Excoriation

Like many diagnosed with autism, our boys have comorbid diagnoses. One that is on our radar currently is excoriation, a skin picking disorder.

Psychology Today defines it this way:

Also known as excoriation disorder, or compulsive skin picking, dermatillomania is a psychological condition that manifests in the form of repetitive touching, scratching, picking, and digging at one’s own skin. It is an impulse-control disorder and one of several body-focused repetitive behaviors (BFRB) currently classified in the DSM-5 as Obsessive Compulsive and Related Disorders. Dermatillomania affects up to 5 percent of the population and approximately 75% of those are female. The difference between dermatillomania and normal picking at skin imperfections and irregularities, is that the behavior is chronic, results in tissue damage, and causes the individual marked distress and dysfunction.

Repetitive skin picking extends to pulling, scraping, and even biting both healthy and damaged skin from various parts of the body, though most often on the face, hands, fingers, arms, and legs. This behavior, which commonly begins in adolescence but can occur at any age, often results in visible skin damage and disfigurement from lesions, discoloration, open wounds, scars, and infections.

…skin picking can also occur with dermatological conditions, autoimmune disorders, opiate withdrawal, and developmental disorders such as autism.

Unfortunately, E is a skin picker. The sad part is that he is aware he has this issue, hates the fact that he picks, and yet is completely unaware of the action when doing it.

At first, we didn’t think much of it. He had a red spot on his arm here or there, but more recently it is becoming more and more of a visible issue. His arms and, to a lesser extent, his face, are covered in red marks, scratches and scabs. E, thankfully, is not yet self-conscious about his appearance so isn’t worried about how it looks. However, people of the general public see the marks, and doctors unfamiliar with his issues have expressed their concern. Honestly, it looks like he has chicken pox scabs.

Over the years, I’ve learned to ignore strangers’ looks and judgement. What bothers me is that it causes them to worry about him spreading something infectious. I guess it shouldn’t matter, but it does. If I were a parent on the outside, and I walked past a kid, playing at the park or wherever, and saw all those red spots and scabs, I’d wonder if he was sick; if he was contagious. I wish I could just carry a sign wherever he goes that says, “He’s not sick. He’s not abused. He just picks his skin.” Do I need to make him cover his arms even in warm weather to prevent the looks and curiosity? Probably not, but the worry will hover in my mind, especially when I see the judgmental looks.

I worry (and I know he does too) about the potential issues as a result of picking. Abscesses, infection, the needing of a skin graft, or even suicidal thoughts when he gets older. We are working with a psychologist and psychiatrist to help control the picking. On one hand, if it’s a stim, I hate to stifle that, but on the other hand, his health could be at risk. It would be better to adjust his stim to another activity.

One of the ideas we tried was having him wear gloves. That lasted maybe half a day. The gloves bothered him by making his hands too hot; he felt like he couldn’t play on his tablet or hold a pencil properly; all huge issues in an autism household. So, for now, the idea is abandoned, but maybe one day I’ll find just the right pair of gloves. In the meantime, E, his dad and myself all need to be vigilant and redirect him when we see him picking.

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Autism, Anxiety and more oh my!

As most of my readers know, my family and I have been on a tumultuous trip to find a diagnosis of our youngest kiddo. Early on, we knew he viewed life a bit different, but we couldn’t figure out if his behavior was unique, or if he was emulating his older brother, who is on the autism spectrum. He seemed neurotypical most of the time but had, what seemed like, behavioral and sensory issues.

At age 5 and 6 he was observed twice by the autism clinic that had diagnosed his brother, due to the increased chance of a younger child having autism when a sibling does. Both times that the doctor saw C, she felt that he was “too social” to merit a formal evaluation and/or diagnosis. Considering that underdeveloped social behavior is often a key in diagnosis, we felt that this result meant that we could move on from autism and proceed in another direction.

As he got older, he seemed to socialize appropriately, although minimally, with preschool kids and other friends. He asked to have playdates with friends, something we hadn’t yet encountered with E. He excelled in his preschool environment. At home, he still had many behavioral issues though. He was extremely sensitive emotionally, and to things like food textures and loud sounds. Red flags started showing up in my mind, making me suspect that the negative autism diagnosis was wrong.

