A 13-year-old student recently received her diagnosis: autism spectrum disorder with high potential. Her mother, in conversation with special educator and learning coach Barbara Hippler, shares their long journey to diagnosis, school challenges, and daily masking.
The challenges from recognition to diagnosis
How old is your child and what class does she attend?
My daughter is 13 years old and attends a classical Luxembourg high school. Only 2 months ago, she received the diagnosis of autism spectrum disorder with high potential.
What did you observe that made you consider a diagnosis?
I really became aware that my daughter was different when she was 5 or 6 years old. Even when she attended preschool, I noticed that she had severe crises in the afternoon. Especially after long days in preschool, she would scream for three-quarters of an hour over small things. Looking back, I realized that my child was already a “crying baby”. Additionally, she couldn’t adapt to daycare at all, it was terrible every time she had to go there. She had always been very selective with clothing items, for example with socks, she would only wear a certain model, a certain brand and nothing else. She also started cutting labels out of clothes very early. It was uncomfortable on her skin. From the age of two, she wouldn’t wear sweaters with cuffs because the tight fit bothered her.
She was always a very poor sleeper, even at two years old she would wake up about twenty times during the night. Additionally, my husband’s brother, who is undiagnosed, showed behavior that we associated with the autism spectrum.
Do you know what triggered the crises?
I felt very early on, when she was 3-4 years old, that it was important for my daughter to know in advance what her day would look like, whether excursions, appointments, etc. were planned. Or whether we would meet other children. The crises regularly occurred after a very long day where she had to adapt, had many social interactions, lots of people and noise around her. These crises were and are very hard for me and to this day, I can’t handle them well.
How and from whom did you get the diagnosis for your child?
Already when our daughter was 6 years old, our family regularly reached its limits and it was clear that our daughter was suffering. At the time, I was seeking psychological help for myself. My psychologist supported me in initiating an autism diagnosis. He recommended FAL (Fondation Autisme Luxembourg) as a contact point.
What did the psychologist at the Fondation Autisme Luxembourg (FAL) explain to you about autism?
The psychologist explained to me that my daughter can mask very well. When she enters a new situation, she analyzes it immediately to know what is specifically expected of her, how everything works. She sees social situations not on the emotional level, but on the factual level. This means she is a child who is very adapted outside the home, she’s not a child who screams and throws chairs. She can hold herself together very well for a limited time. During school time, she didn’t stand out. Even the mothers of her close friends, whom she regularly visited, never noticed anything. Perhaps suggestions from the school to get testing would have come if she had been more noticeable there.
What experiences did you have with FAL?
First, I had about an hour-long phone call with a psychologist. After that, I had to fill out and send back several questionnaires regarding my daughter’s behavior. After a waiting period of over 2 years, we were contacted again by FAL and were supposed to have two appointments with the child at a psychiatrist who works with FAL for testing, including conducting an IQ test.
Immediately afterward, there were two more consultation appointments at FAL with the psychologist, once without my daughter, once in her presence. During the second testing at FAL, my daughter was filmed.
Did you receive help or recommendations from FAL about what you could do?
During the diagnostic conversation, I was informed about FAL’s general offerings:
- Attend conferences
- Support at home
- Psychological help for relatives
- Support for school problems through FAL staff who assist children and parents in conversations with teachers
- Holiday activities for children and adolescents on the spectrum
- Exchange groups
Specifically, since my daughter’s diagnosis, there have only been a few relatively short-notice offers for a meeting workshop – a meeting with other parents on various topics. Also invitations to weekends in leisure parks and holiday activities.
What would you have wished for from FAL?
- I felt quite alone after the diagnosis. I would have wished to be contacted promptly by FAL, for example with a concrete plan of what support would be suitable for us as a family
- Information about psychologists who are knowledgeable about the spectrum
Which contact points, books, or resources helped you as a mother? Which would you recommend?
- FAL for diagnosis: the psychologist who was responsible for my daughter’s diagnosis was very professional and empathetic
- Instagram accounts of affected people and affected parents: bunte_herbstkinder, nikie autie, ursula estomac (all German-speaking)
School journey and support
How was primary school time for your daughter?
The first two years were hard because my daughter had a strict, little empathetic teacher. In general, there was a lot of pressure. For example, children weren’t allowed to go to the toilet during school hours and she often had wet pants. The years after that she had a teacher who worked without pressure and let the children be a bit more relaxed. Nevertheless, they had to practice a lot and prepare for tests. When practicing at home, my daughter would usually refuse to work for half an hour and have a crisis. Once she had decided to work, everything went smoothly.
Only two months ago your daughter received the diagnosis of autism spectrum with high potential. What happened at school when she had such crises?
My daughter never had these crises at school, but only at home. Outside the family, she makes a lot of effort to adapt and mask.
How is your daughter managing in high school?
Actually very well. She has friends, she has good to very good grades. What comes particularly easily to her are subjects that involve rules and logic (mathematics, grammar). With text analyses, where she sometimes has to read between the lines or analyze the feelings of the protagonists, she reaches her limits. To help her with text analyses, I coached her. So I gave her sentences with which one can express feelings in a typical way. For example with fear: “I got chills down my spine”. She remembers which sentences are appropriate in which situation and then applies them.
The aids you describe are pedagogical means that teachers could offer in their daily work with autistic children.
Yes. As soon as I offered such guides or aids to my daughter, she could solve the tasks without problems the next time.
Are there schools in Luxembourg that are sensitized to children on the autism spectrum?
I received the following list from FAL (secondary schools):
- Atert-Lycée Redange, www.alr.lu
- Lycée Bel-Val, www.lbv.lu
- Lycée Josy Barthel Mamer, www.ljbm.lu
- Lycée Nic Biever Dudelange, www.lnbd.lu
What do you wish from schools?
Currently, my daughter’s school is not informed of the diagnosis. I wish for schools and especially teachers to engage with the topic of autism and attend information events. I find raising awareness about the topic important also on the part of classmates.
What do you particularly like about your daughter?
She knows exactly what she wants and what she doesn’t want. She is assertive and doesn’t give up when she wants to achieve something. She is very funny and always has 1000 ideas, it never gets boring with her.
Thank you very much for this very open conversation. I hope we have made some readers aware of neurodiversity in girls and want to encourage understanding and sensitive action towards neurodivergent people.
February 14, 2025