Thursday, 18 July 2013

The long road to diagnosis

When I came back to my blog a couple of months ago, I briefly mentioned that my middle son had recently begun the assessment process for Autism Spectrum Disorder and dyspraxia. The last few months have been quite the emotional rollercoaster while the family adjusts to this, and the most intense hard work hasn't even started yet.

I wanted to start documenting our journey with this because it's something that you just can't imagine unless you have a child with some degree of special needs. Over the years of meeting parents in real life or getting to know them through online forums, I've encountered quite a range of special needs among children but nothing - nothing - prepares you for someone pointing to your child and saying you're going to be joining that club too.

In a way I feel awkward and embarrassed to talk about 'coming to terms' with a diagnosis for Autism. I know people whose children have serious physical and mental disabilities, people who've lost their children and others who have struggled to have children at all. To speak about 'coming to terms' with a comparatively tame issue like this seems almost disrespectful to the other parents going through heart wrenching turmoil. But then again it isn't a competition, and there isn't really any way of comparing one family's experience to another. Everything is relative, and for us this journey is really bloody tough.

Ethan has just turned 7, and since he was a baby we've known he was a bit different. He never did 'terrible 2s', didn't really have a proper tantrum until he was gone 4 years old. He's always been a bit fluffy and dippy, smiley and just away with the fairies. We said that was just his way and when his nursery teachers suggested to me in 2009 that he may be Autistic, I laughed them off and said they were getting carried away with themselves. It didn't matter that he barely spoke until he was 3, and then had a series of non-words that he repeated over and over and over. I brushed off his refusal to engage with other children and aversion to group activities, saying he was just comfortable with his own company and preferred to play alone. That it took until way past his 4th birthday to get him completely out of nappies didn't even occur to me as an issue! I'm not lazy about it, far from it  - come on, who realistically would prefer to keep buying and changing nappies over teaching a kid to take charge of their own toiletting?!

My experience of Autism Spectrum Disorder (ASD) up to that point was of a close family member who has Asperger's Syndrome (often known as high functioning autism). Somewhere in my mind I had kept an eye out for behavioural traits that mirrored what I had seen in this relative as a youngster, but seeing nothing of him reflected in Ethan, it seemed absurd for his teachers to suggest there was anything neurologically atypical about him.

The word spectrum is the key, however. Autism isn't just one set of traits; there's a vast range of behaviours that fit the bill, and people with Autism present with a complex cocktail of them. Two different people each with a diagnosis of Autism may actually have no overlap whatsoever in their traits, the spectrum is THAT diverse.

Ethan's behaviour fits in with the less well known aspects of ASD. He has no issues with making eye contact and isn't withdrawn at all (these are the stereotypical traits most people associate with Autism). He's actually completely opposite to that. If he wants to have a conversation with you, he will. If he wants to climb all over you, lift up your jumper and blow raspberries on your stomach, he will. He cannot judge people's moods by looking at their facial expressions or the tone of a voice. He flaps, squeaks, spins round in circles, and takes everything absolutely literally. I have an arsenal of stories about things he's done that seem superficially very funny, but having taken a step back to look at the bigger picture, I see now that it's all part of the suspected Autistic behaviour.

There's so much to learn as a parent with an autistic child. For one, I don't actually know if it's ok to say "autistic child" or if I should stick with "child with Autism". I don't want to define my son by his needs or difficulties. He is first and foremost a wonderful little person. The extra stuff is just one bit of him. I didn't know that it takes SO long to get a diagnosis! We started gathering evidence and speaking to professionals last December, and it looks like it will take until December this year before we have a firm diagnosis in hand. A whole entire year! Did you know it takes that long? We've seen the Special Educational Needs Coordinator at school, the school nurse, the GP, a Developmental Paediatrician and next we're on to Speech and Language Therapy, Occupational Therapy and the Child Psychologist. All these people have or will spend time with Ethan, take his history from me, watch him "perform" as it were and decide what diagnosis fits him best.

As we carry on down this path, I would like to continue sharing our experience in the hope that other parents starting out will find something useful or comforting here. It's SO huge, SO complicated and frightening - and that's just for me. I couldn't begin to tell you what Ethan makes of it all. If I ask him, he usually beams at me and asks if I'd like to play Skylanders with him. I think that means he's ok.


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