Potty training seemed to go well enough and he did so well in preschool that he started kindergarten as planned. This is when things got really difficult. He started having potty accidents at school followed by emotional meltdowns from the embarrassment. He felt like no one liked him. It was too loud and busy. It overwhelmed him. The teacher tried his best and felt like C was just a little more emotional than other students but that he’d grow out of it. After-school pickup became the worst part of my day. He’d completely fall apart at home, often as soon as he got in the car. Then morning drop-off became a challenge. He started resisting getting dressed, getting out of the car and so on. His teacher reported that he often would curl up and cry under one of the tables during snack time, rather than choose a snack. Soon, our family life began to suffer. Hubby and I were so stressed and overwhelmed. We were struggling to find the tools to help E with his many issues, as well as figure out what was going on with C.

We made the decision to homeschool. We had already started homeschooling E, due to his intense anxiety. It seemed to help and make things easier for him. We joined an alternative school program where the boys did their work at home, led by me, then met with their official teacher weekly to review what they were learning and make sure that they were progressing. Eventually, C started to fight even going to this weekly meeting. When he did go, he wouldn’t talk much or share with the teacher, especially if I was in the room. Some days, I couldn’t even get him to leave the house.

As time went on, we tried to meet with another pediatric psych doctor for some sort of evaluation. He did a perfunctory evaluation and was very unhelpful, indicating that we were not strict enough as parents and we needed to do better, claiming that there was nothing wrong with our child; there was no need for evaluation or intervention. Looking for a second opinion, we found a local family psychologist who, right away, noticed ADHD symptoms and recommended we get him occupational and physical therapy evaluations. We were able to connect with a wonderful place, several hours away, that did evaluations and recommended therapy for both of our boys. They even caught an eye issue that C had, and sent us for a formal visual therapy evaluation.

After all this time we were finally getting some help. The drawback was that it was quite a distance for us to reach these therapies; about 3.5 hours each way. We would end up staying away from home (including travel days) for three days, every other week. This took a toll on us all. Especially the boys. They would suffer from a “sensory hangover” for days afterwards, which led to less school and activity. Every other week was a wash. It was expensive and time consuming. It was exhausting to me, being the chauffeur so that dad could work.

On top of all that, we realized that C was not using the bathroom as expected. Once it dawned on us, we started keeping track and noticed that he often would go a week to three weeks between bowel movements. At one point, he became so impacted that he couldn’t urinate, requiring a trip in a helicopter to the nearest hospital. Other times, we would end up in a children’s ER (A&E), which was another impressive distance from home.
Because of how far away we lived from advanced medical facilities, we made the decision to uproot and move to a city 300 miles (480km) away. We sacrificed a lot to make that move happen but, if it helped the boys, it would be worth it.

Even in our new home, C’s behavior continued to deteriorate. His anxiety took over. His self-esteem crashed. His GI issues became worse. We found a great pediatrician who gave us referrals to specialists. We started working with a pediatric gastroenterologist (GI doctor). After three hospital stays for bowel cleanouts in a year and a half, we were able to get a referral to a psychologist who performed a neuropsychological evaluation. We were given tentative diagnoses. Tentative doesn’t work for insurance, so we decided to pursue a more official diagnosis.

We were put in touch with a facility that works exclusively with pediatric mental health. After evaluations by a psychiatrist and a psychologist, and much waiting and uncertainty, we finally have results. C has officially been diagnosed with High Functioning Autism, ADHD, Anxiety and Depression; a potent combination of issues. One of the things I suspect got in the way of a true diagnosis for so long was Masking. Masking happens with kids on the spectrum who are aware of their differences and are skilled at hiding them so that they appear normal, helping them avoid social stigma.
Along with this, we realized that our GI doctor was convinced that C’s issues were simply behavioral, with no physiological cause. Since C is very distressed by his bowel issues and tries, without prompting, to do what he needs to do, we decided to get a second opinion. Something that has worried me, is how much medication the previous GI doctor had C taking. Most of the medications are not meant for long-term use due to dependency issues. Were we making things worse?

Our new GI doctor was amazing. He is the head of the pediatric GI department and is a professor at the medical school. Apparently, he doesn’t often take patients but, C’s issues intrigued him (maybe he just felt sorry for us). He took what we already had gone through and moved forward, rather than rehashing everything. He had us take C off all the medication the prior GI doc has prescribed and agreed that there is a good chance that there is something more than simply behavioral withholding going on. He had us meet with a GI psychologist and GI dietitian to see if they could offer any additional advice. Both felt that we have been doing the right things and didn’t offer much in the way of help. Disappointing, but it was worth a shot. Now we are approaching the day that C is to have a small procedure called an Anorectal Manometry. This uses a catheter and a balloon to measure the rectal muscle contractions to see if they are functioning properly. Hopefully this will help us determine how to proceed and let our wonderful nine-year-old boy enjoy a normal life in normal underwear. Until then, all we can do is take it a day at a time.

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