Mairi Evans headshot photo alongside quoteMairi Evans works in a children’s autism diagnosis service in Berkshire, South East England. In this blog, she explains how a growth in public awareness of autism in recent years has led to increased demand for autism assessments – and how her team are trying to meet this need, reduce pressure on families and ultimately bring waiting times down. 

Without investment from central government, her service and many others will continue to find it difficult to meet demand. This is why the National Autistic Society is campaigning for the Government and NHS England to make sure that every area has the staff and funding it needs to drive down waiting times and improve support for autistic people and families before and after diagnosis.

This is part of a series of blogs the National Autistic Society is planning to publish to highlight the autism diagnosis crisis.
 

Mairi: I oversee two combined services that provide autism and ADHD assessments for children and young people up to 18. I am a social worker and family therapist by background and have worked in Children and Adolescent Mental Health Services (CAMHS) for almost 20 years. When I started, autism was seen as rare, affecting a small percentage of children who would often have profound learning and language difficulties and need specialist education or care. I have found over this time that my awareness of - and relationship with - autism has changed greatly, as has the awareness of autism in the services and communities I have worked with. 

I joined Berkshire’s new Autism Assessment Team in 2012 and took the role of Clinical Lead in the assessment team two years later. Since then, I’ve seen the diagnostic process from both sides: as a parent and a professional. 

Referrals to the Autism Assessment Team have more than doubled since it was created in 2012, with well in excess of 1,000 children and young people referred every year. Our understanding of autism, and what autism is, has changed greatly since I first started work in CAMHS. As clinicians, we are now aware that we had already had years of experience supporting autistic children. But many of them were undiagnosed, which was potentially leading to the self-harm, depression or anxiety that brought them for therapy at CAMHS in the first place. There has also been an increase in adults being diagnosed. And advocates such as Carly Jones MBE are highlighting the impact of being diagnosed, how valuable autistic people are to our communities and the importance of the right support. 

Increased awareness of autism is a great thing. But it also means an increase in referrals as parents seek clarification about their child’s needs. Parents seek a diagnosis in the hope that they can access the right support both at home and at school and reduce daily struggles experienced by their children and family. 

Journey to diagnosis

The journey for parents is emotional and often very difficult, from when they consider that there may be something ‘different’ about their child, to the decision to go for assessment and the moment of diagnosis. The journey doesn’t end after diagnosis as they support their child to learn what it means to be autistic, educate their family and fight to ensure that they and their child have the support they need to have a happy and fulfilled life. While the diagnosis is a vital part of the process, it is only part of the process - and not the beginning, or the end. It is not surprising then that research has highlighted a lot of dissatisfaction in the diagnostic process (Crane et al 2015, Siklos and Kerns 2007, Howlin and Moore 1997), due to the waiting times and the emotional rollercoaster that is experienced along the way. 

Services like ours are continuously trying to balance the need to see as many children as we can in the fastest time possible, with the need to develop and improve the process and quality of our assessments. This is coupled with the increase in demand and a backdrop of on-going financial pressures and cuts within the NHS. 

We want to create a situation where parents and carers feel supported and informed before their child’s assessment, listened to within the assessment itself, and supported once the diagnosis is made. We also want autism to be understood as a difference not a disorder - for parents, carers and young people to be able to understand their strengths and abilities, as well as how to manage the challenges. We also know that a diagnosis may give an understanding of need but it will not change the level of need or the level of support that is required once a diagnosis is made. 

The changes our service is making

We have worked very closely with commissioners, local agencies and groups and autistic people, their families and carers to find ways to provide support throughout the diagnostic process, as well as before and after assessment. Support should be led by someone’s needs, not whether they have a diagnosis. We do not think it is right that parents or carers should be told that there will be no support for their child until a diagnosis is made, or that there is nothing that they can do while their child is on the waiting list. 

We also know that there is only so much money given to commissioners. And if they increase the money they are giving us to reduce the wait for assessments this means less money elsewhere (for example eating disorder services or locality CAMHS teams). 

Lots of researchers have discovered that parents’ experiences of diagnosis are more positive if they are involved in groups, where they can meet others in similar situations and have access to information, advice and support without having to wait for their child’s assessment. So, we have taken a number of steps to help during this time:

  • In 2014 we developed pre-assessment support groups with two local charities, Autism Berkshire and Parenting Special Children. These groups are now funded by the local Clinical Commissioning Groups (CCGs) and provided by three groups: Autism Berkshire, Parenting Special Children and The Autism Group. 
  • These local charity groups have also opened up their parenting programmes to parents/carers who are waiting for their child to be assessed, again supported by local commissioners. They invite families waiting for assessments to activities and events such as trampoline clubs and family fun days. 
  • We have built positive relationships with other agencies and have attended and presented at SENCO groups, Educational Psychology groups and parent forums to raise awareness of autism. We recently co-hosted a successful all-age autism conference with NHS England which had presentations by experts-by-experience and professionals, again with the aim raising awareness of autism and neurodiversity. 
  • We have created a YouTube film of the assessment process to help children, young people and their carers know what to expect when they come for an assessment. 
  • We have an online resource for children and young people with a range of information and advice about autism, ADHD and issues such as sensory processing difficulties. 
  • Our team provide a helpline three afternoons a week for people waiting for an assessment so they can help, advise and signpost when needed. We also have a letter which can be given to schools to promote needs-led support rather than waiting for a diagnosis to be made.
  • Something which I am particularly proud of is SHaRON Jupiter. SHaRON stands for Support, Hope and Resources Online and provides an online support service where parents or carers can stay in touch with us and offer support and advice to each other before, during or after a diagnosis. 

Once a diagnosis is made we are working to make it as positive as possible so that parents can be helped to celebrate their child’s differences and get support in managing where their child is challenged. In order to gain some insight into different experiences of the diagnosis process, we have invited parents, carers and young people to talk to the team about what helped them and what they would have liked to be different when a diagnosis was made. And we are also working with local schools to promote autism awareness. We hope to improve awareness of autism regardless of diagnosis, and to work collaboratively with our education colleagues to think about the needs and challenges for our young people in the school environment. 

Conclusion

We know we have a long way to go to get it right every time but we are doing all we can, despite the increase in demand and scarce resources. 

We want to see children quicker and to continue improving all aspects of the assessment process to support parents, carers and children and young people with this important and emotional journey. In order to do this it is important is that we are all working together across all services (NHS, education, social care and charity organisations), with commissioners and with families and experts by experience. 

We are continuing to do our best but we need the funding from Government to keep up with the demand and make sure that all our other services can thrive too. 

Further information

At the National Autistic Society, we have lots of information and advice to help people wondering if they or a loved one are autistic and what the diagnosis process is like.