I am James' mum

Rethinking Spectrum ‘Disorders’

When Labels Become a Societal and Personal Identity: The Impact of Psychosis and the Schizophrenia Spectrum

Severe psychosis is a complex and multifaceted condition that has long been misunderstood. This post collates expert opinions from Professor Robin Murray, Dr Soumattra Datta, and Associate Professor Keri Ka Ye-Yee Wong, to offer a deeper understanding of the schizophrenia spectrum and neurodiversity.

In his podcast for The Mental Elf, ahead of his keynote talk, Professor Sir Robin Murray reflects on his 50 years of experience as a psychiatrist and researcher. A key takeaway from his reflections is his challenge to the validity and existence of schizophrenia as a diagnostic label.

For decades, the diagnosis of schizophrenia has carried a heavy stigma, akin to other such deficient, permanent, and debilitating labels—both in society and within the medical community. A diagnosis of schizophrenia often meant a lifetime of institutionalisation or heavy reliance on medication, with little hope for recovery.

Given my current knowledge, I was alarmed by the idea of youth diagnosis. In a 12-minute video, Dr Soumattra Datta discusses the misdiagnosis of psychosis in adolescents. He explains the transient and differential understanding of managing psychosis in this population. Dr Datta refers to this as ARMS (At Risk Mental State) and suggests preventative and follow-up measures, along with the dangers of misdiagnosing. In fact, the prevalence rate of schizophrenia in children is only 1 in 10,000, so care must be taken when applying such labels. Additionally, he mentions that neurotypical children can have hallucinations too, often as part of an overactive imagination or transient experiences.

The Spectrum Concept

The concept of “spectrum” in mental health disorders, such as schizophrenia spectrum disorders, refers to a range of conditions that share common symptoms or characteristics but can vary in severity, presentation, and impact on daily functioning.

Keri Ka Ye-Yee Wong discusses the core symptoms of schizophrenia spectrum, how they can present, and how these symptoms will vary across individuals. The key takeaway is for families to explore symptoms and ask: Are the delusional beliefs held with conviction? When provided with an alternative explanation, does the child change their mind? Are the hallucinations intense, frequent, or impairing the child’s daily functioning? Have the symptoms persisted for more than 6 months?

Core Symptoms:

Delusions: Fixed, false beliefs, such as persecutory (feeling others are out to get them), referential (believing ordinary events hold special meaning), somatic (believing something is wrong with their body), or grandiose (having beliefs in special powers or missions).
Hallucinations: Perceptions of things that aren’t present, such as hearing voices, seeing things (e.g., ants crawling on the skin), or smelling non-existent odors. Heightened sensory perception can sometimes blur the line between real experiences and hallucinations.
Disorganized Thinking: This may manifest as jumping to conclusions or incoherent speech, making it difficult to follow a conversation or thought process.
Abnormal Motor Behaviors: This can range from hyperactivity to being mute, showing a lack of movement or response.
Negative Symptoms: These include a reduced range of emotions (blunted affect), poor eye contact, and social withdrawal.

The Impact of Diagnosis: The Dangers of Labelling and the Evolution of Psychiatric Understanding

Sir Murray advocates for a more nuanced understanding of severe psychosis. He encourages clinicians and the public to recognise that psychosis exists on a continuum, with varying degrees of severity and a range of potential causes. He emphasises that psychosis is not a static condition; it can change over time, influenced by treatment, environment, and individual factors.

He discusses the damage of prematurely diagnosing a permanent, degenerative condition. This can lead to hopelessness for those affected and their families. Professor Murray’s work over the past 50 years demonstrates the evolution of psychiatric thinking.

The Role of Neurobiology in Psychosis: Brain Changes and the Impact of Medication

A central aspect of Professor Murray’s work is his exploration of the neurobiological underpinnings of psychosis. Regarding the evidence of brain changes in people diagnosed with schizophrenia, he suggests that these changes are not necessarily indicative of a progressive, degenerative disorder. Traditionally, the brain changes seen in schizophrenia include a reduction in cortical volume and an increase in fluid-filled spaces, known as ventricular enlargement. These changes have been interpreted as evidence of a deteriorating condition. However, Professor Murray challenges this interpretation. He suggests that these brain changes may not be caused solely by the illness itself. Other factors, such as the effects of long-term medication, could contribute. Antipsychotic drugs, commonly prescribed to manage symptoms of psychosis, are known to have neurological side effects. Some studies have shown that antipsychotics can cause structural changes in the brain, which may be misinterpreted as signs of the condition itself rather than a side effect of treatment.

