transition of individuals with autism to adulthood: a ... · supplement article pediatrics volume...

PEDIATRICS Volume 141, number s4, April 2018:e20164300SUPPLEMENT ARTICLE

Transition of Individuals With Autism to Adulthood: A Review of Qualitative StudiesKristy A. Anderson, MSW, a Collette Sosnowy, PhD, a Alice A. Kuo, MD, PhD, b Paul T. Shattuck, PhDa

aLife Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, Philadelphia, Pennsylvania; and bDepartments of Internal Medicine and Pediatrics, University of California, Los Angeles, Los Angeles, California

Ms Anderson conceptualized and designed the review, conducted the initial literature search, conducted qualitative analyses on the reviewed articles, and drafted the initial manuscript; Dr Sosnowy conducted analyses, established interrater reliability in the inclusion of the reviewed studies, and participated heavily in the interpretation, drafting, and revision of the manuscript; Dr Shattuck participated in the conceptualization of the manuscript and critically reviewed each iteration of the manuscript; Dr Kuo advised in the development of the manuscript’s research question and direction, and critically reviewed the manuscript; and all authors approved the final manuscript as submitted.

DOI: https:// doi. org/ 10. 1542/ peds. 2016- 4300I

Accepted for publication Sep 26, 2017

Address correspondence to Kristy A. Anderson, MSW, A.J. Drexel Autism Institute, Drexel University, 3020 Market St, Suite 560, Philadelphia, PA 19104. E-mail: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2018 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: Supported by the Health Resources and Services Administration of the US Department of Health and Human Services (grant UA6MC27364) and the Health Care Transitions Research Network for Youth and Young Adults with Autism Spectrum Disorders (grant amount $900 000). The information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, the Department of Health and Human Services, or the US Government.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

Many young adults with autism spectrum disorder experience poor transition outcomes in key areas, including postsecondary employment, higher education, health care, social connectedness, and independent living, yet we lack a clear understanding of the specific factors that impact these outcomes. We reviewed qualitative research in which the perspectives of youth and young adults with autism spectrum disorder, parents, services providers, and other stakeholders were gathered to identify barriers and facilitators to optimal outcomes. Findings revealed that poor transition outcomes are influenced by several factors, including poor person-environment fit, uncertainty about the roles of parents, and the lack of comprehensive or integrated services. These findings also revealed the aspects of familial, organizational, and policy contexts that may be targeted for interventions. Finally, stakeholders emphasized that supports should be individualized and focused on the changing aspects of the young adult’s social and physical environment rather than behavior change. We discuss implications for policy and practice and provide recommendations for further research.

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PEDIATRICS Volume 141, number s4, April 2018 S319

An estimated 1 in 68 children in the United States meet diagnostic criteria for autism spectrum disorder (ASD), a lifelong neurodevelopmental condition characterized by difficulties in social communication and the presence of repetitive or restrictive behavior patterns.1 Approximately 50 000 people with ASD age into adulthood each year, 2 and a majority experience poor postsecondary outcomes across multiple domains, including employment, education, health care, social engagement, and independent living.3 Although poor outcomes after high school are a concern themselves, they also increase the risk for poor individual outcomes in later life.4, 5

The growing prevalence of young adults with ASD has lent urgency to efforts to improve transition programs and supports.6 Researchers in quantitative studies have established an evidence base documenting poor outcomes and identified a range of contributing factors, including a lack of financial resources, 7 low parent expectations and involvement, 8, 9 and poor interagency collaboration between high schools and adult service providers.9 A more in-depth understanding of the needs of transitioning youth and their families, the strategies they employ to achieve desired outcomes, and the availability and efficacy of supports and services can inform program development. Qualitative research in which the perspectives of stakeholders are directly solicited is uniquely suited to understanding the mechanisms contributing to poor outcomes. In this scoping review, we synthesize findings from published qualitative research about the transition to adulthood to discuss implications for practice and provide recommendations for future research.

METHODS

In this scoping review, we synthesized original qualitative

research studies aimed at describing the transition experiences of youth and young adults with ASD. The scoping review is a useful approach to mapping research evidence about a broad or emerging topic area. Unlike systematic reviews, scoping reviews typically do not use quality-assessment tools to exclude research studies.10 The lead author searched electronic databases for articles published between January 2000 and December 2015 that met the following criteria: (1) a primary focus on youth or young adults with an ASD; (2) used qualitative methods to understand the perspectives of stakeholders (youth or young adults with autism, families, and support professionals, such as college faculty and health care providers); and (3) a primary aim of describing supports, services, or policies for youth or young adults with ASD in the areas of postsecondary education, employment, independent living, social engagement, and health care. We included only peer-reviewed studies conducted in the United States and excluded reviews of research. We chose to limit our review to studies conducted in the United States because the transition experiences of youth and their families, services, and policies may vary significantly across contexts. Seventeen articles met the criteria for inclusion.

We employed thematic analysis techniques to synthesize and analyze this body of research. Thematic analysis is a method for identifying, analyzing, and reporting patterns within data11 qualitative research. Concurrent with our appraisal, we extracted the following information: (1) sampling, including sample characteristics, the sampling frame, and sampling approach; (2) data collection, including the mode of administration and instrument development; and (3) analysis, including analytical approach, rigor, and reporting (Table 1).12, 13

RESULTS

Study Characteristics

Studies were focused on several areas related to transition, including high school transition planning, 22, 24 postsecondary education, 14, 15, 20, 26, 28, 29 employment, 21, 23, 27 health care delivery, 16, 25, 30 and the general transition to adulthood.17 – 19 Some studies were specifically focused on the challenges of transition for young adults with autism, 15, 17, 19 whereas others examined the transition experiences of young adults and their families more broadly.16, 18, 23, 27, 28 Five studies were focused on service transitions and used stakeholders’ perspectives to help inform the development of a specific intervention22, 24 or describe the quality and availability of existing services in colleges.14, 26, 29 Researchers in other studies asked employers, 21 health care professionals, 25, 30 and college faculty20 to describe the promising strategies they use to help facilitate optimal outcomes for young adults with autism.

