How FINDcures Can Help
FINDcures specializes in providing help in areas that other foundations often miss or leave unaddressed. When a family member is diagnosed with Autism, a cascade of questions and concerns materialize that can easily overwhelm a family. Most often the patient is a child and the issues of on-going therapy for the child and parental education on how to be an effective caregiver will be need to be addressed.
Beyond the issues of therapy and parental caregiving there are other adjustments that need to be considered. Specific concerns, that most often arise in a progression of unanswered questions, can have an overwhelming impact on a family’s sense of security and self-worth. FINDcures has developed a service model (shown at right) called the “Perimeter of Hope” which is designed to provide solutions and answers to the myriad questions that arise when a neurological diagnosis occurs.
The most common questions that come up are these:
- Why is this happening? What caused this? How difficult is this going to be? How will this impact my child and my family? How do I deal with all of the emotions I’m feeling? (Mental Health & Well-Being Services)
- How will I be able to provide for my child in the future? (Financial Planning & Retirement Services)
- How can I protect my assets so that they will be available as a resource for my family and my child when I’m unable to do so or when I die? (Legal Assistance & Estate Planning Services)
- If our family needs to relocate to receive better care for my child or to reduce expenses who can I turn to for help? (Housing, Relocation & Real Estate Services)
- Will I be able to help with my child’s education expenses in the future? (Education Planning & Tuition Assistance)
- When will they find a cure? What health steps can I take to help my child in the meantime? (Medical Research & Information Services)
When an impacted individual or family is faced with making these decisions on their own and without help from qualified individuals familiar with the impact of neurological diseases, the task list can be overwhelming. Why make things more difficult by going it alone when you can contact an experienced FINDcures representative and allow them to assist you? Our services are free of charge. The consultation costs you nothing and should you choose a service we offer, the cost, if any, is subsidized by the donations we receive.
Austism – An Overview
The word Autism comes for the Greek word “autos” which means self. Autism and autism spectrum disorder (ASD) are both general terms for a variety of diagnosis: They include autistic disorder (sometimes referred to as “classic autism”), Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger’s syndrome.
- Autism is a bio-neurological developmental disability that generally appears before the age of three
- Autism impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities
- Individuals with autism often suffer from numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more
- ASD is diagnosed four times more often in boys than girls. Its prevalence is not affected by race, region, or socio-economic status. Since autism was first diagnosed in the U.S. the incidence has climbed to an alarming one in 68 children in the U.S.
- Autism itself does not affect life expectancy; however research has shown that the mortality risk among individuals with autism is twice as high as the general population, in large part due to drowning and other accidents.
- Currently there is no cure for autism, though with early intervention and treatment[a], the diverse symptoms related to autism can be greatly improved and in some cases completely overcome.
History of Autism
Eugen Bleuler, a Swiss psychiatrist,[b] was the first person to use the term Autism around 1911. In the 1940s, researchers in the United States began to use the term autistic to describe children with emotional or social problems. Leo Kanner, a doctor from Johns Hopkins University, used it to describe the withdrawn behavior of several children he studied. At about the same time, Hans Asperger, a scientist in Germany, identified a similar condition that’s now called Asperger’s syndrome.
- Autism now affects 1 in 68 children
- Boys are four times more likely to have autism than girls
- About 40% of children with autism do not speak. About 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood
- ASD greatly varies from person to person (no two people with autism are alike)
- The rate of autism has steadily grown over the last twenty years
- Autism is the fastest growing developmental disorder, yet most underfunded
- A 2008 Danish Study found that the mortality risk among those with ASD was nearly twice that of the general population
- Children with autism do progress – early intervention is key
- ASD is treatable, not a hopeless condition 
Symptoms and diagnosis
Some of the child-hood symptoms of ASD are:
- No big smiles or other warm, joyful expressions by six months or thereafter
- No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
- No babbling by 12 months
- No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
- No words by 16 months
- No meaningful, two-word phrases (not including imitating or repeating) by 24 months
Diagnosing ASD can be difficult, since there is no medical test – like a blood test – to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis. ASD can sometimes be detected at 18 months or younger. However, many children do not receive a final diagnosis until much older.
General diagnosing of ASD takes two steps:
- Developmental Screening is a short test to tell if children are learning basic skills when they should, or if they might have delays. During developmental screening the doctor might ask the parent some questions or talk and play with the child during an exam to see how she learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.
- Comprehensive Diagnostic Evaluation is a thorough review which may include looking at the child’s behavior and development and interviewing the parents. It may also include a hearing and vision screening, genetic testing, neurological testing, and other medical testing.
In some cases, the primary care doctor might choose to refer the child and family to a specialist for further assessment and diagnosis. Specialists who can do this type of evaluation include:
- Developmental Pediatricians (doctors who are specially trained in child development and with special needs)
- Child Neurologists (doctors who work on the brain, spine, and nerves)
- Child Psychologists or Psychiatrists (doctors who know about the human mind)5
Current Treatment methods
Symptoms and behaviors of autism can combine in many ways and vary in severity. Also, individual symptoms and behaviors often change over time. For these reasons, treatment strategies are tailored to individual needs and available family resources. But in general children with autism respond best to highly structured and specialized treatment. A program that addresses helping parents and improving communication, social, behavioral, adaptive, and learning aspects of a child’s life will be most successful.
A list of some strategies for helping a child to improve overall function and reach their potential:
- Behavioral training and management uses positive reinforcement, self-help, and social skills training to improve behavior and communication. Many types of treatments have been developed, including Applied Behavioral Analysis (ABA), Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), and sensory integration.
- Specialized therapies that include speech, occupational, and physical therapy. These therapies are important components of managing autism and should all be included in various aspects of the child’s treatment program. Speech therapy can help a child with autism improve language and social skills to communicate more effectively. Occupational and physical therapy can help improve any deficiencies in coordination and motor skills. Occupational therapy may also help a child with autism to learn to process information from the senses (sight, sound, hearing, touch, and smell) in more manageable ways.
- Medicines are most commonly used to treat related conditions and problem behaviors, including depression, anxiety, hyperactivity, and obsessive-compulsive behaviors.
- Community support and parent training. Talk to your doctor or contact an advocacy group for support and training.
Life style impact and challenges
A child’s autism diagnosis affects every member of the family in different ways. Parents/caregivers must now place their primary focus on helping their child with ASD, which may put stress on their marriage, other children, work, finances, and personal relationships and responsibilities. Parents now have to shift much of their resources of time and money towards providing treatment and interventions for their child, to the exclusion of other priorities. The needs of a child with ASD complicates familial relationships, especially with siblings. However, parents can help their family by informing their other children about ASD and the complications it introduces, understanding the challenges siblings face and helping them cope, and involving members of the extended family to create a network of help and understanding.
Sources of further information and research
- Centers for Disease Control and Prevention http://www.cdc.gov/
- Drake Institute http://www.drakeinstitute.com/
- Autism Speaks https://www.autismspeaks.org/
- Autism Society http://www.autism-society.org/
- Centers for Disease Control and Prevention http://www.cdc.gov/ncbddd/autism/index.html
- National Autism Association http://nationalautismassociation.org/
- Age of Autism http://www.ageofautism.com/
1 Autism Speaks https://www.autismspeaks.org/whatautism
2 National Autism Association http://nationalautismassociation.org
4 National Autism Association http://nationalautismassociation.org
5 Centers for Disease Control and Prevention http://www.cdc.gov/ncbddd/autism/screening.html
7 Understanding Autism for Dummies, 2006