Cystic fibrosis and neurodiversity
Neurodiversity may shape the way people experience living or caring for someone with CF.
What is neurodiversity?
Neurodiversity is a word used to explain that some people process things and see the world differently. Being neurodivergent is not a diagnosis or a medical condition itself, but does cover some specific conditions like autism and attention deficit hyperactivity disorder (ADHD). People who are not neurodivergent can be called neurotypical.
Neurodiversity and CF
For people affected by CF, neurodiversity means processing and experiencing CF differently. That could be someone with CF, or a parent or carer of someone with CF.
People who are neurodiverse are all different and have their own strengths and challenges.
I have ADHD so I need to be out and about and on the move, I don’t like sitting down for too long. This has benefitted my CF because I love being out and about and moving my body.
– Morgan, who is aiming to become the first professional footballer with CF
As most people in the UK are neurotypical, health care, support and treatments aren’t always set up with neurodiversity in mind. This means there can be a lot of barriers for people with CF who are neurodivergent to stay as well as possible.
Vicky, Morgan's mum, also has another child with CF and additional needs, Aiden. In this video, she tells us about her family's early experiences of CF and neurodivergence and the challenges they faced, what they wish they'd known when the boys were little, and how their CF team supports them now.
For Oscar, there are sensory challenges – swallowing capsules feels distressing, and sometimes the feeling of them in his mouth makes him gag. Some liquid medicines taste bad, and he outright refuses to take them.
Oscar's mum, Amanda (names have been changed)
Oscar also struggles with the taste and texture of a lot of food and nutritional supplements, which has made adequate nutritional intake extremely difficult for him. The sensation of clearing mucus from his chest also causes him to panic and makes him anxious, so he is resistant to make any conscious effort to clear the mucus from his airways.
The demands of eating, going to the toilet, doing physio, and taking medicines, and doing so in a timely manner is very dysregulating for Oscar. I watch him struggle to force himself through these treatments. Sometimes it's too overwhelming for him, and he cries and runs to his safe space to curl up in a foetal position.
Read Oscar's story and his mum's recommendations for supporting neurodivergent children with CF
Some studies suggest that across the world there are higher rates of ADHD in people with CF than in the general population. Other studies have highlighted the need for extra support for autistic adults and children with CF.
Children with CF-ASD (Autism Spectrum Disorder) face extraordinary challenges beyond the experience of neurotypical children with CF. Increased awareness of this complex dual diagnosis will help providers be sensitive to the unique needs of these patients, help build consistent and trustworthy relationships with their families and deliver effective clinical care despite limitations.
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Get support with neurodiversity and CF
One of the ways we can support people affected by CF and neurodivergence to stay well with CF is through our grants programme. This has included providing a grant for a trampoline for Ellis (name has been changed), a little boy whose family needed extra support to make sure he could do the physiotherapy needed to keep him well:
He is completely non-verbal and has no communication with us. Getting him into routines is massively difficult and he is resisting treatment at present. He hates physiotherapy and it takes hours daily to get him to do this. Having a trampoline where he can jump and bounce and get some benefit is going to be key to ensuring he can clear some of the mucus that is causing him so many problems.
– Parent of a child with CF
Find out more about all of our support and how we can help you and your family
Our Helpline
Our Helpline is also available to anyone looking for information or support, a listening ear, or just to talk things through. You can call the team on 0300 373 1000 or 020 3795 2184, or email [email protected], or contact us on WhatsApp. We’re open Monday – Friday, 10am – 4pm.
Our online community
Our online community is a safe space to chat with others in the CF community who know what you’re going through. In the online community, there is a dedicated space for people affected by CF and neurodivergence to support each other and share experiences.
Other support
The National Autistic Society (NAS) also provides support through their advice and guidance page, their general enquiries Supporter Relations team and their Parent to Parent Emotional Support Helpline.
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How you can get involved
There is some research which tells us about CF and neurodiversity, but there is still a lot more we need to know and understand to provide the best care and support.
We want to look at all the ways we can help, including providing more information on CF and neurodiversity. If you’d like to be involved with this, please contact our information team.
One of the things we often hear from people affected by CF and neurodiversity is that they feel alone in some of the challenges they face. By sharing stories, like Oscar and Morgan’s stories, we hope people will feel less alone and be more likely to find the support they need. If you’d like to share your story with us, you can email [email protected].
We are different but united. Each of us has our own story to tell.
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Neurodivergence and cystic fibrosis: Mum Amanda* shares Oscar’s* story
We sat down with Amanda, 28, whose seven-year-old son, Oscar, is autistic and has CF. Amanda spoke about the importance of greater awareness and how healthcare teams can best support neurodivergence and cystic fibrosis.
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"My big goal is to become the first person with CF to be a professional footballer": Morgan's story
We spoke to Morgan about his goal to become the first person with CF to be a professional footballer and his experiences of school and ADHD.
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"He is my little hero, the bravest child I know": Marta and Igor's story
Marta, mum to twins Igor and Wiktor, tells us about Igor's cystic fibrosis (CF) diagnosis – and how things have changed since then.
You might also be interested in
How we can support you
We offer high-quality information and support for people living with CF and their families.
Our grants
We have a number of welfare grants available to help support people with cystic fibrosis (CF) and their families through challenging times.
Work and education support
If you have CF and are looking for, or want to stay in, work or education, we can support you.