In addition to medication, lifestyle factors such as smoking, poor diet, obesity, lack of exercise, and high blood pressure all contribute to brain changes that can exacerbate the symptoms of psychosis. Professor Murray’s work highlights the importance of taking a holistic approach to managing psychosis—one that addresses not only the biological aspects of the condition but also the social, environmental, and lifestyle factors that play a role in its onset and progression.

Can Severe Psychosis Be Managed Without Medication?

While recognising that medication can be useful for some individuals, I strongly believe that it should not be the first or only line of treatment for any type of psychosis. As someone who currently relies on antidepressant and ADHD medication, I also know the dangers of over-reliance or the use of something not targeted to the problem.

When medication is prescribed without any other holistic intervention, there is a danger of an over-reliance on medication to address mental health, often overlooking the potential for recovery through non-pharmacological treatments.

Early intervention, psychosocial support, and therapies such as Cognitive Behavioural Therapy (CBT), Cognitive Remediation Therapy (CRT), and family therapy have been shown to be effective in reducing the severity of psychosis and helping individuals manage their symptoms.

Professor Murray advocates for a shift in focus from simply managing symptoms to addressing the root causes of psychosis. For example, he highlights the role of social isolation, drug abuse (particularly cannabis and cocaine), and childhood trauma as key contributors to the onset of psychotic episodes. By addressing these underlying factors, rather than just medicating the symptoms, individuals can experience a more meaningful recovery.

Reducing the Impact of Psychosis: Neurological Acceptance and Holistic Care

Accepting that neurological differences, such as those seen in psychotic disorders, should not be viewed solely through a pathologising lens and understanding that brain changes may be part of a person’s neurodevelopmental makeup, rather than a sign of irreversible disease, can lead to a more compassionate and less fear-driven approach to care.

In addition to medication, Professor Murray advocates for a range of interventions, including psychoeducation, lifestyle modifications, social support, and psychotherapy. By offering a broader spectrum of treatments, we can better support individuals experiencing severe psychosis, while also reducing the stigma and fear associated with psychological challenges.

Conclusion: The Importance of Rethinking Labels

The work of Professor Sir Robin Murray represents a pivotal shift in our understanding of severe psychosis. His research highlights the complexity of psychotic experiences, urging us to move beyond simplistic labels like schizophrenia and recognise psychosis as part of a spectrum of mental health conditions that can be managed with a variety of treatments.

Professor Murray does not focus solely on medication or accept a grim prognosis. Instead, he advocates for a more compassionate, holistic approach to care. This approach addresses not only the biological factors but also the psychological, social, and environmental influences that shape mental health.

The work of professionals like Professor Murray serves as a reminder that severe psychosis is not an inevitable degenerative disorder. It can be understood, managed, and even mitigated through a more nuanced understanding of the condition. A more personalised approach to treatment is essential for meaningful recovery and improved outcomes.

For further insights on managing schizophrenia spectrum disorders in children and adolescents, please visit Schizophrenia Spectrum Disorders in Early Childhood, Management of Psychosis in children and Adolescents and The Mental Elf Podcast.

Local links

Psychotherapist Mamta Bajaj is a psychotherapist, clinical trauma counsellor, and CBT therapist based in Bangkok. She runs a non-profit organisation in Thailand that facilitates discussions on gender-based and sexual violence trauma.

Access her Anxiety Mantras and techniques for managing intrusive thoughts at Three Point Counselling.

Additionally, she offers a free 20-minute counselling session for well-being, alongside CBT, ERP, Humanistic, Somatic, and Mindfulness therapies that align with the messages in this post, based on my own experience and thoughts on how best to support families facing crisis.

Exploring identity, being and belonging

This blog features the work of Dr. Joanna Grace from the Sensory Projects

Embracing identity with James

Through my disability inclusion studies, I learn more about people like us in the world around us. I find that a new approach to longstanding beliefs is necessary. As such, I advocate for celebrating neurodiversity and exploring fresh ideas to share experiences and find support.

Our identity is shaped by our thoughts and how we experience the world through our senses. Sensory substitution explains James’s heightened senses. His reactions—whether calming or overwhelming—are his way of communicating. Sensory substitution occurs when one sense compensates for another when overloaded, allowing information to be processed differently. Co-regulation is another key concept, where we support each other in managing emotions. Understanding and responding to James’s cues, I can help him feel more settled. I’ve noticed how my responses can help us stay calm and connected.

The Neurodiversity Movement

The neurodiversity movement is a paradigm shift and an essential movement happening now. It’s a global movement to reduce the stigma around neurodivergent brains.

Neurodiversity embraces the idea that neurological differences are simply variations of the human brain. This shift is crucial for people to be valued for their unique ways of thinking and being.

The Layers of Identity

I recently watched Joanna Grace’s discussion on identity, which sparked reflections on my experiences with James.

