toukokuu 27, 2016

Lectio precursoria: ADHD in the family – The support provided by..

Honoured thesis supervisor, honoured opponent, ladies and gentlemen,

I shall begin with a story told by a 26-year-old woman who participated in my study.

” I was born in 1990. I started in mainstream education in a middle sized town in 1997. I was restless already from the first grade. I could not wait for my turn, I tapped my desk with a pen and waved my feet. It was difficult for me to focus on a given task. I gazed through the window for long times and disturbed others by sending notes and talking.

I was easily distracted by sounds and when others moved around, I lost my temper and got upset. In exams I became anxious because I could not understand the questions and I made a lot of errors because of carelessness. I was not able to tell the time. I also had learning disabilities such as dyslexia and perceptual motor problems. It felt as if my head was a mess.

In secondary school I experienced difficulties in my social relationships. I did not have any friends because I was weird. Even if I was looking at a person speaking, I might not hear a thing he/she was saying. I was late for school on a daily basis and even skipped school. I over focused on one subject because I had to do well and be the best.

The first time I had remedial education was in secondary school because I had failed my math tests three times. When I was in the 9th grade the school set up a smaller class that included me and five boys. None of us were getting our secondary school certificate due to the fact that we had a lot of courses that we had not completed.

Neither my mum nor I were given the right to discuss my situation during my basi education. We asked for the possibility to move to a different class, special education or medical assistance but it was useless. I would have needed special education in some subjects and something to help me with my stress during the lessons. I would also have benefitted from the right to listen to music and do my exams in privacy. Co-operation between my school and home was useless. I would like to add a few swear words here. The only signed document was the permission to transfer me from mainstream education to a smaller class.

I wish people had seen me as a girl with problems not as the girl who is a problem. And it would have been nice if we had discussed how to solve the problems together. It would have been enough if someone had listened to me and respected my thoughts.

In 2010 when I was 20 years old, I was diagnosed with ADHD in a psychiatric outpatient clinic in public health care. My grandfather, father, aunt and two of my elder siblings had similar symptoms. Despite that I am the only one who has been through medical research and is diagnosed with ADHD. After being diagnosed, I immediately received rehabilitation for ten times and an offer to start medication. I started my medication a year after the diagnosis because I was pregnant at that time.

In upper secondary education, I could take my exams and other written tasks orally, I was allowed to work alone and I was also allowed to take exams alone with a supervisor. Thanks to the medical treatment, I was doing better at school and got back my motivation.

I am still on medication. I have benefitted from the diagnosis because my everyday life is a lot smoother and people seem to be more understanding with me. If needed, I can contact the psychiatric unit if I feel that my medication should be altered. I don’t have any other treatment or check-up. I think people should be offered longer rehabilitation and counselling concerning the symptoms and other things that come along. I feel that I received only a little information and was left alone after the rehabilitation.”

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A D H D, four letters that generate different thoughts, feelings and images for all of us. Is your first thought positive or negative? Scatterbrain and always in motion or curious and energetic? Attitude counts and for the person who has ADHD it can be memorable and unforgettable.

During the first centuries when hunting was the only way to survive, energetic, strong and fast human beings were valued and had a better chance to survive. ADHD was a strength in the individual. As times have changed the same features can be seen as abnormal, restrictive and even negative in today’s society; as a disorder.

ADHD has been studied in the medical, social and educational sciences for a long time. Researchers still disagree on the origins of ADHD although medicine dominates the area of research. Worldwide approximately 5% of people suffer from ADHD. This means that there is at least one person who has ADHD in every day care group, classroom and work place. These people need supportive measures, understanding and procedures based on their strengths.

The symptom seems to be familial and it is affected by genetics, prenatal factors, childhood interaction and environment. In this study ADHD was also strongly familial. Due to this, support should be offered to the whole family instead of just one person diagnosed with ADHD.

The aim of this study is to describe the experiences of families with family members who have ADHD and are in need of support from different bodies such as health, educational and social services and their experiences of the support provided by these different bodies. These three bodies were chosen due to the national early childhood education policies that require co-operation between health, educational and social services. This study represents the thoughts of 208 Finnish families that live with ADHD on a daily basis. The experiences of families who have received multidisciplinary support are central when such support is planned and provided.

Different service systems are conducted by legislation that usually takes visible physical disabilities into account. ADHD is a so-called invisible disability. This means that there is no visual evidence that a person has been diagnosed but he/she can function differently due to cerebral causes. People who have invisible disabilities are in an unequal position in Finnish legislation compared to people with visible disabilities although cerebral symptoms can cause an equal amount of malfunction. Disability that causes malfunction amongst people who have ADHD is often unrecognized by professionals. Therefore, there is not enough support provided.

Along with the change in the Basic Education Act in 2011 there was a strategy of special education provided by Ministry of Education and Science that recognised inclusive thinking, early support and increasing integration of special education pupils into mainstream education classes. A pupil that has special needs has the right to get remedial education and special education without a diagnosis. Therefore, there should not be any need for ADHD diagnosis at school in order to get support.

The Government highlights in the 2015 Health programme that children at risk of social exclusion and their families should get support as part of the general political decisions concerning wellbeing. All Finns have the right to access equally good services of preventing and treating sickness as well as disability. The services should meet the needs of the customer. Everyone should have the right to get equal, quality and adequate services so that regional or socio-economic status such as education does not prevent anyone getting those services.

The Ministry of Social Affairs and Health emphasizes in their report, Social work as a tool of welfare policy 2015 – an action programme, that a starting point for social work in the future is to strengthen the resources of the most disadvantaged people and people in need of most support, and to prevent social problems from arising. Individual interventions must be enhanced and it must be understood that a person’s background may both prevent as well as support the rehabilitation process. Social work can be the department that has an overall view of the customers, participants and communities and the services needed.

The latest pondering in the society has been about decreasing youth unemployment, preventing young people from dropping out of school and working life and decreasing problems with life management as well as social exclusion. In a report about services needed by young people published by Youth research centre in 2015, it became clear that services do not meet the needs of young people who have a lower ability to function and can not work or study. Young people who are absent from school or work are sicker than other young people their age. Therefore, more resources should be allocated to their wellbeing.

Families describe the services provided by different sectors as very bureaucratic, shattered and regionally diverge. Families don’t have equal chances of getting the needed services at state level even though the services are statutory. It is a coincidence if a family meets a professional that identifies the symptoms of ADHD and the need for multidisciplinary supportive services. The service system does not observe the need for support for the whole family and no individual supportive measures are provided. The co-operation of the different bodies is also very minimal.

People who have ADHD and also have massive functional impairments are not able to seek supportive measures and certainly can not wait for a long time to get service without the situation deteriorating. For example, the Education department should take into account the fact that there can be very clever pupils amongst the ones who suffer from Attention Deficit Hyperactivity Disorder. These pupils should get support despite their cognitive capacity because they can experience difficulties in co-ordination skills or social relationships. The cognitive capacity does not represent the person’s ability to function.

This study also verifies the fact that becoming socially excluded is a problem we should worry about. The difficult situations of the families were demonstrated in the research material in that every third family participating in this study included a socially excluded person or someone at risk of social exclusion. Socially excluded people report low self-esteem and the sense of being less valuable and even incompetent to function in the surrounding society. The participants stated that social exclusion is a vicious circle from which escape is difficult when no support is available.

Docent Tanja Vehkakoski, I respectfully beg you, as the opponent duly appointed by the Faculty of Behavioural Science for my disputation, to present your criticism of my doctoral dissertation.