The total sample across all 17 research studies included 121 individuals with autism, 186 parents or caregivers, and 192 professionals. Two studies were focused exclusively on the views of parents, 26, 28 2 studies were focused on adolescents or young adults on the autism spectrum, 14, 19 and 4 studies included the perspectives of both parents and their children on the autism spectrum.15 – 17, 23 Researchers in 3 studies elicited the views of all 3 stakeholder groups.18, 22, 24 Researchers in the remaining 6 studies collected the views of college faculty, 20 college disability student services staff, 29 employers, 21 vocational service providers, 27 or health care professionals.25, 30 Across the 12 studies in which youth or young adults with autism were sampled, the mean proportion of


ANDERSON et alS320

TABL

E 1

Aim

s, M

etho

dolo

gica

l Cha

ract

eris

tics,

and

Key

Fin

ding

s of

Qua

litat

ive

View

s St

udie

s

Auth

or (

Date

)Ai

ms

Recr

uitm

ent a

nd S

ampl

e Ch

arac

teri

stic

sDa

ta C

olle

ctio

n an

d An

alys

isKe

y Fi

ndin

gs

Brie

l and

Ge

tzel

14

(201

4)

To d

escr

ibe

colle

ge s

tude

nts’

ex

peri

ence

s in

car

eer

plan

ning

an

d pr

epar

atio

n, th

e us

e of

ca

mpu

s se

rvic

es a

nd s

uppo

rts,

an

d th

eir

satis

fact

ion

with

thes

e se

rvic

es

Seve

ntee

n m

atri

cula

ting

post

seco

ndar

y-le

vel s

tude

nts

with

ASD

who

wer

e re

ceiv

ing

supp

orts

and

ser

vice

s re

late

d to

thei

r di

sabi

lity,

age

s 18

–43

y

Stru

ctur

ed fa

ce-to

-fa

ce in

terv

iew

an

d sh

ort-a

nsw

er

ques

tionn

aire

: an

alys

is p

lan

not

repo

rted

Colle

ge c

aree

r ce

nter

s w

ere

the

leas

t lik

ely

sour

ce fo

r in

form

atio

n an

d su

ppor

t. St

uden

ts w

ere

acut

ely

awar

e of

thei

r lim

itatio

ns in

soc

ial s

ituat

ions

and

the

impa

ct

of th

eir

limita

tions

in th

e w

ork

envi

ronm

ent.

Stud

ents

exp

ress

ed a

nee

d fo

r m

ore

expe

rien

tial l

earn

ing

oppo

rtun

ities

and

a d

esir

e to

gai

n a

bett

er u

nder

stan

ding

of

wha

t acc

omm

odat

ions

they

cou

ld r

eque

st.

Cam

aren

a an

d Sa

rigi

ani15

(2

009)

To a

sses

s th

e po

stse

cond

ary

educ

atio

nal a

spir

atio

ns a

nd

thou

ghts

con

cern

ing

obst

acle

s an

d re

sour

ces

that

sha

pe

educ

atio

nal a

chie

vem

ent

Recr

uite

d th

roug

h a

netw

ork

of c

onta

cts

prov

ided

by

spec

ial e

duca

tion

adm

inis

trat

ors

and

com

mun

ity

supp

ort g

roup

s: 2

1 yo

uth

with

ASD

or

AS,

age

s 12

–19

y; 2

0 m

othe

rs; a

nd

13 fa

ther

s

Face

-to-fa

ce

inte

rvie

ws

with

op

en- a

nd c

lose

-en

ded

ques

tions

: co

nten

t ana

lysi

s

Both

ado

lesc

ents

and

thei

r pa

rent

s ha

ve c

lear

pos

tsec

onda

ry e

duca

tiona

l goa

ls b

ut

have

sig

nific

ant c

once

rns

abou

t the

rea

dine

ss o

f pos

tsec

onda

ry in

stitu

tions

to m

eet

the

adol

esce

nts’

nee

ds. K

ey m

embe

rs m

ust b

e tr

aine

d an

d cl

earl

y id

entifi

ed a

s a

reso

urce

for

stud

ents

. Spe

cific

soc

ial s

uppo

rts

need

to b

e bu

ilt in

to th

e liv

es o

f st

uden

ts w

ith A

SD.

Chea

k-Za

mor

a an

d Te

ti16

(201

5)

To e

xam

ine

the

heal

th c

are

tran

sitio

n ex

peri

ence

s of

you

th

with

ASD

and

thei

r ca

regi

vers

Flye

rs p

oste

d in

clin

ics

and

mai

lers

w

ere

sent

to a

ddre

sses

from

clin

ic

part

icip

ant l

ists

ervs

: 13

yout

h w

ith

ASD,

age

s 15

–22

y, a

nd 1

9 ca

regi

vers

Sem

istr

uctu

red

focu

s gr

oups

: the

mat

ic

anal

ysis

Pare

nts’

dis

cuss

ion

emph

asiz

ed th

e lo

ss o

f the

rel

atio

nshi

p w

ith p

rovi

ders

, the

lack

of

supp

ort i

n tr

ansi

tioni

ng fr

om p

edia

tric

to a

dult

care

, pro

vide

rs’ l

ack

of k

now

ledg

e ab

out A

SD, a

nd c

once

rns

abou

t los

ing

guar

dian

ship

. You

th e

mph

asiz

ed th

eir

conf

usio

n an

d an

xiet

y ar

ound

med

ical

pro

vide

rs’ r

ole,

esp

ecia

lly in

the

tran

sitio

n to

ad

ulth

ood,

and

man

agin

g th

eir

med

ical

live

s in

depe

nden

tly.

Chea

k-Za

mor

a et

al17

(20

15)

To e

xam

ine

the

soci

al, e

duca

tiona

l, an

d vo

catio

nal n

eeds

of y

outh

w

ith A

SD d

urin

g th

eir

tran

sitio

n in

to a

dulth

ood

Flye

rs p

oste

d in

clin

ics

and

mai

lers

w

ere

sent

to a

ddre

sses

from

clin

ic

part

icip

ant l

ists

ervs

: 13

yout

h w

ith

ASD,

age

s 15

–22

y, a

nd 1

9 ca

regi

vers

Sem

istr

uctu

red

focu

s gr

oups

: gro

unde

d th

eory

Both

car

egiv

ers

and

yout

h ex

peri

ence

d fe

ar a

nd a

nxie

ty a

bout

tran

sitio

ning

. Unm

et

serv

ice

need

s w

ere

high

, lea

ving

car

egiv

ers

stru

gglin

g to

fill

gaps

. Mos

t car

egiv

ers

and

yout

h re

port

ed la

ckin

g in

divi

dual

ized

ser

vice

s. C

areg

iver

s fa

ced

diffi

culty

in

mot

ivat

ing

yout

h an

d cr

eatin

g op

port

uniti

es fo

r ed

ucat

ion

and

empl

oym

ent.

