Thompson Policy Institute is proud to introduce its second expert interview. Our interviews strive to share insight about the disability community in hopes to ultimately impact policy change. Thompson Policy Institute explores and researches topics such as education, housing and integrated communities for people and families with disability and autism. This interview features pediatric neurologist who shares his expertise about policy, research and clinical practice with us.

Dr. Joe Donnelly is an expert in child neurology. His special interests include: providing support to families and caring for children with autism, ADHD, and other developmental disorders. He serves as the Medical Director at The Center for Autism & Neurodevelopmental Disorders and is the Director of the Neurodevelopmental programs at UC Irvine. Dr. Donnelly is a Clinical Professor at the University of California, Irvine, School of Medicine.

The following is an excerpt from his interview with Lisa Boskovich.

 TPI: Given your experience in the field of Autism- what do you think are the most important topics to research/address at this time?

 I think that is a simple question, but a more complicated answer. There is so much to be learned in every clinical area of basic science and research. One of the things we need to know more about is the outcomes of our work.

Overall, we need to evaluate developmental trajectories and how they relate to outcomes, in order to help families determine if an intervention is going to work and how much its works. To do this we need to: identify what the specific issue is, implement an appropriate intervention, and then follow the person over time in order to determine if the intervention we provided helped improve outcomes. If you don’t know what the developmental trajectory is or the outcome- how can you conclude that the intervention was worthwhile? I also think that the whole area of adult outcomes and adult needs has been neglected.

TPI: What policies or legislation have you seen that have positively or negatively impacted this community? Anything specific to Orange County /CA?

 The fact that ABA (Applied Behavior Analysis) is being provided to individuals who have Medicaid Insurance. To me, this has been the biggest positive change in Autism care that has happened over the past twenty years. State by state laws were passed that indicated you needed to provide ABA for those who qualify and that’s been revolutionary.

TPI: As a practitioner/medical director- what kinds of information would you like to see come out of a policy institute?

 It would be nice for a policy institute to investigate areas where there is either no information or controversial information and to arrive at some kind of a position to help our field move forward.

What people like myself are interested in is not just someone who researches an issue and publishes a policy paper, unless that’s going to change things. Is that policy paper, then a lever to change legislation? Is it going to push the electorate? Is it going to engage families? Is it really going to push something or will that be used to create some kind of action arm of the policy institute to not just talk about policy but also change policy? How are the areas of investigation going to be used to change policy and improve the lives challenged by Autism?

TPI: What would be most helpful/user-friendly to you and your colleagues?

It would be helpful to fill in gaps in the following 3 areas: education, community, and in teaching. To try to improve the understanding and the knowledge in our fields so families can get better care. Families would certainly get better, more efficient care, if more physicians were comfortable and capable of identifying, recognizing, diagnosing, and managing the medical needs of kids with neurodevelopmental disorders. If teachers were more comfortable with handling these kid’s behaviors, and families and first responders and police departments were better at handling individuals with autism at home and in the community, that would be helpful. We also need more funding in these areas. As well as more mental health resources and assistance for co-occurring problems including: anxiety, depression, and bipolar disorder.

We need to answer a number of questions. How can we most easily determine if an individual is “disabled” by having a diagnosis of autism? What is used to make that determination? Is it an interview? It is not just their cognitive test scores. What tools do we have to measure self-care or self- direction, judgment, and executive function? How good are they? When do they become low enough to merit support by society? Sometimes it feels like you have to “fail” before you can be made eligible for benefits, because how do you know this person might not do very well? We have a lot of examples of individuals who are believed to be on the autism spectrum perhaps that are doing fine and we have others with no support who are really struggling.

 

Interview conducted by Lisa Boskovich, Graduate Research Assistant at TPI

Woman smiling.