Everything You Always Wanted to Ask Your Patient’s Parents but were Afraid to…
I’m always impressed with the great questions people ask when I’m doing a talk about the impact autism has on families. Whether it is new med students or pediatric residents in dentistry, the genuine interest and desire to learn gives me hope that these future providers of services to our kids will do their best to make things a bit easier for families.
I usually tell those in attendance that they should feel free to ask me anything and everything, as my skin is pretty thick after all these years. I was recently asked this insightful question by a resident in emergency medicine:
What are some of the worst things that a provider has said/done to you or your child and how did it make you feel?
Always trying to frame things in a more positive light, I usually offer the things that providers have done or said that I’ve found helpful and meaningful but this was the opposite. I was asked to share the ugly stuff that at that time felt like a stab in the heart. I managed to call to mind some examples of “the worst” and it left me thinking more about the value of sharing this type of information with the goal of more directly highlighting what parents find to be unhelpful, perhaps even hurtful.
I took this question to some savvy parents who offered this:
Quotes from Parents on what is Least Helpful
“Does she want a sticker?”
(When trying to do something very difficult such as put a needle in her arm.)
“There’s nothing to be afraid of.”
(When it is something the child is afraid of.)
“This won’t hurt.”
(When it is something that does hurt.)
“You just need to . . . “
(When a simplistic answer is offered to a complex situation and if it were that easy, the parent would have already tried it.)
“You just need to calm down!”
(Often said in a raised voice to a child who is highly dysregulated emotionally.)
“It’s very important that she . . .”
(Often said when trying to get a child to comply with a rule and she clearly isn’t going to comply. Is there another way to do it? Does this step absolutely have to be done?)
“We have to do it this way. It’s the rule.”
(Often safety is cited as the reason for the rule but trying to enforce it creates a more probable safety issue – such as trying to force a child to sit on the exam table. Would it be okay to sit in the chair?)
“Insisting that a child do something (such as putting on a gown), having the parent tell you that it will be a struggle and cause the child to escalate behaviorally; it is/does, and then telling the parent it’s not necessary to do.”
(Listen to parents, believe them and be flexible about the way things are done. Think of the bigger picture in trying to treat the child and what it will take to get it done with the least amount of stress for all.)
“We know that parents of kids with autism have their own issues.”
(Parents have reported hearing and reading this in reports about their children. You can imagine how that makes a parent feel, particularly if they hope to use that report to access services such as at school.)
“Have you thought of using a social story?”
(Social stories are often quite helpful, but not with every child and not in every situation. For example – for a procedure that a social story might actually increase anxiety, such as a blood draw. Seeing a photo of a needle and a vial of blood might make it worse.)
“Being called or feeling treated as ‘just a parent’.”
(Parents are experts on their kids and are pretty accurate in predicting how they will react. Providers are experts in the treatment. A collaboration of the two is a beautiful thing.)
“Being kept waiting.”
(Parents want you to know how much effort it took to get their child to the appointment and how stressful it is for them to wait. With traffic and public transportation, it isn’t always easy to get to an appointment right on time, so parents often arrive early. If you are running late, parents appreciate being told this so they can plan to deal with behavior.)
“Hearing that my child is complex.”
While that might sound helpful, what I hear is that you have no idea how to treat my child.
“Don’t assume I know what is expected of me and my child. You may think you’ve told me, but maybe you haven’t. Or you did tell me before the appointment, but now that we’re here and we’re stressed, I’ve forgotten. Please go over what will happen in the appointment. I don’t like surprises and neither does my child.”
“Using medical jargon that I am not familiar with. Please make an effort to explain things in layman’s terms and if that isn’t possible, teach me what the medical terms mean so I can become familiar with them.”
“Overpromising/being overly confident/optimistic. While I want to be hopeful, I also want a realistic plan. In an effort to be helpful, providers sometimes promote services or treatments without thought to access. I’d rather hear that you don’t have all the answers to my child’s issues. Don’t make promises you can’t keep. Referrals to others might be helpful, but might not be if our insurance doesn’t cover it, there are long waitlists, or it isn’t a good fit for my child. More is not necessarily better.”
In the above instances, parents report feeling that the provider doesn’t understand the child, doesn’t give the parent credit for knowing the child, and that a difficult situation is only being made worse.
Quotes from Parents on what is Most Helpful
“What do you think is going to be the easiest way to do this?” or “Here’s what we need to accomplish. How do you think he will handle it?”
“Let me know if you are running late so I can plan accordingly. Knowing you are 15 minutes behind is better than not knowing at all. I feel as if we have been forgotten if we just wait and wait.”
“And how are YOU doing, mom?” It feels good to know you know I am affected by my child’s challenges or whatever brings me to see you today.
“Are YOU sleeping?” Again, it is validating to know you realize the stress I’m under. It feels good to know you care about me too.
“Validate the efforts I have made for my child. I’m working hard to help him, but often it doesn’t work out. That’s not my fault.”
“Assume the best of me and my child. We are doing our best under very difficult circumstances. It is hard for me to admit I need help and to ask for it. Give me credit for this and meet me where I am.”
Remember, knowing your field of work is a given. Parents expect that you have the knowledge associated with your specialty. You may not, however, have a lot of experience with children with autism. The way patients and families are treated is what makes a provider stand out, what sets you apart from other providers, and makes the difference between an average provider and an outstanding one. You can be someone’s hero by taking the time to really listen and get to know the situation at hand.
We thank the parents who contributed to this blog and hope that providers find their input helpful in working together collaboratively to best serve our kids. If you are a parent or a provider, what else has been helpful or not? Sharing your experiences may help others!