People with autism have feelings – they just express them differently

When he was three years old and went to daycare, they told us that he was unable to do many tasks that other children of his age normally can. So, we took him out after a few months and tried again a year later.

But things didn’t get any better. He often rubbed people the wrong way and, as a result, he became more and more withdrawn. He mostly played alone, building traps out of building blocks and putting toy animals inside them. It was as if he felt just like the animals: trapped and alone.

For the first six months of his time in elementary school, he went to a Waldorf school. Although the children were given clear tasks there, Thomas felt overwhelmed by it all and simply lay down on a shelf, watching the others and saying nothing all day long. The teachers didn't have the energy to get him out of there and take care of him. They said he was a daydreamer and might have attention deficit disorder (ADD). But that didn't quite fit.

In the second half of his first year, we enrolled him in a public elementary school and hoped things would get better. But his time there was a total disaster, unfortunately: He couldn’t keep up and stood out because of his strange behavior – like writing on the wall with his fingers instead of using a pen in his notebook, or licking himself with his tongue. The other children thought it was odd and kept their distance. He noticed that and was miserable.

When a teacher from a special education school observed him while sitting in on his class, she suspected that he might be autistic. Her school specialized in "children's physical and motor development," and she had a lot of experience with the specific needs of children with autism. She recommended that we let him attend her school for a week.

And he really blossomed there: The children weren’t compared with each other in terms of their performance, they had plenty of quiet spaces to retreat to, and there were set routines in their daily schedule. Thomas didn't stand out there, so he relaxed. After that week, he didn't want to go back to his old school. So we immediately did everything we could to get him officially enrolled there.

Thomas was tested for autism – and sure enough, the suspicion was confirmed: He had Asperger's syndrome, which is a mild form of autism that doesn’t reduce your intelligence. People don’t use that term anymore, though; instead, autism is described as a spectrum with many different variations.

From that point on, we suddenly received more understanding and support because we could put a name to it. At first, whenever Thomas rubbed people the wrong way, I would explain to everyone that he was autistic. For example, the optometrist who got angry when Thomas didn’t behave as expected during an eye exam and didn't cooperate properly. Once he found out, the optometrist apologized for his impatience and took plenty of time for him. It was such a relief that I used the diagnosis as a protective shield for a while. Nowadays, I'm more relaxed about it and consciously decide when to mention the autism, and when not to.

To this day, set routines and predictability are very important to Thomas. We absolutely have to let him know if things are going to be different than usual. For example, if the taxi to school is going to arrive later. Then he'll need at least a day's notice to get used to the idea, and it's important to remind him several times.

He also finds it difficult to grasp certain activities or things. For example, he can't look in his closet, decide what he wants to wear, and then take out exactly one pair of underwear, one T-shirt, and one pair of pants from the closet. He looks in the closet and says there's nothing to wear. But it’s not a problem when I lay out a set of clothes for him for the day.

One time he got into major trouble. Thomas was supposed to get ready for bed on his own that evening. He was running around his room half-dressed, holding his pajama bottoms in his hands, not knowing what to do with them.

I walked in and scolded him. Then he put the pajamas on his head like a hat, and that made me angrier. I thought he was mocking me. But when I saw the desperation in his eyes, I understood. I sat down and calmly explained that the bottoms should go on his legs, not his head.

I’ve told this story many times to people who say you just have to set more boundaries. Simply setting boundaries and sticking to them doesn’t work with a child who has autism – but neither does allowing everything and just letting things happen. You need a clear structure, but you also need to keep an open mind so you can understand what’s happening inside him at that moment.

When he’s stressed out or overstimulated, Thomas still reacts in unusual ways. He starts lifting his feet and looking underneath them – as if he has lost his footing. Or he paces back and forth, pulls his hood over his head, slumps down and simply wants to disappear. Sometimes he “writes” nonstop with his index finger on the palm of his other hand, which helps him calm down.

