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A Diagnosis Names the Struggle. This Summary Named the Whole Child.

A diagnosis sorts your child into a category. A new Karolinska study asked 357 parents whether a plain-language map of how their child actually functions rang true instead. Over ninety percent said yes, and the researchers’ own premise is the part parents should hold onto.

Laura Lurns Last updated August 17, 2026 · 8 min read

A Diagnosis Names the Struggle. This Summary Named the Whole Child.

You have the diagnosis. What most families never get handed alongside it is a clear picture of how their child actually moves through a day, where they shine, where the room around them trips them up, and what to do about any of it. A study out of Sweden’s Karolinska Institutet this week put exactly that picture in front of 357 parents of children with autism or ADHD, written in plain language, and asked a simple question: does it fit? Over ninety percent said it did, for their child’s strengths and their challenges alike. The researchers’ own starting point is the part worth sitting with. A diagnosis built from symptoms alone is a poor guide to what a child needs.

TL;DR

A study in the Journal of Autism and Developmental Disorders (Hasslinger et al., 2026) surveyed 357 caregivers about a digital, ICF-based summary of their child’s functioning.
91.3% said the report reflected their child’s strengths accurately and 92.2% said the same of the challenges; about half reported greater awareness of strengths, difficulties and environmental factors.
The report is built on the WHO’s International Classification of Functioning, adapted into “Core Sets” for autism and ADHD by the Karolinska team.
The study is a cross-sectional caregiver-perception survey, not an outcome trial; at survey time only about 6% of respondents had used the report in practice.
Senior author Sven Bölte is chief executive of NeuroSupportSolutions International AB, which owns the platform’s intellectual property, a disclosed conflict of interest.

Context the coverage leaves out

What the coverage gets wrong

The headline figure traveled as clean validation: over ninety percent of parents said the summary fit, full stop. Two things sat under it that the coverage did not put up top. First, the study’s senior author is chief executive of the company that owns the platform being evaluated, a genuine conflict of interest that belongs beside the number, not in a footnote. Second, this measured what parents thought of a report, not whether the report improved anything for a child, and only around one in twenty respondents had used it in real life when they were asked. None of that makes the finding wrong. It sharpens what the finding actually is: strong evidence that a functional description of a child rings true to the people who know them best, and an argument against the deficit-only model of diagnosis, which is the idea this research quietly undercuts.

A Karolinska Institutet study asked 357 parents of children with autism or ADHD whether a functional summary of their child rang true, and over nine in ten said it did. Here are the questions parents ask most.

Common questions

What is an ICF-based summary?

It is a description of a child built on the World Health Organization’s International Classification of Functioning, adapted into “Core Sets” for autism and ADHD. Instead of leading with a diagnosis, it describes how the child functions day to day: strengths, challenges, and the environmental factors that help or get in the way. In the study, over ninety percent of parents said it reflected their child accurately.

Does a diagnosis tell me what my child needs?

Not on its own. The researchers’ own premise is that a diagnosis based on symptoms alone is a poor guide to individual support needs, because it overlooks a child’s strengths and the environment around them. A diagnosis answers “what is this called.” A functional profile answers “what do we do Monday morning,” and that is the question a support plan needs answered.

Does this prove the tool improves outcomes?

No. This was a survey of what parents thought of a summary, not a trial of whether it changes anything for a child, and at survey time only about one in twenty respondents had used it in practice. It is honest evidence that a functional description rings true to parents, and worth weighing that the senior author owns the platform being evaluated. Read it as a strong argument for describing a child by function, not as proof any single tool works.

Should I get my child evaluated for autism or ADHD?

If daily life at home or school keeps signaling a struggle, finding out where it comes from is worth doing. A screener is a starting point, not a diagnosis. If your child might need formal accommodations (an IEP or 504 plan), or you suspect a vision, hearing, or medical cause, pursue a professional evaluation too. That is the only route to those supports.

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357 parents of children with autism or ADHD read a plain summary of how their child functions each day. Over 90% said it fit. A diagnosis names the struggle; a functional map names the child.

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What happened

Writing in the Journal of Autism and Developmental Disorders, John Hasslinger, Lovisa Alehagen, Karolina Bilir and Sven Bölte tested a digital summary report built on the World Health Organization’s International Classification of Functioning, Disability and Health, adapted by the Karolinska team into practical “Core Sets” for autism and ADHD. Rather than lead with a label, the report describes how a child functions in everyday life: what they do well, what is hard, and how the environment around them helps or gets in the way. The team surveyed 707 caregivers who had taken part in earlier Core Sets research; 357 gave valid responses, most of them Swedish mothers, whose children averaged about twelve and a half years old.

The results were lopsided in one direction. Over nine in ten parents said the report reflected their child’s strengths accurately, and a near-identical share said the same of the challenges. About half reported a sharper awareness of their child’s strengths, difficulties and the environmental factors around them. “Parents described that the summary accurately reflected their child’s functioning, both in terms of strengths and challenges,” Hasslinger said, adding that the point was to make the information understandable, recognizable and usable.