Joanna Grace offers a powerful framework for understanding identity through five key paradigms:

Essentialist Identity: Our inner, unchanging core.
Structured Identity: How our environment shapes us.
Performative Identity: Adapting to social expectations.
Discursive Identity: The power of language.
Beyond Identity: The evolving nature of self.

Joanna’s work has deepened my understanding of the identity that James and I embody as mother and son. Her frameworks show that the idea of identity is multi-faceted. Understanding of disability and neurodiversity is evolving. It is shaped by new knowledge and perspectives.

Embodied Identity: Recognising True Value

Joanna’s concept of embodied identity encourages us to look beyond physical limitations and recognise the true essence of each individual. This is especially important for those with profound and multiple learning disabilities (PMLD) and individuals with complex learning and developmental needs (CLDD), like James. In essence, I am James’s voice to the world, and our identities are intertwined—we cannot exist without each other. To help us better understand this, Joanna introduces two contrasting philosophical lenses: phenomenalism and Cartesian dualism.

We must look beyond surface assumptions. Just because a body behaves differently, we cannot assume that the mind within is absent or lacking. Each person has an inner life, a sense of being, a light that deserves to be seen.

Phenomenalism: The Embodied Self

Phenomenalism proposes that mind and body are not separate but deeply interconnected. It is rooted in phenomenology, a philosophy that centres on lived experience. In this view, consciousness is always embodied—we experience the world through our bodies.

For individuals who are non-verbal or express themselves differently, this view affirms that their inner world is real and present. Their movements, expressions, rhythms, and reactions are meaningful. These should not be dismissed as mere behaviour, but recognised as communication.

Joanna encourages us to engage with others in ways by learning to listen more deeply to alternative ways of being.

Cartesian Dualism: Mind and Body as Separate

In contrast, Cartesian dualism, developed by René Descartes, separates mind and body into distinct parts. Descartes famously wrote, “I think, therefore I am”, suggesting that thinking and reason are the core of identity.

This idea has had a lasting influence. It has often led society to value people based on their ability to think and communicate in conventional ways. For someone like James, this can be limiting.

Joanna’s work helps us go further. She teaches us not to judge a person’s worth by their physical or verbal capabilities alone. She urges us to understand that identity is a synergy of mind and body.

Moving Toward a More Inclusive Future

Our responsibility is to create environments where everyone’s light can shine. Identity is shaped by experience, environment, language, and interpretation.

All individuals deserve the same rights to love, care, and fulfillment. Disability should never diminish their humanity. Ultimately, it’s about observing and understanding who we are and how we behave—creating a space where we feel understood and connected. In an inclusive future, every person is recognised, understood, and supported for who they are.

How James and I experience the layers of identity

Advocating for Our Children: Building Partnerships for Change

19.10.2024

I tuned into the SENDCast, a podcast that promotes understanding of current knowledge in the global SEND (Special Educational Needs and Disabilities) landscape and community. This week’s topic focused on the vital theme of Parent and Professional Partnerships.

The conversation highlighted a universal struggle: parents advocating for their children’s needs often feel unheard. This episode featured Denise B. Grant, CEO of Panda’s Tree, a pioneering organisation supporting the Black Down syndrome community. Yet, this challenge transcends individual communities and extends to all neurodiverse individuals, encompassing various cultural, societal, and generational differences.

Denise illustrated her point with an analogy about a surgeon who insists on operating without anaesthetic. This scenario reflects a clash of perspective. Professionals may be resolute in their practices, often disregarding parents’ pleas to hear their concerns. This dynamic resonates with my own experiences; when I advocated for practices I had seen work across organisations, nothing changed. The team was not joined up, which could be due to issues like experience, knowledge, and respect for the parent voice.

When James was six years old, our therapeutic support was abruptly terminated, largely due to my personality. The team did not appreciate my input, despite the vast amounts of money and time I had invested in this private organisation. Suddenly, James was unable to go to school, (for the two hours a day I begged for, and permitted only with private and paid support). Home support ended at the same time. I found myself back at square one, navigating the challenges of caregiving alone. Rest was impossible. Subsequently, James developed Tourette Syndrome, and the days and nights became indistinguishable. The beginning of another chapter another uphill struggle. I began taking antidepressants, which helped, but the isolation remained a constant shadow in our lives. I also gained 10 kilos as a side effect.

In respect of Person and Professional partnerships, my experience with different medications and their effects on my mind and body has been long and complicated. I have tried almost all classes of antidepressants, suffering from brain fog and impaired thinking and alertness. Unfortunately, I couldn’t find relief from any pill, and I simply could not continue taking a drug that affected my ability to care for him. Fortunately, my doctor supported me. She listened and helped me navigate my medications, allowing me the freedom to express my concerns. Unfortunately, this is not always the case, as I’ve learned from other parents and individuals in various online communities. The impact of medications can be devastating to mental state and varies from person to person, so concerns should not be disregarded.

