As a special education advocate, I often hear parents describe incidents in which their child came home from school in tears because their teacher scolded them in front of the entire class for vocal tics.
This is far more common than people realize. Students with Tourette syndrome are often disciplined and denied accommodations that address their symptoms and are expected to meet classroom expectations without supports that account for the condition.
Parents will spend months securing an IEP or 504 plan for their child, but that is only just the beginning of the many battles they’ll have to fight. Decisions about accommodations, services, discipline, evaluations, and implementation continue throughout a child’s education.
Most of the time, these decisions are made during IEP meetings, disciplinary reviews, reevaluations, and other general discussions regarding the child’s performance in school. Parents who understand how those processes work are generally better positioned to identify problems and advocate for appropriate supports.
In what follows, I’ll focus on the practical side of school advocacy such as preparing for IEP meetings, how to approach denial of service, and much more.
Before the IEP meeting: how to walk in prepared
Most IEP meetings are greatly impacted by what happens before they begin. The preparation for an IEP meeting will determine which issues are raised, what evidence the team will review, and whether the team will have sufficient information to make informed decisions about a student’s IEP.
Gather documentation that shows educational impact
Keep a record of how Tourette’s Syndrome impacts your child’s education. Some examples of relevant documents include:
- Medical Documentation
- Private Evaluations
- Student Report Cards
- Correspondence from teachers
- Disciplinary records
- Student Progress Reports
- Examples of student-completed schoolwork
You should keep a simple symptom log as well. It does not have to list every time your child has a tic. Document the patterns of symptoms that negatively affect your child’s academic performance. For example, symptoms often worsen with testing, when working independently, while switching tasks, or when your child experiences stress or anxiety due to a specific situation.
Review the current IEP or 504 Plan
Review the current IEP or 504 Plan. Read through all of your student’s IEP/504 Plan’s accommodations. All of the accommodations listed should provide guidance on what school staff should do when implementing them. School staff will frequently misinterpret broad language and therefore provide inconsistent support for students.
Goals in IEPs or 504 Plans also need to be reviewed. These goals should be measurable, with evidence from objective data documenting progress towards achieving them. If you cannot measure progress toward the goal, then you may never know if your child is making sufficient progress under the current IEP/504 plan.
Submit requests before the meeting
It would be helpful to submit written concerns/questions/request(s) prior to the meeting. This allows the team members attending the meeting to read over and prepare to address them. Parents most typically send in written requests for:
- Additional testing (evaluations)
- New accommodations
- Staff training
- Behavioral supports
- Revision of existing services
Bring questions that require specific answers
Questions often produce more useful information than general discussions. Consider asking:
- How is the implementation of accommodations monitored?
- What data shows the current plan is effective?
- Which staff members are responsible for carrying out accommodations?
- Have any accommodations been difficult to implement?
- Does the school believe additional evaluations are necessary?
Request evaluation data in advance
Parents should request copies of evaluation reports and assessment data before the meeting whenever possible.
Under IDEA, parents have the opportunity to review student records; reviewing evaluation data prior to this meeting will allow you to create a list of potential questions, missing information, and/or conclusions that could be clarified before making a decision about your child’s future.
What can you do if the school disciplines your child for tics?
Was the behavior actually related to Tourette syndrome? Was the behavior actually related to Tourette syndrome?
The first step is determining whether the behavior that triggered discipline was connected to Tourette syndrome.
A large number of disciplinary issues begin with a lack of understanding regarding disability-related behaviors. Oftentimes, school personnel misunderstand these behaviors as misconduct. Common examples include:
- Vocal tics (grunting, clearing throat, etc.) perceived by educators as disruptive classroom behavior
- Motor tics (flailing arms, leg movements, etc.) interpreted by educators as intended actions
- Repetitive behaviors associated with OCD mistaken for refusal to follow directions
- Leaving the classroom to manage symptoms labeled defiance
When a disciplinary issue arises, ask the school to document exactly what behavior led to the referral or punishment. Specific descriptions are easier to evaluate than broad labels such as “disrespectful,” “disruptive,” or “noncompliant.”
What is a non-punitive tic policy?
Many families benefit from requesting a written statement that tics should not result in disciplinary consequences. Sometimes called a non-punitive tic policy, this type of accommodation helps create consistent expectations for teachers, substitute staff, and administrators.
