Who: Klag & colleagues
Journal: Families in Society: The Journal of Contemporary Social Services
Title: Creating a Resilient Ecosystem for the Employment of Autistic Individuals: From Understanding to Action
one autistic individual (SM)
one social worker
one family member of autistic individual
Autistic people are often unemployed, underemployed, or employed in positions which don’t utilise their skills & which cause significant stress, which has long term negative impacts on mental health.
“That is the question that I am asking myself. I know that I have a need to learn… I need a flexible schedule… If I don’t have any more energy at 10:00 in the morning, well, then I stop. And if I feel better at 9 pm, I will work at 9 pm… I must work part-time… definitely… It’s certain that I will never be able to do 40 hours per week… My big difficulty is that in HR, there is no part-time. So I have to play the “adaptive measures” card… I am in a situation of “handicap.” That is not pleasant… It’s not fair. It emphasizes the fact that I am different. You don’t want to help me, but you are forced to help me. I don’t want to be in a position to have to force people to help me… [SM]”
At the time of interview, SM was working part-time in a role she is overqualified for. She was also recovering from a period of burnout. She described periods of unemployment due to sensory sensitivities, being unable to fulfil a specific work schedule, & health problems. There are multiple factors which influence her ability to find and maintain work.
Singular actions, people, or programs help at particular moments in time & are appreciated, however, they offer limited long-term change.
There are a complex set of considerations within and around SM which impact her ability to find work.
These included her family situation, social relationships, mental health, work and employer support, and requirements for ancillary services.
Even times when everything seemed to align were fragile, and could collapse with a setback in her mental health status or with a rupture in support services, which impacted her ability to work, and then her ability to pay rent, and her overall wellbeing.
This indicates why programs which aim to enhance autistic peoples ability to enter employment seem to have had no impact on employment rates over time.
There are further variables which may be impacting autistic peoples ability to find work;
Do employers genuinely recognise the unique strengths that autistic employees bring to a job, or do they consider inclusion to be “doing good” but “settling for less”?
What are their inclusion policies, and were they being enforced & authentically respected (instead of tokenistically applied)?
Can an employers desire for sustainability, profit, and/or expansion co-exist with a desire to be inclusive?
Do government policies support sustained employment for autistic individuals and are the policies actually and appropriately enforced?
“Inclusion of neurodiversity necessarily calls for a culture shift, to move from a culture of performance to a culture that is first and foremost centered on the human being.”
In order to increase the employment of autistic people, we must understand and account for not only the complex factors & patterns in an individuals life, but also all the ways they are connected.
Some influencing factors such as financial resources or particular health diagnoses may be easy to assess. However, others, such as organizational culture, industry norms, or underlying societal values may be substantively yet more insidiously at play. Any attempt to over-simplify the complexity surrounding the employment landscape will limit the capacity for change.
An Integrated Portrait of the Autism Employment Ecosystem
The above diagram offers a sense-making framework for the multi-layered, dynamic and “messy” employment ecosystem for autistic people. Importantly, this framework shows the interdependencies among elements and levels of the ecosystem. It shows how employment success cannot be seen in isolation of other structures, systems and relationships in life and in society.
Individual-level behaviours and wellness are influenced by many interconnected factors at these levels.
Social determinants of health such as socioeconomic status, are integral constructs that are rooted in the interface between individuals and the ecosystem around them.
The Individual, Their Surrounding Microsystem and the Mesosystem:
Individual thoughts, feelings, and behaviours at the centre of the employment ecosystem impact and are impacted by an individuals mental and physical health.
An individuals overall status is also influenced by their “microsystem”, which is the day-to-day life which surrounds them; these are shown on the above diagram in visual icons, including home situation, finances, family, friends, doctors, support service providers, co-workers, & Wi-Fi.
There are interdependencies between these elements, shown on the diagram by connecting lines. This is called the “mesosystem”.
For SM, positive experiences at a given point are not only related to individual supports within her community, but also to the relationships among these supports; how well they worked together.
Towards the outside of the diagram is the “exosystem”. These are influencing elements which are no less important to an individuals employment prospects, but are less visible to the individual or to their day-to-day situation.
They include their family life and work situations, which affect available time, energy, and financial resources.
Also included are the structures & relevant resources in ones community, including employment support, health services, educational services, and other resources that may be recreational, spiritual, or relational, as well as urban design, local transport, accessibility, and community inclusion.
The macrosystem has been split into two categories; material elements & human elements.
The two outermost rings are the “macrosystem”. These reflect the “societal blueprint for a particular culture, subculture, or other broader social context” (Härkönen, 2007)
These elements & the relationships between them are critical as they “seep” into other layers of the system and thus into the individuals employment situation.
Material elements include public political systems and priorities, and economic, regulatory and legal systems, which drive the availability, nature, and flow of resources and services at community levels. They also include media & technology, which are global structural conduits that significantly affect how and with whom we communicate, organize, learn, think, and even feel.
Human elements include values, attitudes, beliefs, and ideologies that underpin other elements and levels of the ecosystem. These are so deeply engrained into society that they are often overlooked. This ring accounts for the fundamental and often unconscious biases and attitudes that society may hold with respect to autistic individuals. This impacts the policies, laws, & regulations which are implemented.
This refers to the incorporation of time.
The ecosystem is dynamic; this is shown through the visual metaphor of the kaleidoscope (signifying the shifting of the entire portrait as any level or element within it shifts), and the arrows (which represent the notion of evolution over time & remind us that events and transitions in earlier life affect the later life course.)