Thus the necessity for professionals to listen to families and exhibit genuine empathy cannot be overstated. This reminds me of the German term “Verstehen,” derived from Max Weber’s philosophy, which means stepping into another person’s shoes and seeing the world from their perspective. This compassionate approach is crucial for fostering understanding and collaboration.

This desolation is mentioned by Denise, who mentions alarming statistics surrounding mental health in SEN families, including rising suicide rates.

This is why I advocate for using social media to create supportive spaces where we can share our voices and experiences. In numerous online community groups, I joined parents and individuals sharing feelings of joy, sorrow and hope. There were frank voices seeking connection and understanding. I appreciated the anonymity; some experiences were too raw to share with friends. These connections became a lifeline—simple affirmations of “I understand” or “me too” provided a sense of solidarity.

The SENDCast also sheds light on the pressures professionals face, often constrained by institutional limitations related to time and legality. As a result, they may resort to shortcuts in primary treatments for neurodiverse children, losing sight of the bigger picture and, sadly, the child at the centre of it all. One shortcut that I believe happens too frequently is medicating as a first-line response to behavioural differences. Medication should not be the primary treatment option; professionals must consider holistic support and work together instill values such as customised healthcare, inclusive education, community engagement, and sustainable support.

Disparities in training and teaching quality raise significant concerns, as unmet needs can persist into adulthood and sometimes lead to tragic outcomes. Cultural stigma and systemic inequalities further exacerbate these challenges, particularly for BAME and underprivileged groups.

Drawing from a lecture by Dr. Pritvi Patel at the University of Birmingham, I recognise the importance of the relationship between cultural backgrounds and support systems. This relationship is crucial in shaping effective advocacy. This is why I advocate for mirroring values of compassion and collaboration across cultures within the neurodiverse community.

The pillars of inclusion stress the importance of building knowledge together for a more empathetic society—one where no child is left behind. In a world grappling with a health crisis and increasing dissatisfaction, this commitment is more vital than ever.

Together, we can create resilient futures for all individuals and families, ensuring access to the resources needed to thrive. Every child matters. True inclusion demands a collective effort to listen, understand, and act on the diverse needs of our communities. We can promote pathways to support and resilience, striving for a healthier, more inclusive future.

Peace and Love,
Jamie

#diaryofasenmama #hopehaven #advocatesapparel #parentprofessionalpartnerships #pledgepactpositivity #advocateaggregateaffirmamplify

Summary of Different Classes of Antidepressant Medicine:

Antidepressants generally fall into several classes, including selective serotonin reuptake inhibitors (SSRIs), which increase serotonin levels in the brain to improve mood, and tricyclic antidepressants (TCAs), which affect various neurotransmitters but often have more side effects. Other classes include serotonin-norepinephrine reuptake inhibitors (SNRIs), which target both serotonin and norepinephrine, and atypical antidepressants, which can work in unique ways and are often used when other treatments are ineffective.

The Happiness Index starkly contrasts the top and bottom-performing countries, particularly concerning students, schools, parents, and communities. Countries that excel often have robust support systems, engaged teachers, and involved parents, fostering nurturing environments.

How happy do you feel?

Alexithymia – emotional blindness?

Not being able to see, perceive, judge, or be aware of something is often caused by genetics or environmental factors, rather than intentional choices. After all, who would choose to be blind?

Understanding Alexithymia: Emotional Blindness Explained

Alexithymia, derived from Greek with “alexis” meaning “no” and “thymos” meaning “emotion” or “mood,” translates to “no emotions” or “lack of words for emotions.” It describes a difficulty in identifying, understanding, and articulating one’s own emotions. Picture trying to describe a colour you’ve never seen—this is similar to the challenge faced by those with alexithymia when dealing with their feelings.

It is not listed as a mental health disorder, and could be viewed as a personality trait. It involves difficulty in recognising and expressing one’s emotional states, which can complicate communication and emotional connection with others. It’s important to note that alexithymia is not about willfully avoiding emotions but often results from a combination of genetic factors and early life experiences.

The Oxford Dictionary defines also blindness as “a lack of perception or judgement.” This metaphorical use of blindness also applies to alexithymia, which may arise from various influences or past experiences. It’s not a matter of deliberate ignorance but rather a complex interplay of personal and environmental factors.

If you know someone with alexithymia, it’s valuable to try to put yourself in their shoes and understand their perspective. Imagine how they perceive and process emotions, and approach them with empathy and compassion. Just as we would support someone with a vision impairment, offering understanding and tools to navigate their emotional landscape is crucial.

