Excellent… When He Is being a student

The Forgotten Siblings in the Autism Journey

My daughter, Amira, joined a mainstream private school after being assessed personally by the school principal. When the assessment was over, he said something that has remained with me ever since: “Amira does not lack ability. Quite the opposite. Her classmates may actually be the ones who benefit from having her among them, given how intelligent she is, Alhamdulillah.”

Amira had started kindergarten later than usual because she had previously attended a specialised centre for People of Determination. As luck would have it, she and her younger brother ended up in the same classroom that year. Finding a school for Amira had not been easy; many schools had refused to accept her, as is the case for so many autistic children.

One day, I asked the teacher how Amira was doing academically.

“Amira is excellent,” she said.

Then I asked about Abdulrahman.

Her answer was:

“Excellent… when he is being a student.”

Seeing the confusion on my face, she quickly explained what she meant:

“Abdulrahman behaves like a father, not a student. Most of the time, he is taking care of Amira. He takes out her books, makes sure she has completed what she is supposed to do, checks whether she has eaten her lunch, and remains attentive to her throughout the day.”

How could something has been so clearly in front of me, yet so invisible to me at the same time?

I went home thinking deeply about the teacher’s observation, and I questioned myself a great deal. Without even realising it, I had been placing a burden on a small child that was far greater than his age should have required him to carry.

Yes, it is beautiful to instil in our children a sense of love and responsibility towards their siblings, and to raise them not to see their brother’s or sister’s differences as a reason to distance themselves. But there is a very fine line between teaching a child to love and care for a sibling, and making that child responsible for them.

We have no right, in the name of responsibility, to take away a child’s childhood.

From this space, and in the first article I write for the AuTie blog, I want to draw attention to a group that I believe we do not talk about nearly enough: the siblings of autistic children.

These children live the autism journey alongside us, without carrying the diagnosis themselves.

They hear the screaming. They witness meltdowns and emotional outbursts. They may see a sibling hurt themselves or, unintentionally, hurt those around them. They may wake during the night because of their sibling’s sleep difficulties. Family plans may change at the last minute, or an outing they had been looking forward to may suddenly come to an end because of an unexpected crisis.

And sometimes, children learn far too early not to ask for things, not to complain, simply because they do not want to add to the burden already carried by their mother and father.

They may, through no choice of their own, become the family’s “understanding child” — a description that sounds admirable, but may conceal a child who has realised far too early that their own needs come second.

I do not believe that any mother or father living this journey can claim to have always achieved the right balance between their children. I am the first to admit that I have not.

Not because this neglect is intentional, but because autism — particularly in cases requiring substantial support — can impose an extremely demanding reality on a family: appointments, therapy sessions, schools, assessments, constant anxiety, behavioural crises, sleep disturbances, and even fears about the future that never seem to end.

How Do We Restore Some of That Balance?

More than anything, siblings of autistic children need permission to be children.

A brother should not be expected to become an assistant therapist, nor a sister a permanent supervisor. A child should not become the family’s “backup plan” whenever someone is needed to watch their sibling.

They can help, of course. They can love, protect and participate. But the fundamental responsibility must remain with the adults, who must never lose sight of the brother’s or sister’s own need for time that belongs to them alone.

We may not always be able to give all our children exactly the same amount of time. But we can give each of them time — even if it is brief — during which they feel that, for that moment, they alone are the priority. A short outing, a conversation before bedtime, a weekly breakfast, or even half an hour in which we do not talk about their sibling, their therapy or their difficulties.

Time that says, without words: You matter to me just as much as your sibling does.

It is equally important that we allow them to express the feelings that we ourselves may be afraid to hear.

A child may say:

“My brother is so annoying!”

Or:

“I’m upset because he ruined my birthday.”

Or even:

“I’m tired of him!”

We should not make a child feel guilty for having these feelings. A person can love a sibling deeply while also feeling angry with them or exhausted by the circumstances surrounding them. Conflicting emotions do not mean an absence of love.

In more difficult situations, when a child witnesses self-injury, violence or repeated meltdowns, it is not enough to simply tell them:

“Your brother doesn’t mean it.”

We must not forget that, from that upset child’s point of view, they may have witnessed something frightening.

We therefore need to explain what happened in language appropriate to their age and understanding. We need to reassure them that their safety is our responsibility — one we can never compromise — and establish a clear plan at home for what they should do during a crisis: Where should they go? Which adult should they turn to? And when should they not intervene?

A child should never, for example, have to place their body between a sibling in crisis and the rest of the family.

The Responsibility Does Not Belong to the Family Alone

I believe we need to go further than simply offering advice to mothers and fathers.

Siblings of autistic children deserve to be recognised as a distinct group whose circumstances warrant careful consideration by schools and health and social institutions. They have every right to be included within the support system, rather than being treated as individuals who simply exist in the background.

This support can take different forms that do not cause embarrassment or make them feel singled out, but instead reach them through the existing support and follow-up channels within schools.

The same centres that provide therapeutic services for autistic children could also organise activities or group meetings for their siblings. Regular gatherings of this kind could allow them to meet other children living through similar experiences, which could have a positive impact on their wellbeing.

I have also noticed that family support programmes offer many courses designed to teach parents the skills they need to support their autistic children. These programmes could also include guidance sessions that help parents recognise signs of psychological and emotional stress in their other children.

And I return to schools, because I believe they are particularly well placed to support the siblings of autistic children. I hope the Ministry of Education will consider training social workers to better understand the circumstances of these students, particularly when situations at home begin to affect their sleep, academic performance or school attendance.

Government and community organisations could also support reduced working hours for parents, enabling them to provide care and attention to other members of the family. Giving parents shorter working hours does not merely ease the pressure on the parents themselves; it may also give them the opportunity to spend meaningful time with their other children.

And that could make an enormous difference.

Because when we support a family raising an autistic child, we are not supporting one individual. We are protecting an entire family system.

Abdulrahman Did Not Need to Be a Father

Years have passed since the teacher said those words, yet they still come back to me:

“Excellent… when he is a student.”

Today, I think about them differently.

The teacher was not simply praising Abdulrahman. She was drawing my attention to a part of our lives that I had failed to see.

He was a little boy who loved his sister so deeply that he had taken some of the responsibility for her onto his own shoulders, without anyone ever explicitly asking him to do so.

And my role was to tell him:

Thank you for loving her.

Thank you for looking out for her.

Now go and play.

I want our children to grow up loving their autistic siblings, not feeling that their own lives have been committed to caring for them.

We want them to stand beside their siblings because they share a bond of love and family, not because they were raised from childhood to believe that they are next in line to take responsibility.

And perhaps, every now and then, we as mothers and fathers need to ask ourselves one simple question:

While we are doing everything we can to support our autistic child… who is supporting their siblings?

I believe the answer should not remain the responsibility of the family alone.

And this is one of the conversations I hope we can begin here, at AuTie.

Aysha AlKaabi
Founder & CEO – AuTie