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

Transition of Individuals With Autism to Adulthood: A Review of Qualitative Studies Kristy 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: kaa92@ drexel.edu

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

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

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by guest on May 23, 2020www.aappublications.org/newsDownloaded from

PEDIATRICS Volume 141, number s4, April 2018 S321

Au th

or (

Da te

) Ai

m s

Re cr

ui tm

en t a

nd S

am pl

e Ch

ar ac

te ri

st ic

s Da

ta C

ol le

ct io

n an

d An

al ys

is Ke

y Fi

nd in

Ha gn

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Co on

ey 21

00 5)

To lo

ca te

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vi du

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w ith

tis m

w ho

w er

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em pl

oy ed

a t j

ob s

in th

e co

m m

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b eg

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id en

tif y

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th at

c on

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to th

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su cc

es s

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m un

ity r

eh ab

ili ta

tio n

se rv

ic e

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o rg

an iz

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nd p

ar en

t su

pp or

t g ro

up s

fo r

pe op

le w

ith A

id en

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as es

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rs , a

nd 9

jo b

co ac

he s

di sa

bi lit

y ag

en cy

s ta

ff pe

rs on

Se m

is tr

uc tu

re d

in te

rv ie

w s

an d

10 p

ar tic

ip an

t ob

se rv

at io

ns :

an al

yt ic

in du

ct io

Su pe

rv is

or s

ev al

ua te

d th

ei r

em pl

oy ee

s hi

gh ly

. S up

er vi

so ry

a cc

om m

od at

io n

st ra

te gi

th at

w er

e co

m m

on ly

a ss

oc ia

te d

w ith

s uc

ce ss

fu l s

up er

vi si

on in

cl ud

ed m

ai nt

ai ni

a co

ns is

te nt

s ch

ed ul

e an

d se

t o f j

ob r

es po

ns ib

ili tie

s, u

si ng

o rg

an iz

er s

to s

tr uc

tu re

e jo

b, r

ed uc

in g

id le

o r

un st

ru ct

ur ed

ti m

e, b

ei ng

d ir

ec t w

he n

co m

m un

ic at

in g

w ith

e em

pl oy

ee , a

nd p

ro vi

di ng

r em

in de

rs a

nd r

ea ss

ur an

ce s.

S up

er vi

so rs

b el

ie ve

d th

at th

e as

si st

an ce

th at

th e

in di

vi du

al r

ec ei

ve d

fr om

a r

eh ab

ili ta

tio n

ag en

cy w

cr iti

ca l t

o su

cc es

sf ul

e m

pl oy

m en

t. He

dg es

e t a

l22

(2 01

4) To

a na

ly ze

m ul

tip le

s ta

ke ho

ld er

rs pe

ct iv

es o

n ch

al le

ng es

pa ct

in g

th e

su cc

es s

st ud

en ts

w ith

A SD

in h

ig h

sc ho

E- m

ai ls

to li

st se

rv s

of c

om m

un ity

ga ni

za tio

ns a

nd u

ni ve

rs ity

uc at

io n

an d

re la

te d

de pa

rt m

en ts

, di

st ri

bu tio

n of

fl ye

rs to

lo ca

l bu

si ne

ss es

, a nd

s no

w ba

ll sa

m pl

in g

th ro

ug h

ta rg

et ed

c on

ta ct

w ith

s ch

oo l

au tis

m s

pe ci

al is

ts in

a re

a hi

sc ho

ol s:

5 a

du lts

w ith

A SD

, a ge

s 15

–4 0

y; 1

0 pa

re nt

s; a

nd 2

6 sc

ho ol

rs on

ne l

Fo cu

s gr

ou ps

: a na

ly si

s pl

an n

ot r

ep or

te d

Th re

e th

em es

d em

on st

ra te

th e

m is

al ig

nm en

t t ha

t e xi

st s

be tw

ee n

th e

na tu

re o

f hi

gh s

ch oo

l a nd

th e

ne ed

s of

s tu

de nt

s w

ith A

SD a

s th

ey p

re pa

re fo

r su

cc es

s in

st se

co nd

ar y

en vi

ro nm

en ts

: ( 1)

in co

ns is

te nc

ie s,

m an

y of

w hi

ch a

re in

tr in

si c

th e

se co

nd ar

y en

vi ro

nm en

t; (2

) di

ffi cu

lti es

w ith

in te

rp er

so na

l c on

ne ct

io ns

; a nd

( 3)

ow le

dg e

an d/

or p

ro ce

ss b

re ak

do w

ns .

Hi lli

er a

Ga liz

zi 23

01 4)

To c

on du

ct a

n in

iti al

in ve

st ig

at io

n in

to th

e em

pl oy

m en

t o ut

co m

an d

ex pe

ri en

ce s

of y

ou ng

a du

lts

on th

e au

tis m

s pe

ct ru

Fl ye

rs s

en t t

o ta

rg et

ed r

ef er

ra ls

m ad

e fr

om o

rg an

iz at

io ns

s er

vi ng

p eo

pl e

w ith

A SD

a nd

th ei

r fa

m ili

es :1

9 pa

re nt

s an

d/ or

g ua

rd ia

ns o

f y ou

ad ul

ts , m

ea n

ag e

23 y

, o n

th e

au tis

sp ec

tr um

; a nd

1 7

yo un

g ad

ul ts

, a ge

s 19

–2 8

y, o

n th

e au

tis m

s pe

ct ru

M ai

l s ur

ve y

w ith

o pe

an d

cl os

e- en

de d

qu es

tio ns

: a na

ly si

s pl

an n

ot r

ep or

te d

Fi nd

in gs

d em

on st

ra te

th at

th os

e w

ith A

SD h

av e

di ffi

cu lty

fi nd

in g

em pl

oy m

en t,

ty pi

ca lly

fin

d em

pl oy

m en

t t hr

ou gh

p eo

pl e

th ey

k no

w , a

re p

ai d

lo w

w ag

es , a

nd a

re li

ke ly

w or

k in

p ar

t-t im

e, e

nt ry

-le ve

l p os

iti on

s. G

en er

al ly

, h ow

ev er

, p eo

pl e

w ith

A SD

m m

en t f

av or

ab ly

o n

th ei

r w

or k

en vi

ro nm

en ts

. M an

y al

so r

ec ei

ve c

on si

de ra

bl e

su pp

or t f

ro m

th ei

r fa

m ili

es .

Ku ch

ar cz

et a

l24 (

20 15

) To

e xp

lo re

th e

co nt

ex ts

, co

ns id

er at

io ns

, a nd

m pl

ex iti

es a

ss oc

ia te

d w

ith

de liv

er in

g in

te rv

en tio

ns to

ee t t

he n

ee ds

o f h

ig h

sc ho

st ud

en ts

w ith

A SD

fr om

th e

va nt

ag e

po in

t o f p

ra ct

iti on

er s,

re nt

s, a

nd o

th er

k ey

ak eh

ol de

Fl ye

rs a

nd e

-m ai

ls s

en t t

o AS

D ad

vo ca

cy g

ro up

s, s

er vi

ce p

ro vi

de rs

, sc

ho ol

s, a

nd e

-m ai

lin g

lis ts

fo r

th e

un iv

er si

tie s

an d

AS D-

sp ec

ifi c

gr ou

ps ,

di re

ct c

on ta

ct s

an d

fly er

s pl

ac ed

co m

m un

ity lo

ca tio

ns : 4

7 pa

re nt

s or

re gi

ve rs

o f y

ou th

a ge

s 10

–2 9

y; 6

di vi

du al

s w

ith A

SD a

ge s,

1 8–

40 y

; 4 5

ed uc

at or

s; 3

0 ad

m in

is tr

at or

s; a

nd 2

4 se

rv ic

e pr

ov id

er s

Tw en

ty -e

ig ht

fo cu

s gr

ou ps

a cr

os s

4 st

at es

: c on

st an

t- co

m pa

ra tiv

e ap

pr oa

Pa rt

ic ip

an ts

e m

ph as

iz ed

th e

in ad

eq ua

cy o

f p re

va ili

ng in

te rv

en tio

n ap

pr oa

ch es

se co

nd ar

y sc

ho ol

s, u

nd er

sc or

ed th

e im

po rt

an ce

o f a

tt en

di ng

to th

e fe

as ib

ili ty

o f

an d

al ig

nm en

t w ith

th e

di ve

rs e

ne ed

s of

s tu

de nt

s w

ith A

SD , a

nd s

tr es

se d

th e

ne ed

r br

oa de

r aw

ar en

es s

an d

tr ai

ni ng

e ffo

rt s

su rr

ou nd

in g

au tis

m .

