Home > Science, Uncategorized > Launching ‘Move the Needle’ – A conference to advance early detection and intervention

Launching ‘Move the Needle’ – A conference to advance early detection and intervention

Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.

While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.

Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”

Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.

On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.

Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:

  • Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to  empower families.
  • We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
  • We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
  • Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.  

These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.

Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.

  1. March 5, 2012 at 4:33 pm

    First, I want to congratulate you on the great initiative of this convention. I look forward to hearing more about what will come out of the “Move the Needle” initiative. Everything that increases the awareness and helps educate not only people in general but also professionals that work in this field, about autism and early intervention is of great interest. Thank you for your enthusiastic and hard work.

    My name is Ragnhildur (Ragga), an Icelandic mother of 2 boys, but currently live in Denmark. In both countries, there is a standard checkup for kids around the age of 2,5 years. My older son who was diagnosed 6 months ago, then 4,5 years old, was already showing some early signs at the age of 2,5 and if they’d been detected there and then, might have led to a much earlier diagnosis and therefore earlier intervention. I’m sure these standard checkups take place in most countries and if signs such as linguistic delay, repetitive behavior (such as stimming), lack of eye contact etc. would be screened at these checkups I’m sure it would be possible to lower the diagnosis age somewhat.

    Yet, there is another problem, at least where I come from. When suspicion arises that there might be something wrong, people often have to wait for months before their child gets an appointment with a pediatrician. If there was some way to minimize the waiting time, it would also be of much help.

    Lastly comes the matter of ‘too young to be sure’ answer. We actually went through a screening process with our son when he had just turned 3. At that point, his vocabulary was still limited and his speech very incomprehensible – even to us. There were other signs (now that I know) but the most profound was the speech delay. At that time, he was diagnosed with an increased risk of some developmental condition but considered too young to be sure and thus, did not get any formal diagnosis. We were simply told to have him checked again in a couple of years. I believe this kind of mindset is what is slowing down the diagnosis process the most.

    Again thank you for an interesting post. I hope great things will come out of this initiative.

  2. Sally Perea
    March 5, 2012 at 11:33 pm

    Our son was diagnosed in CA at age 2. We moved to OH shortly after, and the services for kids less than 3 are saddly nonexistant at the state level. Now, as he is about to turn 3, our stuggle is trying to get extended school year services on his IEP. We’ve been surprised that the board of education does not support the need for ESY for these young children who need year round therapy. Maybe it is just out region, but I see this as a great opportunity for change.

  3. March 6, 2012 at 3:31 am

    “moving the needle” is good way to describe moving forward. i would like to see that along with the a.b.a the professionals understand what causes the meltdowns. as with my daughter i had to understand why she would get upset. why she would put knots on her head from hitting her head on the wall. learn her every sound to understand her. no sign language would work as she would not look at you or let you touch her hands or touch you in any way. she would not point or show what she wanted. she is 22 and has changed so much through the years. i can tell you that understanding her made a huge difference in the way she reacts everyday. like if i am too busy to understand she wants something she gets really angry. i have learned to talk her out of her screaming fits by telling her to take some deep breaths and she comes out of it. nobody taught me this. i had to learn by instinct and wish i could sit with some of the children for a day and help their family understand what they are trying to say and what they like and how to get them to show they understand when you talk to them or about them. my daughter lights up her eyes and her smile is amazing when i get what she wants. singing to her has been therapy in another way. i thought my daughter was lost forever but i can see there is a individual with emotions and wants to talk so bad to say what she wants. she cannot talk but she is humming to me and she gets me and her dad to sing with her and laughs when we repeat her. sometimes will pick up where we stop. amazing! i love my daughter and she has taught me so much.

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