Children and young people affected by dystonia can sometimes struggle with education and may fail to reach their full potential. By understanding the challenges faced by these young people, those involved in their education can help them to make the most of all opportunities in school and beyond.

What is dystonia?

Dystonia causes uncontrollable and sometimes painful muscle spasms due to incorrect signals from the brain. It affects at least 70,000 in the UK. Of these, some 8,000 are children and young people. Dystonia is a neurological movement disorder that results in abnormal postures or movements, with or without tremor. However, in most cases, it does not affect intellect or lifespan.

Dystonia can affect just one part of the body or several different areas most commonly the trunk, arms or legs (especially in young people), neck, face, eyelids and vocal muscles. Where dystonia appears in young people, it often spreads to multiple areas of the body. For instance in one type of early onset dystonia, generalised dystonia, involuntary spasms can occur in a foot or leg and then progress to include other limbs, the trunk and sometimes the whole body.

What are the difficulties for young people with dystonia at school or college?

Living with dystonia is stressful: it can cause significant pain and discomfort and can have a major impact on all aspects of life and living.

  • The muscle spasms, often accompanied by pain, can make sitting or standing for long periods challenging. Concentration and the ability to cope with lessons can be affected.
  • Walking problems can make getting from one classroom to another difficult or impossible, particularly if stairs are involved.
  • There may be difficulty packing bags between lessons or getting ready for sports or other activities.
  • Coping with activities such as washing and dressing may be challenging.
  • Some children may struggle to speak, write or do other tasks quickly so cannot keep up with lessons.
  • Tiredness and exhaustion for all or part of the day means a student may not be able to cope with a full day at school/college. Medication can also reduce energy levels.
  • Other illnesses and infections or stress can worsen symptoms and the student may need to be able to work at home at these times.
  • Poor body image, low self-esteem and depression due to involuntary movements and posture may mean they fall victim to bullying and harassment from others.
  • However, it is essential to remember that dystonia does not affect intelligence. Children and young people with dystonia are just as able academically as their peers. Most just want to be the same as everyone else.

Making the most of education opportunities

In most cases, children with dystonia are able to cope with education in mainstream schools and colleges provided they recieve adequate support, assistance and equipment. If a mainstream school cannot provide all the help a child requires, the local authority may agree to a Statement of Special Educational Needs. Statementing helps to identify any additional help to be put in place, although provision varies between local authorities.  Colleges and universities also have a responsibility to make all reasonable adjustments to ensure that students with disabilities do not suffer any disadvantage.

Whether or not a child is statemented, it is important that everyone involved in his or her care, education and development works together to give support at every stage, and particularly through transition from children’s services to adult services.

How can teachers and SENCOs help?

The following are offered as suggested strategies.  Needs vary from one individual to another and should be discussed with the young person, their parents/carers and any other relevant external agencies. Practical adjustments that may help children with dystonia could include:

  • Ensure that furniture is well spaced so that the student is able to sit comfortably and move position when necessary.
  • Review the location of classes and adapt, where circumstances allow. For example, where is their tutor/form room in relation to their classroom(s)?
  • Allow students to leave lessons early so that they can avoid the crush and rush in corridors.
  • Issue two sets of text books: one for home use and one for use in the classroom. Where possible, texts for school should be securely stored in classrooms in which the lessons take place.
  • Teachers/learning support assistants should show sensitive awareness of difficulties related to packing/unpacking of bags.
  • Appoint a trusted buddy to help with packing and carrying.
  • Consider the use of word processing/laptop to facilitate writing and note taking.
  • Provide notes at the beginning of lessons to avoid the necessity of copying from the board.
  • Allow for rest breaks and opportunities for movement during lessons and examinations if necessary. Provide a suitable place for rest.
  • Establish discreet systems whereby the student can signal their need for a rest break or that they are having difficulty with concentration.
  • Ensure that the student has somewhere to go at break and lunchtimes where they feel secure and comfortable – for example the school library or other supervised area.
  • Plan your scheme of work with opportunities for home-study in mind so that you are prepared if the student has to spend time at home.
  • Plan ahead for school trips or field trips to ensure that the student can be included in as many relevant activities as possible.
  • Find ways to ensure that the student feels comfortable when group or individual school photographs are being taken.
  • Ahead of examinations, discuss the need for additional time during exams, and the option of using a scribe or computer. Examination boards usually require a formal letter from the GP or neurologist, to be submitted via the SENCO.
  • Adhere to the anti-bullying policy. Arrange for staff and fellow pupils/students to be briefed about the nature of the condition and the student’s needs.
  • Maintain regular communication with parents/carers. Understand that having a child with dystonia can put significant pressure on a family, including siblings, and that additional relevant support may need to be sought at times.

The role of SENCOs

SENCOs can play a crucial part in the education and future development of a young person with dystonia by:

  • Supporting early identification and intervention, ensuring appropriate educational assessments are carried out;
  • Assisting with the statementing process if required;
  • Making sure that an individual education plan (IEP) is put in place and is being followed, with regular reviews;  
  • Liaising with other specialists (eg. paediatric occupational therapists) to ensure that suitable equipment is provided and practical access issues are resolved.

When the young person moves on to later stages of their education (sixth form, college or university), the SENCO can help to ensure that Transition Plan review meetings are properly prepared for by all parties, and take full account of the young person’s wishes and aspirations.

The importance of a multidisciplinary team

Because dystonia is a complex condition, it is important to recognise that the most effective outcomes for children affected by it can only be achieved through a multidisciplinary approach to care.  As well as educational support, other agencies involved are likely to include clinicians, physiotherapists, occupational therapists, speech & language therapist, dieticians and psychological therapists.

All these different disciplines need to work together and communicate efficiently with one another. To provide the best possible management, those involved in each discipline should ideally anticipate changes in need as they occur, in order to ensure that help, assistance and equipment is provided in a timely and effective way.

SENCOs, teachers and other education staff have a vital role within this team.  Apart from parents and carers, they are the ones who spend the most time with the young person and are an integral part of their daily routine during term times. They can make a huge difference to the educational and life chances of young people with dystonia, helping them to overcome challenges and achieve their full potential.

The Dystonia Society

The Dystonia Society can help by providing more information and advice to those involved in education.

Helpline 020 7793 3650
General Enquiries 020 7793 3651
Email [email protected]