Part 20 | Because we are family, there are things we cannot understand about each other.
— Misunderstandings and mutual support among parents, siblings, and family.
Part IV | Thinking about life and family from childhood
Understanding Developmental Disabilities/ASD Series | Part 20
When you feel the most distant from those who are closest to you.
“Why don’t you understand me?”
Have you ever felt that way toward your family?
Parents worry about their child’s future.
Children want their current struggles to be understood.
Siblings want to be seen for who they are, too.
Even when living in the same house, the scenery we see is slightly different.
Even between people with developmental disabilities such as Autism Spectrum Disorder (ASD) and their families, thoughts can cross paths due to differences in communication and difficulties in daily life.
However, there is something I want to tell you first.
Just because you are family does not mean you can understand each other without saying a word.
And just because there are things you cannot understand about each other does not mean there is no love.
What is important is not for one person to keep enduring, but to know each other’s troubles and wishes, and to think about how to live together.
This time, we will think about the misunderstandings and mutual support of families from the perspectives of the individual, parents, and siblings.
1. A parent’s “worry” can sound like “rejection” to a child.
“It’s time to clean up.”
“How long are you going to keep playing games?”
You will be in trouble if you cannot learn to live on your own in the future.
Behind words like these, there may be a parent’s feelings of concern for their child’s future.
However, the person being told may interpret them in a different way.
I’ve been scolded again.
No matter what I do, I’m no good.
I’m trying my best, but I’m not being recognized.
For example, some people with ASD find sudden changes to schedules burdensome, or find it difficult to understand multiple instructions at once.
Also, for people with ADHD traits, it can be difficult to start cleaning up or to decide on the order of tasks to work on.
Of course, there are individual differences in how these difficulties manifest.
What is important is not to assume from the start that the reason they couldn’t do something is because they are unmotivated or spoiled.
For example,
Clean up right now.
Try changing that phrase to,
First, let’s put the books on the desk back on the shelf.
Try changing it into a concrete action.
Or,
How many times do I have to tell you?
Before asking that,
Let’s think together about where to start.
Try saying that instead.
For some people, these adjustments make things easier to approach.
However, changing how you speak to them will not necessarily solve everything. When they are tired or experiencing significant sensory overload, you must prioritize rest and environmental adjustments first.
What a parent wants to convey and what a child actually receives are not always the same.
Realizing that difference might be the first step toward reducing misunderstandings.
2. “They won’t talk to me” does not mean “they have nothing to say.”
They were quiet at school.
The teacher also said there were no particular problems.
Yet, they suddenly become moody upon returning home.
They don’t answer when spoken to.
They cry or get angry over trivial things.
Families may be bewildered by such behavior.
One possibility is that they have been working hard to fit in with others at school, and their exhaustion is manifesting after they get home.
It may also be related to sensory overload such as noise, anxiety, lack of sleep, pain, or physical discomfort.
NICE, which creates health and care guidelines in the UK, also recommends checking a wide range of factors—such as communication, physical health, the surrounding environment, and life changes—when addressing strong stress reactions or challenging behaviors in children with ASD.
However, you cannot jump to conclusions about the reason just by looking at their behavior at home.
“Did something bad happen?”
They may not be able to answer that question right away.
This is because the individual themselves may not be able to explain their feelings or physical state well.
In such cases, it may be better to ensure they have time to rest quietly rather than forcing them to talk.
If talking is difficult, there are also ways to use text, pictures, or choices.
For those who have difficulty expressing themselves through speech, it is important to consider methods that suit the individual, such as gestures, eye contact, or communication devices.
“They won’t talk” and “they have nothing to say” are not the same thing.
Not rushing for a response is also a way to value the other person’s thoughts.
3. Is a sibling’s “I’m fine” really okay?
In families raising children with developmental disabilities, time and attention can easily be directed toward the child who needs support.
Medical appointments, consultations with schools, and daily life support.
For families, even just coordinating schedules is a major task.
