A simple list of demands

 
Where have I been for the last 8 months?  Fighting.

Last summer, I should have been doing what mothers of teenagers do before a new school year. Buying school supplies. Complaining about the heat. Trying to get my daughter out of bed before midday. Arguing about screen time.

Instead, I spent it trying to rebuild an autistic teenager who was already in burnout and preparing myself for another year of fighting the people who are supposed to educate her.

This summer, I am doing it again.

My daughter is 15. She is autistic. She is academically capable.

She is sensitive, funny, complicated and sometimes extraordinarily difficult to reach when the world has become too much.

And she has been bullied.

More than once.

That last fact matters because autism does not exist separately from everything that happens to a child.

When an autistic teenager is bullied, overwhelmed, misunderstood and repeatedly required to function in an environment that causes distress, eventually something gives.
Then we call what follows "behaviour".
Or "school refusal".
Or "anxiety".
Or "lack of resilience".
Or we suggest perhaps the child is in the wrong school.

What we don't seem to ask often enough is what happened before the child stopped coping.
When support becomes another battle. My daughter's educational support is not something I invented. There are professional assessments. There are recommendations from government support officials - specialists in the area. 

And yet, I have repeatedly had to ask why she isn't being examined according to those recommendations.

Again.
And again.
And again.

At one point I was told that perhaps my daughter was not academically capable of continuing.
This was a child whose grade average was around 17 out of 20 without studying.

This was after the school failed to submit the paperwork for teachers aide support. And blamed it on me.

At another point, the same educational thinking somehow produced the extraordinary contradiction that she should be examined like everybody else — only for a longer, more gruelling period of time.

Think about that. A child struggles because of disability-related needs.  The recommendation is she is examined verbally. she is forced to participate in the written component - then a verbal where the teacher doesn't allow for 'time to think' or a rewrite or re-speech- and then says - ' Now go document everything you told me verbally'.

The accommodation becomes: make the difficult experience last longer.

And when she struggles with that, her ability is questioned.

This is what parents of disabled children learn very quickly: having a recommendation is not
the same as having it implemented.

A piece of paper doesn't walk into a classroom with your child.

A mother does that. Repeatedly. Through emails. Meetings. Phone calls. Requests. Explanations. Follow-ups to the explanations.

And eventually emails asking why the thing everybody agreed to do still isn't being done.

Then came the bullying

At one school, the bullying became bad enough that I removed her.
I escalated what was happening beyond the school.
Nothing meaningful happened.

At the next school, when bullying started again, I stayed there all day because they were too busy to talk to me. I showed up the next day with my laptop and told them I would work remotely at the school until they found five minutes to see me. I sat determined. They met with me standing up - outside of the office - in the hallway while we argued.  I needed them to understand something very simple:

My daughter was not imagining it.
She was not misinterpreting everything because she was autistic.
She was being bullied.

There is an enormous danger when a child has autism, anxiety or another condition affecting communication and social interpretation.

Adults can begin to explain events through the diagnosis instead of investigating the events themselves.

Was she bullied? Or did she "perceive" it as bullying?

Was she excluded? Or did she "misunderstand the social interaction"?
Was someone cruel? Or is she simply "very sensitive"?

Sometimes the answer is considerably less complicated.

Sometimes children are cruel to another child.

And sometimes the autistic child is telling the truth.  Particularly when other students and the teachers aide backed her claims, but it took weeks of trauma, school refusal, and me taking tie off work to be at the school o show that behind that autstic terrified teen was a pillar of strength that would not give up. politely, without yelling - but there constantly.

At one point, after the school had agreed that my daughter could sit with teachers when she felt unsafe, she approached the place she had effectively been told was safe.

One teacher sent her away.

Imagine what that teaches a frightened child.

Not resilience.

It teaches her that even the agreed safe place may not be safe.

There were also activities involving walking that we weren't told about beforehand.

For many children, that's nothing.

For a teenager who experiences significant anxiety, knowing what is going to happen can be the difference between participating successfully and becoming overwhelmed.

These aren't extravagant demands.

They are small pieces of information and predictable support.

But when they don't happen, the consequences come home with the child.

And then the family deals with them.

"Perhaps she should go to a special school"

Eventually, a principal suggested that perhaps I should send my daughter to a special school.

Again: her average was around 17/20.

I want to be very clear about something.

There is nothing shameful about special education. For children who need and benefit from a specialist environment, the right specialist school can be transformative.

But special education must not become somewhere mainstream schools suggest sending a disabled child because accommodating her is inconvenient.

Those are completely different things.

The question should be:

What educational environment does this child need?

Not:
Where can we send this problem?

My daughter did not suddenly become intellectually incapable because supporting her became difficult.

And now I am asking for the file

This week, I wrote another email.

Not an emotional email.

Not an angry email.

A bureaucratic one.

I asked for my daughter's complete educational file.

Every Teacher's and Teacher's Aide report.
Every assessment.
Every observation.
Every individualised program.
Every educational plan.
Every relevant reference to her in staff meeting minutes.
Every report, note or record concerning her.

And, particularly, everything that was passed from her previous school to her new high school.
I even specified that if documents contain other people's personal information, those details can be removed. I simply want everything concerning my child.

Why does a mother have to think this way?

Because after years of advocating, questioning, escalating and refusing to accept that every problem originates inside my autistic child, I need to know something.

What have they written about her?

What version of my daughter travels ahead of her?

When a new teacher meets her, are they meeting my beautiful intelligent daughter?

