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Social organizations and Autism

By Kiersten Miller

Many private organizations have goals to spread autism awareness and provide helpful programs for families affected by this brain disorder. One of these organizations is the Association for Science in Autism Treatment (ASAT) which was founded in 1998 to teach medical professionals and parents of children with autism about the best treatments available. They back up all their advice with scientific results, and they do not promote treatment options that are popular in the media that have no scientific research available.

When autism was first discovered in the 1940s, the media had produced numerous stories about “magical breakthroughs” which have no scientific basis to support them. This foundation’s goal is to eliminate the false theories about treatments available and how to prevent autism. The Autism Consortium is a foundation that brings families with autistic children together in a community where they feel like they are not alone. They also focus on other neurological disorders like Aspergers and help those families in the same way.  The Autism Research Institute (ARI) was founded in 1967 by Dr. Bernard Rimland in order to further research and to find new treatments. Some theories of autism development say that the disease is untreatable and develops entirely from genetics. The ARI believes there is treatment that can improve the lives of many people with autism. The Autism Society of America (ASA) is one of the biggest organizations in the United States. Every year they hold a national conference on autism awareness. This organization is unique in that on the current board of directors there are a few members that are on the autism spectrum. Autistica is the largest organization in the United Kingdom that obtains funds for medical research. Their research is focused on diagnosis, advancing treatments and discovering the causes of autism.

Autism is more frequently misdiagnosed or diagnosed late in African American children because of the lack of clinics available and their infrequent doctor visits. The Color of Autism Foundation has a mission to support these families, because they seem to be forgotten. This organization is trying to help these families understand their options and also to spread the word about early diagnosis and the warning signs to look for. The Daniel Jordan Fiddle Foundation was established in 2002 to help adults living with autism. They give grants to these adults on the spectrum to make living alone more achievable. They provide information and therapists that can help these adults lead more fulfilling lives.  First Signs is another organization that advocates for early diagnosis and intervention in children. They have therapists that provide families with guides on healthy development and behavioral help. Other organizations like the National Autism Association, created in 2003, are parent-led, which makes the care more personal. The people sponsoring the therapy and the association are dealing with the same issues. The goal is then focused more on the individual families rather than trying to make the foundation more successful through expensive research.

Over the years since the discovery of autism the awareness of this disease has increased many times over due to organizations like these and many others that were not mentioned. Most of the population has some general knowledge about autism, as a result of these organizations having missions to spread the truth about this disease and advocate for early diagnosis. Organizations have setbacks due to the fact that false media reports like the one blaming vaccines for autism have been widely broadcasted. This theory was disproven in 2011, but these organizations are still fighting to inform everyone that vaccines are safe and are needed to keep populations healthy. Other false claims like the correlation between organic foods and autism have also been disproven and in turn changed the way people think about autism. Many people who believed these false statements blamed the parents for giving their child vaccines and organic foods. Many organizations have set out to help parents better understand why people have the prejudices they do and how to cope with these biases. Other challenges associations face is that autism research is still very young. There have been many breakthrough studies about why these children act the way they do and effective treatments, but little is known about the true cause. Many people in the early 2000s believed the vaccine myth previously explained and have not believed the new reports discrediting this theory.

There has been much research on how genetics play a role in development and also outside environmental elements that can cause this disorder. Because of the amount of organizations doing many of the same programs for children and families with autism, the money does not get distributed equally. The bigger organizations receive more funding because they are more well-known which causes problems for the smaller organizations trying to help the communities they are in. The research done in the larger organizations is possible because of their extra funding making the smaller companies unable to keep up with the latest scientific methods. When a large organization has a breakthrough find, the money they receive for more research increases, and it then takes away from the smaller organizations. This cycle is ongoing and does not allow for smaller organizations to thrive as well as established organizations. Furthermore, autism is a challenging disease to work with because of the wide range of severity between patients. Each patient has to be individualized due to their behavior and how they interact socially. This takes many professionals and their insight on the best treatment options for each individual type of patient. People have started organizations for the benefit of others with full knowledge of the adversity ahead, because they are driven by their passion to help families coping with autistic children.

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