Rwanga Foundation Brings Autism Services to Rural Iraqi Kurdistan

The Rwanga Foundation has inaugurated the Rwanga Autism Center in Harir, expanding access to specialist autism services in a rural area where such support had previously been unavailable.

Senior government officials attended the opening ceremony, including the Kurdistan Region’s Minister of Labor and Social Affairs, the Governor of Erbil, and the Harir District Administrator, alongside public sector representatives and community leaders. 

During the event, the facility was formally handed over to the Erbil Directorate of Social Care and Development, which will oversee its operation and the delivery of services.

The Rwanga Foundation was established by Idris Nechirvan Barzani, known for his work on clean energy and sustainability policy in the Kurdistan Region. The organization runs programs focused on education, social development and environmental protection.

The Rwanga Autism Center has been designed as a learning and therapeutic facility offering tailored educational programmes, structured developmental support and specialist training. The center will also work with families, providing guidance and resources to help parents and caregivers support children with autism at home and in the wider community.

The opening reflects broader efforts in the Kurdistan Region to expand services for children with developmental conditions beyond major urban centers. For families in Harir and surrounding districts, the center provides access to support that was previously unavailable locally.

“Supporting children with autism requires not only professional care but also strong community awareness and family involvement,” the Rwanga Foundation told That's Health.

“This center is an important step toward ensuring that every child has the opportunity to learn and develop their potential.”

The Rwanga Foundation continues to run initiatives across education, environmental protection, youth empowerment and social inclusion across the Kurdistan Region.

http://rwanga.org

The Fonagy Review asks some right questions – inside a framework that risks real harm

Written by neurobetter and published by That's Health as a matter of public service.

neurobetter's response to the interim report of the Independent Review into Mental Health Conditions, ADHD and Autism, and to Professor Peter Fonagy's commentary in The Times (31 March 2026)

Professor Fonagy wrote "the question we face is not whether we should care more about mental health and neurodiversity. We should. It is whether we are responding in the right way."

We agree with the second sentence. But we are concerned that this review, and the way it is already being reported, is not responding in the right way either.

What the review gets right

There are points in this interim report that neurobetter has been making from the start. Support should not be gatekept behind diagnosis. Early, accessible help matters. Systems that force people to wait years for an assessment before they can access any meaningful support are failing everyone – the people waiting, the clinicians assessing, and the public purse.

Professor Fonagy is right that "when support is tied tightly to diagnostic labels, demand for diagnosis will rise." That is not a revelation. It is a description of a system that successive governments have chosen to maintain. The question is not why people seek diagnosis. It is why diagnosis remains the only key that opens the door.

We also want to be clear: the panel leading this review brings decades of distinguished clinical and academic expertise. Professor Fonagy, Sir Simon Wessely, and Professor Gillian Baird have each made substantial contributions to their fields. Our concern is not with their credentials or their intentions. It is with the framing of the review itself, and how that framing will be received.

What concerns us

The review frames rising diagnoses as a problem to be explained. It uses language like "medicalisation of distress", "self-identify" (in quotation marks), and "incentivised". The Times headline goes further: children are "'incentivised' to get ADHD and autism diagnoses."

This language does real damage. It implies that neurodivergent people, many of whom have spent years fighting to be taken seriously, are somehow gaming a system. 

That the increase in recognition, particularly among girls and women, reflects not decades of under-diagnosis finally being corrected, but a fashionable overcorrection.

The report itself acknowledges that "the best population data suggests relatively stable underlying prevalence" for ADHD and autism. But it then sets this against dramatically rising diagnoses and referrals, and invites the reader to conclude that something has gone wrong. An equally valid reading – and one more consistent with the lived experience of the people we work with – is that something is finally going right. People who were previously missed, masked, or misdiagnosed are now being recognised.

What the evidence actually shows

The seven-fold increase in autism diagnoses among girls between 2010 and 2022 is not evidence of overdiagnosis. It is evidence of how profoundly girls were overlooked before.