In such situations, a sibling might say, “I’m fine.”
However, there is a possibility that there are other feelings hidden behind those words.
“Actually, I want you to listen to me more.”
“I want to be pampered too.”
“Why am I the only one who has to endure this?”
On the other hand, there are also those who cherish their siblings with disabilities and enjoy spending time with them.
A systematic review published in the academic journal ‘JBI Evidence Synthesis’ in 2026 integrated 34 qualitative studies dealing with the experiences of siblings of people with ASD.
What was reported there was not just the burden.
While there was intimacy, affection, and joy, there were also psychological burdens, roles within the family, worries about the future, and experiences of not receiving sufficient support.
However, this study qualitatively analyzed experiences and does not indicate that the same effects occur for all siblings. It is also necessary to note that many of the studies are concentrated in North America and Europe.
What is important is not to pigeonhole a sibling’s feelings into a single narrative.
The feeling of loving one’s family and the feeling of feeling burdened can exist at the same time.
Even if you cherish your siblings, it is okay to want time for yourself.
There are days when you just want to play.
There are days when you want to go out with friends.
There are days when you want to be absorbed in what you love without thinking about your family.
That is not being cold-hearted.
The Japanese Developmental Disability Navi Portal also introduces the importance of psychological support for siblings and opportunities to connect with people in similar situations.
And there is one more thing we must not forget.
If someone is taking on excessive caregiving responsibilities for their family, affecting their studies or friendships, they may need support as a young carer.
In June 2024, young carers were explicitly recognized under Japanese law as subjects for support by national and local governments.
Helping with housework itself is not the problem.
What is important is whether it is placing a significant burden on the child’s own life and development.
Siblings have their own lives, separate from the role of supporting someone else.
“I care about you, too.”
We should convey that feeling not just through words, but by providing time and choices for them as individuals.
4. Even parents have days when they get tired.
Support for the individual with a developmental disability is very important.
However, we must not forget that parents and caregivers are human beings, too.
Coming home after work, doing chores, and responding to communications from school.
Checking the schedule for the next day, and continuing to worry even at night if there are concerns.
In the midst of such days, it is possible to lose one’s composure.
The UK’s NICE recommends that when providing support for children and young people with ASD, one should assess the support needs of the family themselves, including parents and siblings, not just the individual.
This is an important perspective.
It is not always just the person with a developmental disability who needs support.
Family members themselves may also need opportunities for consultation, rest, and support in their daily lives.
In Japan as well, programs such as “Parent Programs” and “Parent Training,” where guardians learn to understand their child’s characteristics and how to interact with them, are being implemented in various regions.
These are not intended to blame the parents.
They are initiatives designed to deepen understanding of the child and to consider environmental adjustments and ways of interacting.
Of course, these programs alone will not solve every problem.
Time for parents to rest themselves and mechanisms to support housework and childcare will also be necessary.
Those who support their families also have the right to be supported.
It is okay to ask for help before you become completely exhausted.
5. Because you are family, sometimes distance is necessary.
Must family members always be together?
Must they talk about everything?
Must they always get along?
I do not think so.
There are people who want to be alone in a quiet place.
There are people who find communicating through text easier than through conversation.
Even if they live in the same house, there are people who want to cherish their own time.
Once they become adults, they may want to decide for themselves how to interact with their parents and how to participate in support.
The UK NICE guidelines for adult ASD recommend that you first discuss with the individual whether to involve family in their support and how they would like them to be involved.
Even when the individual wishes for family involvement, it is recommended to discuss how much personal information should be shared.
This is not to distance the family.
It is to value the individual’s wishes and privacy.
Conversely, it does not mean that the family must take on all the support.
The individual’s wishes and the scope of what the family can realistically handle can be considered with the inclusion of external supporters.
And, if there is violence or abuse within the family relationship, there is no need to force a reconciliation.
It is important to first ensure safety and connect with appropriate consultation services.
