EHCP for a Child with Tourette's
Tourette's syndrome puts parents in a strange double bind at school. If the tics are visible, they get treated as naughtiness: warnings for calling out, detentions for throwing a pen the hand would not hold, sanctions for "disruption". If the tics are invisible, because your child spends every lesson forcing them down, school sees a model pupil and cannot understand what you are describing at the gate. Both versions leave a child unsupported. This guide explains how to turn what you know into a lawful, well-evidenced EHC needs assessment request.
Suppression: the invisible work that fills the school day
Most children with Tourette's can hold tics back for a while, and school gives them every reason to try: fear of laughter, of sanctions, of standing out. But suppression is not free. It works like holding your breath. The urge builds, attention narrows onto the effort of holding still and quiet, and the lesson happening at the front becomes background noise. A child can sit through an hour of maths, tic-free, and take in almost none of it. Teachers see compliance; the child experiences a day-long fight with their own nervous system.
Then comes home time. The front door closes and the dam breaks: motor and vocal tics in volleys, exhaustion, rage over nothing, tears, sometimes hours of ticcing that leave muscles sore. Parents describe two different children, and in a sense they are watching the same child twice: the cost being incurred at school and the bill being paid at home. This school-fine-home-explosion pattern is a classic presentation of hidden need, and councils and tribunals are used to seeing it evidenced properly. Your job is to write it down, with dates and durations, because school records will never capture it.
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See a free section →Where Tourette's sits in the Code of Practice
The four broad areas of need in the SEND Code of Practice are communication and interaction, cognition and learning, social, emotional and mental health, and sensory and/or physical. Tourette's rarely respects a single box. The anxiety, the social bruising and the emotional aftermath of suppression sit in social, emotional and mental health. Many children also have sensory sensitivities, and the physical reality of tics can touch the sensory and/or physical area. Co-occurring conditions are common with Tourette's, including features of OCD and attention difficulties, and where they are present they belong in the request too. List every area where you see impact, because the areas you name determine whose advice the council gathers.
Why the section 36(8) threshold works in your favour
Section 36(8) of the Children and Families Act 2014 obliges the council to assess where a child has or may have special educational needs and it may be necessary for provision to be made through an EHC plan. Twice the statute says "may". Your child does not need failing grades, a fixed diagnosis or an agreed explanation of how tics, anxiety and attention interact. A neurodevelopmental referral, a tic diary and a widening gap between effort and outcome are enough to make the possibility real, and possibility is the whole test. Councils that ask for certainty before assessing have the law backwards.
Evidence that carries weight for Tourette's
The heads in paragraph 9.14 of the SEND Code of Practice guide the council's decision: attainment and rate of progress, the nature and extent of needs, what school has done, whether progress depends on intervention and the child's physical, emotional and social development. For Tourette's, feed them with:
- A tic diary covering both settings: type, frequency and duration of tics, and when suppression is happening
- Dated accounts of the after-school release: how long it lasts, what it costs the evening, effects on sleep and homework
- The school's behaviour log, reframed: incidents that were tics or suppression overflow, with your annotations
- Letters from the GP, paediatrician or neurology, including referral and waiting list confirmations
- Examples of work output falling when tics are active, or of your child avoiding reading aloud, assemblies or busy rooms
- Anything showing what school has tried, such as movement breaks or exit passes, and how consistently it actually happens
The council must consider evidence you submit yourself under regulation 7(b), including private reports. See our full guide on gathering EHCP evidence.
Whose advice to demand under regulation 6(1)
Regulation 6(1) of the SEND Regulations 2014 lists the advice the council must gather during an assessment, and it includes advice from any person the parent reasonably requests. For a child with Tourette's, reasonable requests usually look like this:
- The neurologist or neurodevelopmental paediatrician managing the tics
- CAMHS, where anxiety, OCD features or low mood are part of the picture
- An occupational therapist, where sensory processing or handwriting is affected
- An educational psychologist briefed on the suppression pattern, so their observation is not fooled by one calm hour in class
That last point deserves a sentence in your letter: ask that observers take the home presentation into account, since a single classroom visit will usually coincide with successful suppression.
When tics are treated as behaviour
A recurring injustice for this group is the behaviour policy applied to a neurological condition. Detentions for noises, isolation for movements, escalating sanction ladders climbed by a child who cannot stop: the paper trail reads "persistent disruption" when it should read "unmet need". Do not burn energy fighting each sanction one by one. Put the medical position in writing to school, then use the whole behaviour log as evidence in the assessment request. It proves the need is affecting school life and that the current approach is not working, which is exactly what paragraph 9.14 asks about.
Brush-offs with no legal force
"We never see tics at school" ignores suppression and answers a question nobody asked; the test is whether needs may exist, not whether staff have witnessed them. "It's a medical issue, speak to the hospital" forgets that the E in EHC stands for education and that assessments join education, health and care on purpose. "He is not behind academically" swaps the statutory test for an attainment rule, and rules applied to every child regardless of circumstances are unlawful blanket policies. If your request is refused, the letter must contain appeal rights and mediation information (regulation 5(3)), and the appeal itself goes to the SEND Tribunal on form SEND35A with no fee.
Want the whole request pack written for you?
EHCPhelp turns 15 minutes of questions about your child into the finished EHC needs assessment request: formal letter citing the legal test, detailed parental views that capture the suppression story, an evidence checklist, a school letter and a deadline timeline. Free preview available first.
Frequently asked questions
School says they barely see any tics. Does that sink our request?
No. Many children suppress tics at school at huge cost in concentration and energy, then release them at home. The absence of visible tics in class is not the absence of need; it can be the clearest sign of it. Your dated home diary showing the after-school explosion is central evidence, and regulation 7(b) requires the council to consider what you provide.
My child keeps being sanctioned for noises and movements. What can I do?
Tics are involuntary, and punishing them as defiance is a misreading of the condition. Put the diagnosis or referral in writing to school, ask for behaviour records to be reviewed alongside it and use those same incident records as evidence in your EHC needs assessment request, because they show unmet need and the school's approach not working.
Does Tourette's count as a special educational need?
It can. The legal test in section 36(8) of the Children and Families Act 2014 asks whether your child has or may have special educational needs and whether an EHC plan may be necessary. Where tics, suppression fatigue, anxiety or the common co-occurring conditions affect learning or access to school, that test is squarely engaged. No specific diagnosis list exists in law.
Which professionals should the assessment hear from for Tourette's?
Under regulation 6(1) the council must seek advice from any person you reasonably request. For Tourette's that often means the neurologist or neurodevelopmental paediatrician who knows your child, CAMHS where anxiety or OCD features are present, and an occupational therapist where sensory needs are part of the picture.