A Swedish longitudinal study published in the BMJ in February 2026, tracking 2.7 million children born between 1985 and 2020, found that the male-to-female ratio for autism diagnosis was 3:1 in childhood but narrowed rapidly from age 10 onwards. By age 20, the researchers projected the cumulative ratio would reach parity. The gap does not widen with age. It closes. That is not a pattern consistent with overdiagnosis. It is a pattern consistent with girls being systematically missed, diagnosed later, and forced to mask their way through childhood without support.

The picture for ADHD is strikingly similar. A systematic review published in the Journal of Attention Disorders found that boys are diagnosed at roughly 3:1 compared to girls in childhood – but by adulthood, the ratio narrows to near parity. Girls with ADHD are more likely to present with inattentive symptoms, which are less disruptive in a classroom and therefore less likely to be noticed. They are more likely to be misdiagnosed with anxiety or depression. They are more likely to develop compensatory strategies that mask their difficulties until those strategies collapse – often in adolescence or early adulthood, at precisely the point where the review notes a surge in referrals.

In experimental vignette studies, when teachers and parents were presented with identical symptom profiles differing only in the child's name, they were significantly less likely to recommend ADHD assessment for girls than for boys. This is not demand rising because of TikTok. It is demand rising because half the population was being missed, and some of them have now found the language to describe what they experience.

The human cost of getting this wrong

The stakes of this conversation are not abstract. Up to 35% of autistic people have considered suicide, and up to 25% have attempted it. Autistic people are up to seven times more likely to attempt suicide than non-autistic people. Around eight in ten autistic people will experience a mental health problem during their lifetime, compared to one in four in the general population.

Only 31.4% of autistic people are in employment, according to the most recent ONS data – compared to around half of all disabled people and eight in ten non-disabled people. The Buckland Review of Autism Employment, published in 2024, set out 19 recommendations to address this gap. Progress has been slow.

Masking, the very strategy that causes so many neurodivergent people, particularly women and girls, to be missed by diagnostic services, is itself associated with higher rates of depression, burnout, and suicidality. When we frame rising diagnoses as a problem, we risk reinforcing the conditions that lead to these outcomes. People who are identified and supported earlier do better. People who are missed do not.

The missing perspective

"Nearly one in ten young adults 'self-identify' as autistic," the report notes. The quotation marks around "self-identify" are telling. For many people, self-identification is not a casual label adopted from social media. 

It is the result of years of research, reflection, and recognition – often because the formal diagnostic pathway was inaccessible, unaffordable, or had a waiting list measured in years. There are currently over 562,000 open referrals for ADHD assessment in England alone.

To frame self-identification as a symptom of the problem, rather than a rational response to a broken system, is to misunderstand the people you are trying to help.

We recognise that the review has engaged with lived experience organisations and recruited lived experience partners into its topic groups. That matters, and we welcome it. But engagement is not the same as influence. The framing of this interim report, the language it uses, the questions it centres, the narrative it invites, does not read as though it was shaped by the people it describes. 

Lived experience is not a substitute for clinical expertise, but it is not subordinate to it either. A review of this significance, one that will shape policy for years to come, should reflect both in its conclusions, not only in its consultation process.

The wider context

This review does not exist in a vacuum. It sits alongside broader policy conversations about welfare reform, economic inactivity among young people, and the rising cost of disability benefits. We recognise that these are legitimate areas of public concern, and that government has a responsibility to ensure systems are sustainable and well-targeted.

But the language of "overdiagnosis" and "incentivisation" carries risks in that context. It can too easily become a justification for tightening access rather than improving services – for treating rising demand as the problem rather than the decades of unmet need that generated it.

It has been reported that almost 95,000 people now claim Personal Independence Payments for ADHD, up three and a half times since before the pandemic. We would encourage a different reading: these are people whose needs were always there, who are now, finally, able to name what they experience and access the support they are entitled to. The challenge for policymakers is to ensure that support is well-designed, not to question whether it should exist.

What we would rather see

Professor Fonagy calls for "a system that is more proportionate, more responsive and less dependent on diagnosis alone." We agree, but with an important qualification: the answer to a system that gates support behind diagnosis is not to question the validity of diagnosis. It is to build support that does not require one.

neurobetter exists because we believe people should not have to be in crisis to deserve support. We believe that neurodivergent people's distress is real, that it is shaped by systems and environments as much as by neurology, and that earlier, affirming support can prevent the escalation this review describes.

We would welcome a final report that:

centres neurodivergent voices and lived experience in its evidence base and recommendations

distinguishes clearly between the increase in recognition (which is welcome) and any genuine concerns about diagnostic quality (which require better training and resourcing, not suspicion)

resists the framing of rising diagnoses as inherently problematic, and instead examines the decades of under-recognition that preceded them

addresses the structural reasons support is tied to diagnosis, rather than implying that the people seeking diagnosis are the problem

considers how its findings and language will be received by policymakers, the media, and – most importantly – the neurodivergent people whose lives will be affected by the policy decisions that follow

A final thought

Professor Fonagy writes that "we have encouraged people to recognise distress and seek help. We have been less clear about how to stay well."

We would put it differently. We have encouraged people to recognise distress. We have then made them wait years for help. We have built systems that require a clinical label before they will listen. And now we are asking whether too many people are seeking that label.

The answer is not fewer diagnoses. It is better systems.

neurobetter is a UK registered charity (1210347) working to improve the mental health and wellbeing of neurodivergent people through understanding, connection, and earlier support. We are not a crisis service and do not provide diagnosis or therapy. Learn more at neurobetter.org.

That's Health would like to thank neurobetter for alloiwng us to publish their statement.

Understanding the Overlap: Asperger’s Syndrome and Narcissistic Tendencies

In discussions about neurodiversity and mental health, certain traits can appear to overlap across different diagnoses, leading to misunderstanding and mislabelling. 

One such area of confusion lies between Asperger’s Syndrome (a term still commonly used despite now falling under the Autism Spectrum Disorder umbrella) and narcissistic tendencies. 

While these two conditions are fundamentally different, certain behaviours may superficially resemble one another—particularly to the untrained eye.

In this post, we’ll explore the distinctions and possible areas of overlap, what this means for individuals who are misunderstood, and why accurate diagnosis and empathetic understanding matter more than ever.

What is Asperger’s Syndrome?

Asperger’s Syndrome was historically used to describe individuals on the autism spectrum who typically have average or above-average intelligence but struggle with social interaction, non-verbal communication, and restricted or repetitive behaviours and interests. Today, it is generally diagnosed as part of Autism Spectrum Disorder (ASD), but the term still holds cultural and personal significance for many.

Key traits include:

Difficulty with social cues or empathy as traditionally defined

Highly focused interests or routines

Sensory sensitivities

Direct or formal communication style

What is Narcissistic Personality Disorder?

Narcissistic Personality Disorder (NPD) is a mental health condition characterised by:

A grandiose sense of self-importance

A need for excessive admiration

A lack of empathy

Manipulative or exploitative behaviour

Sensitivity to criticism, often resulting in defensive reactions

NPD is a personality disorder rooted in complex emotional and relational patterns, often linked to deep-seated insecurity masked by an outward display of confidence or superiority.

Why This Distinction Matters

Misdiagnosing someone on the autism spectrum as narcissistic can lead to significant harm. A person with Asperger’s may be labelled as arrogant or cold, when in reality, they struggle with the implicit rules of social interaction. This can lead to unfair treatment, social exclusion, and inappropriate therapeutic interventions.

On the other hand, failing to recognise narcissistic tendencies for what they are may result in overlooking harmful relational patterns in personal or workplace dynamics.

