Autism Action Partnership

About Autism

FAQs

How prevalent is autism?

  • Autism is diagnosed in 1 in every 68, including 1 in every 42 boys and 1 in every 189 girls (CDC, 2014).
  • 1 percent of the world population has autism spectrum disorder (CDC, 2014).
  • Every 20 minutes, a child is diagnosed with autism.
  • Autism is more prevalent than juvenile diabetes, pediatric AIDS, leukemia, and muscular dystrophy combined.

 

What causes autism?

There is no known cause or cure for autism and the disorder may not result from a single issue, trigger, or developmental explanation. Researchers may not know the exact cause of autism but are investigating a number of theories, including the links among heredity, genetics, environmental issues, and medical problems. To date, the American Academy of Pediatrics, the CDC, the World Health Organization, and the Institute of Medicine all agree that there's probably no relationship between autism and vaccines, though they continue to do research into this concern.

 

Is ASD more common now than it was in the past?

Every year more people are receiving diagnoses than ever before, but it is not clear why. Some speculate that the increase in the number of diagnoses is due to awareness and a broader definition of autism spectrum disorder. Yet, researchers have not ruled out the possibility that there has been an actual increase in the number of individuals with autism within the population. (NIH, 2015)

 

Are there certain individuals that have a higher likely hood of receiving a diagnosis of autism?

  • Males are 5 times more likely to be on the spectrum than girls.
  • “Siblings of those with ASD. Among families that have one child with autism, there is a 2 % to 8 % chance that another sibling will have autism.   This is much higher than in the general population. The chance is even greater if two older children in the family have autism.” (NIH, 2015)
  • Those with tuberous sclerosis or Fragile X syndrome may be more likely to be on the spectrum.
  • Babies who are born earlier than 26 weeks into pregnancy (NIH, 2015).

 

How is autism diagnosed?

Autism is not diagnosed by a single medical test or a brief observation. The individual’s set of behaviors should be thoroughly observed and related to the DSM-V, the Diagnostic and Statistical Manual of Mental Disorders. This process requires a subjective, comprehensive evaluation by a professional.

The DSM-V criteria for a diagnosis of autism spectrum disorder can be found on the website for the CDC.

 

How is autism treated?

The American Academy of Pediatrics, the Surgeon General, and the National Council on Education all state that early, intensive behavior therapy is the most researched and proven method of treating the symptoms experienced by children on the autism spectrum.

Educational and behavioral therapies have been proven to be successful with many children and adults who are on the spectrum. In a highly structure environment, individuals are taught skills in the areas of social interactions and communication.

Occupational and physical therapies have also been proven to help individuals build their fine and gross motor skills, which allows individuals to interact more fully with their environment as well as to develop critical self-help skills to increase independence.

In addition to these therapies, many individuals, siblings, and families have found that counseling can be very helpful for navigating the world with a diagnosis of autism. Counseling may help individuals and families cope with the changes associated with receiving a diagnosis as well as managing what this means for the future.

Though not a cure for autism or its symptoms, medication is an option for individuals seeking to help manage related symptoms. If therapies are not able to help an individual manage anxiety, obsessive-compulsive disorder, or depression, medication may help. Related issues such as seizure disorders can be treated quite effectively with medication. Individuals, parents, and caregivers should fully investigate any medication options before adopting them. Medication is a choice that no one should feel forced into. Always ask questions, get second opinions, and do the research. It is your right! In addition, individuals should use caution before adopting any unproven treatments or therapies.

Therapies that can help improve symptoms or related issues can be found on the interventions page of our website.

 

What does “on the spectrum” mean?

Autism is called a spectrum disorder because no one on the spectrum is exactly like any other. Autism effects each person uniquely. Some individuals interact fairly well with others, but experience much anxiety about doing so. They may have a high intelligence, be highly skilled in a certain area, and be able to maintain full career employment. Some individuals may be hesitant to interact with peers, a mild intellectual disability and thus utilize special education services while in school, and may seek part time employment after graduating from a young adult program. Other individuals may experience symptoms that have a greater impact on their life. They may not use their voice to speak, they may have regimented sensory diets, and may enjoy spending their time at home or in a recreational programs as an adult.   Everyone’s symptoms of autism are different.

Being on the autism spectrum means that you have an autism diagnosis, but that you are an individual. Autism impacts each person uniquely and everyone relates differently to their autism.

 

What is the prognosis?

Every parent wants to know if their child will get better, if they will attend school, or have friends. No doctor, specialist, therapist, or teacher can chart the path your child will take. Though we all wish we could peer into the future to see how your child develops, it is just not possible to know.

What you can do is to focus on how you can help your child today, tomorrow, and how you can plan for what is to come. Therapies and other treatments have come a long way and can provide great benefit to individuals on the spectrum. Have hope. Give love. Keep advocating for the best for your child. Your optimism, dedication, and advocacy will be more effective for your child than any professional’s prognosis.

