Living with autism: Petra and Michael’s story

Henriette Lamprecht
The bond they share is one that needs no language.
When 27-year-old Michael Dillmann makes a certain noise, it is mom Petra who immediately knows what he needs and what he wants to say. Playing with an empty bowl, listening to music or looking at pictures on his iPad, he is never really quiet, with Petra always hovering close by to listen to and encourage her firstborn.
Michael has autism and for more than two decades, Petra has relentlessly studied the disorder, compiling a wealth of information she now shares through Autism Namibia.
Michael was born in Harrismith, South Africa, and everything seemed normal, says Petra. While her baby boy was healthy, it quickly became clear that Michael was not meeting his developmental milestones.
“He didn’t make eye contact, was clumsy and didn’t smile that much, but was a very relaxed baby.”
Friends and family attributed the fact that he didn’t reach basic milestones to him being “lazy” and a “typical boy”.
Harrismith had no paediatrician and on a home visit to Windhoek when Michael was seven months old, Petra took her son to see a local paediatrician.
The doctor suspected a pulmonary stenosis and noticed some delays, urging Petra to see an occupational therapist.
“Whenever we were in Windhoek, Michael received physiotherapy by a physiotherapist who was trained in neuro-developmental therapy (NDT).”
Michael did not like any weight on his arms. When pulling him up by his fingers, he’d let go as soon as he felt some resistance, or had to work for himself. He also did not respond as expected to the frequency rattle, but he would hear immediately if Petra stepped on the bottom step in the family’s two-storey house and was extremely sensitive to the drawing of curtains or zips.
Questionaire
The family was referred to Universitas hospital in Bloemfontein to run tests on Michael’s heart and at the same time they went to see another physiotherapist with NDT training.
“We checked out and discarded many syndromes or illnesses, including autism, because Michael was an open and friendly baby.”
Through discussions and asking questions, the family found their way to Unica School in Pretoria. Before agreeing to an assessment, a preliminary questionnaire had to be filled out, with an eight-month waiting list as assessments with the whole team could only be carried out twice a month. In the meantime Petra carried on with occupational and physiotherapy.
“After the assessment and the cautious diagnosis of mild autism, the Unica School team agreed to see us on an out-patient basis every two to three months.”
At the age of 2½, Michael was diagnosed as being autistic, although “mild, maybe borderline”, as no one wanted to label him or make a definite diagnosis.
The confirmation of the diagnosis of autism came as a shock, says Petra, but at least they knew which direction to take.
“All parents have dreams for their children, be it academically, musically, in sport or elsewhere. It takes a while to get over the ‘why me’ question. Well, why someone else? Why at all? This is what this world is and we cannot dwell on things, we must look ahead and do something.”
Thanks to understanding occupational and physiotherapists, therapy was started early and included a lot of sensory integration.
According to Petra the therapy went well, until Michael’s assessment three weeks before the delivery of her second child.
“I had not worked with Michael as much as I should have due to Round Table commitments and me feeling big and heavy, he had not made much progress since my last visit. Then came the news that Michael had been placed on a waiting list to be admitted to the kindergarten section of Unica for 1993. That came as a greater shock than the confirmation of the diagnosis of autism.”
The thought of putting her three-year-old son in a boarding school was “unthinkable”. While in Harrismith, Michael attended the regular English nursery school with Tryphina, his Sotho nanny. When the family moved back to Namibia in 1994, he had a young German lady who started off as Au Pair and who became Petra’s “assistant friend”. She stayed for six years.
Petra describes it as “unfortunate” that in Namibia and South Africa as well as elsewhere in Africa, autism is still fairly unknown.
“We never hid Michael and were always prepared to discuss any questions people asked. As active Round Tablers, we did a lot of travelling and Michael was often schlepped along, especially when he was younger. Often people probably thought I was a neurotic mother hen, but I did what I thought was right and I am glad about it. I bombarded my parents and parents-in-law with information to make them realise that Michael is who he is and that the situation could get better through intervention, but would never disappear. I maintain that the more we do now, the less we may have to do later.”
Various paths
Petra joined autism societies in South Africa, England, Germany, Belgium, America and Australia to see what the different approaches were.
“We adapted the information, therapy and methods to suit our needs. I read many accounts by autistic persons or parents of autistic children. Through the internet I now have contact with many parents and persons with autism all over the world, gaining knowledge and thus am able to assist others whose journey has just started, or getting assistance from yet others who have been down the various paths already.”
She confesses she collected so much material, she could open a library and is busy categorising and listing information, hoping to start an information network for South Africa/Namibia with abstracts of newsletters, books, medical material, and addresses of where to obtain things so that people can then order what they are interested in.
With all the different programmes, therapies and medication available and each autistic individual being different, Petra believes that a tailor-made combination of therapies, vitamins, educational programmes, physical exercise and sensory integration will work the best in the long run.
“Force does not work. A person will only learn something when they are ready for it and not when you decide they are ready.
“Some people, including one’s family, might insist that you are wasting your time and should get on with your life and not let one person disrupt everybody’s life,” Petra says.
However, the best approach is give and take.
“We can all only do our best. For some it is more, for others less. It is often also very difficult for people to accept that it is a lifelong disorder that cannot be cured at this stage. But you can do a lot to improve the quality of life of your child and your family.”
She warns to be open-minded about therapies.
“With every new medical treatment or therapy one’s hopes tend to soar and you think, this is it! Yes, it is good to be positive, yet one should remain realistic with any new approach. Don’t accept or discard any approach until you have viewed it from all angles, positive and negative.”
For her it is good to try new therapies, ideas or medications if it does not disrupt the autistic person’s life or family life in general too much and if it is a treatment that is tolerable.
Referring to integrations, Petra says for some people it will work while for others it won’t. According to her, autistic or other handicapped people must have some basic skills and or abilities before they can be integrated, eg. sit still for some time, obey instructions and have some self-help or coping skills.
“We cannot expect the teacher in a class of 25 to make a certain amount of extra time for one child. Most teachers are overworked as it is and it is also unfair on your child and the other children.”
In an everyday living situation, i.e. in the playground, at the dining table, in shops, etc., integration is easier to implement. Disabled children learn to cope with nice and nasty people and other children hopefully learn to accept and to help the disabled person.
“In time, people with handicaps might become more naturally integrated and not seen as social outcasts any longer.”
Of course they also wonder what will happen to Michael or what his prospects are, but in the meantime they look ahead Petra says. They work with what they have and try and help Michael to understand this world.
“We cannot change the past, therefore we must try and make the best of the future.”
What is a home programme?
“To us it is a programme that is carried out mainly at home so that Michael hopefully ­acquires the skills to function in the typical society. This means that he should have some level of independence, i.e. toileting, dressing, eating, asking (or indicating) for help, road awareness, reading and writing, counting, leisure skills.
“Even if he does need to remain in supported living, there are some basic things that we’d like him to know and/or do. We have not restricted our aims and hopes to a certain level of functioning, but we are also not expecting to produce a wonder child or miracle programme within a year.
“As it is so difficult to know what Michael’s IQ or actual level of understanding is, we assume that he understands everything but explain and show things over and over, until he masters them. What amazes me is that he often grasps some things much faster than others-especially if it is something that he fancies or that arouses his interest. On the one hand it is good to have him at home and to be in charge of what he learns and how. But on the other hand, like any typical child, Michael does manipulate me and his other primary caregivers.”
Where to start?
“It is vital that the child gets a professional assessment which should be updated from time to time. Once you have an assessment you will know at what level the child is functioning in which area, and that forms the basis of the programme.
“Do not be shy to talk about autism or whatever else the diagnosis might be. There are as many understanding and helpful people out there as are those who do not want to understand. From the beginning, I have taken Michael everywhere, be it on weekends or be it shopping.
“Through Unica we were introduced to the START programme, a wonderful and easy to use programme for children up to a developmental age of 3. In other words, it includes all the milestones in gross and fine motor development, language and daily living skills. One very important point to remember at all times is the level of functioning of the child. The older the child gets, the bigger the gap between delay and actual age.”
“Listen to your child, talk and explain at all times, even if he does not seem to hear you.”
She says that whatever programme you develop, it should balance physical and intellectual exercises, and be integrated in the whole set-up like dressing, toileting, washing, eating and other social interactive activities.
“In establishing our programme/routine, we used the ME book (behaviour modification), the TEACCH books (left to right, top to bottom, organisation, routine, ideas) and sensory ­integration training ideas. I think it is quite important that your therapists, if at all possible, are NDT trained, as they have a better knowledge of your child with autisms whole sensory system
“By ‘training’ myself through obtaining books and attending conferences, and by working closely with therapists and teachers, we developed and improve on a home-programme, made up of elements from various approaches and tailored it to suit our changing needs. We also use dietary intervention to complement our programmes. As Michael gets older, the needs change and as an adult the emphasis is more on daily life skills rather than academic skills.
“Now – at the age of 27, Michael is showing an interest in letters.”
• [email protected], www.autism-namibia.org