Making Neurodivergent Family Life Visible

At a summer cottage on the Swedish side of the Torniojoki river, with Finland visible across the water and Rovaniemi about an hour and a half away, Boris sat down with Trista Ramberg to talk about the kind of family support that is easy to overlook until people desperately need it. Trista works with Neppari, a Finnish project in Lapland that supports neurodivergent children, young people, parents, and whole families - often before a diagnosis is confirmed and before everyday difficulties have grown into something much harder to manage.

Boris: Where are we right now?

Trista: We are at our property, our summer house, our cottage on the Swedish side. It is right at the border between Sweden and Finland. Over there is Finland, and here is Sweden.

Boris: And the river is called?

Trista: The river is the Torniojoki.

Boris: So we are about one and a half hours away from Rovaniemi, and Rovaniemi is where you usually live?

Trista: Yes. Rovaniemi is our main home. It is in the Arctic Circle area, in Lapland, in the northern part of Finland.

Boris: Where Santa Claus lives.

Trista: Yes, of course, where Santa Claus is living. And of course me, too. Maybe I am the second-most important person if you compare me with Santa Claus. No, I am only joking.

Boris: We are here spending summer holidays, but I also know about your work, and I wanted to ask you a few questions. I find it really interesting to hear how topics around neurodivergence are handled in other countries, what kinds of support systems exist, and what is offered in Rovaniemi for families and people with neurodivergencies. That is your work, so I am looking forward to this conversation.

Trista: Of course. I can explain a little bit about how it started.

Trista: The project I work with is called Neppari, or Nepparihanke. Neppari is a short name connected to neurodivergence and families. I need to say something first: my English is not always perfect, but luckily I have Boris here to help me a little bit. Also, when we talk about these things, I really do not like the word "normal." If I could choose, I would throw that word in the trash. But sometimes, to explain what I mean, I may use it for a moment, because I want people to understand the idea.

When I talk about the people and families we support, I mean people who may be neurodivergent. They may have ADHD, be on the autism spectrum, have Tourette syndrome, or have specific language difficulties. A diagnosis is not required. Sometimes a parent, a close family member, or the child themselves may simply have a feeling that something is different, or that some abilities and difficulties do not fit the usual expectations. They do not need to arrive with papers in their hand. They can come with questions, concerns, and everyday situations that they do not yet know how to understand.

Boris: So someone may not yet know exactly what is going on, but they notice that something is different.

Trista: Yes, exactly. Something is different compared with what many people would call typical. Behind Neppari there are organizations, NGOs, that put their wise heads together. They knew that people in Lapland needed this kind of program. We work in Rovaniemi and Kemijärvi. Rovaniemi is the capital, or main city, of Lapland. These background organizations applied for funding from the Finnish government, and they received support to start the program. Then they hired people for the project, including me.

I should maybe say who I am. I am Trista, and I was hired to plan family activities. That is my main role in the program. I plan activities and support for families, and especially for different moments in family life. We meet families when they are wondering about a diagnosis, when they have just received one, when the children are growing, when the parents are trying to understand what kind of help they need, and when everyone is trying to make daily life work.

Boris: So your role is specifically to support families.

Trista: Yes, to support families in different life situations. Families may be at the point where they are asking, "Should we go to the doctor? Do we need answers? What is happening?" In Finland, and especially in some places, the lines can be very long when you need to see a doctor or receive assessments and services. But when a child needs help, they often need it straight away. Children grow very fast, and early support matters. Many times, help comes too late.

That is why Neppari tries to support families while they are waiting, or when they do not yet have official help. In Finnish, we have the word "ennaltaehkäistä." I had to search for the right English word, and Boris helped me: it is prevention, or preventive support. I always think about it like a snowball. At first, the snowball is very small. That is the moment when help is most useful. If the small snowball is not supported early, it grows and grows until it becomes huge. Later, the simple helps may no longer be enough. We try to help when the snowball is still small.

Boris: What does Neppari mean?

Trista: Neppari is a short name. In Finnish, the longer idea is "Neurokirjon perheiden arki näkyväksi." It means something like making the daily life of neurodivergent families visible, showing that these families have a place in society and that their everyday life should be seen. It is easier to say in Finnish than in English.

Many times these families are almost invisible. They may not have direct support, or they may fall between categories. They may not need very intensive services, but they do need some support, some tools, and sometimes just a small push in the right direction. They are not always seen as families with very special needs, but daily life can still be difficult. That middle place can be hard, because if you do not fit clearly into one box, you may not know where to get help.

Boris: One thing I found interesting when we spoke earlier was the question of who in the family is neurodivergent. It is not always just one person.

