What To Do After a Tourette’s Diagnosis
Ability Central shares the first steps to take after receiving a diagnosis of Tourette’s Syndrome (TS). This article shares service providers, communication challenges, and treatment options.
By Ability Central
15 December, 2023
Around 1 million people in the US have some kind of tic disorder. Of those, between 350,000 and 450,000 people are diagnosed with Tourette’s Syndrome (TS). However, much is still unknown about tic disorders like Tourette’s. So, what do you do after you receive a diagnosis? If you or a loved one has recently been diagnosed with TS, you probably have a lot of questions!
This article will address:
- How do I find service providers for Tourette’s Syndrome (TS)?
- What communication challenges should I know about TS?
- What lifestyle changes should be made for someone diagnosed with TS?
- How can family members and friends help their loved one who has been diagnosed with Tourette’s?
- What treatments are available for Tourette’s?
- Where can I get more information about TS?
How do I find service providers for Tourette’s Syndrome (TS)?
Many people with TS are able to manage their symptoms working only with their primary care provider (PCP). However, some treatments for TS require two types of specialists: a neurologist, to care for the nervous system, and a psychiatrist or psychologist to help with behavioral therapy and the social impact of tics.
There are no distinct tests used to diagnose someone with Tourette’s. Typically, a primary care physician relies on family history and observations from a person with tic symptoms or their loved ones. If tics are so severe that they interfere with daily life, or if further tests are needed to rule out other conditions that cause tics, a PCP will often write a referral to see a specialist.
Ability Central’s Service Locator tool is a great way to find both family doctors and specialists. We maintain a huge database of non-profit organizations and healthcare providers who support people with Tourette’s and other tic disorders. Similarly, Tourette.org offers a provider finder tool that allows you to search by location, age, and specialization needs.
What communication challenges should I know about TS?
People with TS have two kinds of tics: motor and verbal. Both kinds of tics can cause major communication disruptions. For example, someone with Tourette’s might repeat words or syllables during a conversation or have a motor tic, like clapping or repeatedly closing their eyes, that makes it difficult to read or write things down.
Written communication challenges are often an everyday issue for people with TS. These challenges may include:
- Sloppy handwriting
- Frequent erasing
- Time-consuming efforts for neatness
- Difficulty with spacing, punctuation, capitalization
- Refusal to write
On the other hand, verbal communication difficulties might include:
- Conversation disruptions from phonic tics, like persistent throat clearing, coughing, squealing, barking, grunting, screaming, or other noises.
- Palilalia, in which a person with TS repeats their own words.
- Echolalia, in which a person with TS repeats other people’s words.
- Coprolalia, a rare condition where people with TS blurt or shout obscenities, is often the first thing people associate with TS due to misrepresentation in media. However, coprolalia affects only 10-15% of people with TS.
Recording devices or apps can be helpful for people with TS, as motor tics make it a challenge to take notes or focus on long discussions. Ability Central has a searchable list of mobile devices that can also help meet your needs.
What lifestyle changes should be made for someone diagnosed with TS?
Tics can be frustrating, frightening, or embarrassing for people with Tourette’s. However, it’s sometimes possible to reduce the frequency and severity of tics with certain lifestyle changes. These might include:
- Avoiding stressful situations.
- Making a “calm room” available, a private and safe space where someone with Tourette’s can release a tic away from others.
- Getting involved in high-focus activities like playing an instrument or competing in sports. Many people with TS note that their tics happen less often and more mildly when they’re focusing on something else.
Dietary changes may also help. Ask your doctor for recommendations on foods and supplements shown to help with tics. Some people with TS report having milder, less frequent tics after:
- Adding more foods with magnesium and vitamin B-6, like fish, starchy vegetables, non-citrus fruits, organ meats, and fortified breakfast cereals.
- Adding more foods with Omega-3 fats, including shrimp and wild Atlantic salmon.
- Limiting caffeine, sweeteners, and preservatives.
How can family members and friends help their loved one who has been diagnosed with Tourette’s?
Tic disorders like Tourette’s can often make someone feel isolated, embarrassed, or anxious. The best thing family and friends can do for a loved one with TS is to offer moral and practical support.
NeuronUp offers a list of 12 ways to support someone who has TS. These include:
- Don’t stare at the person or draw attention to their tic.
- Ignore tics during conversation, or simply don’t react when they happen.
- Be patient as they communicate.
- Follow their lead in terms of discussing their tics.
- Never try to “fix” someone’s tics.
- Don’t point it out if they develop a new tic.
- If a person with Tourette’s gets overwhelmed, ask if they’re doing all right without blatantly calling out their tics.
- You can also divert their attention or offer an escape, both of which can help someone with TS “reset” their brain.
- Offer a hug or other physical contact if appropriate.
- Don’t make jokes about a person’s tics.
- Don’t accuse someone with TS of being “annoying” or “making a scene.”
- In cases like bullying or mockery, defend your friend.
- Remember what your loved one is going through, and practice empathy.
As TS progresses, loved ones may begin to see the warning signs of a tic flareup, also called a “tic fit” or “tic attack.” This is when someone with TS experiences many tics all at once, usually in response to a stressful situation, illness, or severe overheating. Learn more about these warning signs and how to help in our article, How Should I Prepare for Adult Life with Tourette’s?
What treatments are available for Tourette’s?
Many people with TS learn to manage their tics with time and practice. In some cases, particularly when tics cause physical harm or become debilitating, someone with Tourette’s may seek additional treatment. Medications and therapies are the two primary treatments for Tourette’s.
There are many medications that can help reduce the impact of TS tics:
- Medications that block or lessen dopamine may reduce tics' frequency or intensity.
- Botulinum (Botox) injections may help relieve tics, particularly facial tics.
- Central adrenergic inhibitors can help with impulse control.
- Antidepressants may help with depression, anxiety, OCD symptoms, and other conditions that often co-exist with TS.
- ADHD medications help increase attention and concentration. However, some stimulants like Adderall or Dexedrine can also trigger or worsen tics.
Therapy options include behavioral therapy and traditional psychotherapy. Therapy can help people with Tourette’s cope with their tics as well as the mental health and social impacts of TS. Plus, comorbid mental health issues like obsessive-compulsive disorder (OCD), anxiety, depression, and ADHD commonly appear alongside TS. To that end, many people who have TS benefit from coping skills, relaxation techniques, and support networks found through traditional therapy.
Finally, deep brain stimulation (DBS) is an experimental treatment for severe Tourette’s. With DBS, a battery-operated medical device is implanted in the brain to deliver electrical stimulation to prevent the most debilitating tics. However, this treatment is very new, and more research must be done to discover if DBS is a safe and effective Tourette’s treatment.
Where can I get more information about TS?
For more information about TS, see: