Supporting the Mental Health Needs of People with Skeletal Dysplasia

by Rocana Bray Psychotherapist

MBACP, MNCPS (Accred.)

As a mother of a child with achondroplasia and a psychotherapist, I have first-hand experience of how mental health support often falls behind physical healthcare for children and adults with skeletal dysplasia. Medical teams rightly focus on surgeries, monitoring, and interventions, but the emotional impact is often overlooked. Families quickly learn that while embodying qualities such as resilience, courage, and optimism can carry you so far, the challenges of navigating stigma, accessibility barriers, medical trauma, and differences in processing or attention highlight just how vital dedicated mental health provision really is.

Unique Psychological Stressors

Children and adults with skeletal dysplasia may face a range of emotional and psychological stressors:

• Navigating assumptions and stigma: Misconceptions about ability, intelligence, or potential can affect self-esteem, social confidence, and inclusion.

• Chronic pain and fatigue: Ongoing physical discomfort contributes to stress, anxiety, and low mood.

• Medical trauma: Repeated assessments and procedures, though necessary, can be frightening and leave lasting emotional impressions.

• Accessibility barriers: Everyday environments may not be designed with physical differences in mind, creating subtle and obvious reminders of exclusion.

• Social isolation: Physical barriers, societal attitudes, and differences in communication or sensory processing can limit opportunities for connection.

• Identity challenges: Navigating visible difference alongside neurodiverse traits can make self-image and identity development more complex.

These challenges are very real. When my daughter was in primary school, another parent discouraged their child from playing with her, saying they “wouldn’t learn anything” from her. That moment reflected an assumption about difference that can shape children’s experiences from an early age.

Medical appointments, while essential, can also be stressful. My daughter recalls the anxiety of routine assessments. Experiences that may feel routine to medical professionals but can be overwhelming for a child, particularly one who is neurodiverse and may process sensory input differently.

Neurodiversity and Skeletal Dysplasia

Research shows that children with physical conditions, including skeletal dysplasias, are more likely to experience mental health challenges, particularly anxiety and depression. For example, a study published in the American Journal of Medical Genetics (2015) found that children with skeletal dysplasias, often face higher levels of psychosocial distress compared to their peers. The emotional impact of living with a visible physical difference can lead to social withdrawal, feelings of inadequacy, and reduced quality of life.

When neurodiversity is added to the mix; conditions like ADHD, autism, or other cognitive processing differences, the complexity of these challenges can deepen. Research published in Developmental Medicine and Child Neurology(2020) found that children with both physical disabilities and neurodiverse traits experience unique social difficulties, with heightened vulnerability to bullying, peer rejection, and feelings of isolation. These dual experiences often intersect in ways that are not fully understood by healthcare providers, leading to gaps in care.

Mental Health Provision: Where We Are

While mental health provision for individuals with skeletal dysplasia is often limited, there are positive strides being made. Some healthcare settings have integrated mental health professionals into their multidisciplinary teams, which is crucial for addressing the emotional needs of children with chronic conditions. For instance, many hospitals now have child life specialists or psychologists who support children before and after surgeries, helping them manage anxiety and build coping skills.

Additionally, there are increasing efforts to include mental health services in support groups for families, where parents and children can share experiences and find solace in knowing they are not alone. Peer support networks, whether in person or online, can be incredibly empowering, reducing feelings of isolation and fostering a sense of community.

However, despite these efforts, the broader mental healthcare system is still catching up. Many mental health professionals have not received specific training in the intersection of disability, neurodiversity, and chronic medical conditions. Standard therapy approaches often overlook these unique needs, leaving families to navigate complex emotional challenges largely on their own. While physical health is rightly prioritized in medical care, mental health is often treated as secondary.

It’s encouraging that in some areas, accessible counselling services are available for families who need support, although waiting times can be long. Free NHS Talking Therapies can help with difficulties like anxiety and depression, whilst charities such as Relate and Off The Record offer low cost or free counselling for families and young people. Youth-focussed services like Childline and No5 can provide safe, confidential spaces for children and teenagers to talk about their worries. These services are not always tailored specifically to skeletal dysplasia, but they can be a lifeline, and offer a starting point for emotional support, while wider systematic change is needed. 

