Chicago to LA – Addressing the need to lower the age of diagnosis

On Saturday the 7th, Autism Speaks organized two important events aimed at lowering the age of diagnosis and increasing access to early intervention in both Chicago and Los Angeles. These outreach events brought together volunteer clinicians, partner organizations and evidence-based resources and resource providers all together in the same place. The goal was to allow families from underserved communities to have access to clinical information and guidance about their child they had not yet received and might be unlikely to see otherwise. Not surprisingly, most of the families spoke only Spanish. Although time was relatively short for each family, they had already participated in scientifically valid and standardized interviews like the MCHAT so that the nature of the concerns were understood ahead of time. There were translators on hand at both locations and all the materials were provided in Spanish as well as English, including the First Concern to Action Toolkit, coming soon. Parents received summary letters which they could take to their health care provider for so that their concerns were documented and described. Recently, a report suggested that Latino families do not always receive early screening because of language and cultural barriers. These events were designed to take quick action to address these issues so that all children receive the same access to early intervention. In addition to access to clinical expertise, this approach includes translated and culturally adapted materials and access to instruments developed to identify children early. Below are recaps from each event, along with photos. So what if you don’t live in LA or Chicago? The Early Access to Care Team has developed a manual so that these events can take place from coast to coast. We look forward to announcing more of them in the future!

Chicago:

In Chicago, over 30 families from across the area either made appointments or just showed up and walked in to the Hope Institute Learning Academy. Here, twenty two expert clinical volunteers spent up to a full hour talking to families about their concerns. All day they were accompanied by a family buddy and a translator who helped them navigate from the check in area, to the private consultation room, to a resource area that included information about help and services in the Chicago area. All in all, there were over 85 volunteers who worked in some way with helping these families. They were large and small – one mother came in with her 4 children, others brought fathers and extended family members with one child. One family included foster children.

While there was a diverse mix of Hispanic, African American, and Caucasian parents, most of whom did not speak English, one thing that brought them together was a concern for the development of their child. They ranged anywhere between 1 year of age to 7 years of age. At around 3PM, a volunteer received a call from a parent who could not attend that day, but wanted to know when the next event would be in the Chicago area. The Chicago Autism Speaks team pulled in all types of volunteers, even the AS Young Professionals who entertained siblings in the playroom!

Special partners included the the University of Illinois at Chicago, Grupo Salto, The Autism Program of Illinois, common ground and craven closeouts, who all provided volunteers, resources, or helped donate supplies to make the event happen. A very very special thanks goes to Ann Cutler and Laurie Chern, whose dedication to this effort made all the difference.

 

Los Angeles:

The event in LA was held and Magnolia Place Family Center. Twenty four clinicians from UCLA and Children's Hospital of Los Angeles (an Autism Speaks Autism Treatment Center) met with 90 families from all backgrounds. Like the Chicago event, most did not speak English and many were recent immigrants to the US. In LA, most of the children were over 5 years old and should have been receiving care years ago. This is why our Early Access to Care initiative is so important.

One team helped a family who was fighting because the father couldn't accept something might be wrong with his child. After talking to a clinician and learning more about his child's development he took an active role in seeking out help and was able to support his wife in her concern.

A huge thanks go to the community partners that will be helping track these families after the event, particularly 211LA.