2. The Appointment

The day we're told Daisy has autism

It sounds ridiculous to me now, but I still didn’t know what autism really meant or understand the concept of a multi-disciplinary assessment. I had no idea what to expect. I naively took Daisy on my own as though we were going to a routine doctor’s appointment. Damian was at work. It didn’t occur to me that I might need him there for support.

At this stage I thought there was a chance that she might have autism, but something – some misplaced hope or optimism – allowed me to entertain the thought that there could also be another explanation. I certainly hadn’t confronted the reality. I had no experience of autism or what it meant; for me then it was something that happened to other people. It wasn’t a part of my life. It couldn’t be my child, it couldn’t be Daisy.

Six weeks after the weekend with Kaz, Daisy and I turned up at Guy’s Hospital in London and made our way to the Newcomen Centre, a neurodevelopmental clinic attached to the Evelina Hospital, for her MDT assessment.

I was met at reception by Dr Jacqueline Bold, a Consultant in Paediatric Neurodisability. She explained that Daisy would be taken to another room without me to be assessed by the team, which included a Highly Specialist Clinical Psychologist, Rebecca Martyn, a Highly Specialist Occupational Therapist, Hayley Dutton, and the Paediatric Principal Speech and Language Therapist, Martin Smedley. They would observe her taking part in simple table-top activities, doing some physical exercises and engaging in conversation. 

Daisy happily left me to go with the team while I stayed with Dr Bold. We sat at a desk together in a functional room with blue soft play mats in the corner on the floor and bright blue plastic chairs. For three hours she grilled me about Daisy.

Was Daisy’s birth normal? No, she was induced two and a half weeks late and delivered by ventouse. When did she sit upright unsupported?  Did she crawl before she walked? Did you notice any anomalies when she was learning to talk? I can’t remember. Yes. No.

We covered everything from our family history, to developmental milestones, to Daisy’s behaviour at home and in school. I was asked to describe my concerns. I tried to explain, tried to pull seemingly disconnected thoughts, observations and events together to paint a coherent picture. I talked about how disengaged she was at Playball, how she was falling so far behind at school, how she frequently fell over. I described Daisy’s close relationships with Damian, me and her brothers, her love of being read to, her physical determination and her good nature. 

It seemed a jumbled, incoherent muddle to me. There were some questions I couldn’t answer - I just couldn’t remember or I hadn’t noticed. I couldn’t see the relevance in what I was being asked or what I was saying. Dr Bold encouraged me to continue, but her face remained neutral; she gave me no indication that the pieces might be connecting in her mind to complete a puzzle.

Finally after three hours, Daisy was brought back into the room entirely unscathed. I was drained. The four consultants followed behind with their notes, smiling, but not really engaging or revealing anything to me. Their physical presence and the weight of their expertise filled the room and suddenly felt intimidating. I felt exposed and vulnerable. They had the answers, but I was still in the dark. They held Daisy’s future - and mine - in their hand.

We had a thirty-minute break while they discussed Daisy from their different perspectives and matched their observations with my testimony. I can’t remember how I passed the time. Daisy played happily on the soft play mats with boxes of toys assembled for this situation. I watched her distracted and stared blankly out of the window at the grey buildings opposite.  

We reconvened. The five of them arranged themselves on the bright blue chairs opposite me in a gentle semi-circle with nothing in the space between us. There was no protective barrier or shield, like a table. It was like being at an interview or before a panel of judges. I folded my arms and crossed my legs.

Nothing could have prepared me for what was to come.

The description of Daisy that I heard from the panel on that day bore no relation to my reality.

Everything about Daisy that I loved, all her traits and characteristics unique to her that made her my child, were observed, professionalised and translated into clinical, neurological and behavioural language.

Martin Smedley, the speech and language therapist, delivered a direct, brutal assault.

I struggled to make some sense of the onslaught. “Daisy certainly has no creative, imaginative skills… learning difficulties… she lacks empathy… significant developmental delay… immature… becomes anxious… poor sustained attention… variable eye contact… flat facial expression… very significant motor difficulties…”

Certainly? I still remember that word “certainly”. What did the rest of it mean? Was this my failure as a mother? In the sea of confusion, trying to make sense of words and phrases flying around my mind, the one thing I grasped was that they were sure. There was no doubt. It was definitive.

Martin concluded by saying that although they weren’t completely sure that Daisy met all three criteria for a clinical diagnosis of autism, they were going to give it to her because without it we would struggle to get the help and support she needed. She also had a learning difficulty and developmental co-ordination disorder.

Hayley arranged a follow-up OT appointment for me and said they would send a full report in the next few weeks. If I had any questions after that, I could arrange another meeting with Martin.

Paralysed by what I had just heard, incapable of making any sense of it, I went into auto-pilot. I gathered our things together, scooped Daisy up and thanked the four of them for their time.

On the way home, reeling, I rang Damian. “Well at least we know now,” he said. His matter-of-fact response took the wind out of me. Untethered irrational thoughts and emotions were flying around my mind in a frenzy. He sounded sensible, calm and in control, so far away from how I was feeling.

When I got home, I went to my bedroom. I rang Kaz and slumped to the floor in tears.