnosed, early intervention instruction should begin. Effective programs focus on developing communication, social, and cognitive skills.

Facts about Autism

Did you know…

1 in 66 children is diagnosed with autism. 1 in 49 boys is on the autism spectrum. 125 children are diagnosed per day. A new case is diagnosed almost every 20 minutes. More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. Autism is the fastest-growing serious developmental disability in the U.S.

Autism costs the nation over $90 billion per year, a figure expected to double in the next decade Autism receives less than 5% of the research funding of many less prevalent childhood diseases Boys are four times more likely than girls to have autism There is no medical detection or cure for autism.

Thimerosal and Vaccines

Despite wide spread rumors in the medical community that Thimerosal is no longer used in vaccines; research scientists report that vaccines still contain Thimerosal. Find out what your doctor may have never told you regarding the dangers of Thimerosal. Read the material safety data sheet here and ask yourself why would anyone allow this substance to be injected into infants and children.

Preservative-Free does not necessarily mean a Thimerosal-Free product. This World Health Organization document states that products using Thimerosal as part of the manufacturing process do not have to label the product as Thimerosal containing. In the last 20 years there has been an increase in the diagnosis of autism in pockets around the world, which cannot be explained by genetics alone, nor can this increase be secondary to only increased awareness.

A California review completed in 1999 showed that autism (all categories) increased 210.43 percent, while other categories such as cerebral palsy, mental retardation and epilepsy increased 42.84 percent, 48.74 percent, and 30.69 percent respectively. In comparing autism with other pervasive developmental disorders (PDD), autism (CDER level) increased 272.93 percent, while other PDD types increased 1,965.79 percent.

Read the study that most doctors rely on to validate their notion that mercury in vaccines causes no harm. The study, of course was co-authored by an employee of GlaxoSmithKline, one of the largest makers of vaccines in the world.

A Short Story

Nobody Can See.....

Nobody can see my disability. I look just like every other kid-attractive, walking, making sounds. They can't see how my neurons are scrabbled in my brain. They can't see the misconceptions between the left and right brain. Nobody can see I have autism.

Nobody can see that my body is sick. No one can see that my stomach is in knots from my digestive system not working. No one can that my body and mind are starving because my cells don't make the right enzymes to digest food. No one see that I suffer from low blood sugar because I can't properly metabolize nourishment.

No one can see that my body is attacking its own nerve cells from auto-immune dysfunctions. No one can see that mercury lead and arsenic cannot be excreted from my body, so it keeps building up in my brain. No one understands that my body cannot tolerate normal enjoyments for children, like bright, vivid colors and loud noises. I desperately want to be a kid and enjoy these things, but my body just won't let me.

But everyone can see how inappropriate my behavior can be when I am out in public. Everyone can see how immature I can be compared to other kids my age. Everyone sees the 2-year old tantrums when things have been too overwhelming for me. Everyone sees my frustration from trying to cope. Everyone sees my screaming and fighting. Everyone just assumes I'm being bad, not that my body hurts, my eyes are in pain from colors, my ears ring with loud noises not heard by others.

Everyone sees my tantrums when I don't get my way. No one sees that I can't explain my fear when I think I'm not being understood. Everyone may see my screams when my mom takes something away from me. No one can see that having something of comfort can keep my fears under control for me, and taking it away makes my nerves explodes in anxiety.

No one understands how hard I have to work to keep my behaviors from reacting to the chemical imbalances in my body that makes me feel horrible. No one can see that, no matter how hard I try, sometimes I cannot control it. No one can see the shame I feel after I've had a meltdown from my body's problems.

What they don't see is I am a person. I have feelings and want to be loved and accepted like everyone else. What they don't see is that, when they look at me like I need a good spanking, I understand that I'm not capable of controlling my body. What they don't see is that I scream because I don't know how to say "HELP ME" .

What they don't see is that I hear every ugly word they say, but for the life of me, I can't make my mouth say what I'm feeling. But they don't see that as a disability. They say I am unmanageable. They say I am a problem. But I am not a problem. I HAVE AUTISM. My mom has taken me to more doctors and specialist than you can ever imagine. She's read more books and done more research on my disease than a parent would ever want.

