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Community Inclusion
Research Bulletin Issue No. 35
July 2021
Community Inclusion 3
Contents
Introduction 05
Interview with Fiona Ferris 06
Research Articles Summarised
1. Increasing Autism Acceptance: The Impact of the Sesame Street 08
‘See Amazing in All Children’ Initiative
2. Experiences Participating in Community Physical Activity by Families 10
with a Child on the Autism Spectrum: A Phenomenological Inquiry
3. Autism in Australia: Community Knowledge and Autistic People’s Experiences 13
4. Autism in Black, Asian and Minority Ethnic Communities: 16
A Report on the First Autism Voice UK Symposium
5. Targeting IEP Social Goals for Children with Autism in an Inclusive Summer Camp 18
6. Approaches to Inclusion and Social Participation in School for Adolescents 21
with Autism Spectrum Conditions (ASC) – a Systematic Research Review
7. A Review of CommunityWorks Canada®: Toward Employability 25
Among High School–Age Youth With Autism Spectrum Disorder
8. Community Led Co-Design of a Social Networking Platform with Adolescents 28
with Autism Spectrum Disorder
9. Including Students with Autism in Schools: 30
A Whole School Approach to Improve Outcomes for Students with Autism
Conclusion 34
Community Inclusion 5
INTRODUCTION
This is the thirty-fifth Research Bulletin produced by
Middletown Centre for Autism, providing summaries
of ten articles from 2018 to 2021.
The Bulletin commences with an interview from Fiona
Ferris, Deputy Chief Executive Officer at AsIAm.
Fiona has worked with AsIAm since 2017, initially
in the role of Early Years Specialist, but assumed the
role of Deputy CEO in 2019 and oversees the Training
Department within AsIAm. Fiona delivers talks both
nationally and internationally about autism, neurodiversity
and disability, while contributing her own experiences as
an autistic adult and a parent to a child on the spectrum.
In her talks, Fiona aims to give practical, relatable
knowledge and strategies to assist others in supporting the
autistic community to meet their own individual potential
and fully participate in their communities. Fiona’s expertise
covers a broad range of issues including autism and women,
neurodiversity, disability rights, employment, accessibility
and education. Outside work, Fiona is an artist and is also
completing an Honours Degree in Law.
Please note that the views represented in this document do
not necessarily reflect the views of Middletown Centre for
Autism. Reviewers have, where possible, used the original
language of the article, which may differ from UK and
Ireland usage and the usage of a range of terminologies
for autism.
6 Middletown Centre for Autism Community Inclusion 7
INTERVIEW WITH
FIONA FERRIS
1. How can community inclusion be 5. Why is community inclusion important 8. Are there any fundamental differences
best described? for autistic students? between inclusion and integration for
autistic children and young people?
I believe community inclusion is best described as Community inclusion is something that everyone
when there is an opportunity within a community should be able to benefit from and enjoy. Under Integration is to ensure that everyone has a
for all its members to live, work, contribute and the Universal Declaration of Human Rights seat at the table where the discussion is taking
participate without barriers or obstacles to do everyone has the right to participate within the place. Inclusion is to ensure that everyone has an
so. In an inclusive community each person has cultural life of the community. The reason this opportunity for their voice to be heard.
their individual needs and differences not only is so important to focus on in terms of autistic
accommodated, but celebrated and valued. people is because of the increased barriers they 9. Can the need for individualisation
face to have their human rights met. of approach impede the school or
2. What does community inclusion mean community’s ability to provide
for autistic children and young people? 6. How can we best support employability inclusive practice?
among young autistic people within
Many autistic children and their families I believe the opposite to be the case. It is only
the community?
experience barriers to inclusion within their when we take an approach of individualisation
community that makes them unable to participate Unemployment and underemployment are that we can truly achieve inclusive practice. All
and enjoy the full benefits and offerings that still huge areas of concern within the autistic children and students should have their strengths
others in their community do. This can lead to community, again due to a lack of understanding and needs addressed in a holistic, individualised
social isolation and exclusion for many families. of autism. Creating and allowing for work way in order to develop a plan for them to meet
Community inclusion would describe a situation experience and placement opportunities their own individual potential. If we do not take
when these barriers do not exist. within education will help autistic students see an individualised approach, we are not truly
what careers they are best suited for; however, achieving inclusion. It is the difference between
3. What challenges do autistic students there is a large amount of work to be done equality and equity.
experience that restricts their inclusion in the employment space itself to increase
within the community? understanding and accommodations for autistic
The main barriers restricting inclusion for people in the workplace.
autistic students within the community are 7. How can families be best supported in
communication differences, the sensory relation to community inclusion?
environment, lack of predictability and control
and the judgement and attitude of others. One of the key difficulties families face within
the community is social isolation due to the
4. How can we promote and/or best barriers for inclusion they experience. Ensuring
facilitate community inclusion for that families of autistic children or adults are
autistic children and young people? not excluded or forgotten about when planning
In AsIAm’s experience the main reason these community events or social engagement
barriers for inclusion still exist is due to a lack opportunities is essential, as is making sure that
of understanding of autism and neurodiversity. these opportunities are inclusive and accessible
Through promotion of increased understanding, for all.
using education and awareness campaigns that
will inform people what the barriers are and what
they can do to help, many of these barriers can be
addressed and eventually removed.
