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Quality of Life: Reducing Anxiety

The Value of Compassion

This post is a reflection of the #SENexchange discussion on Quality of life and our favourite things. It took place during the Coronavirus crisis in April 2020. Our definitions of what education, life and security look like have been tested. Education was redefined overnight, and the structures and routines we built over the years have been removed. We all weather the storm in different boats. The human experience binds us. There is a drive amongst the SEN community to ensure compassion and wellbeing are at the heart of education.

As a team we are passionate about the future of our children, their quality of life and chances to succeed. There will be pressure to “catch up”, “close the gap” and squeeze “missed learning” into condensed periods when we return. We need to ensure the humans at the heart of our education system become the centre of the curriculum. The crisis has shown those “low-skilled” workers and key workers are far from those professions held up by the government and the media as role models. The priorities of economic behemoths are crass. The value of compassion has risen, the SEND community are some of the most compassionate educators. When we work together we can show the approaches that are most effective in supporting children to thrive against adversity.

Here is a 5790 word article on understanding quality of life for autistic individuals from a neurodiversity-affirming perspective:

Understanding Quality of Life for Autistic Individuals: A Neurodiversity-Affirming Perspective

Introduction

Autism is a complex neurodevelopmental condition that manifests itself uniquely in each person. As researchers seek to understand quality of life (QoL) for autistic individuals, embracing neurodiversity as a framework is essential. Neurodiversity values the inherent worth of all minds and experiences. This article examines research on factors impacting QoL, incorporating autistic self-advocates’ perspectives to conceptualise well-being beyond surface-level measures. A nuanced, autistic-led understanding of QoL can empower individuals and drive more inclusive support systems.

The Complexity of Measuring QoL in Autism

Beyond Standard Deficits: The Role of Mental Health

Research consistently shows that autistic individuals report poorer QoL scores compared to non-autistic peers. However, newer work indicates this gap owed more to higher rates of anxiety, depression and trauma than autism itself. Addressing co-occurring conditions substantially enhanced QoL. This highlights mental wellness as crucial to living well alongside autism.

Incorporating Lived Experience

Autistic self-advocates emphasize the limitations of externally-focused tools. QoL extends beyond basic functionality to encompass acceptance, autonomy, meaningful roles and relationships aligned with personal values. Researchers collaborated with autistic advisors to develop the Autism-Specific Quality of Life (ASQoL) module addressing self-determination and belonging. Listening to autistic voices enhances understanding.

Development of the ASQoL

The ASQoL emerged from extensive consultation to capture domains like sensory experiences, special interests and friendships overlooked in existing scales. It complements the WHO’s tools assessing physical, psychological and social functioning. Research utilising both indicates mental health, not autism itself, predicts poorer scores. Novel discoveries require autism-affirming perspectives to boost innovation.

Areas Impacting Perceived Well-Being

Physical Health and Sensory Processing

Physical health greatly impacts QoL, yet autistic individuals face barriers accessing appropriate care. They are at heightened risk for certain conditions due to sensory challenges, genetic predispositions, or comorbid mental health issues. Targeted support is crucial.

Autism involves atypical sensory processing that can overwhelm the nervous system. Autistic people may over- or under-respond to stimuli like loud noises, bright lights, temperatures, textures, and tastes. This hyper- or hyposensitivity can disrupt daily life.

Sensory triggers may cause painful overload, anxiety, gastrointestinal distress, sleep issues, or self-injury in attempts to self-regulate. Chronic conditions like eczema often co-occur due to sensory system differences.

Insensitive environments and lack of understanding have serious consequences. Social isolation may ensue from avoiding overstimulating contexts like crowded spaces or parties. Mental health can deteriorate over time from persistent distress.

Tailored accommodations could transform quality of life. Sensory diets, involving regular deep pressure, oral input, vestibular stimulation and joint compressions, support self-regulation. Noise-cancelling headphones, weighted garments, fidget toys, and calming areas like nests aid coping.

Medical care must embrace autism’s complex relationship with the physical body. Doctors require autism education to recognise common comorbidities, understand communication differences, and make exam rooms low-arousal sensory friendly spaces.

Holistic self-advocacy strengthens well-being. With guidance, autistic individuals can learn healthy coping strategies, advocate needs respectfully, and manage chronic conditions proactively through diet, exercise as tolerated, and understanding personal sensory zones.

