I met with one of my oldest friends, Vendy, to talk about how is it to raise a child with an Autisms Spectrum Disorder. She hopes that this conversation might help others.
When and how did you notice that your son is a little bit different?
At what age are children usually diagnosed?
Is early intervention important?
Did you visit a specialist after?
How was the diagnostic process?
We noticed minor differences as early as six months – a conventional waving of hands, became a repetitive stimulus at a frequency that was un-natural. This was followed by a fanatic game with a specific piece of foam puzzle that was an abstract shape, which always had to be present. For example, we had to have a pot lid on the kitchen counter for half a year. In the early age of childhood; however, most of these differences are often connected to the specificity of childhood, playfulness or imagination, “he will grow out of it.” But he didn’t.
The next stage, when other institutions outside of the family started dealing with the problem, was when he entered nursery school. If a three year-old doesn’t express themselves verbally and communicates predominantly by using gestures and at the same time does not have a natural need to integrate into society, as was the case with our child, specialists will ring the alarm and start a diagnostic wheel. First, the child meets a child psychologist, usually within the Special Education Center, followed by a detailed neurological examination. EEG and CT scans are done in the hospital to exclude tick, or brain abnormalities, that could eventually lead to possible obsessive behavior. The last institution is child psychiatry, where the final diagnosis is made. However, this is usually not determined in preschool children due to the lack of cooperation from the patients and the specifics of childhood. Misdiagnosis and subsequent poorly targeted care can have a very negative impact on the child’s development.
For this reason, I would advise all parents, even if there is the slightest suspicion of autistic elements in their child, to not hesitate to contact a professional workplace. But don’t be in a hurry to make a diagnosis!
You have studied special pedagogy, so you are educated in this area. Do you feel it is an advantage?
Yes, I perceive it as a great advantage. Given the knowledge of the disability combined with my maternal instinct, I was the first to identify the problem. I was already aware of a network of support institutions and specialists that could help us in our journey with an autistic child. At the same time, I was able to name the individual stages of accepting the disabilities that I, as a parent, would go through, and making the whole situation easier for me.
Autism is a spectrum disorder. How big are the differences between each stage?
The differences between types of autism are huge, but they always have three common denominators: impaired social interaction/behavior, communication, and imagination/play/interests. For this reason, it is necessary to approach the child individually in the framework of educational methods.
What kind of skills or behavior is influenced the most? Besides challenges, does your son also have some special talents?
The autistic child misjudges the received information, which leads to subsequent problems in communication and social relations. Simply put, he understands the world in a different way. He often devotes himself very intensively to specific interests such as astrology, timetables, and clings to ritual activities, as is the case with our son. At the age of four, he knew all the planets of the solar system, was able to describe their structure, the number of moons, and was interested in the chemical elements in their nuclei. Followed by focusing on the highest mountains and towers of the world, from zoology snakes and monkeys. All these interests had an extreme influence on most of his day, thanks to which he gained a lot of the knowledge, even down to the smallest detail. Talent? Absolute discipline and a strong will to learn new things, to understand the scientific text in combination with a perfect memory.
What are the biggest challenges in raising your son that you faced until now? And what are you concerned about in the future, when your son starts school, for example?
The most difficult thing for me was that my child would probably be alone in the future. He won’t have the need for anyone else, his wife or partner. We are also starting to face the biggest real problem of Asperger’s syndrome anxiety, often leading to suicidal tendencies in the future. It’s very hard for a mother to hear from her baby, “Mom, I don’t want to be here.”
Personally, I’m a result-oriented person. I had to learn to leave this idea behind in the case of my son. As his parents, we had to accept the fact that he probably will not graduate from university. He might not even be able to organize himself enough in the morning to go to work. These are all the real threats we face.
People can be mean and children even more so (because they don’t yet understand why somebody is different), did you face some negative comments or reactions from people?
Sure. Sometimes it happens. A misunderstanding has even occurred in the family. If a child doesn’t speak at the age of three, as a mother, people suspect that you are not reading to him enough, working too much or not paying him enough attention. The surrounding environment can also sometimes cause the communication differences of the child to reflect negatively. The baby does not respond, does not look into your eyes, or tells you without thinking that you are stupid because you do not know how many eggs a black mamba can bear.
What can parents do in order to help their child improve their condition and include the child into school and society? Are there any exercises? Do you visit the specialist regularly, or do you work with them at home? Does the treatment include some medication?
Love them and do the best you can. Be educated in the area, get advice, and professional help. The life of an autistic child is usually governed by a regular routine, a strong motivational system, and other supportive measures. For example, my son has a timer set to control his dressing every morning. Without active time management, he would not be able to go on his own. At the same time, he gets a sticker on the motivation table resulting in a reward for every day that he does not say or otherwise express that he is stupid, ugly, or unwilling to live. We also use certain techniques to manage autistic seizures or to cross his borders. All this is the result of several hours of work with psychologists and other professionals with whom we regularly work.
Autism is still an incurable pervasive developmental disorder. Medication for the elimination of anxiety or hyperactivity may help a little here, but special educational methods and an individual approach, are usually needed.
How many % of autistic children can lead a normal productive life when they are adults?Where are they on the spectrum?
It is almost impossible to predict to what extent a person with autism can lead a normal productive life, given the number of differences in each of them. My six-year-old son, for example, has academic knowledge in several areas but does not have enough time management skills to get dressed and go out, or to respond quickly to a sudden minor change. I do still believe that with our help, he’ll be able to do it.