What is this research about
You are not as fast as you used to be, you become more emotional, and sometimes you have trouble adapting to a changing environment. In other words, you are aging.
These cognitive and emotional changes are related to changes in your brain and to the demands of your environment. What if adapting to changes was already difficult when you were young? What happens during aging if your brain was functioning differently at a young age? Will everything deteriorate faster, or do efficient compensatory mechanisms develop? Suppose you consider yourself neurodiverse or have an autism diagnosis which is associated with early neurodevelopmental atypicalities in cognitive mechanisms that are known to deteriorate with aging. What happens with these cognitive mechanisms when common aging-effects kick in? How is this impact different or the same for different people? These are the overarching questions of the current project.
The goal of this project is to understand what happens on a cognitive level when people with autism age. Moreover we want to know how aging and mental health relate to one another when one is autistic and/or has an ADHD diagnosis. We ran a series of studies to test the main assumption that aging in people with an autism or an ADHD diagnosis follows a different trajectory (i.e., a steeper decrease) than in people without autism. So far we did not observe a pattern of findings that is suggestive of a steeper decrease. On a cognitive level we hardly observed differences between those with and without an autism diagnosis, but the question is whether we can replicate these findings. Moreover, we want to figure out whether autistic people might differ from non-autistic people in how the solve specific cognitive tasks. The cognitive strategies people use might change when aging or might be differently affected when aging.
Therefore, in the current study we will focus on a) differences in cognitive strategies (to unravel how do people do a task); b) subgroup detection (to unravel heterogeneity) and c) camouflaging and mental health. This means that next to a series of questionnaires, participants are interviewed and will conduct a series of cognitive tests.
- People with a diagnosis of autism between 25 and 40 years old OR over 65 years of age.
- Non-autistic people (also without autistic close family members) between 25 and 40 years old OR over 65 years of age.
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Useful information for participating
In our research we mainly focus on cognition. Cognition refers to the ability of learning and understanding. There are a wide range of cognitive processes such as learning, perception, remembering, thinking, interpretating, believing, and problems solving. To put it differently, cognitive processes are all processes which are of importance to process information. This information can be everything, so emotions, facts, movements. So the term cognition is rather broad.
We study how and if the cognitive processess of autistic people and/or people with an ADHD diagnosis differs from people without such a diagnosis. We focus on how people concentrate (attention), how people can adjust their behavior in response to changes in the environment (executive functioning/cognitive control: stop, change, and start behavior), how people processes social information, and how people learn new information.
In order to study this we use all kinds of tests. Often these tests are tasks on a computer, but sometimes we also use so called paper and pencil tasks. For the majority of computer tasks it is of importance to respond as accurate and fast as soon as information appears on a screen, but we also use tasks where one has to memorize words or pictures or to draw or build something.
Cognitive research does not encompass physical research and there are no risks associated with cognitive research. However, there will be tasks that might be difficult for you and some might be (too) easy. This is for everyone who will be tested the case as this is how these tasks are designed. So when you find a specific tasks hard this does not imply that this is directly related to having an autism or ADHD diagnosis. Every person differs in their cognitive strengths and weaknesses. This is what we call a cognitive profile. By adjusting the difficulty of the tasks we can determine what is someones personal cognitive limit. This type of information is for example useful when designing an intervention or when you give advice regarding school.
In the Netherlands and the rest of Europe there are many rules and regulations to guarantee the privacy of children, adults and parents who take part in research. This means that all data that we collect will be handled strictly confidential and processed anonymously. This is accomplished by giving each participant a so called participant number. The research data will be coupled to this participant number and uncoupled from any personal data, both during and after participation. In this way, it is not possible to track down which research data belong to which participants.
The results of our research will be published in international (and sometimes national) scientific papers.
When you fill in a (contact) form on the website, or send us an e-mail, the data you have sent us will be stored as long as is necessary to properly answer or process. The duration depends on the type of form or the content of your e-mail.
If you decide to participate in our research your information will be transferred to our UvA environment as discussed previously. You will only participate when you have provided us your written informed consent (see “permission”). This also implies that Dutch law on the duration of storage of scientific data will go into effect. The storage duration depends partly on the type of research you are participating in. Upon participation you will be send project specific information (including information about data retention) and will be asked to consent to the processing of your personal data within the project.
For every research project you will first receive additional information on the research you might participate in. It is important to read this information thoroughly. If you have any questions please do not hesitate to contact us.
When you have fully understood the content and still wish to participate, we will ask you to sign a so called informed consent. By signing this, you indicate that you have been properly informed about the content of the research, that you know your data will be processed anonymously, and that you know you can opt out of participation at any time. Signing this form lets us know that you are willing to voluntarily participate in our research.
If not you, but your child is participating in research, it is important that your child signs the informed consent too when they are 16 years of age or above. This means that both you and your child will have to consent to participation in our research. For children less than 12 years of age, you, as a parent or guardian, can indicate if they are allowed to participate or not.
During research all participants that partake in that research are insured via the UvA (University of Amsterdam). If you have any questions about your rights as a participant or about the insurance, you can contact us. Usually, an additional insurance is not needed for the type of research that our team does. If additional insurance is needed, this will always be indicated clearly in the information letter. Whether additional insurance is needed is judged by an ethics review board (ERB).
Upon completion of the entire research project, we will let you know what we have discovered by our research. This short report on our findings will often be sent to you quite some time after your participation. This is because it takes a long time to collect all data and find out exactly what these data tell us. We will also (partially) reimburse your travel and parking costs. For some of our research projects you will receive an additional monetary compensation. If this is the case, this will be indicated in the information letter.
Every child that participates in our research will receive a small gift as a thank you for their participation. In some of our research projects they can also win additional surprise gifts.
Upon completion of the entire research project, we will let you know what we discovered by our research. This short report on our findings will often be sent to you quite some time after your (child’s) participation. This is because it takes a long time to collect all data and find out exactly what these data tell us. We will also (partially) reimburse your travel and parking costs.