8 Middletown Centre for Autism Community Inclusion 9
INCREASING AUTISM ACCEPTANCE:
THE IMPACT OF THE SESAME STREET
‘SEE AMAZING IN ALL CHILDREN’ INITIATIVE
BACKGROUND autistic child. Both surveys collected measures IMPLICATIONS FOR PRACTICE
on knowledge and acceptance of autism as well (by the authors)
There continues to be stigma surrounding as parenting matters (parental competence,
autism and its acceptance within the wider strain and confidence) and community inclusion; The authors note that while the response to the
community. Public attitudes mean that many while the parents of autistic children answered growing prevalence rate of autism has resulted in
autistic individuals still experience discrimination additional questions about stigma. Once they more effective identification and support, there
because of their diagnosis. A common result is had completed the survey parents were asked to has been little focus on initiatives that promote
that parents of autistic children experience high spend 1.5–2 hours browsing the materials on the acceptance and target discrimination. This
levels of parenting strain as well as internalised See Amazing website. After one week a follow- research paper highlights the potential of a large-
feelings of stigma. Research suggests that up survey was sent to participants that included scale public health initiative delivered via the
increasing public knowledge about autism the same measures as at baseline, but now asked internet to promote community acceptance and
can lead to more positive perceptions of the questions on the extent of their satisfaction with inclusion for autistic children and their families,
condition; redressing the bias that many autistic the website. The parents of autistic children were showing small but positive changes in both
children and their families experience in their also asked to complete a one-month follow-up parents of non-autistic and autistic children. It is
daily lives. This research paper evaluates the survey to determine if any additional benefits noted that the See Amazing materials could be
online initiative Sesame Street and Autism: See emerged over time. developed to include diverse perspectives within
Amazing in All Children (See Amazing), which the autistic community and adapted for more
was developed by Sesame Workshop as a strategy RESEARCH FINDINGS intense long-term use.
to increase understanding and acceptance of
autism on a community level. The researchers found that following exposure to Full Reference
the See Amazing website:
RESEARCH AIM Anthony, B.J., Robertson, H.A., Verbalis, A.,
(1) parents of both autistic and non-autistic Myrick, Y., Troxel, M., Seese, S. and Anthony,
The aim of this research was to evaluate the children found the content useful and L.G., (2020). Increasing autism acceptance: the
impact of the See Amazing initiative across engaging, and would either use it themselves impact of the Sesame Street ‘See Amazing in All
the United States in order to assess a) the or recommend it to others. Children’ initiative. Autism. 24(1), pp. 95–108
acceptability of the materials b) their potential to
(2) engagement with the materials led to
promote increased understanding and acceptance
significant increases in knowledge and
of autism, and c) whether they promote a more
acceptance levels among parents of non-
positive attitude towards autism.
autistic children.
RESEARCH METHODS (3) parents of autistic children reported positive
Surveys were administered online to parents change in terms of community inclusion, a
of autistic children and parents of non-autistic decrease in parenting strain and improved
children aged up to six years. Participants feelings of parenting competence.
were provided with a link to the online survey, The effect sizes were generally small; however, this
screened in relation to their suitability and was attributed to the brief exposure of parents to
directed to the appropriate baseline survey based the materials.
on whether or not they were a parent of an
10 Middletown Centre for Autism Community Inclusion 11
EXPERIENCES PARTICIPATING IN COMMUNITY PHYSICAL
ACTIVITY BY FAMILIES WITH A CHILD ON THE AUTISM
SPECTRUM: A PHENOMENOLOGICAL INQUIRY
BACKGROUND Articles Reviewed several difficulties for autistic children, such 1. Safety outside the home
as lack of motivation, limited attention,
This study used thirteen semi-structured Twenty-nine papers were reviewed. The understanding, motor skills and social skills. Safety in the community was the primary concern
interviews to try and understand issues and researchers looked at previous research in Family activity can be influenced by the sensory for all the families in the current study and was
barriers affecting participation in gross motor relation to the levels of engagement of members processing needs of the child and has been shown defined as any time the family described an
activities. The interviews were conducted with of the autistic community in physical activities. to increase as children gain more independence. incident, situation or environment they perceived
families with an autistic child, and investigated Literature identifies the health benefits of physical Opportunities for gross motor activities are as unsafe for their child. Learning new skills in
the families’ experiences and views on activity and demonstrates that exercise is an important because when obstacles are reduced, public, concerns of children running away, safety
participation. evidence-based practice for those with autism. gross motor activities provide chances to build around using playground equipment, stress in
Limited studies have investigated whether the stronger connections to family and to the broader relation to the child wandering or having to over
RESEARCH AIM benefits of gross motor activities apply to those plan activities were identified as special challenges
community. Family activities can also aid the
with a diagnosis of autism or if obstacles might development of gross motor abilities, which for the autistic child’s family. These concerns were
The aim of this study was to explore the parental
exist to limit the autistic population’s access are linked to functional living skills. Overall consistent across all the families regardless of the
experiences of the autistic child taking part
to gross motor activities. Robust evidence can satisfaction and competence when participating age or severity level of the autistic child.
in community gross motor activities and to
be found on the significance of gross motor in activities are important for an individual’s
understand the factors affecting involvement in 2. Lack of acceptance
activities in neurotypical populations, but limited mental health.
these activities.
studies have highlighted the barriers for autistic Lack of acceptance, isolation and judgement were
RESEARCH METHODS people. Evidence indicated that most autistic RESEARCH FINDINGS highlighted by families in this research study.
participants enjoyed gross motor activities and They longed for acceptance and understanding
Ethical approval was sought and received from that autistic teenagers spend more inactive time Families who had an autistic child shared their
but they described their experiences of feeling
Chico, California State University Institutional and less active time in gross motor activity than experiences of gross motor activities in the
judged by members in the community who do
Review Board. their neurotypical peers. Nevertheless, they often community. This research paper identified the
not have an autistic child. Due to this perceived
stated that they were too busy to do gross motor following four themes:
This phenomenological study used semi- judgement families would often avoid busy
structured interviews to collect data from activities and that it was boring, dangerous, too public places; opting instead to go there at quiet
thirteen families with a child on the autism hot or too cold to partake in these activities. The times for fear of being judged if their child had a
spectrum to understand their experiences as outcomes of these results are supporting factors behaviour event or became deregulated.
a family attempting to access physical activity in the development of appropriate gross motor
opportunities. Eight of the families had an autistic activity programmes among individuals on the
child in their teens and five families had an autism spectrum. More evidence is required
autistic child under the age of ten. Eleven families to understand the challenges and barriers for
had more than one child in the family, and autistic individuals, especially because of the great
while each family had only one child diagnosed discrepancy between individuals on the autism
with autism, no siblings were at risk for autism. spectrum.