Coexistence with Other Neurological Differences

Alexithymia often coexists with other neurological and psychological differences, including:

Autism Spectrum Disorder (ASD): Many individuals with ASD exhibit traits of alexithymia. Both conditions can involve difficulties with emotional expression and social interaction. While alexithymia is not exclusive to ASD, individuals with ASD may experience heightened challenges in identifying and communicating their emotions.
Attention-Deficit/Hyperactivity Disorder (ADHD): People with ADHD might also show signs of alexithymia. The impulsivity and inattention associated with ADHD can impact emotional awareness and expression, leading to difficulties in understanding and managing emotions.
Anxiety and Depression: These mental health conditions often overlap with alexithymia. Individuals with anxiety or depression might struggle with recognising and articulating their emotional states, similar to those with alexithymia.

Overlapping Characteristics

Emotional Regulation: Both alexithymia and other neurological differences like ASD and ADHD can involve challenges in regulating and expressing emotions. Individuals may find it difficult to articulate feelings or might experience heightened emotional responses.

Social Interaction: Difficulties in understanding and expressing emotions can affect social interactions. This overlap is common in both alexithymia and conditions like ASD, where social communication and emotional cues can be challenging.

Sensory Processing: Some individuals with alexithymia might also have sensory processing differences. These sensory experiences can influence how emotions are perceived and expressed, linking with conditions like ASD or ADHD.

Recognising the uniqueness of each individual’s emotional processing, including those who are neurodiverse, is kind. Compassion can go a long way in fostering better communication and connection. By embracing these qualities, meaningful support can be offered to those facing the challenges of alexithymia.

Role models

Young role models with neurological differences, including those related to alexithymia, demonstrate that these traits do not preclude success or influence. Their visibility in popular culture and sports helps to challenge stereotypes and foster understanding. By recognising and celebrating these individuals, we can promote a more inclusive perspective on neurodiversity and emotional processing.

Billie Eilish is a prominent young role model who has openly discussed her experiences with neurodiversity, contributing significantly to discussions around mental health and self-acceptance. In interviews, Billie Eilish has described how Tourette Syndrome affects her, saying,

“It’s just a part of me, and it’s a part of a lot of people, and it’s nothing to be ashamed of.”

Her influence contributes to a more inclusive and empathetic society by breaking down barriers and encouraging acceptance of individual differences.

Why do I avert my eyes?

“Do I avert my eyes because I have difficulty in reading the other’s mind or because I see too vividly?“

Can you imagine being asked to shield your eyes because it makes someone else uncomfortable? It is hard to believe, but this is a true story. A young woman with visual impairment was asked to wear dark glasses. Her uncovered eyes looked different and made the viewers uncomfortable.

Her lived experience included repeatedly being asked to hide her disability. This was done to protect the comfort of others. It came at the expense of her own comfort. How sad. Sadder that it amplifies a larger debate about masking and social skills training.

And it raises questions about how some children are taught to navigate the world. A world with a list of everything they cannot do. Long lists of fabricated scenarios, tests, stepped instructions, sometimes completely separate from the real world and meaning. The world that values ideals and conformity over identity and contentment.

Why do I avert my eyes? I don’t anymore. I vaguely recall it being mentioned as a child. Perhaps I was shy. I am shy (introverted) and extroverted in fact, at different times. My memory is shocking, but I know I was never forced to look into anyone’s eyes.

The way I see it is if the brain can’t process sensory input efficiently, it goes into stress mode. This is why people with autism are known to look away, or not make eye contact. Could it be ‘Seeing too vividly’? This idea is part of a set of Perception-First based concepts. These are Sensory Processing concepts, which I support. Thus the brain primary response is physiological arising from senses we do not consciously control. These include breathing, digesting, or even sneezing.

Perception-First and Sensory Processing

Perception-First Processing prioritises the signals from the environment. It’s a knee jerk reaction. This may be due to the higher number of synapses in their neurology causing noise and overwhelm, or regulation. E.g I get very hot and cold quickly so I usually wear layers. When I can’t control it I get very uncomfortable and then other things start to bother me more. I am overly aware of everything. Depending on my health and energy levels, when this happens I literally cannot focus on anything else. My skin becomes itchy, my hands clammy, the noise is too loud, or the sun is too bright. I want to shut down and put my hands over my ears and eyes. I am having trouble regulating.

This is an example of an intense reaction. I am neurodivergent, I am also a functioning adult and parent to a child with special educational needs. So I have had to learn and keep learning ways to regulate these basic physiological responses. I have to find and remember the methods to control their intensity. This affects me, my child, and our surroundings.

