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The Day My Son Received His Autism Diagnosis

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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 confirmation of what I knew in my heart was true. I needed someone to acknowledge our experiences and have a reason reason why. I needed to hear: “it’s nothing you’ve done wrong.” I needed that confirmation for the many who have judged my parenting.

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 you feel like 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 what kept me focusing forward. We didn’t have the best weeks; Christmas brought chaos to ourroutine. We faced exclusion at school three times in the space of two weeks because of Sonny’s anxiety and challenging behavior.

A few weeks ago Hertfordshire was feet deep in snow and it was brilliantly beautiful. It rarely snows here. In fact, 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 ventured out with us and we made the most marvelous snowman: Mr Snow. The snow mostly cleared by the time our appointment came around, which I was most relieved about.

Four of us went to the appointment: my husband, my sister, my son and I. We arrived at the hospital at 10 a.m., 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’s special education needs coordinator (SENCO) put forward her comments for contribution. We were called 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.

Joe and I 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. 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. It’s hard to know what he does or 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 spoke 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 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.

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 elsewhere and goodness knows how long we’d be waiting.

We left Sonny in the café with his auntie, knowing his part was done. He sat and watched kids programs while Joe and I headed back to meet with the consultant. Eventually we were called in for feedback. We were told Sonny is incredibly complex (don’t we know it) and although there are some behaviors 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 felt utter relief. It was though a huge weight was lifted from my shoulders the moment the consultant uttered those words.

I looked over at the school SENCO and smiled. She smiled and gave me that look that said “yes!” The speech and language therapist shared all 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 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 hadn’t figured out myself through tears, meltdowns, trial and error.

Diagnosis is not about giving an individual a label. Diagnosis is so much more. 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 on to the next chapter in our journey.

Chapter one was the fight for the diagnosis. That chapter is now closed.

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Originally published: January 2, 2017
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