Purposive sampling was used to recruit parents It is important to note the influence of family
from like geographic regions that had similar members when considering the barriers to
experiences of raising an autistic child. All autistic children engaging in gross motor
parents were over the age of thirty, came from activities as children with autism are dependent
a wide range of education and employment on these individuals for support when
backgrounds and were mostly Caucasian with a participating in these activities. This was also
few being Hispanic or mixed race. highlighted in previous studies that recognised12 Middletown Centre for Autism Community Inclusion 13
AUTISM IN AUSTRALIA: COMMUNITY KNOWLEDGE
AND AUTISTIC PEOPLE’S EXPERIENCES
3. Behaviour affecting family participation allow researchers to check for corroborative or BACKGROUND understanding of autism in the wider community.
contradictory information gained from previous The research aims were:
Behaviour rooted in the autistic child’s inability responses. Future studies should examine the Historically the definition of Autism Spectrum
to cope in social situations, difficulty with change experiences of families on the autism spectrum in Condition (ASC) has focused on a deficit-based a. to investigate community attitudes towards
and uncertainty and sensory processing issues more urban areas and compare this experience to model. The emerging concept of neurodiversity autism across Australia.
were highlighted as the main causes of discomfort their more rural counterparts. Also, preferences moves away from this deficit-based approach
to the family and all those involved. This affected b. to examine the experiences of autistic people
for activities can vary by culture, region, or both, towards a focus on neurological differences. In
family participation and influenced the types of and their families in the state of Victoria.
and although the experiences of the families in the neurodiversity model the strengths associated
activities that their family could participate in. this study might be true for their area, families in with autism are recognised, and disability is RESEARCH METHODS
other parts of the country and the world are likely viewed as resulting from environmental failures
4. Limited opportunity for activity Two separate studies were carried out. In Study
to have different experiences with the autistic to accommodate the needs of the autistic
Restricted opportunity for gross motor activity person. With research studies and media 1 a group of 2,424 (primarily non-autistic)
community.
was described as the following: any experience coverage reporting the increase in prevalence Australian adults aged eighteen years and
that does not fit the child’s needs and/or the (by the reviewer) and incidence rates of autism over the past older were recruited through a mixed-mode
family itself being challenged to take part two decades, public awareness of autism has approach that consisted of telephone and online
Further research is needed to examine detailed surveys. The focus of Study 1 was to measure
in the activity or causing the child to opt increased; however, the general population’s
information from families. Future researchers understanding of autism and levels of belief
out. Even though the families in the present understanding of the needs of autistic people
might find it advantageous to conduct multiple in facts and myths through five key areas of
study understood the importance of being and the prevalence rates of autism remains low.
interviews over several sessions. knowledge: Awareness, Prevalence, Causation,
physically active and were motivated to do this This research paper seeks to understand the
in a community setting, they reported many Autism awareness training should be widely experiences of autistic individuals in Australia Outcomes and Impact. In Study 2 a group of
challenges in engaging in gross motor activities. available in community settings and improve and also to understand community knowledge 1,353 autistic adults aged eighteen years or over
social connections by encouraging parents to be and attitudes towards autism. and/or a family member/carer of an autistic
IMPLICATIONS FOR PRACTICE become active members of community groups, person were recruited to participate in an online
(by the author) policy making and planning bodies. Autism- RESEARCH AIMS survey. The focus of this study was to explore the
specific activities, accessible for the child and the experiences of autistic people, what is important
This research study examined the factors that This study looked to explore the lived experiences
family, would increase awareness and support to them and what they want the wider public to
impact participation in community gross of autistic people and their families and also the
the autistic child’s engagement in gross motor know about how autism affects them.
motor activities for families that have an
activities.
autistic child. Several limitations to this study
should be identified: small sample sizes limit Full Reference
the generalisability of the findings to other
populations; only one main interview was Blagrave, J. and Colombo-Dougovito, A.,
conducted for each family, which could have (2019). Experiences participating in community
affected the type of information gathered by the physical activity by families with a child on the
researchers; multiple data points would also avoid autism spectrum: a phenomenological inquiry.
the burden of a long single interview and would Advances in Neurodevelopmental Disorders. 3(C)
DOI:10.1007/s41252-018-0094-0.14 Middletown Centre for Autism Community Inclusion 15
RESEARCH FINDINGS Table 1
The data from non-autistic participants in Study 1 showed the following understanding.
Table 1
The data from non-autistic participants in Study 1 showed the following understanding.
Statement Most % Some % Few% None% Unsure%
Statement True % False % Unsure % Difficulties in social situations 18.0 34.6 39.3 7.1 1.0
Autism affects everyone differently 88.4 2.0 9.5 Meltdowns 14.0 29.8 44.8 9.9 1.5
Sensitive to noise and light 85.6 2.4 12.0 Stimming (e.g. waving hands) 10.5 28.5 45.5 12.2 2.3
Difficulty making friends 77.9 10.2 11.8 Anxiety about unexpected changes 5.8 23.5 56.1 13.1 1.5
Struggle to gain employment 76.8 17.7 9.3 Making noise 5.1 25.3 52.4 14.8 2.4
Number of autistic people increasing 61.3 6.1 32.5 Literal interpretation of language 4.4 17.3 59.1 17.0 2.2
Autism is a mental health condition 60.7 22.1 16.9 Sensory sensitivity 3.6 20.7 57.7 16.2 1.1
Number of girls with autism is increasing 37.8 8.2 53.9 Using language that seems odd 4.4 20.0 58.4 15.0 2.2
Often violent 19.2 59.5 21.0 Wandering/absconding 4.1 23.7 52.8 15.6 3.8
School can refuse to enrol 17.6 47.6 34.7 Needing extra time 3.6 14.9 62.1 18.0 1.4
Should go to specialist school 14.5 72.4 12.9
IMPLICATIONS FOR PRACTICE • Study 2 had the following limitations: the
Grow out of condition 4.1 77.7 18.1 response rate was low (9.4%) and obtained from
(by the authors)
Can’t play sport 2.5 90.5 7.1 a single source, therefore any generalisation
Autism only affects males 1.3 91.2 7.4 • The instruments in this study were devised in should be undertaken with caution. Additionally,
consultation with autistic people and family the sample was predominately female and
members/carers and highlight the importance of predominately family members caring for
Additionally, 41% were aware that the cause of similar for the adult population with 69.3% of
working with the autistic community. autistic children, who are likely to be more
autism is unknown, with 45.8% being aware that 18–24 year olds receiving support compared with
knowledgeable about autism and better able to
autism can be genetic or inherited; however, several 50.6% of 25–44 year olds and only 27.3% aged • Increased awareness is needed around the
obtain resources and information than autistic
knowledge gaps were identified, for example 20% 45 or over. That the support they were receiving prevalence of autism in girls and around the
adults or those caring for them, so the needs,
of non-autistic respondents were unsure if autism was inadequate was reported by 42.8% of those differences in presentation between males and
concerns and negative experiences of this
was caused by vaccines such as MMR with almost in current receipt of services. Of the autistic females.
