Autism and ADHD Assessments

Alex Sobel Excerpts

Monday 6th February 2023 Westminster Hall

[Alex Sobel (Leeds North West) (Lab/Co-op)]

I will speak mainly about ADHD because we have limited time, but I want to put on the record that autism services need more resources, and autistic people deserve support and aftercare following diagnosis.

Currently, as we have heard, there is no NHS waiting time standard for ADHD assessment. It is not generally measured and reported, so we have to use anecdotal evidence. In Leeds the waiting time for the first appointment is a minimum of two years, although it is often much longer. Adult ADHD services are a postcode lottery. Some areas have no adult ADHD service at all, and many others have waits of five years-plus.

On top of long waiting times and limited support, people with ADHD are often stigmatised. I have heard people deny its existence, claiming that children with the condition are simply not disciplined properly, and that adults just need to grow up and take responsibility for their shortcomings. Others say, “Everybody has those symptoms.” Of course, anyone can struggle to concentrate or might sometimes act impulsively, but having numerous symptoms present from childhood that are so intense and frequent that they take over your life is a very different thing. Neuroimaging studies have shown that there are structural differences in ADHD brains. ADHD is real, and without treatment it can ruin lives. Why, then, are clinical staff not routinely trained in adult ADHD?

One person I know was told that their GP refused to refer them for an assessment because they had what they considered to be a “good job” and so could not possibly have ADHD. I am sure that the academics, authors and MPs I know with ADHD would disagree. I want to share something that a constituent told me:

“As a child I was always the class clown type, constantly in trouble. At 9 years old I was taken to the doctors, who essentially told my mum that ‘boys will be boys’. As the years passed, my life became progressively more unmanageable. I drank and took drugs to excess, was unable to manage my finances, and ruined many of my relationships and friendships. The cycle repeated endlessly, until one day a friend who taught at a college said she reminded me of a few of her students who had ADHD. I looked into it and realised I ticked so many boxes, so approached the NHS for a diagnosis, and was put on a lengthy waiting list—with no information about how long I would have to wait for my assessment.”

They went on:

“A few months later, I was handed a short prison sentence after a violent offence. After getting out a few months later, I tried once again to contact the NHS team, but to no avail. It didn’t take long for the drink, drugs and reckless spending to start again. I was also made homeless. Eventually, a support worker got me an appointment with the NHS ADHD team. I was told that I did have ADHD but that my life was too chaotic to start treatment. Shortly after, I ended up back in prison. After getting out I managed to find a flat, got a really good job, met my partner and my life was going well. But as anyone with ADHD will attest to, healthy routines are almost impossible to keep up without proper support, and it wasn’t long until old habits crept back in.”

[Sir Robert Buckland (South Swindon) (Con)]

I listened very carefully to that story. The hon. Gentleman’s mention of the criminal justice system allows me to intervene to say that there are grounds for hope, because 48 neurodiversity support managers have been appointed in our prison system, with more to come, to screen and identify people with neurodivergent conditions. Does he agree that that is a step forward that is long overdue?

[Alex Sobel]

Absolutely. In a BBC interview in 2019, I called for compulsory screening and diagnosis for everybody who received a custodial sentence. So many people in our criminal justice system have ADHD, and we would save far more money if we screened and gave people treatment, rather than making them go through the awfulness of that experience.

My constituent continued:

“I realised I needed help, and contacted the NHS ADHD team that gave me my original diagnosis. I was told that even with the diagnosis, it would be an 18-month-plus wait and I would have to start the process all over again. In the end, I went private, which is extremely expensive. I pay a monthly fee for the calls with my doctor, a fee for the prescription, and a fee for my medication. It comes in at around £500 a month, which I can only afford because my mum died last year and left me some money. It was a struggle finding what worked for me, but I’m now on a treatment plan, which has changed my life. I don’t drink anymore, my relationship with my partner has improved dramatically. I’m managing my finances better and my performance at work is a level I’ve never hit before. Life is just so much easier and happier now.”

For so many, their ADHD is not known to them. They are not aware that they have it, but it is sitting there undiagnosed. Someone may know something is different about them, but they do not know what it is. Some people cope, but others just do not. My constituent’s story shows the transformative power of an ADHD diagnosis and treatment. It shows how people are increasingly turning to the private sector for help. I have to say that that appears to suit the Government’s agenda—to encourage provision out of the NHS and into the private sector.

ADHD and autism services are in crisis. They need proper funding for training, screening, diagnosis and aftercare. I do not want to live in a country with a two-tier healthcare system, where those who can afford it get support and the rest are left to suffer. I hope the Government will heed the calls made today and act to fix their broken system.