Understanding the root motivations and neurological foundations of these behaviours is essential. Autistic traits are not motivated by malice or ego but by genuine neurological differences. Narcissistic traits, particularly in clinical NPD, often involve a pattern of manipulation or emotional harm to others.

The Importance of Professional Evaluation

Only a qualified mental health professional can make an accurate diagnosis. A thorough evaluation will take into account developmental history, emotional regulation patterns, interpersonal behaviours, and underlying motivations.

If you or someone you know displays traits that seem difficult to categorise, seeking help from a specialist in neurodevelopmental and personality disorders is a crucial step toward clarity and support.

Conclusion: Compassion Over Labels

In both autism and narcissism, stigma remains a major barrier to understanding. By taking the time to learn about these conditions—how they differ, where misunderstandings may arise, and why empathy is essential—we help build a more inclusive and supportive society.

Whether someone is navigating life with Asperger’s or struggling with narcissistic traits, the goal is not judgement, but support and understanding. Labels should guide support, not define worth.

Resources (UK Specific):

National Autistic Society https://www.autism.org.uk/

Mind UK – Personality Disorders https://www.mind.org.uk/information-support/types-of-mental-health-problems/personality-disorders/

Autistica https://www.autistica.org.uk/

Psychology Tools – NPD Information https://www.psychologytools.com/

Supporting Life with High-Functioning Asperger’s: Treatments and Guidance for Loved Ones

High-functioning Asperger’s—often referred to as part of the autism spectrum (ASD)—can present unique challenges in everyday life, not just for the individuals living with it but also for their spouses, partners, and families. 

Although it’s no longer diagnosed as a separate condition under the DSM-5 (now integrated under the umbrella of ASD), many people still identify with the term “Asperger’s,” especially when referring to high-functioning profiles.

While people with high-functioning Asperger’s often possess average or above-average intelligence, they may struggle with social interactions, emotional regulation, sensory sensitivities, and rigid routines. 

With the right support and strategies, however, life can become far more manageable—and even thrive.

This post explores helpful treatments for individuals and offers guidance for those who love and support them.

Understanding High-Functioning Asperger’s

People with high-functioning Asperger’s might face challenges such as:

Difficulty reading social cues or responding to unspoken social norms

Sensory sensitivities (to noise, touch, light, smells, etc.)

Struggles with executive functioning—like planning, organising, or transitioning between tasks

Intense focus on specific interests

Difficulty expressing or interpreting emotions

Despite these challenges, many develop successful careers, relationships, and rich inner lives. The key often lies in identifying personalised strategies that support emotional well-being and communication.

Effective Treatments and Supports for Individuals

1. Cognitive Behavioural Therapy (CBT)

CBT helps address anxiety, negative thinking patterns, and emotional regulation. Therapists who specialise in neurodiverse clients can tailor CBT to accommodate the specific thinking styles of people with Asperger’s.

2. Occupational Therapy

This form of therapy is particularly useful for sensory integration issues and can help with skills such as self-care, workplace functioning, and managing daily routines.

3. Social Skills Training

Group or individual social coaching can be invaluable in improving conversational skills, body language interpretation, and understanding social dynamics. Many adults find this improves confidence in both personal and professional settings.

4. Speech and Language Therapy

Though more commonly associated with children, adults can also benefit—particularly if communication tends to be very literal or overly formal.

5. Medication (When Needed)

While there’s no medication specifically for Asperger’s, co-occurring conditions like anxiety, depression, or ADHD may be treated pharmacologically under a GP or psychiatrist's supervision.

6. Peer Support and Community Groups

Autistic-led groups and online communities provide a safe space for sharing experiences and strategies. Many individuals find comfort in talking with others who “get it.”

7. Routine and Structure

Creating predictable routines can help reduce anxiety. Planners, apps, and visual schedules can be excellent tools.

