What is Trichotillomania? Better Understanding for Special Needs Parents

Trichotillomania is considered an obsessive-compulsive and related disorder (DSM-5) and a body focused repetitive behavior. It is characterized by repetitive pulling of hair and results in noticeable. By better understanding your child’s diagnosis, you can better respond to some of the challenges your child and family are facing.

Knowing more about a diagnosis will help you gain awareness.

We will also explore some ways to cope with some of the challenges and care for yourself in the process.

* Disclaimer: I would like to remind the reader that I am not a medical professional and this information is being shared from my personal experiences and research. Please see my Disclaimer for more information.)

What is Trichotillomania?

Trichotillomania is the uncontrollable urge to pick or pull out body hair. This can be hair from the scalp, eyebrows, eyelashes, and/or the body. This results in noticeable bald spots.

Trichotillomania is classified under Obsessive-Compulsive and Related Disorders in the DSM-5.

It is also classified as a type of Body Focused Repetitive Behavior (BFRB). Other types of BFRB include self-grooming habits that result in damage to the body. This can include picking, pulling, and/or rubbing of skin or nails.

Our Experience with Trichotillomania

Two of my children have experienced trichotillomania. One child pulled out handfuls of hair as a result of a new medication. Once the medication was flushed out, the hair pulling stopped. My other child has picked his hair for over three years resulting in bald spots covering over half his head at times.

I am still learning about how to best help my child live with trichotillomania. It appears to ebb and flow. 

You know your child best. Gaining information is helpful, but then apply it to your unique situation.

For example, my child has told me and other adults how to interact when he is picking his hair. While it may be tempting to prompt him to stop, remember that he will feel a need to restart the process and pick even more hair helps others from prolonging the cycle. 

But, this can be difficult! Give yourself grace. I can really struggle not to prompt an end to the hair picking if it has gone way past the usual asleep in bed time.

Learn More From Your Child

One of the best strategies we have found is asking open ended, non-judgemental questions.

I was very worried my child was stressed or anxious about something and that is why he was picking his hair. While this may be the case at times, he will also pick during movies, on car rides, or when falling asleep.

Instead of asking about the hair picking, I have been asking how he is feeling on a scale of 1-10. If he tells me he is upset that way then I help him.

Ask your child if they want help to reduce hair picking. There have been very few occasions where my child has looked in the mirror and been concerned with the bald spots. Once or twice a school year he may bring me the hair at  the end of the day, but is not concerned much longer than an hour. Other times, he is concerned he may be bleeding and requires reassurances.

It is very difficult for people experiencing trichotillomania to stop hair picking even if there is a great desire to do so. Speak with your child and proceed based on desire level. Your child’s doctor may have some additional resources or ideas to help.

Here are a few books for young children available on Amazon to help with this discussion.

Why Not Just Shave the Hair?

Again, this goes back to talking with your child. My child did not care that there were bald spots and did not want to have his head shaved until very recently.

When my child did not want his hair shaved, I chose to respect his choice. If I had tried to fight it out I may have managed to get part of his head shaved, but not the whole head. I probably would have hurt him and myself in the process. It definitely would have hurt his feelings and our relationship.

Now shaving a girl’s hair is typically not done. You may find that having longer hair helps cover more obvious bald spots. This is something to talk about with your child as appropriate. 

Another consideration is that shaving the hair on your child’s head may lead to hair picking from the eyebrows, eyelashes, or body. Trichotillomania is not limited to hair on the scalp.

How Can I Help My Child?

There are many ways you can help your child! Firstly, you are reading about your child’s trichotillomania. Knowing more about it is a way to gain understanding and potential ways to support your child.

In addition to reading and learning about trichotillomania, ask your child’s doctor and/or therapist about resources and insights.

Again, ask your child how you can help them. Do they want to stop picking? Does it bother them? Do they want help or not right now? Would they like a haircut or to leave it alone?

Your child may not yet be old enough to answer some of these questions and the answers may change over time.

Here are a few more books available on Amazon to help with talking with children.

Communicate your child’s needs and wants to the entire care team. Teachers, child care workers, and family members will probably not know how to respond. Advocate for your child and let them know. My child will now let familiar school staff know not to talk to him while hair picking or he will have to start all over. His team at school also knows that if he has been picking and abruptly stands up that he is just going to get a paper towel to clean up.