Ku hl

th au

e t a

l25

(2 01

4) To

id en

tif y

th e

cu rr

en t s

tr at

eg ie

s th

at A

SD -e

xp er

t p ed

ia tr

pr ov

id er

s ar

e us

in g

de si

gn in

g to

h el

p fa

ci lit

at e

th e

tr an

si tio

n to

a du

lt ca

Si xt

ee n

si te

s w

er e

re cr

ui te

d th

ro ug

h au

tis m

tr ea

tm en

t n et

w or

ks in

th e

Un ite

d St

at es

a nd

C an

ad a.

T he

p er

so n

w ho

w as

th e

m os

t k no

w le

dg ea

bl e

ab ou

t t ra

ns iti

on a

nd a

ut is

m w

as ke

d to

c om

pl et

e th

e in

te rv

ie w

: 5

ph ys

ic ia

ns , 5

p sy

ch ol

og is

ts , 7

s oc

ia l

w or

ke rs

a nd

/o r

ca re

c oo

rd in

at or

an d

2 re

gi st

er ed

n ur

se s

an d/

or n

ur se

ac tit

io ne

rs .

Te le

ph on

e in

te rv

ie w

: fr

am ew

or k

ap pr

oa ch

In te

rv en

tio n

st ra

te gi

es th

at a

re c

ur re

nt ly

b ei

ng u

se d

in cl

ud e

th e

fo llo

w in

g: p

ro vi

di ng

m ili

es w

ith w

ri tt

en m

ed ic

al s

um m

ar ie

s to

g iv

e to

a du

lt pr

ov id

er s,

c om

pi lin

g lis

ts o

f a va

ila bl

e ad

ul t p

ro vi

de rs

o r

co m

m un

ity r

es ou

rc es

, c oo

rd in

at in

g ca

re a

co m

m un

ic at

io n

be tw

ee n

in di

vi du

al p

ed ia

tr ic

a nd

a du

lt pr

ov id

er s,

m ak

in g

tr an

si tio

n- sp

ec ifi

c ap

po in

tm en

ts , a

nd u

si ng

c he

ck lis

ts to

tr ac

k tr

an si

tio n

pr oc

es s.

O th

in te

rv en

tio n

st ra

te gi

es th

at w

er e

id en

tifi ed

a s

ne ed

ed b

ut n

ot c

ur re

nt ly

in p

ra ct

ic e

w er

e fo

cu se

d on

e du

ca tio

n an

d tr

ai ni

ng (

eg , i

nf or

m at

io na

l w or

ks ho

ps to

tr ai

n fa

m ili

es a

nd y

ou th

a bo

ut tr

an si

tio ni

ng )

an d

a tr

an si

tio n

ce nt

er w

he re

a ll

se rv

ic es

ul d

be c

oo rd

in at

ed in

1 p

la ce

TA BL

E 1

Co nt

in ue

by guest on May 23, 2020www.aappublications.org/newsDownloaded from

ANDERSON et alS322

Au th

or (

Da te

) Ai

m s

Re cr

ui tm

en t a

nd S

am pl

e Ch

ar ac

te ri

st ic

s Da

ta C

ol le

ct io

n an

d An

al ys

is Ke

y Fi

nd in

M or

ri so

n et

a l26

00 9)

To e

xp lo

re p

ar en

t p er

ce pt

io ns

th e

su pp

or ts

a nd

co m

m od

at io

ns th

at c

ol le

ge -

bo un

d st

ud en

ts w

ith A

S ne

ed a

t th

e po

st se

co nd

ar y

le ve

l t o

su cc

es sf

Re cr

ui te

d th

ro ug

h a

ne tw

or k

pr of

es si

on al

s as

so ci

at ed

w ith

a lo

ca l

ch ap

te r

of th

e Au

tis m

S oc

ie ty

o f

Am er

ic a:

4 p

ar en

ts o

f y ou

ng a

du lts

ith A

S, a

ge s

8– 16

Fo cu

s gr

ou ps

: a na

ly si

s pl

an n

ot r

ep or

te d

Pa re

nt s

re co

m m

en de

d th

at c

ol le

ge s

m at

ch s

tu de

nt s

w ith

a cc

om m

od at

in g

pr of

es so

an d

pr ov

id e

a pr

of es

si on

al in

th e

co lle

ge s

tu de

nt s

er vi

ce s

pr og

ra m

to a

dv oc

at e

fo r

th ei

r ch

ild re

n. P

ar en

ts d

is cu

ss ed

th e

po ss

ib ili

ty th

at a

lte rn

at iv

e ro

ut es

to a

4 -y

lle ge

( eg

, c om

m un

ity c

ol le

ge )

m ay

b e

th e

be st

a ve

nu e

fo r

th ei

r ch

ild re

n. P

ar en

ag re

ed th

at th

ei r

ch ild

re n

w ou

ld c

on tin

ue to

r eq

ui re

h ig

he r

le ve

ls o

f p ar

en ta

l in

vo lv

em en

t a nd

s up

po rt

in c

ol le

ge , p

ar tic

ul ar

ly w

ith d

ai ly

li vi

ng s

ki lls

. Nu

eh ri

ng a

Si tli

ng to

n27

(2 00

To s

ee h

ow th

e tr

an si

tio n

pr oc

es s

in p

la ce

w as

w or

ki ng

a nd

he th

er it

w as

d oi

ng a

ll th

it co

ul d

fo r

ad ol

es ce

nt s

w ith

tis m

Fo ur

y ou

ng a

du lts

w ith

A SD

a ge

s 19

–2 2

y an

d 3

vo ca

tio na

l s er

vi ce

p ro

vi de

rs Au

di o-

re co

rd ed

te rv

ie w

s an

d cl

as sr

oo m

se rv

at io

ns in

b y

a te

ac he

r; in

te rv

ie w

s at

3 a

du lt

se rv

ic e

pr ov

id er

s’ fa

ci lit

ie s:

al ys

is p

la n

no t

re po

rt ed

Su cc

es sf

ul a

sp ec

ts o

f a du

lt pr

ov id

er s

in cl

ud ed

th e

fo llo

w in

g: th

e em

pl oy

m en

t o f

kn ow

le dg

ea bl

e tr

an si

tio n

sp ec

ia lis

ts , t

he v

ar ie

ty o

f c ho

ic es

th at

s tu

de nt

s an

d th

ei r

fa m

ili es

h ad

in a

g eo

gr ap

hi c

ar ea

, a nd

th e

us e

of a

ss es

sm en

t d at

a in

1 o

f t he

en ci

es . A

re as

o f i

m pr

ov em

en t i

nc lu

de d

th e

fo llo

w in

g: in

cr ea

se d

ed uc

at io

n of

h ig

h sc

ho ol

te ac

he rs

a nd

s ta

ff ab

ou t t

he a

du lt

vo ca

tio na

l s er

vi ce

p ro

vi de

rs ; t

he u

se o

f as

se ss

m en

t d at

a th

ro ug

ho ut

th e

tr an

si tio

n; in

cr ea

se d

co m

m un

ic at

io n

am on

g th

e st

ud en

t, hi

s or

h er

fa m

ily , t

he s

ch oo

l, an

d th

e ad

ul t v

oc at

io na

l s er

vi ce

p ro

vi de

r; a

al ig

ne d

pr og

ra m

m in

g be

tw ee

n hi

gh s

ch oo

l a nd

th e

st ud

en t’s

fu tu

re e

nv ir

on m

en ts

Pe ña

a nd

cu r28

01 3)

To e

xp lo

re th

e ex

pe ri

en ce

s of

re nt

s as

th ei

r st

ud en

w ith

A SD

tr an

si tio

ne d

to a

m m

un ity

c ol

le ge

Re cr

ui tm

en t e

-m ai

l s en

t t o

un iv

er si

su pp

or t s

er vi

ce s

of fic

es , c

lin ic

ia ns

ho w

or k

w ith

c lie

nt s

w ith

A SD

, i n

ad di

tio n

to a

ut is

m s

up po

rt g

ro up

s an

d so

ci al

n et

w or

ki ng

s ite

s: 1

8 pa

re nt

s of

y ou

ng a

du lts

w ith

A S,

tis m

, o r

PD D-

NO S

w ho

a tt

en de

d co

m m

un ity

c ol

le ge

Au di

o- re

co rd

in te

rv ie

w s:

ns ta

nt -

co m

pa ri

so n

an al

ys is

m et

ho d

Pa re

nt s

re po

rt ed

p la

yi ng

2 p

re do

m in

an t r

ol es

: ( 1)

c oa

ch in

g st

ud en

ts to

n av

ig at

e ca

m pu

s se

rv ic

es a

nd (

2) e

nc ou

ra gi

ng s

tu de

nt s

to p

ar tic

ip at

e in

c ol

le ge

m or

e in

de pe

nd en

tly . T

w o

m aj

or c

ha lle

ng es

e m

er ge

d fr

om p

ar en

t r ep

or ts

: ( 1)

n av

ig at

in g

th e

Fe de

ra l E

du ca

tio na

l R ig

ht s

an d

Pr iv

ac y

Ac t a

nd (

2) fi

nd in

g su

pp or

tiv e

fa cu

lty .

Sm ith

29 (

20 07

) To

e xa

m in

e th

e ne

ed s

of s

tu de

nt s

w ith

A S

an d

th e

av ai

la bi

lit y

po st

se co

nd ar

y se

rv ic

es a

ac co

m m

od at

io ns

M ai

le d

su rv

ey s

to s

ta ff

of p

os ts

ec on

da ry

sa bi

lit y

se rv

ic es

o ffi

ce s

w ho

a re

em be

rs o

f t he

A ss

oc ia

tio n

on H

ig he

r Ed

uc at

io n

an d

Di sa

bi lit

y: 2

9 st

af f

m em

be rs

in d

is ab

ili ty

s er

vi ce

s of

fic es

s ec

on da

ry in

st itu

tio ns

W eb

-b as

ed s

ur ve

y w

ith

cl os

e- a

nd o

pe n-

en de

d qu

es tio

ns :

an al

ys is

p la

n no

t re

po rt

Ac co

m m

od at

io ns

a t t

he p

os ts

ec on

da ry

le ve

l d o

no t t

ak e

in to

c on

si de

ra tio

n th

e sp

ec ifi

c ne

ed s

of s

tu de

nt s

w ith

A S.

R es

po nd

en ts

r ep

or te

d a

ne ed

fo r

as si

st an

ce in

th e

ar ea

s of

s oc

ia l s

ki lls

, i nt

er vi

ew in

g sk

ill s,

w or

k et

hi c,

a nd

s oc

ia l b

eh av

io r.

W ar

fie ld

e t a

l30

(2 01

5) To

u nd

er st

an d

pr of

es si

on al

h ea

lth

pr ov

id er

s’ e

xp er

ie nc

es in

ov id

in g

pr im

ar y

m ed

ic al

c ar

e to

p eo

pl e

w ith

A SD

, t he

tr ai

ni ng

ey r

ec ei

ve d,

th e

tr ai

ni ng

th ey

ck ed

, a nd

r ec

om m

en da

tio ns

r en

co ur

ag in

g m

or e

ph ys

ic ia

ns to

s er

ve th

po pu

la tio

Re cr

ui te

d th

ro ug

h th

e Au

tis m

T re

at m

en t

Ne tw

or k

an d

Ne w

E ng

la nd

In de

x: 9

ys ic

ia ns

a nd

1 n

ur se

w ho

a ct

iv el

y pr

ov id

e m

ed ic

al c

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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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