Valuing your family and sacrificing yourself for your family are not the same thing.
A comfortable distance can be different for everyone.
6. Four questions you can try as a family.
So, what can be done to reduce misunderstandings in the family?
What is important is not to look for “who is to blame” from the start.
For example, let’s consider a family where arguments occur during morning preparations.
“Why can’t you do it faster?”
“How many times do I have to tell you?”
Instead of blaming each other like that, try thinking about the following four questions.
The first is, “What is happening?”
Are they stuck at choosing clothes?
Is it difficult to move on to the next action?
Are the morning light or sounds becoming a burden?
First, clarify the situation that is causing trouble.
The second point is, “What does the person themselves want to do?”
“Do you want me to prepare with you?”
“Would it be better to write the schedule on paper?”
“Do you want to rest a little?”
Confirm their wishes in a way that is easy for them to answer.
The third point is, “What can those around them change?”
Prepare the night before.
Make the morning schedule easier to understand.
Give instructions one at a time.
Review the time family members spend helping.
Do not just ask the person to change; also adjust the environment and procedures.
The fourth point is, “Who else can we rely on besides the family?”
School teachers, consultation support staff, medical institutions, and local government consultation counters.
Do not try to solve everything within the family; look for necessary support.
A schematic diagram for explaining how to organize family misunderstandings. It shows four perspectives: confirming the situation, the person’s will, environmental adjustment, and external consultation. This is not a clinically verified treatment procedure or diagnostic criterion.
These are not ways to solve everything at once.
If things do not go well, look back at what was burdensome and think of another way.
Support is not something that ends once it is decided.
It is something to be reviewed according to the person’s growth and the family’s situation.
7. You don’t have to carry the burden alone as a family. There are places to consult in Japan as well.
Article 13 of Japan’s Act on Support for Persons with Developmental Disabilities stipulates the duty of prefectures and municipalities to provide consultation, information, advice, and support for mutual aid among families of persons with developmental disabilities.
Furthermore, Article 14 defines the consultation and support services provided by Developmental Disability Support Centers.
Developmental Disability Support Centers accept consultations not only from the individuals themselves but also from their families and those around them.
According to the Developmental Disability Navi Portal, you can consult even at a stage where a diagnosis has not yet been made.
Depending on the content of the consultation, they may be able to connect you with medical institutions or local support organizations.
One way to start is to inquire at your local municipality’s disability welfare division, child-rearing consultation desk, or a Developmental Disability Support Center.
The support available and the conditions for application vary depending on the region and the family’s situation.
Just because you consult does not necessarily mean you can immediately use the services you desire.
Even so, it serves as an entry point for society as a whole to think about issues that families cannot solve on their own.
The individual themselves can also consult directly.
It is perfectly fine for siblings to consult about their own worries.
It is also important for parents or caregivers to consult about their own exhaustion or anxiety.
Seeking support is not a failure as a family.
It is one option for protecting the lives of your family.
8. Families cannot always understand each other.
Parents have their own lives.
Siblings have their own lives.
And the individual with a developmental disability also has their own life.
Even if you live in the same house, your feelings and what you desire are different.
Therefore, there will be days when your opinions do not align.
There will be times when you are hurt by the other person’s words.
There may be things that remain impossible to understand.
Even so, not being able to understand everything does not mean you cannot cherish the other person.
“I may not understand it myself, but I see that it is painful for you.”
Accepting it in that way is also a step toward understanding.
It does not have to be that one family member is always the one providing support.
It does not have to be that one person is always the one enduring things.
And, for things that cannot be solved by the family alone, it is okay to seek support from society.
I believe that what is important for a family is not always having the same feelings, but being able to respect each other’s dignity even while having different feelings.
Just because you are family does not mean you will always understand each other.
However, you can gradually find ways to try to understand one another.
I hope that such a relationship will lead to a safe place for the individual, their parents, and their siblings.