population may be underestimated.
21% unsure if causation was due to environmental respondents 49% did not receive any external
• Education is needed to reduce misperceptions
factors and 3% of the opinion that autism was due support. • More research that incorporates the perspectives
around autism as these myths are potentially
to poor parenting skills. of autistic people and the wider community is
In relation to Study 2 participants’ perception harmful to the autistic population and their
needed, and this research should underpin the
The research data from Study 2 found that 70% of of community attitudes to autism, 87% agreed families.
development of interventions with, rather than
respondents were in receipt of external supports that most people in the community have heard • Increased support is needed for older children about, autistic people.
either for themselves or their family member. of autism but only 15.3% felt that people in the transitioning to adulthood and for autistic adults.
Of those not receiving external support, 59.8% community understood how autism might affect Full Reference
expressed a need for such support while 16.6% someone’s behaviour and only 3.7% felt that • Study 1 had the following limitations: the
Jones, S.C., Akram, M., Gordon, C.S., Murphy,
were unsure. The largest cohort in receipt of they know how to support autistic people. This data was self-reported and therefore may be
N. and Sharkie, F., (2021). Autism in Australia:
support were children aged 0–5 (89.4%), in was consistent with the data from the autistic influenced by social desirability bias, and also
community knowledge and autistic people’s
comparison to 72.8% of children aged 6–12 participants’ own experiences (86%, 14% and the non-autistic participant sample were more
experiences. Journal of Autism and Developmental
years and 58.6% of 13–17 year olds. This was 2% respectively). highly educated than the typical Australian
Disorders. DOI:10.1007/s10803-020-04819-3.
population, which may mean that the identified
knowledge gaps are underestimated.16 Middletown Centre for Autism Community Inclusion 17
AUTISM IN BLACK, ASIAN AND MINORITY ETHNIC
COMMUNITIES: A REPORT ON THE FIRST AUTISM
VOICE UK SYMPOSIUM
BACKGROUND The twenty-nine participants were then divided This study highlights the importance of:
into groups to discuss the themes from a
Little is known about the way autism is practical and operational perspective. The groups • the need for autism stakeholders working
interpreted and accepted among ethnic minority generated action points that were recorded on within the ethnic minority community to
communities in the United Kingdom (UK). This the whiteboard. The evaluation covered what establish good partnerships to raise autism
report summarised a symposium on autism participants found useful, what was missing, ideas awareness.
in the UK Black, Asian and Minority Ethnic for future events, suggestions for improvements • the need for professionals to improve their
community in 2018, organised by Autism Voice and offers for future contributions. Thematic understanding of cultural values of the different
UK, Participatory Autism Research Collective analysis of the evaluations and group discussions populations within the ethnic minority
(PARC) and the Critical Autism/Disabilities was conducted. community.
Studies Research Group (CADS) at London South
Bank University (LSBU). RESEARCH FINDINGS • schools to help bridge the gap between local
support services and families from ethnic
RESEARCH AIMS The main themes generated from the evaluations
minority communities, to enhance positive
included:
The objectives of the symposium were to acceptance and recognition and access to
highlight different perspectives about autism • Culture, religion and ethnicity: cultural, ethnic appropriate services, and to reduce stigma.
in ethnic minority communities, to promote and religious sensitivities were important to
Full Reference
inclusion and to preserve the cultural dignity of participants, who felt that these were often
the community in supporting autistic members. ignored by non-ethnic minority professionals. Kandeh, M.S., Kandeh, M.K., Martin, N. and
This report summarised the symposium and Krupa, J., (2018). Autism in black, Asian and
• Autism knowledge and understanding:
reported the viewpoints of the participants minority ethnic communities: a report on
the need for collaboration to improve
attending the symposium. the first Autism Voice UK Symposium.
autism awareness within the community
Advances in Autism. 6(2), pp. 165–175.
RESEARCH METHODS and understanding by professionals of the
DOI: 10.1108/AIA-12-2018-0051.
intersectionality between autism and identity in
Of the sixty-five delegates attending the ethnic minority families was prioritised.
symposium, twenty-nine participants completed
and returned anonymous evaluation forms • Stigma: issues around feelings of stigma were
about the symposium. These included a range common, but delegates felt that these were not
of open-ended questions designed to enable well understood beyond people identifying as
participants to express their ideas and share their Black, Asian and Minority Ethnic.
knowledge and understanding of the topics under
IMPLICATIONS FOR PRACTICE
discussion and their wider concerns. In addition,
the whiteboards were used to capture comments (by the authors)
from the day. Four speakers presented on the As a result of the evaluations and discussions held
symposium’s two themes: at the symposium, an action plan was created. The
• Theme one covered diverse approaches to action plan highlighted raising public awareness
autism within the ethnic minority community through community engagement, improving
(cultural, religious and ethnic). access to information for parents and culturally
aware autism education for professionals and
• Theme two focused on paving the way to future ethnic minority communities.
