Monthly Archives: June 2016

Treatments

There is no doubt in my mind that everyone that come across a diagnosis, no matter what the disease is, will start looking for available treatments and a cure to their problem. So one of the first thing I started looking for was what could I do to cure my child. I found out that while there is no known cure for autism, there are treatment and educational approaches that can address some of the challenges associated with the condition.

Most professionals agree that the sooner in life a child receives early intervention services, the better the child’s prognosis. As soon as autism is diagnosed, early intervention instruction should begin.

Early intervention services help children from birth to 3 years old (36 months) learn important skills. Effective programs focus on developing communication, social, and cognitive skills. Treatment works to minimize the impact of the core features associated deficits of ASD and to maximize functional independence and quality of life. Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs.

Early intensive behavioral intervention involves a child’s entire family working closely with a team of professionals. In some early intervention programs, therapists come into the home to deliver services. This can include parent training with the parent leading therapy sessions under the supervision of the therapist. Other programs deliver therapy in a specialized center, classroom or preschool.

In addition to communication, social, and cognitive deficits many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors.

Types of Treatments

There are many different types of treatments available. For example, auditory training, discrete trial training, vitamin therapy, anti-yeast therapy, facilitated communication, music therapy, occupational therapy, physical therapy, and sensory integration.

The different types of treatments can generally be broken down into the following categories:

· Behavior and Communication Approaches
· Dietary Approaches
· Medication
· Complementary and Alternative Medicine

Behavior and Communication Approaches

According to reports by the American Academy of Pediatrics and the National Research Council, behavior and communication approaches that help children with ASD are those that provide structure, direction, and organization for the child in addition to family participation.

Applied Behavior Analysis (ABA)

A notable treatment approach for people with an ASD is called applied behavior analysis (ABA). ABA has become widely accepted among health care professionals and used in many schools and treatment clinics. ABA encourages positive behaviors and discourages negative behaviors in order to improve a variety of skills. The child’s progress is tracked and measured.

There are different types of ABA. Following are some examples:

· Discrete Trial Training (DTT)

DTT is a style of teaching that uses a series of trials to teach each step of a desired behavior or response. Lessons are broken down into their simplest parts and positive reinforcement is used to reward correct answers and behaviors. Incorrect answers are ignored.

· Early Intensive Behavioral Intervention (EIBI)

This is a type of ABA for very young children with an ASD, usually younger than five, and often younger than three.

· Pivotal Response Training (PRT)

PRT aims to increase a child’s motivation to learn, monitor his own behavior, and initiate communication with others. Positive changes in these behaviors should have widespread effects on other behaviors.

· Verbal Behavior Intervention (VBI)

VBI is a type of ABA that focuses on teaching verbal skills.

The Lovaas Model consists of 20-40 hours of highly structured, discrete trial training, integrating ABA techniques into an early intervention program. The intervention typically begins when the child is between the ages of 2-8 years old, and no later than 12 years old. The technique utilizes child-specific reinforcers to motivate and reward success. Additionally, the use of language and imitation are crucial for the teaching model.

The Early Start Denver Model is an early intervention program designed for infants, toddlers, and preschoolers ages 12-48 months with autism. Developed by Geraldine Dawson, Ph.D., and Sally Rogers, Ph.D., it is the only experimentally verified early-intervention program designed for children with autism as young as 18 months old. ESDM applies the principles of ABA to an early-intervention program. Similar to Pivotal Response Training, interventions are delivered within play-based, relationship-focused routines.

Other therapies that can be part of a complete treatment program for a child with an ASD include:

Developmental, Individual Differences, Relationship-Based Approach (DIR; also called “Floortime”)

Floortime focuses on emotional and relational development (feelings, relationships with caregivers). It also focuses on how the child deals with sights, sounds, and smells.

Relationship Development Intervention® (RDI)

RDI is a family-based, behavioral treatment designed to address autism’s core symptoms. Developed by psychologist Steven Gutstein, Ph.D., it builds on the theory that “dynamic intelligence” is key to improving quality of life for individuals with autism. Dr. Gutstein defines dynamic intelligence as the ability to think flexibly. This includes appreciating different perspectives, coping with change and integrating information from multiple sources (e.g. sights and sounds).

Treatment and Education of Autistic and related Communication-handicapped CHildren (TEACCH)

TEAACH uses visual cues to teach skills. For example, picture cards can help teach a child how to get dressed by breaking information down into small steps.

