Running Head: AUTISM IN ADULTHOOD

Adulthood on the Autism Spectrum

Chelsea M. Lipson
California Lutheran University
AUTISM IN ADULTHOOD
Abstract
Autism Spectrum Disorder is a group of pervasive developmental disorders, including
Autism, Asperger Syndrome and Pervasive Developmental Disorder!ot "ther#ise Specified
$PDD!"S%. &hese disorders 'are characteri(ed by a triad of impairments in social interaction,
social imagination and communication and share common traits such as an e)tremely limited
range of activities and interests, repetitive and stereotyped behaviours and lo# a#areness of
social rules* $+yd(e#s,a, -./-, p. 01%. &here has been an increasing amount of research and
publications about Autism Spectrum Disorders as these disorders are becoming more recogni(ed.
2o#ever, much of this #or, is limited to describing infants, toddlers and children $Magiati, &ay,
3 2o#lin, -./4%. &his paper aims to revie# the research that has been done regarding adults on
the Autism Spectrum.
5ey#ords6 Autism Spectrum Disorders, ASD, Adulthood, Ad7ustment
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AUTISM IN ADULTHOOD
Adulthood on the Autism Spectrum
Autism Spectrum Disorder is prevalent in /8 of all schoolaged children $Schall 3
McDonough, -./.%. 9ecause early intervention providers and elementary school teachers $aside
from those on the spectrum themselves% have been most affected by the increased recorded
prevalence in Autism Spectrum Disorders, most research on the Autism Spectrum and Autism
Spectrum Disorders describes characteristics and interventions for children $Schall 3
McDonough, -./.%. 9ecause of this, there is a lac, of research about adults #ith Autism
Spectrum Disorders. &he characteristics and symptoms of Autism, Asperger disorder, and PDD
!"S change as a person on the Autism Spectrum gro#s out of childhood and early adolescence
$Schall 3 McDonough, -./.%. &his means that an adult #ith an Autism Spectrum Disorder
cannot simply be treated the same as a child #ith the same disorder because they have different
symptoms and challenges that they must handle.
&he characteristics of people #ith Autism Spectrum Disorders consist of primary
behavioral characteristics in three areas6 'communication deficits, social s,ill deficits, and
restricted, repetitive, and stereotyped patterns of activities, interests, behavior* $Schall 3
McDonough, -./., p. 0-%. Secondary characteristics common among people #ith Autism
Spectrum Disorders include 'sensory sensitivities, behavior challenges, and additional mental
health diagnoses such as an)iety disorders and depression* $Schall 3 McDonough, -./., p. 0-%.
2o#ever, these traits are most obvious in children on the Spectrum and tend to be less
pronounced as a person ages from childhood to adolescence and adulthood $Schall 3
McDonough, -./.%. &hese characteristics may or may not lessen as individuals #ith ASD gro#
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AUTISM IN ADULTHOOD
older. Some people continue throughout their life #ith the same deficits, #hile others may
improve $Schall 3 McDonough, -./.%. &he li,elihood of improvement in social s,ills increases
for those #ho #ere socially engaged #ith their peers $Schall 3 McDonough, -./.%. People on
the spectrum also may decrease their stereotyped movements and behavior as they age $Schall 3
McDonough, -./.%. 2o#ever, many comorbid conditions such as an)iety continue through
adulthood.
An)iety is a prominent issue in young adults #ith ASD $&rembath, :ermano, ;ohanson,
3 Dissanaya,e, -./-%. People #ith Autism Spectrum Disorders 'e)perience a variety of
symptoms of an)iety, including physiological arousal and panic* that can interfere #ith their
daily lives $&rembath, :ermano, ;ohanson, 3 Dissanaya,e, -./-, p. -/<%. &his is compounded
by the fact that 'individuals #ith ASD are also reported to have poor stress management s,ills*,
ma,ing it more difficult to handle an)iety and stress $&rembath, :ermano, ;ohanson, 3
Dissanaya,e, -./-, p. -/<%. =n addition to the common triggers that can lead to an)iety in the
general population $personal factors, family factors, and environmental factors%, the 'the inherent
difficulties in social a#areness and social understanding e)perienced by individuals #ith ASD
may act as additional triggers* $&rembath, :ermano, ;ohanson, 3 Dissanaya,e, -./-, p. -/4%.