Alth

ough

you

th h

ave

futu

re g

oals

, the

y w

ere

unaw

are

of th

e st

eps

need

ed to

ac

com

plis

h th

em a

nd w

ere

hesi

tant

to ta

lk to

car

egiv

ers.

Giar

elli

and

Fish

er18

(2

013)

To d

escr

ibe

the

mov

emen

t ou

t of s

econ

dary

sch

ool t

o in

depe

nden

t liv

ing

or h

ighe

r ed

ucat

ion

Thir

teen

you

th w

ith A

S, a

ges

18–2

3 y;

13

par

ents

; 5 h

igh

scho

ol te

ache

rs; 5

hi

gh s

choo

l tea

cher

s w

ho in

stru

cted

so

meo

ne w

ith A

SD; a

nd 5

em

ploy

ers

who

hav

e hi

red

or s

uper

vise

d in

divi

dual

s in

a c

ompa

ny o

r bu

sine

ss

in th

e ar

ea

Audi

otap

ed in

terv

iew

s:

cons

tant

co

mpa

riso

n,

grou

nded

theo

ry,

and

sym

bolic

in

tera

ctio

nism

The

core

psy

chos

ocia

l pro

blem

of t

rans

ition

ing

to th

e co

mm

unity

is th

e ne

ed to

hav

e a

stea

dy li

fest

yle.

Ado

lesc

ents

, with

the

supp

ort o

f par

ents

, tea

cher

s, a

nd s

ympa

thet

ic

empl

oyer

s, s

olve

d th

is p

robl

em u

sing

3 p

sych

osoc

ial p

roce

sses

: str

uctu

ring

(ie

, the

pl

anne

d re

orga

niza

tion

of s

ituat

iona

l fac

tors

to p

ositi

vely

influ

ence

the

adol

esce

nt’s

ab

ility

to tr

ansi

tion)

, anc

hori

ng (

ie, t

he a

ttac

hmen

t to

anot

her

pers

on a

s th

e so

urce

of

sec

urity

, sta

bilit

y, a

nd p

erso

nal c

onne

ctio

n), a

nd e

mba

rkin

g (i

e, m

ovin

g un

der

one’

s ow

n po

wer

in th

e di

rect

ion

of a

sel

f-ide

ntifi

ed, r

ealis

tic g

oal)

.Gi

arel

li et

al19

(2

013)

To e

xam

ine

the

expe

ctat

ions

, fa

cilit

ator

s of

, and

bar

rier

s to

at

tend

ing

colle

ge, v

ocat

iona

l tr

aini

ng, o

r fin

ding

pai

d em

ploy

men

t

Recr

uite

d th

roug

h 2

maj

or s

uppo

rt

netw

orks

that

ser

ved

peop

le w

ith A

S:

16 y

outh

with

AS,

age

s 18

–23

y

In-d

epth

, se

mis

truc

ture

d,

tele

phon

e in

terv

iew

s w

ith

a de

mog

raph

ic

ques

tionn

aire

: th

emat

ic c

onte

nt

anal

ysis

Perc

eive

d ba

rrie

rs w

ere

as fo

llow

s: s

elf-a

sses

sed

beha

vior

al p

robl

ems

(ie,

the

inab

ility

to s

ocia

lize

com

fort

ably

, “ge

ttin

g st

uck,

” an

d th

e in

abili

ty to

mak

e ca

sual

co

nver

satio

n); s

elf-a

sses

sed,

ass

ocia

ted

feat

ures

(ie

, lim

ited

atte

ntio

n sp

an a

nd

focu

s, a

nxie

ty, a

nd u

nsta

ble

moo

d an

d m

eltd

owns

); ot

her

pers

onal

fact

ors

(ie,

pe

rcei

ved

low

sel

f-im

age,

diffi

culti

es in

mot

or c

ontr

ol, a

nd la

ck o

f mot

ivat

ion)

; and

in

stitu

tiona

l fac

tors

(ie

, infl

exib

ility

of t

he e

nvir

onm

ent,

inad

equa

te o

rien

tatio

n fo

r an

exp

erie

nce,

and

co-

wor

ker

nega

tivity

). Br

idge

s to

faci

litat

e th

e tr

ansi

tion

wer

e as

follo

ws:

acc

omm

odat

ions

in th

e co

mm

unity

, cog

nitiv

e ab

ilitie

s, p

erso

nal q

ualit

ies

and/

or s

tren

gths

, and

men

tor

qual

ities

.Go

bbo

and

Shm

ulsk

y20

(201

4)

To id

entif

y fa

culty

vie

wpo

ints

on

the

acad

emic

str

engt

hs

and

wea

knes

ses

of c

olle

ge

stud

ents

with

ASD

and

effe

ctiv

e in

stru

ctio

nal p

ract

ices

for

them

Facu

lty r

ecru

ited

thro

ugh

a un

iver

sity

th

at s

erve

s pe

ople

with

ASD

: 18

facu

lty w

ho h

ave

taug

ht a

t lea

st 1

–2

stud

ents

with

ASD

Seve

n fo

cus

grou

ps:

anal

ysis

pla

n no

t re

port

ed

Resu

lts w

ere

grou

ped

into

3 b

road

cat

egor

ies:

aca

dem

ic c

halle

nges

for

stud

ents

with

AS

D (i

e, s

ocia

l ski

ll de

ficits

, cri

tical

-thin

king

cha

lleng

es, a

nd a

nxie

ty),

acad

emic

st

reng

ths

(ie,

pas

sion

ate

inte

rest

s, d

esir

e to

be

righ

t, an

d ad

here

nce

to r

ules

), an

d pr

omis

ing

inst

ruct

iona

l app

roac

hes

(ie,

pro

vide

str

uctu

re a

nd a

tten

d to

the

emot

iona

l clim

ate)

.



Auth

or (

Date

)Ai

ms

Recr

uitm

ent a

nd S

ampl

e Ch

arac

teri

stic

sDa

ta C

olle

ctio

n an

d An

alys

isKe

y Fi

ndin

gs

Hagn

er a

nd

Coon

ey21

(2

005)

To lo

cate

indi

vidu

als

with

au

tism

who

wer

e su

cces

sful

ly

empl

oyed

at j

obs

in th

e co

mm

unity

and

beg

in to

iden

tify

fact

ors

that

con

trib

uted

to th

eir

succ

ess

Com

mun

ity r

ehab

ilita

tion

serv

ice

prov

ider

org

aniz

atio

ns a

nd p

aren

t su

ppor

t gro

ups

for

peop

le w

ith A

SD

iden

tified

suc

cess

ful c

ases

for

the

rese

arch

ers:

14

supe

rvis

ors,

11

co-w

orke

rs, a

nd 9

job

coac

hes

or

disa

bilit

y ag

ency

sta

ff pe

rson

.

