Autism Intervention Research Network on Physical Health

(AIR-P)

JOHN TSCHIDA, MPP

EXECUTIVE DIRECTOR, ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES (AUCD)

LAURA KAVANAGH, MPP

DEPUTY ASSOCIATE ADMINISTRATOR, MATERNAL AND CHILD HEALTH BUREAU (MCHB)

ALICE KUO, MD, PhD, MBA

PROFESSOR AND CHIEF, UCLA MEDICINE -PEDIATRICSDIRECTOR, UC-LEND PROGRAM

Overview The Autism Intervention Research Network (AIR -P)

is funded by the Maternal and Child Health Bureau at HRSA.

The purpose of AIR‐P is to establish and maintain a n in t e rd isc ip lin a ry, m u lt ice n t e r re se a rch fo ru m fo r sc ie n t ific co lla b o ra t io n a n d in fra st ru c t u re b u ild in g .

Th is Re se a rch Ne t w o rk w ill p ro vid e n a t io n a l le a d e rsh ip in re se a rch t o a d va n ce t h e e vid e n ce b a se o n e ffe c t ive in t e rve n t io n s fo r a u t is t ic in d ivid u a ls a n d in d ivid u a ls w it h o t h e r d e ve lo p m e n t a l d isa b ilit ie s , w it h a fo cu s o n a d d re ssin g p h ysica l h e a lt h a n d w e llb e in g a c ro ss t h e life sp a n .

National Coordinating Center

(NCC): UCLA PI/PD: Kuo

Data Repository & Network

Management: AUCD

Autistic Researcher

Review Board (ARRB)

Research Nodes (Steering

Committee)

Collaborating Research

Entities (CREs)

• AIR-P Scholars program

• Autism and Physical Health research days at AUCD and CARES conferences

• Annual supplement in Pediatrics

Health Care Transitions

Leads: Shea, Shattuck

• Emerging/ young adulthood

• Care coordination

• Education & employment

• Medicaid and public benefits

Gender, Sexual, and

ReproductiveHealth

Leads: Croen, Massolo

• Sexual education

• Contraception• STIs• LGBTQ+

health• Pregnancy• Women’s

health

Community Based

Lifestyle InterventionsLead: Gragnani,

Fernandes• Sleep• Physical

Activity• Nutrition• Substance

Use• Stress

Management• Social

connection

Primary Care and Health

Care ServicesLead: Kuo

• Patient experience

• Access to care

• Health care quality

• Dental care• Routine

health maintenance

Neurology

Lead: Wilson

• Managing neurological co -occurring conditions

• Seizure management

• Motor delays• Behavioral

neurology

Research Nodes

Genetics

Lead: Martinez

• Genetic screening/ counseling

• Rare/orphan diseases

• Family support

• Social networks

-------------- - - - - - - - - - - - -

The Proposal Review

01STEP

PROPOSAL CAN COME FROM ANYONE.

-------------

The Package

02

NCC HELPS CREATE THE "RESEARCH PACKAGE" TO DISSEMINATE.

STEP

03

The Network

STEP

-------------

04

The Analysis

STEP-------------

05

The Findings

STEP

The AIR -P “Research Engine”

ANYONE WHO WANTS TO JOIN THE NETWORK IS WELCOME!

MULTI -SITE DATA DOWNLOAD.

PRESENT AND PUBLISH.

• Administrative Review by the National Coordinating Center (NCC)

• Content Review by the Steering Committee (Research Nodes)

• Final Review by the Autistic Researchers Review Board (ARRB)

-------------The Proposal Review 01

STEP

PROPOSAL CAN COME FROM ANYONE.

-------------The Package

02 NCC HELPS CREATE THE "RESEARCH PACKAGE" TO DISSEMINATE.

STEP

PACKAGE INCLUDES :

• IRB Te m p la t e

• Re se a rch p ro t o co l w it h sc rip t s

• Te m p la t e s fo r in fo rm e d co n se n t

• Sp e c ific m e t h o d s fo r d a t a co lle c t io n

a n d e n t ry

03• "Research Package" is loaded

onto online platform• AUCD disseminates info to

network and collects data

-------------

• 15 "official" CREs• All entities in AUCD network

(133 university -based programs)

The Network STEP

NETWORK INCLUDES :

ANYONE W HO W ANTS TO JOIN THE NETW ORK IS W ELCOME!

