Dear medical professionals everywhere,
My name is Jennie and I have four great kids. Three of our four have Autism Spectrum Disorder (ASD). Two of our boys are on the “high functioning” end of ASD but our oldest child also has autism, a mild intellectual disability, myopia, motor issues and Addison’s Disease, which makes the challenges greater.
Firstly, I’d like to say a big “Thank you” to all of you who help keep my daughter alive and healthy. Even when, a couple of years ago, you had no idea why her CRP levels were sky-high and she was dangerously tachycardic, you helped her pull through.
There’s plenty of you to thank. I’ve seen quite a lot of health professionals since she was born, from doctors and nurses, specialists in kidney health, ENTs, gastroenterologist, dermatologists, allergy specialists, gynaecologists and endocrinologists. Not forgetting optometrists, ophthalmologists, physiotherapists, occupational therapists, speech therapists and psychologists. Our local GPs – bless them – often. Paediatricians. Anaesthetists. Pathology nurses, x-ray, ultrasound and MRI technicians. Paramedics – yes, she’s scored a couple of trips in an ambulance. How exciting – not. Dentists and orthodontists. Even dietitians. I’m sure I’m leaving someone out, but I think you get the message. We’ve sat in your waiting rooms over the past 16 years and we thank you.
Secondly, I’d like to say a special “Thank you” to all of you who take the time to listen, truly listen. Thank you for the time you have spent answering my questions, giving detailed explanations and then explaining the explanations. I appreciate that. It shows your respect for my concerns and my complex role as the mother of a special needs child. You’re also respecting her as a person, not simply a cluster of symptoms.
So here is a few tips. I hope they’ll help you help us, and make your life easier too.
I’m an important resource. Use me.
I’m my daughter’s interpreter. Although she is verbal, she doesn’t always communicate well. In fact, sometimes she actually says the opposite of what she knows to be true. That could be dangerously misleading if you didn’t know her better. I think it’s like a game for her. Can you believe, after being with her 24/7 for this long, I’m still working it out? Even so, I understand her better than anyone else. So I have to be her translator – interpreting both her spoken and her body language for you.
I’m her personal anthropologist. I seek to understand what drives her behaviour, what motivates her responses. Being aware of these will help you find the most effective way to deliver your skillful service. I am best placed to find the keys to help unlock whatever doors she might be closing to you.
I’m her advocate. She has neither the skills nor the understanding to speak for herself or speak up for herself. Believe me, being an advocate is not an easy task. I have no medical background. Questioning health professionals, especially doctors, seems counter-cultural – almost rude. However, my probing, questioning and refusal to accept doctors’ reasons for her declining appetite and weight loss after an initial hospitalisation a few years ago eventually saw us back at the hospital. It was after listening to my concerns with an open mind that the emergency doctor offered to readmit her and, as a result, saved her life.
I’m also her health monitor. I diagnosed her Addison’s before you did. It’s not boasting. That night, after her readmission and my daughter profoundly not herself, I sat outside her room with too many questions in my head for sleep. I searched and searched on Google until late. The following day I was armed with information and focused questions to ask the doctors, like: “Does she have Addison’s? Because all the symptoms seem to fit.”
Sometimes people only see what they’re expecting. Perhaps this is why she wasn’t diagnosed earlier. It turns out that the ‘tan’ that medical staff so admired on her prior hospital stay was a major indication of her adrenal gland not working. My overnight Google vigil helped the doctors find the Addison’s diagnosis.
With Addison’s, my daughter has a lifelong, and potentially life-threatening condition which needs careful management. This means that you’ll be seeing a lot of us in the years ahead.
What to expect from your patient who’s been waiting a long time
I get it. It’s hard to stick to scheduled times for appointments. Often we have to wait past the appointed time before we get to see a doctor. Sometimes we’ve been the reason that others have had to wait. But she has autism, and wants things to be ‘just so’. She gets anxious when things don’t follow the set plan. So if we’ve had to wait a bit – or a lot – before we get to see you, please understand that she might be unsettled, and not as able to co-operate as quickly or as fully as we’d like and you expect.
Here’s an example. Once, our specialist finally saw us at 9.35 when the appointment was for 8.15. I try to schedule early appointments to minimise the possibility of waiting. Now, my daughter was absolutely past being able to comply with any of the testing we had booked to do. She wasn’t being naughty. This testing is hard for her at any time. That day, it was impossible. It was wasted money and time for us, and very stressful for my daughter.
Likewise, the allergy specialist who saw her as a pre-schooler. My daughter had been waiting for over an hour. You became cross with her, and me, because she wriggled. We would have appreciated sympathy instead of criticism. What’s more, you were pricking her back all over the place and no-one likes that, especially when they’re a young child with sensory issues. Your lack of kindness and understanding cost you a return visit from me and custom from my friends seeking specialist allergy advice.