Sem

istr

uctu

red

inte

rvie

ws

and

10 p

artic

ipan

t ob

serv

atio

ns:

anal

ytic

indu

ctio

n

Supe

rvis

ors

eval

uate

d th

eir

empl

oyee

s hi

ghly

. Sup

ervi

sory

acc

omm

odat

ion

stra

tegi

es

that

wer

e co

mm

only

ass

ocia

ted

with

suc

cess

ful s

uper

visi

on in

clud

ed m

aint

aini

ng

a co

nsis

tent

sch

edul

e an

d se

t of j

ob r

espo

nsib

ilitie

s, u

sing

org

aniz

ers

to s

truc

ture

th

e jo

b, r

educ

ing

idle

or

unst

ruct

ured

tim

e, b

eing

dir

ect w

hen

com

mun

icat

ing

with

th

e em

ploy

ee, a

nd p

rovi

ding

rem

inde

rs a

nd r

eass

uran

ces.

Sup

ervi

sors

bel

ieve

d th

at th

e as

sist

ance

that

the

indi

vidu

al r

ecei

ved

from

a r

ehab

ilita

tion

agen

cy w

as

criti

cal t

o su

cces

sful

em

ploy

men

t.He

dges

et a

l22

(201

4)To

ana

lyze

mul

tiple

sta

keho

lder

pe

rspe

ctiv

es o

n ch

alle

nges

im

pact

ing

the

succ

ess

of

stud

ents

with

ASD

in h

igh

scho

ol

E-m

ails

to li

stse

rvs

of c

omm

unity

or

gani

zatio

ns a

nd u

nive

rsity

ed

ucat

ion

and

rela

ted

depa

rtm

ents

, di

stri

butio

n of

flye

rs to

loca

l bu

sine

sses

, and

sno

wba

ll sa

mpl

ing

thro

ugh

targ

eted

con

tact

with

sch

ool

autis

m s

peci

alis

ts in

are

a hi

gh

scho

ols:

5 a

dults

with

ASD

, age

s 15

–40

y; 1

0 pa

rent

s; a

nd 2

6 sc

hool

pe

rson

nel

Focu

s gr

oups

: ana

lysi

s pl

an n

ot r

epor

ted

Thre

e th

emes

dem

onst

rate

the

mis

alig

nmen

t tha

t exi

sts

betw

een

the

natu

re o

f hi

gh s

choo

l and

the

need

s of

stu

dent

s w

ith A

SD a

s th

ey p

repa

re fo

r su

cces

s in

po

stse

cond

ary

envi

ronm

ents

: (1)

inco

nsis

tenc

ies,

man

y of

whi

ch a

re in

trin

sic

to

the

seco

ndar

y en

viro

nmen

t; (2

) di

fficu

lties

with

inte

rper

sona

l con

nect

ions

; and

(3)

kn

owle

dge

and/

or p

roce

ss b

reak

dow

ns.

Hilli

er a

nd

Galiz

zi23

(2

014)

To c

ondu

ct a

n in

itial

inve

stig

atio

n in

to th

e em

ploy

men

t out

com

es

and

expe

rien

ces

of y

oung

adu

lts

on th

e au

tism

spe

ctru

m

Flye

rs s

ent t

o ta

rget

ed r

efer

rals

mad

e fr

om o

rgan

izat

ions

ser

ving

peo

ple

with

ASD

and

thei

r fa

mili

es:1

9 pa

rent

s an

d/or

gua

rdia

ns o

f you

ng

adul

ts, m

ean

age

23 y

, on

the

autis

m

spec

trum

; and

17

youn

g ad

ults

, age

s 19

–28

y, o

n th

e au

tism

spe

ctru

m

Mai

l sur

vey

with

ope

n-

and

clos

e-en

ded

ques

tions

: ana

lysi

s pl

an n

ot r

epor

ted

Find

ings

dem

onst

rate

that

thos

e w

ith A

SD h

ave

diffi

culty

find

ing

empl

oym

ent,

typi

cally

fin

d em

ploy

men

t thr

ough

peo

ple

they

kno

w, a

re p

aid

low

wag

es, a

nd a

re li

kely

to

wor

k in

par

t-tim

e, e

ntry

-leve

l pos

ition

s. G

ener

ally

, how

ever

, peo

ple

with

ASD

co

mm

ent f

avor

ably

on

thei

r w

ork

envi

ronm

ents

. Man

y al

so r

ecei

ve c

onsi

dera

ble

supp

ort f

rom

thei

r fa

mili

es.

Kuch

arcz

yk

et a

l24 (

2015

)To

exp

lore

the

cont

exts

, co

nsid

erat

ions

, and

co

mpl

exiti

es a

ssoc

iate

d w

ith

deliv

erin

g in

terv

entio

ns to

m

eet t

he n

eeds

of h

igh

scho

ol

stud

ents

with

ASD

from

the

vant

age

poin

t of p

ract

ition

ers,

pa

rent

s, a

nd o

ther

key

st

akeh

olde

rs

Flye

rs a

nd e

-mai

ls s

ent t

o AS

D ad

voca

cy g

roup

s, s

ervi

ce p

rovi

ders

, sc

hool

s, a

nd e

-mai

ling

lists

for

the

univ

ersi

ties

and

ASD-

spec

ific

grou

ps,

dire

ct c

onta

cts

and

flyer

s pl

aced

in

com

mun

ity lo

catio

ns: 4

7 pa

rent

s or

ca

regi

vers

of y

outh

age

s 10

–29

y; 6

in

divi

dual

s w

ith A

SD a

ges,

18–

40 y

; 45

educ

ator

s; 3

0 ad

min

istr

ator

s; a

nd 2

4 se

rvic

e pr

ovid

ers

Twen

ty-e

ight

focu

s gr

oups

acr

oss

4 st

ates

: con

stan

t-co

mpa

rativ

e ap

proa

ch

Part

icip

ants

em

phas

ized

the

inad

equa

cy o

f pre

vaili

ng in

terv

entio

n ap

proa

ches

in

seco

ndar

y sc

hool

s, u

nder

scor

ed th

e im

port

ance

of a

tten

ding

to th

e fe

asib

ility

of

and

alig

nmen

t with

the

dive

rse

need

s of

stu

dent

s w

ith A

SD, a

nd s

tres

sed

the

need

fo

r br

oade

r aw

aren

ess

and

trai

ning

effo

rts

surr

ound

ing

autis

m.

Kuhl

thau

et a

l25

(201

4)To

iden

tify

the

curr

ent s

trat

egie

s th

at A

SD-e

xper

t ped

iatr

ic

prov

ider

s ar

e us

ing

or

desi

gnin

g to

hel

p fa

cilit

ate

the

tran

sitio

n to

adu

lt ca

re

Sixt

een

site

s w

ere

recr

uite

d th

roug

h au

tism

trea

tmen

t net

wor

ks in

the

Unite

d St

ates

and

Can

ada.

The

per

son

who

was

the

mos

t kno

wle

dgea

ble

abou

t tra

nsiti

on a

nd a

utis

m w

as

aske

d to

com

plet

e th

e in

terv

iew

: 5

phys

icia

ns, 5

psy

chol

ogis

ts, 7

soc

ial

wor

kers

and

/or

care

coo

rdin

ator

s,

and

2 re

gist

ered

nur

ses

and/

or n

urse

pr

actit

ione

rs.

Tele

phon

e in

terv

iew

: fr

amew

ork

appr

oach

Inte

rven

tion

stra

tegi

es th

at a

re c

urre

ntly

bei

ng u

sed

incl

ude

the

follo

win

g: p

rovi

ding

fa

mili

es w

ith w

ritt

en m

edic

al s

umm

arie

s to

giv

e to

adu

lt pr

ovid

ers,

com

pilin

g lis

ts o

f ava

ilabl

e ad

ult p

rovi

ders

or

com

mun

ity r

esou

rces

, coo

rdin

atin

g ca

re a

nd

com

mun

icat

ion

betw

een

indi

vidu

al p

edia

tric

and

adu

lt pr

ovid

ers,

mak

ing

tran

sitio

n-sp

ecifi

c ap

poin

tmen

ts, a

nd u

sing

che

cklis

ts to

trac

k tr

ansi

tion

proc

ess.

Oth

er

inte

rven

tion

stra

tegi

es th

at w

ere

iden

tified

as

need

ed b

ut n

ot c

urre

ntly

in p

ract

ice

wer

e fo

cuse

d on

edu

catio

n an

d tr

aini

ng (

eg, i

nfor

mat

iona

l wor

ksho

ps to

trai

n fa

mili

es a

nd y

outh

abo

ut tr

ansi

tioni

ng)

and

a tr

ansi

tion

cent

er w

here

all

serv

ices

co

uld

be c

oord

inat

ed in

1 p

lace

.

TABL

E 1

Cont

inue

d


ANDERSON et alS322

Auth

or (

Date

)Ai

ms

Recr

uitm

ent a

nd S

ampl

e Ch

arac

teri

stic

sDa

ta C

olle

ctio

n an

d An

alys

isKe

y Fi

ndin

gs

Mor

riso

n et

al26

(2

009)

To e

xplo

re p

aren

t per

cept

ions

of

the

supp

orts

and

ac

com

mod

atio

ns th

at c

olle

ge-

boun

d st

uden

ts w

ith A

S ne

ed a

t th

e po

stse

cond

ary

leve

l to

be

succ

essf

ul

Recr

uite

d th

roug

h a

netw

ork

of

prof

essi

onal

s as

soci

ated

with

a lo

cal

chap

ter

of th

e Au

tism

Soc

iety

of

Amer

ica:

4 p

aren

ts o

f you

ng a

dults

w

ith A

S, a

ges

8–16

y

Focu

s gr

oups

: ana

lysi

s pl

an n

ot r

epor

ted

Pare

nts

reco

mm

ende

d th

at c

olle

ges

mat

ch s

tude

nts

with

acc

omm

odat

ing

prof

esso

rs

and

prov

ide

a pr

ofes

sion

al in

the

colle

ge s

tude

nt s

ervi

ces

prog

ram

to a

dvoc

ate

for

thei

r ch

ildre

n. P

aren

ts d

iscu

ssed

the

poss

ibili

ty th

at a

ltern

ativ

e ro

utes

to a

4-y

co

llege

(eg

, com

mun

ity c

olle

ge)

may

be

the

best

ave

nue

for

thei

r ch

ildre

n. P

aren

ts

agre

ed th

at th

eir

child

ren

wou

ld c

ontin

ue to

req

uire

hig

her

leve

ls o

f par

enta

l in

volv

emen

t and

sup

port

in c

olle

ge, p

artic

ular

ly w

ith d

aily

livi

ng s

kills

.Nu

ehri

ng a

nd

Sitli

ngto

n27

(200

3)

To s

ee h

ow th

e tr

ansi

tion

proc

ess

in p

lace

was

wor

king

and

w

heth

er it

was

doi

ng a

ll th

at

it co

uld

for

adol

esce

nts

with

au

tism

Four

you

ng a

dults

with

ASD

age

s 19

–22

y an

d 3

voca

tiona

l ser

vice

pro

vide

rsAu

dio-

reco

rded

in

terv

iew

s an

d cl

assr

oom

ob

serv

atio

ns in

by

a te

ache

r; in

terv

iew

s at

3 a

dult

serv

ice

prov

ider

s’ fa

cilit

ies:

an

alys

is p

lan

not

repo

rted

Succ

essf

ul a

spec

ts o

f adu

lt pr

ovid

ers

incl

uded

the

follo

win

g: th

e em

ploy

men

t of

know

ledg

eabl

e tr

ansi

tion

spec

ialis

ts, t

he v

arie

ty o

f cho

ices

that

stu

dent

s an

d th

eir

fam

ilies

had

in a

geo

grap

hic

area

, and

the

use

of a

sses

smen

t dat

a in

1 o

f the

ag

enci

es. A

reas

of i

mpr

ovem

ent i

nclu

ded

the

follo

win

g: in

crea

sed

educ

atio

n of

hig

h sc

hool

teac

hers

and

sta

ff ab

out t

he a

dult

voca

tiona

l ser

vice

pro

vide

rs; t

he u

se o

f as

sess

men

t dat

a th

roug

hout

the

tran

sitio

n; in

crea

sed

com

mun

icat

ion

amon

g th

e st

uden

t, hi

s or

her

fam

ily, t

he s

choo

l, an

d th

e ad

ult v

ocat

iona

l ser

vice

pro

vide

r; a

nd

alig

ned

prog

ram

min

g be

twee

n hi

gh s

choo

l and

the

stud

ent’s

futu

re e

nvir

onm

ents

.

