Most often, involvement in the Autism community emanates from a personal relationship: a diagnosed child, a friend who is raising a child with autism. These relationships serve as the catalyst to improve the lives of others in similar circumstances. Yet, to affect significant change for those diagnosed with an ASD, we, the engaged community, must reach beyond this bubble to recruit community members without such personal connections who are nevertheless motivated to create change.

Reaching Parents Before They Are Parents is a phrase that focuses on total community awareness and the axiom, “It takes a community to raise a child.” The essence of this phrase is that parents of diagnosed children are not the only stakeholders – all of us in the community have a stake. Those who are not parents today could find themselves seeking help from our organizations as parents tomorrow. And even if that were not the case, the rise in ASD diagnoses is significant enough to concern everyone.

This stated, many organizations believe they are reaching their surrounding communities and creating community-wide awareness; yet the messages often fall short.

Organizations take action through parent-focused initiatives. These initiatives are crucial, as the organizations exist to help alleviate the stresses these parents face. Unfortunately, these initiatives also contribute to “tunnel vision,” where the organization as a whole begins to focus on reaching only parents. 

“Positioning” is a foundational idea in strategic marketing, as it speaks to how the target audience perceives a product, service, or even a company. Applied in this instance, parent-focused initiatives position the ASD concern as a parent-only concern. By marketing only to parents, we communicate, that only parents should care. 

It is obvious how detrimental this line of communication can be at the community-level. Instead of communicating in a manner that includes the community, it tends to be exclusionary.

However, what is not so obvious is how detrimental this position can be within an organization. “Positioning” can affect internal employees and advocates, as much as it can affect an external audience. Individuals working within an organization internalize this position and focus their attention exclusively on parents. The impact the organization can have within its community is then greatly reduced.

Greater effects can be achieved if we expand the bubble, to where everyone is a stakeholder, and we focus our energies towards community-wide awareness.

For example, proper interventions after early detection are proven to lead to improved outcomes for the child, as well as the family. Yet, parent-focused initiatives, by design, wait until someone is a parent. Would it not be better to begin to communicate the importance of this information before the individual becomes a parent through community-wide awareness initiatives?

Community-focused initiatives lead to informed communities that can better serve the individuals in need. Parents rely on friends and family for their own personal support network. Information dissemination  strengthens these support networks, reducing the reliance on parental-awareness.

Further still, community members not originally seen as contributors now become involved, ushering in a wealth of experience and vigor that might otherwise have gone untapped.

As members of the engaged community, we must be willing to expand our view of stakeholders, and then communicate accordingly. It is already happening on the international and national levels. Although the Autism Society of America has been celebrating April as Autism Awareness Month since the 1970s, the United Nations voiced international concern by designated April 2 as World Autism Awareness Day on December 18th, 2007. At the national level, Autism Speaks has launched a series of campaigns targeting the general population’s awareness of ASDs.

We may not be able to connect through shared experiences or struggles; however, we can connect in our shared desire to improve the lives of children. This desire is one that can be shared amongst parents of children who have been diagnosed and those who have not, as well as concerned community members. People can empathize and connect with a mission regardless of their status – if the case is positioned properly.

I, for one, speak from experience. I am not a parent; yet I work with an organization whose focus is parental support. Often asked, “How do you connect?” my response is, “whether I am a parent or not, this is a great cause.”

I encourage everyone reading this article to take the initiative to expand the bubble. If you are a board member or a manager within an organization, take the time to assess how your organization is communicating to the community. Ensure that your message is one that is both effective for your mission, as well as inclusive of the broader community; not just the main constituents.

It takes a community to raise a child; by reaching parents before they are parents, the community is engaged to significantly help bring about the changes for which we so desperately fight.