While nonprofits and advocacy groups toil all year long to bring attention and funding to causes related to autism, April is officially "Autism Awareness Month," and these organizations will gain the most attention in the next 30 days. As a result, we are inundated with baby blue puzzle-pieces and our Facebook feeds are filled with memes, pictures of adorable children sharing one-liners, all with the hope that these efforts will provide the support for individuals on the spectrum and their parents.
Autism Awareness Month commemorates the milestones achieved by the autism community as a whole and by individuals diagnosed with autism and reminds us how far we've come and how much work is left to do. Although these messages are imperative for individuals outside of our community, it's important to remember that families need support long after April has come and gone. Here are some ideas that I hope everyone affected by autism keeps in mind as these 30 days fly by:
1. Understanding the detection, diagnosis and cause of autism is necessary but only the first step.
Research surrounding diagnosis and detection is a necessary first step in the autism journey, but not the only step. Investing in research on diagnosis and causes is imperative to ensure the next generation's future, but it's important to keep in mind that today's parents require support relating to what to do today and tomorrow with their already diagnosed child.
2. Awareness should promote education about autism treatment.
A diagnosis does not always mean that families have a seamless path to treatment. Once diagnosed, families are bombarded with hundreds of treatments to choose from. Some government funding sources even fund controversially effective treatments. Awareness campaigns should focus on helping parents and professionals join in a shared commitment to acknowledging and respecting scientific evidence related to autism treatment. Some non-profits already focus on campaigns that give suggested red-flags about treatments that promises a "cure," treatments that no one has proven, treatments that advertise vague benefits, or treatments that promise that research is "coming." Today, families must sort through hundreds of treatments that often tout high levels of success with minimal peer-reviewed research until they adopt the most effective one. As this field grows and insurance continues to fund autism services, Autism Awareness Month should focus on helping parents differentiate between snake oil and solid treatment options for their child.
3. Autism is no longer a rare diagnosis.
It's no longer news that the CDC reports increased prevalence of individuals diagnosed with autism. To date, government funding on any and all of these issues has not caught up with this trend. TACA's Founder, Lisa Ackerman, addressed this issue in her article on government funding for childhood issues. The bar graph depicting the disparity in funding really is worth a thousand words. Our government is funding autism research, but it is clear that money is disproportionate to the number of people affected when compared to other funding. I hope that the research efforts continue to be renewed in the upcoming year.
4. The Social Network can be a powerful thing.
Innovation in our community is necessary, and it will only occur when parents turn to each other, talk, listen, and identify patterns and trends in problems that others might not see as problems. Many times parents assume certain tasks must be difficult. When difficulty arises, innovation can flourish. I have met incredible autism parents who have created unique solutions for problems based on their children's struggles and other parents' complaints.
A social network can also be helpful when choosing the best treatment options. Hearing other parent's stories doesn't necessarily promise the same outcome for your child, but it might shed light on quality indicators or characteristics that are associated with a high quality service provider. Whether on Facebook, Twitter, or in person, our social network also helps connect families with professionals whom they normally would not come into contact with and the opportunity to hear other parent stories. If a parent knows of providers who are educated and experienced in the delivery of evidence-based treatments this doesn't not guarantee that provider will be a good fit for their child, but it does give an indication of characteristics that tend to be associated with quality services.
5. We can't ignore the growing adult population.
More children with autism are going to high school than ever before. As our children grow into adulthood, more clinically sound programs should address their needs. Some parents worry about the day that their children grow into adults who are required to understand the nuances of community life, housing, employment and self-advocacy. This coming of age has its own challenges of long waiting lists and system costs. Some organizations are paving the way in providing new opportunities to this population by removing obstacles and supporting independence in the form of mentorship and job creation. As this population grows, my hope is that our community identifies best practices and support existing communities that address these needs.
This April, when Autism Awareness Month pushes a strong message of acceptance and open-mindedness, be sure to keep an eye out for other messages that can greatly change the way that our community develops and grows.
Follow Sara Gershfeld on Twitter: www.twitter.com/BehaveinLA