Peña

and

Ko

cur28

(2

013)

To e

xplo

re th

e ex

peri

ence

s of

pa

rent

s as

thei

r st

uden

ts

with

ASD

tran

sitio

ned

to a

co

mm

unity

col

lege

Recr

uitm

ent e

-mai

l sen

t to

univ

ersi

ty

supp

ort s

ervi

ces

offic

es, c

linic

ians

w

ho w

ork

with

clie

nts

with

ASD

, in

addi

tion

to a

utis

m s

uppo

rt g

roup

s an

d so

cial

net

wor

king

site

s: 1

8 pa

rent

s of

you

ng a

dults

with

AS,

au

tism

, or

PDD-

NOS

who

att

ende

d co

mm

unity

col

lege

Audi

o-re

cord

ed

inte

rvie

ws:

co

nsta

nt-

com

pari

son

anal

ysis

met

hod

Pare

nts

repo

rted

pla

ying

2 p

redo

min

ant r

oles

: (1)

coa

chin

g st

uden

ts to

nav

igat

e ca

mpu

s se

rvic

es a

nd (

2) e

ncou

ragi

ng s

tude

nts

to p

artic

ipat

e in

col

lege

mor

e in

depe

nden

tly. T

wo

maj

or c

halle

nges

em

erge

d fr

om p

aren

t rep

orts

: (1)

nav

igat

ing

the

Fede

ral E

duca

tiona

l Rig

hts

and

Priv

acy

Act a

nd (

2) fi

ndin

g su

ppor

tive

facu

lty.

Smith

29 (

2007

)To

exa

min

e th

e ne

eds

of s

tude

nts

with

AS

and

the

avai

labi

lity

of

post

seco

ndar

y se

rvic

es a

nd

acco

mm

odat

ions

Mai

led

surv

eys

to s

taff

of p

osts

econ

dary

di

sabi

lity

serv

ices

offi

ces

who

are

m

embe

rs o

f the

Ass

ocia

tion

on H

ighe

r Ed

ucat

ion

and

Disa

bilit

y: 2

9 st

aff

mem

bers

in d

isab

ility

ser

vice

s of

fices

in

sec

onda

ry in

stitu

tions

Web

-bas

ed s

urve

y w

ith

clos

e- a

nd o

pen-

ende

d qu

estio

ns:

anal

ysis

pla

n no

t re

port

ed

Acco

mm

odat

ions

at t

he p

osts

econ

dary

leve

l do

not t

ake

into

con

side

ratio

n th

e sp

ecifi

c ne

eds

of s

tude

nts

with

AS.

Res

pond

ents

rep

orte

d a

need

for

assi

stan

ce in

the

area

s of

soc

ial s

kills

, int

ervi

ewin

g sk

ills,

wor

k et

hic,

and

soc

ial b

ehav

ior.

War

field

et a

l30

(201

5)To

und

erst

and

prof

essi

onal

hea

lth

prov

ider

s’ e

xper

ienc

es in

pr

ovid

ing

prim

ary

med

ical

car

e to

peo

ple

with

ASD

, the

trai

ning

th

ey r

ecei

ved,

the

trai

ning

they

la

cked

, and

rec

omm

enda

tions

fo

r en

cour

agin

g m

ore

phys

icia

ns to

ser

ve th

is

popu

latio

n

Recr

uite

d th

roug

h th

e Au

tism

Tre

atm

ent

Netw

ork

and

New

Eng

land

Inde

x: 9

ph

ysic

ians

and

1 n

urse

who

act

ivel

y pr

ovid

e m

edic

al c

are

to a

dults

with

AS

D

Tele

phon

e-ba

sed,

st

ruct

ured

in

terv

iew

gui

de:

fram

ewor

k ap

proa

ch

Chal

leng

es a

t pro

vidi

ng c

are

wer

e id

entifi

ed a

t the

sys

tem

leve

l (eg

, the

ava

ilabi

lity

of

serv

ices

and

/or

prov

ider

s), t

he p

ract

ice

and

prov

isio

n le

vels

(eg

, org

aniz

ing

patie

nt

care

, the

phy

sica

l env

iron

men

t, an

d fa

mily

invo

lvem

ent)

, and

the

trai

ning

and

ed

ucat

ion

leve

ls (

eg, p

hysi

cian

kno

wle

dge

of A

SD).

Syst

ems-

leve

l sol

utio

ns in

clud

ed

finan

cial

ince

ntiv

es fo

r ph

ysic

ians

. Pra

ctic

e- a

nd p

rovi

sion

-leve

l sol

utio

ns in

clud

ed

impr

ovin

g co

mm

unic

atio

n am

ong

phys

icia

ns a

nd p

rovi

ding

loca

lized

list

s of

ser

vice

pr

ovid

ers.

Tea

chin

g- a

nd e

duca

tion-

leve

l sol

utio

ns in

clud

ed tr

aini

ng p

rovi

ders

and

of

fice

staf

f and

con

nect

ing

phys

icia

ns to

exi

stin

g pr

ogra

ms

and

serv

ices

.

AS, A

sper

ger

synd

rom

e; P

DD-N

OS, p

erva

sive

dev

elop

men

tal d

isor

der

not o

ther

wis

e sp

ecifi

ed.

TABL

E 1

Cont

inue

d



male participants was 86%. Although the ages of the 121 participants with autism ranged from 12 to 43 years, roughly 89% of them were ≤26 years old. Race was reported in only 5 of these studies, 14, 18, 19, 22, 24 and the mean proportion of white participants with autism was 81%.

Qualitative data consisted primarily of interviews* or focus groups16, 17, 20, 22, 24, 26 with participants. The approach and/or methods used to analyze the data, which included grounded theory, 17, 18 analytic induction, 21 content analysis, 15 thematic analysis, 16, 19 the framework approach, 25, 30 and the constant-comparative method, were explicitly named in 10 studies.15, 24, 28

Key Findings

We organized our analysis to identify the major barriers to and facilitators of supporting optimal postsecondary outcomes.

Barrier 1: Poor Person-Environment Fit

Person-environment fit refers to the match between the developmental needs of individuals and the opportunities afforded to them by their surrounding environments, including high school, workplace, college, and community service systems.31 Findings from this review reveal that postsecondary settings often do not address the unique needs of individuals on the autism spectrum. Although many young adults, 14, 15 their parents, 16, 17, 22 and professionals, 20, 24, 29, 30 emphasized the need for settings to appropriately tailor supports and accommodate the social needs of young adults with autism, many felt this was lacking.14 – 17, 24, 29 For example, parents described the formal accommodations offered in postsecondary education as less individualized and more limited than

* Refs 16, 17, 20, 22, 24, 26, 27, 29, 30

those provided in high school.15, 26, 28 Parents15, 28 and young adults15 were concerned that college faculty and staff had limited understanding about autism and were unaware of the unique challenges faced by students on the spectrum.

