Kaarin Anderson Ryan, PhD, BCBA. 2.18.20
What makes sense to you?
In a world of constant access to information, it can be difficult to make sense of anything. What’s true and what’s not true? Who are the best people to follow? Which resources can you trust? While some of what we see out there is obviously reliable, or obviously NOT reliable, there is a mountain of information in the middle that needs to be sorted through and navigated. It is so easy to get pulled into a world of bad information, and it is hard to know how to make sense of everything we have available.
For example, look up any newsworthy topic. You will find pages of hits on that topic, and if you read any of the articles, they will likely have additional links to follow. And it all looks real and legitimate. But unless you are a news aficionado, you may give the same value to every single article that shows up for that topic, even though the odds are that some of that info is faulty.
All this is part of our lives now, every day. And we individually figure out how we are going to handle filtering the information. But for some situations, we need to know how to make sense of what’s there, what to believe and not believe.
Let’s take autism as an example of a topic with lots of information to be found. If you search it, you will find a number of legitimate sites that describe autism. You will also find self-help and screening quizzes from all kinds of websites, information about the vaccine-autism connection, with some saying vaccines cause it and others noting that there is no evidence for this, and sites blaming the increase in autism to everything including vaccines, environmental problems, and diet. Causes for autism are also highlighted using these same ideas, and also including things like not using prenatal vitamins, hormones in food, and genetics.
Even though you can find websites to tell you all kinds of things about what causes autism, the only sound research shows some genetic component, although it is unclear what this might be.
And while autism has had a large increase, it is not an alarming epidemic as some would have you believe. Many people don’t realize that in the 1990’s the diagnostic criteria for autism changed it for being a very specific set of symptoms to more of a spectrum disorder. So all of the sudden, thousands of people who would not have been diagnosed as having autism became eligible for that diagnosis. This itself sparked a surge in diagnoses.
At the same time, the autism awareness movement started to take hold, with new organizations popping up to help raise awareness and provide support for people with autism. Schools started offering extra accommodations and guarantees of support if a student had an autism diagnosis. Autism awareness has its own symbol (puzzle ribbon), its own month (April), and an endless stream of events, fundraisers and activities to support autism awareness. We have also seen an increase of awareness in our entertainment industry: People with autism are represented in movies and popular TV shows as well as books. There are podcasts about autism. There are newsletters just for autism. With greater awareness, more and more parents are taking kids in for screening when they see signs of autism. Additionally, professionals including pediatricians and teachers are recommending screening for autism when warranted, based largely on the increased awareness that has been build for the past 25 years.
(PS, now that we have the awareness well-covered, the next challenge a lot of people see is autism acceptance, but that is a post for another day).
Now that I have made some points about common misperceptions about the causes for autism and its recent increase, let’s try to make some sense of what to do if you or someone you love has autism.
Become informed of what’s available in your area. There are excellent Applied Behavior Analysis (ABA) service providers in many of our communities in the United States. Since early intervention is vital to help children with autism overcome some communication and behavioral challenges, this is a good first step.
Learn about local and state laws regarding insurance coverage for autism services. Many states have laws in place to ensure coverage for ABA services.
Learn about local and state laws for education. Education systems provide certain accommodations and supports specifically to help students on the autism spectrum.
Learn about local and state laws for providing support to adults with autism and other needs, as well as finding out what organizations provide support for adults.
Meet with professionals who understand autism to get guidance, support, and professional services (speech, occupational therapy, behavior therapy, etc.).
Become involved in local support groups and advocacy groups for autism. Parents who have been through the process are some of the best people to talk to about doing what’s possible for your child.
Finally, find strength through optimism. With so much awareness, therapy, and ongoing support, autism does not have to be viewed as a dark path of confusion. Instead, focus on what’s there to help light the path, see the sense, and accept the support.