A Mother’s and Daughter’s Perspective
Autism has been a part of our lives since my daughter, Henna, was diagnosed. With Henna living at home, I had to arrange my work in such a way that I could stay home during the day. For that, night work was the best alternative. Henna’s brother has also had to take part in Henna’s care. That is, he had to be responsible for his sister when I was at work.
Rehabilitation and different communication methods have, of course, shaped our life. When Henna was moved into a group home and I had time for my own affairs, it felt very strange at first. I must admit that my life seemed somehow strange when that autistic daughter wasn’t at home, as for a long time I had to take her needs into account in living my own life.
Autism is defined as a neurological illness. Maybe some people still have a different understanding, but so much has been said and written about autism, for example in newspapers and on TV, that the idea is familiar to most people. Studies are being done on hereditary factors, changes in the functioning of neurotransmitters, as well as delayed functioning of some parts of the brain. People think that autism is incurable, and that it will always be part of life, but you can learn to live with it, and daily life can be made easier with rehabilitation and a structured daily program.
Nowadays, my daughter lives in a group home, and we talk on the telephone a couple of times per week. Either she calls me or vice versa. We also send each other text messages about once a week.
Henna comes home about once a week. On vacations and sometimes on weekends we go to the country. We try to arrange things so that from time to time the whole family can be together at our country cottage. Often, Henna and Toni (Henna’s brother) come to my house for dinner, so the family can spend time together.
A diagnosis of an autism spectrum disorder begins at home or in the day home, where we tend to notice developmental delays, abnormal development or deviations in speech development. It is customary for the child health clinic to direct us to continuing examinations. If a child is already in school, the directive to continuing examinations will usually come from the school’s healthcare office. Or else the parents may independently make an appointment at the neurologist’s office, and will be directed to continuing examinations from there. In the Helsinki metropolitan area, there are examination periods available at Lastenlinna, a pediatric hospital affiliated with Helsinki University, where examinations and directions by neurologists, neuropsychologists and speech therapists are available.
I don’t believe there is an autism epidemic. Perhaps it may be that in some areas there is a greater readiness to make autism diagnoses than in other hospital districts. Of course, one has personally considered the possible effect of some things on the development of the fetus, especially in the phase of brain development. But these are questions that have no answers.
In my daughter’s case, the structured daily routine has been a very important and clarifying factor. Speech therapy is a very important part of rehabilitation, since it has involved considering and trying out different means and possibilities for communication. Music therapy is also available. My daughter had therapy for oversensitivity to sounds and that was a great help to us. “Holding” therapy was also used when my daughter was little, but I don’t think it’s in use anymore.
For those living in the metropolitan area, it is possible for individuals with autism to practice independent living. It is also possible to get assisted, directed and supported types of living. Undoubtedly the opportunities are quite different depending upon where in Finland one lives. In the area of occupational training, there are work experience centers where one can go. They give a little pocket money as a “wage.”
As for communication options, it’s possible to use signs and to communicate using pictures. Picto images provide a somewhat better possibility of more extensive communication than do, for example, photographs. A writing tablet is another possibility, if the person can read. Facilitated writing is another good mode of communication as is writing without facilitation with the aid of a communicator or a computer for those who succeed in using them.
Autism really affects my everyday life. I need an assistant who helps me, for example, in getting my work done. She clarifies things for me either with words or pictures, and she helps me to concentrate. If a problem arises I need another person’s help so I also need an assistant in moving around away from home. Since I can’t speak, I can’t ask for help. It’s difficult. Facilitated writing doesn’t work with all of them. I’ve needed a lot of rehabilitation to have gotten even this far.
In Finland, autism is defined as a neurological illness, as a handicap, caused by changes in genes and in the brain’s neurotransmitters. I don’t think there is an epidemic of autism.
I myself am an autistic person. I have had a lot of rehabilitation. Autism makes daily life harder, since we need a lot of help from other people. Fortunately, I have had understanding people around me. Before, back when I was younger, we had to make many kinds of arrangements to make the day go by. During school time, my brother took care of me when my mother was working at night.
A diagnosis of an autism spectrum disorder begins first with the suspicion that everything isn’t in its place. Then there is a referral by the neurologist to Lastenlinna, a pediatric hospital that is part of the Helsinki University hospital complex, for an examination, and years of rehabilitation and follow-up. I have had good doctors and a good psychologist. And we mustn’t forget speech therapy.
As for kinds of treatment or therapeutic care used for autistics, intensive rehabilitation, structured daily routine, and personal assistants are all very important. For autistics who are unable to speak, Picto images, other pictures, signing, and writing tablets are important means of communication. Facilitation (facilitated communication) has been the best thing for me.
There are very different kinds of opportunities available to autistics. Some people go to occupational training. Others live at home and yet others, like me, live in group homes. As hobby activities, I have been involved in a theater group and swimming.
Anita Simola-Laulainen and Henna Laulainen
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.