Support for Spouses and Family Members

Supporting a loved one with high-functioning Asperger’s can be rewarding, but also emotionally taxing without the right resources. Here are some strategies that can help:

1. Education Is Empowerment

Learning about Asperger’s can reduce misunderstandings. It can help you reframe behaviours that seem distant, abrupt, or overly rigid as neurodivergent traits, not personal slights.

2. Couples Counselling (with Neurodiverse Awareness)

Counselling with a therapist familiar with neurodiverse relationships can foster better communication, especially when emotional processing and expression differ greatly.

3. Clear, Direct Communication

Metaphors, sarcasm, or emotional subtext may not always land. Being explicit and honest—while kind—can avoid frustration and build trust.

4. Respect Their Need for Space

Overstimulation or emotional overload can lead to shutdowns or withdrawal. Giving space during these times, without judgement, can be an act of love.

5. Celebrate Strengths

Focus on what your loved one can do—their creativity, loyalty, deep interests, or logical thinking. Let their strengths flourish.

6. Support for Yourself

Don’t forget your own well-being. Join support groups, read about neurodiverse relationships, and give yourself permission to feel the full range of emotions that can come with being a partner or parent in this situation.

Final Thoughts

Living with high-functioning Asperger’s can be complex, but with the right tools, both individuals and their loved ones can lead deeply fulfilling lives. The journey may involve adjustment and patience, but it’s also one that can be rich with insight, resilience, and connection.

If you’re navigating life with high-functioning Asperger’s—or love someone who is—know that you’re not alone. With understanding, empathy, and support, thriving is entirely possible.

These resources will be of help:-

https://www.nhs.uk/conditions/autism/support

https://www.autism.org.uk/

https://autismsociety.org/

Are Individuals with High-Functioning Asperger's Syndrome Egotistical? An Exploration

The question of whether people with High-Functioning Asperger’s Syndrome (often regarded today as part of Autism Spectrum Disorder, or ASD) are egotistical is both complex and nuanced. 

This perception arises from certain behaviours or traits associated with the condition, but it’s crucial to examine these characteristics with an informed, compassionate lens.

Understanding High-Functioning Asperger’s

People with High-Functioning Asperger's, or high-functioning autism, often have significant strengths, such as strong attention to detail, logical thinking, and deep dedication to their interests.

However, they may also experience challenges with social interaction, communication, and interpreting social cues, which are largely inherent to ASD. These social differences can sometimes lead to misunderstandings that may contribute to perceptions of egotism.

What Might Lead to Misconceptions?

1. Communication Style:

People with High-Functioning Asperger's may communicate in ways that seem direct or even blunt, as they often prioritise accuracy and truthfulness over social niceties. This communication style, while authentic, can sometimes be perceived as dismissive or self-focused. For neurotypical individuals, this directness may seem off-putting or self-centred, even though it's rarely intended to come across that way.

2. Focus on Interests:

A characteristic feature of Asperger's is an intense focus on particular areas of interest. People with the condition may talk at length about subjects they find fascinating, sometimes without noticing whether others are engaged. While this may seem self-absorbed to outsiders, it’s typically not an expression of ego but rather a genuine enthusiasm that may override social awareness. For them, sharing their passion is an attempt at connection, even if it doesn’t always align with conventional social expectations.

3. Challenges with Empathy:

Empathy is often divided into two categories: cognitive empathy (understanding others’ feelings) and affective empathy (feeling others’ emotions). Many individuals with High-Functioning Asperger’s can experience affective empathy strongly, though they may find it challenging to interpret or respond to social cues due to difficulties with cognitive empathy. Consequently, they might appear less responsive to others’ needs, even though they may deeply care. Misreading this as a lack of empathy can lead to the assumption that they are self-focused.

