Do you think it's normal that my GP said I was joking when I told him I suspected I was on the autism spectrum? says Cláudia (fictitious name). Every time I think I need to go to a doctor's appointment I get anxious! says Carlos (fictitious name). I've been to several doctors with different specialities and I always find it very difficult. And most of the time I end up not going back! he adds.
These two sentences may well illustrate what many autistic people feel in relation to the response they receive in medical appointments, but also in psychological and other specialities. And no, I am not saying that the health and technical professionals in question are not adequate and capable professionals. I have no competence to evaluate them. But the point is that we can all reflect on what seems to be the need for adequate training of health professionals to be able to better receive autistic people in their consultations, whatever their speciality.
And before people start saying that doctors, psychologists and other technicians have been receiving training on autism in their higher education courses for a long time, be it undergraduate, masters, postgraduate or other. It is better to say that this is not a new theme and that the scientific literature in the area has been studying it. And it has even collected valid information from doctors, psychologists and other technicians. And they themselves refer to this need to have more and better training to understand and interact with autistic people in consultations. As such, adding this information to the fact that there are also scientific studies which have demonstrated this same need from the autistic people's point of view. It seems plausible to reflect these needs in a practical change.
For instance, in what concerns the training psychologists receive in their undergraduate and master degree courses on autism, it is based very much on what is present in diagnostic manuals. There will probably be some care in this or that Higher Education Institution with a Psychology degree. However, even though the information on autism in the syllabus is scarce in relation to the diverse and complex reality known to be contained in the autism spectrum. It is not by chance that the formal assessment with the most referenced instruments in autism (ADI-R and ADOS-2) are training courses apart from the bachelor and master degrees. Besides knowing that the intervention process itself, methodologies and conceptualisation of psychotherapeutic intervention in autism throughout life is itself quite complex and different from what the existing standard intervention programmes are.
We will know that people with disabilities generally have less access to necessary medical care than people without this condition. Barriers to appropriate care include patient fear and uncooperative behaviour during routine medical procedures and inadequate preparation of medical professionals to treat this population. Just as you also know that people with neurodevelopmental conditions generally experience poorer health (e.g., higher levels of obesity, emergency room visits, etc.) than people without these conditions.
In turn, physicians report that they prescribe fewer preventive care services (i.e., blood counts, blood pressure checks, cholestrol monetization, mammograms, etc.) and provide less counseling on risk behaviors (e.g., smoking, inactivity, etc.).
What can be described as uncooperative behaviours for people with neurodevelopmental diagnoses during medical consultations are a barrier to receiving appropriate medical consultations and respectively medical care. People with neurodevelopmental diagnoses may present behaviours due to the unfamiliarity of people in the medical environment or due to past exposure to aversive medical procedures (e.g., physical examinations, blood draws) that have led to
a learned fear of medical stimuli
Uncooperative behaviour can take a variety of forms, including crying, protesting, refusing to follow instructions, running away, and so on. In some cases, non-cooperation may be due to poor receptive language skills (i.e., difficulty complying with understandable instructions to open the mouth or to breathe when checking lung function) . Uncooperative behaviour may lead to the use of
unnecessary procedures, such as immobilisation, sedation, or anaesthesia, which have been thought to be unnecessary, when the situation could be dealt with in a different way. But that this requires clinicians to have adequate knowledge of these situations
Research suggests that most medical professionals do not have the knowledge and training to promote comfort and cooperation for people with neurodevelopmental diagnoses. As a result, medical professionals may be unwilling to implement accommodations for these people. And as such, professionals may perceive and make incorrect assumptions about the skills of these patients of theirs. In studies that address medical professionals on this topic, they note that they report lack of time, familiarity with these conditions, or access to community resources, difficulties with communication, lack of training or experience with this population. And that all of this ultimately causes barriers to health care delivery.
Therefore, one way to reduce health inequity for people with these diagnoses is to provide more specialized training for medical students and medical professionals. Given that current medical education for working with patients with neurodevelopmental diagnoses is limited to only a few hours of classroom-based, diadactic instruction. And research suggests that this type of training is ineffective in preparing caregivers and professionals to work with this population. It will be important that this training can encompass the autism spectrum in a more diverse way. But it can also be based on behavioural skills training that helps health professionals to implement behaviour management strategies and that the training can use techniques such as instruction, modelling and role-play with feedback.
We all need to get out of this place where we are failing to build an adequate mental health response. It will be critical that groups representing people with a neuropsychiatric diagnosis can continue to advocate for more and better health practices and access to care. It will be fundamental that training schools for health professionals can look at the reality and the evolution of knowledge of clinical situations and reflect this in the training given to their students, but also to professionals already in clinical practice. And so, it is fundamental that the representative orders of the professional classes make efforts so that these and other training courses can continue to take place. And to think that closer communication between everyone can develop more and better healthcare and welfare services.
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