-------------• Multi -site data download• Investigators analyze data• Assistance from NCC, as

needed

04 The AnalysisSTEP

DATA FROM ALL SITES ARE COMBINED.

-------------

• CARES annual meeting (Jul)• AUCD annual meeting (Nov/Dec)

05The Findings

• Findings presented at AIR -P Research Days

• Fin d in g s p u b lish e d in AIR -P Annual Supplement

STEP

OTHER MEETINGS:

P RESENT AND P UBLISH

--------------• Administrative review by the

National Coordinating Center ( NCC)

• Con t e n t Re vie w b y t h e Steering Committee (Research Nodes)

• Fin a l Re vie w b y t h e Autistic Researchers Review Board (ARRB)

- - - - - - - - - - - - -

Th e P ro p o s a l Re vie w

0 1STEP

P ROP OSAL CAN COME FROM ANYONE.

- - - - - - - - - - - - -• IRB Te m p la t e• Re se a rch p ro t oco l w it h sc rip t s• Te m p la t e s fo r in fo rm e d con se n t• Sp e c ific m e t h od s fo r d a t a

co lle c t ion a n d e n t ry

Th e P a cka g e

0 2

NCC HELP S CREATE THE "RESEARCH P ACKAGE" TO DISSEMINATE.

STEP

PACKAGE INCLUDES :

0 3

• "Re se a rch P a cka g e " is loa d e d on t o on lin e p la t fo rm

• AUCD d isse m in a t e s in fo t o n e t w ork fo r d a t a co lle c t ion

• 15 "o ffic ia l" CREs• All e n t it ie s in AUCD n e t w o rk (133

u n ive rs it y-b a se d p ro g ra m s)

Th e Ne t w o rk

STEP

NETWORK INCLUDES:

- - - - - - - - - - - - -• Multi -site data download• In ve st ig a t o rs a n a lyze d a t a• Assist a n ce from NCC, a s

n e e d e d

0 4

Th e An a lysis

STEP

- - - - - - - - - - - - -

• CARES a n n u a l m e e t in g (Ju l)• AUCD a n n u a l m e e t in g (No v/De c)

0 5

Th e Fin d in g s

• Fin d in g s p re se n t e d a t AIR -P Research Days

• Fin d in g s p u b lish e d in AIR-P annual supplement

STEP

OTHER MEETINGS:

Th e AIR-P “Re se a rch En g in e ”

ANYONE W HO W ANTS TO JOIN IS W ELCOME. P RESENT AND P UBLISH.

DATA FROM ALL SITES ARE COMBINED.

We are especially interested in supporting doctoral st u d e n t s , p o st -d o c t o ra l fe llo w s, ju n io r fa cu lt y, a n d n e w in ve st ig a t o rs .

P e o p le w it h live d e xp e rie n ce s a re e n co u ra g e d t o jo in .

Anyone can join the research network!

PATRICK DWYER , MA

AUTISTIC PHD CANDIDATE IN PSYCHOLOGY AT THE UNIVERSITY OF CALIFORNIA DAVIS

JACKIE RYAN, MA, CPA, CMA

AUTISTIC PHD CANDIDATE IN REHABILITATION SCIENCE AT THE UNIVERSITY OF ALBERTA

INTRODUCING

Presented by Jackie Ryan and Patrick Dwyer on behalf of:He a t h e r Bro w n , De n a Ga ssn e r, St e ve n K. Ka p p ,

Ari Ne ’e m a n , TC W a ism a n , a n d Za ch a ry J . W illia m s

Autistic autism researchers

Va rio u s p o in t s in ca re e rs (g ra d s t u d e n t s , le c t u re rs /fa cu lt y, co n su lt a n t s)

Co m b in in g p e rsp e c t ive s fro m b e in g re se a rch e rs , fro m h a vin g live d e xp e rie n ce , a n d fro m b e in g p a rt o f t h e a u t is t ic co m m u n it y

He lp fu l co m b in a t io n fo r re vie w in g re se a rch p ro p o sa ls

Bu t d o e s m a ke u s p rivile g e d a n d n o n -re p re se n t a t ive o f a ll a u t is t ic p e o p le

(Th is is o n e re a so n w e w a n t t o e n co u ra g e co lla b o ra t io n s b e t w e e n AIR-P s it e s & p ro je c t s a n d co m m u n it y s t a ke h o ld e rs -m o re o n t h a t la t e r)

Who are we?