approaches.18 Middletown Centre for Autism Community Inclusion 19
TARGETING IEP SOCIAL GOALS FOR CHILDREN WITH
AUTISM IN AN INCLUSIVE SUMMER CAMP
BACKGROUND RESEARCH METHODS 1–3 months after the summer camp. Probe data
were recorded for ten minutes in vivo or via
Most children with autism face challenges Three boys and one girl, aged 7–14 years, were iPhone recordings.
in the development of social skills, despite a included in the study. All had a diagnosis of
desire to form friendships. Goals that target autism and received special education public The summer camp was inclusive and held on a
the development of social skills are essential for school services. The paper provides detailed university campus. Participants were separated
children with autism as they improve long-term descriptions of each child: into different age groups, with 10–15 children per
outcomes, such as improving mental well-being, two staff members. Each day ran from 9 a.m. to
participation in leisure activities, academic Participant 1: The main areas of concern in 3 p.m., and activities included swimming, dance,
achievement and employment opportunities. relation to his social skills were refusal to play art and gymnastics. The children with ASD were
group games, disrupting games and becoming allocated a one-to-one paraprofessional who
Several research studies have found that peer- upset during games. He had no goals in his IEP was an undergraduate studying psychology and
mediated interventions in inclusive settings are that targeted social skills and was not receiving who had undertaken a course in ASD. They were
effective in improving socialisation and language any specific intervention to facilitate social supervised by experienced graduate students.
development. Research has also indicated that interactions.
paraprofessionals can be trained in the facilitation Intervention during the two-week summer camp
of social interactions between children with Participant 2: The main areas of concern in incorporated individualised positive behavioural
autism and their peers. There is concern, however, relation to his social skills were lack of initiation support (PBS) strategies that included:
that regression in skill development can occur of interactions and delayed echolalia. He had one
IEP target related to social skills, which was to • priming – introducing the child to the activity
during school summer holidays when there is
improve eye contact. and explaining the rules.
less opportunity for interaction. Some studies
have examined the effectiveness of intervention Participant 3: The main areas of concern in • peer mediation – typically developing peers
facilitated by paraprofessionals taking place relation to her social skills were lack of interaction were selected to support the participants
during summer camps, but no research to date with peers and difficulties in waiting and turn with autism by helping them to engage in
has addressed the possibility of incorporating IEP taking. She had some verbal language but used interactions, take turns, etc.
goals for social skills into these summer camps. alternative and augmentative communication
• self-management – the participants were taught
systems in school. She had one IEP target relevant
RESEARCH AIMS to social skills, which was to improve her ability
to record their own achievement or absence of
the targeted social behaviours.
The current study aimed to answer three research to take turns when playing with a peer or adult.
questions: Intervention procedures for each participant
Participant 4: The main areas of concern in
1. Would students with ASD make progress relation to his social skills were lack of interaction Participant 1: His IEP goal focused on
on IEP social goals during an inclusive two- with peers and limited responses to questions engagement in non-preferred activities with
week summer camp with interventions being asked by adults. He had two IEP targets peers. He was primed for activities and taught to
implemented by a paraprofessional? specifically on the development of social skills, record his achievements on a self-management
which were to improve eye contact and infer sheet.
2. Would gains in social goals maintain until the what another person is thinking, and to tell three
following school year and generalise to the details about a recent experience. Participant 2: His target was to improve eye
child’s natural settings (i.e. home and school)? contact, and this was facilitated through peer
A concurrent multiple baseline design was used mediation and self-management techniques. He
3. Would any collateral gains be evidenced to collect data across home and school settings. used a clicker to record every instance of eye
following the implementation of an intensive During the two-week summer camp data was contact.
social intervention during an inclusive collected several times each week and then
summer camp? follow-up data was collected at home and school20 Middletown Centre for Autism Community Inclusion 21
APPROACHES TO INCLUSION AND SOCIAL
PARTICIPATION IN SCHOOL FOR ADOLESCENTS
WITH AUTISM SPECTRUM CONDITIONS (ASC) –
A SYSTEMATIC RESEARCH REVIEW
Participant 3: Her IEP goal was to improve turn • Supervised paraprofessionals can successfully BACKGROUND RESEARCH METHOD
taking, and this was encouraged through peer support the attainment of social targets.
mediation techniques. This article is based on a systematic research In keeping with the research aim, inclusion and
• PBS strategies are effective for a wide age range review which identified approaches towards exclusion criteria were applied to a database
Participant 4: His IEP goal was to give three of children. inclusive education for adolescents with autism search of journal articles. This was to ensure
details about a past experience to a conversational without an intellectual disability (ID). The study inclusion of research studies that were specific
partner. Priming consisted of reminding him • Systematic social interventions at summer
included a review of the definitions of inclusion, to autism, social participation and inclusion in
of this goal. Peer mediation was used in a camps may be beneficial for children with
whose perspectives are taken into account, education and focused on post-primary students
question and answer game in which peers asked autism and help to prevent regression in skill
approaches and their implications from a range of with ID. Research abstracts were reviewed and
questions to encourage him to give details. development.
research articles. sorted using the inclusion and exclusion criteria
Self-management consisted of the participant • Summer camps offer a valuable opportunity set out below.
independently ticking a sheet each time he for social interactions with peers, and these RESEARCH AIM
verbally shared a detail with peers. social skills can be generalised to other settings The aim of the study is to identify, describe and
All four participants received individualised months after the summer camp has ended. analyse different research approaches to inclusion
tangible rewards when they achieved targets. • The intensive intervention provided at summer and social participation for autistic adolescents.