If the student already has an IEP or 504 Plan, consider requesting that the accommodation be included in the document itself.
When does a manifestation determination review apply?
Students receiving services under IDEA may have additional protections when disciplinary removals become significant. The school system is required to conduct a Manifestation Determination Review to determine whether the student’s disability contributed to the removal.
That review becomes especially important when tic-related behavior contributes to suspensions or other serious disciplinary actions.
Documentation matters throughout this process. If discipline becomes an ongoing issue, keep copies of:
- Disciplinary referrals
- Suspension notices
- Incident reports
- Emails from teachers or administrators
- Notes from meetings discussing the incident
Should you start with education or confrontation?
Parents sometimes assume these situations require immediate legal confrontation. Many Tourette syndrome discipline issues stem from a lack of information.
A teacher with no experience working with a child with Tourette’s syndrome will likely misinterpret complex vocal tics as disruptive behavior. In addition, an administrator may have no understanding of how anxiety, ADHD, OCD, or other associated symptoms impact a child’s ability to behave appropriately during stressful and/or overwhelming situations.
For that reason, education is often one of the most effective advocacy tools available.
Many parents bring a one-page fact sheet on Tourette syndrome to IEP meetings and request that it be placed in the student’s file and shared with staff who work directly with the student. A short explanation of common tics, symptom fluctuations, and appropriate classroom responses can prevent future misunderstandings.
What if the school continues disciplining your child for disability-related behavior?
If the school continues disciplining a student for disability-related behavior after receiving that information, parents may:
- Ask the school to schedule an IEP meeting
- Ask the school to perform a manifestation determination review
- Challenge the disciplinary decision through district procedures
- File a Section 504 complaint with the Office for Civil Rights
This will generally allow the parties to discuss relevant facts and the child’s disability-specific needs.
Tourette Syndrome, ADHD, OCD, and Other Co-Occurring Conditions
Why does comorbidity matter during IEP development?
Many students with Tourette syndrome have more than one diagnosis affecting their education.
ADHD, OCD, anxiety disorders, learning disabilities, and sensory processing challenges frequently occur alongside Tourette syndrome. In many cases, the condition creating the greatest academic difficulty is not the tic disorder itself.
Sometimes schools focus on tic management instead of other challenging issues that may be more subtle or less obvious but have a greater impact on how students learn, behave, and perform in school.
For example, one student might have somewhat minimal tics but struggle to complete homework due to executive function deficits caused by ADHD. Another student might suppress their tics all day at school and spend most of their time managing obsessive thoughts, compulsive behaviors, or anxiety.
Each condition should be evaluated based on its educational impact.
Is the IEP addressing every area of need?
Parents should review whether the IEP addresses all documented areas of need. Common examples include:
- Challenges with executive functioning due to ADHD
- Task initiation and task completion challenges
- Anxiety regarding participation in school activities, taking tests, and social interactions.
- OCD symptoms that interfere with completing work efficiently
- Organizational difficulties affecting academic performance
- Sensory needs that affect classroom participation
When a school identifies multiple disability-related needs, those needs should appear throughout the IEP. Accommodations, services, present levels of performance, and goals should reflect the student’s complete profile rather than a single diagnosis.
Should each condition have its own goals and supports?Should each condition have its own goals and supports?
Goals deserve particular attention.
A common mistake is setting goals for one condition while leaving other documented challenges unaddressed. For example, a student may receive accommodations for Tourette syndrome but have no goals addressing executive functioning, organization, self-management, or anxiety despite clear evidence that those areas affect educational performance.
During meetings, parents can ask very direct and simple questions:
- Which needs are our child’s goals targeting?
- Which needs are addressed through accommodations?
- What data does the school use to support its current approach?
- Are any documented areas of need missing from the plan?
In some situations, separate goal areas may be appropriate. A student might have one set of supports related to Tourette syndrome and additional goals addressing executive functioning, emotional regulation, organizational skills, or task completion.
How do multiple conditions affect learning together?
The combined effect of multiple conditions is also worth discussing with the IEP team.
Schools sometimes evaluate each diagnosis in isolation. The school may conclude that tics alone create a manageable level of impairment. The same conclusion may be reached for ADHD or anxiety when each condition is considered separately.
In contrast, the educational impact of the interaction of tics with ADHD, OCD, anxiety, and/or other disabling disorders is usually quite significant over a 7-hour school day.