● Descriptively, means all minds/brains are different

● Prescriptively, refers to a political movement opposing cures/normalization for autism, instead advocating for acceptance, supports, respect for autistic people’s own goals and objectives, and promotion of well -being/quality of life

● Not just about autism - the neurodiversity movement also includes ADHD, learning disabilities, and many other neuro -minorities

● The neurodiversity movement does accept teaching of adaptive skills

● The neurodiversity movement does accept taking a medical, cure -oriented approach to co -occurring medical problems (e.g., epilepsy)

Neurodiversity

● PERMA Model, Five Pillars of Well -Being (Seligman, 2011):

● Positive Emotions - subjective well -being

● Engagement - flow states (relevant to autistic hyper -focus, intense interests)

● Positive Relationships - social connectedness (note: autistic individual’s goals may differ from neurotypical norms)

● Meaning - sense that one’s life has direction, purpose, and value

● Accomplishment - feelings of competence, mastery

● The ARRB will use this framework to determine if proposed projects have potential to improve autistic people’s well -being

Well -Being

● Intersectionality

● Adults and aging

● Provider and system barriers to accessing medical care, including how autistic communication differences, interoceptive difficulties, etc., could lead to barriers in context of standard assessments and treatments

● Moving beyond description of patterns of co -occurrences and towards understanding of mechanisms at patient, provider, system, and population levels

Research Priorities

1) To use our dual perspectives as researchers and autistics to guide AIR -P re se a rch t o w a rd s p ro m o t in g a u t is t ic p e o p le ’s h e a lt h & w e ll-b e in g

2) To p ro m o t e a n e vid e n ce b a se t h a t is sc ie n t ifica lly rig o ro u s, in c lu sive o f h e t e ro g e n e o u s p o p u la t io n s w it h in t e rse c t io n a l id e n t it ie s , a n d se n sit ive t o co m m u n it y n e e d s

3) To in sp ire o t h e r re se a rch n e t w o rks a n d o rg a n iza t io n s t o u se in n o va t ive m o d e ls t o in c re a se a u t is t ic co lla b o ra t io n in a ll s t a g e s o f re se a rch fro m co n ce p t u a liza t io n t o d isse m in a t io n

Our Primary Goals

Our Primary Goals (cont’d)

4) To ensure that results of AIR -P research are communicated respectfully and in a manner that is accessible to autistic people and other stakeholders

● Consider additional media and formats such as lay summaries (see the ones in Autism in Adulthood), video presentations, video discussions/interviews

● Respect guidelines and autistic opinions about appropriate language such as Bottema -Beutel et al., 2020; Bury et al., 2020; Kenny et al., 2016

● Not all autistic people agree about everything, but show our community you are making serious effort to be respectful and sensitive

● Remember, the pathology language we use - deficit, disorder, etc. - is highly subjective and unscientific!

5) To foster collaborations between AIR -P s it e s & p ro je c t s a n d a u t is t ic p e o p le , ca re g ive rs , o t h e r co m m u n it y s t a ke h o ld e rs

● Re se a rch sh o w s in fo rm a t io n /t ra in in g in t e rve n t io n s a re m o re e ffe c t ive w h e n t h e y a re d e ve lo p e d in p a rt ic ip a t o ry m a n n e r - in co lla b o ra t io n w it h co m m u n it ie s - t h a n o t h e rw ise (Gille sp ie -Lyn ch e t a l., 20 21)

Our Primary Goals (cont’d)

5) Collaboration (cont’d)

● Co m m u n it y-b a se d p a rt ic ip a t o ry re se a rch (CBP R) - co m m u n it y co lla b o ra t o rs a re e q u a l p a rt n e rs fro m ve ry b e g in n in g (w h e n p ro je c t is d e ve lo p e d /co n ce p t u a lize d ) t o e n d (w h e n fin d in g s p u b lish e d )

● St a ke h o ld e r e n g a g e m e n t , co m m u n it y a d viso ry b o a rd s , e t c .

Our Primary Goals (cont’d)

5) Collaborations (cont’d): Some guidelines from Nicolaidis et al., 2019

● Co n sid e r co m p e n sa t io n : fin a n c ia l, a u t h o rsh ip s , e t c .