Occupational Therapy

Occupational therapy is often used as a treatment for the sensory integration issues associated with ASDs. It is also used to help teach life skills that involve fine-motor movements, such as dressing, using utensils, cutting with scissors, and writing. OT works to improve the individual’s quality of life and ability to participate fully in daily activities.

Physical Therapy

Physical therapy is used to improve gross motor skills and handle sensory integration issues, particularly those involving the individual’s ability to feel and be aware of his body in space. Similar to OT, physical therapy is used to improve the individual’s ability to participate in everyday activities. PT works to teach and improve skills such as walking, sitting, coordination, and balance.

Sensory Integration Therapy

Sensory integration therapy helps the person deal with sensory information, like sights, sounds, and smells. Sensory integration therapy could help a child who is bothered by certain sounds or does not like to be touched.

Speech Therapy

Speech therapy helps to improve the person’s communication skills. Some people are able to learn verbal communication skills. For others, using gestures or picture boards is more realistic.

The Picture Exchange Communication System (PECS)

PECS uses picture symbols to teach communication skills. The person is taught to use picture symbols to ask and answer questions and have a conversation.

Restructuring Oral Muscular Phonetic Targets (PROMPT)

This is a multidimensional approach to speech production disorders has come to embrace not only the well-known physical-sensory aspects of motor performance, but also its cognitive-linguistic and social-emotional aspects. PROMPT is about integrating all domains and systems towards positive communication outcome. It may be used (with varying intensity and focus) with all speech production disorders from approximately 6 months of age onward. To achieve the best outcome with PROMPT it should not be thought of or used mainly to facilitate oral-motor skills, produce individual sounds/phonemes or as an articulation program but rather as a program to develop motor skill in the development of language for interaction.

Medication

There are no medications that can cure ASD or even treat the main symptoms. Pharmaceutical treatments can help ameliorate some of the behavioral symptoms of ASD, including irritability, aggression, self-injurious behavior, manage high energy levels, inability to focus, depression, or seizures. Additionally, by medically reducing interfering or disruptive behaviors, other treatments, including ABA, may be more effective. Medications should be prescribed and monitored by a qualified physician.

 References:
Autism Science Foundation
Autism Speaks
Center for Disease Control and Prevention (CDC)

Let’s talk about Autism

As soon as I realized there was a possibility of my son having autism I started looking for information everywhere I could. Most of what I knew about this disorder was based on what I saw in movies, and most of what they showed about it didn’t seem to fit in what I saw in my little boy, so how I was supposed to accept such a diagnosis?

I think one of the reasons people are so scared of this disorder is the fact they know nothing about it. All we know is what we see on TV and that is not even 1% of what ASD is. I was determined to learn more. I had to understand how my son was put in this “spectrum” and for our sake I needed to get more information. I called everyone I could think of that I knew who had some knowledge about it. I called people in Brazil, I sent messages to great doctors I am blessed to know and e-mails to people I have never seen in my life. To my relief almost everyone I contacted was willing to help in some way. If you are a desperate mom you go above and beyond to find help for you child. And at that time information was the help I needed most. I have no idea how many hours I spent (and still spend) on the computer searching. Thankfully there is a lot of serious websites about the subject and I was able to learn quite a bite about it in a relatively short amount of time.

Since this blog is not only about our story, but also an attempt to help raise awareness and knowledge about autism I will share with you everything I find about the topic. So let’s start learning more about this complex disorder that is now part of my family’s life and may be closer to you than you think.

First of all, we need to know what this so called disorder is all about.

Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders. ASD is characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. The symptoms are present from early childhood and affect daily functioning. Even though autism appears to have its roots in very early brain development, the most obvious signs and symptoms of autism tend to emerge between 2 and 3 years of age.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art. Symptoms can range from mild to severe and vary with each individual. For instance, some children may rarely use words to communicate, while others may hold extensive conversations and use rich language. Some children may not like to be hugged or touched, while others seek out and enjoy physical touch.

There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people.

ASD occurs in every racial and ethnic group, and across all socioeconomic levels. The latest analysis from the Centers for Disease Control and Prevention estimates that 1 in 68 children have ASD. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States. ASD affects over 3 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.

What causes ASD?

