Autism

How we can help you

We specialize 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 need to be addressed.

Autisim

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.

The most common questions

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 Find Neuro Help 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 from the Greek word “autos” which means self. Autism and autism spectrum disorder (ASD) are both general terms for a variety of diagnoses: 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.^[^1]

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 in girls. Its prevalence is not affected by race, region, or socioeconomic 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.^[^2]

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.^[^3]

The Numbers

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 ^[^4]

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 the 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 that 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 another medical testing.

In some cases, the primary care doctor might choose to refer to 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 use 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 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.^[6]

Impact on U.S. economy

In 2016, the costs are projected to be $236 billion.^[^36] By 2050, these costs are projected to jump to more than $1 trillion (in 2016 dollars) annually.^[^36]

Impact on U.S. families

A recent survey by Alzheimer’s Association found that many families have to cut back on basic necessities such as food and medical care for themselves and their families because of the high cost of caring for a loved one with Alzheimer’s. The survey found that 28% are more likely than other adults to eat less or go hungry because they cannot afford to pay for food.

Symptoms

Alzheimer’s symptoms develop slowly in the beginning. As the individual ages, the symptoms increase exponentially. The most common early symptom is difficulty in remembering recent events (short-term memory loss).^[^1]The progression eventually becomes severe enough to impact daily tasks. Individuals with Alzheimer’s typically experience problems with language, disorientation (including easily getting lost), mood swings, loss of motivation, not managing self-care, and behavioral issues.^[^{1], [2]} A sense of apathy and depression are common symptoms that manifest themselves in the early onset of the disease. As a person’s condition declines, they often withdraw from family and society.^[^1] Gradually, bodily functions are lost, ultimately leading to death.^[^12] Although the speed of progression can vary, the average life expectancy following diagnosis is three to nine years.^[^{13], [14]}Mature symptoms of the disease include; impaired communication, disorientation, poor judgment, confusion, behavioral changes, and eventually body functions such as difficulty in speaking, swallowing, and walking.

Below is a list of the most common symptoms:

Cognitive

Alzheimer’s symptoms usually begin to appear after age 60 and the risk of getting the disease increases with age. Initial symptoms are often mistaken for normal aging.^[^1] Examination of brain tissue is needed for a definite diagnosis.^[^3]
Mental decline, difficulty thinking, and understanding
Confusion in the evening hours
Delusion
Disorientation
Forgetfulness
Making things up
Difficulty concentration
Inability to create new memories
Inability to do simple math
Inability to recognize common things

Behavioral

Mood

Anger
Apathy
General discontent
Loneliness
Mood swings

Psychological

Depression
Hallucinations
Paranoia

Whole Body

Loss of appetite or restlessness

Current treatment methods

No treatments stop or reverse its progression, though some may temporarily improve symptoms.^[^2] Affected people increasingly rely on others for assistance, often placing a burden on the caregiver; the pressures can include social, psychological, physical, and economic elements.^[^16] Exercise programs are beneficial with respect to activities of daily living and can potentially improve outcomes.¹⁷ Treatment of behavioral problems or psychosis due to dementia with antipsychotics is common but not usually recommended due to there often being a little benefit and an increased risk of early death.^[^{18], [19]}

Medications

While there is no cure, prevention, or treatment to stop Alzheimer’s progression, there are five prescription medications approved by the U.S. Food and Drug Administration (FDA) to treat its symptoms. Research shows these medications work 50 percent of the time for people who take these medications for up to two years.

Donepezil (Aricept)

This medication is used to treat all stages of Alzheimer’s. It can improve the cognition and behavior of people with Alzheimer’s. Donepezil binds and inactivates reversibly cholinesterase, inhibiting the hydrolysis of acetylcholine. The result is an increased acetylcholine concentration at cholinergic synapses.

The precise role that Donepezil plays in patients with Alzheimer’s is unsure, it has shown positive effects in the area of the cerebral cortex. The severity of the loss of cholinergic neurons in the central nervous system (CNS) correlates directly with the severity of cognitive impairment. Side effects of the medication include loss of appetite, gastrointestinal upset, diarrhea, difficulty sleeping, vomiting, or muscle cramping.

Galantamine (Razadyne)

This medication is used for mild to moderate symptoms. An alkaloid obtained synthetically from bulbs and flowers of the Galanthus caucasicus species. Galantamine has been used for several decades in Eastern Europe and Russia for the treatment of myasthenia, myopathy, and sensory/motor dysfunction associated with disorders of the central nervous system. Its use in the United States is FDA approved for Alzheimer’s treatment.

Galantamine increases concentration and action of acetylcholine in certain parts of the brain.

Rivastigmine (Exelon)

A medication used for mild to moderate symptoms of Alzheimer’s is a Para sympathomimetic or cholinergic agent used to treat mild to moderate dementia in Alzheimer’s and Parkinson’s Disease. Administered orally and by transdermal patch. Rivastigmine has shown a meaningful reduction in Alzheimer’s symptomatic effects.

This medication has helped patients remain independent and more like their true selves for longer periods of time. In particular, it shows marked improvement in patients showing a more aggressive progression such as those with younger-onset ages, poor nutrition, or those experiencing symptoms such as delusions or hallucinations

Memantine (Namenda)

A medication most often used for moderate to severe Alzheimer’s. Memantine acts on the glutamatergic system by blocking NMDA receptors. It was first synthesized by Eli Lilly and Company in 1968 as a potential agent to treat diabetes; the NMDA activity was discovered in the 1980s.

Memantine is used with individuals who are intolerant to ACHE acetylcholinesterase (a chemical or a drug that inhibits the acetylcholinesterase enzyme from breaking down acetylcholine, thereby increasing the level and duration of action of the neurotransmitter acetylcholine).

Memantine & Donepezil (Namzaric)

A combination medication comprised of meantime hydrochloride extended-release, an NMDA receptor antagonist, and donepezil hydrochloride, an acetylcholinesterase inhibitor.

Namzaric improves mental function by decreasing abnormal activity in the brain and by increasing the amount of a certain naturally occurring substance in the brain.

Namzaric comes as a capsule to be taken by mouth, once daily. The capsules can be opened to allow the contents to be sprinkled on food for patients who have difficulty swallowing. Common side effects include headache, diarrhea, and dizziness.

Specialties typically needed to treat Alzheimer’s Disease

Occupational therapist
Geriatrician
Neurologist
Psychiatrist

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.^[^7]

Sources of further information and research