DIAGNOSIS A: The Truth Behind Diagnosis

I am blessed with the most wonderful, beautiful and bright little boy. He is the love of my life and I couldn’t be prouder of him. He is utterly amazing and never fails to make me smile, laugh out loud even at his wicked sense of humour. Our son is a credit to us and anyone that ever wants to criticise him will have me to answer to.

I have been contemplating as to whether or not I should document the following blog post, is it fair upon my son to share information upon him with the World? I made the decision to share this purely because I believe that it could help someone else, another parent or carer perhaps. I want to explain our journey in diagnosis and just shed some light upon how hard it can be in gaining the answers and support required.

My son was around eighteen months old when I began to notice that he displayed traits of autism. At first I tried telling myself that I was imagining it and it was just my teacher traits taking over and making me paranoid.

J was great when playing with us, his parents, but when faced with playing with others his own age he played singularly and seemed unsure of how to act around his peers. That wasn’t such a huge concern for me, I was more bothered by the fact that he was now selective over his choice of clothing, specifically in that the items he wore had to have certain cartoon characters on. This became an issue when certain tops were in the wash, he would become upset, so much so that we ended up purchasing matching tops to avoid melt downs.

J also became distant, he would be able to hear what we said but wouldn’t necessarily respond. It was frustrating at times and for a while I wondered whether it was a hearing or behavioural issue.

As for sleep, what sleep?! He woke every night desperate for our company. We became accustomed to sharing our bed with him, this wasn’t a problem for us, I cherished the extra cuddles but knew it may be an issue further down the line.

As the months passed by I realised that I could no longer ignore the signs as it wouldn’t be fair to J in the long run.

I first mentioned my worries to his nursery key worker, she poo-poo’d my suggestions and assured me that he was just a little boy and it would be far too early to look into anything of the sort. Later, once he began preschool I then let his teacher know my concerns and she too dismissed my worries with a casual wave of her hand. Kids are just kids right ? I felt I was wrong in even thinking my son could be on the spectrum, I must be a terrible parent for ever wondering anything of the sort.

As time went on however, I became more certain of my suspicions that J may be on the spectrum. His diet became limited as he became anxious over textures and arrangement of his food each meal time. He enjoyed playing with his toys but as I observed him I realised rather than playing imaginatively, he was organising his toys and rather than voicing himself he’d often fall into the habit of making noises. There were other things too, none of which were precise pointers to being on the spectrum but definitely made me wonder…

We spent a lot of time preparing for our son starting school by teaching him to read using the Letterland schemes, helping him to recognise and count numbers 1-20 and form letters correctly using a pen or pencil. Before we knew it J could write his name and it was time to buy him a uniform… My little boy was growing up and getting ready to go to school.

After a few months I decided to speak to his reception teacher regarding my observations upon my son. She was the first person to agree with me and explained how she saw things from a school perspective. It seemed I was one of the first parents to identify their own child as possibly being on the spectrum. I wasn’t sure whether being a teacher myself was a gift or a curse at this point, neither was I sure whether I was heart-broken or relieved at having my worries affirmed by a fellow teacher. One thing was for sure, something had to be done.

We decided that it was best for him if we acted upon our suspicions and began the process of getting a diagnosis for J. Believe me when I tell you, there is nothing quick about having autism diagnosed, you may have more luck getting blood from a stone.

We began by having him observed within school by a specialist, the report from this showed that they weren’t entirely sure over whether or not he was on the spectrum and they wanted us to give it time to wait and see.

A year passed by, we continued as a team (his teacher and I) to take notes upon his progress. We then decided to look into the issue with the GP. The GP referred us to CAHMs and then back to the school. A few more months passed and CAHMs wrote to us to let us know that they no longer dealt with Autism. I felt like time was being wasted and nobody could help us. Frustrating to say the least.

We then managed to have J referred to another GP up the coast that dealt with children on the spectrum. We first had to have a hearing test carried out to ensure that there were no issues with his hearing which could be causing the symptoms. As I suspected, his hearing was impeccable, he can actually hear far more than most of us, including high and low range frequencies making him able to hear lights and electronic gadgets humming! No wonder he gets easily annoyed… Can you imagine hearing all that stuff?!