Stakeholders in 4 studies described a mismatch between individual skills and employment.17, 19, 23, 27 Parents and young adults believed that negative social views about autism led employers to underestimate employees’ capabilities.17 Although employers described people with autism as dependable, punctual, conscientious, and consistent, 21 some parents felt that their children were steered toward jobs that were underpaid, uninteresting, and for which they may be overqualified.17,

23 Young adults also felt that there was a mismatch between their individual skills and work demands, reporting that they had jobs rather than careers, and were unable to find work related to their college degrees.23 They felt they would fare better at work if their individual talents matched employer needs.19

Facilitator 1: Individualized Supports and Environmental Modifications

Researchers in several studies recommended that young adults be matched with supportive people in high school, 17 college, 15 and the workplace.21, 23 For example, parents recommended that colleges could make efforts to pair individuals with understanding roommates15 and faculty26 who might serve as supportive advocates and help them navigate social and academic challenges. Parents also recommended that colleges provide opportunities for young adults to meet other people with autism.15 Supervisors of employees with autism reported that having 1 or 2 designated co-workers to help the young adult learn tasks and social rules helped with their success in

the workplace.21 The supervisors also suggested that employers could improve the awareness of autism in the workplace by encouraging co-workers to initiate conversations with employees who are on the autism spectrum.21

Young adults reported that they are likely to be more successful in working environments that accommodate their individual needs and foster a supportive culture.19, 23 They preferred management styles that practiced clear communication (ie, explaining responsibilities and offering constructive feedback), provided individual accommodations (ie, flexible scheduling, extra time to learn and complete tasks, and additional training), and offered emotional support.19 A young adult described the importance of feeling accepted by employers and co-workers, stating, “They have to know that everybody has a place in this world and that being different does not mean [people with autism] are not good people.” 19 Parents also expressed a preference for managers who had previous experience working with people with ASD, were tolerant, applied strengths-based management, and considered the needs of the employee.23

College faculty20 and employers and/or supervisors18, 21 also provided examples of the types of accommodations they could make to facilitate person-environment fit. College professors reported the benefits of allowing students to focus on their specific interests, work individually rather than in groups, clearly communicate their expectations, and provide direct feedback to students.20 Supervisors of employees on the autism spectrum recommended that employers give specific directions and ask the employees to repeat back what they said to verify that they understood.21 One employer stated, “I have learned to step back and allow my workers who have special needs to do things


ANDERSON et alS324

their own way, whenever possible, then we’re both more likely to be pleased with the outcomes.” 18 Parents also described several strategies that were employed in their children’s workplaces, such as structuring an individual’s routine on the basis of their preferences and needs, having a private space to go to when feeling overwhelmed, or reducing the length of unstructured time.23

Parents and young adults also recommended modifying the physical environment (ie, lighting, sound, and the distance of chairs and desks) to better accommodate the sensory challenges of people with autism.18 A health care professional acknowledged the importance of lessening patients’ waiting time, stating, “The most important thing is to try to create a comfortable environment [and] to move things along more efficiently; it makes a big difference that folks don’t have to wait because they don’t always understand why they are waiting.” 30

Barrier 2: Uncertainty About Changing Parent Roles

Many parents reported having difficulty navigating their role in their children’s transition. Many parents of young adults with autism wanted their children to gain independence and adopt adult roles and responsibilities15, 16 yet were aware that the social and functional challenges of autism may hinder that process.15, 28 Therefore, parents often continued to perform daily living tasks, such as cooking, managing finances, and making appointments, for their children.16, 17, 23, 26, 28

Although parents reported feeling overwhelmed by the number of responsibilities they had, 15, 17, 23, 28 many felt that their close involve-ment was necessary, especially given the lack of available supports.26, 28 In 5 studies, parents described feeling a responsibility to educate support professionals about their children and ASD more

broadly.15 – 17, 22, 28 High school personnel, 22 college staff, 29 and adult health care providers15, 25 also reported a lack of professionals who have experience teaching and caring for adults on the autism spectrum.

In contrast to parental beliefs that a high level of involvement is sometimes necessary, some professionals argued that parental involvement hindered young adults in developing life skills and greater independence. Some parents reported feeling pushback from college administrators to play a smaller role in their children’s daily lives at college.28 One parent of a college student with autism said, “The professors don’t want to talk to me. And I understand all the privacy issues and all that stuff. But even if [my son] signs off, they don’t want to deal with you.” 28

Facilitator 2: Gradual Transition to Diverse Supports

Parents reported using a variety of strategies to gradually increase their children’s independence in college, such as asking the directors of college disability programs to include them on e-mails or attending their children’s meetings with college counselors but purposefully taking a less active role.28 In 5 studies, parents and young adults reported that sharing some responsibilities with other members of the community, such as peer mentors, 17, 19, 26 teachers, 18 or key personnel within organizations, 15 allowed parents to assume a smaller role and facilitate their children’s independence without removing all sources of support. For example, some parents suggested that colleges provide their children with a counselor or someone to “check in” on them to help ease the transition and build a sense of security.15 Similarly, other parents suggested that colleges appoint an advocate within their student support services program to act as the “advisor and go-between” for young adults and their professors.26

Some parents recommended that job coaches teach life skills in addition to employment skills.28

Structured supports, such as vocational services (and job coaches in particular), played a critical role in improving young adults’ employment experiences. For example, parents reported that job coaches provided a sense of familiarity until the employer and young adult got to know one another.16 Employers reported that job coaches helped them supervise their employees by sharing relevant information about their employees’ medical needs.21 Some supervisors also said they would be unable to support their employees with autism if the community vocational provider was not there to help supervise them.21

Barrier 3: Lack of Comprehensive or Integrated Services

Studies revealed the need for services to help families and young adults prepare for and understand the transition process. The drastic decline in the availability of services after high school was a primary concern of parents and young adults.15 – 17 Many were not sure which resources were available in adulthood or where they could turn to for guidance.14– 16 For example, young adults often have to switch from a pediatrician to an adult health care provider after they turn 18 years old. This change may be abrupt, with little time for the young adult to adjust to a new provider.16 Although some young adults felt that it was important to understand how their medical care would impact them in adulthood, 16 findings reveal that parents and young adults have little access to formal health care transition planning and have difficulty finding adult health care professionals with experience treating patients with ASD.16, 25, 30