=n a study by David &rembath, PhD, Carmela :ermano, M9S, :raeme ;ohanson, PhD,
and Cheryl Dissanaya,e, PhD, firstperson accounts by young adults #ith ASD and an)iety #ere
given to sho# ho# the an)iety affects them $&rembath, :ermano, ;ohanson, 3 Dissanaya,e,
-./-%. // young adults #ith Autism Spectrum Disorder $nine men and t#o #omen% bet#een the
ages of /0 and <> #ere intervie#ed and their responses #ere recorded on audio and video, as
#ell as transcribed on Microsoft ?ord $&rembath, :ermano, ;ohanson, 3 Dissanaya,e, -./-, p.
-/4%. < themes and /. subthemes #ere found to 'account for the participants@ everyday
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AUTISM IN ADULTHOOD
e)periences of an)iety.* $&rembath, :ermano, ;ohanson, 3 Dissanaya,e, -./-, p. -/A%.
&he < themes #ere sources $or triggers%, e)periences $conseBuences%, and coping
strategies $solutions% $&rembath, :ermano, ;ohanson, 3 Dissanaya,e, -./-, p. -/A%. &he
participants listed -. sources of an)iety, including sound and light sensitivities,
uncertaintyCdecisionma,ing, une)pected or sudden change, communicating #ith others, meeting
deadlines, and eye contact. "ne participant named Shane spo,e of his an)iety related to
interacting #ith people at his university, saying,
'=@m a very blunt and direct person but apparently the people in my course...get offended
#hen =@m being honest. D&hey tell me that.E = have to use #hite lies and = have to tal, in a
more indirect manner. So then = have an)iety about ho# to tal, in a more indirect manner
and ho# to appeal to their Femotions@ and ho# to sound Fflo#ery@ and Fpleasant@*
$&rembath, :ermano, ;ohanson, 3 Dissanaya,e, -./-, p. -/0%.
Many participants described ho# adapting to neurotypical communication styles #as a
significant trigger of an)iety, causing feelings of paranoia about social interaction. "ne young
man named Andre# said that, '=t feels as though =@ve got a surveillance, DaE video camera in my
head, #atching my every move and it@s basically 7udging me, saying, F?hy the hell are you
doing thisG ?hy the hell are you doing thatG Hou should@ve done it this #ay or that #ay@*
$&rembath, :ermano, ;ohanson, 3 Dissanaya,e, -./-, p. -/0%.
&here are many coping s,ills that have been found to either alleviate or prevent an)iety
for people. Ior e)ample, participants of &rembath, :ermano, ;ohanson, 3 Dissanaya,e@s study
described /J solutions that they use to prevent or decrease an)iety, including developing multiple
interests, selftal,, and deep breathingCmeditation $&rembath, :ermano, ;ohanson, 3
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AUTISM IN ADULTHOOD
Dissanaya,e, -./-, p. -/1% %. &he most common strategy for managing an)iety #as to 'escape,
either physically or through diversion and distraction* $&rembath, :ermano, ;ohanson, 3
Dissanaya,e, -./-, p. -/1% from the situation triggering the feelings of an)iety.
According to Kric Iombonne, MD, 'little is ,no#n about the phenomenology and
associated features Dof ASDE as individuals age* $Piven 3 +abins, -.//, p. -/>4%. 2o#ever, case
studies sho# the differences bet#een adults on the Autism Spectrum and ho# they #ere as
children. "ne such case study describes Mary Ann, a t#entyyearold #oman diagnosed #ith
PDD!"S. She did not spea, until the age of five and #as described by her parents as 'in a
#orld of her o#n* $Schall 3 McDonough, -./., p. 0<%. As a young adult, she has better social
s,ills but still has some challenges. Ior e)ample, upon meeting #ith a researcher, the researcher
describes that she 'seems overly polite and engaging* $Schall 3 McDonough, -./., p. 04%.
2o#ever, there are differences that stand out, such as her 'pedantic and monotone* voice and
'giggly and louder than e)pected* laugh $Schall 3 McDonough, -./., p. 04%. Although she has
social and communication deficits, they are a much less pronounced than her lac, of verbal
communication in childhood. She also does not display any e)cessive interests that characteri(e
Asperger@s syndrome and does not have stereotyped movements $Schall 3 McDonough, -./.%.
Li,e many adults on the Autism Spectrum, Mary Ann #ants a 7ob and strives for
independence. 2o#ever, she does not have a specific career interest. =n high school, she too,
classes at the technical center in printing and print shop. She had difficulty learning all of the
computer programs and struggled #ith the social aspects of the 7ob. MaryAnn has 'limited
,no#ledge of her strengths and s,ills, and an even more limited ,no#ledge of #or, and
adulthood*, but 'does not display many of the most debilitating challenges associated #ith
DAutism Spectrum DisordersE* $Schall 3 McDonough, -./.%. Schall and McDonough conclude
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AUTISM IN ADULTHOOD
that the solution to Mary Ann@s case is to figure out '#hat instruction and interventions #ould
result in increasing her career a#areness and self determination* $Schall 3 McDonough, -./.,
pg. 0>%. &his is the case for many young adults on the autism spectrumL they have different
challenges than children #ith the same disorder and therefore need different ,inds of
interventions.