Focus for Change

Meaningful, accessible care requires several key improvements:

• Disability-competent training for therapist, ensuring that mental health professionals are equipped to understand the complex needs of individuals with physical disabilities and neurodiversity.

• Integrated care, where mental health professionals are included in multidisciplinary medical teams, ensuring that emotional support is as embedded in treatment as physical health interventions.

• Peer support networks that reduce isolation and provide shared understanding, creating opportunities for families and individuals to connect and offer mutual support.

• Family-focused approaches, acknowledging the impact on parents, siblings, and extended family members who may also be navigating the emotional complexities of skeletal dysplasia and neurodiversity.

• Trauma-informed therapy that addresses both medical and social experiences, helping individuals process medical trauma and the social challenges of living with visible differences.

• Empowerment-based approaches that build resilience, agency, and self-acceptance, helping individuals and families feel more in control of their experiences and futures.

Moving Forward

For families like mine, challenges often come from the intersection of skeletal dysplasia and neurodiversity. This combination can make social situations, learning environments, and medical care more complex, highlighting the need for tailored mental health support.

Healthcare systems, schools, and policymakers must recognise that mental wellbeing is as important as physical health. Disability-affirming approaches, including peer support, family-focused therapy, and inclusive environments, can transform people’s experiences, allowing them to thrive despite the challenges they face. Small adjustments and increased awareness can lead to a more inclusive world where everyone’s emotional needs are taken seriously and supported in ways that truly matter.

UK Counselling & Support Services

Provider	Who For / What They Do	How to Access / Notes
NHS Talking Therapies (IAPT)	For common mental health issues like anxiety, depression etc. Counselling/talking therapies provided free via the NHS.	Self-referral or via GP. Available in person, phone or online.
Relate	Relationship, family, individual counselling; occasionally free sessions via certain partnerships.	Check if you’re eligible via their website; usually offers 6 free sessions through partner schemes.
The Spark	Free & subsidised counselling / mental health support (Scotland & UK), includes fast access single-session therapy.	Contact directly; depends on location & funding.
Off The Record (OTR) Youth Counselling	Young people (14-25) in certain London boroughs; free counselling and specialist services.	Self-refer if in service area; online/telephone when available.
No5	Free counselling for young people aged 11-25 (Reading) + support for caregivers.	Fill in referral form; counsellors are volunteers or trainee counsellors.
ICAP	Counselling & psychotherapy for people from the Irish community in Britain; free / subsidised.	Check their website for eligibility; often face-to-face, telephone or online.
Childline (NSPCC)	Free counselling / support for children & young people under 19.	Call, online chat, or email. Available 24/7 through NSPCC.
Samaritans / Shout / Mental Health Foundation	Crisis helplines / emotional support; not formal therapy, but very useful for immediate distress.	Samaritans: 116 123; Shout: text support; others via their websites.
We Are Survivors	Free counselling / psychotherapy in Manchester area (and surrounding boroughs) for people who need support following traumatic experiences.	Up to 20 weekly sessions after assessment; free at point of access for those in specified boroughs. We Are Survivors
UK Counselling Network	Low cost counselling (online & in person) starting around ~£28 per session; has a free telephone assessment.	Use their self-referral booking form. UK Counselling Network
Low-Cost Counselling	Service run by counsellors in training; supervised; offers counselling at reduced rates.	Contact them directly; therapists are part-trained and supervised. lowcostcounselling.co.uk
BACP (British Association for Counselling & Psychotherapy)	Not a provider directly, but a directory of accredited therapists; also offers advice on finding free or sliding-scale services.	Use BACP website’s directory to find counsellors near you, filter for those offering low cost / sliding scale. Cancer Research UK+1
Counselling Directory	Large UK-wide directory of verified therapists; includes filters for online/phone/face-to-face, and often information about fee rates.	Search by postcode; check profiles for fees; can find lower-cost counsellors or ones who offer reduced fees. Counselling Directory+2Counselling Directory+2