Trista: No, it can be multiple people. Very often, if one person in the family is neurodivergent, someone else in the family may be, too. I hear this from clients often. A parent takes a child to the doctor, and the doctor is wondering about ADHD or autism spectrum traits. Then the parent starts thinking, "I was exactly like my child, but I did not have a word for it. I thought I was just weird." That is a very common story. First the child is being assessed, and then the parent begins to recognize themselves.

Boris: So the child may be about to receive a diagnosis, and then the parent reflects on their own life.

Trista: Yes, very often. With more knowledge, many families start to understand patterns that were there for a long time. They may see that what they thought was only personality, or being difficult, or being strange, may actually be part of neurodivergence. Sometimes they realize that the same traits have been in the family for generations.

Boris: And if one parent is neurodivergent, there is a chance the other parent may be, too, because people may be drawn to others who understand them.

Trista: Yes, that can happen. It is often easier to connect with people who understand the same kind of experience. Of course, not all couples are like that, and sometimes it is very good to have a balancing partner, someone with different strengths. But it is possible that both parents are neurodivergent, or that all family members have something. It can also be that both parents are neurodivergent but the children are not.

I think ADHD is often strongly connected in families. If I remember correctly, if one parent has ADHD, there is a significant chance that a child may have it, too. I believe autism spectrum traits can also run strongly in families. But even without exact numbers, we see in practice that families often start with one child's situation and then discover a wider family pattern.

Boris: Let us talk about the problems these families usually have. What kinds of things commonly start to create difficulties, and what are you trying to help them with?

Trista: Very often we start with basic things. When a child has ADHD, for example, sleep can be a problem. It can be hard to fall asleep, and that affects the whole family. Eating can be difficult. Daily routines can be difficult, like brushing teeth, washing, getting dressed, or leaving the house. With smaller children, dressing can become a very big issue if the child is sensitive to clothes, seams, fabrics, labels, or how something feels on the body. Food can also be hard if taste, texture, smell, or the need to keep foods separate is important for the child.

We try to offer tools that make daily life a little easier. One important tool is visual material. That can be picture cards, a visual calendar, a routine board, or a sequence that shows what is happening now, what comes next, and what happens after that. For a child, it can help to touch the picture or close the picture when a task is finished. "Okay, I did this. What comes next?" The child sees the picture and maybe also the word. That is often easier than only hearing speech.

When we speak, the message can disappear, especially if focusing is hard. The parent says, "Please brush your teeth," but the child's attention is already somewhere else. Maybe there is a beautiful butterfly at the window and that becomes the most important thing in the world. It is a simple example, but it shows the idea. Visual information can stay in front of the child, while spoken information is gone as soon as it is said.

Boris: So one of the things you do is help children and families build better routines and communicate the next step more clearly.

Trista: Yes, better routines and better communication. We help parents use visual materials so that the daily situation becomes easier. Sometimes family life is chaotic because there are so many things happening at once. Parents are working, running the house, feeding the children, dealing with appointments, school, laundry, meals, and everything else. When you are trying to survive daily life, it is very easy to skip your relationship, your own needs, and even rest. Parents may forget themselves and their relationship because they are trying to keep everything balanced and make sure the children are okay.

We try to make things a little easier. Of course, families are very different. What works for one family may not work for another. We share tools and ideas, but the family chooses what actually fits their life. The goal is not to force one method on everyone. The goal is to give families enough options that they can find something that helps.

Boris: I can imagine that some families have lighter challenges and can be helped quite easily with tools like that. Are there also bigger issues that you help with?

Trista: We are often the starting point. If a family has very severe difficulties, there are other services and programs that may be needed. We are there earlier, when the snowball is still small. But we can also help families find out where to go next. In Finland, the social and health care system can feel like a secret labyrinth. You do not always know where to get help. It can be bureaucratic. You go to one service, and they say, "No, you cannot come here. Go over there." Then the next place says, "No, you have to go back." Families can get very tired and lost inside that process.

We try to be guides. We help parents understand where they may need to go, what kinds of support may be available, and what may be included for them under the law. Sometimes families are already low and exhausted by the time they reach us, because they have been trying to navigate social services, health care, school, and assessments on their own. They may not need us to solve everything. They may need someone to say, "Let us look at this together. Let us find the next step."

Boris: You brought a box with you. Can you tell us what it is about?

Trista: We often bring this kind of box to schools, groups, and meetings. Inside are different kinds of stimming tools. We try not to call them toys anymore, even though I still sometimes have to practice that. They are tools. When you need to listen, or when you do not have enough motivation, or when your body needs to move, it can help to have something in your hands. These tools can support listening, concentration, and relaxation.