The specific details on data collection methods camps may be an important factor in the
generalisation and maintenance of social skills. Table 2
(scoring and recording) are provided in the paper, Inclusion and exclusion criteria
and the measures taken to ensure fidelity and Children were able to apply the learned skills
reliability are also explained. to new peers and in novel settings after the
summer camp. Activity Inclusion criteria Exclusion criteria
RESEARCH FINDINGS Selection 1. Social participation in 1. Age group (infants, children in
• The methods used and the inclusive setting school and/or society Kindergarten primary or
All four participants made improvements in were effective in improving the social skills elementary school, preschool, or
their IEP social targets, and they all maintained of children with varying cognitive abilities, adults > 20 years old)
this progress at follow-up across school and/or suggesting that even those with greater support
2. Inclusion in school and/or society 2. Intellectual disabilities
community settings. The four participants also needs can achieve social targets in an inclusive
made collateral gains in initiating interactions setting. 3. Age group (high school and 3. Diagnosis other than ASC
and in engaging with peers. secondary school, adolescents
Full Reference > 11 years old, young adults
IMPLICATIONS FOR PRACTICE Koegel, L.K., Glugatch, L.B., Koegel, R.L. and < 21 years old and student group in
(by the authors) Castellon, F.A., (2019). Targeting IEP social goals mainstream school, general
for children with autism in an inclusive summer education settings, no specifically
• Children with autism can achieve IEP social defined age group
camp. Journal of Autism and Developmental
targets more quickly in inclusive settings than 4. Articles mainly focused on
Disorders. 49(6), pp. 2426–2436.
in non-inclusive settings. communicative or behavioural
• Unstructured settings, such as a summer camp, development (i.e., medical or
can still foster positive social outcomes if clinical studies) or only in non-
carefully designed social instruction methods educational contexts
are used. 5. Systematic research reviews without
a specific focus on inclusion
6. Book reviews22 Middletown Centre for Autism Community Inclusion 23
After sorting the articles using the selection satisfaction with social support. Their findings One study evaluated social interactions for autistic Also, teachers assumed students with disabilities
process, eighty-five articles were reduced to a suggested that rumination by a young person students who use augmentative and alternative were not the responsibility of the general
final sample of fifteen articles to be included in on their own autism-related difficulties may communication (AAC). Results suggest students education system. Researchers reported that
the final review. These articles were examined, be linked to a greater risk of depression and mostly interacted with educational professionals teachers generally professed a lack of knowledge
analysed and categorised using a thematic analysis declining participation in social activities after and played a passive role within interaction. about educating students with severe disabilities.
process. Articles were categorised into four high school. Additionally, students with AAC devices relied
research areas: articles dealing with topics such on non-verbal cues such as facial expressions and Previous students reported that teachers indicated
as social anxiety; best practice for inclusion and Another study explored social anxiety among gestures within interactions. positive attitudes towards inclusion and those
participation; the role of the teacher; and autistic individuals with autism and reported a correlation with modern views on integration were more
individuals’ own perspectives regarding inclusion between adolescents with less severe autism and One study’s results that evaluated social likely to report high levels of inclusion within
or participation. high social anxiety with less social engagement. interaction by reviewing different interventions their school; however, regardless of these positive
Results also indicated that severe social anxiety suggested peer-mediated interventions (PMI) attitudes towards inclusion of autistic students,
RESEARCH FINDINGS was only weakly correlated with ‘feeling lonely’, showed potential. Furthermore, another study teachers expressed concern about potential
suggesting that those with less severe autism suggested within this paper highlighted that problems associated with integrating autistic
Nine of the articles defined inclusion as ‘being symptoms did not seek few social interactions. specially designed coaching strategies and students.
socially accepted in the context and socially programmes in sports education were critical for
participating in the group and in the school’. A further study explored how unstructured fostering socialisation and developing social skills. Fourth research approach: autistic individuals
The remaining six defined inclusion as ‘being and structured social participation changed own perspective/view on their social and
physically placed in mainstream classes, leading from before to after high school. They defined Third research approach: teachers’ perspectives, academic participation in school and society.
to social participation’. Overall, the articles unstructured as spending time with friends or approaches and training
co-workers and structured as attending social A study that explored autistic adolescents’
highlighted physical placement in mainstream
events at a place of work or socialising with sports A study reported that teachers aimed for autistic perspective of anxiety induced by pressure
classes supporting social participation as well
teams. Results suggested no average change in students to develop socially, make friends and from taking part in social activities found that
as being socially accepted in the wider school
participation after high school other than some interact with peers. Additionally, teachers were those with more severe autism symptoms were
context. One of the key factors for successful
individual variability. For those individuals adamant about supporting typically developing more likely to experience greater interest and
inclusion and social participation of autistic
participation in structured social activities was students to behave in a more accepting way enjoyment in leisure than those with less severe
students is a united whole-school approach
reduced after high school. Young people with towards students with disabilities. autism. Adolescents with higher social anxiety
towards inclusion.
more structured participation in high school reported higher levels of in-the-moment anxiety
In total, fifteen articles focused on three were more likely to experience increases in while engaging in social activities compared to
perspectives to inclusion and social participation unstructured social participation afterwards. In those with lower levels of social anxiety.
in education: the students’, the teachers’ and the addition, a high level of internalising symptoms
parents’ perspectives. for autistic adolescents during high school
The research approaches to inclusion and their predicted increased social isolation after leaving
implications for practice were categorised into high school.
four themes. Overall, anxiety appears to affect adolescents’
First research approach: social/academic ability to participate and engage in social
inclusion and participation – level of anxiety activities.
One study examined the relationship between Second research approach: methods and/or
depressive symptoms and psychosocial development of best practice for inclusion and
constructs such as insight into autism symptoms, social and academic participation for individuals
rumination, desire for social interaction and with autism in school and society24 Middletown Centre for Autism Community Inclusion 25
A REVIEW OF COMMUNITYWORKS CANADA®:
TOWARD EMPLOYABILITY AMONG HIGH SCHOOL–AGE
YOUTH WITH AUTISM SPECTRUM DISORDER
Students reported some situations and • Strategies for managing anxiety and research BACKGROUND RESEARCH AIMS
environments within school to be safer, approaches to improving social skills are
particularly those involving the teacher’s among some of the measures available to young Many autistic students leave secondary school To extend understanding of the vocational
presence. Additionally, opportunities to engage people. Direct interventions such as social-skill without the skills, experiences and supports support needs of secondary school–aged autistic
in team sports and activities that included training designed especially for the individual necessary for work. Data from the United States students, this paper reviewed anonymised
engagement with their peers were regarded may have a positive effect. National Longitudinal Transition Study-2 found evaluations of a pre-vocational programme called
positively. In comparison, school corridors and that the vast majority of autistic high school CommunityWorks Canada® across three years.
