Autism and ADHD Assessments

Siobhan Baillie Excerpts

Monday 6th February 2023 Westminster Hall

[Siobhan Baillie (Stroud) (Con)]

It is a pleasure to serve under your chairmanship, Ms Fovargue. I have had the good fortune of working with the ADHD Foundation, thanks to the work of my constituent, Jane Roberts, which culminated in my following quite closely some of the ins and outs, successes and not, of work on neurodiverse conditions. We had a beautiful display in Stroud to raise awareness, with a number of colourful umbrellas throughout the town. Many constituents asked, “What are these umbrellas?” and we were able to have conversations about what ADHD is and what needs to change to support people with the condition.

Day in, day out, I am battling for Stroud district parents of children with special educational needs. I am talking to the Government, local authorities, councillors, Ministers and health teams, but my efforts are nothing compared with those of the hundreds of Stroud families who are battling every single day to be heard. There are some really worrying decisions being made and situations for children, particularly those waiting for diagnosis or for an EHCP. One mum told me that her little lad with autism has an hour in a mainstream school, so by the time he has got his little coat off, he has to put it back on again and leave. We all know that a feature of autism is the need for stability and a steady day, which is absolutely not what this child gets.

Many parents are waiting for diagnosis for ADHD and autism. They are fighting to be listened to and to get a way forward. They are fighting to find the right person to talk to, or even to get a response in some cases. They are fighting for funding, they are fighting for dates, they are fighting to understand timelines and they are fighting against delays. All too often, they are being pushed into tribunals and getting into debt in the process, but they keep going because they are fighting for their children. Parents do not want their children to be labelled or medicalised, as is so often mentioned in response to these discussions; they want them to be understood, and they want to have the right support in place so that their children can thrive.

I am in my late 40s, so I went to school in the ’90s—Oasis, Blur, Kula Shaker and the Spice Girls. It is a long time ago now, and many of my peers are in all sorts of jobs. I have often wondered how many of us would have benefited from an early diagnosis of autism or ADHD when we were kids. Such conditions were not discussed when we were at school. It was not something that was raised or thought through. I am not surprised, therefore, that there has been a 400% increase in adults obtaining an ADHD diagnosis; it is because, unfortunately, this is quite new to many adults I talk to.

The parents and adults in Stroud who talked to me about these conditions said that there is nothing more discombobulating than constantly feeling that they are in the wrong job or career and do not understand why. They are never quite able to get the right help and are constantly changing things, such as diet and exercise; they will suddenly get medication, then come off it, but nothing helps. Again, adults who have had late diagnoses of autism and ADHD told me that they did not want to be medicalised or labelled; they wanted answers.

[Mark Eastwood]

My hon. Friend mentions the delays to adults getting a diagnosis in years gone by. Is it not the case that that is because there has until now been a misconception that ADHD is a sign of bad behaviour and not a medical condition?

[Siobhan Baillie]

My hon. Friend is completely right, and he spoke movingly about his own family’s experiences of these conditions. It is incumbent on all of us in this place to try to raise awareness of what these conditions are and how they affect people. Of course, with every individual being so wildly different, people will have different outcomes and different behaviours. We should not write anybody off or put them into one single bucket.

For the parents and adults I have spoken to, it is a complete relief when they finally receive a diagnosis and get to talk to somebody. One woman said to me, “Of course, when I looked up the condition, everything in my life made complete sense.” We should have got there earlier in her case.

When the Government look at this, I know that Ministers will carefully study the evidence, the data and the targets—the very smart people in the civil service will be doing the same—but the data is wanting, as we have heard from many hon. Members, and so much is hard to quantify. How many jobs and careers have been lost through the failure to diagnose autism and ADHD early? How many opportunities lost? How many people are on depression and anxiety medication, when clarity about their health through an early diagnosis could have helped them? How many people are secretly self-harming, and how many have taken their own lives?

That leads to my constituent, Jane, whose son, Ben, sadly took his life in 2020. I remember early conversations with Jane on Zoom during the pandemic, when we were on lockdown. I would have fallen apart; she obviously has had incredibly dark moments, but in response to Ben’s death she has dedicated her life to trying to raise awareness about ADHD. She has invested £30,000—probably even more now—to ensure that there is early diagnosis for other children, and she funded the Umbrella Project I mentioned in Stroud.

Another constituent, Zaphira Cormack, has written to me about this issue. She founded the ADHD Hub in Gloucestershire last year. Since lockdown, she has seen an influx of adults seeking diagnosis, and daily she receives calls from parents struggling with children who are self-harming or suicidal. There was no pathway for children and young people in Gloucestershire, although this has now been commissioned for Gloucestershire, so we are hoping to see change.

I will be interested to hear from my hon. Friend the Minister, who is a hugely compassionate and knowledgeable Minister, and a nurse by background. I want to hear her views in response to some of the questions asked by hon. Members. Many people talk to me about the lack of understanding and awareness at primary care level, as GPs are often the first port of call when people have concerns. Parents are concerned in particular about lack of training, so I would like to know whether this is a feature of the work of the Department and whether anything is being done about training in primary care. I would also like to know how the Department of Health and Social Care is working with the DFE and local government, because we know that waiting times and the daily experiences of parents often do not sit with her Department when it comes to education.

I am very interested in the pilots that my hon. Friend the Member for Newbury (Laura Farris) mentioned. We would very much like some pilots in Stroud, if there are any going. I would like a comparison study to be done: when there are swift and early diagnoses, how many children and adults are found not to have ADHD or autism, because they had early treatment? My biggest fear is that people are waiting so long that they are ending up in a very difficult place, and they may go without education in the meantime.

My approach to politics is quite simple. Once we strip away all the drama in this very beautiful building, with political parties shouting at each other, saying that the other side does not care or does not have the right ideas, at the very core of this job is spotting problems and solving them. When family after family are telling all of us, across the House, that, at a time when we want everyone to be more productive and active, GPs, the NHS, central Government and local government do not have quite the right policies to ensure that children and adults can thrive in this country, we absolutely have to act, and we have to get in earlier. I am really looking forward to hearing from the Minister today.