We try to normalize them. You can use them in meetings. Children can use them at school. Adults can use them when they are listening to someone speak. Sometimes it is much easier to focus when your hands have something to do. I should maybe have taken one straight away because I am always a little nervous in conversations like this, and it helps.

Boris: I love them, too. When you brought the box, I wondered if you had brought it for my kid or for me. My child loves them, and I love them, too. What do you call them?

Trista: Stimming tools, or sensory tools. In our groups, we bring them for everyone. We have peer groups where people with similar experiences meet, maybe once a month. We may have a youth group, a family group, or a parents' group, and often we choose a topic for the meeting. The stimming tools are there so people can listen, relax, and be present in a way that works for them.

Boris: And then people are more concentrated, or less concentrated?

Trista: More concentrated, and more relaxed. The atmosphere becomes easier. You do not have to sit there like, "Now let us talk," while everyone looks intensely at each other. You can decide how much you want to be in the conversation. You can listen and be yourself without feeling you must be fully visibly present every second. You can choose when to speak and when just to listen. Sitting still with empty hands can feel like being in church in a very strict way. I think many people do not like that. It is much easier when your hands can do something.

Some of these tools are my favorites, especially the water ones. One time in winter I accidentally left some behind in my car, and because we are in Finland, they became cold. The young people really liked them that way. It became another sensory experience. It was not only something to squeeze or hold; it was also cool in temperature. In some situations, that can be calming.

We show parents that these tools can help when a child gets anxious, when a child has to wait at a doctor's appointment, or when a child needs to stay in one place for a little while. At school, they can help when students have to listen and learn while the teacher is talking. We also say clearly: this is not only for neurodivergent people. It can help everybody, with or without a diagnosis. Doing something with your hands can be relaxing. It can also be fun, and sometimes that little bit of fun makes the situation easier for everyone.

Boris: We can talk more about support for children later, but what are some of the smaller things you help parents with, especially if the parents themselves are affected? I am thinking about relationships, family stress, and things like that.

Trista: We have relationship camps. Very often, when you have a family, you are so much in the roles of mother and father that you forget you also have a relationship. You forget how to take care of the other person and yourself. In the camps, we try to support that. We invite professionals, for example sexual therapists, because I am not a sexual therapist myself. My role is to create and hold the group space, where people can share experiences. The professional gives lessons, exercises, and sometimes homework that couples can do together.

One homework exercise is to write the love story. Couples write about how they first fell in love and what they first loved about each other. That is important because very often the things you first fell in love with are the same things that later begin to annoy you. We need to say that out loud sometimes and write it down. When you are working, raising children, and running daily life, you can forget why you liked this person in the first place.

We also talk about different ways of showing love. For one person, love means saying, "I love you," or hearing words and feelings spoken clearly. For another person, love means helping: cleaning the house because the other person is tired, fixing something, bringing something that was hard to get, or taking care of daily tasks. Someone else may need touch, a hug, or physical closeness. Another person may not want touch in that moment and may need practical help instead. That is why it is important to talk about what love looks like for each person.

Boris: Love language.

Trista: Yes, love language, body language, and all the ways we show care. In the beginning of a relationship, when there are hormones and everything feels wonderful, we may not need to explain so much. Everything feels like love language. But later, in family life, it becomes important to say, "This is my love language. What is yours?" Some people like to receive gifts. Some like to give gifts. Some people do not enjoy gifts at all. Some want active help, some want words, some want touch, and some want space.

We often think we know what is happening in the other person's head, especially after many years together or after having children together. But we do not have a glass ball. We cannot predict everything. Even if we have been together many years, we are still growing, developing, and changing. That is why we have to keep talking. Sometimes the main thing we practice is how to talk again: how to talk directly, how to write things down when speaking is too hard, and how to discuss difficult topics. Sex, touch, and desire can be very hard to talk about, not only for Finnish people but for anyone. But it is important.

Trista: Sometimes parents come to us and they do not want advice. They just want someone to listen. They want to say everything that is wrong, everything that is difficult, everything they are tired of carrying. When they can say it out loud, it becomes lighter because it is not only inside their head anymore. It gets out of the body a little.

There are times when I feel, "I did not give this client any material. I did not give them tools to use at home. Did I do anything?" And sometimes the client says, "But you listened. That was what I needed." Being present can be more important than handing out tools. Of course, we have materials and packets and ideas, and when a family asks for them, we give them. But we try not to overwhelm people by immediately asking, "Does your child sleep too little? Do they eat too little? Do they have enough activity?" Parents are doing their best. Sometimes the most important help is that someone listens without judging and without adding one more demand.