High-Functioning Asperger’s and Self-Perception

Interestingly, those with High-Functioning Asperger’s often do not possess an inflated sense of self. In fact, many experience heightened self-awareness and self-criticism due to their struggles in social settings. They may feel like outsiders or may become frustrated by their own challenges in connecting with others. Rather than egotism, this can manifest as social anxiety or self-doubt, contrary to the stereotype of self-centeredness.

Cultural and Social Perceptions

Part of the issue arises from the way society interprets and values different forms of communication and social interaction. Because our culture often rewards conventional social skills, behaviours that don’t fit into this mould may be misunderstood. People with Asperger’s, who interact in unique and often more analytical ways, may be wrongly labelled as egotistical simply because they don’t conform to typical social expectations.

Strategies for Mutual Understanding

Rather than focusing on labels like “egotistical,” it’s helpful to approach interactions with people who have High-Functioning Asperger’s with curiosity and empathy. Some suggestions include:

Encouraging open communication: Ask questions or clarify intentions rather than making assumptions about someone’s motives or feelings.

Embracing directness: Recognise that blunt or direct communication is a style, not necessarily a reflection of arrogance.

Exploring shared interests: Engaging with their passions can open doors to meaningful connections, as they often enjoy discussing their interests with those who show genuine interest.

Final Thoughts

The notion that people with High-Functioning Asperger’s are egotistical is largely based on misunderstandings of their unique communication style and cognitive processing. Many of the behaviours perceived as self-centred are better understood as different approaches to social interaction, rooted in the neurological traits of ASD. With greater awareness and acceptance, society can move away from stereotypes and towards a more inclusive understanding of neurodiversity.

Navigating Life's Complexity: Living with a High-Functioning Asperger's Spouse

Living with a spouse who has Asperger's syndrome, a form of high-functioning autism, can be a uniquely challenging yet rewarding experience. 

Asperger's syndrome is characterised by difficulties in social interaction, repetitive patterns of behaviour, and intense interests. 

While individuals with Asperger's often have remarkable abilities and talents, their condition can present significant challenges in the context of marriage and family life. In this blog post, we'll explore some of the common challenges faced by couples in such relationships and offer strategies for navigating them with understanding, empathy, and resilience.

Understanding Asperger's Syndrome:

Before delving into the challenges, it's crucial to have a basic understanding of Asperger's syndrome. Individuals with Asperger's typically exhibit difficulties in understanding social cues, expressing emotions, and engaging in reciprocal communication. They may have narrow interests and adhere rigidly to routines and rituals. Despite these challenges, many individuals with Asperger's possess exceptional intellectual abilities and excel in specific areas of interest.

Challenges Faced by Couples:

Communication Struggles: Effective communication is the cornerstone of any healthy relationship. However, for couples where one spouse has Asperger's, communication can be particularly challenging. Individuals with Asperger's may struggle to interpret nonverbal cues, express emotions, or engage in small talk, leading to misunderstandings and frustrations.

Emotional Intimacy: Building emotional intimacy requires vulnerability, empathy, and mutual understanding. For individuals with Asperger's, expressing emotions and empathising with their partner's feelings can be difficult. This can leave their neurotypical spouse feeling lonely or emotionally disconnected, even if there is love and commitment in the relationship.

Sensory Sensitivities: Many individuals with Asperger's experience heightened sensory sensitivities, such as sensitivity to light, sound, or touch. These sensitivities can affect daily activities and may lead to conflicts or misunderstandings within the relationship, especially if the neurotypical spouse doesn't fully grasp the extent of these sensitivities.

Routines and Rigidity: Individuals with Asperger's often thrive on routines and may become distressed when their routines are disrupted. This rigidity can impact various aspects of family life, from mealtime routines to weekend activities, and may require compromise and flexibility from both partners.

Navigating the Challenges:

While living with a spouse who has Asperger's syndrome presents its share of challenges, it's essential to approach these challenges with empathy, patience, and open communication. Here are some strategies for navigating the complexities of such relationships:

Education and Understanding: Educate yourself about Asperger's syndrome and its impact on behaviour, communication, and relationships. Understanding your spouse's neurodiversity can foster empathy and help you navigate challenges more effectively.

