We continue our Autism Month blog series with Autism Awareness, Acceptance and Action- Autism Month from a Provider Perspective from Jennifer Mannheim, ARNP at the Autism Center.
In 2000, according to the Centers for Disease Control and Prevention (CDC), 1 in 150 8-year-olds had autism. The most recent numbers from the CDC (based on data from 2018) show that now 1 in 44 8-year-olds have autism. Here is a link to the CDC website with those numbers. So, what happened in those 18 years? This is a question many people have weighed in on with lots of theories, some more scientifically based than others. Truthfully, there is not just one reason, but many reasons why autism is diagnosed more now than in 1980 when it was first officially recognized in the Diagnostic and Statistical Manual of Mental Disorders 3rd Edition (DSMIII). At that time, it was estimated that 1 in every 2,000 children had autism.
I started my work as a medical provider caring for children with autism and other neurodevelopmental disabilities in 2001. Just the year before, when I was still in training, the American Academy of Neurology and the Child Neurology Society recommended that providers should routinely screen for autism at regular well child visits. Here is a link to the article. The recommendations included screening tools designed to identify symptoms associated with autism such as The Checklist for Autism in Toddlers (CHAT) and the Autism Screening Questionnaire (ASQ). In 2007 the American Academy of Pediatrics published guidelines on how to diagnose and manage treatments for children with autism. Then in 2008, the United Nations made April 2nd World Autism Awareness Day. Here is the link to the announcement. The UN held 2 events where participants met to speak “about their personal efforts in raising awareness and eliminating stigma associated with autism, discuss the daily struggles of people with autism, and highlight the importance of a better understanding of the disorder.” They also shared “personal perspectives on the impact of autism both locally and globally.”
Efforts to promote autism awareness have been effective in contributing to the increased number of people diagnosed with autism as well as the increased focus on funding for further research, treatment and support for autistics. Is it enough? No and more must be done. This is why Autism Awareness Month needs to still exist; however, a change in focus is needed.
The autistic self-advocacy community and neurodiversity movement also began growing around the early 2000s. Neurodiversity is the idea that brain-based differences like ASD are natural variations in who we are as humans and may be incorporated as part of an individual’s identity. The neurodiversity movement celebrates individual differences and understands that not every brain works the same or experiences the world in the same way. It promotes identification and building of individual strengths. Many individuals who embrace the concept of neurodiversity believe that people with differences should not change to fit societal expectations of “typical” people; instead, they need acceptance and possibly accommodations to achieve their goals. Examples of accommodations for an autistic person may include adaptations to their workspace to better meet their sensory needs such as a quieter location or headphones if it is too loud, as noises can make it impossible to work. Many supporters of the neurodiversity movement have advocated for a change from an autism awareness focus to autism acceptance.
Other autistic advocates feel that the social model that includes neurodiversity is not supportive of autistics with severe disabilities such as those with intellectual and language impairments or challenging behaviors, who require a very significant level of support. Often it is families who are advocating for their loved ones with autism who are not able to speak, post or tweet for themselves. Families of autistics that require a high level of support, feel the difficulties their loved ones face are far greater than any potential strengths related to their autism. Many of these advocates support a movement from autism awareness to autism action. Action means adequate resources and funding of those resources to provide the level of support these autistics need to keep them safe and help them improve their quality of life.
As a provider I see autistics across this whole spectrum– from those who identify as neurodiverse, are proud to be autistic and may not require additional supports in their daily lives to those who need a very high level of daily support as they struggle to communicate basic needs and can be extremely aggressive towards those trying to support them. Even though all of my patients are autistic, their needs are very different. In my line of work there is no “one size fits all.” I see the need to promote autism acceptance and action.
While there is a spotlight on autism this month, my wish is that no matter where you or your loved ones may land on the autism spectrum, we can use this time to continue to educate the community and ourselves on how to accept autistics for who they are and help them get the right supports. Autistics and their families should feel safe, fulfilled, and have every opportunity to be a vital part of their community here in Washington State and around the world.
Jennifer, a few words that come to mind when I think of how you interact with autistic patients and their families; respectful, compassionate, dignity, hope, dedication, spark, grace, open-minded, focused, and flexible. Thank you for all you do for the autism community from the excellent care you provide at the Autism Center, launching the new Conversations about Autism monthly series, to the many autism-related projects in the community that focus on the power and hope of neurodiversity and the vital importance of seeing the many positives and contributions our autism community is making in the world. Thanks for keeping the bar high for our kids. You are an outstanding provider!