For example, a student who has to suppress tics during instruction likely has to manage ADHD related problems of sustaining attention as well as possibly OCD type obsessions and compulsions, and anxiety or sensory processing issues at the same time. This could lead to decreased ability to concentrate, maintain stamina to complete tasks, regulate emotions, and function academically, among other things.
As you discuss support services for your child with the IEP Team, consider focusing on the big picture of the child’s overall functioning instead of trying to evaluate each diagnosis as a separate issue.
What to do when the school isn’t following the IEPWhat to do when the school isn’t following the IEP
An IEP only works when it is implemented consistently.
Many parents discover implementation problems months after they begin. A testing accommodation is never provided. A scheduled service is missed repeatedly. A teacher is unaware of accommodations that are supposed to be in place.
The parents’ first objective is to prove what happened. Documentation will help achieve this.
Start with documentation
Documentation is the foundation of every implementation dispute.
Keep a record of missed services, accommodations that were not provided, and incidents that may be related to implementation failures. Include dates, descriptions of what occurred, and any communication with school staff.
Some examples of things to document:
- Missed extended test time
- Scheduled counseling sessions being missed
- Movement breaks being denied
- Substitute teacher refusing an IEP approved accommodation
- Disciplinary action related to behavior addressed in the IEP
Documenting a pattern of events over several weeks is often stronger than documenting a single isolated event.
Notify the school in writing
Once a pattern emerges, notify the school in writing.
The goal is to create a clear record of your concerns while giving the school an opportunity to correct the problem. Written communication is often more effective than relying on phone calls or informal conversations.
Stay focused on the facts:
- The accommodations or services missed
- Date of the concerning event.
- Frequency of the incidents.
- The impact on the student.
A factual approach helps keep the discussion centered on implementation rather than blame.
Request a meeting to address implementation gaps
Many parents wait until the annual review to raise concerns.
You do not need to wait.
Parents can request an IEP meeting at any point during the school year if there are concerns about implementation, progress, accommodations, or services.
Use this meeting as a chance to go over documents, figure out why the issue is occurring, and develop a plan of action to fix it. It may be that some implementation problems occur due to changes in staffing, lack of good communication or unclear expectations about roles and responsibilities on the part of the school staff, and not because the district is intentionally choosing not to implement the IEP.
When should you file a state complaint?
If the school continues to ignore documented concerns, a state complaint may become appropriate.
State complaint procedures vary somewhat by state, but the process generally involves providing evidence that the school failed to implement part of the student’s IEP.
Documentation is particularly important at this stage of the process. Documented records of missed services, documents related to communication (written), requests for meetings or conferences, as well as numerous documented instances of service failure, can be used as the foundation of a complaint.
When does noncompliance become a legal issue?
Parents who have experienced repeated violations of their rights under the law, suffered serious educational harm, or have ongoing issues related to the development of their child’s IEP would greatly benefit from contacting a Special Education Attorney to discuss their options and timeline.
Building the record over time
Many implementation disputes are won or lost based on documentation.
The Advocacy Circle’s tracking tools help parents record missed services, accommodation failures, and implementation concerns as they occur. Organized records make it easier to identify patterns, prepare for meetings, and provide the documentation often required when filing a state complaint.
Bullying, peer relationships, and the school’s responsibility
Schools are responsible for addressing disability-based bullyingSchools are responsible for addressing disability-based bullying
Bullying can have a significant effect on a student’s ability to access education.
For students with Tourette syndrome, bullying often centers on visible or audible symptoms that peers do not understand. Motor tics, vocal tics, compulsive behaviors, social differences, and anxiety-related behaviors can all become targets for teasing or exclusion.
Schools have legal obligations under IDEA, Section 504, and Title II of the ADA to respond when disability-based bullying interferes with a student’s access to educational opportunities. A school cannot ignore bullying simply because the conduct occurs between students.
Parents should keep records of incidents, write down any concerns they have about bullying, and ask the school what it plans to do to prevent it.
Can bullying-related supports be included in the IEP?Can bullying-related supports be included in the IEP?
They can.
If bullying is affecting attendance, participation, emotional well-being, academic performance, or access to services, the issue may belong in the IEP discussion.