 

What is the cost of raising a child with autism?

Many individuals and families take advantage of services provided by the state and national government to help pay for necessary services. Many individuals are eligible to receive Medicaid and Supplemental Social Security Income. Also, individuals may contact their state’s Department of Developmental Disabilities to seek eligibility for funding for services such as respite, community living supports, day services, and vocational training.

Nebraska DHHS

  • The annual cost of autism therapies and treatments can exceed $40,000 to $60,000 per year.
  • The lifetime cost to support an individual with autism is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability. (Buescher et al., 2014)
  • The majority of autism treatment options are not covered by insurance. In the State of Nebraska Applied Behavior Analysis (ABA) is now covered by many insurers. If it not, advocate for the coverage from your employer. Learn more
  • Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention. (Autism. 2007 Sep;11(5):453-63; The economic consequences of autistic spectrum disorder among children in a Swedish municipality. Järbrink K1.)

 

How does autism affect families?

Learning about a diagnosis of autism usually brings many changes to a home and to the family within. Each person in the individual’s life will be affected differently. Parents must begin to understand the impact of the diagnosis and what step will be taken next. Often stress is a substantial issue for parents and caregivers seeking to build therapy regiments, provide a loving home, to possibly balance work, a marriage, and the needs of other children. Attention is focused on understanding the wants and needs of the individual, to have them try new foods, tolerate the weather, or to help cope with frustrations. Often this shift in focus can cause strains in a marriage, with other children, and on financial resources. It can be physically exhausting, emotionally draining, and at time isolating for families. We always encourage parents and caregivers to try to find time to decompress and take care of themselves so they are able to continue being amazing and relentless advocates, therapists, and experts on their child. Families can create a network of supportive family members and friends who can provide support, understanding, respite, and friendship.

Siblings of individuals on the autism spectrum have their own perspective on life with their brother or sister. Siblings of individuals on the spectrum often grow to be mature beyond their years and to have a deep understanding of Parents must also consider how life may change for their neurotypical children and create a supportive family life for them as well. Search your local area for support groups where siblings can gather, share experiences and build friendships with others in similar families. Click here for information on supporting sibling of individuals who are on the spectrum

Click here to watch a video about the experiences of a young man who has a brother on autism spectrum.

One of the greatest fears of parents of a child with autism is “who will care for my child/family member when I am gone?” Proactive transition and long-term financial planning can help alleviate some of the worries.

Advice From Siblings of Special-Needs Kids - Their tips on how to minimize stress and make sure all the kids' needs are met

Families are often the greatest source of therapy and support an individual may have in their life. By continuing therapy into the home and advocating for your family member, you can make an incredible impact in the life of your loved one.  

 

Are there other disorders or conditions I should watch for?

Comorbid conditions often associated with autism include Fragile X, allergies, asthma, epilepsy, bowel disease, gastrointestinal/digestive disorders, persistent viral infections, PANDAS, feeding disorders, anxiety disorder, bipolar disorder, ADHD, Tourette Syndrome, OCD, sensory integration dysfunction, sleeping disorders, immune disorders, autoimmune disorders, and neuroinflammation.

 

What if I think I have autism?

Many adults have lived their life not knowing they are on the spectrum. An adult may notice that they show the signs of autism in their personal and professional lives and may choose to seek out a professional to assist them in determining whether or not a diagnosis is fitting or necessary. Individuals that can help with this process are licensed clinical psychologists, neurologists, and psychiatrists.

 

Does autism change as individuals get older?

Many individuals experience a reduction in symptoms as they age and they are better able to manage. During typical growth, puberty, and young adulthood an individual’s body changes. Therapies and medications may have to be adapted to an individual’s growing body in order to remain effective in reducing symptoms. In addition, during adolescence in particular, some individuals on the spectrum experience a change in behavior or may begin to exhibit signs of anxiety or depression. Seek information and assistance from a professional if you notice changes that seem out of the ordinary for the individual.

After high school, many individuals continue on through a young adult program so they can receive services through the age of 21 from the public school system. Some individuals graduate from high school or a young adult program and continue on to college or trade school.

Please refer to our reference page for individuals 18 or older for more information

After school, many individuals will seek employment. Though many individuals are capable of working, they may not have found an effective support system to help them be successful in the work environment.

  • 35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school. (Shattuck et al., 2012)
  • Some estimates indicate that the rate of underemployment among adults with autism exceeds 90%.

 

Job coaches, mentors, job training programs, and individually hired assistants can help an individual find success in the world of work. At Autism Action Partnership, we fund a program called PACE, the Partnership for Autism Career Employment. At PACE we help adults on the spectrum find and maintain employment within the community. Please click here to find out more information about how PACE can help an individual reach their career goals.

 

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  • Omaha, NE 68114
  • 402-763-8830 (Office)
  • 1-877-273-2271 (Resource Line)
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