Boris: What have you seen when families are able to manage really well and live a happy life? What are some of the things they adjust? What does a success story look like?

Trista: For me, success begins when the family can accept that some things are difficult, but also see that they have things that other families may not have. In neurodivergent families, you often have to be very present. You may have to be very direct about feelings. Parenting can be much more intense. It can feel like hardcore parenting compared with more typical parenting. But it can also give a lot.

One key is being merciful toward yourself. You do not have to be perfect. Today we are constantly watching other families. Social media gives us ideas about what family life should look like. We also carry our own images of the family life we wanted to have. When you or your partner or your child has a diagnosis, or when your family works differently, you may have to throw away the picture you had in your mind. Giving up that picture can be painful, but it can also be the best thing, because then you are open to the beautiful things your own family actually has.

For me, one of the most important supports is not only materials. It is the group. When people are in the same kind of situation, they understand each other. I can give the topic, and then the group does the rest. I make sure everyone has a chance to speak, because sometimes people get excited and one person may talk a lot. Then I might say, "Okay, now it is your turn." But the power is in people hearing, "I am not alone. Someone else knows what this is like."

Boris: That is similar to the idea behind Neurospicy Founders. There, the shared factor is that people have a company to run. In your case, the shared factor is family.

Trista: Yes, family, work, and trying to combine everything. That combination can be hard. Sometimes a child cannot be at school for the whole day. Maybe the child becomes overloaded or has a meltdown at school and needs to come home to a safe place. Then the parent has to combine working life with being at home. Workplaces should be more flexible about that, because it is not always predictable. A child may need to come home earlier, and the parent may need to respond.

That is why I was happy to hear about your group, too. Parents need spaces where others understand the same experience. It helps when you do not feel alone.

Boris: There is an overlap. People who run companies can make a difference for their employees by creating better work environments. Many of them also have families of their own, so the topics connect.

Trista: Yes, they connect very much.

Boris: How big are your group meetings usually?

Trista: They are usually two hours, once a month. When we started, we had maybe three or four people. Now in Rovaniemi we have about nine people in one group.

Boris: Do couples come together, or do people come by themselves?

Trista: Sometimes couples come together, sometimes one parent comes alone. We also have private meetings with workers and a couple, or with only one parent. It depends on what the family needs.

Boris: And do you meet with the kids separately?

Trista: Sometimes children come, sometimes they do not. It is always based on what is best for the family. We do not force one model. It is not only kids or only parents. Very often the whole family comes, and we talk with the child and the parents together. We try to understand the situation and ask, "What could help you?" Sometimes our role is to help the family figure out what the main difficulty actually is.

That can be hard. When family life is stressful, it can feel like everything is difficult. There are many levels and many things happening at the same time: work, parenting, school, possible diagnoses, appointments, sensory issues, emotions, and daily routines. Sometimes the main task is not to give a solution right away. It is to help the family find the main difficulty and choose one place to start. After that, we can offer materials or tools that fit.

Boris: What kinds of materials do you use?

Trista: It depends on the age and situation. A small child, a teenager, and an eighteen-year-old moving toward independent adult life all need different kinds of support. When someone is leaving home, responsibility grows. Parents still want to support them, but the support has to change because the young person is taking their first independent steps.

For children, we use a lot of pictures and emotion materials. We help children identify emotions: What feeling do I have now? What is behind this reaction? What things calm me down? This is important because after school, or during school, the environment can be very demanding. School is social. There are social codes, many voices, movement, noise, lights, and other sensory input. The child has to focus and learn, and the brain can become overloaded. When that happens, the child may have a shutdown or a meltdown.

Very often, when a child comes home from school, the emotions come out. The child may have been holding everything together all day. At home, where it is safe, it comes out. We try to use emotion cards and visual tools to understand what is behind those shutdown or meltdown situations. A picture can help when words are too much.

We also use visuals for rules and routines. If you write a long list of rules with many words, it can be overwhelming. We try to break information into small pieces. In Finnish, we say "pilkkoa," which means cutting something into parts. You give the first part, then the next part, then the next. If you give all the information at once, a person may think, "I do not know how to start."

For example, if you say, "Clean your room," a child or young person may know the room should be cleaned, but not know what the first step is. Should I vacuum first? Should I pick up the clothes first? Should I put toys away first? What does cleaning mean? When we break it into steps, it becomes easier: first pick up the clothes, then put books on the shelf, then put toys in the box, then vacuum. That is what we mean by pilkkoa. We break the task into pieces so the start becomes possible.

