Autism: Parenting Support Programmes

My Lords, we fully recognise the difficulties that families face in accessing the right support following a child’s autism diagnosis. In local areas, post-diagnostic support may be accessed via health, social care, education, and voluntary and community services, depending on what the individual needs. Alongside local support offers, a national peer education programme, Autism Central, is available for families and support networks of autistic people. The Government are reforming the SEND system to improve access to earlier support.

My Lords, I thank the Minister, although her Answer confirms that no assessment has been made of the adequacy of parenting support programmes and that data is not held centrally. Earlier this year, Open University research found that only one in four parents of neurodivergent children feel confident in the advice they receive. Will the Minister commit to collecting national data on waiting times and capacity so that progress can actually be measured?

The noble Baroness raises a very interesting point. One of the most important directions of travel is that we robustly increase capacity at a local level, to bring together all the key people so that we get an accurate picture of what is happening. That can then be collated up to national level, but it is local decision-making, and the involvement of families themselves, who can bring so much information to the table, that is key.

My Lords, can I go back one step? Many families wait months, if not years, before receiving a diagnosis. Approximately how many children and young people are currently waiting for an autism assessment, and what support is available to them and their families during that period, rather than waiting until a diagnosis has actually been made?

The figures that we are working from say that 270,701 people were waiting for an autism assessment in March 2026. We know that the average waiting time for assessments varies across the country: for 0 to 17 year-olds it is about 67 weeks, and for patients aged 18-plus it is about 20 weeks. The noble Lord is absolutely right to stress the importance of not having to wait for the actual diagnosis before things are put in place. That is why we are putting such focus on SEND reforms in schools and in early years provision, to make sure that we get early assessments and can put in place the support that we know is available as early as we possibly can.

My Lords, while acknowledging the great importance of services to these families, will my noble friend the Minister also acknowledge the importance of peer support in these circumstances and commend the work of the many charities enabling families in the same circumstances to talk to each other, to share information and to get support?

It will not come as any surprise to noble Lords that I support my noble friend completely on this. In those early days when the suspicion starts to arise, there is absolutely no substitute for having someone you can go and talk to in confidence, without escalating a situation, and to share experiences with. As she rightly highlights, the charity sector can signpost people to the support available and show them how to get on track in the system, moving towards diagnosis and further support.

My Lords, even if we had all the money in the world, I suggest that our real problem is that it will take years to build up the number of people who understand this and have the relevant experience. How would the Minister respond to that view?

The noble Lord raises an interesting point. At the moment, we are talking more openly and exchanging more information about what is actually happening because more people are sharing experiences, putting in place support networks and raising awareness. There are still too many people—whether in our education sector or in businesses and employment—who do not understand the needs of autistic people in particular, although we are talking about learning disabilities across the piece. We are on a very steep learning curve, but the most important thing is that we get provision in place to help people at the time of greatest need.

My Lords, the Government sound very confident about this, but on the 29th of last month, in Committee Room 10, I was in a room full of parents of people on the autism spectrum who have gone through the process. Generally, they were terrified of the idea of integration into schools with untrained staff—schools in which their children have already spent their time in corridors or quiet rooms, with one TA looking in occasionally. Will the Government give an assurance that supported special schools will be part of this and that integration will not be done as a religion but merely when it is appropriate?

I have heard the noble Lord speak about this many times, and I reassure him that there will not be a one-size-fits-all approach to this. It is vital to recognise that there are young people who have particular needs that will be addressed through specialist schools, for example. However, there is so much evidence that, if we get this right—by putting in the investment, putting in the training that we are funding and working with young people—the benefits of integration and inclusive learning, where they are being done successfully, are enormous. The noble Lord is right that it is important that we get this right. I understand the nervousness, particularly from parents who have spent a lot of time getting their cases heard, so it is up to us to make sure that we go out and give the reassurance that their needs will not be left behind.

My Lords, research has consistently shown that mothers make up the majority of primary caregivers for children with autism spectrum disorder, often at the cost of their own health, well-being and employment. What specific support is available for these mothers in order to protect their health, well-being and paid employment?

It is a well-recognised fact that women bear the brunt of caring responsibilities, at whatever age they are presented. Raising awareness of this, making sure that it is understood and acknowledging how unfair the lack of support has been is pivotal in making sure that we arrange the support mechanisms that are required to move us forward.

My Lords, further to the question from the noble Baroness, Lady Pitkeathley, about charities, I declare an interest because I am involved with a number of autistic charities in my old constituency in King’s Lynn and across Norfolk. Is the Minister aware that one of the biggest challenges is when these children who are on the autistic spectrum come out of college and try to find their way into further training or jobs? Can she comment specifically on what the Government are doing to help that transition?

The noble Lord touches on a particular obsession of mine. It is not just about the transition into adulthood, which is absolutely pivotal, but starts earlier than that and is about the transition through the different stages of education. We need to make sure that we completely get away from the awful situation where young people fall through the gaps and there is no information exchange. That is why cross-government working is so critical here. We need the education sector to talk to the health sector and DWP, to make sure that we have a holistic view of young people so that they can move on to the appropriate location and get the right support.

My Lords, in responding to the Question from the noble Baroness, Lady Leaman, the Minister confirmed that the Government have not assessed the adequacy of parenting support for families following a diagnosis and do not hold national data on either provision or waiting times. Does the Minister’s department intend to carry out that assessment nationally or to ask ICBs to collect that data locally? If not, without that information, how can the department be confident that families are receiving the appropriate level of support that they need?

I do not want to stand here and say that we have got things right. The system is broken and needs so much attention throughout. To pick up the noble Lord’s point about ICBs, the medium-term planning framework gives clear expectations for local ICBs and trusts. We need them to work to improve access, experience and outcomes, focusing on quality and productivity. So many areas have data and gather information, but they do not do anything with it. That is what we absolutely need to address, to make sure that we have an accurate picture and can make the appropriate assessments.