Intense World Theory

It also links nicely to the Intense World Theory. If we perceive the world as too intense, we will shut down. We will put our minds and bodies into a safe mode.

It begins with being aware of our basic safety needs. We need to attend to these needs. Self-regulation is essential. Adjusting the environment promotes inner comfort and calm.

Application of Intense World Theory in Real Life

Intense World Theory can be applied in daily life. This is done by understanding that heightened sensory processing is an integral aspect of the autistic experience. Emotional intensity is also a key component.

Importantly these theories help refute the outdated Theory of Mind (ToM) idea supported by many autism researchers. The concept of Theory of Mind (ToM) suggests that people with autism are cognitively deficient. This is because their thought processes differ from others. It is not true. As not all autistic people are savant, not all will have a cognitive deficit. As people, we have the ability to learn, at different speeds and in different ways. Once we address challenges from our physiology, and the environment, we recognise capacity. From this perspective, we can expect that values and meaning can be attributed to feelings and actions. We can also attribute them to interactions just like anyone else, in a natural environment. Time and response can help us access capacity, and adjustments or added explanations as necessary.

So, why were children forced to look into people’s eyes as part of therapy? & How can therapists incorporate Perception First Sensory Processing and Intense World Theory into neurodiversity-affirming practices?

This is for another post 🙂

Key Aspects of Neurodiversity Acceptance

The shift towards neurodiversity acceptance is a crucial step in recognising and valuing cognitive diversity.

Overlapping Characteristics of Neurodiverse Conditions

Neurodiverse conditions often overlap, and individuals may experience multiple learning differences. For example, dyslexia involves reading difficulties or differences. It may co-occur with dysgraphia, which refers to writing difficulties or processing differences. Dyslexia might also co-occur with dyspraxia, which involves motor coordination difficulties. Understanding these overlaps as processing differences and similarities can lead to more comprehensive and effective support strategies.

Research and Evidence-Based Practices

Research indicates that many neurodiverse conditions have a biological basis involving genetics, neurology, and neuroplasticity. Early identification of motor differences and other neurological factors can support positive outcomes. It is important to rely on evidence-based practices and consult credible sources to ensure the effectiveness of interventions and accommodations.

Building Supportive Communities

Creating spaces where neurodiverse individuals can connect and support each other is essential. Online forums and support groups offer valuable opportunities for sharing experiences and strategies. This peer support is crucial for fostering a sense of belonging and mutual understanding.

Building Supportive Practice

Positive Approach and Inclusive Education: Adopting a positive attitude towards neurodiversity can foster a more inclusive educational environment. Simple accommodations in schools and communities can significantly improve the educational experience for neurodiverse individuals. Examples include visual timetables, Makaton sign language, and voice output communication aids.

Collaboration Between Teachers and Therapists: A collaborative model can greatly benefit neurodiverse children. Teachers work closely with therapists to create effective support systems. This model ensures that educational practices are holistic and tailored to individual needs. The Swiss educational model includes Special Educational Needs Coordinators (SENCOs) in classrooms. It exemplifies effective collaboration.

Augmentative and Alternative Communication (AAC): AAC tools are essential for individuals who face challenges with spoken communication. These tools include speech-generating devices and eye-tracking technology. These tools not only aid communication but also support learning and social interaction. Universal integration of AAC can enhance inclusivity and recognition of diverse communication abilities.

I also propose an Integration of Inclusive Information, Communication, and Technology (IICT). Incorporating IICT into curricula encourages collaborative learning. It enhances technological proficiency. This approach highlights diverse learning methods. It uses technology to support all students, including those who are neurodiverse.

Further Reading and Resources

The Mary Warnock report champions the principle of inclusive education but with a nuanced understanding of various needs. It advocated for integrating students with special educational needs into mainstream schools. However, it recognised that full inclusion might not be suitable for every student. (link to Profound and Multiple Learning Disabilities, PMLD.

The document has the official title Special Educational Needs: Report of the Committee of Enquiry into the Education of Handicapped Children and Young People. It was published in 1984. It is a landmark document in the history of British special education. Commissioned by the UK government, it fundamentally reshaped the approach to education for students with special needs.

Historical Impact:

Inclusive Education: The Warnock Report marked a shift towards recognising the rights of all children. These rights include receiving an education that caters to their individual needs. It promoted the idea that all students should have the opportunity to learn. This includes those with difficulties, in a supportive environment.

Holistic Approach: The 40 Years On review advocates for a more holistic approach to education. It considers not just academic needs, but also emotional and social aspects. This reflects a broader understanding of what constitutes effective support for neurodiverse students.

Critique of “Velcro Assistants”: One of the significant contributions of the Warnock Report was its critique of the over-reliance on what it termed “velcro assistants” — teaching assistants who are permanently attached to a single child. The report argued that this practice could lead to a form of segregation and limit the child’s interaction with their peers. It highlighted that the role of a teacher, who is trained and qualified to deliver a broad and inclusive education, should remain central. The report stressed that the responsibilities of supporting students should not be solely passed onto less qualified teaching assistants. Instead, the role of teaching assistants should be to support teachers in implementing inclusive practices, not to replace them.

By shaping the landscape of special education, the Mary Warnock Report remains a cornerstone of British educational policy. Its legacy continues to influence how schools, educators, and policymakers address the needs of students with special educational needs, ensuring that the principles of inclusion and support remain at the forefront of educational practice.

The National Autistic Society
ACE Centre: Specialises in Augmentative and Alternative Communication (AAC) and Assistive Technology (AT).
American Speech-Language-Hearing Association (ASHA)
AAC Institute
By consulting these and other reliable sources, educators, parents, and professionals can ensure they are implementing the most effective and supportive strategies for neurodiverse individuals.
Social media influencers and prominent neurodiverse individuals can also play a vital role in advocating for acceptance and understanding.

Affirming Neurodiversity and Its Significance

Neurodiversity refers to the natural variation in brain functioning that encompasses differences in perception, information processing, learning, and social interaction. This concept includes conditions such as autism, ADHD, dyslexia, dysgraphia, and dyspraxia.

Embracing neurodiversity means recognising these differences as part of human diversity rather than viewing them solely through a lens of deficit or disorder. This blog briefly covers two psychological concepts that relate to affirming positive identities and self image.

Neurodiversity Acceptance: Building a Supportive and Inclusive Community

The movement towards neurodiversity acceptance is a profoundly positive shift in our society. It emphasises the value of diversity in cognitive functioning and the significance of recognising individuals on the autism spectrum and those with other neurodivergent conditions as unique and equal members of society, neurological differences that may manifest as processing challenges and learning differences. Aside from cognitive functions, equally important are the psychological processes that form in an individual being, relating to self-perception, emotional control, and mental health.

By fostering a community where neurodiverse voices can support each other, we create an environment where everyone, regardless of their abilities, can thrive. This movement is underpinned by several key aspects, including simple accommodations in schools and communities, the use of augmentative and alternative communication (AAC), and the promotion of neurodiverse role models and influencers.

Ensuring that labels are used constructively is crucial in promoting a positive self-perception in neurodiverse individuals. Adopting a positive attitude towards neurodiversity can foster inclusive communities, which can significantly improve the lived experience for neurodiverse individuals.

The Looking-Glass Self and the Self-Fulfilling Prophecy

The concept of the “looking-glass self,” introduced by sociologist Charles Horton Cooley in his 1902 work “Human Nature and the Social Order,” explores how individuals develop their self-concept based on their interactions with others. Cooley used the metaphor of a looking-glass, or mirror, to illustrate how people see themselves reflected through the perceptions and responses of those around them.

The concept of the “looking-glass self” by Charles Cooley highlights how the perception of others can impact self-image and self-worth.

The concept of the self-fulfilling prophecy was first introduced by sociologist Robert K. Merton he defined the self-fulfilling prophecy as a prediction or expectation that, by being made, causes itself to become true. This occurs because the belief or expectation influences behaviour in a way that brings about the expected outcome.

Embracing neurodiversity means recognising and valuing the differences in how individuals perceive, process, and interact with the world. By understanding and addressing the unique needs of neurodiverse individuals, we can create more inclusive communities and improve the quality of life for everyone. Through education, positive reinforcement, and evidence-based practices, we can support neurodiverse individuals in reaching their full potential and contributing their unique perspectives to society.

Practical Tips for Promoting Neurodiversity Acceptance

In Everyday Life:

Effective Communication: Use clear, straightforward language and avoid figurative speech that can be confusing for individuals with neurodiverse conditions. For example, instead of saying “think outside the box,” be specific about what you need.
Inclusive Practices: Promote inclusive behaviours by inviting neurodiverse individuals to share their perspectives and experiences. This can include adjusting meetings to accommodate different communication styles or ensuring that social events have options for quieter spaces.
Educate and Advocate: Engage in community education about neurodiversity. Share resources and support groups, and advocate for policies that promote inclusivity in schools and workplaces.
Celebrate Differences: Recognise and celebrate neurodiverse achievements and contributions. This can involve highlighting role models, acknowledging successes in community forums, or creating platforms for neurodiverse individuals to showcase their talents.

Comment: What’s behind the UK’s increase in Autism Diagnoses – Amelia Hill for, The Guardian.