Your understanding (and adjustments to the waiting area if you can) would help us and you
I’m sure you’re aware that change can be challenging, even overwhelming, for people with ASD. So while waiting rooms have similarities, they’re all different. They have different layouts, different lighting, different textures to their chairs, different toys and magazines. Some are quiet, some are noisy. My daughter makes an effort to synthesise all this but it’s tiring. She notices everything and it strains her brain. For us, these are relatively minor things, and like white noise, we block them out. She doesn’t. So not only is the waiting itself tiring, so is all the extra processing that’s happening.
I know health budgets are tight. I’m not asking for a special “quiet room” – although that would be great! Just for some extra understanding if my daughter doesn’t settle well at her consultation after having to wait.
Support my daughter in her pathway to independence
Although my daughter will always need someone to be there for her, I’m trying to develop my daughter’s independence as much as possible. This includes her taking ownership of things like introducing herself at the doctors, asking questions and answering them. Thank you to those of you who address yourself first to the patient – my daughter – and then to me. Thank you to those of you who wait for her answers, even when I need to elicit them from her. You’re teaching her that there are people other than her immediate family and her teachers, who want her input and acknowledge her right to be involved in her health care.
If she wants to go into theatre without me, that’s great. I’ll probably worry the whole time, but how wonderful that she doesn’t feel the need for mum at her side. After all, she is nearly 17. And if she wriggles, or finds things difficult – or you find things difficult – my mobile number’s on a form close to hand. I’ll be no further away than the nearest Zoukis!
Ask questions…and ask again
I ask lots of questions. I do this to help me understand her condition, how I can help manage it and to make sure that I give you all the information you need to help you manage it. Something I think is irrelevant might actually be vitally important in the overall picture.
Yes – I make lots of notes. I’m not keeping tabs on you. This is information which helps me help other specialists who mightn’t have quick access to this information. It helps me understand her different medical and mental challenges. It helps me help her – and you.
To the few who try to give out as little information as possible – yes, I know there might be time constraints, but still… A stitch in time…
Also, please don’t make assumptions about my level of understanding. Whether or not we have a string of degrees to our name doesn’t mean we aren’t interested in or able to comprehend what’s going on with our children. After all, we are often paying handsomely for your time. And our questions might just prompt you to think outside the square.
A little extra patience and flexibility will make a big difference
My daughter has now had multiple surgeries in multiple hospitals, multiple cannulas inserted, her blood pressure taken scores of times and her blood tested regularly. Nevertheless, there is always something different to challenge her. A new person, an unfamiliar room, a different time of day. Sometimes there are things making her anxious that I’m not aware of, or that I’ve discounted. Please be patient with her. The unfamiliar can nest within the familiar, causing stress and anxiety. This then affects how much she will cooperate.
I’m sorry she still doesn’t lie still for her blood pressure tests. It’s not for want of practice. And yes, her shirt needs to be clear of the wrap-around strap. It’s just one of the ways her autism manifests itself. However, she can now lie back in the dentist’s chair without my needing to help hold her flat. We’re still working on her opening her mouth wider – that’s proving a bit harder but with practice, things do change.
Inserting a cannula will always require extra patience and care. No-one likes the procedure and she’s particularly sensitive. So please use numbing cream first – always. It should be automatically given. And please make sure the cannula is firmly taped down. It’s awful when a cannula has to be reinserted because poor bandaging and her wriggling have worked it loose.
Sometimes she will say “Yes” to something and then change her mind. Like having sedation under gas at her last procedure. She wanted it, but found it hard to handle, so we went with Option B. Please be understanding and flexible. We all change our minds sometimes.
Understand and forgive the behaviour
Please don’t take personally rudeness from someone with ASD. It’s usually a manifestation of extreme anxiety. I’m still mortified at the way one of my children recently spoke to one of our GPs. But I knew this child was terribly anxious. It was plain to see in his body language: the tapping hand, the jiggling leg, the tense facial muscles. This is a child who hid in the toilets to avoid a blood test and who needed to be bribed into having his HPV vaccinations. We go to the doctor because something’s wrong – or we suspect it is. That can be hard to handle for people who need to feel in control of their situation, and especially for someone with ASD, like my child.
And just to finish up…
I’m sure you have heard, if you’ve met one person with autism, you’ve met one person with autism. Please don’t assume that each person you see with autism will have the same challenges. It’s incumbent on all of us, and especially medical professionals, to find ways to understand and communicate more effectively.
We parents are here to work with you as a team. So please, work with us so we can achieve what we all want in the end: the best for our children.