Depending on the student’s needs, schools may consider supports such as:
- Staff-led group social skills training sessions
- Regular check-in/check-out systems with a trusted adult
- Increased adult supervision during peak risk hours
- Peer education programs that promote disability awareness
- Counseling or psychological support services
The appropriate supports will vary from student to student, but the goal is the same: reducing barriers that interfere with educational access.
When does bullying become disability harassment?
Not every incident of teasing rises to the level of disability harassment.
The concern becomes more serious when conduct is based on the student’s disability and is severe, persistent, or pervasive enough to interfere with educational participation.
Parents should document formal complaints about their child experiencing bullying when they can show repeated incidents over time, and that the bullying was directed towards the child’s disability.
A written report creates a record of the concern and triggers the school’s responsibility to investigate and respond.
Social isolation can be an educational issue
Parents sometimes focus on grades and services while overlooking social participation.
For some students with Tourette syndrome, social isolation becomes one of the most significant barriers at school. A student may avoid group activities, struggle to form friendships, withdraw from classroom participation, or expend considerable energy to hide symptoms from peers.
Those difficulties can affect educational performance even when grades remain relatively strong.
If social isolation is affecting the student’s school experience, it should be discussed with the IEP team. Educational impact includes more than academic performance, and social functioning may be an important part of the student’s overall needs.
Transition planning for teens with Tourette syndrome
Transition planning starts before graduation
Transition planning becomes a formal IDEA requirement by age 16, although many states begin earlier.
For students with Tourette syndrome, transition planning often extends beyond academics. The process may include postsecondary education, employment, independent living skills, self-advocacy, and disability disclosure.
Planning is most effective when it develops gradually over several years rather than during a student’s final year of high school.
Preparing for college disability services
College operates differently from K-12 education.
IEPs do not follow students into college, and colleges are not responsible for identifying students who may need accommodations. The student must generally initiate the process.
Families can begin preparing by talking about:
- What to ask for in terms of accommodations
- What documentation might the college require
- How disability services offices operate
- Which accommodations were effective in high school
Students who understand their own needs and accommodations before graduation are often better prepared to navigate disability services independently.
Discussing disclosure in college and the workplace
Many teenagers eventually face questions about whether to disclose Tourette syndrome to professors, employers, supervisors, or coworkers.
Disclosure decisions are highly personal and depend on the situation. Some students choose to disclose early to explain symptoms and request accommodations. Others prefer to disclose only when accommodations become necessary.
Transition planning provides an opportunity to discuss the advantages, limitations, and practical consequences of different approaches before students encounter those decisions on their own.
Teaching self-advocacy over time
One of the most important goals of transition planning is helping students learn to advocate for themselves.
Parents often spend years leading meetings, communicating with teachers, and requesting support. As students approach adulthood, they should gradually take a more active role in those conversations.
That process may begin with simple steps:
- Attending IEP meetings
- Describing accommodations that help them learn
- Explaining how Tourette syndrome affects them at school
- Asking questions during meetings
- Participating in goal-setting discussions
Over time, many students become comfortable leading portions of their own IEP meetings.
The long-term goal is not simply to understand Tourette’s syndrome. It is understanding how to communicate needs, request support when necessary, and navigate educational and workplace settings with increasing independence.
Conclusion
Advocating for a child with Tourette’s syndrome often involves more than obtaining an IEP or 504 Plan.
Parents may find themselves preparing for meetings, addressing implementation problems, responding to disciplinary issues, documenting bullying concerns, or ensuring that ADHD, OCD, anxiety, and other co-occurring conditions receive appropriate attention. Each situation requires a slightly different strategy, but the underlying principles remain the same.
Parents who are more effective over time are usually the ones who stay informed, keep clean records, communicate their concerns in writing, and focus discussions on evidence rather than assumptions.
Documentation provides clarity when disputes arise. Documentation also identifies service gaps. Organized advocacy ensures that when a school seeks additional information, it does not lose sight of the main goal: the child’s educational needs.
Tools to support your advocacy
The Advocacy Circle was built to help parents manage the practical side of special education advocacy.
Our tools can help you:
- Prepare for IEP and 504 meetings
- Organize evaluations, reports, and school records
- Track accommodations and services over time
- Document missed services and implementation concerns
- Maintain records that may be needed for complaints, disputes, or future meetings
Advocacy becomes easier when information is organized, documentation is accessible, and important details are not left to memory.