She has tried special diet, supplements, drugs and various metabolic therapies. She has PRAYED for GUIDANCE and asked for discernment on how to help my body. And behaviors, OH YES, has she tried everything to help my behavior. Stop telling her all I need is a spanking. If spanking would stop all this, my mom would gladly exchange my disability for a spanking. She knows better than all of you what I need to help me, and what we both need is your understanding, not ignorance.

I just want to be accepted and understood. No blamed and ashamed, I want to be appreciated for my gifts. I do have some if you look more closely. I want to be cared for as a person. I want you to care, even when I act like I don't. I want to be respected, just like you do.

I want you to respect my mom and dad for all the hard work they have done to help me try to lead a normal a life as possible. I want you to respect my family and all the struggles we have to endure because of our love for each other. I want to be LOVED like any other child. And need you to role model respectful behavior for me so I can be respectful too.

I want you to love me just like JESUS would.

What Are the Autism Spectrum Disorders?

The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome.2 Prevalence studies have been done in several states and also in the United Kingdom, Europe, and Asia. Prevalence estimates range from 2 to 6 per 1,000 children. This wide range of prevalence points to a need for earlier and more accurate screening for the symptoms of ASD.

The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions. Pediatricians, family physicians, daycare providers, teachers, and parents may initially dismiss signs of ASD, optimistically thinking the child is just a little slow and will "catch up." Although early intervention has a dramatic impact on reducing symptoms and increasing a child's ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten.

All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look. Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.

Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other children the same age. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent.

Some parents report the change as being sudden, and that their children start to reject people, act strangely, and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable.

ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Webcast, Autism Among Us.

Possible Indicators of Autism Spectrum Disorders

Does not babble, point, or make meaningful gestures by 1 year of age

Does not speak one word by 16 months

Does not combine two words by 2 years

Does not respond to name

Loses language or social skills

Some Other Indicators:

Poor eye contact

Doesn't seem to know how to play with toys

Excessively lines up toys or other objects

Is attached to one particular toy or object

Doesn't smile

At times seems to be hearing impaired

Social Symptoms

From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile.

In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to parents' displays of anger or affection in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to "read." To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of the expected and typical attachment behavior.

Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues—whether a smile, a wink, or a grimace—may have little meaning. To a child who misses these cues, "Come here" always means the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with ASD have difficulty seeing things from another person's perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with ASD may lack such understanding. This inability leaves them unable to predict or understand other people's actions.

Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the form of "immature" behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more difficult. They have a tendency to "lose control," particularly when they're in a strange or overwhelming environment, or when angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair, or bite their arms.

Communication Difficulties

By age 3, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is "no."

Some children diagnosed with ASD remain mute throughout their lives. Some infants who later show signs of ASD coo and babble during the first few months of life, but they soon stop. Others may be delayed, developing language as late as age 5 to 9. Some children may learn to use communication systems such as pictures or sign language.

Those who do speak often use language in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. Some ASD children parrot what they hear, a condition called echolalia. Although many children with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3.

Some children only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but have great difficulty in sustaining a conversation. The "give and take" of normal conversation is hard for them, although they often carry on a monologue on a favorite subject, giving no one else an opportunity to comment. Another difficulty is often the inability to understand body language, tone of voice, or "phrases of speech." They might interpret a sarcastic expression such as "Oh, that's just great" as meaning it really IS great.

While it can be hard to understand what ASD children are saying, their body language is also difficult to understand. Facial expressions, movements, and gestures rarely match what they are saying. Also, their tone of voice fails to reflect their feelings. A high-pitched, sing-song, or flat, robot-like voice is common. Some children with relatively good language skills speak like little adults, failing to pick up on the "kid-speak" that is common in their peers.

Without meaningful gestures or the language to ask for things, people with ASD are at a loss to let others know what they need. As a result, they may simply scream or grab what they want. Until they are taught better ways to express their needs, ASD children do whatever they can to get through to others. As people with ASD grow up, they can become increasingly aware of their difficulties in understanding others and in being understood. As a result they may become anxious or depressed.

Repetitive Behaviors

Although children with ASD usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position.

