Greetings Earthlings! 🙂
This week I’d like to discuss a little more unusual- the participation of autists in clinical research and trials.
Now before we get into this post, I’d like to preface things by reiterating my stance from previous posts that autism is not something to be “cured”, but that being said, pharmaceutical interventions can be useful in the treatment of conditions that are co-morbid with autism such as OCD, bipolar disorder, ADHD, GI issues etc., not to mention every day illness, so research participation can be highly beneficial for autists.
So what exactly is clinical research and why do we need it?
In a nutshell, clinical research is a branch of medicine that determines the safety and efficacy of treatments intended for use in humans. It differs from lab based research in that human volunteers are involved to advance our knowledge of health and medicine- most of the studies that I refer to in my posts would be classified under clinical research. Research is split into two branches:
- Observational studies -where groups are observed/monitored to gather health data
- Clinical trials/interventional studies– where a treatment/drug is administered to a group of volunteers to assess its safety and efficacy. Depending on the trial phase the volunteers may be healthy or target patients for the drug/treatment
Human studies are the only way to truly determine drug safety and efficacy prior to marketing, so clinical research is essential to the advancement of medicine. Diversity in clinical investigations is particularly important as it allows us to better predict potential patient outcomes after treatment roll out. Historically speaking, trials were not particularly diverse and didn’t always cater to target patients. Many trials were subject to gender bias with males dominating the data- there were even breast and uterine cancer studies conducted exclusively on males! We now understand the importance of enrolling biologically diverse groups, hence autists participation in clinical research could be greatly beneficial.
But clinical research can be daunting for anxious autists, not just at the prospect of poor outcomes and side effects, but there are many barriers that may make participation difficult for an autist. There are often a lot of sensory challenges in the clinical setting with bright fluorescent lights, strong smells from medicines and cleaning products, alarms and noises from medical devices etc. which would need to be addressed by clinical staff when enrolling autists in studies. Co-morbid ADHD can also be an issue as autists may find it difficult to pay attention during visits and may become distracted by their surroundings making it difficult to collect data. Similarly ADHD can also impact patients motivation and interest in the trial which can make it tougher to get them to stick with it. Autists also often have difficulty with taking medicines on a sensory level so non-compliance with any treatment regimes will not generate usable data for investigators.
Many of these barriers can be overcome through environmental modifications, frequent breaks and adequate educational and emotional support during research studies. If clinicians and autism advocates work together to make research more accessible for autists, who knows what good may come in future clinical investigations!
Hope you enjoyed this post dear Earthlings!
Have a lovely weekend! 🙂
Aoife
A Is For Aoife Not Autism 