Conflicting conversations around autism. My take-home notes are:

“The sad truth (is) that autistic people too often do not lead happy lives (diagnosed or not). Compared with non-autistic people, they are about 70-80% more likely to have poor mental and physical health, experience educational under-attainment, unemployment and underemployment, victimisation, social isolation, and premature mortality.

“This has led to some asking whether the main objective of autism research should be refocused to understand how to help autistic people lead happier lives.” ?

The evolution of understanding around autism reflects a complex interplay between diagnostic criteria, societal awareness, and the lived experiences of individuals within the autism spectrum. The shift from viewing autism solely as a disorder to recognising it as part of a diverse identity underscores the importance of embracing neurodiversity. However, challenges persist, with disparities in mental and physical health outcomes highlighting the need for a holistic approach, to support the well-being and positive identity of autistic, individuals.

The loop defined by Russel,”A rise in diagnoses loops back to increased awareness, which impacts on how people identify themselves, which leads to a call for more assessment centres, which has led to a greater rise in diagnoses”

As awareness and diagnoses increase, those with less severe symptoms come forward with their own stories of how autism affects them.

“There is a drive for positively self-identifying as autistic” and it should be acknowledged that you can be in good mental health and autistic.

The diagnostic criteria is widened to take these accounts onboard, which loops back again to another increase in diagnoses.” This loop follows a neurodiversity movement in the late 1990s to remove stigma redefining autism as an identity rather than a disease.

Co-occurrence of Learning Disabilities is now understood to be 75% of this population who are often under-represented in media, communities, and workplaces.

#neurodiversityawareness

Click here to read the full article published Monday, March 4th, 2024.

What’s behind the UK’s increase in autism diagnoses?

Disabled, vulnerable, invisible?

Who?

Disability is a broad and diverse concept that encompasses:

Impairments
Activity limitations
Participation restrictions

Impairment:
An impairment refers to a loss, limitation, or abnormality in body structure or function. This can include conditions affecting the skeletal, sensory, neurological, or other systems of the body.

Activity Limitation:
Activity limitation refers to difficulties an individual may experience in performing tasks or actions. It results from the interaction between an individual’s impairment and the demands of a specific activity.

Participation Restriction:
Participation restriction involves limitations or barriers that prevent individuals from fully engaging in societal roles and activities. This aspect of disability acknowledges the impact of environmental and social factors on an individual’s ability to engage in various aspects of life.

Where?

Considering the above,

Where can disabled people go?
Accessibility factors such as ‘noise’ in the environment can limit social participation and visibility. ‘Noise’ can elicit overwhelming reactions to crowds, sounds, and lights, creating unintentional isolation. In addition to physical barriers, these factors may contribute to a decline in wellbeing.

Where are disabled people in society?
Disabled individuals may be found in care homes, day centres, family homes, or special institutions. Social networks and activities may not always be accessible to them, leading to social exclusion and limited visibility in community life.

Why?

Disabled people collectively form the world’s largest minority group, yet they remain almost invisible to the general public. Why is this?

Physical Barriers
Physical barriers in the environment, such as a lack of ramps, elevators, or accessible transport, can limit the mobility and visibility of disabled individuals.

Economic Disparity
Access to some activities may be further restricted due to cost. Disabled individuals often face economic challenges, including higher rates of unemployment and underemployment. Economic disparities can contribute to reduced visibility in public life. Insufficient policies and practices to ensure inclusivity in various sectors, including education, employment, and public spaces, can perpetuate exclusion.

Predetermined Beliefs, Prejudice, or Discrimination
Often stemming from limited awareness and understanding, misconceptions about the experiences and capabilities of disabled people contribute to their invisibility in various social spheres.

What?

What can be done?
Historically, disabled individuals and their advocates have worked to bring attention to the needs and rights of the disabled community. However, advocacy efforts may not always receive widespread attention.

What do we know now?
We can increase awareness through storytelling. Contribute to the neurodiversity movement by boosting media representation and multi-group/community exposure. Media and advertising often lack diverse and accurate representations of disabled individuals. It is vital to highlight this in efforts to tackle visibility in public perception.

How?

How can we effect a positive change to public perception to promote inclusion?

Increase neurodiversity awareness.
Advocate for a positive identity, greater acceptance, and support for sharing diverse experiences.
Share research that has made a significant impact on the lives of disabled individuals worldwide.

Help empower and show how systemic barriers can affect teaching and understanding self-advocacy among disabled individuals.
These barriers constrain their ability to actively participate and be visible in societal discourse.

Do

Read the World Health Organization Global Disability Report.
Learn core communication words and signs for universal understanding. (link)
Create accessible visuals of core vocabulary in public spaces.