Two facts belong next to those numbers, and neither was foregrounded in the coverage. This was a survey of what parents thought of a report, not a trial of whether the report improves a child’s life, and at the time of the survey only around one in twenty respondents had actually used it in practice, with a school or a clinic. And the study’s senior author, Sven Bölte, is chief executive of NeuroSupportSolutions International AB, the company that holds the intellectual property behind the platform being evaluated. The figures line up across every independent outlet that covered the study, so this is not a reason to dismiss them. It is a reason to read them as what they are.

Parents described that the summary accurately reflected their child’s functioning, both in terms of strengths and challenges. — John Hasslinger, researcher at KIND, Karolinska Institutet
Laura Lurns · Learning Success expert

The frame the science supports

The common assumption is that a diagnosis is the answer, the destination, the document that finally tells a parent what their child needs. It is not, and the researchers say so plainly. Their stated rationale is that “clinical diagnoses based on symptoms alone have been shown to be poor indicators of individual support needs, as they often fail to consider personal strengths and overlook environmental facilitators and barriers.” A label sorts a child into a category. It does not describe the child in a classroom on a Tuesday, and it is that description, not the category, that points to what actually helps. In a companion piece on the same research program, Bölte put the idea directly: how someone functions in everyday life often says more about what support is needed than the diagnosis itself.

This is the frame Learning Success has worked from for over a decade, and it is worth being precise about what does and does not connect here. The Karolinska study validates a WHO-built tool, not our assessment, and it stops at whether parents found the summary accurate and useful. What it independently supports is the principle underneath our whole approach: a needs profile is a roadmap, not a label. The field’s own reference points have moved the same way. The International Dyslexia Association’s 2025 definition now names genetic, neurobiological and environmental influences together, rather than a single fixed deficit. The brain a label describes today is not a fixed thing, and that changes how a parent reads any profile of their child.

Which is the whole reason a functional map beats a static list. As we would put it: a diagnosis describes where your child is today. It does not predict where they will be after a year of the right kind of practice. A deficit list tells you what is wrong. A map of strengths, challenges and the environment around them tells you where to stand and which way to walk.

Key takeaways

The finding: 357 parents of children with autism or ADHD read an ICF-based functional summary, and over ninety percent said it fit.
The angle: The study’s own premise is that a symptom diagnosis alone poorly predicts what support a child actually needs.
The caveat: This measured parents’ perceptions of a report, and the senior author owns the platform being evaluated.

What it means for your child

Hold the honest boundary first. This study measured perception, not results. It shows that parents recognized their child in a functional summary and found it useful for conversations with schools and clinicians. It does not show that the summary changed an outcome, and no study here does. So take from it the sturdy part and leave the rest: how your child functions in daily life is describable, recognizable, and more actionable than a category name on its own.

That points to a question you get to ask of anyone assessing your child. Not only “what is the label,” but “what does my child do well, where does the day fall apart, and what in the room is helping or hurting?” A report that answers those is a report you use on Monday morning. One that stops at a name leaves you where you started, holding a word and no plan.

One caution on the “strengths” language, because it gets oversold. Naming what a child does well is real and useful, and it is not the same as calling the diagnosis a hidden gift. The strengths in a summary like this are an accurate account of everyday functioning, hard-won and worth building on, not a consolation prize handed over in place of the hard parts. Weigh the tool’s commercial backing too, and judge any profile by whether it hands you something to do. The best test of a description of your child is that you know your next move after reading it.

The summary can help parents gain an overall picture of how the child functions in daily life, and can also be useful in discussions with, for example, schools or healthcare providers. — Sven Bölte, Professor at Karolinska Institutet
Laura Lurns · Learning Success expert

The villain here is not a person and not a study. It is the deficit-only model of diagnosis, the idea that a category name is the finish line and that the most useful thing to know about a child is what is wrong with them. Your child is more than a label, and you are the person best placed to see the whole of them, strengths, struggles and the room they sit in. A functional picture turns that seeing into a plan. The All Access membership starts with a 45-minute assessment you answer about what you see at home, and a personalized roadmap that names which skill to build first. Start the seven-day trial today.

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Your school district must evaluate your child free of charge if you ask in writing, whatever your income and whatever the outcome (US, 34 CFR 300.111 and 300.301(b)). That route takes time and answers a different question than you do. This one starts today, from what you already know.

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A screener is a starting point, not a diagnosis. If your child might need formal accommodations (an IEP or 504 plan), or you suspect a vision, hearing or medical cause, pursue a professional evaluation too. That is the only route to those supports.

References

Karolinska Institutet — Autism and ADHD strengths and needs in a nutshell
Journal of Autism and Developmental Disorders — Hasslinger et al. (2026), Autism and ADHD strengths and needs in a nutshell: Parental evaluation of a digital ICF-based assessment summary report
Karolinska Institutet — Understanding Everyday Functioning in Autism and ADHD
Medical Xpress — Parent summaries reveal daily strengths and needs in children with autism or ADHD
Scientific Frontline — ICF-Based Assessment for Autism & ADHD

Laura Lurns · Learning Success expert Writes about the learning brain for parents who want plain answers. Every article is grounded in current neuroscience and classroom practice.