As children, they might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. If someone accidentally moves one of the toys, the child may be tremendously upset. ASD children need, and demand, absolute consistency in their environment. A slight change in any routine—in mealtimes, dressing, taking a bath, going to school at a certain time and by the same route—can be extremely disturbing. Perhaps order and sameness lend some stability in a world of confusion.

Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. For example, the child might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is great interest in numbers, symbols, or science topics.

Problems That May Accompany ASD

Sensory problems. When children's perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the child's experiences of the world can be confusing. Many ASD children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping the shoreline—will cause these children to cover their ears and scream.

In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain. An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm.

Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests.

Seizures. One in four children with ASD develops seizures, often starting either in early childhood or adolescence.4 Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a "blackout"), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG (electroencephalogram—recording of the electric currents developed in the brain by means of electrodes applied to the scalp) can help confirm the seizure's presence. In most cases, seizures can be controlled by a number of medicines called "anticonvulsants." The dosage of the medication is adjusted carefully so that the least possible amount of medication will be used to be effective.

Fragile X syndrome. This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome. Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome.

Tuberous Sclerosis. Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASD. One to 4 percent of people with ASD also have tuberous sclerosis.

The Diagnosis of Autism Spectrum Disorders

Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD.2 In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of ASD may be apparent in the first few months of a child's life, or they may appear at any time during the early years. For the diagnosis, problems in at least one of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during "well child" check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.

Screening

A "well child" check-up should include a developmental screening test. If your child's pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child's development will be essential in helping to screen your child.7 Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones. Several screening instruments have been developed to quickly gather information about a child's social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT),the modified Checklist for Autism in Toddlers (M-CHAT),the Screening Tool for Autism in Two-Year-Olds (STAT),and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older).

Some screening instruments rely solely on parent responses to a questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high-functioning autism or Asperger syndrome. During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism.

The Autism Spectrum Screening Questionnaire (ASSQ), the Australian Scale for Asperger's Syndrome, and the most recent, the Childhood Asperger Syndrome Test (CAST), are some of the instruments that are reliable for identification of school-age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.

If, following the screening process or during a routine "well child" check-up, your child's doctor sees any of the possible indicators of ASD, further evaluation is indicated.

Comprehensive Diagnostic Evaluation

The second stage of diagnosis must be comprehensive in order to accurately rule in or rule out an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with ASD.

Because ASD's are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neurologic and genetic assessment, along with in-depth cognitive and language testing. In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R)and the Autism Diagnostic Observation Schedule (ADOS-G). The ADI-R is a structured interview that contains over 100 items and is conducted with a caregiver. It consists of four main factors—the child's communication, social interaction, repetitive behaviors, and age-of-onset symptoms. The ADOS-G is an observational measure used to "press" for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.

Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS). It aids in evaluating the child's body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The child's behavior is rated on a scale based on deviation from the typical behavior of children of the same age.

Two other tests that should be used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral-motor stage in which they put any and everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.

Customarily, an expert diagnostic team has the responsibility of thoroughly evaluating the child, assessing the child's unique strengths and weaknesses, and determining a formal diagnosis. The team will then meet with the parents to explain the results of the evaluation. Although parents may have been aware that something was not "quite right" with their child, when the diagnosis is given, it is a devastating blow. At such a time, it is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to ask questions and get recommendations on what further steps they should take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions.

Available Aids

When your child has been evaluated and diagnosed with an autism spectrum disorder, you may feel inadequate to help your child develop to the fullest extent of his or her ability. As you begin to look at treatment options and at the types of aid available for a child with a disability, you will find out that there is help for you. It is going to be difficult to learn and remember everything you need to know about the resources that will be most helpful.

Write down everything. If you keep a notebook, you will have a foolproof method of recalling information. Keep a record of the doctors' reports and the evaluation your child has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for your child; the more you know, the more effectively you can advocate.

For every child eligible for special programs, each state guarantees special education and related services. The Individuals with Disabilities Education Act (IDEA) is a Federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide.

By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the child's Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the child's goals. When your child's IEP is developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of the public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well).