Clear and Direct Communication: Be explicit and direct in your communication with your spouse, avoiding ambiguity or implied meanings. Clearly express your needs, feelings, and expectations, and encourage your spouse to do the same.

Seek Support: Reach out to support groups, online forums, or couples therapy sessions specifically tailored to individuals in neurodiverse relationships. Connecting with others who share similar experiences can provide validation, guidance, and practical advice.

Establish Routines and Boundaries: While flexibility is crucial, establishing predictable routines and boundaries can provide structure and stability in your relationship. Work together to find a balance between honoring your spouse's need for routine and flexibility in adapting to change.

Celebrate Differences: Embrace the unique strengths and talents that each partner brings to the relationship. Celebrate your spouse's passions and interests, and find opportunities to share in them together while also nurturing your own interests and hobbies.

Living with a spouse who has Asperger's syndrome presents its share of challenges, but with understanding, empathy, and effective communication, couples can navigate these challenges and cultivate a loving, fulfilling relationship. 

By recognising and honouring each other's differences, fostering open dialogue, and seeking support when needed, couples can build a strong foundation for a lifelong partnership filled with love, respect, and mutual understanding.

(Image courtesy of John Hain from Pixabay)

People with misunderstood autism profile facing mental health crisis say national charity

82% of PDA adults felt they needed professional support for their mental health last year, but a quarter said there was no-one to provide it.

In a report released today the PDA Society revealed that over 80% of autistic adults with a PDA profile have considered taking their own lives.

The report's findings come from a survey conducted by the PDA Society in May 2023, and suggest that 80% of adults and 40% of children with a PDA profile of autism have considered taking their own lives. The data also shows that more than 80% of PDA people have experienced severe anxiety in the past year.

87% of children & 82% of PDA adults have experienced severe anxiety in the last year.

84% of PDA adults and 40% of PDA children have considered taking their own lives.

PDA (which stands for Pathological Demand Avoidance) is a profile on the autism spectrum. This means that people with PDA are autistic, and may have differences in social interaction, communication and sensory processing, and some restrictive or repetitive behaviours. 

In addition, PDA people will have a fear response to demands, and use social strategies to avoid them. It isn’t known how many PDA people there are in the UK. The only study of prevalence, which was small and not definitive suggested that as many as 1 in 5 autistic people could have a PDA profile. If this was the case it would equate to 140,000 people across the UK.

Conventional strategies suggested to support autistic people, such as consistent routine and structure, firm boundaries, or rewards and consequences, are not only ineffective with PDA people, but can make things worse. PDA Society’s report suggests that this is key to understanding the mental health crisis that PDA people are experiencing. They believe it is essential professionals understand what works for people with less common presentations of autism, such as PDA.

PDA Society’s CEO, Elizabeth Archer says “It’s devastating that so many PDA people are considering taking their own lives. We found that 82% of PDA adults felt they needed professional support for their mental health last year, but a quarter couldn’t name a single person or service that had offered them that help. And where people had received support, they overwhelmingly talked about getting that from family and friends not professionals.

PDA people struggling with their mental health deserve access to help from professionals who recognise the challenges they face and ensure that help is accessible to them. Our report outlines four changes in approach that could transform PDA people’s experiences, both of stressors that contribute to this crisis and of seeking help. This situation is not inevitable, with fair access to help and support PDA people can live happy lives”

Evidence from the report suggests that, even with a diagnosis in place, there are very few health professionals who have access to adequate training, resources or specialists to advise on support approaches that are safe for PDA people.

One parent of a PDA child said, “My son had a mental health crisis for over two years - self harming, suicidal ideations and an attempt. No support was given because professionals didn’t know how to engage [with] him and their language and approaches only made things harder. ”

PDA Society are calling for wider recognition of less common presentations of autism, including PDA, and for all healthcare providers to follow a needs-based support approach with autistic adults and children.

