Tuesday, 19 June 2012

"It is definite that your son has autism."

It's ironic how you can be desperate for a doctor to finally say those words to you, and when they do, you want them to take it back immediately. You want to pretend they never said it, and go back to the way things were- desperately seeking a diagnosis to confirm what you already know in your heart, but still having a smidge of hope that maybe, just maybe, you're being overdramatic. Maybe he's just a bit delayed.
But it's too late. You've asked the question, and you got a pretty solid answer.
"Do you think he's likely to be on the autistic spectrum?"
"I'm pretty sure of it."
"How sure are you, because I'm 99.9% sure but I'm no expert, I'm just his mum."
"I'd say it is definite that your son has autism."

We fought hard to get this appointment with the paediatric autism specialist. She is the best, and I wanted her to meet River as early on as possible. However, the appointment was scheduled for 3 weeks before his 2nd birthday. "You won't get a diagnosis on the first appointment," people said. "Definitely not before two. That's far too young to diagnose." Online autism forums are full of stories of people battling for a diagnosis for years and not getting one, stories of children being observed at Child Development Centres for weeks. I had emailed some information to the specialist a couple of months ago, and she explained that as River is so young they might have to give him a provisional diagnosis and not formally diagnose him until he's older.

The specialist started off by asking us when we first had concerns for River. She then asked what other professionals were involved and what River's current development level is. Can he hold a crayon? No. Does he recognise photos of you? No. Does he understand the word 'bath?' No. Does he say any words? No. Will he stack blocks? No.
River spent the whole time eating, and we pointed out that if he wasn't eating then he wouldn't have coped with being in the room at all. He briefly looked at her, but not for long- and when she rolled a ball to him, he just cried. He also walked around the room a lot, often on tiptoes, in his own little bubble, occasionally breaking out into a big grin or chuckling to himself.
She asked about the pregnancy, birth, how well I bonded with him as a newborn, his overall health, checked his head circumference, and asked about his diet.

She then said that he'll need to have a blood test done on a separate date just to check that River doesn't have Fragile X or any other chromosome abnormalities, as there are some that are very rare but serious, and present themselves with symptoms like autism.

I think that was when I asked her opinion. She didn't mention a provisional diagnosis at all, so I don't think there is any doubt in her mind. I asked if she thought he was high-functioning, and she said that they can't assess where on the spectrum a child lies until they are school age but said he does seem severe in some aspects. She said not to focus on that for now, and that some children who seem severe make a lot of progress in a short space of time.
She asked how we were feeling & both Tim & I got a bit teary. She said that even though we were sure of River's autism, having it confirmed is still a shock and we should allow ourselves to grieve as we'll be following a different path to what we'd envisaged.

I don't know what else to say about it just now, but I read a fantastic poem in the Cerebra newsletter yesterday that I'd like to share.

The Journey

When I looked into your eyes
You didn't hold my gaze
I knew that you were different
In those early days

You didn't crave my cuddles
You wouldn't sleep at night
I knew deep down inside
That something wasn't right

You did not respond to me
When I called your name
I felt like a failure
And that I was to blame

I longed to hear your voice
But all you did was cry
I started to believe
There must be a reason why

When you got the diagnosis
I didn't know what to do
They told me you had Autism
And it would always be part of you

We started a new journey
It had only just begun
I was still your mother
And you were still my son

Although you couldn't say the words
I knew you understood
That I would do my best for you
As every mother should

The road ahead was twisty
With many a sharp bend to turn
The path ahead seemed daunting
With so much about you to learn

Although I wasn't certain
Of exactly what to do
I soon began to realise
I would have to fight for you

Our journey would continue
We would stay on this road together
I would be right by your side
Always and forever.

By Donna Woods


  1. I've only read this first post (my bed is calling) but what a lovely poem and such an honest description of your day. Good luck for the journey ahead - different to what you expected it to be but no less amazing and unique.

  2. Oh Gemma what can I say? What a beautiful poem. This really is the start of a whole new journey for all of you. River is so lucky that he has a mum and dad who love him so much they knew when something wasn't right and made sure they got something done about it. Now you have the diagnosis you will have the tools you need to ensure his life is as fulfilled as possible. As a teacher who worked with autistic children I can tell you firsthand how much difference a diagnosis makes. A boy in my year 2 class had had awful problems at school and his mother was in denial that there could be a problem. As part of a team of professionals we fought to get a diagnosis for him. Breaking the news to his mother was one of the most difficult things I have ever done. But it changed that little boy's life. Once we learned where he was on the spectrum and what his particular strengths and needs were it became so much easier to manage his behaviour and encourage his development. Last I heard he had just passed his GCSEs with flying colours! I send you all lots of love as you start on this journey. From what I know of you from Baby Centre I know you are going to do a fantastic job as advocate for your very special little boy....Ziggy xxx

  3. Thank you for your kind words. What a lovely story Ziggy Xx