The need for training and professional development in ASD was



mentioned in 7 studies.15, 19, 22, 24– 26, 30 However, high school teachers22, 24 and health care professionals25 felt they did not have the needed support from their respective institutions to learn about autism. For example, both reported feeling overworked and did not have the time to attend autism-specific training.22, 25 Health care professionals felt that they were hindered in their efforts to facilitate a successful transition because health care providers are not reimbursed for the additional time it takes to care for patients with complex health needs because of insurance reimbursement policies.30

Facilitator 3: Information Sharing and Collaboration

Health care professionals recommended educational resources for families, such as family workshops25 or classes30 and lists of adult physicians in the community who are knowledgeable about ASD.30 To help orient young adults to postsecondary settings, parents and health care professionals recommended that young adults meet with college faculty15 and adult physicians16 before making the transition. Young adults also suggested that experiential learning opportunities, such as internships or attending a college lecture, could help ease their anxiety around transitioning.14, 15, 19

According to high school educators22 and adult health care providers, 25 documentation that describes the young adult’s history, needs, and strengths can assist adult service providers in better addressing the young adult’s needs.22, 25 Health care providers recommended teleconferencing between pediatric and adult physicians and using checklists to help patients manage their own health care and better communicate with providers.25 Stakeholders also suggested that formal training for college faculty, 15, 29

co-workers and/or employers, 19 and medical students and residents30 can also raise awareness of working with individuals with ASD.

IMPLICATIONS FOR POLICY AND PRACTICE

Existing interventions are often focused exclusively on teaching skills for independence. Findings from many of the studies in this review reveal that practitioners should also consider changing aspects of their social and physical environments32, 33 to accommodate young adults’ needs and lessen some of their challenges. These strategies typically involve modifying the social or physical environment at either the individual level (eg, professionals could change the ways in which they communicate with young adults) or the organizational level (eg, colleges could facilitate efforts to increase campus awareness and acceptance of autism). Stakeholders also endorsed efforts to match young adults to understanding people and settings through individualized mentorship programs.15, 17, 21, 26, 28

Although these strategies may help improve the transition experiences of young adults, there are few established social policies or practice guidelines to guide their implementation. Decisions about where to intervene are often based on professionals’ subjective appraisal of need rather than formal assessments, but other factors could be incorporated into protocols. For example, existing employment assessments examine the fit between an individual’s abilities and interests and the requirements of a particular job, but they could also be used to evaluate aspects of the workplace that are not matched well with the sensory needs of young adults with ASD.34, 35

Although stakeholders agreed that young adults with ASD would fare better in flexible and tolerant

environments, existing services are rarely customized to fit the individuals’ unique goals and challenges. Incorporating principles of person-centered planning in adult services and programs may help practitioners tailor supports to the needs of individuals. Person-centered planning is an approach to supporting people with disabilities that emphasizes individual choice and community engagement.36, 37 It is also an interactive process in which young adults, families, service providers, and community members develop solutions to mutually agreed on problems. In addition to facilitating a better fit between the individuals and their environments, person-centered programs also have the potential to increase the capacity for interagency collaboration.38

Policies must also consider the needs of organizations in addition to those of the youth and their families. Specifically, we need to consider systems capacity in relation to coordinating service transitions and sharing information among providers and institutions. The evidence in this review reveals that the delivery of individualized programs is often constrained by the larger systems in which the programs operate. For example, throughout the life course, people with autism are embedded in a network of services that aim to promote stable housing, employment, and education. The structure of these service networks change drastically during transition because the social policies that govern the adult service system are far less comprehensive than those offered in high school.26 Therefore, these policies and practices need to be expanded to adapt to the needs of transition-aged youth and young adults.

LIMITATIONS OF THE REVIEWED RESEARCH STUDIES

We found several limitations to analyzing this set of studies.


ANDERSON et alS326

First, there was not enough information about participants, making comparisons among studies difficult. Few researchers clearly described the characteristics of their samples. Among the few studies in which demographic information was reported, it was clear that overall, samples lacked demographic and socioeconomic diversity. Only 5 studies included indicators of cognition, social skills, or communication ability, 14 – 17, 27 and researchers in 13 studies did not report how participants’ autism diagnoses were verified. Sampling biases may also result in a skewed understanding of the issues we examined. For example, young adults who did not use words to communicate were excluded from the research. Therefore, findings may only be characteristic of the segments of the population represented.

Second, researchers in only 3 studies tailored their methods to fit the unique needs of young adults on the autism spectrum by allowing the young adults to bring an advocate with them to the interview and provided photographs to supplement the questions.14, 16, 17 This could be important because people with ASD may have difficulty linking past experiences to current consequences and processing auditory input.39 As a result, respondents with autism may interpret the interview questions differently from the researcher’s intended meaning. Nicolaidis et al40 have collaborated with people on the autism spectrum to modify consent forms and interview protocols so that they ask present information and ask questions more clearly. These modifications included eliminating ambiguous terms, adding specific examples, and providing definitions for potentially confusing terms. To create more consistency in this line of qualitative research, we recommend that researchers in future studies clearly describe the characteristics of their samples,

document their strategies for verifying diagnoses and eligibility, and report data collection procedures in detail.

CONCLUSIONS

In this review of qualitative studies about young adult transition, we describe efforts to understand the perspectives of stakeholders about the factors that facilitate or impede transition. Many of the strategies described in this review emphasized interventions that change the environment and foster collaborative relationships among professionals, parents, and young adults rather than being focused on modifying individual behavior, which is more typical. These findings reveal the need for and importance of programs that are used to target aspects of familial, organizational, and policy contexts. However, questions remain concerning the feasibility and implementation of such interventions in postsecondary settings.

We identified several factors that may hinder the development of effective interventions, including the large variability of individual support needs, the lack of available support outside the family system, and asynchrony in the goals and expectations among stakeholders. Future researchers should work toward establishing an evidence base that can be used to inform the development of interventions and improve team communication and functioning.

ABBREVIATION

ASD: autism spectrum disorder

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DOI: 10.1542/peds.2016-4300I2018;141;S318Pediatrics

Kristy A. Anderson, Collette Sosnowy, Alice A. Kuo and Paul T. ShattuckStudies

Transition of Individuals With Autism to Adulthood: A Review of Qualitative

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Transition of Individuals With Autism to Adulthood: A Review of Qualitative

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