Case by Jan Scholten.
Boy, 6 years, autism.His speech is delayed and he uses only some single words like “Mom’. He makes very little contact.
His mother writes this report.Pregnancy
That was my second pregnancy. I was pregnant for the first time with my older son, born in 2008. Both pregnancies were difficult. During the first one I suffered from cholestasis, as a result my first son was born prematurely almost in the end of 35th week of pregnancy. He was healthy, though small 2600 grams.
Before my son was born I had been waiting and dreaming of having another child, I mean, I wanted my older son to have siblings very much because I myself am the only child. I never had problems with getting pregnant, I and my husband waited with the decision to have the second child more than 6 years because of our living conditions – we needed to buy a flat.
When we finally bought a flat we knew that the next thing would be fulfilling our dream for the second child. Before I got pregnant I remember a very special visit at a gynaecologist. The doctor I went to wasn’t my regular doctor. I, my husband and our son were going on holiday to the seaside, and about 1-2 days before our journey I went to the doctor for a check up. I asked the doctor what she thought about my decision of having another child after the first pregnancy with cholestasis, and a child born prematurely. She strongly and discouraged me from getting pregnant again, I do remember her words that I shouldn’t get pregnant, that it’s dangerous, risky and she gave me a warning (I have treated it as a curse) that there were people who could and should have only one child, and these people should accept it and deal with it, I DO remember her words: “Do you really want to suffer and cry all the time dealing with the consequences of your decision – that will be looking and taking care of your child who may be born ill, very prematurely, with malformations and health problems resulting from the difficult pregnancy and premature birth?” What is more, she examined me and said to my great shock and disbelief that I was pregnant already (during this very appointment) but this was ectopic pregnancy. She ordered me to do the ultrasound immediately.
As a result shocked and panicked I went to another doctor to check her diagnosis, but fortunately it turned out that it wasn’t true. I wasn’t pregnant then, the horrible doctor was wrong. But I couldn’t forget her words.
I got pregnant in October and the due date was on the 10th of July. My son was born on the 2nd of June, he was delivered through Caesarian section. The pregnancy was bitter – sweet. On the one hand I felt elevated and happy, I treated it as my dream coming true. But on the other hand I felt tremendous stress and fear for the baby. I found a really helpful and supportive doctor, a woman doctor who I visited regularly- every 3-4 weeks, I had to be on a diet, which I tried to follow especially when my blood results got worsened. I did blood tests every month, every time I received the blood test results I was stressed. I testes the levels of aminotransferases (AST or ALT). When the levels were okay, I felt relieved, but still the fear the child in my belly never stopped.
Throughout the bigger part of my pregnancy the results were okay, but starting from April AST and ALT got higher and higher. At first I had to be very strict about my diet- I needed to protect my liver, then I needed to take some medicines that helped my liver’s condition like Essentiale Forte and finally Ursofalk- a strong medication which contains ursodeoxycholic acid, the package leaflet says that it shouldn’t or even mustn’t be taken by pregnant women at all. It helped for about a week, my blood test results improved, but a week later, they deteriorated and I had to go to hospital. I went to hospital in May and spent there a month, until the delivery. At hospital I often felt fear and extreme stress. I remember especially two situations. Once after I showered and washed my hair, maybe because I felt cold, I started to shake, I was lying in my hospital bed a I kept shaking, then suddenly a horrible thought came to me that my child might be dead-end that was why I was shaking. I got panicked and went to the nurses’ room and asked for help, because I thought I didn’t feel my baby and his moves, a doctor came and checked on me, everything was okay.
Then another time, when my blood tests at hospital were really bad, doctors decided that they had to take and test my amniotic fluid, they did the puncture which was very stressful, because I knew about the risk of the earlier delivery. Fortunately the results were okay, nothing bad happened, but the whole procedure and waiting for the results were extremely stressful.
In fact the delivery occurred the very next week, precisely a week after the puncture.
Throughout the pregnancy I also suffered from oligo hydramnion due to or in pair with gestational diabetes. However, the results weren’t very serious/bad, I needed to follow a special diet, I had to check the level of blood sugar 3 times a day at hospital, I also needed to drink lots of water- more than 2 litres and I had to pee to a container, measure and write down in a diary how much I drank and how much I peed. That was a little tiring. But I knew I would do anything to keep my baby safe and healthy.
