New Autism Strategy (Autism Act 2009 Committee Report)

Baroness Goudie Excerpts

Wednesday 10th June 2026 Lords Chamber

[Baroness Goudie (Lab)]

My Lords, it was a privilege for me to sit on the Autism Act 2009 Committee. I am very glad that we have the opportunity to discuss the report today. I thank all my colleagues across the House, in particular the noble Baroness, Lady Browning, and the noble Lord, Lord Touhig, who gave me great encouragement when I decided to join the committee. I also thank the chair, the noble Baroness, Lady Rock, who was so inclusive towards us and was available for all sorts of extras when we wanted to do things. I thank the clerk Stuart Stoner for all the support he gave us throughout the making of this report. I think I have thanked everybody. Above all, I thank all the families and carers, as well as professionals and organisations, who gave evidence to us; without that evidence, we would not be here today, and we could not have done that report. It was difficult for them to give evidence to us, and it was difficult for us to take the evidence, but it was so rewarding.

The Autism Act was a landmark piece of legislation, and our committee’s report, Time to Deliver, is rooted in the same ambition that autistic people should not be an afterthought in public policy. Time to Deliver acknowledges the progress that has been made, but through the evidence presented to us by people living with autism, or through their experience of working with them or being part of their family or support network, we know that the system in this country is far too slow, systemically fragmented, and difficult and time-intensive to navigate. Families need support at every moment from the time they have a diagnosis or think there is a diagnosis to be made.

I welcome the Government’s response to the report, and I know that Ministers are considering these matters seriously. I hope that over the coming months the Government will work on the United Kingdom’s next autism strategy, to build on that response. To be successful, the next autism strategy must have a clear delivery plan, accountability measures, measurable outcomes and sufficient funding. Autistic people need to be able to feel a difference in their daily lives as a result of any work undertaken.

I will highlight the key findings of Time to Deliver to reaffirm how important this work is. One of the most pressing issues we were presented with was diagnosis, and we learned that nearly 90% of those waiting for an autism assessment had been waiting longer than the NICE recommendation of 13 weeks, and the average is more than 17 months. For a child out of school, as quite often happens, every day without educational support is a waste of their life and future. Every person has to work and has the right to work. We must ensure that everybody is trained. During and after diagnosis, it is a central priority that this is followed up and not left for months before the next appointment.

I will speak particularly about women and girls. The committee found that the diagnosis rate for women and girls was 0.82%, less than half the rate for men and boys, which is 1.84%. Yet waiting list data showed a much more even split between males and females waiting for an assessment. This points to what many women and girls have described for years: being missed, misunderstood or recognised only after years of masking and distress. For girls in school, we know that this exacerbates mental health conditions, while students’ educational needs are not met—as I said earlier, leading to days out of school, truancy, and so on. This has a cascading effect of late diagnosis, poor mental health, difficulties accessing work and struggling with services that do not understand the varying presentations of autism. We met a witness who had been sent to a mental home because people did not understand that she was autistic. Thank goodness, she got through that, but it was awful to hear what had happened to her. I hope that the Government will ensure that the next strategy has a specific focus on autistic women and girls.

In 2024-25, one-third of all pupils with an education, health and care plan had autism recorded as their primary need. These children deserve ambition as well as better support so that they can continue in society.