This week, after a nearly two year wait, we received Sonny’s official Diagnosis of Autism Spectrum Disorder. Two years is a long time to be treading water and I’m so relieved it’s finally over.
I needed to have confirmed what I knew in my heart was true. I needed someone to acknowledge our struggles and tell me here is the reason why. I needed to hear “it’s nothing you’ve done wrong.” I needed that proof and confirmation to be able to tell all those who’ve judged us on face value because ‘Autism doesn’t have a look.’ Autism is a hidden disability.
I woke up Wednesday morning feeling like it was my birthday, I couldn’t wait! We’ve been waiting for this day for so long. I felt such despair and disappointment when our previous appointment in November was cancelled. I’m not one to wish time away but when your family is crumbling in your hands and you’re trying your best to hold all the pieces together, an appointment with a professional is often all that keeps you focusing forward. We’ve not had the best few weeks, it’s almost Christmas and that brings chaos to our Routine. We’ve faced exclusion at school three times in the space of two weeks because Sonny’s anxiety and challenging behaviour reached explosive new heights.
At the beginning of the week, Hertfordshire was feet deep in snow and it was brilliantly beautiful. It rarely snows here. Infact, the last time it snowed enough to settle Sonny was only a year old. We had put our Christmas tree and decorations up the night before so waking up that Sunday morning was pure magic. Sonny wasn’t too fussed initially but eventually adventured out with us and we made the most marvellous snowman (Mr Snow.) It had mostly cleared by the time our appointment came around which I was most relieved about.
We arrived at the hospital at 10am, fully prepared with snacks and iPads as we were expecting to be there until lunch time at least. Usually the professionals meet half an hour before and discuss the initial report and the school SENCO put forward her comments for contribution. We were called through just after 10am and were pretty swiftly separated into two rooms. Sonny was initially unsettled by this and clung to me but had his Auntie with him so that was comforting.
Myself and Joe went into one room with the Consultant and Sonny’s school SENCO. Sonny followed the hospital speech and language therapist and his auntie into the next room along. The rooms were a fair size and had a floor to ceiling two way mirror. Our room was small and dark so we could clearly see Sonny sitting at the table only a meter or two away with the speech and language therapist. We couldn’t hear him but being able to watch him in his own space, doing his thing was interesting. We spent about an hour answering questions and going through Sonny’s needs and the challenges we face. I found many of the questions really difficult to answer. Its hard to know what he does / what we do that is outside of the norm. This is our norm. The SENCO supported all of what we said which helped.
During the time we was speaking with the consultant, the speech and language therapist was carrying out her part of the Autism Assessment. She was asking him to do a series of activities, asking him lots of questions and was making notes. It was all done very discreetly, Sonny was none the wiser he was being assessed. Although he wasn’t up for talking about anything negative. He gave the impression he is never cross, never upset and is at any point ever told off. (………yeah that’s what I thought too! I don’t think we’d be in this situation if this was the case)
We were sent on our way for a half an hour break while the professionals put together their findings and discussed whether or not he meets the criteria for a clear diagnosis of Autism Spectrum Disorder. We all sat in the hospital café during our break. Sonny is most familiar with this hospital and knows exactly what he wants to order. A Warm Chocolate (never called a hot chocolate because he doesn’t want it hot….. Autism right there in all it’s beauty) a double chocolate chip muffin and a bag of popcorn.
At this point, I was feeling rather anxious. No way was I leaving without a diagnosis today. We had been pre-warned that if they found him not meeting the criteria, he would be referred else where and goodness knows how long we’d be waiting.
We left Sonny in the café with his Auntie knowing safely his part was done. He sat and watched kids programmes while myself and Joe headed back up to meet with the consultant. Eventually we were called back in and given our feedback. We were told that Sonny is incredibly complex (don’t we know it) and although there are some behaviours that concern them that don’t typically link to Autism, they were happy that he meets the criteria for a formal diagnosis.
We did it!
I looked over at the school SENCO and smiled. She smiled and gave me that look that said ‘YES!’ The speech and language therapist fed back all of her findings and together we spoke of a way forward, both supporting Sonny and the staff at school and supporting Sonny and us as a family at home.
We were handed a little brown paper folder that had a snippet of information from the National Autistic Society and some other information about local support groups etc. I’ll be honest, after those two years waiting, I found that little paper folder to be useless. Inside it was nothing I had figured out myself through tears, tantrums, trial and error. I just felt utter relief. It was though a huge weight was lifted from my shoulders the moment the consultant uttered those words.
Diagnosis is not about giving an individual a label. Diagnosis is so much more and only those who so desperately seek it understand it’s true value. For us it’s clarity. It’s extra support. It’s doors open a little wider. It’s no longer treading water. It’s drawing a line in the sands of uncertainty.
We can look forward now positively as we move onto the next chapter in our journey.
Chapter 1 – The Fight for Diagnosis.