Delivery
My son was born on the 2nd of June, he weighted 2550 grams and was 55 cm long. I had an epidural anaesthesia, then a C-section and I remember that the doctor was very rough (in contrast to the doctor who delivered my first boy also through C- section, he was nice and funny). He took out my son, I didn’t see him, but some time later I heard his first cry, my baby was crying but then suddenly he stopped, there was some commotion but a few seconds later he resumed crying. A nurse showed him to me, he was tightly packed in a blanket and I saw him for about 1-2 seconds, the doctor later told me the baby received 9 out of 10 points on the Apgar scale. As a preemie he was taken to a special ward, he didn’t have problems with breathing but he needed to stay warm so they placed him in the incubator. Then I was taken to a recovery room, where it took quite a long time for my body to get rid of anaesthesia, in fact I wasn’t able to move my legs for a longer time than other patients lying there with me.
My husband made a video of my son and before I could get to see him in person I had watched the video of him. My son stayed in hospital one week, he was born on Monday and we could take him home next Monday. While he was still in hospital doctors told me that he had a cerebral haemorrhage of the 2nd degree and he had little problems with breathing shortly after he was delivered.
While I was in hospital (only 3 days) I did not have the child beside me, he was on this special neonatal ward. I missed him very much. He got all the vaccines according to the hospital procedures. I didn’t breast feed him, I tried to express milk, my milk was given to him but also the formula. He was initially tube fed. When he finally started to eat the appropriate amounts of milk/formula he could leave the hospital. As far as I know he had neonatal jaundice. I visited my son every day, I tried to feed him but with the bottle. Once I saw that he had extremely red skin on his body, it turned out that his skin was allergic to a regular baby soap and he had to be bathed in special, dedicated to sensitive skin products.
First months and first problems
Of course, as it is in the case of preemies after leaving the hospital we had to visit different specialists to check on our son. We checked My son’s eyesight, we did fontanel ultrasound, we went to cardiologist and neurologist – everything seemed fine. When we visited physical therapist- he said that my son’s body position, the way he was lying flat on the ground wasn’t correct. But the doctor said that it was normal for preemies and probably it would improve.
The first huge problem I noticed was while I was feeding my son. I had expressed my milk and gave it to him with a bottle, he had appetite, but there was something wrong with my breasts, I got fever, the breast got engorged, I felt pain, as a result I got some medicines, I stopped expressing my milk, and after the treatment I didn’t resume it.
At first my son received a regular formula, but it turned out the he was allergic to milk protein and he had to be fed with a special formula. But in fact, the act of feeding my boy was horrible for me. After I couldn’t provide him with my own milk, he got this formula but then the first horrible and hard for me as a mother problems started. When it was time to feed him, and he felt hungry he started crying but he DID not want to take the bottle’s teat into his mouth, he was crying violently, he was mowing his head from the right to the left, I couldn’t make him grab the teat. When I finally made it, he drank very shortly – about 1 or 2 minutes but in a very violent, greedy way. Then he stopped and didn’t want to continue drinking the formula, though he drank half of the portion appropriate for him. I cried, panicked but I couldn’t change that.
The situation finally improved when he was 4 months old and I started to feed him with a spoon. Everything was smooth then. He ate very nicely, he gained weight and everything was all right.
The next problem I noticed when my son was 7- 8 months old, he didn’t react when I called him by his name but It didn’t worry me as much as the fact that when I disappeared from his view, when I left the room he didn’t react, he didn’t cry, he seemed not to notice that, I became worried and googled the lack of separation anxiety – then I saw the term autism for the first time.
It’s funny but when I got pregnant with my first child, after I gave birth to the first son I was afraid that in future he might be autistic, I didn’t have any reasons to believe so, but I kept this thought in the back of my head. When the first child’s development was very typical, by- the- book type I relaxed, and got rid of that thought.
When my son was one year old – exactly, he got ill with serious pneumonia, and he had to be hospitalized, his breathing was hard, he got 2 antibiotics in hospital, after the first antibiotic the condition of my son wasn’t improving, after the second one he finally got better. At hospital he also got diarrhea, he vomited. We left the hospital after 2 weeks and went straight to the seaside for 3 weeks. I remember that before he suffered from pneumonia- he had got pneumococcal vaccination. When we got back from our holiday he got vaccinated for measles, mumps and rubella. Later I discovered that it was much too soon after we got back from the hospital.
