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Volume 759: debated on Wednesday 4 February 2015


Asked by

To ask Her Majesty’s Government what steps they are taking to understand the causes of autism spectrum disorders and speed up diagnosis.

My Lords, I beg leave to ask the Question standing in my name on the Order Paper. In doing so, I draw the House’s attention to my declared interest.

My Lords, there are a number of current government-funded research projects linked to autism. These include a Medical Research Council study to identify why certain genetic mutations can cause problems during brain development. By following the National Institute for Health and Care Excellence’s guidelines and toolkits, autism diagnosis can be speeded up. NHS England also has plans to use its local audit teams to provide assurance that people’s experiences of the diagnostic process are acceptable.

My Lords, I thank the Minister for that thoughtful reply. He and I agree completely that there have been massive improvements in diagnosis over past decades. However, according to the Government’s Think Autism document, reports by the National Autistic Society and the BME organisation Include Me TOO, the experience of many parents seems to be that there are significant disparities and underdiagnosis, particularly among the BME communities. Given the crucial importance of timely diagnosis to the future prospects of someone with autism, how does the Minister’s department intend to address this currently patchy and inconsistent assessment service for all those who are identified as needing a full diagnosis on time and according to the Government’s own standards, and how does it intend to monitor progress?

My Lords, the noble Baroness is right that timely diagnosis of autism is extremely important. I am glad she recognises that progress has been made. I believe that to be true but we know that there is more to be done. The update to the autism strategy, called Think Autism, draws specific attention to the needs of BME communities, and there is a specific action point within that document. I can tell the noble Baroness that we will include that specifically in the statutory guidance that follows on from the strategy. That guidance will be issued shortly.

My Lords, where I live, the daughter of a very nice man in the supermarket has just been diagnosed at the age of six. The problem is not the diagnosis—that has been made—but the fact that there seem to be no facilities of any sort to help him. He has been referred to the local borough by his Member of Parliament—an opposition Member, I might add, but a very nice man—and he has taken up the matter with the council, but nothing has happened. Is this, again, a problem of treatment as between care and health services, and what can be done to bridge the gap?

My Lords, the answer to my noble friend’s question lies in more professionals being trained in autism and services supporting rather better the needs of children and adults with autism, and a lot of work is going on on those fronts. We are also asking local authorities to focus, in particular, on their own performance and to report back on the progress they are making on autism diagnosis, and indeed on other issues in Public Health England’s national autism self-assessment exercise. That process will draw out the shortcomings that exist in certain parts of the country.

My Lords, there is evidence that some 25,000 children in England with autism have not been thoroughly diagnosed. The National Autistic Society, of which I am a vice-president, found in a survey that 34% of autistic people had to wait more than three years for a diagnosis. What are the Government doing to speed up this diagnosis and to ensure that it takes place within three months of a referral, which is the NICE recommendation?

My Lords, part of this depends on the system working in a joined-up way between the National Health Service, local authorities and all the services upon which they depend. A great deal more training is going on, as I have mentioned. In December the Department of Health, the Association of Directors of Adult Social Services and Public Health England issued a new national autism self-assessment exercise, as I have mentioned. Much can be achieved, as we are impressing on local authorities, through low-level preventive support, and there are duties around prevention in the Care Act that local authorities now have in this area.

My Lords, what is the relationship between the Department for Education and the Department of Health, particularly in spotting those at the higher-functioning end of the spectrum, for whom it may not become apparent that they have a problem until later in life rather than in the educational system?

My Lords, the new statutory framework for children and young people with special educational needs and disabilities, SEND, is designed to improve the integrated working across health, education and social care so as to deliver improved outcomes for a child and his or her family. Clinical commissioning groups and local authorities will be working together according to that statutory framework.

My Lords, the Minister clearly accepts that speed of diagnosis ensures that a child or young person gets into treatment faster. The faster they are in treatment, the more likely they are to make some progress in how they are able to function. However, does he accept that there is a disconnect between that diagnosis and the service delivery, particularly with under-fives, where children are waiting a considerable time for their local authorities to sponsor them into nurseries or facilities? What is happening to ensure that that improves?

The noble Baroness makes a very good point. That is exactly why we have given clinical commissioning groups new duties to commission services for nought to 25 year-olds and young people to ensure that procedures are in place, to agree a plan of action, to secure provision which meets a child’s or young person’s reasonable health needs in every case, and to work with the local authority to contribute to the local offer of services for children in this position. That is now a statutory duty and I think it is a step forward.

My Lords, the Minister referred to training. Health Education England is one of the bodies charged with delivering the new strategy for transforming care for people with learning disabilities, including autism. Is it not extraordinary, therefore, that it does not keep a record of which universities deliver courses for nurse training in learning disabilities? Will the Minister ensure that such information is available so that training courses are properly monitored, with autism being a key component of such nurse training?

My Lords, the noble Lord makes an extremely good point. I am very happy to take that back with me to the department.