Together, targeted accommodations, autism-competent healthcare services, and self-advocacy empower flourishing lives alongside innate autism traits and physical differences.

Leisure, Enjoyment and Self-Care

Meaningful free-time centered around favored hobbies and pursuits improve mood and social bonds. Accessible community clubs and spaces facilitate this. Self-care, rest and enjoyment enhance QoL as much as productivity.

Education and Employment

Neurodivergent learning profiles necessitate accommodated education valuing varied strengths. Post-school, meaningful vocational supports are key for fulfillment, purpose and financial security integral to adult well-being.

Relationships and Social Connectedness

Authentic relationships and acceptance of autistic traits matter profoundly to self-esteem and belonging. Online and local community aid connection for isolated individuals. Inclusive friendships enhance life quality.

Understanding Variability in Outcomes

Contributing factor interactions produce great diversity in lived experiences. Outcomes depend on supports and barriers within environment, family, culture and wider society. QoL extends beyond deficits to thriving as a valued member of community. Viewing autism through a strengths lens transforms lives.

Quality of Life and SEND: SENexchange Discussion

Download the Wakelet PDF of the discussion below. Please share if you think this would be useful to anyone.

Do you or your child have a favourite object that holds significance to them and reduces anxiety?

Do you or your child have a favourite object that holds significance to them and reduces anxiety? Quality of life

Many children and adults have an object that they use as a calming, grounding or anxiety-reducing tool. These often form the core of the child’s self-regulation or coping strategies. Often these are objects that link to positive memories like bears. Others are more mundane like pens, pencils etc. Anne Heavey from Whole School SEND states how for her scents are used to calm and help her feel secure. Using scents as calming or coping strategies is commonly used. Lavender is known to help calm. Some toys, weighted bags etc are infused with this fragrance. If you visit my office there is a Lego pirate who sits on my desk. He has been with me for years.

A home educator shared that her son takes his Balou bear with him to appointments and new places, in the car etc. Sadly teachers putting Balou bear in a cupboard didn’t help my son’s anxieties. She makes a great point that transitional objects must stay with the child.

How can certain objects help people engage with the world?

Quality of life SEND How can certain objects help people engage with the world?

Many people use objects to create a sense of security. Objects give people a concrete link to their home or specific people. This can keep that place real to them when they are away. Quality of life and security cannot be separate.

Access to a favoured object can ease transition. These are items that belong at home so they reassure that home will return. Susan Griffiths works with one child has a backpack with a certain number of objects in. This gives him an element of control over his day. Control and choice are important in reducing anxiety.

An educational physiologist shared an example of how a child they work with uses a teddy bear to talk to. Having this predictable, familiar object relaxes her. In turn, her expressive language improves when she discusses with it.

This interview with Sarah Hendricks explains the quality of life for autistic people. What one person would describe as a good quality of life does not reflect on everyone’s view. A place and person that allows them to relax is important. Callum a KS2 Pastoral Leader in SEMH stated you can’t beat a bit of Maslow! I think the sense of belonging is so important.

Ms Barnsley Head of SEND for the Victoria’s Academy Trust contributed that happiness, good physical and mental health, choice, control, positive relationships and experience, sense of belonging all need to exist. Choice of activity, food, leisure, clothes, social activities, and friends all need to be present.

Start to talk to a counselling and mental health organisation added a person needs to feel and have:

  • safe & secure
  • good pain management
  • sense of worth
  • love, care & kindness
  • connections, choices
  • not feeling trapped & helpless
  • support
  • Feeling part of a community
  • being loved for who you are
  • financial resources to meet practical needs

Dr Chris Moore of EPinsight, added being able to understand and regulate emotions. This is fundamental for having positive relationships, taking risks with learning and developing resilience when faced with difficult situations.

What opportunities for making choices can be built into a person’s day?

Kirsty Walsh a Teaching Assistant / Send. Access Arrangements Coordinator. Outlined the importance of building choice into a range of activities. How they want to spend their relax time. What do they want to communicate about? Choice of transport. Choice of whom to visit and what route to take.

Conclusion

A neurodiversity frame celebrates humanity’s naturally variegated minds. Creating accessible inclusive services, policies and societal views uplifts marginalised people. Recognizing autism as simply a style of cognitive processing validates innate self-worth. Empowering autistic voices in research nurtures understanding, compassion and well-being for all.

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