The phrase is usually - A problem never comes alone! But what is the use of talking about problems in this way? They exist. And that is a fact. That's why it's better to look at them in a different way. Because it's not only the problems that come one after the other. Good things come too. And life has a lot of good things.
This is the message that Leandro (fictitious name) sent me after I answered his other message, in which he said he couldn't come to the consultation because he'd had some not so good news when he went for a medical consultation.
Leandro is 18 years old. His birthday is in six months, on the 14th of October. This year would be time to enter university. Leandro wants to go into journalism. But this project has been postponed.
When he was 8 years old his parents took him for a Neuropediatric consultation. The school was having some complaints about Leandro's behaviour. And the usual recommendations his parents were giving him didn't seem to be working as well as before. Leandro had also changed schools, due to moving house. His parents thought that the difficulties were due to all these changes. And they hadn't yet realised that another change was coming. The doctor diagnosed Autism Spectrum Disorder.
My parents were more shaken than I was, Leandro said. My father brought his hands to his face and my mother cried, he continued. I didn't know what that name was, but the doctor seemed calm speaking those words as he looked at me, he said. And that seemed to be a good thing. Also, what the doctor did was explain what was happening to me at school and also at home. And that seemed to be a good thing. Not least because he seemed to know what he was talking about. I even wondered how he could have guessed all that.
I learned that there are many things in my life, he says. It's not surprising, even though I've tried to keep my life basically unchanged, he continues. It's okay. I keep striving for a lot of my days to remain the same, and life takes care of randomising things, he says. It's a game of patience, he laughs.
Every day there is something new in my life, he says. Someone who says something I didn't expect. Someone who does something I didn't want to happen. What I started doing very early on was a dictionary of these novelties, he adds. I reserved a special chapter for undesirable things and things to avoid. I even called it "undesirable things and things to avoid", he concludes.
When the doctor told me that I had cancer, I took it as a novelty, he says. I didn't understand at that moment what kind of novelty it would be. But after the doctor told me how serious it was, I didn't hesitate to put it under undesirable things to avoid, she says. Did it shake me? he asks. I don't think so. It's just another thing among the million other things that have happened in my life. This one could take my life, that's true. But so does the fact that I've been saved three times from being hit by a car in a zebra crossing. And that's not why I had any questions about zebra crossings. Now with cancer it's the same. My doctor tells me I have to do the treatments and I'm going to do them. I have explained to him how I like to do things and he seems to have understood, he concludes.
There are many things that happen simultaneously with autism. There is a lot of talk about psychiatric comorbidities. As well as other issues that occur more frequently. But there are also many other situations that occur with equal frequency when we compare them to neurotypical people. One of these things is the rates of cancer which are very similar in autistic and non-autistic people. However, it's estimated that autistic people are twice as likely to die from cancer compared to non-autistic people. Why is that? Some people think about inequality in cancer care. And how oncology health professionals should be aware of the challenges in caring for autistic people.
Firstly, oncology teams need to be particularly aware of autistic children, adolescents and adults, as their unique physiological and neuropsychological profiles may cause difficulties in their adherence/compliance with clinical strategies and 'standard of care' in place for other patients. Cancer patients have to cognitively and emotionally understand the challenges of a serious illness, face invasive investigations and treatments while dealing with the struggles unique to autism. Therefore, oncology healthcare professionals must be aware that behavioural and communication manifestations can pose a particularly significant threat to optimal care in this very heterogeneous population. For example, cognitive inflexibility is a key difficulty that can manifest itself in the context of cancer care, including in autistic people. In this context, oncology teams unaware of the signs of autism may stigmatise patients as difficult or poor compliance patients. Overall, if left unaddressed, the specific characteristics of communication and habitual behaviour in autism risk destructively affecting the operations of clinical services and leading to unforeseen morbidity and mortality.
Secondly, to meet the needs of autistic people with cancer, clinicians must collaborate imperatively and effectively with parents/families and other carers with the aim of constantly adapting communication and monitoring/managing the clinical environment. It cannot be emphasised enough that working in partnership with parents/carers is of fundamental importance in prioritising and coordinating interventions and treatments, and providing appropriate supportive care to the patient and their family/caregivers. This collaboration should be regularly reassessed for effectiveness in assessing patient and carer reported symptoms and problems.
Third, regarding communication, since information is mostly provided verbally, health professionals should use appropriate strategies and tools adjusted to the patient's characteristics to facilitate the transmission and understanding of information.
Fourthly, it is essential to establish an individualised global care plan and specific protocols before the start of any examination, treatment or procedure can help the health team to anticipate possible disorders. The development of these strategies should always involve the patient, the family and/or primary caregivers and, as far as possible, the expertise of autism specialists and autistic people.
Fifth, clinical environments are rarely adapted to an individual sensory profile, and patients may associate cancer care with a particularly hostile experience. This is even more difficult in situations involving young children, where families play a central role as an interface. Taking the time to gradually expose the patient to the various instruments used during therapy (e.g., monitoring equipment, needles, bandages) and their sensory exploration may represent a way to increase the chances of optimal collaboration.
Sixth, oncology health professionals should be aware that their patients, regardless of age, may have undiagnosed autism and be without a definitive neurodevelopmental diagnosis at the time of the discovery of their neoplasm. In fact, although autism can be diagnosed as early as age 2, most children remain unidentified until after age 4 (age 18). This is particularly relevant for the paediatric oncologist, as this is an age when cancer diagnoses peak.
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