● Co n sid e r a cce ssib ilit y: m u lt ip le m o d a lit ie s fo r p a rt ic ip a t io n (ve rb a l, t e xt ), c la rit y o f co m m u n ica t io n , d e c is io n -m a kin g p ro ce sse s , e t c . Asse ss n e e d s .

● Co n sid e r t ru s t :

● Be a w a re o f ske p t ic ism o f co m m u n it ie s t o w a rd s re se a rch , a n d a c t ive ly w o rk t o p ro m o t e a n d m a in t a in t ru st

● Do n ’t p a t h o lo g ize co lla b o ra t o rs in e ve n t o f d isa g re e m e n t o r p ro b le m s

Our Primary Goals (cont’d)

5) Collaborations (cont’d) Representation considerations:

● Diffe re n t t yp e s o f live d e xp e rie n ce - like co n t e n t e xp e rt ise

● In t e rse c t io n a lit y

● No n sp e a kin g p e o p le w h o d o n ’t co m m u n ica t e flu e n t ly - a re t h e y b e st re p re se n t e d b y t h e ir ca re g ive rs o r b y n o n sp e a kin g p e o p le w h o d o co m m u n ica t e flu e n t ly? Or ca n t h e y re p re se n t t h e m se lve s u sin g n o ve l m e t h o d s, su ch a s p h o t o vo ice , a rt s-b a se d m e t h o d s, De e p Asse ssm e n t ?

● Au t is t ic ch ild re n - a re t h e y b e st re p re se n t e d b y t h e ir ca re g ive rs o r b y a u t is t ic a d u lt s? Or ca n t h e y re p re se n t t h e m se lve s u sin g n o ve l m e t h o d s?

Our Primary Goals (cont’d)

● We are excited by the innovative approach taken by the AIR -P, trailblazing the synthesis of neurodiversity perspective and promotion of well -being with medical approaches to co -occurring medical problems

● We are encouraged by the manner in which AIR -P has taken steps to include the autistic community in research

● We look forward to working with AIR -P sites and projects to promote research that is scientifically rigorous, clinically applicable, inclusive of heterogeneous populations, and driven by community priorities, with specific emphasis on the notion that such research will ultimately improve the health and well -being of autistic people

To Conclude

EMILY HOTEZ, PhD

ASSISTANT PROFESSOR, UCLA DEPARTMENT OF MEDICINEPROJECT SCIENTIST, AIR-P

AIR-P Scholars Program

• The Autism Intervention Research Network on Physical Health(AIR -P) will support an AIR-P Scholars Program beginning in 2021.

• Goals/Objectives–To launch the next generation of researchers seeking to

promote the health and well -being of autistic individuals across the lifespan:• To provide pilot and feasibility funding for research projects;• To provide opportunities for mentorship, training, and professional development; and

• To facilitate Network collaboration.

AIR-P Scholars Program

• Eligibility–Early investigators (e.g., doctoral students, post -doctoral

fellows, & early career faculty)–Any investigator interested in transitioning into research

in autism/physical health

AIR-P Scholars Program• Research Support

–One -year pilot and feasibility funding of up to $25k• Mentorship and Training

–Applicants will apply with their faculty mentor, who will agree to provide mentorship/guidance for their project.• All Mentors will meet 2x/year with the AIR -P Steering Committee to brainstorm opportunities to facilitate the continued development of the Scholars

• Opportunities for Publishing and Presenting –All Scholars will present their findings at Research Days,

contribute to AIR -P Supplements in Pediatrics, and engage in other Network activities.

Example Application Criteria

Significance/Merit• Does the research have significant potential to address a gap in

knowledge in autism/physical health?• Does the proposed research align with the goals of the AIR -P/ARRB?

Methodology/Approach• Is the project likely to be accomplished in 12 months?• Are the study concept and design appropriate for a pilot/feasibility

study?

Investigator Qualifications• Are the PI and other key personnel adequately trained and qualified

to carry out the project? • Is there an appropriate plan for supervision from the mentor ?

RFP

January 2021

Application Due

March 2021

NCC, ARRB, and

Steering Committee

Review May2021

Funding Notification

June 2021

Start of Funding

September 2021

Application Timeline

Contact Us: airp@mednet.ucla.edu

Feedback Survey:

Contact Us: airp@mednet.ucla.edu

Feedback Survey:

Thank you!