The 3 Years Before Diagnosis: When I Thought I 'Had to Raise Her Normally'

My daughter was diagnosed with ASD
the year she entered kindergarten.

At that time, rather than feeling anxious or confused,
I remember feeling relieved,
thinking, 'So that’s what it was.'

As for why I felt that way...

I started to feel that something was different about my daughter's development
when she was over six months old.

Whether it was rolling over, crawling, pointing, or speaking,
everything was slower for her compared to other children,
and she was marked as 'needing observation' at her 18-month checkup.

The roughly three years from then until she was diagnosed
were a very long and painful time for me.

'Let's wait and see.'
'Try not to worry too much about it.'

Even when doctors and public health nurses told me that,
my heart was filled with the thought,

'How am I supposed to raise this child?'

For example, when there were things she couldn't do like other children.


Should I make her try a little harder?

Or should I help her out?
Would lending a hand be for her own good?

Or would it be robbing her of an opportunity to grow?
Should I raise her as a 'normal child'?

Or should I raise her as a 'child with certain traits'?
Because I didn't know anything yet,

I was constantly wavering between the two.

If I were the me of today, I would tell my past self this:

'Whether there is a diagnosis or not,
it's okay to go at her own pace.'

At one point before she was diagnosed,
there was an event for local children
where they could play freely barefoot in the grass and dirt,
getting covered in mud.

But even though she was barefoot,
my daughter just stood there.
Let alone playing in the mud, she wouldn't touch the dirt with a single finger.

Perhaps she didn't like the prickly feeling of the grass either,
as she kept begging to be held.

Even so, I tried making mud dumplings for her to hold,
or walking on the grass
and calling out, 'Come here, come here!'
But that day, my daughter

hardly ever smiled.
Thinking about it now, my daughter had sensory sensitivities,


she didn't like the feel of the dirt or grass,
and I think it was just an unpleasant time for her.
But back then, I was convinced that

'As long as they say to wait and see,

I have to treat her like a normal child.'
'Even if it seems like she struggles with something,

if it's something everyone else can do,
I have to make her do it.'

Looking back now,
what I wanted back then
wasn't a diagnosis or lack thereof, but for someone to tell me,

'If she doesn't like it, you don't have to force her to do what everyone else is doing.'
'If it's difficult for her, it's okay to help her.'

'It's okay to choose a different way than everyone else.'
I think that's what I wanted someone to say to me.

Of course, having a diagnosis
gave me more clues to understand my daughter.
That my daughter has her own way of developing.

That there are reasons for the things she struggles with.
There are many events that were just dots before

that finally connected, making me think, 'So that's why.'
But just because she was diagnosed
didn't mean I understood everything about her.

Even with the same ASD diagnosis,
the things they struggle with, the things they are good at,

the environments where they feel safe,
and the support they need
are different for every single person.
In the end, what was necessary
was not to look at the diagnosis name,

but to look at 'that child' right in front of me.

That is why I don't think that
accommodations tailored to individuality
are only for children who have a diagnosis.

Perhaps some people might worry,

'Is it okay to provide special accommodations
when they haven't even been diagnosed yet?'

But providing accommodations for things they are struggling with

and applying a diagnostic label to that child are two different things.
'This child struggles with this.'

'It seems easier for them if we do it this way.'
Adjusting to the situation right in front of you like that

is not the same as giving that child a diagnosis.
After that, they might get a diagnosis,

or they might not.
Whichever it is, I don't think it's a mistake

to have made adjustments at that time
to make things easier for the child.
'They hate clothing tags.'

'They are afraid of loud noises.'
'They find it hard to enter new places.'
If you make them endure these kinds of difficulties

until they get a diagnosis, and only then provide accommodations,
both the parent and the child
will spend that time in pain.

Just look and see,
'This child is struggling here.'
Instead of endurance, make things easier through adjustments.

That is not coddling,
but I believe it is an important form of support
for that child to grow up in safety.