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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.
abstract
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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
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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)
.
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PEDIATRICS Volume 141, number s4, April 2018 S321
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
by guest on July 1, 2020www.aappublications.org/newsDownloaded from
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
by guest on July 1, 2020www.aappublications.org/newsDownloaded from
PEDIATRICS Volume 141, number s4, April 2018 S323
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
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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
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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.
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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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DOI: 10.1542/peds.2016-4300I2018;141;S318Pediatrics
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