Autism

Baroness Rock Excerpts

Tuesday 22nd March 2016 Grand Committee

[Baroness Rock (Con)]

My Lords, I add my thanks to my noble friend Lady Browning for bringing to this House such an important debate.

People on the autistic spectrum perceive the world differently from others. They find the rest of us strange and baffling. Why do we not say what we mean? Why do we tolerate such a confusion of sensations of light, smell, sound, touch and taste without screaming? Why do we have such complicated emotional relationships? Why do we send and receive so many social signals to each other and how do we make sense of them? Why are we so illogical?

More than 700,000 people in the UK today are currently diagnosed with autism. If you include their families, autism touches the lives of over 2.8 million people. I am one of them. As the mother of a child with special educational needs, I have experienced at first hand the challenges and stresses of raising a child who sees the world differently and finds frightening the things that we take for granted. However, and I really cannot emphasise this enough, I have also experienced the rewards and joys of raising a child who is atypical and unique, and who brings so many unexpected qualities that surprise and enrich our lives. We are lucky; we managed to access the right support and the right schooling.

Why is speed and quality of diagnosis so necessary? It is simply because a diagnosis clarifies special educational and behavioural needs and the means to get those needs met, and gives entitlement to services and financial support. It is the first concrete step on a long journey. We are making progress. Autism diagnosis has increased by a factor of 25 in the last 30 years, but still only two-thirds of children and one in 10 adults with autism have a diagnosis. However, a critical question is: how can parents recognise that their child is on the autistic spectrum? Every child presents differently, and children with the same label may be more different than they are alike.

Early-years educationalists and childcare workers have the insight and ability to recognise communication and behavioural issues, and therefore can take more responsibility in helping parents to assess their child’s difficulties and enable specific diagnosis on a timely scale. I am not advocating that every teacher or childcare worker needs to be a neurodevelopmental expert; on the contrary, it is their collective experience and observation of children with difficulties in school and their close communication with parents that puts them in a unique position. With training, they can enable parents to articulate their concerns and to have those concerns acted upon, wherever that might lead, whether it is diagnosis or other support.

For many parents, it is difficult and frightening to comprehend what is “normal” behaviour and what is a cause for concern that needs professional input. In my case, my child was my first-born and I had no basis of comparison. It is truly overwhelming to be in that position, but harnessing the good sense of educationalists early on is a really important resource. We need to acknowledge that they are a crucial part of the diagnostic process. As professionals, they have an empathy and perspective that can be nurtured and encouraged to support parents. Timely identification of social communication problems puts parents and children on to specific autism pathways, as my noble friend Lady Browning mentioned, which can then initiate and expedite diagnosis.

The impact of living with a child with autism can be devastating for many families. The high incidence of marital breakdown where a family has a disabled child speaks for itself, and there is growing concern about the mental health costs to siblings and other family members. Being the parent of a child with autism can be one of the loneliest places in the world. Acknowledgment and affirmation of the valuable contribution of early-years educationalists and childcare workers towards supporting parents to get the right diagnosis will lead to the right help. This transforms lives.