He can only eat different foods separately and finds the thought of mixing things in his mouth, like rice and peas or pasta and sauce, very upsetting. I’ve noticed this habit in many children with autism.

Once he had been diagnosed, Thomas started one-on-one behavioral therapy for autism. He learned a lot about autism, social skills and how to communicate and interact with others. The work paid off, and by the age of twelve he was able to reflect on how he was feeling and describe it in a clear way.

During the therapy, he read a comic book by an artist who is autistic. The book explains the differences between the world of autistic people and that of others – without any judgment. He smiled when he saw that the author faced the same everyday challenges as he did, and he got some ideas. For example, taking a short break at regular intervals to avoid feeling overwhelmed. Our family adopted the idea and agreed that he could take a short 15-minute break any time he needs to. This helps him a lot, especially in restaurants or at family gatherings: He steps outside for a moment, walks up and down the street, and is much more relaxed when he comes back.

Some people think that autistic people don’t have feelings. When I told Thomas this, he got quite angry: “Of course autistic people have feelings – they just express them differently!” They have just as rich an inner life as anyone else. If they repeatedly feel misunderstood and alone, though, they may stop talking and seem unfeeling. I get the impression that their rich inner lives are just less structured and connected than other people’s are.

They also have trouble filtering impressions from the outside world. They might react to overstimulation by walking in circles or “writing” on their palms. They may also clam up completely and tune out. In these moments, I think they shut down their otherwise very open link to the outside world and recharge their batteries.

Taking in everything unfiltered and reacting in a direct and real way can also be a strength, though. Thomas’ intuition is reliable and he quickly knows what to make of a person. It’s as if he has a secret power to see into people and recognize them for who they really are.

Another strength: Once he has understood a rule and finds it logical and practical, he follows it. Always and completely. Of the three siblings, he’s the one I no longer worry about in that sense, whereas the other two sometimes want to discuss and talk their way out of things.

As a mother, it was very difficult to raise this child. At first, I didn’t understand my own child and didn’t know what to do. At the same time, I was often criticized – told what I was doing wrong and what I should change.

Our marriage wasn’t going well, either. The issue of raising our autistic son had something to do with that. His grandmother couldn’t get along with him from the start and still ignores him to this day. When she visits, she brings only two gifts for the children instead of three, as if he weren’t there.

His siblings feel torn. They help him and include him as much as they can. But they’d find life easier if their brother didn’t have autism. They feel like he gets special treatment.

But this child has also taught me a great deal: to pay attention and react immediately. Because children with autism hide so little and react so strongly, you have to stay alert – otherwise, things can escalate. And you’re forced to take a different perspective and sometimes question your usual judgments and conclusions.

Despite all the effort involved – and sometimes even despair – life with an autistic child is very rewarding. During the pandemic, for example, the school sent the children’s distance-learning materials home. Coincidentally, a parcel with shoes for the boys arrived in the post that same day.

The shoes were a bit too big, so Thomas’ father asked if we should send them back. Thomas wrinkled his nose and said with complete conviction, “Send them back, of course – I don’t like them,” but he was talking about the school materials!

Fortunately, my son has never shown any signs of mental health problems or distress, like anxiety or depression. It’s a real blessing that he’s now able to express himself very well and knows what he needs and what he doesn’t. The phase of not speaking during early childhood was very difficult for everyone.

Still, I worry about how he’ll live later on. Will he be able to manage on his own? Or would assisted living be better for him? And what kind of people would care for him then?

I wish more people understood autism. The problem is that it shows up in so many ways. Two people with this diagnosis may react and think very differently, and need different types of support.

It’s just as important not to view autism as a deficit. To me, my son isn’t just a burden – he’s a great source of enrichment, too. Promoting greater tolerance and not marginalizing people as “wrong” or “inappropriate” is also a social and political issue. This is true regarding many things – ranging from nationality or skin color, to people with physical or mental illnesses, and to those who are different socially, like people on the autism spectrum.