Parents of children with Tourette's syndrome are raising alarms over the lack of support and understanding in schools, fearing it could jeopardize their children's education. Many parents report that their children are being reprimanded for involuntary movements and sounds, leading some to avoid school for extended periods.
Tourette's syndrome, affecting 1-2% of UK school children, causes people to make involuntary movements or sounds called tics. While some can suppress their tics temporarily, it often leads to exhaustion and makes concentrating in class difficult. Parents also say that when tics are suppressed, the condition becomes less visible, which can reduce the likelihood of receiving adequate support in schools.
One mother expressed her distress, feeling as though her child's education was slipping away due to these challenges. Her son, David, tries to suppress his tics at school to avoid reprimand but is left exhausted by the effort. His tics would often resurface at home in an overwhelming way, even making it difficult for him to eat.
Schools have acknowledged the difficulties faced by children with Tourette's but many parents still struggle to obtain a proper diagnosis, which is often a barrier to accessing support services. The lack of training among school staff on Tourette's syndrome further complicates the situation.
Waiting lists for Tourette's services are long, with families often being told they are not referred to the correct treatment centers, leaving them without the necessary support for long stretches of time. Even when a diagnosis is made, treatment is rarely provided, and many families are forced to navigate the system on their own.
Parents are advocating for more consistent support across schools and local authorities. One mother, who has fought for over a year to get her son assessed for extra support, feels her child's education is in jeopardy, as schools and councils are slow to act. Many families face an uphill battle, struggling to ensure their children receive the help they need.
The Department for Education has acknowledged the challenges faced by young people with Tourette's syndrome and expressed a commitment to better supporting them in schools.
