What is Tourette Syndrome?

Tourette Syndrome (TS) is a hereditary neurological disorder characterised by repeated involuntary movements or sounds called 'tics'. It tends to first appear between the ages of seven and 10 and boys are three times more likely to be diagnosed than girls.

Young people with TS may have:

• Motor control difficulties
• Sometimes suffer from depression and moodiness
• Low self-esteem
• Compulsions or obsessions
• Be unable to carry out an action (apraxia)
• Repeat what others say (echolalia)
• Imitate the actions of others (echopraxia)
• Shout obscenities (coprolalia)
• Repeat obscene gestures (copropraxia)

Children with TS suffer a mild form of condition, often with just transient tics. Some young people have a more chronic tics that can last for years. The condition can improve in adolescence, and does so in may sufferers, Tourettes Action Information/ Acquired Brain Injury Ireland.  

LEARNING SKILLS & DEVELOPMENT

Tourette Syndrome does not affect intelligence or learning ability in any way. Most students with Tourette syndrome test within average limits on standardised IQ (Intelligence Quotient) tests.

The difficulties experienced by students with Tourette syndrome in the classroom are often related to the symptoms of the disorder themselves (such as when tics disrupt other classmates or interfere with handwriting or participation in class discussions).Students affected in this way will benefit from having extra time to complete classwork and assignments, NCSE Primary & Secondary Resources.

Some difficulties are caused by co-existing symptoms (such as OCD and ADHD). Other difficulties are associated with learning and academic learning difficulties, for example, tics such as severe head shaking, neck stretching or eye rolling may cause the student to be unable to look directly at the teacher or read easily; hand tics often interfere with legibility of handwriting and visual spatial deficits may result in the student having difficulty with copying from the board or elsewhere. Tics may also impede activities that have strict timing criteria, which may result in lowered test scores and associated inaccurate estimates of ability.

Learning Strategies

It is useful to:

• Provide oportunities for short breaks from the classroom/study session
• Encourage the student to recognise when they need a break
• Allow extra time to do taks to minimise stress
• Provide a quiet place for the completion of tasks and activities
• Allow extra time for taking tests
• Give short, clearly defined tasks and instructions
• Teach keyboard skills so written work can be typed and encourage the use of ICT
• Break instructions into bite-sized pieces and check for understanding by asking the learner to repeat each part
• Use visual and concrete materials to focus attention and aid understanding
• Position the student away from windows and other distractions to aid focus
• Teach organisational skills and maintain routine

Headway Living with Brain Injury Resources

Supports available

Parents of infants, toddlers and young children with disabilities can access the HSEʼs Early Intervention Teams. These multi-disciplinary teams consist of a range of professionals with expertise in child development including medical professionals, psychologists, social workers, speech and language therapists, occupational therapists and physiotherapists. They provide assessment and intervention services to the 0-5 age group.

If a parent has concerns regarding their childʼs developmental progress, they may seek to have the child referred for an Assessment of Need by the HSE. The assessment may screen for concerns in relation to the childʼs physical, cognitive, emotional, social and adaptive behaviour and identify areas of need. Following the assessment, a HSE Liaison Officer is required to prepare a service statement within a month of the assessment being completed. This service statement will state what services the child will require and an action plan will be developed to deal with how these are to be provided subject to resources, HSE CAHMS Child & Adolescent Services. 

Parents seeking an Assessment of Need can ask their GP, Public Health Nurse or the childʼs Consultant to refer the child or they can make a parental referral by contacting their local HSE clinic, NCSE National Council Special Education- Resources. 

Primary Level Education:

Many children with Tourettes attend mainstream primary and secondary schools with their peers unless they have additional needs requiring a special placement. Whilst having the same level of ability as their peers, children with Tourette can be at risk of underperforming due to seizures, hospitalisation, effects of medication and cognitive issues.

These issues themselves do not attract school-based learning support, unless the child is performing in the lowest range at school. In this instance, The National Educational Psychological Service (NEPS) is responsible for providing assessments within schools. The School can commission a small number of assessments each year through the NEPS but waiting lists are lengthy and private assessments by NEPS approved psychologists will be accepted for this purpose.

If the child meets the assessment criteria, they may be awarded a set number of hours of resource time per week and may also be eligible for a Special Needs Assistant. While most children with Tourettes may not meet the criteria for this support, it is important to discuss any support concerns with the principal in the event that an assessment is warranted, NCSE Primary & Secondary Resources.

Secondary Level Education:

A student who has been receiving special education support or resources while in Primary School is eligible for continuation of support at secondary level, once they continue to have a special educational need.

The same general provisions he/she received in primary school apply at Secondary Level. This typically includes specialist teaching from a Learning Support or Special Education Resource teacher (both now referred to as Special Education teachers).

This support is provided based on need, with the number of hours of support determined by the Individual Education Plan (IEP) drawn up in the last year of primary school, NCSE Primary & Secondary Resources.

The Special Educational Needs Organiser (SENO) is an officer of the National Council for Special Education with responsibility for allocating resources to pupils with special needs and related issues in schools, SENOʼs Special Educational Needs Organiser county contacts.