Parents play an important part in creating the program, as they know their child and his or her needs best. Once your child's IEP is developed, a meeting is scheduled once a year to review your child's progress and to make any alterations to reflect his or her changing needs.

If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be the lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the child's home or a place familiar to the child.

The services provided are written into an Individualized Family Service Plan (IFSP) that is reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them in daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD.

There is a list of resources at the back of the brochure that will be helpful to you as you look for programs for your child.

Treatment Options

There is no single best treatment package for all children with ASD. One point that most professionals agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.

Before you make decisions on your child's treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child's treatment based on your child's needs. You may want to visit public schools in your area to see the type of program they offer to special needs children.

Guidelines used by the Autism Society of America include the following questions parents can ask about potential treatments:

Will the treatment result in harm to my child?

How will failure of the treatment affect my child and family?

Has the treatment been validated scientifically?

Are there assessment procedures specified?

How will the treatment be integrated into my child's current program?

Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.

The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:

How successful has the program been for other children?

How many children have gone on to placement in a regular school and how have they performed?

Do staff members have training and experience in working with children and adolescents with autism?

How are activities planned and organized?

Are there predictable daily schedules and routines?

How much individual attention will my child receive?

How is progress measured? Will my child's behavior be closely observed and recorded?

Will my child be given tasks and rewards that are personally motivating?

Is the environment designed to minimize distractions?

Will the program prepare me to continue the therapy at home?

What is the cost, time commitment, and location of the program?

Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states, "Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.

The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child-teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.

An effective treatment program will build on the child's interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child's attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child's earliest teachers, more programs are beginning to train parents to continue the therapy at home.

As soon as a child's disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center.

These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction. Included are behavioral methods, communication, occupational and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skills activities.

At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with the children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.

Children older than 3 years usually have school-based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home.

In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual child's needs.

Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher-functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions.

During middle and high school years, instruction will begin to address such practical matters as work, community living, and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living.23 All through your child's school years, you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child's progress.

Dietary and Other Interventions

In an effort to do everything possible to help their children, many parents continually seek new treatments. Some treatments are developed by reputable therapists or by parents of a child with ASD. Although an unproven treatment may help one child, it may not prove beneficial to another. To be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind trials, that would allow for a comparison between treatment and no treatment. Following are some of the interventions that have been reported to have been helpful to some children but whose efficacy or safety has not been proven.

Dietary interventions are based on the idea that 1) food allergies cause symptoms of autism, and 2) an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If parents decide to try for a given period of time a special diet, they should be sure that the child's nutritional status is measured carefully.

A diet that some parents have found was helpful to their autistic child is a gluten-free, casein-free diet. Gluten is a casein-like substance that is found in the seeds of various cereal plants—wheat, oat, rye, and barley. Casein is the principal protein in milk. Since gluten and milk are found in many of the foods we eat, following a gluten-free, casein-free diet is difficult.

A supplement that some parents feel is beneficial for an autistic child is Vitamin B6, taken with magnesium (which makes the vitamin effective). The result of research studies is mixed; some children respond positively, some negatively, some not at all or very little. In the search for treatment for autism, there has been discussion in the last few years about the use of secretin, a substance approved by the Food and Drug Administration (FDA) for a single dose normally given to aid in diagnosis of a gastrointestinal problem.

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 patients who received secretin and those who received a placebo.

Medications Used in Treatment

Medications are often used to treat behavioral problems, such as aggression, self-injurious behavior, and severe tantrums, that keep the person with ASD from functioning more effectively at home or school. The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed "off-label." This means they have not been officially approved by the FDA for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.

A child with ASD may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the "patient insert" that comes with your child's medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.

Anxiety and depression. The selective serotonin reuptake inhibitors (SSRI's) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRI's, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older. Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRI's safely, effectively, and at the lowest dose possible.

Behavioral problems. Antipsychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical antipsychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems. However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements.

Placebo-controlled studies of the newer "atypical" antipsychotics are being conducted on children with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).26 Results of the 8-week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long-term studies are needed to determine any long-term side effects. Other atypical antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.

Seizures. Seizures are found in one in four persons with ASD, most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.

Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children. Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your child's unique history and behavior will help your doctor decide which medication might be most beneficial.