Ecological Systems Theory and Systems Thinking:
It is important to see the “whole” as a dynamic entity which is more than just the sum of single variables. There is interdependence among elements throughout the system.
Systems and Resilience Thinking: A Step Toward Change
“We must know the system to strengthen it.”
de Savigny & Adam, 2009
Therefore, we must assume that researchers, advocates, policy makers, or practitioners wishing to enact positive change must understand how the system operates and how shifts occur within it.
There are so many different factors affecting one another in the ecosystem, and each one operates with their own institutional and structural arrangements, and according to their own self-interests. Therefore, there is not any form of central top-down control of the system. The actions of each element will have impact elsewhere in the system.
Resilience thinking is focused on the systems resourcefulness & adaptability to maintain strength in the face of difficulties.
This ecosystem of autistic peoples employment has 4 orientations for understanding & action to advance positive resilience;
1) intentional change coalitions to enable
tight feedback loops
2) deep understanding of ecosystem drivers
and root causes of issues
2) deep understanding of ecosystem drivers
and root causes of issues
3) the targeting of leverage points versus programs
to influence change
4) evaluation mechanisms that enable collective learning
Intentional change coalitions to enable tight feedback loops:
“Because of feedback delays within complex systems, by the time a problem becomes apparent it may be unnecessarily difficult to solve. — A stitch in time saves nine.”
Important points in designing a coalition;
- Nothing about us without us: ensure a change coalition is led by or fully integrates autistic people
- In order to have a variety of thinking & perspectives, it is important to have individuals with a variety of experience, backgrounds, & interests. This should also involve individuals from all sectors (public, private, community, charity, etc).
- Ensure tight feedback loops, due to the impossibility of centralised control.
- Maintain the importance of a stakeholder group that is constituted by both change agents with an entrepreneurial orientation and other actors who deeply understand the administrative routines of pre-existing institutions and structures.
- There should be a balance between the dynamic of cooperation & respectful conflict; this is more conducive to transformational change than consistent agreement
Common understanding of ecosystem drivers and root causes of issues:
“Once we see the relationship between structure and behaviour, we can begin to understand how systems work, what makes them produce poor results, and how to shift them into better behaviour patterns . . . The system, to a large extent, causes its own behaviour!”
It seems really important that citizens & service users understand how these systems interact, but in reality knowledge is often limited.
Resilience thinking calls for the questioning of & shared understanding of the history of the cultural & societal elements which underlie such systems. Many of these elements actually serve to exclude autistic people, and have contributed to the current systems.
Deeply engrained societal values & attitudes can be harder to identify and challenge than material elements. Many of these biases are unconscious.
Casual loop diagrams can be utilised to provocatively question and engage in conversation around taken-for-granted worldviews, attitudes and beliefs by tracing the history of important events, understand levels of the ecosystem at which these events have emerged, uncover patterns of behaviour, and explain how the overall ecosystem structure has contributed to a particular critical issue.
Targeting leverage points versus programs:
“There are two different types of change: one that occurs within a given system which itself remains unchanged, and one whose occurrence changes the system itself.”
Watzlawick et al, 1974.
There are 4 key principles to consider in change coalitions.
1) It is important to confront the impossibility of controlling an entire ecosystem which has so many dynamic elements. Therefore, stakeholders must find ways to influence the system towards positive resilience.
2) It is important to look for and examine past example of disruption & change in the employment system for
autistic adults, because this information can be
used to inform future change.
3) Change should be sought via leverage points which trigger cascading change throughout the system. These can create lasting systemic shifts, rather than focusing change on only one area via singular programs. Change should aim to be integrated into standard operations, policy and recurrent funding structures of colleges and universities, and related employment agencies in order to increase the likelihood of lasting change, instead of the system reverting to its original form once short-term funding runs out.
4) Timing is everything: the most powerful leverage points for change are the ones which will face the most resistance. Therefore, it is essential to assess contextual readiness & openings for change. Stakeholders must be ready to act once a window of opportunity arises.
For example, the COVID-19 pandemic may have opened the door for a change towards flexible working, which disabled people have long been pushing for.
Evaluation mechanisms to support collective learning and adaptation:
“The richness of a systems inquiry is not about detail but about value.”
Imam et al., 2006.
Systems & resilience thinking is really well described, but there isn’t actually much information on how to apply & evaluate the effects of change efforts.
Traditional methods of evaluation, like economic metrics, might have limited value in complex, dynamic systems such as autistic employment. In this system, valid evaluation may take the form of something like a longitudinal study of changes in a local ecosystem, or of individual experience in life & employment over time.
Closing Reflections: The Road Ahead
“We always talk as a society about pressure, stress, etc… For us [as autistic individuals], it appears right away because we are more sensitive to that. We help amplify everything that is neurotypical… If we put things in place, everyone will benefit… We are often the “canaries in the coal mines.””
This paper has presented an ecosystem lens through which to understand and advance employment situations among autistic people. Hopefully, there will be continuing conversation on this subject which will lead to a variety of changes at local, regional, and national scales. Change can reverberate in any direction, and so change should begin in any area which has a window of opening.
SM states that steps toward true inclusion may benefit everyone within and outside the autistic community, as we seek true and sustained change.
Many such long-standing and seemingly impenetrable socio-political ecosystems have a tendency to resist change if left unabated and unchallenged.
Despite uncertainty and the imperative of long-term commitment, there is a need to “sign up” and engage with determination and optimism. After all, as Mintzberg and Azevedo (2012) note, “If we always do as we always did, we will always get what we always got”
“If we always do as we always did, we will always get what we always got”