Trista: Going to the grocery store can also be difficult for families. There are candies, lights, people, decisions, smells, and many things happening at the same time. If the child is already a little overloaded after school, the grocery store can become too much. One simple tool is a shopping list with pictures. We may have a visual picture of the shopping cart or the grocery store, and then pictures of the things the family needs: milk, bread, apples, or whatever is on the list.

The child can help check the list. "Do we have milk? No, we need milk. Let us take it." When the child sees the plan, the shopping trip becomes clearer. It can also reduce conflict around candy, because the task is not "look at everything and want everything." The task is "find the items on the list." Many parents first think, "This is only a picture. How can it help?" But then they try it and say, "This really helped my child not have a meltdown when we did not buy candy." Small things can help a lot.

Boris: It is the small things that can help a lot.

Trista: Yes. Very small things can make a big difference.

Boris: Is this program unique to Rovaniemi, or do other cities in Finland have similar things? Do you know about other countries?

Trista: I do not know enough about other countries to say, but in Finland there are many kinds of supports like this. One example is Kanta-Häme Arjen Kesyttämö. I can send you the link. They were maybe one of the first projects like this, and they created a lot of material. We use some of that material because they want people to use it. The purpose is to help families.

The idea is the same: help when the snowball is small. If we support families early, maybe the snowball does not grow so big. Then families may not need very heavy support later. That also matters for society. When support comes too late, it costs more money and creates more pain. If we help earlier, when the difficulty is still small, it can prevent bigger problems.

Boris: How do you promote the program? How do people find out about it?

Trista: I came into the project halfway, so my colleague knows the beginning better. My colleague Sini Springare has been there for the whole three years. The program has now been running for three years, and now we are starting a new three-year phase. It is the same kind of work, but now the focus is even more on parents.

Children often have more support options. Of course, not always enough, but there are usually more services looking at the child. Parents can be forgotten. They are the ones trying to keep everything together, and sometimes they do not receive support themselves. In the next phase, we want to focus more on parents.

We use social media, and we go to events and community happenings where different services and programs connect. We tell people what we do. We also tell social and health care professionals in Rovaniemi, because if they have families waiting in long lines, they can tell them about us. Then those families can receive some help while they are waiting, instead of only waiting.

Boris: You say customers, but are they paying for it, or do they receive it for free?

Trista: It is free. We use words like clients or customers because they are not patients. They are not paying for the service. The materials we give are free, and the program is supported by the Finnish government.

For camps, there may be a small fee, maybe around twenty euros for a whole weekend. That can include the room, food, and the weekend program. The small amount is also there so we know people are committed to coming. But regular groups, meetings, materials, and support are free.

We also have theme days. We invite professionals to Rovaniemi to speak about subjects connected to neurodivergent family life. Sometimes the topics are about what can happen if the small snowball grows: losing trust, withdrawing from society, or needing much heavier support because the family did not receive help early enough. We may also invite parents or adults with lived experience, for example someone on the autism spectrum who can talk about growing up, working things out, and raising children.

The professionals or speakers are paid, but the clients who come do not pay. They can attend for free, and we always have snacks. Good snacks are important.

Boris: What I hear again and again is that early support is practical, but it is also emotional. It is not only about fixing one routine. It is about families feeling seen.

Trista: Yes. Families need to be seen. They need to know that their daily life matters. Sometimes they only need a small tool, like a visual routine or a sensory tool. Sometimes they need a group where other parents understand. Sometimes they need help navigating services. Sometimes they need relationship support. Sometimes they need someone who listens and does not tell them they are doing everything wrong.

The point is not to make every family the same. The point is to help each family find a way of living that works for them. A neurodivergent family may have hard parts, but it also has strengths. When the family can accept their real life instead of fighting against an impossible picture, they can find those strengths.

Boris: Unfortunately, people have to come to Rovaniemi to experience this.

Trista: Yes, of course. But you can see it is quite beautiful here. Even the Finnish side is beautiful from here.

Boris: It really is. Thank you for telling us about all this.

Trista: Thank you. I hope people get the idea. It is good work, and I hope my English was understandable.

Boris: It was, and it is inspiring. The work you are doing is important.

Trista: Thank you. And thank you for inviting me into this conversation.

After the conversation ended, Trista laughed and admitted she had been nervous. That, too, felt fitting for the subject of the interview: sometimes the most useful support is not perfect wording, perfect systems, or perfect families. Sometimes it is a calm place to speak, someone who listens, and a shared understanding that the small things are often the things that keep life moving.