Autism will not disappear, it cannot be cured, while properly managed children with autism are able to function completely independently in adulthood, and their professional or private life does not have to give way to the life of neurotypical people, argues Jarek Szubrycht, journalist, Igor’s father, who struggles with Asperger’s syndrome. The book Look Me in the Eyes of John Elder, an American technician who supervised the special effects of concerts by bands such as KISS or Pink Floyd, has just been released, in his translation. It is a story about the childhood and adolescence of Elder, who was able to make a huge advantage out of his disorders and the personality of a weirdo.
Damian Gajda / Onet: Your child behaves differently than his peers. You go to the doctor and you hear “Asperger’s Syndrome”. Do you remember that day?
Jarek Szubrycht: In our case, it was a bit different. Doctors – paediatricians, but also a neurologist – ignored our parental doubts, claiming that children develop differently and everything is fine. They convinced me, but my mother did not let her go, especially as she was just finishing postgraduate studies in speech therapy and some of our son’s behavior was disturbingly similar to what she learned in the autism class. So we went with Igor to Professor Jagoda Cieszyńska, whose student at the time was Monika. Conversation, test … and we already knew it was on the autism spectrum, possibly Asperger’s syndrome.
You were aware of the disease you are dealing with, but for many Poles Asperger’s syndrome is still little known. How many people in our country suffer from it?
Hard to say. Until recently, it was estimated that autism spectrum disorders affect about 1 percent of the population, but this year in the United States, there is already one child in 50. This may be due not so much to an actual increase in such cases, but to better diagnosis. Once upon a time, high-functioning children, including Asperger’s, were simply considered difficult, weird, naughty, or simply retarded – but the nature of these problems was not understood.
What is Asperger’s Syndrome really?
It is a developmental disorder within the autism spectrum, characterized by impaired social ability, some thinking rigidity, obsessive interests, but relatively normal cognitive development. However, I am not sure if my son has Asperger’s Syndrome, because later this diagnosis changed, depending on who and at what stage it was. We were once told it was Asperger, then we were told that high-functioning autism – anyway, it was for sure the autism spectrum.
In the book “Look Me In The Eyes” by John Elder Robison, translated by you into Polish, he is struck by the author’s confession that his childhood was “painful and lonely”. Are children with Asperger’s syndrome in Poland at risk of ostracism?
John is a real hero. He had to cope not only with his own deficits resulting from his ailments, but also with functioning in a pathological family – with alcoholism and aggression of the father and the mother’s psychoses. Besides, he could not count on understanding, neither in school nor in the peer group, because at that time little was said about autism. Today, also in Poland, it is so much easier that we know what kind of problems our son has, so at least we can try to prepare his teachers or colleagues. We can also prepare Igor, explain situations that are difficult for him, work on communication. But, of course, all the difficulties cannot be removed. Autism is a disability that cannot be seen with the naked eye, which is why it happens that someone is outraged by his behavior, believing that he is rude. His peers are also impatient with him. We are not pleased with such behavior, but it is hardly surprising. It is human nature to tolerate differences poorly. However, I think that experiences as traumatic as those of the author and the protagonist of “Look Me In The Eyes” are rare. And fortunately.
You mentioned your son’s peers. How are children with Asperger’s Syndrome treated by them?
Young children hardly notice what is different, or they hardly care until someone notices it. But the flip side of the coin is that autistic few-year-olds do not particularly seek contact with neurotypical peers. They rarely get involved in their games, and if they do, they get bored quickly or the contact is so specific or burdensome that other children get discouraged.
Later, on the one hand, it gets worse, because the more years, the more problems. Communication becomes more complex and hence the autism-related deficits more noticeable and irritating. But you can also explain more to your peers, prepare them for such contact. A lot depends on the parents. If they are raising a child to be tolerant of difference, there are no big problems. Children can be brutally honest on their own, but they are more open than adults.
Children with Asperger’s Syndrome suffer from social interaction disorders – they are reluctant to cooperate with their peers in the group, have problems with verbal communication and have very specialized interests. But such a tendency is also shown by some healthy children like young geniuses. So how do we know if our child suffers from Asperger’s Syndrome?
But it is children with Asperger’s Syndrome that are often referred to as “little geniuses” or “little professors”. The obsessive, specialized interests you mentioned, such as geography, astronomy or technology, combined with high intelligence, make us think that we are dealing with an outstanding individual, ahead of our peers. Yes, it does. But first, not everyone with Asperger Syndrome has above-average abilities, and second, accelerated cognitive development and retarded social aggravation further aggravate contact problems with the peer group. And this cannot be underestimated, because such a “little genius” must function in society when he becomes a “great genius”. Without this skill, all his knowledge will be useless.
On the other hand, when it comes to verbal communication – i.e. speech development – it is normal in children with Asperger’s Syndrome, while the use of this speech is inadequate to the situation. If someone is concerned about the behavior or development of their child and suspects autism spectrum disorders – they should contact one of the specialist centers, such as Synapsis in Warsaw or Effatha in Krakow – in order to obtain a professional diagnosis.