Or are they meeting a file?

And what does that file say?

Does it say that she is intelligent?

That she tries?

That she becomes overwhelmed?

That bullying has affected her?

That she needs predictability?

That she can achieve highly when she feels safe?

Or does it document every difficult moment without documenting what caused it?

And what does it say about the mother who kept sending emails?

The mother who escalated.

The mother who sat at school all day.

The mother who kept asking why official government recommendations weren't being followed.

The mother who would not quietly disappear.

I don't know.

That's why I asked for the file.

The invisible job

This is the part of parenting an autistic teenager that people don't see.

Advocacy becomes a second job.

Except there are no working hours.

No salary.

No annual leave.

No professional distance.

And the person affected by whether you do that job well is your child.

You learn educational law.

You learn acronyms.

You learn what the specialists say.

You learn what  Support should mean.
You learn to document conversations.
You learn to follow verbal assurances with emails.
You learn to ask for things in writing.
You learn not to assume that because everybody nodded in a meeting, anything will actually happen on Monday morning.

You learn to be polite while being immovable.
And all the time you are also supposed to be Mum.
Not case manager.
Not advocate.
Not investigator.
Not educational lawyer.
Mum.

Autism burnout doesn't respect the school holidays
The bell rings for the final time in June and everyone goes home.
Teachers get a break.
Schools close.
The system stops.
The autistic child doesn't necessarily stop.

This summer, my daughter is frightened about starting high school because two children connected with previous bullying are expected to be there.
The new school knows.
They have listened.
They have offered practical measures, including keeping her separated from one of the students.
I appreciate that.

I also don't have evidence that these children are actually planning anything against her.
But that isn't what burnout and anxiety respond to.
Her fear is real even when the thing she fears has not happened.
She worries that they are planning something.
She anticipates seeing them.
She carries them into August without either of them needing to be anywhere near her.

I asked her recently whether going to a different school would make any difference.

Her answer was simple.

She just wants to see new faces. That sentence has stayed with me.

Adults leave jobs because the environment has become toxic.
We change departments.
We change companies.
We move house.
We end relationships.
We tell ourselves that sometimes a fresh start is healthy.

Yet when a vulnerable teenager says she wants a fresh start, we can become strangely preoccupied with teaching her resilience.

Of course she needs resilience.

But resilience cannot mean requiring a child to remain frightened in order to prove she can survive being frightened.

The system needs to change

This is bigger than one school and bigger than one teacher.

Greece needs teachers who are properly trained in neurodivergence.

Not a seminar.
Not a PowerPoint.
Not a certificate somebody attended once.

Training that changes what happens at 10:35 on a Tuesday when an autistic teenager is overwhelmed and standing outside a classroom.

Schools need safe, supervised places during breaks.

They need adults who understand that an autistic child sitting alone isn't necessarily enjoying solitude.

They need procedures for bullying that don't automatically turn the autistic child's social differences into a reason to doubt her account.

Official recommendations need to mean something in the classroom.
Parents should not have to become compliance officers to get agreed accommodations 

implemented.

And inclusion cannot mean physically placing an autistic child in a mainstream classroom and declaring the job finished.

Presence is not inclusion.

And then there are the therapists
Schools are only part of it.
For 15 years I have looked for therapists, specialists and centres capable of seeing the individual child rather than the diagnosis, the appointment slot or the easiest intervention to deliver.

I can count the exceptional ones on one hand.
Three.
Three in 15 years.

Too often families are offered what is convenient for the provider rather than what makes sense for the child.
And when something doesn't work?
There is always another program.
Another professional.
Another assessment.
Another bill.

Parents of neurodivergent children become a market as well as a family.
We are vulnerable because we will try almost anything if somebody tells us it might help our child.

That creates an enormous ethical responsibility for the professionals taking our money.

I'm tired

There is something I didn't say enough when I wrote Pushing the Boulder.

I'm tired.

Not tired of my daughter.

Tired of fighting structures around my daughter.
Tired of writing emails that shouldn't need to be written.
Tired of asking people to follow recommendations they already possess.
Tired of explaining that academic ability and disability can occupy the same body.
Tired of proving bullying before anyone acts.
Tired of wondering whether advocating too forcefully will cause the next professional to see me as difficult — and then wondering whether that judgement will somehow attach itself to my child.
Tired of spending summer preparing her nervous system for another September.

And angry.

Because none of this is inevitable.
Autism isn't going away.
Schools will continue to have autistic children.
Some will be obvious.
Some will mask.
Some will achieve 19s.
Some will struggle academically.
Some will talk constantly.
Some won't talk when overwhelmed.
Some will desperately want friends and have no idea how to keep them.

They don't need teachers to become therapists.
They need adults who are trained enough to recognise what they're seeing, humble enough to listen when they don't understand, and responsible enough to act when a child says she is unsafe.

And parents shouldn't have to push a boulder uphill every single year to make that happen.

My daughter starts Senior High School soon.

I don't yet know exactly where that beginning will be.
I do know what I want for her.

Not special treatment.
Not protection from every difficult person she will ever encounter.
Not a world rearranged around her autism.
I want her educated.
I want her safe.
I want agreed accommodations actually provided.
I want adults to believe that an autistic child can be both vulnerable and intelligent.
I want bullying investigated before her diagnosis is used to explain it away.

And I want her next school to meet my daughter before it meets somebody else's version of her.

After fifteen years, these don't feel like unreasonable demands.

They feel like the minimum.