Though ASD research has advanced significantly in the past decade, it is still not known exactly what causes the disorder. It’s likely that there are multiple causes, and thus multiple “autisms.” First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Scientists believe that both genetics and environment likely play a role in ASD. There is great concern that rates of autism have been increasing in recent decades without full explanation as to why. Researchers have identified a number of genes associated with the disorder. Imaging studies of people with ASD have found differences in the development of several regions of the brain. Studies suggest that ASD could be a result of disruptions in normal brain growth very early in development. These disruptions may be the result of defects in genes that control brain development and regulate how brain cells communicate with each other. Autism is more common in children born prematurely. Environmental factors may also play a role in gene function and development, but no specific environmental causes have yet been identified. We do know that ASD is not caused by psychological factors, parenting behaviors or practices, or vaccines.

What role do genes play?

Twin and family studies strongly suggest that some people have a genetic predisposition to autism. Identical twin studies show that if one twin is affected, then the other will be affected between 36 to 95 percent of the time. There are a number of studies in progress to determine the specific genetic factors associated with the development of ASD. In families with one child with ASD, the risk of having a second child with the disorder also increases. Many of the genes found to be associated with autism are involved in the function of the chemical connections between brain neurons (synapses). Researchers are looking for clues about which genes contribute to increased susceptibility. In some cases, parents and other relatives of a child with ASD show mild impairments in social communication skills or engage in repetitive behaviors. Evidence also suggests that emotional disorders such as bipolar disorder and schizophrenia occur more frequently than average in the families of people with ASD.

In addition to genetic variations that are inherited and are present in nearly all of a person’s cells, recent research has also shown that de novo, or spontaneous, gene mutations can influence the risk of developing autism spectrum disorder. De novo mutations are changes in sequences of deoxyribonucleic acid or DNA, the hereditary material in humans, which can occur spontaneously in a parent’s sperm or egg cell or during fertilization. The mutation then occurs in each cell as the fertilized egg divides. These mutations may affect single genes or they may be changes called copy number variations, in which stretches of DNA containing multiple genes are deleted or duplicated. Recent studies have shown that people with ASD tend to have more copy number de novo gene mutations than those without the disorder, suggesting that for some the risk of developing ASD is not the result of mutations in individual genes but rather spontaneous coding mutations across many genes. De novo mutations may explain genetic disorders in which an affected child has the mutation in each cell but the parents do not and there is no family pattern to the disorder. Autism risk also increases in children born to older parents. There is still much research to be done to determine the potential role of environmental factors on spontaneous mutations and how that influences ASD risk.

What Does It Mean to Be “On the Spectrum”?

The term “spectrum” refers to the wide range of symptoms, skills, and levels of disability in functioning that can occur in people with ASD. Some children and adults with ASD are fully able to perform all activities of daily living while others require substantial support to perform basic activities. With the May 2013 publication of the DSM-5 diagnostic manual all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disabilities and are unable to live independently. About one third of people with ASD are nonverbal, but can learn to communicate using other means.

References
Centers for Disease Control and Prevention
Autism Speaks 
National Institute of Neurological Disorders and Stroke (NINDS)
Autism Science Foundation
The Children’s Hospital of Philadelphia 
National Institute of Mental Health (NIMH)

Image Source: Gratiosgraphy

Ready or not, here we go!

As a birthday present I got a phone call from Becca telling us our next appointment had been scheduled. I was so happy! We were finally going to see a neuropediatrician. Nothing against the other professionals that had assessed Guto until this point, but since autism is a neurologic disorder, it just made sense to me that to have a accurate diagnosis he needed to be evaluated by a neurologist.

On May 12th we meet with Dr. Scott, MD. We can’t say enough how much we really liked her. She not only honestly answered all the questions we had, but she was so patient. We spent close to 3 hours with her.

Dr. Scott was able to change to July the multidisciplinary evaluation appointment that Becca had originally scheduled for September, which worked out great since we are going to Brazil for a month and the appointment will be a week after we return. She said she could not give any definite answers to us, as far as a diagnosis, until we had an evaluation with a speech therapist and a psychologist. She talked to us about treatments and programs we could start looking into just to get more informed. Some of them only would work if we got a formal diagnosis, which is why, she said, it is important to close the diagnosis as soon as possible.

After all this, that is no doubt in my heart about his diagnosis. I was already very certain, but we always have that piece of hope in us that wishes that someone will see something you are not seeing and tell you that you are wrong. I think it is kind of funny how some doctors don’t want to worry you saying “we are not diagnosing him yet” but deep down you know they already know the answer, and so do we.

One thing she said that stuck in our minds was along the lines “Are you ready to embark on a challenging and complicated journey raising an autistic child?”

The unknown is always scary, but we know we won’t be alone. So…

Ready or not, here we go!

Unsplash - hands_Fotor

Image Souce: Unsplash