Polish doctors have no problem treating disorders related to Asperger’s syndrome? What are your experiences?
Treatments vary widely and their effectiveness usually depends on the individual case. They most often consist in practicing communication and social situations that are easy and natural for neurotypical children, while for autistic children they are problems that are impossible or very difficult to solve on their own.
Our children are under the care of psychologists, educators and speech therapists. Hard medicine usually does not have much to do with it, except for occasional consultations with a neurologist or psychiatrist, required, for example, to obtain a disability certificate. It is worse when autism is accompanied by other ailments, such as epilepsy, which unfortunately is not a rare phenomenon – but that’s a completely different story …
So you cannot expect doctors to be able to cure someone of autism. Ideally, pediatricians should know more about it, which in many cases could speed up diagnosis, sometimes many years, and thus start therapy earlier. And the sooner the better the results are obvious, because the young brain is the most plastic.
As parents of a child with Asperger Syndrome, did you get any support from the state?
On the basis of a disability certificate – because although it is not visible to the naked eye, Asperger’s syndrome or autism is a disability – you can obtain a certificate thanks to which the preschooler will receive several hours of therapy a month. And at this stage, this is a drop in the ocean of needs. Older children, with a certificate of need for special education, theoretically should have a support teacher in the integrated class, but this system does not actually work, money from the educational subsidy for disabled children in public schools does not follow them. We are in such a good position that the son goes to community school, but it is generally not good.
Unfortunately, it is not Sweden or the Netherlands and systemic solutions for families suffering from autism – because this is a problem faced not only by autistic children, but also by their parents and siblings – do not exist. In addition, there are times when people sit on disability review boards who have no idea what autism and Asperger Syndrome is. A teenage boy with such a condition in a conversation at a table with an older person will do great, but disastrously among peers. The Commission, however, is only interested in what it sees, in those few minutes, with the naked eye. Hence, sometimes autistic people have problems with obtaining a decision, lasting for months or even years of appeal or court cases. Such is the support.
The environment in which they grow up – school, family – is extremely important for people with Asperger’s Syndrome. Apparently, drugs and therapy are not able to work as much as support for loved ones.
There are no cures at all. All that remains is love, understanding and hard work on the part of the family, as well as openness, tolerance and … also hard work on the part of the caregivers in the kindergarten and school. But the effects can be amazingly good. As I have already mentioned, autism will not disappear, it cannot be cured, while properly managed children with autism are able to function completely independently in adulthood, and their professional or private life does not have to be inferior to that of neurotypical people.
This is also what the book I translated is about. The protagonist of “Look into my eyes” has come a long, bumpy road, he has been given a bone from life – but there is a happy ending. His greatest success is the fact that he is doing well in life, he is a beloved father, husband and brother, and at the same time a man who has achieved many spectacular successes at work. As he proudly emphasizes, he is still autistic, but no longer disabled.
- For the daily support of autism therapy, use Weighted blankets, which you can buy in various sizes at medonetmarket.pl.
Is Asperger’s Syndrome Inherited?
The etiology of autism is very complex and has many factors that, when combined, lead to the disorder. Yes, there is a gene for autism, research is ongoing and who knows, maybe someday there will actually be a cure that can fix it. But autism is not simply inherited, there are many other factors – pesticides, heavy metals in food or vaccines are talked about and written about, and problems in utero … Disputes and research continue.
What is your daily life like with a child with Asperger’s? Do you have a lot of illness?
Please, no disease – my son is different, not sick. Which, indeed, can be tedious. It is difficult to answer the same question for the tenth time in a quarter of an hour, it is hard to keep up with the pace of numerous therapies, and it always entails a heavy burden on family budgets. But I don’t want to complain. He is making progress, he is doing well at school, he is a cheerful, sociable boy, more and more cool companion. He will definitely be a great cook or computer scientist – today, at 11 years old, he only considers these two options, but who knows what else he will come up with. I believe we are on the right track.
Are there any special organizations in Poland supporting parents of children with Asperger’s syndrome?
Yes, many foundations and associations, such as the Krakow Association for Autistic Children “ZACISZE”, to which I belong. http://www.zaciszeautyzmu.pl/ These are most often grassroots organizations, on the initiative of parents of children suffering from autism or therapists.
And if anyone is interested in this problem, I recommend the Review of Films on Autism and Asperger’s Syndrome, organized every year in Krakow.
This year it will be held on November 21-23. The screenings of the films will take place at the Mikro Cinema, and on November 21, at the PWST, you will be able to see the performance “A Man Who Mistook His Wife For A Hat” directed by Krzysztof Globisz. You will also be able to meet therapists and parents of children with autism and Asperger’s syndrome. I cordially invite you – as I mentioned, you cannot get infected, but you can learn many interesting things. About myself as well.