changing rooms were associated with negative • Social interaction opportunities should be students (85%) did not have an after-school
carefully planned rather than hoped for. or summer job during the previous year, and The aim of CommunityWorks Canada® is to
feelings such as fear and worry. develop and reinforce socially appropriate
Additionally, students with AAC should have after leaving high school only about half were
ongoing access to appropriate AAC systems so interaction and workplace specific skills. It is a
IMPLICATIONS FOR PRACTICE employed outside the family home. Two possible
they can be active communicators. explanations are: 1) relative to neurotypical peers, government-funded thirty-hour pre-employment
(by the authors) programme delivered each week after school for
autistic students require more time to develop
This systematic review highlights several key • Generic training for all school staff about twelve weeks to autistic students aged 15–21 years
the skills needed in the workplace, and 2) autistic
implications for future practice: students may not always be appropriate. old. The autistic students work in partnership
students need more time to adjust to the new
teachers reported a preference for informed, with neurotypical volunteer peer mentors in
• Whole-school inclusion requires all staff to environment.
targeted training for groups working directly public, private and not-for-profit community
have a clear and shared understanding of the with autistic students. Authors identified a caveat in research focused on businesses that are potential areas of interest for
aims and expectations of inclusion within their vocational preparation for this population. They future employment for the autistic student.
school. This must also be supported by senior Full Reference
found that previous literature reviews focused
management. Lüddeckens, J., (2021. Approaches to Inclusion on job tasks and specific job instruction rather RESEARCH METHODS
• Further understanding of the ways in and Social Participation in School for Adolescents than on pre-employment skills and the social Data was collected from programme
which social activities may influence the with Autism Spectrum Conditions (ASC) — communication skills needed for engagement evaluations at seven sites in five provinces in
internalisation of symptoms is important. a Systematic Research Review. Review Journal with co-workers and customers. Cumulatively, Canada between April 2015 and March 2018.
They are amenable to intervention and could of Autism and Developmental Disorders. these studies reveal that pre-employment The evaluations consisted of pre- and post-
potentially improve mental health. (8) pp.37–50. training needs to support autistic students to programme standardised questionnaires,
develop skills in relation to the task/work, social satisfaction surveys and qualitative interviews
communication and adaptive behaviours as that explored stakeholders’ (autistic students,
not having these skills are a barrier for autistic parents, neurotypical peer mentors and
students. employers) perceptions of the programme and
its impact. Comparative analysis of pre- and
post-programme scores was conducted using
quantitative data management software (SPSS).
The following standardised tools were used:
Pre-CommunityWorks Canada® Post-CommunityWorks Canada®
Peabody Picture Vocabulary Test–4 (PPVT-4) Work Readiness Inventory (WRI)
Waisman Activities of Daily Living (W-ADL) Social Skills Improvement System (SSIS)
Social Responsiveness Scale–2 (SRS-2)26 Middletown Centre for Autism Community Inclusion 27
At conclusion of the programme surveys were RESEARCH FINDINGS Canada® programme, and over 50% of parents to work readiness and employment. This is in
distributed to autistic students, parents, peer indicated that there was noticeable gain in their keeping with research that recommends pre-
mentors and community partners/employers All participant groups reported skill development adolescent’s communication and social skills. employment activities in secondary school.
to determine overall satisfaction with the in the areas of work preparedness and social
programme. Additionally, the programme skills. Community partners/employers and peer The programme provided initial exposure to
evaluators interviewed a subsample of eight mentors identified gains in personal knowledge work experience and a way of overcoming being
There was a significant decrease in all scores and attitudes about autism. They reported unemployed as well as a pathway to employment.
autistic students, nine parents and seven peer on the WRI, indicating fewer work-readiness
mentors. NVivo data management and analysis appreciation for what they generally described
concerns. Also, survey results from autistic as a frequent strong work ethic among autistic Qualitative and survey data identified social
software was used to code the interviews and to participants and their parents indicated growth in communication skill gain. These gains were not
generate themes. participants. They also reported that their
work-readiness skills. involvement in the programme enhanced their captured on the SSIS. This amplifies the need for
knowledge about autism while simultaneously sensitivity when using evaluative instruments to
Post programme over 70% of autistic participants assess progress for autistic youths and preparing
237 autistic youths Average age was 17 decreasing worries and negative stereotypes
indicated they were more prepared to find a and building employment-oriented social skills.
years associated with working with autistic individuals.
job, and 71% agreed or strongly agreed that
Majority were male they developed job-related skills and abilities, All neurotypical peer mentors agreed or strongly Parental expectations for their autistic
(85%) and their learned the importance of teamwork in the agreed that participation in the CommunityWorks youth’s vocational future, including increased
primary language was workplace, how to interact at work and the Canada® programme had positively affected them independence and integration within the
English (95%) importance of trustworthiness and the need by deepening their understanding of autism. community, benefited from the young autistic
to be reliable in the workplace. Involvement in Other identified gains included an increase in person participating in this programme.
the programme enabled autistic students the social connections, with subsequent improvement Neurotypical peer mentors and community
Two thirds of opportunity to explore different types of jobs in social efficacy and mastery. These gains partners benefit from participation in work-
participants (67%) and job tasks. It also boosted autistic students’ increased personal confidence as well as perceived readiness programmes. This is helpful in creating
had no previous work self-confidence in relation to getting a job, connections with autistic peers. more diverse acceptance in workplaces and
experience, although coping with employment, working with others,
Follow-up phone calls with autistic participants communities.