As far as the physical development of my son in the first year I did not find any problems, he walked on all fours. When he was about five months old I was really proud because he seemed to know how to clap his hands – he imitated us, my older son learned that skill much later. But the he seemed to forget this skill, and kept on clapping his hands when he was one year old.
After the first yearHowever, I decided to check and make sure that my son wasn’t autistic. He still didn’t react when he was called by his name, he didn’t learn how to walk. He could walk when he was 19 months old. He smiled very rarely. When I took him for a walk in his pram/carriage he was not interested in what was going on outside his pram, while my older son when he was in his carriage was uprooted, and very careful/cautious in the seat of his pram- he looked around with curiosity, pointed things with his finger- nothing like that was happening when my younger son – autistic son was traveling in his pram. He sat in the pram in a very sloppy way, even lying not sitting, as if he didn’t want to pay attention to what was going on outside his pram.
Given these facts I started to apply for the tests, psychological visits to rule out or confirm autism. It took almost next two years. We got the diagnosis of autism in March 2017. But since I had known something was wrong, my son started seeing a therapist and having therapeutic activities- about half a year earlier than the diagnosis.
my son couldn’t talk, point with his finger. He was very moody, cried very often. He preferred sitting to being active. He couldn’t jump.
When he was 3, 4, 5 years old he liked going for long walks, he liked playing on the playground, he preferred slides to swings, he wasn’t pretty much interested in playing with sand in a sandpit, however he tried that several times.
When he was little like – one up to two years old he reacted to his brother, he liked giggles, he tried to play with him- in a very limit way but still, for example when my older son hid under the table - he hid with him, he ran away when my older son was chasing him, they swang together, when my son was about 3 or 4 years old we played hide and seek together, which means my older son hid, and my son with me tried to find him. When friends visited my older son, wanted to be with them, he went to their room. As far as other children are concerned- I only noticed, that my son got extremely excited,he waved his hand and laughed when he was climbing the slide on the playground, and other children were sliding right behind him- that made him really happy.
Nothing like that happens now. my son seems to be indifferent to other children, he plays on his own- if you can call the things he does playing.
He has always liked going to the swimming pool, he prefers taking a bath instead of shower. He hated it when I washed his hair/head- he cried and acted violently. Now he accepts it. The same with cutting his hair. HE DIDN’T FIGHT WHILE BEING AT THE HAIRDRESSER’S for the first time about one month ago, in February 2022. I used to cut his hair by myself because of such horrific scenes at the hairdresser’s.
When he was little 2- even up to now he hated it when he got dirty- hands, t shirts – he wanted to change his t shirt as soon as it got wet for example when he was drinking. It still happens but to a definitely lesser extent.
He never learned how to ride a bike but when he was 3 he learned how to ride on his scooter. He taught it by himself. He still rides on his scooter but only at home, never outside.
Food. He is very allergic to eggs especially to eggs white, but to a lesser extent to soya, beef, milk.
He likes eating- he eats quite a lot, but he is very tall and slim. He doesn’t eat sugar/sweets at all, also no milk or gluten products. He adores meat, and fruit. He drinks water. He also eats cucumbers, red pepper bells and buckwheat cakes. For dinner he eats a large bowl of soup- blended vegetables – different kinds and meat. He eats with his bare hands, however, at kindergarten he is said to use a fork. He doesn’t want to do it at home, though.
He used to have big problems with his stomach- he had stomachaches, had had diarrhoea's or constipations, when he was 5 we started biomedical treatment of his bowels and the situation improved. He got many antibiotics like Xifaxan or Metranidazol.