PDA Society is the only specialist PDA charity in the UK. You can read the report in full on their website pdasociety.org.uk

CASE STUDY

Agnes (pseudonymised)

Agnes’ son had two very difficult years with his mental health and behaviour. Professionals wouldn’t use PDA approaches with him. Instead he was medicated and restrained. Agnes has now taken him out of school.

“I had to take him out from the school for his safety. He is 10 years old. He acted completely different at home and in the community from at school. At home I use PDA approaches and he’s fine, not an angel but he doesn’t hurt anybody. He's so violent at school. At eight years old, he started really harming others, pulling hair and biting on a daily basis. And in the meetings they would ask me how I dealt with that. And I told them I managed behaviour differently at home and it worked but they just didn’t listen.

"He started to be not himself. The severity of harming others and himself was just unbelievable. And because he had severe speech and language delay a lot of time, people don't understand what he's saying, and of course he gets frustrated and extra anxiety on top of his PDA. Every morning for 6 months he was screaming with distress about going into school. I went to CAMHS. They tried medications on him.

"Meanwhile I felt my son was unsafe at school, he had bruises, really heavy bruises on his back, it turned out that school had started restraining him. I can’t understand how this was an easier choice for them to make than trying the flexible approaches that worked at home. I took him out of school more than six months now, he's at home with me. In that time, I’ve not had one incident with him.

"He’s been released from CAHMS – I said to them so you’ve had my little boy on your list for three years, you’ve tried to medicate him and it turns out all I had to do was take him out of a school who won’t treat him the way he needs to be treated. It’s ridiculous – all his distress, the self-harm – that wasn’t about his PDA. It was about his teachers not being prepared to try a different approach with him.”

What is PDA?

PDA is most commonly described as a profile on the autism spectrum. This means people with PDA are autistic, and may have differences in social interaction, communication and sensory processing, and some restrictive or repetitive behaviours. Also, PDA people will have a fear response to demands and use social strategies to avoid them. The cluster of traits common to autistic people with PDA is known as a PDA profile.

Demand avoidance isn't uncommon in autistic people; however, most demand avoidant autistic people do not fit a PDA profile. Whilst their behaviours might seem similar on the surface, the approaches needed for PDA autistic people and other demand avoidant autistic people can be different. 

Conventional strategies, like consistent routine and structure, firm boundaries, or rewards and consequences, are not only ineffective with PDA, but can actually worsen things.

Research on PDA is in its infancy, and there is ongoing debate about how to categorise or label the experiences of PDA people. The focus of the PDA Society is less on the terminology used and more on ensuring individual needs are understood.

It's unknown how many PDA people there are in the UK. There has only been one study of prevalence, which was small and therefore not definitive. However, this study suggests 1 in 5 autistic people could have a PDA profile, which could mean there are as many as 140,000 children and adults across the UK who aren't receiving the support they need to thrive.

The PDA society believes all autistic people should have access to professionals who are focused on meeting their individual needs whether they have a formal diagnosis or not, and that for this an understanding of what works for people with less common presentations of autism such as PDA is key.

The PDA Society is the only specialist PDA charity in the UK.

We care about PDA people and believe that happy autonomous lives are possible – everything we do is about trying to make life better for PDA people and the people who care about them.

They do this by:

Raising awareness of PDA and providing high quality, trustworthy information.

Providing training to parents and professionals to help them understand how to support PDA people, and to build safe, supportive connections.

Offering tailored support to PDA people and their families through our enquiry line service. This is entirely staffed by trained people who ‘get it’, either because they are PDA themselves, or are a parent carer of a PDA person.

Supporting the PDA community to build connections and act collectively to influence positive change for PDA people.

Underpinning all of this is their commitment to research and using evidence to influence better understanding, better support and better outcomes for autistic-PDA people.