Concluding Part IV
From Part 16 to Part 20, we have considered difficulties that went unnoticed in childhood, the differences between ASD and ADHD, mental health, daily life, and relationships with family.
What they all have in common is the importance of thinking about developmental disabilities not just through diagnostic labels, but through the lens of each individual’s life.
In the next Part V, we will consider the difficulties that arise in school life and interactions with society, as well as options for support.
Medicine provides evidence.
Education expands possibilities.
Welfare supports daily life.
And, the protagonist of life is the individual themselves.
Moving forward, I would like to continue thinking together about how to connect global research and support concepts with daily life in Japan.
List of Sources
This article was created by referring to the following public documents, clinical and support guidelines, and academic research.
[1] NICE (National Institute for Health and Care Excellence)
Autism spectrum disorder in under 19s: support and management. Clinical Guideline CG170.
Published August 28, 2013, last updated June 14, 2021.
Regarding ASD support for children and young people, environmental adjustments, decision-making by the individual and their family, and support for families including parents and siblings.
https://www.nice.org.uk/guidance/cg170/chapter/recommendations
[2] NICE (National Institute for Health and Care Excellence)
Autism spectrum disorder in adults: diagnosis and management. Clinical Guideline CG142.
Published June 27, 2012, last updated June 14, 2021.
Regarding self-determination for adults with ASD, family involvement, information sharing, and support for families.
https://www.nice.org.uk/guidance/cg142/chapter/recommendations
[3] Smrčková A, Kantor J, Sedláčková D, et al.
Experiences of having a sibling with autism spectrum disorder: a qualitative systematic review.
JBI Evidence Synthesis. 2026;24(10):1947–2014.
Published online August 18, 2026.
DOI: 10.11124/JBIES-25-00454
https://pmc.ncbi.nlm.nih.gov/articles/PMC13649267/
A systematic review of 34 qualitative studies addressing the experiences of siblings of individuals with ASD. Covers both positive experiences and difficulties, as well as support needs.
[4] Wolff B, Magiati I, Roberts R, Pellicano E, Glasson EJ.
Risk and resilience factors impacting the mental health and wellbeing of siblings of individuals with neurodevelopmental conditions: A mixed methods systematic review.
Clinical Psychology Review. 2022;98:102217.
DOI: 10.1016/j.cpr.2022.102217
https://pubmed.ncbi.nlm.nih.gov/36368218/
A review of 81 studies on siblings of individuals with neurodevelopmental disorders. Covers risks to mental health, resilience, and variations in research.
[5] Developmental Disability Navi Portal
“Connections between parents and family members”
Published August 19, 2021.
Regarding interaction between families, parent mentors, and sibling support.
[6] Developmental Disability Navi Portal
“Regarding programs available to parents and family members”
Published August 19, 2021.
Regarding parent programs and parent training.
[7] Children and Families Agency
“Regarding Young Carers”
Information on the definition of young carers, the legal amendment of June 2024, and support.
https://www.cfa.go.jp/policies/young-carer
[8] Laws and Regulations Published by the Ministry of Health, Labour and Welfare
“Act on Support for Persons with Developmental Disabilities”
Act No. 167 of 2004.
Article 13 (Support for Families, etc. of Persons with Developmental Disabilities), Article 14 (Developmental Disability Support Centers, etc.).
https://www.mhlw.go.jp/web/t_doc?dataId=83aa6591&dataType=0&pageNo=1
[9] Developmental Disability Navi Portal
“I want to know where I can go for consultation”
Published July 29, 2021.
Regarding Developmental Disability Support Centers, municipal consultation counters, and consultation before diagnosis.
Thank you for reading until the end.
I hope this article has been of some help to you.
#DevelopmentalDisability #ASD #AutismSpectrumDisorder #UnderstandingDevelopmentalDisabilities #FamilySupport #SiblingsOfDisabledChildren #SiblingSupport #Parenting #ParentTraining #YoungCarer #DisabilityWelfare #SpecialNeedsEducation #IndividualWill #Neurodiversity