A few months later we were asked to visit the GP up the coast again both with both of our children.We assumed that this would take place in the same hospital as the previous appointment and so arrived with plenty of time to spare, parked up in the Morrisons car park and delved into our dinner. It was all very relaxed unlike most of our appointments which we are usually rushing around to make it in time for. It was a minute to the appointment and so we traipsed into the surgery together and asked at reception to book in. It was at this point that they kindly let us know we were actually about nine miles away from the hospital we actually needed. We quickly ran to the car, belted the kids in and dashed off up the hill having no clue other than a vague general direction as to where we were heading.

Ten minutes later and a panicked phone call to the hospital to explain we’d be late we arrived at a hospital I can only compare to a rabbit warren. There were barely any sign posts and no matter who we asked they all sent us in differing directions. Why the hell I choose to wear the most ridiculously high-heeled, uncomfortable boots which were impossible to run in without breaking an ankle, God only knows! Maybe I was trying to make a good impression, I’m not sure, the only impression I would have made at this point was of a slightly crazy and lost woman, glazed in sweat from running around random buildings and hobbling from falling off a pavement in my desperate attempts to make up time.

We eventually arrived only twenty-five minutes later than we should have done, the Doctor was amazingly understanding and we finally relaxed in a room with E, our little girl and the Doctor to discuss our daughters progress in terms of milestones, meanwhile J was next door with a speech and language therapist being assessed. He had no idea that he was the one being observed, he assumed that he was going to play whilst his sister had an appointment, this worked just fine as he was much more relaxed.

Almost an hour later we all met up to summarise the findings and for the Doctor to also see J. Both the Doctor and Speech Therapist agreed a diagnosis of Asperger’s Syndrome. It was at this point that it became clear that it wasn’t just us having a disastrous day, as we were leaving the building the Doctors husband turned up to let her know that he had accidentally filled her car with diesel instead of petrol. Her facial response was not dissimilar to my own after being told I was at the incorrect hospital a few hours before.

More months passed by and we were still without official diagnosis. We were however a lot further forward in gaining answers and were far more able to begin taking steps to help J. We had been told that it could be up to a year before an Educational Psychologist would be able to visit, observe and assess him (the final step required to complete the assessment).

J then began Year 2 and it seemed as if things were improving somehow, he seemed far more settled in himself which was wonderful. However, there were still days which seemed difficult for him and we realised it was now affecting his friendships as he struggled socially. Not only that but he seemed to be shutting off and unable to understand things like other children. I felt at a loss as it seemed like somehow we’d slipped out of the loop.

Then, literally just as I was about to take steps into investigating where we were at in the process of diagnosis, we were contacted by the ‘final step’, the Educational Psychologist who was visiting our boy to carry out the final leg of the diagnosis marathon. We were invited into the school to discuss observations made and to decide upon the next steps.

It was confirmed yesterday that indeed J is on the spectrum. So much has changed since I first suspected him as having Asperger’s syndrome, that it’s no longer even referred to as that! They now class Asperger’s as ASD, as they class all forms of autism. It’s all under one big umbrella these days and whilst I’m not sure whether I prefer that or not, I’m also uncertain as to whether or not I need to speak to our little man about this and explain to my son that yes, there are reasons for some of the stuff going on up there in his amazing mind.

It’ll hopefully be before Easter when we receive the official paperwork and from there it’s all about making choices in how to help J in terms of his learning and how to support him during those difficult days. I would never class him as disabled or really any different, he is ‘just J’ my wonderful little man who lights up my World.

Whilst it has taken over five years to complete diagnosis from start to end (and I very much doubt that this is the end, it’s actually the very beginning) it has all been and will all be worth it. If it means that our son can be given the support that he needs to make things that little bit easier, a helping hand to enable him to see things clearly and to make sense of them. Help for us too, his parents, family and teachers to be able to understand and connect with his world, and most importantly ensuring that he is confident and happy as he grows up.

I admit that there is a little piece of me which feels a little bit sad, as parents we want the very best for our children. That sadness is irradiated each time I remind myself just why we have chosen to have J diagnosed, to make him happy in the long haul. He is our world and his world is an amazing place, full of angry birds, bad piggies, Minecraft creepers and us, his loving and immensely proud family.