University of Silesia in Katowice

Self-stigmatisation of parents with children on the autism spectrum.

|Katarzyna Stołpiec|

The self-stigmatisation of families with children on the autism spectrum is a narrow and rarely undertaken topic for psychologists and educators. However, it is addressed by Anna Pyszkowska from the Institute of Psychology of the University of Silesia in Katowice, who works with families of children on the autism spectrum on a daily basis as a psychotherapist in the Konkret Psychotherapy Centre in Gliwice and the Spectrum Liberi Foundation in Chorzów.

Self-stigmatisation is an issue which sits somewhere in between psychology and sociology. “It involves personal acceptance of negative public opinion as truth and maintaining the feeling of alienation, being inferior to others, being “labelled” with some stigma not accepted by the environment in which, according to subjective assumptions, everyone lives properly,” explains Anna Pyszkowska. “Although the autism spectrum itself does not make a person a victim or an invalid, because it is not a disease but a neurodevelopmental disorder, there is a global perception that the life of such a person is bound to be unsuccessful. The psychological problems of families with a person on the spectrum stem from critical public opinion, which makes them afraid to admit their situation and causes difficulties with self-acceptance.”

An appropriate therapy for people on the autism spectrum has a positive impact on their social functioning. Even though such persons are able to lead successful lives, satisfy the requirements of work and education, and start their own families and raise children, they are perceived by society as problematic. “This is what my research is all about,” explains Anna Pyszkowska. “I study the level of self-stigmatisation among Polish parents of children on the spectrum. Such research was never conducted. The focus was on people on the spectrum, when at the same time their parents or caregivers also needed support due to permanent stress and psychological strain. Together with a student team I lead at the Institute of Psychology of the University of Silesia, we are trying to develop results and statistics that will give us a clear idea of how many families are affected by social stigma. The next step in the research will be to look at the psychological variables and resources in order to see whether they are able to distance parents of children on the spectrum from their thoughts of denial and shake off the label of a dysfunctional family.”

Anna Pyszkowska, when asked about the reasons for the psychological problems of these parents, mentions the cultural code that is ingrained in the mentality of Polish people. “Taking time for oneself is often regarded as neglecting a child in need. The archetype of a Polish mother, suffering nobly or feeling the need to sacrifice herself leads to an attitude of complete resignation from oneself, and this is no way to live. Constantly caring for the child, with no hobbies, leisure or holidays, the burdens and stresses experienced every day increase to such an extent that they are difficult to endure. Thus arise the parents’ emotional outbursts, aggressive behaviour, harshness etc. No wonder these people are extremely burnt out. I also work as a psychotherapist for children on the spectrum. In subsequent sessions, I often ask about the wellbeing of the parents and their psychological state, in order to give them the necessary support and understanding, which is unfortunately in very short supply.”

“Cognitive fusion and psychopathological symptoms are  the consequences resulting from self-stigmatisation. These elements constitute the second stage of our research. The first stage was to investigate the level of self-stigmatisation of parents with children on the spectrum. Now we move on to cognitive fusion. It involves identifying with negative opinions about oneself or the whole world, “fusing” with one’s thoughts, which do not allow any other perspective to be taken into account. It’s dangerous, because it shuts off any thinking that isn’t purely negative. Our aim is to find out if a mechanism for changing this kind of thinking can result in improved wellbeing. We use a psychological mechanism called self-compassion, which states that accepting your own suffering and taking care of your own needs is what helps you cope with difficulties. Research shows that self-compassion helps broaden the perspective that persons with a close relationship to the spectrum, a direct or indirect one, are accepted, are not subject to exclusion, are an integral part of society, have the same right to a normal and good life as others, and have the right to their own time and their own hobbies.”

The psychotherapist states that psychopathological symptoms among parents mainly include depression and anxiety, including anticipatory anxiety and stress. “Over time, parents worry about what will happen to their child when they pass away, or how they will cope when they reach adulthood. All of these elements can be alleviated with constant psychological therapy. This is another thing, which I want to promote in the community of families of people on the autism spectrum.”

Thanks to the “Freedom of research” call for proposals, Anna Pyszkowska and her team have the opportunity to conduct a longitudinal scientific research under which she will be able to investigate the effectiveness and usefulness of free psychological help oriented towards parents of persons on the autism spectrum. In accordance with the current European standard, participation will be financially rewarded with PLN 50. “We want to systematically provide opportunities to help families in need. “Freedom of research” allowed us not only to organise an interesting event as part of the project, but also to reward people for the time they spend filling in sets of questionnaires. It is fair and necessary, I think. I hope that our efforts will bring us the expected results, both in thorough academic research and in effective psychotherapeutic therapies, because we plan to publish the obtained results in a reputable scientific journal, so that as many people as possible will be able to benefit from the results.”