A Note on Bullying

No parent wants their child to be bullied. WIth something as obvious as bald spots, I understand the concern.

My child is in a very small, special needs school. While I have heard slightly older peers ask about his hair or comment that he still has bald spots, this is extremely rare. While he is in a fairly isolated setting, bullying or teasing has never been an issue.

On occasion older adults who do not know much about his unique needs may comment or ask questions. However, for the most part friends, siblings’ friends, and people in the community have not responded negatively.

In fact, like my misconception that hair picking equals anxiety, people seem to assume when my child has more hair that he is somehow less anxious or doing better emotionally. I have not seen this to be a true connection to his overall happiness level. In fact, his picking tends to ebb and flow throughout the year.

Helpful Strategies for Your Child

Keeping hands occupied is a common strategy. One way we have found success is with Thinking Putty. It is slightly thicker than other doughs and some of them will change color with body heat or have unique scents…and they will not ruin most surfaces! Plus the company that makes the putty actively employs adults with a variety of disabilities to foster vocational skills and economic self-sufficiency.

Other fidgets such as spinners, bubble wrap, and Rubik’s Cubes have been helpful.

Another strategy is the use of hair gels that slow down the pulling out of hair and reduce the size of bald spots.

Tight hats have also been referenced by some as being helpful. My child does not like them, but they are worth a try.

We have not yet tried these discrete arm bracelets that vibrate as a reminder when held in a programmed position (such as upraised in a hair picking position). These appear more helpful once the child expresses a desire to reduce the hair picking. I think my son would currently ignore it or take it off, but the reviews indicate they have helped many people with a variety of body focused repetitive behaviors.

Helpful Strategies for You

It can be difficult to react calmly to repetitive behaviors. This is where self-care becomes very important. If you are already drained emotionally and physically it is very difficult to respond calmly.

We have already discussed several strategies! These are:

– Learn and gain knowledge

– Reach out to your child’s doctor and/or therapist for information and resources

– Advocate for your child so that the entire team is responding in the same way (Bonus: your child will come home from school less stressed if there is a unified response.)

– Speak with your child about ways to help

And through all steps – give yourself grace!

• You are learning.
• You are doing your best. 
• It can be difficult to always remain calm, take breaks as needed.
• Remember your child is doing their best and is not necessarily in crisis or high levels of stress because they are hair picking.
• Hypervigilance is a real phenomena for special needs parents. This can make it challenging to not worry that something is wrong or that you need to do something to fix the environment or lower some stressor for your child.

We have so much to learn as special needs parents and caregivers. An encouraging quote for me is

Do the best you can until you know better. Then when you know better, do better.

Maya Angelou

Here are a few more books available on Amazon for parents and older children/teenagers.

Some More Self-Care Strategies for You

Affirmations or Mantras

It can be difficult to be calm when your child is engaging in any repetitive behavior. Even more so if stepping away to take a break is challenging. For example, if I walk downstairs because my child is up for over an hour past bedtime picking hair, he will follow me or restart and pick longer. At best, going to the bathroom is a strategy.

A great thing about affirmations and mantras is you can use them anytime and anywhere. You can repeat them silently. 

Some examples you could try are

• I am ok, he is ok.
• Calm calm calm
• All is well

You will find more ideas in Affirmations for Special Needs Parents.

Resources for Learning More About Trichotillomania

There are several books and websites addressing this topic. There are also books designed for children and to be used together with your child.

Books

Websites

Info from the Mayo Clinic

The TLC Foundation for Body Focused Repetitive Behavior has wonderful information and a free downloadable booklet for treatment guidelines.

What is Trichotillomania? A Guide for Special Needs Parents: Summary

When your child receives a diagnosis, learning more about it is the first step toward helping your child and the entire family.

Trichotillomania is a complex obsessive compulsive disorder. Remember to give yourself grace as you learn new ways to help your child and to take care of yourself along the way.

Make sure you are caring for yourself so that you can best care for your family. Another article on getting started with self care can be found through this link.

Looking to learn more about special needs? Get a start by learning more about Special Needs Acronyms.