80% indicated a desire self-advocacy, understanding and managing
to obtain employment. emotions, undertaking roles and completing and/or their parents were attempted at three, School-based activities focused on nurturing
tasks. Developing these skills are perceived to be six and twelve months post-programme to work exposure and the development of skills
156 peer mentors 75% were female
integral to ultimately finding a job. inquire about post-secondary education and are needed for the workplace. These processes
57% attending volunteering or paid employment. A significant are integral to future employment for autistic
Over 80% of parents agreed or strongly difference was found only for employment rate:
high school were students.
agreed that their autistic youth had gained an the employment rate for autistic participants
recruited through
understanding of necessary job skills, and almost increased to approximately 20%; however, most Full Reference
advertisements placed
half indicated improved understanding of career of the participants (83%) worked less than twenty
on volunteer websites, Nicholas, D.B., Mitchell, W., Zulla, R.,
fit. hours per week, and all were in entry-level
word of mouth and Solomatin, E. and Qi, S., (2019). A review of
social media Although no significant changes in overall positions (e.g. food delivery, dish washer and CommunityWorks Canada®: toward employability
85 community Not-for-profit social skills were reported on the SSIS, autistic yard maintenance) with the vast majority (89%) among high school–age youth with autism
partners/employers organisations (75%) participants and parents indicated positive earning minimum wage. spectrum disorder. Global Pediatric Health. 6:
changes. Seventy-one per cent of autistic 2333794X19885542.
public businesses IMPLICATIONS FOR PRACTICE
students agreed or strongly agreed that their
communication and social skills as well as (by authors)
private businesses
understanding of social cues had improved as a Autistic students experience more challenges
result of engagement in the CommunityWorks compared to their neurotypical peers with regard28 Middletown Centre for Autism Community Inclusion 29
COMMUNITY LED CO-DESIGN OF A SOCIAL
NETWORKING PLATFORM WITH ADOLESCENTS
WITH AUTISM SPECTRUM DISORDER
BACKGROUND game design. To be eligible to take part in this were interested in technology to socialise and approach in software, many software designers
study participants were required to have been exchange ideas through monthly meetups. The face challenges in adopting these approaches
Autistic adolescents face challenges in forming diagnosed with Asperger’s or ASD without researcher planned and organised the monthly when designing for groups with special needs.
positive friendships. Although social networking language or intellectual impairment. Participants computer club meetings, which involved liaising
sites can provide a platform for autistic people to were recruited though channels such as Facebook with parents on registrations and providing Both community immersion and co-design
communicate and socialise with their family and and a monthly newsletter. Five participants mentorship for the club members. The computer approaches require significant time investment
friends, many autistic people and their parents/ were recruited at the start of the study while one club ran for eight months prior to the first co- and skills of the researcher/designer to carry out
carers may avoid such sites due the potential participant joined from workshop three onwards. design workshop. This immersion approach in the activities. Organisations may not have the
risk of inappropriate content and cyberbullying. Participation was voluntary and they could the research environment provided the researcher resources to invest in long hours of community
A local community such as a support group withdraw at any time. with key insights that were invaluable in the immersion prior to the design phase. In addition,
may provide a familiar and regulated social research study and enabled the participants to organisations may not have trained designers
networking site for autistic individuals. The researchers conducted seven co-design become familiar with the researcher and study who could adapt co-design methods to suit
workshops with six autistic adolescents over prior to it commencing. Everyone involved in the the capabilities and needs of autistic people.
This paper presents the results of a study that a period of eight months. The team (which Organisations developing software for autistic
involved the development of a social networking study, i.e. the autism support group, participants,
consisted of the researcher and participants) caregivers and the researcher, was able to establish people can consider partnering with existing
platform based on the needs of a small group of exchanged ideas and communicated through community groups, such as support groups or
autistic adolescents and their parents/carers. The and understand the shared goals and potential
group discussions and drawings. Each workshop outcomes of the study. schools, in co-designing the software. Co-design
paper further examines what potential benefits lasted for two hours and was recorded. All methods and principles can be shared with
such a system could provide and discusses the workshop conversations were transcribed and personnel from the community groups and they
RESEARCH FINDINGS
role of autistic adolescents as participants in the analysed together with other items such as will conduct the co-design workshops with the
co-design process and how other stakeholders, drawings and voting results using thematic In this study the community-led social platform target users. Extensive community immersion
such as community support groups and/or analysis. Thematic analysis allowed the researcher aimed to provide a safe and localised environment would not be required in this approach.
parents, play a critical role in supporting the co- to identify emerging concepts and to understand for the autism group members to socialise and
design process. participants’ concerns. At the beginning of interact online. Within this study participants A person with attention deficit hyperactivity
every workshop the results were shared with felt safe to comment and post on the community disorder (ADHD) may have different needs
RESEARCH AIM social networking. and wants in relation to technologies and their
the participants. A member-checking method
was employed, which permitted participants to personal situation may inspire a different genre of
The aim of this study was to investigate how The findings from the study suggest that:
amend any misinterpretations of the data points designs.
autistic adolescents can be involved as co-
designers in building a community social documented across the study and the results. (1) participants demonstrated self-advocacy skills Full Reference
networking site (InterestMe) through an iterative through an iterative co-design process.
A community immersion approach was Zhu, R., Hardy, D. and Myers, T., (2021).
software design process over an extended period
adopted. The researcher joined the support (2) a safe and familiar environment encourages Community Led Co-Design of a Social
of time.
group ten months prior to the first workshop. active participation from autistic adolescents as Networking Platform with Adolescents
RESEARCH METHODS The researcher participated in monthly co-designers. with Autism Spectrum Disorder. Journal of
committee meetings and social and fundraising Autism and Developmental Disorders. pp. 1–14.
The study implemented the key principles of (3) parents, community groups and fellow
events organised by the group. Attendees of
shared outcomes and community immersion participants play a pivotal role in engaging autistic
the autism support group’s activities included
from Participatory Action Research (PAR) as adolescents on a social network.
autistic members and their parents/carers.
overarching principles. Six participants (five The researcher developed a computer club for IMPLICATIONS FOR PRACTICE
boys and one girl) were all members of an autism the autism support group with the support of
support group and were aged 14–16 years old. (by the authors)
an executive committee. The computer club
Only one participant had prior experience in acted as a facility for autistic adolescents who The authors highlighted that although there is
an increasing call to adopt a user-centred designYou can also read