However, nowadays, for about a year he has been constantly defecating – all day long, especially when he walks, jumps, runs- his pants are always dirty to a lesser or greater extent. He doesn’t defecate normally, he won’t seat on the toilet- he doesn’t know how to defecate. The problem started last year in May, he has known how to pee and hasn’t need a diaper since he was 3 years old. I put a diaper on him only before he goes to bed, I keep doing it because would wet our bed if I didn’t. I must admit, I have never tried to change that. What I want say is, that earlier he was used to defecating only in the late evening when he got a diaper on. But a year ago, in our previous kindergarten, the teacher- therapist advised us not to give him diaper after the bath, she assumed (I shared this point of view) that he would poop in the toilet. But he didn’t. What is more, he got blocked so much that he gradually stopped pooping normally, even with a diaper on. Now he defecates little by little all the time. He doesn’t allow us to put a diaper on during a day, so at his kindergarten he wears pants with some pantyliners on. At home he doesn’t wear pants, because he hates it, so I keep changing his tracksuit pants all the time, I also wipe him as often as I can. He even tries to do it by himself, because he notices the it makes me angry when he defecates and make his pants dirty. That is our number one of the problems that we have. Our physiotherapist says that it can be caused by his increased muscle tension.
The next big problem is the lack of speech. Our son can’t talk but he can communicate with us in his own way- he can show us, point finger (he finally learned that skill), he uses some words for example he can say mummy, daddy (with problems with sometimes proper pronunciation, he learned it a few months ago), he has his word for yes and no (they are similar to the real yes or no words but not exactly), he has his own words for his brother and our dog. He didn’t talk at all, it happened about 2 years ago after our bowel treatment, he has improved since he started his classes with clinical speech therapist.
He is not aggressive never has been. However when he was younger than one year old he had 2 or three anxiety attacks- he started crying uncontrollably and violently and didn’t want to stop. He was agitated. Later when he was older he also got furious- usually because we didn’t act as he wished us to act. Recently a rare and strange attack-like happened, he got angry- he had been waiting for his father to get back from work, I’m not sure but his dad was late, and he got more and more impatient. He cried “daddy” and I answered – he’s at work, he’ll be home soon, and that dialogue was repeated over and over again. Finally crying, he sat on the sofa and started waving and moving his hands up and down, uncontrollably and violently- as if he was having a kind of epileptic attack, but he was conscious, I got really scared because he is in danger of epilepsy, he has never had an epileptic attack before but he had his EEG scanned a few times, (tested a few years ago) and they showed that my son is inclined/in danger of convulsions- on the scan there was observed a tendency to epileptic attacks in the frontal part of his brain – frontal lobe. Getting back to my story, when he was acting like that I panicked and started crying loudly and he saw my reaction and stopped. That’s why I’m not sure if it was a regular kind –of epileptic attack.
Sleep. He has always had no problems or major problems sleeping, or falling asleep. Before the bowel treatment, however, he used to wake at night and cried, but maybe he had problems with his stomach. And that did not happen very often. He sleeps with me, he does not have his own bed because I assumed that he wouldn’t want to sleep on his own. He sleeps quite peacefully, he loves covering his head with a blanket/duvet while falling asleep. He often sweats because of that so much that I need to change his shirt. He sleeps about 8-10 hours, recently he does not want to go to bed earlier than 10-11 pm.
Interests and hobbies
He loves sticking to the fixed routine. He freaks over it. We use the same paths, when we go somewhere we need to return using the same way/route. He does different things- in the same repetitive way, for example I must put our bed sheets outside on the balcony no matter of the weather because he is used to it. However when it rains I can just hid the sheets in another room – he accepts it, but the sheets can’t stay on our bed.
Another example of his addiction to different routines- (very often these routines come and go)- about 2 years ago we played together very simple board games, puzzles, he developed a routine that we needed to play each and every of his game every day.
His sticking to routines can sometimes be problematic, for example he developed separate routines when we visit his grandparents. Ex. when we visit my parents, he impatiently waits until we finish our meal together and insists on my father’s taking him to the playground. When they come back after about 15 minutes he is ready to go home, our home. He tries to make us leave my parents’ house for example he brings me my jacket, he puts on his shoes etc. It helps a little when I say I need to eat some cake or drink tea etc. The same happens when he’s at my husband’s parents- though the routines differ a little.
When we don’t want to act the way he wants us to, he cries, he strongly objects.
He has different routines, sometimes they disappear- for example he used to come and fetch me and the older son from the Church, he came with his dad and we had a little fixed-route walk home together.
However, I must admit that his flexibility has been increasing, sometimes I am even able to ask him and he changes a fragment of his routine- but you never know if he agrees on that or not and then make a fight/a scene.
