“Gather and Confer: Aur Kitni Baar Part 3”

We skipped the lunchtime sessions and headed back to our hotel room to forage, which consisted of ill gotten gains from the previous night, plus the interesting bits of the boxed lunch provided by Autism NJ. Putting one’s feet up mid conference is so important, I tell you. Not to mention retreating somewhere quiet, and using a clean loo without being harried. 😉

The next talk was one I enjoyed greatly, called “Supporting Individuals with ASD During Healthcare Visits” by Kathleen Freeman, who does double duty as a nurse and also as the mother of an adult son with autism. The dearth of specialized training for healthcare practitioners means that even a simple well-child visit can result in escape, avoidance and meltdowns.

I chose to attend this session because it resonates with me. A is getting so much stronger and faster, and even though I have mastered a lot of techniques on how to get him to obey my verbal instructions rather than having to turn to confrontational and ultimately fruitless bodily maneuvers, it is a work in progress, especially given his growing independent streak and horror of being touched. He also wants to run down every hallway and open every door, then set a pattern and do it repeatedly. So not only are we struggling to get him in the door, we struggle to get him into the exam room, then struggle to get through the exam, and then have drawn all this unwanted scrutiny from other people.

The last time I took him alone for a check up, we both ended up crying, and then I cried all the way home and could barely see while driving. What can you do. Some days are just not superhero material. We hugged and kissed in the driveway, then mopped our sodden faces. I worry about getting older myself and not mastering these skills in time, so I have been practicing since then, and I feel I’ve made progress, yay. On our last two-parent visit, we managed to fade ourselves out and he interacted with the doctor on his own, and lifted his own shirt, endured being touched without bolting, and generally made himself the most awesome person in the room. It’s working for getting A off the bus too. In a parenting experience that is so often defined by nebulous goals and plodding isolation, giving myself a little self encouragement is a must.

Dr Freeman began by talking about how the wait for a developmental evaluation is still too long, and therefore, a lot of younger kids with autism are seen without an existing diagnosis, by healthcare professionals who are themselves not always well trained to work with their sensitivities. This places an undue burden on the parents to manage the healthcare setting on their own, and I can attest to how appallingly bad those early years can be, when we had neither informed parenting strategies nor meaningful input or assistance from the (albeit well meaning) people who treated the kids medically. When A was in the hospital for a lengthy period, it also became his own burden to bear, on some level, even with a diagnosis, and I will always carry the guilt of seeing that change his personality.

I liked the acronym that Dr Freeman has come up with for training healthcare workers: PEARL, which stands for Patience, Empathy (for the circumstances of the family), Anticipate the individualized needs, Refer (co-morbidities such as gastro or sleep disorders, so common in autism), and Listen. This strategy can help counter the fact that when the doctor has the power and control in the room, the expertise of the parent is often pushed aside, and that can render even an initial physical exam impossible. All I can say to that is YES.

Interestingly, when speaking of how to address the avoidant behaviors in the clinical setting, Dr F mentioned the turf wars between the medical and psychology fields. One of the pitfalls inherent in behavioral psych thinking is to dismiss medical issues, and assume that everything can be fixed behaviorally, rather than the other way. It’s just really easy to miss actual health problems when the baseline of a kid’s behavior is to be distressed over minor stuff on an ongoing basis.. This is one of the topics that is a constant in our house—is A screaming because of the usual sensory disturbances and mood swings, or is there something else going on? He is getting better at pointing out body parts that are bothering him, thank the universe, but sometimes it is after hours of crying, and us asking.

Useful tools for easing the doctor visit include bringing communication devices along, and using visual schedules, social stories, books, videos or apps to help anticipate what’s coming, and to change behavior antecedents such as past bad experiences at the doctor’s. Dr Freeman made us all chuckle by declaring that having YouTube in every exam room should just be standard practice because it’s such a great distractor. Also, doing things like dropping off paperwork ahead of time, or waiting in the car till the child’s name is called can avoid the ‘wasting’ of good behavior that can happen when the visit drags out. She also advised using very concrete phrases such as “this will take as long as a Dora cartoon.” And we should never travel without behavior reinforcers such as comfort items, snacks, or even ear muffs to block out noise.

Some further examples of changing antecedents were things like blocking the kid’s view of the procedure, reducing lighting, and avoiding the use of physical restraints, since the child will most likely escalate due to fear, and that might lead to the classic cascade of interventions that causes further future anguish and mistrust. She also suggested multitasking procedures, for example using a sedation procedure for dental work to also collect blood for the primary care doctor’s purposes.

I was fascinated by Dr F seguing into the use of pain meds ahead of time so that shots don’t have to cause pain when they are happening. She also recommended the Buzzy* as an alternative to topical painkillers. This talk is where I learned about the VECTA, which is a sensory and distraction station that I seriously need to have in my life right now, it looks so amazing and fun.

As autistic people get older, they need non-pediatric doctors to also be trained in some behavioral skills, so let us hope that this training is happening, because doctor visits are a given in all our lives.

One thing that stayed with me was how adamant Dr Freeman was about being strong advocates for our autistic children, and that we must push forth and insist on certain best practices becoming default in their medical care. From experience, I have found that it is often less likely that mothers, and people of color, will be automatically granted the right to bring this sort of forthright and managing persona into the medical sphere. But I have also had some very positive and respectful experiences where being forceful was not required, which gives me great hope.

I took away much food for thought from this talk, and have been applying what I absorbed in various settings since then. A definite thumbs up for this one. Stay tuned for one last Autism New Jersey 2017 conference write up!

Radha.

*Information about Buzzy can be found at buzzyhelps.com/for/how-to-use-buzzy/