&ransition to adulthood comprises 'completing school, gaining employment,
participating in postsecondary education, contributing to a household, participating in the
community, and e)periencing satisfactory personal and social relationships* $+yd(e#s,a, -./-,
pg. 00%. Many of these goals are more difficult to accomplish for people #ith ASD than they are
for neurotypical people. According to studies conducted by the !ational Autistic Society of
Scotland, 'adults #ith ASD in Scotland struggle to access the support they need to live their lives
as fully as possible* $+yd(e#s,a, -./-, pg. 0J%. &he ma7ority of the adults 'e)perienced
problems in trying to receive support from their local authority or health board* $+yd(e#s,a,
-./-, pg. 0J%. A survey by the !ational Autistic Society reported that although one of its main
goals #as to help Autistic adults obtain employment, its success in that area #as poorly rated
$+yd(e#s,a, -./-%. &his sho#s that much more effort and research is needed to help adults #ith
ASD gain independence and live fulfilling lives.
Currently, there is a large deficiency in the amount and Buality of services available to
adults #ith ASD. Many studies many studies have 'highlighted the fact that support needs for
adults #ith ASD and their families are largely unmet* $Magiati, &ay, 3 2o#lin, -./4%. &hey
struggle #ith 'accessing appropriate service provision* such as 'getting a diagnosis, #hich is
often a critical reBuirement for getting support* and is 'particularly challenging and hard for
them* $+yd(e#s,a, -./-, pg. J.%. Si)ty percent of local authorities of !ational Autistic Society
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AUTISM IN ADULTHOOD
Scotland agree that receiving a diagnosis is critical to be able to receive support. $+yd(e#s,a,
-./-% 2o#ever, there are only /- services in Scotland that provide adult diagnosis of Autism
Spectrum disorders. $+yd(e#s,a, -./-%. Upon concluding a group of case studies of three young
adults on the Autism Spectrum, Carol M. Schall and ;ennifer &odd McDonough mention that 'all
three individuals reBuire higher intensity services than are typically offered to transition aged
youth* $Schall 3 McDonough, -./., p. 0/%.
Many suggestions have been made regarding ho# to help adults on the Autism Spectrum
gain independence. Unfortunately, &he general opinion among many researchers is to include
services in a #ider frame#or, and adding them to groups that autistic adults are already a part
of, such as schools, colleges and universities, and employment agencies. $+yd(e#s,a, -./-%.
&his strategy 'facilitates the sharing of ideas, deploying appropriate resources and s,ills to
deliver holistic and fle)ible provision and to offer progression path#ays* $+yd(e#s,a, -./-, pg.
0J%.
Unfortunately, there is currently very little research on older adults on the Autism
Spectrum. $Magiati, &ay, 3 2o#lin, -./4, p. 0>% 2o#ever, a study by 9illstedt et al. focusing on
older adults #ith ASD concluded that A-8 of the participants had a good or very good Buality of
life, #hile only /-8 had a poor or very poor Buality of life. $9illstedt, :illberg, 3 :illberg,
-.//, p. /-% Dr. ;oseph Piven and Dr. Peter +abins suggest many solutions to the challenges they
face, such as to 'develop diagnostic criteria and instruments for diagnosis and assessment of the
needs of older adults #ith ASDs*, and to 'conduct studies of psychosocial, behavioral,
educational, and pharmacological interventions...* $-.//%. &his is one of many topics that needs
more study in the area of Autism Spectrum Disorder research.
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AUTISM IN ADULTHOOD
As previously mentioned, there is a great deficiency in the area of research of adolescents
and adults on the Autism Spectrum. ?hile adults may have different and less pronounced
problems than children, they still have many struggles. Many more studies are necessary to fill
this gap, because it is critical to be able to aid this part of the population. &he research that has
been done has noted that adults #ith ASD are receiving less support than their younger
counterparts, and struggle to transition successfully from childhood to adolescence and
adulthood. Additional studies #ill allo# researchers to help find the best #ay to better support
older people on the Spectrum and help them lead fulfilling lives.
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AUTISM IN ADULTHOOD
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Piven, ;., 3 +abins, P. $-.//%. Autism Spectrum Disorders in "lder Adults6 &o#ard Defining a
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..<-<<
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