RACE (Reasonable Accommodation in Certificate Examinations)- specific learning disabilities are recognised as giving rise to certain difficulties for students, including students with Tourettes. Under the RACE scheme, students with permanent or long-term conditions*, which will significantly impair their performance in state exams, may apply to the State Examinations Commission (SEC) for a reasonable accommodation(s) to be made to facilitate them taking the examinations. The Race scheme aims to assist students who are at a disadvantage due to a disability, by facilitating access to the state certificate examinations. Details of the scheme of reasonable accommodations RACE State Examinations Commission website. 

There are levels and resources of support within FET courses, Reasonable Accomodations in FET 2022. 

Third Level Education:

Tourettes Syndrome is one of the Neurological Conditions covered under the Disability Access Route to Education (DARE) system. Research findings from AHEAD released in 2022 show that, of the total disabled student population (18,097) at Third Level 2021/22 represented in the research Neurological/Speech and Language (n=1195), AHEAD- Students with Disabilities engaged with Higher services 2022.

DARE - Disability Access Route to Education - School leavers with Tourettes who are under 23 years old (at 1st January of the application year) can apply for a college place through DARE:

Applicants complete the CAO application by 17.15pm on 1st February. CAO opens for applications on 5th November at 12.00 noon. See CAO DARE Information.

By 1st March, applicants must answer YES to Question 1 ('Do you wish to be considered for DARE?') on Section A of the Supplementary Information Form (the SIF is a part of your CAO application). 

Applicants with a Neurological Condition are required to provide:

Evidence of their disability (Evidence of Disability Form 2016 OR Existing report from a  Neurologist OR other relevant consultant (No age limit).

Educational Impact Statement - must be completed by the applicant and your School Principal, Teacher or Guidance Counsellor and returned to the CAO by 17.15pm on 1st April, DARE Tourettes criteria.

You don’t have to be eligible for DARE (Disability Access Route to Education) to get support in college. All students with a verified disability, regardless of whether they come through DARE or not, can avail of a variety of academic, personal and social supports while studying at third level. Further information on the support available in college can be found at accesscollege.ie. 

Common Educational Supports - a range of common educational supports are in place at Third Level for students with disabilities. These include:

• Priority registration
• Reader service
• Use of audio-tape to record lectures and tutorials
• Assistive technology
• Materials in alternative formats
• Word-processing facilities
• Photocopying Facilities 
• Copies of lecturer's notes and/or overheads 
• Notetaker
• Time extension on out-of-lecture assignments
• Special Library Arrangements
• Counselling and Medical Services
• Study skills courses
• Examination provisions 

These and other supports available are outlined in detail in our 'Third Level Supports' area.

There are many different types of Assitive Technology to support you in your learning, AHEAD Assistive Tech Hive.

In the Workplace

Many organisations now make public claims to be an "equal opportunities employer". This suggests the existence of an equal opportunities policy (EOP), which is a policy statement adopted by the organisation declaring an intent not to discriminate and, further, to promote equality by taking steps to aid disadvantaged groups.  Such employers are in effect promising to avoid discrimination on grounds of sex or marital status, and may also make such a commitment in relation to people with a disability and racial and ethnic minorities, WRC Workplace Relations Commission. 

NDA National Disability Authority Accessbility, communications, procurement guide, NDA Toolkit. 

Workplace Equipment Adaptation Grant (WEAG)

If you are a person with a disability who has been offered employment or are in employment, and require a more accessible workplace or adapted equipment to do your job, you or your employer may be able to get a grant towards the costs of adapting premises or equipment. Details of WEAG grants available and how to apply are available, Workplace Equipment Adaptation Grant (WEAG).

If you are feeling fine and your Tourettes symptoms have not created any limitations for you at work, then you may choose not to disclose your condition. You may want to tell your supervisors and coworkers, especially if you require accommodations to be made at work, AHEAD, Guide to Disclosure, 2023. 

Career Choice

Skills for workplace success fall into two main categories: hard skills and and soft skills. Hard skills are job-specific and they vary, depending upon the industry or field in which you want to work. For example, a graphic artist must have the computer skills that go with that job.

Soft skills are the personal characteristics that go with a variety of jobs - they include social skills, problem solving, communication, time management, and organisation. For example, a person who prefers to work alone might find a research job particularly appealing, Explore Career Skills in more detail.

People with Tourettes may benefit from completing a Personal interest profiler and aptitude testing, which will help them identify potential career paths.

Most people with epilepsy have efffectively stabilised the condition and lead full and active lives. People with epilepsy can also perform the vast majority of jobs. Career choice will require individual assessment and consideration of seizure pattern, frequency and relevant safety issues, Headway Resources/ Acquired Brain Injury Ireland. 

Famous People with Tourettes (Associated symptoms)

Singers Billie Eilish,Lewis Capaldi, Jamie Grace Harper; Actors Dan Akroyd, Seth Rogan,Dash Mihok; Sportsmen David Beckham and Tim Howard.