I think he is smart. I believe he knows a lot- understands a lot of the things we tell him. He understands what we want from him, he does things when he is asked- for example let the dog in from balcony, or give sth to daddy. Simple requests. He reacts to his name now. He avoids eye contact still but when I’m telling him something he’s interested in, for ex. what the plan for our day is, that we are going to go somewhere, visit somebody- he can look me in the eye.
He has a very good memory, especially when it comes to doing certain exercises in the kindergarten or remembering a route somewhere. He is better at directions than me, I’m sure he won’t get lost.
His therapists and his teacher at school like him and working with him. He is diligent, very cooperative but, tries to follow their requests but only if he wants to do something. Sometimes he rebels against some exercises. The therapists and teachers tell me that he has got potential but the biggest problem is the lack of speech.
He can’t read or write but he knows some letters- he can read them- he learned them a few years ago.
He seems to be able to learn something, for example when he was 2-3 years old he could imitate or he tried to imitate animals sounds/animals speech, we praticed and then after a couple of weeks he stopped repeating the sounds, and did not want to say them by any means. We thought that he forgot them but a few years later it turned out that he still remembered them and could imitate the sounds and even more of them.
He doesn’t have a hobby. When he’s at home he loves watching and listening to songs on You Tube. Again, these are always the same songs in a certain period of time. For example, he listen to polish songs for children – he could listen and watch them for hours for a couple of weeks, then he turned to songs for children but in different languages, then he turned to songs very electronic, techno-like sounds, with very repetitive beats. He sometimes listens or watch adverts.
He spends all his free time at our bedroom – most of that time, with the phone- usually his dad’s, earlier he preferred mine- on my phone he loves watching shirt videos of him or us on holiday, in the garden from different situations, visits, holidays etc.
When somebody calls us, he rejects the call, when grandma or grandpa calls he can repeat after me his own version of polish “hello”, he is even happy that he recognizes his grandparents over the phone, but still he tries to end the call quickly.
When he doesn’t use the phone the next thing he ADORES is tearing apart cardboard boxes, he can do it for hours, endlessly. That is his stimulation, but it doesn’t mean that he is not aware of what is going on at home. No, he is conscious, he can answer me when I offer him something to eat or drink.
Nowadays he doesn’t do anything with us, I used to read him simple stories, or we watched pictures in the books, but it stopped.
I’m not sure if he likes hugs, he definitely prefers strong, firm touch but he extremely rarely comes to me to get a hug or kiss by himself. When I say “give mummy a kiss” he comes and makes a movement with his head so that I could kiss him.
He loves me, his daddy and his family. I know that, he used to be angry and cry when I had to leave the house, but now he accepts that but my husband says, that when I’m out he continuously repeats mummy- and then his daddy has to tell him that I’ll be back soon or where I went.
We have a Cavalier King Charles Spaniel, which I think he doesn’t like. He doesn’t allow him to stay on the sofa, or to sleep in our bed. I think he is jealous of me because the dog adores me- I’m his favorite person. However, he can call our dog’s name, he also doesn’t like it when the dog is drinking water, our son then tries to disturb the dog and stop him from doing that.
Nowadays my sun is very cheerful, he likes smiling and laughing, he used to be very sad and moody.
He adores going to his kindergarten and to his additional therapeutic classes/activities/
He enjoys traveling- by car, bus, train or tram. That’s his favorite activity. He has a toy tram which he sometimes plays or played, he also go a toy bus- which he hid under the bed. He is interested in trains- he also watches or used to watch videos from train stations or coming trains on You Tube. Since I commute to work by train I made a video of the train doors closing and opening, he liked watching that very much.
We have a wardrobe and I think he tried to play that the doors of that wardrobe are the train doors because he kept opening and closing it slowly – like he was on a train.
He smiles when he wakes up and sees me. He likes then when I hug or giggle him.
He likes jumping and running on the bed, he also learned how to climbed the cupboards- but that happened only recently about 1- 2 years ago, when he became more physically active and physically self- assured.
I think better things started to happen after our medical treatment of his bowels. But he also reacted nicely for mitochondrial therapy.
He is calm, not overactive, he tries to do what I want him to do. For example, when we are outside and he runs I tell him to stop or slow down, and he does so.
He seemed indifferent to pain, or his reaction was really not adequate. It changes slowly, however.