Experience stories

Development, behavior and communication

For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Pitt-Hopkins syndrome.

What are the most common development options for children and adults with PTHS? How can you determine these? In which ways can you stimulate them to a maximum? 

How do you best support communication? Up to what age should you continue to provide speech therapy? Are there other ways to stimulate it?

What are the special behavioral characteristics? 

How often does autism occur and how do you recognize it? 

What do fears mean or being very excited? How do you deal with that? 

What do the stereotypical movements mean (making the same movements again and again)? Can you accept them or do you have to try to break them?

Nobody shared a story (yet) on Development, behavior and communication, please share your story on this topic!



Pitt-Hopkins syndrome
Experience stories


Deepen your knowledge of Pitt-Hopkins syndrome

We organize our stories about Pitt-Hopkins syndrome in topics. You can browse our topics below. Below each topic you might find more detailed topics with stories that might be of interest to you.

About the website contents


All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: wiki@waihonapedia.org