ASD (the D is for Diagnosis)

In 2010 my third son was diagnosed with ASD (Autism Spectrum Disorder). That was the start of my journey…

A brief history lesson

I’ve got three boys, my ASD beauty is the youngest of the three. I always knew there was something a little different about him. As a baby, he didn’t enjoy the cuddles and kisses and the massages that the other two had. In fact, he seemed to rather dislike physical contact of any kind. That said, for the most part he seemed relatively typical. Until, like so many others, he hit 18 months old and seemed to pretty much disconnect himself.

Gone was the eye contact. Gone was any attempt at verbal communication. Gone was the slightest interest in anything outside of his head (or a screen/monitor).

So I did what any parent would do in my position

I hit the internet. Of course. I did a HUGE amount of research. I’d heard of autism, but my perception was a very narrow viewpoint. I had no idea that there was such a wide spectrum: Aspergers, Dyslexia, ASD, ADHD, ODD… it was quite an informational journey.

Don’t hate the player, hate the game

One thing that seemed tragically clear throughout my research journey, was just how hard it is to get help or support or advice or diagnosis for kids like mine. I was reading many stories of people whose children were in secondary school and clearly struggling but simply not getting the support they needed. I realised that an early diagnosis was crucial in order to access the professional support we required.

At 36 months old I was engaged with the health authority via my GP and was advised of a minimum 24-month wait for access to the relevant health professionals in order to START the process of diagnosis. This didn’t feel acceptable to me, not at all. Like any Mother, I was ready to go into battle to get my child the help he needed, and I devised a rather cunning plan.

There was an excellent Montessori nursery close to our home and I decided to register him there. I filled out all the forms, which included a health questionnaire, obviously my little one had no diagnosed medical conditions so I left that blank.. I dropped him off for his first three hour session — I’ll share the horror of that at a later date — ran back home and cried until it was time to pick him up. As soon as I walked in the head teacher looked at me and said: “Would you object to us referring him to the education authority as I think he could possibly do with some additional support”. Bingo. The pincer movement had begun. The Health and Education authorities were now both engaged.

12 months later and we were already at the final hurdle — D-Day.

September 2010. The CDAC was now — the end of the line or the start of the journey depending on how you perceive it. The CDAC/CDC = Communication Disorder (Assessment) Clinic was the last in a year long series of tests, observations and interviews at home, at the hospital and at his nursery.

Our case was passed up to the consultant paediatrician, after the earlier assessment by Dr N who thought that a more senior colleague should make the final diagnosis — at this time Fragile X was being considered…

By now I had coordinated a battery of tests and interviews and had harangued both the Education and Health Authorities to distraction. I was relieved that this day had finally come. I just wanted an answer, I needed to know what I was facing.

The Waiting

As we sat waiting for the team to call us in I made a mental list of his current strengths/deficits against the core triad of impairments. Some days he was more autistic than others, something I referred to jokingly as the ‘autistic pendulum’. Although he had made a lot of progress with his IEP (Individual Education Plan) crafted by the SALT and local SENCO and implemented by the nursery with support from us, he was ticking a lot of boxes. Enough, in my layperson’s opinion, to warrant a diagnosis but with that diagnosis being applied according to the ICD the best I could envisage was PDD-unspecified which isn’t quite as encompassing (or useful as it happens) as the (U.S.) DSM-IV-TR equivalent of PDD-Not Otherwise Specified.

Again, it’s not the label that’s important, it’s the help and services a diagnosis unlocks as well as paving the way for a choice between mainstream school or an ‘MLD’ school (for children with moderate learning disorders).

I listed the characteristics he still exhibited under the social / communication/repetitive behaviour headings and wondered if I’d get a chance to present them to the consultant.

The Interview

Little one headed off with a SALT and his special needs health visitor who ran through a series of tests, meanwhile his Dad and i were interviewed by the consultant.

This lady really knew her stuff (I don’t know why I’d worried!) and made the point about the diagnosis being made according to ICD criteria, as the morning progressed and we made some gentle points about his imperative/declarative pointing and his echolalia and just like the previous paediatrician she actually welcomed these comments so we went ahead and talked through our list and unburdened ourselves about the Fragile X fears. This is where everything started going really well.

The consultant said that she felt he warranted an autism diagnosis but still had to go through the processes with her colleagues. She said that she would immediately organise a series of blood tests to rule out Fragile X, any form of thyroid problem as well as a creatine kinase test to rule out any form of muscular dystrophy. The last two tests are simply because he was small for his age but mostly just to give us something else to worry about, I’m sure.

Eventually we were sent out while the consultant and the rest of the team deliberated, cogitated and digested the morning’s sessions. A little over an hour and some anxious coffees later we were called back in.

The Diagnosis
The jury had considered and was about to deliver its verdict. And there it was, written on a piece of paper. Right there, in black and white (and slightly pale yellow due to crappy phone camera).

We could hardly believe it. Straight up plain and simple ASD. This piece of paper was in a blue folder which unlocked the keys to the city.

With immediate effect he was under the supervision of the Early Years team who would mentor him through pre-school up to age 5. In addition he secured regular scheduled speech and language therapy (rather than observation) and access to sign language classes, picture exchange systems and a whole set of interventions. But more about those later ;)

Welcome to the start.

So, that was the beginning of my journey. Roll ahead 8 years and I am currently sitting beside a pool on holiday with my youngest two. And I’m doing something that, back then, I never dreamt I’d be able to do. I’m chilling, I’m relaxing, I have finally found the time to start doing something I promised I would do a long time ago. I’m documenting my journey. This is the first of my ASD posts. My hope is to bring a small amount of comfort to other parents out there and to get personal benefit from the cathartic process of documenting the last few years…