Tag: autism

The Myth of an Autism Epidemic

We hear stories about the rise in autism and the autism epidemic all of the time.

Autism prevalence rates have been steady at 1 in 68 since 2010.
Autism prevalence rates have been steady at 1 in 68 since 2010.

Every few years, the CDC had been releasing a new report which showed a higher prevalence of autism in the United States, including:

  • 1 in 150 children in 2000
  • 1 in 150 children in 2002
  • 1 in 125 children in 2004
  • 1 in 110 children in 2006
  • 1 in 88 children in 2008
  • 1 in 68 children in 2010
  • 1 in 68 children in 2012

Looking at those numbers, it is easy to see most people think that the rate of autism is rising.

And if the rate of autism is rising, then there must be a cause.

Thinking about it like that, it becomes easy to see why vaccines became the scapegoat for causing autism, especially after Andrew Wakefield told everyone that it “is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR…”

The Myth of an Autism Epidemic

Many experts don’t think that there is an autism epidemic though.

“…the numbers of people born with autism aren’t necessarily increasing dramatically. It’s just that we’re getting better and better at counting them.”

Emily Willingham

There are several different explanations for the apparent rise in the number of children being diagnosed with autism, including:

  • better recognition among health care providers
  • better recognition among parents
  • diagnostic substitution – children were once diagnosed with other conditions, such as mental retardation and learning disabilities
  • broadening of the criteria used to diagnose autism, including changes in DSM criteria, which went from labeling children with autism as having childhood schizophrenia (1952) and including just three essential features of infantile autism (1980) to adding PDD-NOS (1987) and more subtypes and symptoms to the autism diagnosis category in DSM-IV (1994).
  • social influences, including that more parents may have wanted to seek help when more resources become available and because they may have become more accepting of the possibility that their child had autism, leading them to seek a diagnosis and services. For example, before 1975 and the Education for All Handicapped Children Act, children with disabilities were excluded from school. And then in 1990, the Individuals with Disabilities Education Act (IDEA) included autism as a separate disability, making it a little easier to get services.

All together, these explanations help explain what has been confirmed by numerous studies, that the true prevalence of autism hasn’t changed over time.

What To Know About The Autism Epidemic Myth

There is no autism epidemic.

  • There are adults and older people with autism. Did you know that the the first meeting of the National Society of Autistic Children was held in 1965?
  • The idea that the ‘autism epidemic’ is a myth is not new – experts have been talking about it for over 10 years, which makes you wonder why some people still push the idea. An idea that hurts autistic families.
  • A 2015 study concluded that “Changes in reporting practices can account for most (60%) of the increase in the observed prevalence of ASDs in children born from 1980 through 1991 in Denmark. Hence, the study supports the argument that the apparent increase in ASDs in recent years is in large part attributable to changes in reporting practices.”
  • Autism is thought to be genetically based.

Some folks, especially those in the anti-vaccine movement, don’t want to believe that there is no autism epidemic though.

“If there is no autism epidemic, if there is a “stable incidence” of autism over recent decades, then this alone is powerful evidence against the vaccine hypothesis – and in fact removes the primary piece of evidence for a vaccine-autism connection.”

Steven Novella on The Increase in Autism Diagnoses: Two Hypotheses

After all, if there is no autism epidemic, then they can’t blame vaccines for be causing an autism epidemic…

More About the Autism Epidemic Myth

 

Autism Acceptance vs Autism Awareness

Apple has added an autism acceptance page to their app store.
Apple has added an Autism Acceptance page to their app store.

April is traditionally recognized as Autism Awareness Month and April 2 as World or International Autism Awareness Day.

These awareness campaigns are supported and driven by Autism Speaks and their “light it up blue” drives.

Many people will likely be surprised that there isn’t universal support for the “light it up blue” campaign of Autism Speaks to “shine a light on autism” on World Autism Awareness Day. Instead, in addition to the many people who think that April should be more about Autism Acceptance and less about autism awareness, there are many people who think that “Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities” because they don’t listen to #AcuallyAutistic people and historically:

  • have not included an autistic person among their senior leadership
  • have advocated anti-vaccine ideas
  • use a very small amount of their budget to directly help autistic people pay for the services and supports that they need

Instead of Autism Speaks, the Thinking Person’s Guide to Autism suggests that people look for an autism group that focuses on support (not a cure), evidence based interventions, inclusiveness, and advocacy for the human and civil rights of all autistic people. And that the focus move to acceptance.

Similarly, Steve Silberman, the author of Neurotribes, explains why autism awareness is not enough.

Autism Advocacy Groups

As everyone because more aware of autism, they are also becoming more aware of the differences in all of the autism organizations out there. And that some provide bad autism information.

Consider the Chili’s public relations blunder, in which they were planning to donate 10% of sales on April 7, 2014 to the National Autism Association, an anti-vaccine autism organization. That situation highlighted how important it is to know the organization you are supporting and or visiting information and advice.

The organization in question, in addition to promoting unproven autism treatments, like chelation, clearly states that they believe that “vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions.” They also state that “research to investigate, and reduce, adverse events in immunized individuals is currently nonexistent.”

The National Autism Association is the same organization that used anti-vaccine talking points to attack Dr. Paul Offit and his appearance on Dateline in an appearance with Matt Lauer that was critical of Andrew Wakefield. And it is the same organization that has tried to defend Andrew Wakefield’s fraud.

While many other autism organizations have distanced themselves from the idea that vaccines cause autism, this group is pressing on with the idea.

Why is that a problem? Keeping the focus on vaccines, after so many studies have shown that there is no link between vaccines and autism, diverts resources away from services and support for children and autistic adults.

Especially with the rise in vaccine-preventable diseases, including large measles outbreaks, it is very disappointing that Chili’s chose this organization to support.

Do you know how to find a reputable autism group that provides good autism information.

Reputable Autism Groups and Organizations

Among the most reputable autism groups and organization are the:

  • Autistic Self-Advocacy Network (ASAN) – Our projects seek to improve public understanding of autism, to involve the Autistic community in research that is relevant to the community’s needs, to empower Autistic people to take leading roles in advocacy, and to promote inclusion and self-determination.
  • Autism Society of America – Founded in 1965, the Autism Society helps over a million people each year through a grassroots nationwide network of local and state affiliates.
  • Autism Women’s Network (AWN) – a supportive community for Autistic women of all ages, our families, friends and allies.
  • National Autistic Society –  the leading UK charity for autistic people (including those with Asperger syndrome) and their families.
  • The Global and Regional Asperger Syndrome Partnership (GRASP) – works to improve and enrich the lives of adolescents and adults on the autism spectrum, and their families through, community advocacy & outreach, education, peer supports, programming and services.
  • The Arc and autism NOW – provides high quality resources and information in core areas across the lifespan to individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, caregivers, and professional in the field.
  • Autism Science Foundation – supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research.
  • Autistica – funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions
  • NOS Magazine – a news and commentary source for thought and analysis about neurodiversity culture and representation.
  • Golden Hat Foundation – changing the way people on the autism spectrum are perceived, by shining a light on their abilities and emphasizing their great potential.
  • Simons Foundation Autism Research Foundation (SFARI) – sponsors research that promises to increase our scientific understanding of autism spectrum disorders, thereby benefiting individuals and families challenged by these disorders
  • Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) – brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autism spectrum.

Are you still going to “light it up blue?”

How about checking out these other autism groups instead and learn more about autism acceptance. You might also be interested in these blogs by autistic people.