Hair Sensitivities Were an Important Clue to Late-Onset Autism

By Elayne Pearson, C.A.S., Special-needs Preparedness Specialist, is an award-winning writer, poet, presenter, advocate, author, and actress.

Sometimes sensitivity to touching hair, touching the face, or putting inanimate objects that might put pressure on the hair or face can be a sign of late-onset autism. In our case, this was particularly confusing until we figured out what was going on.

It can also be quite stressful.

Our Daughter Started out Without Sensitivities

In the late 1980s, individuals with disabilities were coming into the bright spotlight of media and society, and my husband, Rod, and I vowed we would never keep Heidi (our sweet little daughter with Down syndrome) “shielded” at home like families frequently did in the past. Her sisters were proud of her, too, despite frequent rude stares from others.

One thing I always did to bolster our confidence before going out with my little chickadees was make sure their faces were clean and hair was brushed, with a bow, barrette, or headband added — including little Heidi. Her munchkin-angel face looked even cuter with curls, ribbons, and bows.

Then Everything Changed Years Later

Fast forward a few years. Heidi’s late-onset autism (unbeknownst to us) created an extreme sensitivity with anything around her face, such as lip balm, sunscreen, eyeglasses, and all hair accessories. First, her annoyance was baffling, then frustrating, then down-right aggravating. Heidi detested anything in her hair, and seemed oblivious to pain when she pulled out a barrette, curler, flower, elastic, or ribbon.

It drove me crazy.

We finally had to accept who Heidi was – unkempt hair and all.

I was grateful that years earlier I’d attended cosmetology college and knew what to do. I resigned to fairly short hair for Heidi. It was bittersweet.

We were all learning to truly adapt to her complex idiosyncrasies and sensitivities. Heidi would eventually be dual-diagnosed Down syndrome with autism at age 13. Frankly, it was a true adventure.

That was when I was inspired to become a Certified Autism Specialist™ (CAS) to learn to better understand my daughter. While people that take the certification are typically therapists and educators who work with special needs children of all types, I knew it would help me to understand my own child better. It has been a huge asset to me and our whole family. The Autism Certificate is also an option for someone who does not already have a master’s degree. The CAS has helped me learn how to better work with Heidi across all different areas of life.

Today, our four girls are grown, and truly amaze my husband and I, and now, I’m a hair-cuttin’ grandma!

When Sensitivites are Too Strong for the Salon: Tips for Doing it at Home

I love sharing hair tips to families affected by autism or other special needs. If the busy barbershops or smelly salons are just too stressful, you can do it at home. How? Keep it UP!

BUY UP ~ Hair cutting scissors are slightly different than paper or fabric scissors, and I recommend buying shears with shorter blades, around 2 inches long. They’re easier to maneuver around the ears, etc., and help avoid eye injury. For the short cuts for boys, get a good quality of clipper (and the clip-on guides) as you can. Consider advice from professionals.

PLUG UP ~ Some electric hair trimmers have a loud motor, especially resting on the head near the ears, and may be too noisy for individuals with hypersensitivities. Some families modify this with a set of ear plugs during haircuts. (If buzzers are too much, you may need to resort to scissors and a comb like great grandma did.)

WATCH UP ~ It helps to watch online demonstrations of kids’ haircuts, or you may just write notes of barbers and beauticians. Choose simple styles. Remember, hair always grows back, and you’ll get better with practice.

SPEAK UP ~ I planted the seed and mentioned our grooming plans to prepare Heidi before actually doing her haircut and nail clipping, so she could adjust and (hopefully) comply. However, I also rewarded her by doing our project while she watched a favorite video movie.

STICK UP ~ Some families have haircuts scheduled on daily/weekly/monthly grooming charts to keep consistency and use stickers or other rewards. The more regular a caregiver helps and supports unpleasant tasks, the child generally adapts eventually, so please don’t avoid the challenge. Haircuts are quite energizing  ̶  even liberating, we’ve found.

WASH UP ~ Heidi wrestles with anxiety, so I found the best time to cut her hair was after a nice, hot bath with a handful of calming Epsom salts added. I planned it when there was plenty of time and not much happening. Some parents cut the hair first, then have the child/teen go shower/bathe, but you can experiment.

PAIR UP ~ Sometimes I’d purchase convenient shampoo with conditioner blends for Heidi. However, I discovered they didn’t always work best for her “rat’s nest” in the back — so spray-on hair detanglers helped those trouble spots.

SET UP ~ Before her haircut, I would spread out a large beach towel or old sheet on the carpet where she’d sit to watch her movie, and it caught most of the hair. A small waste paper basket was moved nearby us for nail clippings, too.

PASS UP ~ Heidi hated the stiff plastic haircutting cape or towel around her neck, so I just skipped it, and knew I’d simply wash whatever she was wearing after. Sometimes she refused to change her outfit till bedtime. We survived.

BLOW UP ~ Since Heidi detested the cape around her neck, I would gently blow off some of the itchy hair as I did the trimming. Other times a dry washcloth helped, or a hairdryer set on low. Tune in, and do what seems right for your loved one.

HEADS UP – During haircuts, some people with hypersensitivity will impulsivity shake their head, bend over, or swat your hand away, etc. This can be very tricky near sharp scissors/razors, so be acutely aware. Speak soothingly, positively, and realize you may need breaks during the process.

TRIM UP ~ Families with special-needs are very busy, and haircuts take time and patience. Sometimes I simplified and just trimmed Heidi’s bangs out of her eyes to get by, so that’s an option.

GEAR UP ~ There are dry shampoo sprays with powder and chemicals to absorb excess body oils for in-between washings. I avoided them, and any aerosol which allows harsh chemicals access to Heidi’s lungs, etc. There are also amazing waterless shampoos available, formulated for people who are bedridden.

READ UP ~ Coconut oil is an economical chemical-free hair dressing, especially good for very dry hair. The Coconut Miracle by Dr. Bruce Fife encourages cooking with coconut oil to naturally help your family have healthier, more manageable hair, clearer skin, plus amazing health benefits.

PUT UP ~ After one task, we hurry to the next, right? Yet in a special-needs home, always put away the sharp scissors, electric clippers, and small hair clips to avoid injury, damaged furniture, or choking hazards. Treat them with care, and they’ll serve you well.

If you are a parent or caregiver of someone with autism, consider becoming a Certified Autism Specialist™ or earning an Autism Certificate. Or encourage your therapists to do so, as you might be surprised how few truly have autism-specific background and training.

Good luck!

God bless, Elayne Pearson, C.A.S.

P.S. ~ Hey, don’t forget about your own hair, too!

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