We are grateful to the following organisations for endorsing the report:
Ambitious about Autism, All Party Parliamentary Group on Autism, AT-Autism, Autism Alliance, Autism Education Trust, Autism NI, Autism Research Trust, Autistica, Autism Spectrum Connections Cymru, Centre for Mental Health, Children and Young Peoples’ Mental Health Coalition, I CAN, Kingwood Trust, Mental Health Foundation, Mental Health Network of the NHS Confederation, MQ, NASEN, National Autistic Society, Research Autism, Royal College of General Practitioners, Royal College of Psychiatrists, Scottish Autism, Style Acre, Wales Autism Research Centre, Westminster Commission on Autism.
In addition, we have received the following comments:
Jon Spiers, Chief Executive of Autistica, said:
“This crucial report adds yet more evidence that as a nation, we’re failing autistic people and their families. At Autistica, we believe everyone on the autism spectrum should have the chance of a long, happy and healthy life but this requires investment in research. Only then can we offer people affected by autism evidence-based, personalised care. By bringing together families, autistic adults, scientists and policymakers, we can find the best ways to use our scarce resources to make a real difference to those living with autism.”
Carol Povey, Director of the National Autistic Society’s Centre for Autism, said:
“This important report sets out how the Government can improve the prospects of autistic people and their families, in large part by gaining a better understanding of their needs and the support that can actually help.
One of the biggest barriers to changing things for the better is that most government departments and public services don’t routinely collect and share data on whether people using public services are autistic. This means we don’t have an accurate enough picture of the number of autistic people in a given area, how long people are waiting for a diagnosis or which services are most effective. Without this data, and an idea of the needs of the autistic people in different authorities, it’s almost impossible for commissioners to plan appropriate support and services.
We urge the Government to consider the findings of this report carefully and take action to make sure that, across the country, there are the support and services in place to meet the needs of autistic people and their families.”
Professor Mark Baker, Director of the Centre for Clinical Pracrtice at NICE said:
“People with autism need to be identified as early as possible so that they can access the best support available to them. However, we know this diagnosis can be delayed when the person has already been told that they have ADHD or a learning disability.
The NICE ‘Autism: identification and diagnosis in under 19s’ guideline is currently being updated to highlight this issue, and I am glad to see that this report by the National Autism Project also recognises it as a challenge.
I hope that our guidance and this report will work together to highlight the problem and set out the steps we can take to address it.”
Jenny Edwards CBE, Chief Executive of the Mental Health Foundation, said:
“The Mental Health Foundation welcomes a rights based approach to autism. The report is based on person centred principles and highlights the importance of early identification and support to prevent more costly interventions. We particularly endorse the recommendation on removing barriers to access in healthcare, education and employment, and specifically mental health care, to tackle the inequities faced by people living with autism.”
Dr Max Davie, Assistant Officer for Health Promotion for the Royal College of Paediatrics and Child Health (RCPCH), said:
“We would support the National Autism Project’s call for a campaign to raise awareness about autism – its impact and the necessary improvements required to boost people’s wellbeing. And we recognise more research is needed about the experiences of people with autism to ensure services are best geared to their needs.The release of a report where experts have examined the extent of support available nationwide for people and their families with autism will have a valuable impact on helping to improve individuals’ wellbeing.
The report’s ’10 ideas’ to help improve the situation for people with autism, including early identification, better evidence of which services and activities are useful, and greater investment in services could have a positive impact throughout people’s lives.”
Prof Dame Sue Bailey, Chair of the Children and Young People’s Mental Health Coalition, said:
“We welcome this important work which highlights the inequalities that people with autism face. Children and young people with autism are more likely than the general population to also have mental health problems, such as anxiety, multiplying the challenges they live with.
The Children and Young People’s Mental Health Coalition are working to raise awareness of the mental health needs of children with conditions such as autism, and the problems they face accessing mental health services, especially as they make the transition from children’s to adult services.”